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Registro: 1
“When I Grow up I Would Like to Be …”: Factors Affecting Career
Choice of Community Disability Workers in Southern Africa. By:
Rule, Sarah; Kahonde, Callista; Lorenzo, Theresa. International
Journal of Disability, Development & Education. Sep2015, Vol. 62
Issue 5, p486-500. 15p. 1 Chart. Abstract: The effectiveness of
community based rehabilitation (CBR) programmes depends on the
calibre of staff recruited and employed. Therefore, this study aimed
to understand how the life experiences of community disability
workers (CDWs) in Malawi, Botswana and South Africa influenced
their choice of career. A life history approach was used to gather
data from 16 CDWs, involving two interviews of each participant.
Disability Studies postgraduate students conducted the interviews
and analysed the data with academic staff, using thematic content
analysis. It was found that lack of career guidance and information
about community disability work affected participants’ initial choice
of career. Some ended up in CBR because poor schooling
prevented them from choosing other careers. Personal experience
of disability and exposure to role models in rehabilitation motivated
the career choice of some. The authors make recommendations
including the selection of trainees with personal experience of
disability and CDWs mentoring potential recruits. [ABSTRACT
FROM AUTHOR] DOI: 10.1080/1034912X.2015.1035699. (AN:
109251370)
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Affecting Career Choice of Community Disability Workers in
Southern Africa.</A>
Base de datos: Psychology and Behavioral Sciences Collection

“When I Grow up I Would Like to Be …”: Factors Affecting Career Choice of Community
Disability Workers in Southern Africa.
The effectiveness of community based rehabilitation (CBR) programmes depends on the calibre of staff
recruited and employed. Therefore, this study aimed to understand how the life experiences of community
disability workers (CDWs) in Malawi, Botswana and South Africa influenced their choice of career. A life
history approach was used to gather data from 16 CDWs, involving two interviews of each participant.
Disability Studies postgraduate students conducted the interviews and analysed the data with academic
staff, using thematic content analysis. It was found that lack of career guidance and information about
community disability work affected participants' initial choice of career. Some ended up in CBR because
poor schooling prevented them from choosing other careers. Personal experience of disability and
exposure to role models in rehabilitation motivated the career choice of some. The authors make
recommendations including the selection of trainees with personal experience of disability and CDWs
mentoring potential recruits.

Keywords: career choice; community based rehabilitation; community disability workers; life history;
recruitment; selection of personnel; South Africa

Introduction
For many years community based rehabilitation (CBR) and other "rehabilitation in the community"
programmes (Velema, Finkenflügel, & Cornielje, [24]) have been implemented in developing countries,
including Southern African countries such as Botswana, Zimbabwe and South Africa (Finkenflügel, [ 6];
Nordholm & Lundgren-Lindquist, [13]; Rule, Lorenzo, & Wolmarans, [21]). These programmes have relied
on a variety of personnel to carry out activities such as providing medical rehabilitation and assistive
devices, assisting people with disabilities to access education and employment and involving people with
disabilities in advocacy activities (Finkenflügel, [ 6]; Nordholm & Lundgren-Lindquist, [13]; Rule et al., [21];
Velema et al., [24]).

Historically, those programmes that implemented CBR according to the World Health Organisation used
local supervisors who were members of the communities served, who in turn trained family members and
others to work with the person with a disability (Helander, Mendis, Nelson, & Goerdt, [ 8]). A number of
CBR programmes described in the literature have relied on the services of volunteers who may have other
occupations such as teachers, community development workers and farmers or they may be unemployed
housewives (Lysack & Krefting, [12]; O'Toole, [14]). However, more recently several levels of personnel
working in CBR and other community programmes for people with disabilities are described. For example,
in South Africa, some CBR programmes use mid-level workers while another provincial CBR programme
uses grassroots CBR field workers (Rule et al., [21]). Wirz ([27]) discusses the training of three levels of
personnel: grassroots CBR workers, mid-level rehabilitation workers, and professionals (who will usually
be some form of therapist). Although there is some literature about the training and roles of these
personnel (Cornielje & Ferrinho, [ 2]; Dunleavy, [ 4]; Wirz, [27]), very little information is available on the
personal characteristics of those who work with people with disabilities in the community and their reasons
for choosing to do this type of work.

A few authors have examined the motivations of people who volunteer in CBR, although no literature was
available on the motivations of CBR volunteers or employees in Africa. Pollard and Sakellariou ([18])
explored the involvement of occupational therapists in CBR through an international, questionnaire-based
survey conducted through the World Federation of Occupational Therapists. They indicated that the main
motivations that therapists expressed for volunteering in CBR programmes internationally were the
prospect of training in CBR, anticipation of a paid job later and wanting to help people with disabilities and
their communities. Similarly, for grassroots CBR cadres in Indonesia, helping others, improving the
community and personal development were motivations for volunteering (Lysack & Krefting, [12]). In
addition, the CBR cadres in Indonesia mentioned several other reasons for volunteering in such a
programme: having a disabled family member, prestige and standing in the community and social
opportunity. Several authors mention that provision of training is a factor in the retention of both volunteers
and paid staff who work in homes and the community with people with disabilities both in developed and in
developing countries (Finkenflügel, [ 6]; Jörgensen et al., [11]).

Although there is some information on the motivation of people who work as volunteers in CBR
programmes, little is known about those who make a career choice to take up paid employment working
with people with disabilities at community level. A wider review of literature on career choice and career
development found that most of the literature is related to young adults who come from the middle class
and live in Western contexts where there are good schooling, many opportunities for employment and an
individualistic approach to career choice (Bright, Pryor, Wilkenfeld, & Earl, [ 1]; Patton, Creed, & Watson,
[15]; Quimby & De Santis, [19]). Although the context of community disability workers (CDWs) in Africa is
quite different, there are several issues which are useful to consider and are outlined below.

Several authors (Stead, [22]; Stebleton, [23]; Vondracek & Reitzle, [25]) advocate the need for a
developmental-contextual perspective in relation to career choice and career development of Black South
African and African immigrant adolescents and young adults. This perspective considers the dynamic
interplay between individual development, family and contextual factors such as culture, economic climate,
socio-historical and political factors (Stead, [22]; Vondracek & Reitzle, [25]). Financial constraints during
studies as well as the threat of unemployment are two economic factors that appear to affect the career
choices of young South Africans of colour (Geldenhuys & de Lange, [ 7]; Stead, [22]). Another contextual
factor affecting young South Africans' career choices is the availability or lack of availability of career-
related information and career guidance at school (Geldenhuys & de Lange, [ 7]; Stead, [22]). Some
theorists posit that the concern with community rather than the individual is a particular cultural issue which
influences career choices of young adults and adolescents from the African continent (Stead, [22];
Stebleton, [23]). The authors were unable to find any literature on career choice in Malawi and Botswana.

In addition to the contextual factors noted above, researchers mention family as playing an important role
in career decision-making of adolescents and young adults from Africa (Geldenhuys & de Lange, [ 7];
Stead, [22]; Stebleton, [23]). Family members may influence career choice through being role models for
adolescents as they choose careers. Although the family may be a source of information on careers, they
may also put pressure on young people to make their choices according to economic values or social
status. Role models may also emerge more generally if young people have positive experiences of a
particular profession. Draper and Louw ([ 3]) found that positive interaction with and experiences of health
professionals motivated students in South Africa to choose a career in medicine. Thus, from the literature
on career choice it appears that there are numerous factors external to the individual that may influence
career decision-making in adolescents and young adults, although little is specific to careers in
rehabilitation. In addition, although some CDWs go into the career in their late 20s and 30s, the authors
were unable to find literature on career choices of older adults in Southern Africa.

The dissemination of Joint Position Paper on CBR (ILO, UNESCO, & WHO, [10]) and the launch of the
CBR Guidelines and matrix (World Health Organisation, [28]) promote the expansion of CBR, which
requires a workforce that needs to be trained. If CBR managers are to invest resources in the training of
personnel, they would benefit from knowing the characteristics of the type of people who have chosen to
enter and who have successfully remained in this career. This can guide appropriate selection of trainees,
thus reducing the likelihood of spending on those who drop out of CBR training or employment.

The current study investigated the life histories of 16 CDWs in Malawi, Botswana and South Africa. In this
article, the term "CDW" is used to refer to the people interviewed who work directly with people with
disabilities at community level and come from a variety of professions including occupational therapy (OT)
technicians, rehabilitation technicians, a social worker and family welfare educators. The work of the
CDWs includes home visits to people with disabilities and referral to services. The life history interviews
included a focus on the career choices of the CDWs and it is this aspect of the study which is reported on
in this article.

Methodology

Study Design
The study used a qualitative design. In-depth interviews were conducted following a topical life history
approach (Plummer, [16]). A topical life history does not in any way attempt to capture the complete life
experiences, emotions and thoughts of the person interviewed, but rather focuses on a particular topic or
issue as it occurs and influences the life of the participant. In the present study the information obtained in
the interviews focused on aspects of each participant's life that influenced their choice of career and their
work as CDWs.

Setting
The study was conducted in Botswana, Malawi and one province in South Africa. These settings were
chosen on the basis that the four students who collected data were working within the different settings
and hence they were familiar with the local systems and cultures.

Sampling
Non-probability purposive sampling was used in this study. The inclusion criteria targeted key informants
with at least five years' experience in paid employment as a CDW in rural areas, male and female
participants, different ages and both CDWs with disabilities and without disabilities. Plummer ([16])
describes this as intensity sampling, that is, selecting a key informant who can give good insight into a
particular area of interest. Due to the different systems in the three countries, the sampling targeted all
personnel who were working with people with disabilities in rural areas and who satisfied the inclusion
criteria.

Characteristics of Participants
Table 1 illustrates the characteristics of the 16 CDWs who participated in this study.

Table 1. Description of participants in the study.

Participant SexAgeLength of Job title Work Country Own Disability in family

pseudonym training experience in disability
years
Odirile F 54 6 months Family welfare 22 Botswana No Sister with temporary
educator disability after poisoning
incident; child with spinal
injury
Lily F 35 6 months Family welfare 10 Botswana No Nephew (not specified)
educator
Mothusi M 34 6 months Family welfare 11 Botswana No No
educator
Karabo F 54 6 months Family welfare 27 Botswana No Granddaughter (not
educator specified)
Masego F 46 4 years Rehabilitation 13 Botswana No Daughter blind, in
officer wheelchair, intellectually
disabled
Gil M 36 2 years Rehabilitation 12 Botswana No Father had stroke
technician
Participant SexAgeLength of Job title Work Country Own Disability in family
pseudonym training experience in disability
years
Kgomotso F 45 4 years Rehabilitation 17 Botswana No Child with convulsions for
officer first three years of life; blind
cousin (fully integrated)
Kefilwe F 31 3 years Social worker 7 Botswana Yes No
Jimu M 46 2 years Rehabilitation 17 Malawi Yes Cousin, intellectually
officer disabled, blind
Emak M 36 3 years Rehabilitation 10 Malawi No Father, psychiatric illness;
technician relative disabled by polio
Nick M 40 3 years Rehabilitation 17 Malawi No No
technician
Chisomo M 26 3 years Rehabilitation 5 Malawi No No
technician
Noname F 35 1 year Community 5 South Yes Brother, intellectually
development Africa disabled
worker
Jeffrey M 45 3 years OT technician 17 South No No
Africa
Londi F 43 3 years OT technician 20 South Yes, as a Brother (not specified, but
Africa child needs care as adult)
Mpho M 45 2 years OT technician 10 South No No
Africa
Research Team
The study was conducted by a team of eight researchers comprising academics and professionals from
different disciplines, namely: Disability Studies, Social Development, Linguistics and one non-
governmental organisation that trains CDWs. Four postgraduate students participated as research
assistants. They were responsible for recruiting participants in their respective countries as well as
conducting and transcribing interviews and participating in data analysis.

Data Collection
Data were collected from September 2011 to January 2012 by the four students, each of whom interviewed
four participants. The students were trained by an experienced researcher before they started the data
collection process. Each of them conducted the first interview and sent the transcription to the research
team for review and comments before they proceeded with the rest of the interviews.

The interviews were conducted in two parts as shown in Appendix 1. Each interview lasted about an hour
and they were conducted at places and times convenient to the participants. All the interviews were audio
recorded and transcribed verbatim by the students.

Data Analysis and Management

Thematic content analysis was used for data analysis. Data analysis followed Holloway and Freshwater's ([
9]) process of moving from one transcript to the next, checking the main features, confirming previous
accounts, identifying common elements and developing a collective story until some form of saturation is
reached.

Initially the team divided into groups and then pairs to independently analyse two transcripts. Once the
themes were identified and agreed upon, the remaining transcripts were analysed. No new themes arose
in later analyses, suggesting that data saturation had been attained. Two superordinate themes in the data
were identified with their constituent core themes. Dedoose, a software programme for qualitative data
analysis, was then used to recode the interview data as a means of checking the relationships among the
themes identified. The students checked with the participants if the final thematic framework was
consistent with information they had shared.

Ethical Considerations
The purpose of the study was explained to all participants and confidentiality was assured. Both verbal and
written informed consent was obtained from all the participants before the interviews started and each
participant was given a pseudonym. Permission to conduct the study was granted by the University of
Cape Town Human Research Ethics Committee and the relevant authorities in Malawi, Botswana and
South Africa.

Findings
Two superordinate themes were identified during the data analysis: contextual issues impinging on CDWs;
and personal characteristics, experiences and competencies. Four constituent themes in these
superordinate themes emerged from the data, which described the variety of factors influencing the
participants' career choices, namely: growing up, exposure to disability, limited career guidance and
personal characteristics.

Theme 1: Growing up

Childhood Experiences
There were many commonalities in the participants' experiences of growing up. The CDWs mostly had
rural backgrounds. They grew up in large extended families, in poor communities where they had a
communal way of life. These experiences of growing up in part contributed to the participants' limited
choice of career opportunities. However, these early experiences may also have contributed positively to
the participants choosing to work with people with disabilities. For example:

My grandmother ... taught us to look after each other ... [My brother] is disabled now and we take care of
him because we were taught to look after each other. (Londi, South Africa, 2012)

Schooling Experiences
The participants faced a number of difficulties at school. Among these were: financial constraints, poor
quality of education due to unqualified staff, bullying, poor performance and lack of support from adults:

I must admit I had a harsh school life because I wasn't an intelligent kid, honestly. Mmmm, so I suffered
throughout my school life really ... At that time we had very hostile teachers ... Primary was worse off
because we were taught by unqualified teachers who were just finishing like JC [junior certificate] ... even
in secondary we still had some unqualified teachers. (Kgomotso, Botswana, 2012)

Some of the communities where the CDWs grew up were not supportive of children going to school.
Instead they wanted the children to work on the farms or to do various menial jobs to raise money for their
families:

I was facing a lot of challenges. People would say that I was wasting my time going to school instead of
helping the parents going to the farm ... And even my age mates, they were busy doing piece work, going
to tobacco farms and when they came back with a lot of cash, their parents would ridicule me that I am
wasting my grandparents' money. (Emak, Malawi, 2011)

Although not explicitly stated in their responses, the participants' childhood and schooling experiences may
have contributed to their empathy for the people with disabilities they work with. It may also have given the
CDWs a better understanding of the cultural backgrounds and social status of the people they work with.
Theme 2: Exposure to disability

Experiences of Disability in Childhood

As they were growing up, the participants encountered people with disabilities within their own families and
in their communities:

The first incident, as far as I can remember, was during my early primary school years when I saw a
disabled boy playing football with both his legs and crutches at the same time ... Watching these disabled
children participating in different types of sporting activities, made me think of a way of assisting them, but
for sure, I did not know how. (Mothusi, Botswana, 2012)

Four participants themselves had a disability. For one participant, this personal experience of disability was
and continues to be a strong motivator for her choosing to become and continuing to work as a CDW:

I am sorry that I will relate everything with myself crawling, that when I see a CP [cerebral palsy] child and
see myself crawling, it really highly motivated me to do this thing of rehabilitation or this thing of OT. Inside
me I wanted to do OT after everything I saw, that is why it binds me to work and assist people with
disabilities. (Londi, South Africa, 2012)

Rehabilitation Professionals
In the same way that exposure to people with disabilities and personal experiences of disability attracted
some of the participants to work as CDWs, some were drawn by their exposure to rehabilitation
professionals. One came to know about physiotherapists when his father had a stroke and his family had
to take him for rehabilitation:

We used to go with him to the hospital and that's when I even heard of the word physiotherapy. I really
liked going into the department, I could see the physiotherapist, the equipment, all the goodies in the, you
know in the department ... , I started even asking questions; what is this? How do I go about it if I want to
train to be this? Because rehabilitation where I come from ... It's, it's relatively hidden. (Gil, Botswana,
2011)

Another one was exposed to community rehabilitation workers when they were doing awareness
campaigns through drama in the communities:

I saw a group of people, qualified community rehabilitation workers playing a drama about people with
disabilities. It was like awareness about disability. After finishing their drama I followed them and asked
how to become a community rehabilitation worker ... It is how I became a community rehabilitation worker.
(Jeffrey, South Africa, 2012)

Other Caring Professions

Smart uniforms and the caring approach of nurses attracted one participant to the nursing profession,
which she now sees as linked to disability work:

I had always wanted to become a nurse. I started cherishing this choice of career when my mother used to
take me to G District Hospital each time I fell ill. I loved the white uniforms nurses wear and their good-
natured manner when treating and helping patients ... The other reason is that the responsibilities of a
nurse and those of a disability worker are more or less related and both careers engage in community
development work. (Karabo, Botswana, 2012)

Clearly, the rehabilitation and nursing professionals mentioned above acted as positive role models for
those participants' later choice of career.
Theme 3: Limited career guidance and lack of knowledge of community disability work
This theme reveals that many of the participants lacked career guidance, which resulted in them having
limited career choices. They tended to opt for whatever career option came first. Community disability work
was a hidden career in the environments where the participants grew up in the sense that there are few
CDWs working in communities and it is not a conspicuous career as compared to other professions such
as teaching and nursing. Furthermore, it is not a career that many teachers and parents giving career
guidance would know about as it is also relatively low in status. Many of the participants did not choose
this profession as their first career choice but joined it by chance.

Minimal Career Guidance

The participants only knew about the professions that existed in their own communities. Their backgrounds
did not allow them exposure to different professions and did not motivate them to aspire to do anything
outside what they saw in the village, for example teaching or becoming a police officer.

One participant said she only went to school to learn to read and write, not thinking about career
development. When she was in standard seven she learnt about the work of health education assistants, a
career which she later aspired to join.

Another participant applied to study medical rehabilitation after seeing an advert in a newspaper without
any information of what the job was all about:

But in Malawi, we go to school without any guidance. After that, we just choose whatever way and we end
up what we are today ... I did not know that there is a profession in the medical rehabilitation until I finished
secondary school and I saw the advert for medical rehabilitation students and I applied. But even if I
applied I did not know what they meant, "medical rehabilitation". I was just doing that just to continue with
my studies. (Emak, Malawi, 2011)

I did not know what I really want to be after finishing school because we did not get guidance on different
careers. (Mpho, South Africa, 2012)

For one participant, job applications were just random and he took what came first. His country's political
situation deterred him from finishing his first course of choice and he ended up being a CDW:

So basically I applied for a few courses and then I was picked in my first interview at Malawi College of
Health Sciences ... I enrolled myself in a diploma course in Clinical Medicine. But because of some other
unforeseen circumstances ... involving my father and the political world ... so I left that ... That's when I
joined this organisation. (Emak, Malawi, 2011)

Limited Choices
Poor performance at school and therefore failing to qualify for enrolment in certain professions limited the
participants' choices. For example, one participant did not make the cut-off points to study her first choice,
which was journalism:

Because I had not done well with my Cambridge, I only qualified for certificate in social work. Yes. But I
wasn't doing it because I wanted to work with disabled people, I did it because I wanted to find something
that I thought I would feel comfortable with. (Kgomotso, Botswana, 2012)

Another participant said that he chose the job because he wanted a qualification with which he was
assured of getting employment:
I was so much attracted ... That you see it's a profession that there is no stiff competition. If you go to
school sometimes you would maybe be thirty, few in the class or you won't even have problem finding the
job. (Gil, Botswana, 2011)

Serendipity
For some, becoming a CDW happened through serendipity. One CDW was called to come and see
occupational therapists at work which reminded her of her own childhood disability and she felt moved to
join a rehabilitation profession:

One day I was home and I was called outside ... There was this lady ... She asked me to come to the
hospital to see what OTs [occupational therapists] are doing. When I go there ... I was so motivated when I
observed their work ... So when they talk about their work and I look [at] my past, crawling in the sun, I just
say ah this is the thing I was looking for. (Londi, South Africa, 2012)

For some, one job just led to another. A South African participant started working as a teacher and then as
a research assistant where he was exposed to occupational therapy. This started his interest in a career in
rehabilitation which he then followed, studying to be an occupational therapy technician.

Theme 4: Personal characteristics

Passion to Help People

The participants expressed their passion for helping and working with people, which contributed to them
becoming CDWs:

I am a person who didn't really like to see somebody suffering and I used to have passion from infancy for
people with disabilities and I used to wish you know there was something that I could do, maybe to help
them—even to correct the situation. (Masego, Botswana, 2011)

One expressed that his passion to work with people with disabilities was intensified by his interaction with
children with disabilities during his time at school:

I have always had some feelings about people with disabilities. I attribute these feelings as a result of my
association with disabled children and the relationship that I had with my albino friend during my early
primary school years at N. Working as a disability worker today, I cannot mince words to say that my
understanding of children with disabilities, and the close relationship that I had with some of them at N
primary school, inspired my career path. (Mothusi, Botswana, 2012)

Another participant said that she was looking for a career that suited her personality as a quiet and
reserved person. She was afraid of being troubled by students if she became a teacher as her parents
desired. Yet another CDW used her work experience to outline the personal attributes required in the job:

I was starting to enquire because I wanted to know what I wanted to be and then ... I wasn't a vocal person,
I didn't want to be troubled by students and that was the easiest thing that I could target also. (Kgomotso,
Botswana, 2012)

Discussion
The data from the limited number of participants in this study provide an insight into the life experiences
and sometimes serendipitous sequences of events that have resulted in CDWs entering their careers. A
number of valuable issues for CBR managers engaged in the selection and training of CBR personnel are
explored.
In this study, 10 of the 16 CDWs did not initially make a choice to work in the community with people with
disabilities although by the time they were interviewed they had all remained in this line of work for
between 5 and 27 years. Lack of career guidance and lack of knowledge of the opportunities for a career
in working with people with disabilities were two significant reasons that a number of the participants did
not make an initial conscious choice for a career in working with people with disabilities as young adults.
As mentioned, although no literature was found on career choice in Malawi and Botswana, Geldenhuys
and de Lange ([ 7]) found that a lack of guidance and information on careers is a factor that has affected
the range of career choices by young Black and coloured South Africans. This is in contrast to studies
conducted in more developed settings which assume that high school students and young adults have
access to information and guidance on career choices, although even here careers in disability may not be
perceived as high status (Patton et al., [15]; Quimby & De Santis, [19]).

As CBR is often implemented in resource-poor settings (Nordholm & Lundgren-Lindquist, [13]; O'Toole,
[14]; Rule et al., [21]), it is likely that there are few if any career guidance counsellors in these situations
and there may be little information on employment possibilities in CBR. However, perhaps the experiences
of two of the South African participants in the study indicate an alternative to formal career guidance and
printed or web-based career information. These participants described how a disability awareness-raising
event linked to a recruitment campaign was effective in making them aware of a career in CBR. The
awareness-raising event involved visits of people with disabilities and trainers using drama as they visited
local villages.

In spite of the lack of information and career guidance, both personal experience of disability and positive
experiences and interactions with people in medical and rehabilitation professions did contribute to a
number of participants having a sense of direction for their future careers. The positive impact of role
models and mentors has been noted in a number of studies on career choice and decision-making (Bright
et al., [ 1]; Draper & Louw, [ 3]; Quimby & De Santis, [19]). Quimby and De Santis propose that increasing
students' exposure to role models through mentoring programmes and activities such as job-shadowing
may assist career decision-making.

Recent international documents on CBR (ILO et al., [10]; World Health Organisation, [28]) endorse the role
of people with disabilities and their family members in providing services within a CBR programme. Werner
([26]) specifically promotes the positive impact of employing people with disabilities to provide assistance
and services to others, noting the benefits of having people with disabilities as role models. In this study
four CDWs had experienced disability themselves and another seven had a family member with a
disability. Some of these participants noted that these personal experiences were a motivating factor both
in choosing to be and in remaining as a CDW. Such personal experiences will give the CDW insight into
and understanding of the lives of their clients as well as empathy, which is not easy to develop through
training alone. This is crucial in a field where the attitudes of service providers can be a barrier to people
with disabilities (Rule & Modipa, [20]).

Although it is ideal to have a set of personal characteristics that guide selection of CBR personnel to be
trained, it may also be important to allow for other modes of entry into CBR training. Several authors
(Bright et al., [ 1]; Plunkett, [17]) describe young people perceiving accidental, unplanned or unintentional
events as influencing their career choices and development. It appears that such serendipitous events,
particularly having contact with CDWs, also influenced the participants in this study. The authors suggest
that rather than relying on chance encounters, CDWs should proactively raise awareness of the nature of
their work in communities. This would expose more people to a career in community disability work, thus
enabling those interested to make an informed decision about this career.
Most of the participants in this study grew up in rural areas which were poorly resourced and not greatly
supportive of education. This may have contributed to some of them getting poor marks and therefore
creating a limitation to the careers which they could choose. On the other hand, the participants' rural
backgrounds may have partly contributed to them continuing to work as CDWs in a rural area. In Nigeria,
Ebuehi and Campbell ([ 5]) found that health workers who originated from rural areas were more likely to
work in rural areas than their urban counterparts. Similar findings were reported in Malawi among medical
students whereby those from rural areas and small towns were more likely to work in these areas than
those from urban areas (Yeganeh-Arani, Chandratilake, & Muula, [29]). This can be another factor worth
considering in recruitment of CDWs.

Limitations of the Study

Using a life history approach to the methodology, this study necessarily had a small number of participants.
Although the range of job titles and related duties of the participants bring a richness to the data, this
together with the sample size are limitations of the study in that comparison of the results across the three
Southern African countries is not completely possible. Thus, in this article a composite picture of a small
group of CDWs in Southern Africa is provided rather than a comparison between the three countries. The
use of students who were novice researchers may have limited the quality and amount of data from the life
history interviews.

Conclusion and Recommendations

In this study of the factors affecting the career choice of CDWs it became clear that this work, whether in
the guise of occupational therapy technician, rehabilitation officer or rehabilitation technician, is often a
"hidden profession" to young adults in mainly rural areas of Malawi, Botswana and South Africa. The
implication of this is that most of the CDWs ended up in this career without an initial informed and
conscious decision to do so. Although some of the factors affecting the CDWs' entry to the profession
seem arbitrary and serendipitous, there are other factors, such as personal experience of disability, a
passion for helping people and exposure to role models, that could have an influence on the recruitment
strategies of CBR programmes.

It is suggested that CBR programmes encourage their existing personnel to play a positive role as mentors
and role models for young people with disabilities and community members who may be attracted to a
career in working with people with disabilities. Another strategy which may be beneficial is to use
communication and information-sharing methods such as drama that are appropriate to the target group
and their frequent rural location, in any recruitment drive for CDWs. CBR programmes should also be
interacting with schools, particularly in rural areas to promote community disability work as a viable career
option. Perhaps most importantly, selection of CDWs can focus on those with personal experiences of
disability and those who have a particular passion for helping others.

This study only examined the motivations and reasons for career choice in CDWs who have remained in
the profession for a period of not less than five years. In future, a study of those CDWs who have not
continued with this line of work would enhance the knowledge of managers of CBR programmes and it
could guide their recruitment and selection processes.

As CBR develops, it will also be important to research career development opportunities in community
disability work, looking at prospects for advancement and promotion and whether this affects career choice
and retention of personnel.

Acknowledgements
The authors would like to thank the Programme for the Enhancement of Research Capacity at the
Research Office, University of Cape Town, for funding this study. The authors are grateful for the input and
discussions from colleagues Prof Roy McConkey, Dr Margie Booyens, Dr Ermien van Pletzen and Ms
Dorothy Chinguo. The input of the post-graduate students, Sylvester Butao, Bryson Kabaso, Zelda Mubi
and Khadija Mashuke, is gratefully acknowledged as is the willingness of the community disability workers
to be interviewed. Thanks are also extended to Mrs Maria Zuurmond and Mr Joerg Weber for providing
guidance for the writing of this article.

Disclosure statement
The authors had no financial or other conflicts of interest.

Appendix 1

Interview 1

• 1. Please tell me about your early childhood and the family you grew up in.

• 2. Please describe the area and community you grew up in.

• 3. Please describe your mother for me.

• 4. Please tell me about your father.

• 5. Please tell me about your brothers and sisters.

• 6. Please tell me about your experiences at school.

• 7. Please tell me about the first time you became aware of disability/disabled people.

• Probe: What impact has that event had on your life?

• 8. Please can you describe a specific event that you can remember from childhood or teenage years
that was particularly important with regard to your later choice of career.

• Probe: What impact has that event had on your life?

• 9. Please can you tell me a specific event from your adult years that is important to you concerning
being a [CDW/whatever terminology is used in that country].

• Probe: What impact has that event had on your life?

Interview 2

• 10. Can you tell me about a low point in your life in relation to disability or working in the community?

• Probe: What impact has that event had on your life?

• 11. Can you tell me about a high point in your life related to disability or working in the community?

• Probe: What impact has that event had on your life?

• 12. Please tell me about a turning point in your life.

• Probe: What impact has that event had on your life?

• 13. What do you think has been the biggest challenge that you have had to deal with concerning
working on disability issues in the community?

• 14. Which person or organisation has had the biggest impact on your understanding of disability and
development?

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~~~~~~~~
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A qualitative exploration of a family self-help mental health program
in El SalvadorNickels, Samuel V.; Flamenco Arvaiza, Nelson A.;
Rojas Valle, Myrna S.. INTERNATIONAL JOURNAL OF MENTAL
HEALTH SYSTEMS; APR 1 2016; 10 (AN 000373195400001)
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Registro: 3
A rehabilitation model as key to comprehensive care in the era of
HIV as a chronic disease in South Africa. By: Chetty, Verusia;
Hanass-Hancock, Jill. AIDS Care. Mar2016 Supplement, Vol. 28,
p132-139. 8p. Abstract: In the era of widespread access to
antiretroviral therapy, people living with HIV survive; however, this
comes with new experiences of comorbidities and HIV-related
disability posing new challenges to rehabilitation professionals and
an already fragile health system in Southern Africa. Public health
approaches to HIV need to include not only prevention, treatment
and support but also rehabilitation. While some well-resourced
countries have developed rehabilitation approaches for HIV,
resource-poor settings of Southern Africa lack a model of care that
includes rehabilitation approaches providing accessible and
comprehensive care for people living with HIV. In this study, a
 learning in action approach was used to conceptualize a
comprehensive model of care that addresses HIV-related disability
and a feasible rehabilitation framework for resource-poor settings.
The study used qualitative methods in the form of a focus group
discussion with thirty participants including people living with HIV,
the multidisciplinary healthcare team and community outreach
partners at a semi-rural health facility in South Africa. The
discussion focused on barriers and enablers of access to
rehabilitation. Participants identified barriers at various levels,
including transport, physical access, financial constraints and poor
multi-stakeholder team interaction. The results of the group
discussions informed the design of an inclusive model of HIV care.
This model was further informed by established integrated
rehabilitation models. Participants emphasized that objectives need
to respond to policy, improve access to patient-centered care and
maintain a multidisciplinary team approach. They proposed that
guiding principles should include efficient communication,
collaboration of all stakeholders and leadership in teams to enable
staff to implement the model. Training of professional staff and lay
personnel within task-shifting approaches was seen as an essential
enabler to implementation. The health facility as well as outreach
services such as intermediate clinics, home-based care, outreach
and community-based rehabilitation was identified as important
structures for potential rehabilitation interventions. [ABSTRACT
FROM AUTHOR] DOI: 10.1080/09540121.2016.1146204. (AN:
114015270)
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Base de datos: Psychology and Behavioral Sciences Collection

A rehabilitation model as key to comprehensive care in the era of HIV as a chronic

disease in South Africa.

In the era of widespread access to antiretroviral therapy, people living with HIV survive; however, this
comes with new experiences of comorbidities and HIV-related disability posing new challenges to
rehabilitation professionals and an already fragile health system in Southern Africa. Public health
approaches to HIV need to include not only prevention, treatment and support but also rehabilitation. While
some well-resourced countries have developed rehabilitation approaches for HIV, resource-poor settings of
Southern Africa lack a model of care that includes rehabilitation approaches providing accessible and
comprehensive care for people living with HIV. In this study, a learning in action approach was used to
conceptualize a comprehensive model of care that addresses HIV-related disability and a feasible
rehabilitation framework for resource-poor settings. The study used qualitative methods in the form of a
focus group discussion with thirty participants including people living with HIV, the multidisciplinary
healthcare team and community outreach partners at a semi-rural health facility in South Africa. The
discussion focused on barriers and enablers of access to rehabilitation. Participants identified barriers at
various levels, including transport, physical access, financial constraints and poor multi-stakeholder team
interaction. The results of the group discussions informed the design of an inclusive model of HIV care.
This model was further informed by established integrated rehabilitation models. Participants emphasized
that objectives need to respond to policy, improve access to patient-centered care and maintain a
multidisciplinary team approach. They proposed that guiding principles should include efficient
communication, collaboration of all stakeholders and leadership in teams to enable staff to implement the
model. Training of professional staff and lay personnel within task-shifting approaches was seen as an
essential enabler to implementation. The health facility as well as outreach services such as intermediate
clinics, home-based care, outreach and community-based rehabilitation was identified as important
structures for potential rehabilitation interventions.

Keywords: HIV; rehabilitation; model of care; disability; South Africa

Introduction
Rehabilitation professionals in South Africa have seen the effect of people with HIV living longer but facing
disabling effects of the virus, other comorbidities and associated side effects of antiretroviral therapy
(Nixon et al., [17]). Disability is progressively being viewed by the rehabilitation team through the lens of
the World Health Organization's International Classification of Function, Disability and Health (ICF), which
is concerned with the participation of an individual factoring in the environment and the psychosocial
backdrop framing one's everyday life (Hanass-Hancock, Myezwa, Nixon, & Gibbs, [14]; Myezwa, Stewart,
Musenge, & Nesara, [16]). Furthermore, disability may be permanent, temporary or even episodic in an
individual living with HIV (Banks, Zuurmond, Ferrand, & Kuper, [ 1]). Rehabilitation professionals need to
approach HIV-related disability within this evolving context to address the dynamic needs of people living
with HIV in South Africa.

The rehabilitation framework governing healthcare practice in public South African sectors is under scrutiny
as researchers in the field of HIV and disability aim to identify and address the gaps embedded in these
systems (Cobbing et al., [ 7]). South Africa's current National Strategic Plan (NSP) for sexually transmitted
infections (STIs) HIV and TB for 2012–2016 incorporate disability. This NSP recognizes people with
disabilities as a key population and lists a number of services in relation to access, prevention, treatment,
care and support. Although initial efforts are underway to integrate issues related to disability and HIV,
more needs to be done to concretely integrate a rehabilitation model to guide delivery of care. Although the
plan mentions the prevention of disability in objective three, it does not include any rehabilitation strategies
such as physical, vocational and mental health interventions. In order to achieve comprehensive care and
a long and healthy life for all South Africans living with the disease, rehabilitation has to be realized as a
crucial component of HIV management in reducing disability (Chetty & Hanass-Hancock, [ 5]; South
African National AIDS Council [SANAC], [22]).

Physical and financial accessibility of rehabilitation and sustainability of care influence health outcomes. A
recent study in a semi-rural setting in South Africa explored the patients' perspectives on physiotherapy
and revealed barriers to accessing hospital-based services. Patients valued the rehabilitation received but
many were not able to maintain treatment. Barriers included financial constraints and physical access of
services including transport (Cobbing, Hanass-Hancock, & Deane, [ 8]). Home-based care has been
discussed (Chetty & Hanass-Hancock, [ 5]; Cobbing et al., [ 8]; Roos, Myezwa, & van Aswegen, [20]) as a
solution to improve accessibility of rehabilitation interventions. Scholars (Chappell & Johannsmeier, [ 3];
Rule, Lorenzo, & Wolmarans, [21]) argue that community healthcare workers can be skilled to perform
certain rehabilitation interventions with patients in their homes. It is thought that such an approach could be
informed by decades of experiences with community-based rehabilitation (CBR) as well as experiences
within the current task-shifting approach in public health. CBR is an alternative to the traditional central
institution-based rehabilitation approach. It includes areas of health, education, livelihood, social
participation and empowerment and is delivered through community care workers. Hence, it holds potential
to deliver some degree of access to rehabilitation for people living with HIV in resource-poor settings
(Finkenflügel, Wolffers, & Huijsman, [12]; Rule et al., [21]). The implementation of the CBR framework can
be executed by rehabilitation professionals or trained community rehabilitation facilitators who have been
trained to provide care and often also advocate for equality for people with disabilities in general (Chappell
& Johannsmeier, [ 3]). Although these approaches exist and could work in resource-poor settings, there is
a lack of integrating these approaches into the response to priority programs such as HIV and AIDS or TB
programs. Although research identifies gaps in the current rehabilitation frameworks (Chetty & Hanass-
Hancock, [ 5]; Cobbing et al., [ 8]), more needs to be done to explore both barriers and facilitators of
rehabilitation frameworks in South African settings as well as feasible approaches to offer comprehensive
care to address the disabilities related to HIV and its comorbidities.

This study aimed to explore the current rehabilitation service as experienced by people living with HIV and
the multidisciplinary healthcare team within a semi-rural setting in South Africa. It forms the first step of an
action research study using a learning in action approach which aims to identify the shortfalls of the current
model in order to conceptualize a potential model of care in the same community. These preliminary
findings will lend itself to the rigorous review of experts in the field of HIV and rehabilitation in the current
context in order to achieve a comprehensive model of care.

Methods

Research design
An interpretive qualitative design using Van Manen's pedagogy to obtain depth and insight into the
experience of participants accessing the existing framework of rehabilitation of people living with HIV was
chosen. This technique provided the researchers with the tools to address the complexity of health
services using a participatory approach by means of in-depth discussions with both the researchers and
informants participating fully. It allowed researchers to go beyond the data to draw out explanations in
phenomena and delve into hidden meaning embedded in words of the research participants (Van Manen,
[23]).

Study setting
The study setting as defined in the introduction is semi-rural, meaning that it is away from the city center
with limited infrastructure. The area has access to a 200-bed hospital and radial clinics. The hospital
provides a service for 750,000 people. It is estimated that more than 250,000 of people living in the
catchment area are HIV positive. Due to the dramatic increase in the number of patients suffering from
AIDS-related illnesses, the hospital in the area has focused its attention on improving and increasing its
capacity to render holistic health care to people living with HIV and their families through various projects.
This study is part of such a project and is holistically aimed at developing a model of care to integrate
disability and rehabilitation into HIV care at the study setting (Chetty & Hanass-Hancock, [ 4]; Cobbing et
al., [ 8]).

Participant recruitment and sampling

Thirty participants were purposely recruited using maximum variation to explore various views of
stakeholders from a semi-rural healthcare setting in KwaZulu-Natal, South (Patton, [18]). They included the
multidisciplinary healthcare team (doctors, physiotherapists, physiotherapy students who rotated through
the site for clinical practice, dieticians, social workers, mid-level workers and community healthcare
workers); site-affiliated non-governmental organization representative(s) and service users at the study
setting. Twenty-one women and nine men participated in the discussion group. Once ethical clearance was
obtained from the University of KwaZulu-Natal, South Africa, informed consent was obtained from the
participants and relevant authorities. Participation in the focus group was voluntary and no incentives were
offered. The biographical data and characteristics of participants are depicted in Table 1.

Table 1. Biographical data and characteristics of participants (n = 30).

Characteristic variable number of respondents

Persons living with HIV 2
Caregivers 2
Community healthcare workers 7
Dietician 1
Doctor 1
Nurses 7
Physiotherapists 3
Physiotherapy students 4
Physiotherapy assistants 2
Social worker 1
Gender
Male Female
9 21
Age of respondents (Years)
20–29 11
30–39 10
40–49 5
50–59 3
Over 60 1
Data collection
The researchers conducted a focus group discussion adding a participatory paradigm with a guide
exploring views of participants on the existing rehabilitation framework (Finch & Lewis, [11]). The
researchers developed a focus group guide following the review of relevant literature (Barbour, [ 2]). The
guide prompted views on the existing rehabilitation framework such as barriers to care, stakeholder
responsibilities and recommendations on improving service delivery. However, it allowed for flexibility and
interaction between researchers and participants on relevant views regarding HIV, disability and
rehabilitative care. The discussions were conducted in English, with translations into isiZulu where
necessary. Discussions were tape recorded and entered into NVIVO version 9. The researcher also noted
nonverbal nuances. The raw data were transcribed verbatim by a research assistant immediately after
discussions and disseminated among the key participants for verification. The participants were coded to
ensure anonymity.

Data analysis
The researcher has adopted the methodological approach of Van Manen ([23]) by turning to the "nature of
the lived experience, existential investigation, phenomenological reflection and concluded by
phenomenological writing" in analyzing the data. Two researchers coded the narratives after extensive
review and debriefing. Data were read, re-read and themes were identified as emerging from the data (Van
Manen, [23]). Rigor was achieved by using thick descriptions detailing accounts and settings as described
by participants. Furthermore, peer debriefing by an expert in qualitative research served as a platform to
discuss emergent themes. Finally, member checking which involved verification of findings by participants
was also deemed critical to maintain rigor in this study (Creswell & Miller, [ 9]).
Results
The study participants described the current rehabilitation pathway as in Figure 1 as being centrally
situated at the hospital. Patients who needed to access rehabilitation services to address bodily
impairments or activity limitations had to visit the hospital or be referred to the hospital from the local
clinics. The hospital offered limited services such as physiotherapy and dietetics and lacked major
therapeutic disciplines such as occupational therapy and speech therapy.

Graph: Figure 1. Current rehabilitation pathway at study setting.

The analysis of the data revealed several themes with regard to barriers and enablers. Participants
identified barriers to rehabilitation such as environmental constrains, fiscal challenges and institutional
limitations. Table 2 provides an overview of categories and themes. The results also revealed iterated
themes from narratives which were integrated into established existing frameworks of rehabilitation models
that use four main categories: objectives, principles, enablers and settings as their foundation (Chetty &
Hanass-Hancock, [ 5]).

Table 2. Summary of categories and themes.

Categories Themes
Environmental constraints Centralization of services
Commute obstruct
Fiscal challenges Funding feud
Institutional limitations Staffing vs. workload dilemma
Poor collaboration of multidisciplinary team
Participants' recommendationsEducation
Proposed model of care
Environmental constraints
The discussions among participants revealed that in their experience, centralization of services challenges
patients' accessibility to integral care. Commute obstruct posed a further strain on patients, as they
experience diverse challenges with regard to transportation to centralized services within hospital settings.
Participants explained that patients experienced challenges in regard to time, distance and financial
issues. For instance, patients had to travel several times to the clinic and hospitals for rehabilitation or
medical care. In addition, some of them experienced difficulty walking longer distances to the clinics or
were in need of transportation with a private car which they did not possess

Our patients don't have transport, it is a long hilly walk to the hospital and they are weak. (Community Care
worker 5)

Participants felt that rehabilitation should be offered at the local clinics and as home-based care by trained
care workers. Participants identified community care workers as more accessible to frail patients and to
patients who were unable to access central services. There was vast agreement that the rehabilitation
offered at the central hospital was beneficial, but participants believed that community care workers could
receive adequate skills training to offer services to patients at nearby clinics and in the form of domiciliary
care. The health science students from a local tertiary institution who are placed at the study setting for a
clinical practice rotation were also seen as an asset as stakeholders believed that they could be sourced
into the community clinics and offer home-based care if needed

If the rehabilitation team can't reach patients then community care workers should be trained properly to do
rehab at patients home and at clinics. (Student physiotherapist 3)

Fiscal challenges
It was echoed in the discussions that the financial challenges constraining households in the study setting
was a barrier to accessing central services. Participants felt that patients were facing disabling effects of
HIV limiting their optimal function and they were unable to resume or obtain employment. They explained
further that patients were challenged by being unable to receive therapy to improve function and return to
work due to scarcity of money to access these services

Patients are referred from clinic to the hospital for rehabilitation but they have no money to go the hospital,
and there is no therapist at the clinic. (Nurse 3)

Participants also explained that in their community, parents of children living with HIV who develop
disabilities become caregivers and are unable to work and are faced with the burden of being unable to
access health care due to financial constraints. Participants felt that the fiscal challenges facing their
community form part of a vicious life cycle

Children with HIV and cerebral palsy need care, vaccines, rehabilitation but can't get to hospital because
there is no money. (Physiotherapist 2)

Institutional limitations
A senior staff member at the hospital who participated in the study felt that the lack of staff to offer
comprehensive health care affected the rehabilitation of people living with HIV. The rehabilitation team
explained that the workload demand was extensive and the high number of patients made it difficult for the
limited healthcare staff to offer adequate rehabilitative care. Furthermore, poor collaboration of the
multidisciplinary team was a major concern among participants. A physiotherapy assistant verbalized her
dissatisfaction of patients being discharged without consultation with the rehabilitation team or follow-up
appointments being made. A community care worker felt that when patients were discharged from hospital,
they were not reintegrated back into the community and rehabilitation ceased

Staffing-patient ratio is a problem. Large volume of patients and few staff creates a problem for
rehabilitation. (Doctor)

Patients are discharged without any discussion with rehabilitation team; there is no follow up at all.
(Physiotherapy assistant 1)

Participant's recommendations
The lack of knowledge of caregivers and patients was seen as a hindrance to rehabilitation, as patients
were not aware or made aware of the significance of the service. The healthcare team also felt that the
ongoing education of all rehabilitation staff was essential to offer optimum care to people living with HIV in
their community

Lack of knowledge of patients and caregivers is a big problem. (Nurse 1)

Clinics should have pamphlets for rehabilitation and the physio can come once a month to promote
rehabilitation. (Community care worker 2)

The results of the group discussions were used to inform the design of an inclusive framework for a model
of HIV rehabilitative care. The framework was informed by established integrated rehabilitation models
(Chetty & Hanass-Hancock, [ 5]). These models focused on four main categories: objectives, principles,
enablers and settings. Stakeholders in this study proposed context-specific iterated themes to reflect in
these categories as depicted in Figure 2. They emphasized that objectives need to be derived from
existing policies, and focus on improved access to patient-centered care using a multidisciplinary team
approach. They supposed that efficient communication, collaboration of all stakeholders and leadership in
teams need to be the principles on which to build a comprehensive model of care. Education and training
for professional healthcare staff and lay personnel within task-shifting approaches were seen as essential
enablers. Participants identified the health facility as well as outreach services such as hospital,
intermediate clinic, home-based care, outreach and CBR as important settings and structures for timeous
intervention.

Graph: Figure 2. Recommended framework informing model of care for rehabilitation.

Discussion
The study explores the existing rehabilitation framework at a semi-rural public healthcare setting in South
Africa by engaging in discussions with the multidisciplinary healthcare team; site-affiliated non-
governmental organization representative(s) and service users. The experiences of the participants
highlighted barriers to rehabilitation and elements of a framework to guide the development of a context-
specific model of care for the rehabilitation of people living with HIV.

In a first step, we identified the gaps in the current rehabilitation model at the study setting. Similar to
previous work in this setting (Cobbing et al., [ 8]; Hanass-Hancock & Alli, [13]; van Egeraat, Hanass-
Hancock, & Myezwa, [10]), this study identified a lack of accessibility to centrally situated services was a
major contributor to barriers of rehabilitation. van Egeraat et al. ([10]), in exploring healthcare workers
experience of HIV-related disability in the study context, found that healthcare workers felt challenged with
the double burden of HIV and disability and often believed that it was beyond their scope to offer
rehabilitation. They referred patients to the central hospital, but often did not receive feedback regarding
the management. Authors suggested that community healthcare workers needed training and support to
deal with the increased incidence of disability related to HIV.

In a subsequent study, Hanass-Hancock and Alli ([13]) offered many of the local healthcare workers with
training on the intersection of disability and HIV. On evaluating the impact of this training, they found that
healthcare workers did make considerable improvement with attitudinal barriers and access to general
health care, but they were less successful to change rehabilitation practice (Hanass-Hancock & Alli, [13]).

Further evidence from the current study indicated fiscal challenges on both the service delivery side and
the affordability of services. On the one hand, the funding feud delves into the vicious cycle between
poverty, disability and rehabilitation. People living with HIV experiencing disabilities in this study were faced
with financial constraints limiting them from attending the hospital-based rehabilitation sessions.
Furthermore, they report being unable to return to work to obtain an income to supplement the cost of
these visits. The cycle of not achieving optimal function through rehabilitation to return to work as a result
of not having the financial means to access hospital-based rehabilitation sessions has been echoed by
Cobbing et al. ([ 8]) where patients benefited from the rehabilitation they received, but barriers such as lack
of transport to get to their nearest hospital and lack of money to pay for transport prevented continuity of
care. On the other hand, the lack of rehabilitation staff and allocation of resources to the rehabilitation
system provided barriers to counteract this viscous cycle.

Participants in this study also identified structural challenges limiting rehabilitation such as poor
multidisciplinary collaboration and lack of identification and referral as a barrier to rehabilitation. Similar
observations were made by Chetty and Maharaj ([ 6]) investigating the collaboration of healthcare workers
concurred, indicting a lack of staff and collaboration as challenges to rehabilitation of people living with
HIV. The lack of professional healthcare staff within the public healthcare domain has been of great
concern in South African healthcare contexts (Cobbing et al., [ 7]; Mayosi & Benatar, [15]). Mayosi and
Benatar ([15]) report the migration of healthcare professionals to well-resourced countries such as
Australia, Canada and the UK leaving South Africa under greater financial and workforce strain. The
shortage of rehabilitation staff in the region is even more daunting, especially in resource-poor settings
despite the large population of people in need of the service (Cobbing et al., [ 7]). CBR offers one avenue
to compensate for staff shortages in resource-poor settings. Community members, family of people living
with HIV and people living with HIV themselves can be capacitated through task shifting and training to
provide some form of rehabilitation within communities and homes (Chappell & Johannsmeier, [ 3]). The
empowering and skill development of community care workers and caregivers could be harnessed to
address issues of accessibility. In the current study setting, people living with HIV needing rehabilitation
have to access services at the centrally situated hospital. There are no rehabilitation services provided at
the radial clinics. However, the community outreach center, which is a site-affiliated non-governmental
organization, sends community healthcare workers into the community and into patient's homes to offer
psychosocial support. Participants felt that the current model could be utilized through enabling these
outreach services to provide CBR and home-based care approaches.

CBR has, however, not been sufficiently assessed with regard to its effectiveness within a South African
rehabilitation healthcare setting. A study by Chappell and Johannsmeier ([ 3]) on the impact of CBR
implemented by community rehabilitation facilitators explored the broadened scope of the role of a mid-
level worker in providing more than individual medical rehabilitation but also encompassed the advocacy
for equalization of opportunities and community development. Potterton, Stewart, Cooper, and Becker
([19]) have documented how caregivers can be enabled to perform home stimulation programs initiating
significant improvement in the cognitive and motor development of children infected with HIV (Potterton et
al., [19]). Some studies report on health workers being able to overcome structural challenges. For
instance, Rule et al. ([21]) highlight how a community rehabilitation facilitator overcame the challenge of
transport constraints in the public sector by advocating that taxi owners and drivers should create
opportunity for people with disabilities to access their vehicles reporting improvement in accessing health
services at the end of the case.

In a second step, we used the information of the participants to inform a framework that supports the
development of an appropriate model of care. For this purpose, an integrated framework using a synthesis
of Australian rehabilitation models was used as the lens to interpret participants' recommendations for the
framework of care (Chetty & Hanass-Hancock, [ 5]).

The four main categories, that is, objectives, principles, enablers and settings, are discussed congruently.
Similar to this study, the synthesized framework depicted the improvement of access to care, reducing
inequality in health status, providing safe, high-quality health care, promoting a patient-centered continuum
of care and optimizing health services as being part of the objectives. Leadership and a multidisciplinary
team approach were common principles in the frameworks; however, evidence-based practice as a guiding
principle lacked attention by participants in this study. Education and training for rehabilitation service
providers at all points of care were a common enabler in both frameworks, but task shifting to empower lay
personnel such as community healthcare workers was seen as a key imperative in this study. Stakeholders
involved in this study did not highlight the need for data management systems to manage patient
information, which was a dominant necessity in the summary of the rehabilitation models used as the
framework for the discussions. The specific setting, however, was commonly viewed as essential in
providing appropriate timeous intervention within the delivery care system (Chetty & Hanass-Hancock, [
5]).

Conclusion
South Africa's NSP for STIs HIV and TB for 2012–2016 including disability in its design is a positive
paradigm shift in health care for the country (SANAC, [22]). Although rehabilitation is an identifiable
missing component, South Africa is currently reviewing its rehabilitation frameworks. Although the study is
limited to a single semi-rural healthcare setting, it offers pertinent evidence of gaps in the current
rehabilitation framework and identifies key recommendations to facilitate the development of a
comprehensive model of care for people living with HIV. However, further investigation is needed in
collaboration with a wider audience such as experts within the field of HIV and rehabilitation within the
South African context to adapt and validate the model prior to the piloting phase within the study setting.

Disclosure statement
No potential conflict of interest was reported by the authors.

ORCID
Verusia Chettyhttp://orcid.org/0000-0003-2934-8687

Jill Hanass-Hancockhttp://orcid.org/0000-0003-3662-8548

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~~~~~~~~
By Verusia Chetty and Jill Hanass-Hancock

Reported by Author; Author

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Registro: 4
A scoping review of 10 years of published literature on community-
based rehabilitation. By: Cleaver, Shaun; Nixon, Stephanie.
Disability & Rehabilitation. Aug2014, Vol. 36 Issue 17, p1385-1394.
10p. Abstract: Purpose: To identify the characteristics of peer-
reviewed literature on community-based rehabilitation (CBR) in low-
and middle-income countries published in English from 2003 to
2012. Methods: This scoping review involved a systematic search of
electronic databases using specific keyword/subject heading
combinations. Journal articles were included if they were published
in English, used 'CBR' as related to rehabilitation with persons with
disabilities and not limited to high-income countries (HICs). Data
were charted according to both pre-determined and emergent
categories. A subset of articles was charted by two reviewers to
ensure reliability of variables. Results: A total of 114 articles were
included. Fifty-two articles presented empirical research and 49
were published in one of two journals. The articles represented CBR
activity in 26 specific countries, although only two of these were in
Europe and only one was in the Americas. Authors were
predominantly affiliated at universities and in HICs. Conclusions:
This scoping review identified and characterized a large pool of
literature on CBR, facilitating its incorporation into research and
practice. Future research should examine the engagement of
persons with disabilities in creating CBR literature, and analysis of
literature in languages other than English. [ABSTRACT FROM
AUTHOR] DOI: 10.3109/09638288.2013.845257. (AN: 97580401)
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live&scope=site">A scoping review of 10 years of published
literature on community-based rehabilitation.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 5
A study of human resource competencies required to implement
community rehabilitation in less resourced settingsGilmore, Brynne;
MacLachlan, Malcolm; McVeigh, Joanne; McClean, Chiedza; Carr,
Stuart; Duttine, Antony; Mannan, Hasheem; McAuliffe, Eilish; Mji,
Gubela; Eide, Arne H.; Hem, Karl-Gerhard; Gupta, Neeru. HUMAN
 RESOURCES FOR HEALTH; SEP 22 2017; 15 (AN
000411755000001)
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live&scope=site">A study of human resource competencies required
to implement community rehabilitation in less resourced
settings</A>
Base de datos: Social Sciences Citation Index

Registro: 6
A systematic review on how to conduct evaluations in community-
based rehabilitation. By: Grandisson, Marie; Hébert, Michèle;
Thibeault, Rachel. Disability & Rehabilitation. Feb2014, Vol. 36
Issue 4, p265-275. 11p. 9 Charts. Abstract: Purpose: Community-
based rehabilitation (CBR) must prove that it is making a significant
difference for people with disabilities in low- and middle-income
countries. Yet, evaluation is not a common practice and the
evidence for its effectiveness is fragmented and largely insufficient.
The objective of this article was to review the literature on best
practices in program evaluation in CBR in relation to the evaluative
process, the frameworks, and the methods of data collection.
Method: A systematic search was conducted on five rehabilitation
databases and the World Health Organization website with
keywords associated with CBR and program evaluation. Two
independent researchers selected the articles. Results: Twenty-two
documents were included. The results suggest that (1) the
evaluative process needs to be conducted in close collaboration
with the local community, including people with disabilities, and to
be followed by sharing the findings and taking actions, (2) many
frameworks have been proposed to evaluate CBR but no
agreement has been reached, and (3) qualitative methodologies
have dominated the scene in CBR so far, but their combination with
quantitative methods has a lot of potential to better capture the
effectiveness of this strategy. Conclusions: In order to facilitate and
improve evaluations in CBR, there is an urgent need to agree on a
common framework, such as the CBR matrix, and to develop best
practice guidelines based on the literature available and consensus
among a group of experts. These will need to demonstrate a good
balance between community development and standards for
effective evaluations. [ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2013.785602. (AN: 94006529)
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direct=true&db=pbh&AN=94006529&lang=es&site=eds-
live&scope=site">A systematic review on how to conduct
evaluations in community-based rehabilitation.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 7
Adaptation to disability among middle-aged and older adults: The
role of assimilative and accommodative copingBoerner, K.
JOURNALS OF GERONTOLOGY SERIES B-PSYCHOLOGICAL
SCIENCES AND SOCIAL SCIENCES; JAN 2004; 59; 1; pP35-pP42
(AN 000188208600007)
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live&scope=site">Adaptation to disability among middle-aged and
older adults: The role of assimilative and accommodative
coping</A>
Base de datos: Social Sciences Citation Index

Registro: 8
An emancipatory research on CBR and the barriers faced by
persons with disabilities. By: Deepak, Sunil; Kumar, Jayanth;
Ramasamy, Parthipan; Griffo, Giampiero. Disability & Rehabilitation.
Aug2014, Vol. 36 Issue 18, p1502-1507. 6p. Abstract: Purpose: The
aim of this research was to understand the barriers faced by
persons with disabilities in their daily lives and the role of CBR
projects in overcoming them. Method: A group of persons with
disabilities involved in CBR activities was identified and trained in
participatory research methodologies. Research was carried out,
with support from a scientific advisory group, through sharing of life
stories in residential meetings focusing on specific themes. These
meetings were attended by 368 persons with disabilities. Results:
The barriers identified ranged from isolation, neglect, abuse and
violence to lack of access to social, health, education and livelihood
opportunities. People faced their first barriers in their own families.
Families also played an important role in overcoming some barriers
at the individual level. CBR projects assisted people in overcoming
barriers mainly by providing information, by facilitating access to
existing support and by helping persons in communities to take
collective action against the barriers. The research also stimulated
 DPOs and CBR projects to identify some gaps in tackling the
barriers and to start action to overcome them. Conclusions: CBR
projects can play a role in overcoming some barriers faced by
persons with disabilities. Emancipatory research yields rich data,
facilitates ownership and possibly future sustainability. [ABSTRACT
FROM AUTHOR] DOI: 10.3109/09638288.2013.800914. (AN:
97982617)
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barriers faced by persons with disabilities.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 9
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Registro: 10
Bridging the gap: investigating challenges and way forward for
intersectoral provision of psychosocial rehabilitation in South
AfricaBrooke-Sumner, Carrie; Lund, Crik; Peterson, Inge.
INTERNATIONAL JOURNAL OF MENTAL HEALTH SYSTEMS;
MAR 9 2016; 10 (AN 000371682600001)
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live&scope=site">Bridging the gap: investigating challenges and
way forward for intersectoral provision of psychosocial rehabilitation
in South Africa</A>
Base de datos: Social Sciences Citation Index

Registro: 11
Changes in aspects of social functioning depend upon prior
changes in neurodisability in people with acquired brain injury
undergoing post-acute neurorehabilitationFortune, Donal G.; Walsh,
R. Stephen; Waldron, Brian; McGrath, Caroline; Harte, Maurice;
Casey, Sarah; McClean, Brian. FRONTIERS IN PSYCHOLOGY;
SEP 8 2015; 6 (AN 000360711200001)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000360711200001&lang=es&site=eds-
live&scope=site">Changes in aspects of social functioning depend
upon prior changes in neurodisability in people with acquired brain
injury undergoing post-acute neurorehabilitation</A>
Base de datos: Social Sciences Citation Index

Registro: 12
Clients' perspectives of rehabilitation in one acquired brain injury
residential rehabilitation unit: A thematic analysis. By: Gill, Ian J.;
Wall, Gemma; Simpson, Jane. Brain Injury. Jul2012, Vol. 26 Issue
7/8, p909-920. 12p. 1 Chart. Abstract: Primary objective: To
examine clients' perspectives on residential rehabilitation for
acquired brain injury (ABI). Research design: Qualitative semi-
structured interviews. Method: Seven individuals who resided in a
single residential rehabilitation unit for ABI were interviewed and
thematic analysis was used to identify themes in their responses.
Main outcomes and results: The analysis identified four themes:
rebuilding self-belief, reflecting participants' sense of independence
and confidence in their ability; recognition of personal identity,
including a number of personal traits; acceptance and change,
incorporating coming to terms with their ABI and identifying change;
and a sense of community atmosphere, reflecting clients' perception
of their own role and relationships with others. Conclusion: The
results provide in-depth qualitative understanding of how clients'
perceived their experience within a residential rehabilitation unit for
ABI. Implications of the results are discussed, including the
identification of potential beneficial talking therapies for clients within
this setting. [ABSTRACT FROM AUTHOR] DOI:
10.3109/02699052.2012.661118. (AN: 76488198)
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direct=true&db=pbh&AN=76488198&lang=es&site=eds-
live&scope=site">Clients' perspectives of rehabilitation in one
acquired brain injury residential rehabilitation unit: A thematic
analysis.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 13
Community-based psychosocial interventions for people with
schizophrenia in low and middle-income countries: systematic
 review and meta-analysisAsher, Laura; Patel, Vikram; De Silva,
Mary J.. BMC PSYCHIATRY; OCT 30 2017; 17 (AN
000414179900001)
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live&scope=site">Community-based psychosocial interventions for
people with schizophrenia in low and middle-income countries:
systematic review and meta-analysis</A>
Base de datos: Social Sciences Citation Index

Registro: 14
Community-based rehabilitation (CBR) monitoring and evaluation
methods and tools: a literature review. By: Lukersmith, Sue; Hartley,
Sally; Kuipers, Pim; Madden, Ros; Llewellyn, Gwynnyth; Dune,
Tinashe. Disability & Rehabilitation. Dec2013, Vol. 35 Issue 23,
p1941-1953. 13p. 3 Charts. Abstract: Purpose: To identify and
analyse tools and methods that have been reported in the literature
for the monitoring and evaluation of community-based rehabilitation
(CBR) programmes. Method: A literature review and descriptive
analysis were carried out to scope CBR monitoring and evaluation
methods and tools. A search was conducted using PubMed and
Google Scholar databases, hand searches and reference lists.
Reports were retrieved, screened and information was extracted
and analysed against research questions. Results: There were 34
reports which met the inclusion criteria. Analysis of the 34 reports
showed that most reports used demographic and programme data.
A range of methods were used: interviews, focus groups and
questionnaires being the most common. Apart from this, no
common standardised procedures or tools were identified and there
was not a standard approach to the inclusion of people with
disabilities or other CBR stakeholders. Conclusions: The findings
suggest that there would be value in creating resources such as
guidelines, common processes and checklists for monitoring and
evaluation of CBR, to facilitate efficient and comparable practices
and more comparable data. This needs to be done in partnership
with people with disabilities, CBR providers, partners and
researchers to ensure that all stakeholders' needs are understood
and met. [ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2013.770078. (AN: 91281299)
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live&scope=site">Community-based rehabilitation (CBR) monitoring
and evaluation methods and tools: a literature review.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 15
Community-based rehabilitation in Jordan: challenges to achieving
occupational justice. By: AlHeresh, Rawan; Bryant, Wendy; Holm,
Margo. Disability & Rehabilitation. Dec2013, Vol. 35 Issue 21,
p1848-1852. 5p. Abstract: Purpose: This paper presents theories of
occupational and social justice and applies the theoretical tenets to
a community-based rehabilitation (CBR) program in a Palestinian
refugee camp in Jordan. Method: The example of building a
playground for children with disabilities, and other aspects of the
social, political and cultural context in Jordan are described in
relation to the theory and practice of CBR, occupational and social
justice. Results: Key concepts are explained, analyzed and applied,
namely occupational justice, social justice, occupational form and
occupational deprivation (a strong determinant of occupational
injustice), all of which were relevant in the refugee camp where
children with disabilities were deprived of resources and chances to
play. Conclusion: Grounding CBR in an occupational justice
framework offers justification and inspiration for occupational
therapy in similar settings deprived of resources and opportunities
wherein both individuals and communities could benefit.
[ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2012.756944. (AN: 90368087)
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challenges to achieving occupational justice.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 16
Community-based rehabilitation in the People's Republic of China.
By: Zhuo, D.; Kun, Nan Deng. Disability & Rehabilitation.
Oct/Nov1999, Vol. 21 Issue 10/11, p490-494. 5p. Abstract: This
paper describes the implementation of a pilot community-based
rehabilitation (CBR) programme in a densely populated urban
centre of Guangzhou (Canton) City. The structure of the programme
utilizing the existing administrative and government structures of the
 province (Guandong), the city and the urban centre (Jin Hua Street)
and administration of the project are described. Finally, the paper
addresses some issues related to research on CBR in the People's
Republic of China (PRC). [ABSTRACT FROM AUTHOR] DOI:
10.1080/096382899297305. (AN: 4053321)
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live&scope=site">Community-based rehabilitation in the People's
Republic of China.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 17
Community-based Rehabilitation Intervention for people with
Schizophrenia in Ethiopia (RISE): study protocol for a cluster
randomised controlled trialAsher, Laura; De Silva, Mary; Hanlon,
Charlotte; Weiss, Helen A.; Birhane, Rahel; Ejigu, Dawit A.; Medhin,
Girmay; Patel, Vikram; Fekadu, Abebaw. TRIALS; JUN 24 2016; 17
(AN 000378990900003)
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live&scope=site">Community-based Rehabilitation Intervention for
people with Schizophrenia in Ethiopia (RISE): study protocol for a
cluster randomised controlled trial</A>
Base de datos: Social Sciences Citation Index

Registro: 18
Development of a Community- Based Rehabilitation Intervention for
People with Schizophrenia in EthiopiaAsher, Laura; Fekadu,
Abebaw; Hanlon, Charlotte; Mideksa, Gemechu; Eaton, Julian;
Patel, Vikram; De Silva, Mary J.. PLOS ONE; NOV 30 2015; 10; 11
(AN 000365889800047)
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 direct=true&db=edswss&AN=000365889800047&lang=es&site=eds-
live&scope=site">Development of a Community- Based
Rehabilitation Intervention for People with Schizophrenia in
Ethiopia</A>
Base de datos: Social Sciences Citation Index

Registro: 19
Do community-based rehabilitation programmes promote the
participation of persons with disabilities? A case control study from
Mandya District, in India. By: Biggeri, Mario; Deepak, Sunil; Mauro,
Vincenzo; Trani, Jean-Francois; Kumar, Jayanth; Ramasamy,
Parthipan. Disability & Rehabilitation. Aug2014, Vol. 36 Issue 18,
p1508-1517. 10p. Abstract: Purpose: In this paper, we measure the
effectiveness of Community-Based Rehabilitation (CBR)
programmes in promoting the well-being of people with disabilities
and removing the barriers to their participation in family and
community decision-making processes. Method: To evaluate the
impact of the CBR programme, we use data from a large-scale
control study in Karnataka, India. Propensity score matching is used
to evaluate the impacts on disabled persons after 2, 4 and 7 years
of entering the CBR. The theoretical framework for the analysis is
based on the CBR guidelines, which are combined with the
International Classification of Functionings (ICF), the United Nations
Convention on the Rights of People with Disabilities (UN CRPD)
and Amartya Sen's capability approach. Results: CBR has a positive
impact on the well-being of persons with disabilities participating in
the programme and particularly on their participation within the
family and the society at large. Conclusions: CBR programmes
have a multidimensional and positive impact on individual and
collective capabilities; on individual, agency and social
empowerment. [ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2013.823244. (AN: 97982616)
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promote the participation of persons with disabilities? A case control
study from Mandya District, in India.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 20
Efficacy of Community-Based Rehabilitation for Children with or at
Significant Risk of Intellectual Disabilities in Low- and Middle-
Income Countries: A Review. By: Robertson, Janet; Emerson, Eric;
 Hatton, Chris; Yasamy, M. T. Journal of Applied Research in
Intellectual Disabilities. Mar2012, Vol. 25 Issue 2, p143-154. 12p. 1
Chart. Abstract: Background Community-based rehabilitation (CBR)
is being implemented in more than 90 countries. Concerns have
been voiced about the adequacy of the evidence base regarding the
efficacy, effectiveness and efficiency of CBR. This review
summarizes evidence on the efficacy of CBR for children with
intellectual disabilities. Materials and method Electronic literature
database searches were conducted to identify articles in the English
language published since 1980 relating to the efficacy of CBR for
children with intellectual disabilities. Requests for information were
also sent to membership of International Association for the
Scientific Study of Intellectual Disabilities and relevant organizations
in selected low- and middle-income countries. Results Thirteen
studies were identified for inclusion in the review. The quality of
evidence for the efficacy of CBR for children with intellectual
disabilities was 'very low'. Conclusion Improving the evidence base
will require greater investment in evaluation and addressing the
marginalization of people with intellectual disabilities in CBR.
[ABSTRACT FROM AUTHOR] DOI: 10.1111/j.1468-
3148.2011.00679.x. (AN: 71546815)
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Children with or at Significant Risk of Intellectual Disabilities in Low-
and Middle-Income Countries: A Review.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Efficacy of Community-Based Rehabilitation for Children with or at Significant Risk of

Intellectual Disabilities in Low- and Middle-Income Countries: A Review.

Background  Community‐based rehabilitation (CBR) is being implemented in more than 90 countries.

Concerns have been voiced about the adequacy of the evidence base regarding the efficacy, effectiveness
and efficiency of CBR. This review summarizes evidence on the efficacy of CBR for children with
intellectual disabilities. Materials and method  Electronic literature database searches were conducted to
identify articles in the English language published since 1980 relating to the efficacy of CBR for children
with intellectual disabilities. Requests for information were also sent to membership of International
Association for the Scientific Study of Intellectual Disabilities and relevant organizations in selected low‐
and middle‐income countries. Results  Thirteen studies were identified for inclusion in the review. The
quality of evidence for the efficacy of CBR for children with intellectual disabilities was 'very low'.
Conclusion  Improving the evidence base will require greater investment in evaluation and addressing the
marginalization of people with intellectual disabilities in CBR.
Keywords: community‐based rehabilitation; evaluation; intellectual disabilities; children

Concern with the coverage, cost and equity of access to institution‐based rehabilitation services in low‐
and middle‐income (LAMI) countries has led to the development and promotion of community‐based
alternatives. Specifically, community‐based rehabilitation (CBR) was developed in the 1980s, 'to give
people with disabilities access to rehabilitation in their own communities using predominantly local
resources'.1 To this end, the WHO have produced training manuals for practitioners ([27]), guidelines for
monitoring and self‐assessment ([31]), sponsored evaluations of CBR ([32], [33]) and is currently
establishing a global database of CBR practice.2

Following a major review of CBR ([28]), it has recently been reconceptualized at as a strategy for
(re)habilitation, equalization of opportunity, poverty reduction and the social inclusion of people with
disabilities ([ 6]). Within this framework, the major objectives of CBR are:

•1

• 'To ensure that people with disabilities are able to maximise their physical and mental abilities, to access
regular services and opportunities, and to become active contributors to the community and society at
large.

•2

• To activate communities to promote and protect the human rights of people with disabilities through
changes within the community, for example, by removing barriers to participation' ([ 6]).

At present, it is claimed that CBR is being implemented in more than 90 countries to 'promote collaboration
among community leaders, people with disabilities, their families, and other concerned citizens to provide
equal opportunities for all people with disabilities in the community'.1 There have, however, been repeated
concerns voiced about the adequacy of the evidence base regarding the efficacy, effectiveness and
efficiency of CBR ([17]; [26]; [ 2]; [10]; [23]; [ 8]). The most comprehensive review of literature on evidence
for CBR to date notes a steady increase in articles about CBR over time, but suggests that the only aspect
covered satisfactorily is 'screening' ([ 2]). In a review of articles involving an evaluation of CBR specifically
in LAMI countries, of 30 studies reviewed, only two were impact evaluations and the rest process
evaluations ([10]). It has been suggested that much of what passes as evaluation of CBR tends to describe
practice rather than the effectiveness of that practice ([26]). As concluded by [ 2]: 'The evidence base for
CBR is, despite 25 years of experience with the concept and a growing amount of literature on the topic,
still fragmented and therefore its effectiveness cannot be sufficiently established' (p197). It has been
suggested that the context within which CBR has been developed explains in part the lack of research and
evaluation surrounding its' implementation ([17]). With need being so obvious and pressing, and both
financial and manpower resources being limited, committing resources to research and evaluation of CBR
programmes has not been a priority ([17]).

In relation to intellectual disabilities, the evidence is even more scant. [23] notes that one weakness of the
evaluation research conducted is that other than mobility disabilities, other disabilities have not been
adequately addressed. In one review of research on CBR, leprosy was the most common disability
addressed, with mention of children with intellectual disabilities being restricted to one study and one
anecdotal report of the existence of a programme in Singapore ([17]). It has been suggested that
intellectual disabilities has had a low priority in CBR projects ([15]). As noted by [15]: 'It was
understandable that local associations concentrated initially on physical disabilities. They were more
visible, easier to conceptualise, and treatment methods were more easily demonstrated. Mental handicap
was and still is poorly understood' (p435). This lack of evidence is reflected in several articles regarding the
situation in Pakistan which note the lack of effective CBR interventions for people with intellectual
disabilities ([14]; [ 7]; [16]). Indeed, in an account of the CBR approach in villages and slums in Punjab,
Pakistan ([ 7]), the authors suggest that, 'Training and education of mentally handicapped persons is an
area in which the WHO‐CBR programme in Pakistan experienced total failure' (p338).

Whilst the aforementioned literature indicates that intellectual disabilities may not have been a priority for
CBR, as yet, no attempt has been made to review the evidence for the efficacy of CBR for people with
intellectual disabilities in LAMI countries. The aim of the present review is to summarize evidence
regarding the efficacy of CBR in relation to children with intellectual disabilities in LAMI countries.

Method
Searches of electronic literature databases were conducted in June 2009 to identify peer‐reviewed articles
published from 1980 onwards in the English language, which included information from relevant studies in
LAMI countries. Eligibility for the inclusion of countries was determined by reference to the World Bank
Country Classification Table 2008.3 In this, economies are divided among income groups according to
2007 gross national income per capita, calculated using the World Bank Atlas method. The groups are as
follows: low income, $935 or less; lower middle income, $936–3705; upper middle income, $3706–11 
455; and high income, $11 456 or more.

The databases searched were as follows: Medline; Cinahl; Web of Science; and PsycINFO.

In each database, terms for intellectual disabilities and associated synonyms were identified. The most
appropriate method for searching for research from LAMI countries was also identified. These two
searches were then combined to get a pool of literature dealing with intellectual disabilities and LAMI
countries. Within this pool, specific search terms relating to the review in hand were then introduced (e.g.
rehabilitation). Full details of the search strategies and terms employed can be found in Appendix 1. In
addition, a request for information on research relevant to all three rapid reviews carried out in this series
was sent by email in April 2009 to the membership of the International Association for the Scientific Study
of Intellectual Disabilities. This enabled the identification of research literature not identified in the
electronic searches, for example, relevant articles which were 'in press'.

A request for information was also sent to relevant organizations in LAMI countries targeted in the WHO
Mental Health Gap Action Programme (mhGAP). These countries are those highlighted in bold in Appendix
2 of the mhGAP document ([30]). Informants were asked for information on current policy and practice in
their country; descriptions of relevant services in their country; and reports that have evaluated the impact
of relevant services in their country. Relevant contacts in each targeted country were identified from the
Atlas‐ID Compendium of Sources Used ([ 3]). Initially, emails were sent to contacts but in instances where
messages were returned as email addresses no longer existed, letters were sent by surface mail to the
address listed in the Atlas‐ID Compendium. Contacts were invited to reply either by email or by surface
mail.

All articles identified by searches were assessed for their relevance to the review objectives firstly by
reading abstracts. If abstracts were unavailable or did not provide enough detail to assess the relevance of
the article, the full text of the article was obtained and relevance assessed from this. Data were extracted
from the full text of articles identified as being relevant to the review. Studies were included regardless of
methodological quality. The inclusion criteria were that studies were included if they presented information
relating to the effectiveness of CBR and the sample specifically included children with intellectual
disabilities, or children with conditions associated with a high risk of intellectual disabilities. Studies were
included where samples were comprised of both adults and children. Studies were excluded if it was not
possible to ascertain that people with intellectual disabilities formed part of the sample or samples were
comprised only of adults.

Results
Thirteen studies were identified for inclusion in the review of research on the effectiveness of CBR for
children and adolescents with intellectual disabilities, and these are summarized in Table 1.

1  Summary of studies contributing to the evidence base for the efficacy of Community‐based
rehabilitation (CBR) for children with intellectual disabilities

Author Country Setting Sample size Design Outcome Main findings

(Year) measures
Zaman et al. BangladeshOne rural and 48 children Comparative Post‐intervention Rating of improvement
(1986) one urban with study of three rating on 5 point following WHO CBR training
special intellectual interventions scale (developed was highest but no
education disabilities for this study) of significant difference
school age range 2– improvement in between three interventions.
programme; 13 years: various areas Improvements in WHO CBR
4 month urban special manual group considered
training school 'remarkable' and attendance
intervention programme at training close to 100%.
based on n = 17; WHO CBR manual training
WHO CBR rural special involved travelling to training
manual school centre on six afternoons a
programme week. Concluded that
n = 14; manual was effective and
WHO CBR could be widely applied
manual
intervention
n = 17
Mariga & Zimbabwe Rural areas 297 clients Summary of Progress Progress ratings were the
McConkey of Zimbabwe enrolled on progress by summarized as following: 'outstanding' 16%;
(1987) home‐based clients over 'outstanding', 'steady' 79%; and 'little or no
learning average of 'steady', or 'little progress' 5%. The authors
programmes 12 months or no progress' acknowledge that the review
for intellectual based on based on of progress could be more
disabilities, records progress records objective. Of 136 participants
mainly maintained by (parents and helpers) in
children (18% staff review workshops, only one
aged 16+) parent found the programme
unhelpful. A minority of
clients appear to make little
progress
O'Toole Guyana Rural areas 53 pre‐school Multiple Portage Under control conditions,
(1988) of Guyana children with baseline Checklist overall gain was 0.67 items
disabilities of design with (adapted) at per month, per sub‐test.
whom 22 minimum three each home visit Under treatment conditions
(42%) noted data points and Griffiths Test the figure rose to 1.95, and
to have taken over 2  of Development at follow‐up 6 months later
epilepsy and month period prior to was 1.02. A more
intellectual in baseline programme, at conservative indication of
disabilities end of 15  progress was provided by
and 5 (9%) month Independent Evaluators (IE)
Author Country Setting Sample size Design Outcome Main findings
(Year) measures
Down's programme and based on field work journals,
syndrome 6 month follow‐ observations of children and
up. Malaise interviews with mothers.
Inventory Thirteen (25%) were judged
completed by to have made marked
mothers improvements, 6 (11%)
moderate improvements, and
6 (11%) little improvement.
The most consistent
progress was made by
physically disabled children,
with six of eight showing
'moderate/marked
improvement'. Results for
children with intellectual
disabilities were more evenly
divided between the four
categories of progress.
Mother's depression
decreased
Lagerkvist Philippines CBR 206 people Pre‐/post‐test Ability score in Increase in ability score was
(1992) and programmes with evaluation of areas such as found for each type of
Zimbabwe in Philippines disabilities ability dressing, eating, disability. Overall 78% of
and aged 5–70  talking. Pre‐ those in the Philippines and
Zimbabwe years of whom CBR measure 93% of those in Zimbabwe
34 with collected did show some improvement
intellectual retrospectively but this was based on
disabilities from verbal retrospective assessment of
aged 6–20  reports and pre‐CBR ability
years records
Thorburn Jamaica CBR 375 parents of Parental Parental report 76% of parents said that their
(1992) programme children with evaluation of child had performed better
in Jamaica all types of CBR via since being in the
disabilities questionnaire programme. Questionnaires
including were anonymous so it is not
intellectual possible to look at responses
disabilities based on different categories
of disability
Menon et al. India Four urban 90 children Pre‐/post‐test Unclear. No Presented as tables and
(1993) slums in India with evaluation of standardized charts. No statistics are
intellectual CBR outcome presented. CWs trained as
disabilities measures teachers in 3 months.
identified; four Community understanding of
community intellectual disabilities
workers increased. Reports given by
trained as community workers indicate
teachers of that parents rarely carry out
intellectual instructions given to train
disabilities; children with intellectual
nine parents
Author Country Setting Sample size Design Outcome Main findings
(Year) measures
attended disabilities in the home
training setting
Nordholm & Botswana Village in 132 people Follow‐up of Interview Not possible to extract data
Lundgren‐ Botswana with CBR recipients responses with regards to
Lindquist disabilities; by interview children/adolescents with
(1999) 22% <15  3 years after intellectual disabilities per se.
years old; programme No mention of effectiveness
33% established. for children with intellectual
intellectual Proxy disabilities
disabilities interviews
where
appropriate
McConachie BangladeshUrban and 85 children RCT of Child ability For rural children, minimal
et al. (2000) rural settings with cerebral distance using intervention group mean
in palsy training Independent IBAS z scores compared
Bangladesh randomized; (outreach), Behaviour with the norm dropped
58 followed centre‐based Assessment significantly (t = 2.78, P
up. No programme Scale (IBAS); < 0.02). In the distance
specific (urban), and maternal stress, training package, there was
mention of minimal advice Maternal a small but non‐significant
intellectual groups (rural). Adaptation to the drop in z score. The degree
disabilities Outreach Child (Judson of change was not
group had to Scale), the statistically different between
visit a distant Family Support the two groups. Mother's
centre which is Scale, and a 10‐ perception of the helpfulness
not in line with item of formal sources of support
principles of questionnaire on increased in the distance
CBR parental training group significantly
knowledge of compared to the minimal
information intervention group (t = 
related to 2.77, P < 0.02).
training manuals Differential change was not
found for three of the four
maternal variables. For
urban children, z scores did
not decline significantly for
either centre‐based or
outreach groups. Maternal
adaptation to the child
increased significantly in the
centre‐based group. There
was a non‐significant
increase in maternal stress in
both groups
Arya (2002) India Two rural 63 villages; Pre‐/post‐test Vineland Social Pooled results for SQ 41.8
areas of India 119 children evaluation of Maturity Scales pre‐ and 51.7 post‐
age 0–12 with itinerant (Social Quotient intervention (t‐test P < 
intellectual service model – SQ) 0.01). SQ significantly higher
disabilities; 11 for both 0–6 and 6–12 year
olds and for girls and boys.
Author Country Setting Sample size Design Outcome Main findings
(Year) measures
itinerant Anecdotal report of positive
teachers change in parents' attitudes
to their child with intellectual
disabilities
Sen & India Urban slums, 22 children Action Qualitative Most children benefitted from
Goldbart Kolkata and young research comments the intervention. Positive
(2005) adults with introducing changes for participants and
disabilities family‐based in family attitude noted.
including intervention Parents of children with
seven children challenging behaviours
with particularly pleased with
intellectual reduction in challenging
disabilities behaviour. One quote is
presented in relation to
positive progress for a
mother of a child with
intellectual disabilities and
severe challenging
behaviour. Conclude that
CBR is a feasible approach
to the provision of disability‐
related services in resource‐
poor environments
Hamblin & India Urban slums, 20 children Action Goals met by All of the children showed an
Musa (2006) Kolkata with cerebral research children as part improvement with the
palsy (not introducing of goal‐oriented majority of the goals being
mention of family‐based intervention; met. Parents and
intellectual rehabilitation qualitative fieldworkers all reported
disabilities) comments positive experiences of
involvement in the
programme. There is no
mention of intellectual
disabilities and the research
focuses on aspects of
physical disability
Narayan & India Existing CBR 25 middle Pre‐/post‐test Multiple choice Scores on questionnaire
Reddy programme level evaluation of questionnaire on increased from mean 70% to
(2008) in Andhra functionaries training of knowledge of mean 85%; anecdotal
Pradesh trainers intellectual reports of progress by people
programme disabilities; with intellectual disabilities
anecdotal but not clear if this includes
evidence on children. Authors note that
impact most CBR programmes
focus on aids, appliances,
physiotherapy, with minimum
focus on intellectual
disabilities
Shin et al. Vietnam Home‐based 30 children RCT of 1  Vineland Intervention group gained
(2009) intervention with year Adaptive more than the control group
intellectual intervention Behavior Scale in the VABS areas of motor
Author Country Setting Sample size Design Outcome Main findings
(Year) measures
in large city in disabilities with testing at Parent Survey skills (F = 3.9, P < 
Vietnam aged 3–6  0, 6 and 12  Form (VABS) 0.05) and daily living skills
years; 11 months (F = 2.7, P < 0.05)
teachers with over 1 year. The
experience of programme was not suitable
intellectual for all children with
disabilities intellectual disabilities with
one child excluded because
of severity of physical
disability. Input by teachers
with experience of
intellectual disabilities
reduces feasibility of
incorporating this
intervention as part of CBR
in low‐ and middle‐income
contexts
Geographically, the identified studies were conducted in India ([13]; [ 1]; [21]; [ 5]; [18]), Bangladesh ([34],
[12]), Botswana ([19]), Guyana ([20]), Jamaica ([25]), Vietnam ([24]), Zimbabwe ([11]) and one study
reports findings from both the Philippines and Zimbabwe ([ 9]). According to the World Bank Classification
of Countries, these countries include low‐income countries (Bangladesh, Vietnam, Zimbabwe), lower‐
middle‐income countries (India, Philippines, Guyana) and upper‐middle‐income countries (Botswana,
Jamaica).

Only four studies focused solely on CBR for children with intellectual disabilities ([34], [13]; [ 1]; [24]), one
study included both adults and children (predominantly children) with intellectual disabilities ([11]), and one
study focused on people with intellectual disabilities, but it is unclear to what extent the findings apply to
children ([18]). Other studies included children with intellectual disabilities as part of a larger sample of
people with varying types of disability ([20], [ 9]; [25]; [19]; [21]), and in two cases, it has been assumed
that samples of children with cerebral palsy may have included children with intellectual disabilities despite
intellectual disabilities not being specifically mentioned ([12], [ 5]).

Methodologically, two studies were randomized controlled trials (RCTs) ([12], [24]), and there was one
multiple baseline study ([20]). Other studies might be classed as pre‐/post‐test evaluations ([ 9]; [13]; [ 1];
[18]). However, in one case, the pre‐CBR measure was collected retrospectively from verbal reports and
records ([ 9]), and in two cases, pre‐/post‐measures relate to knowledge of trainers or parents rather than
the effectiveness of CBR for recipients per se ([13]; [18]). Other studies rate improvement following CBR,
one using a post‐intervention rating of improvement ([34]), one a summary of progress based on progress
records maintained by staff ([11]) and one by parental report ([25]). There were two action research studies
([21]; [ 5]). Finally, in one study, of a sample of 132 people with disabilities, 33% had intellectual disabilities
and 22% were aged under 15 years ([19]), but it is not possible to obtain information from the study with
respect to the effectiveness for children with intellectual disabilities per se.

In some cases, the interventions were not wholly in line with the principles of CBR. In one RCT ([12]), the
intervention for the outreach group involved parents attending a distant clinic to receive advice and
practice suggestions before taking manuals home. In the second RCT, the intervention involved
considerable input by teachers with experience of intellectual disabilities, reducing the feasibility of
incorporating the intervention as part of CBR in LAMI contexts ([24]). A further intervention based on the
WHO CBR manual involved travelling to a training centre by rickshaw on six afternoons a week to receive
training using the manual ([34]).

Notwithstanding the methodological issues noted previously, information relating to the effectiveness of
CBR for children with intellectual disabilities that can be extracted from the identified studies is
summarized here (in chronological order). In Bangladesh, post‐intervention rating of improvement in
various areas for three interventions for a total of 48 children with intellectual disabilities was highest for
training based on the WHO CBR manual and improvements were considered 'remarkable' ([34]). In
Zimbabwe, of 297 clients with intellectual disabilities involved in home‐based learning programmes, over
an average of 12 months, 16% made 'outstanding' progress, 79%'steady' progress, but 5% appeared to
make little or no progress ([11]). In Guyana, a group of 53 pre‐school children with a variety of disabilities,
of whom 27 appear to have intellectual disabilities, showed progress with 25% making 'marked
improvement', 11%'moderate improvement' and 11%'little improvement, with the remainder showing no
improvement or not participating ([20]). It was noted that most consistent progress was made by children
with physical disabilities with six of eight showing marked or moderate improvement, whilst results for
children with intellectual disabilities were more evenly divided between the categories of progress. In the
Philippines and Zimbabwe, in a sample of 206 people with various disabilities including 34 with intellectual
disabilities aged 6–20 years, an increase in ability score was found for each type of disability following a
CBR programme ([ 9]). In India, anecdotal reports given by community workers in an evaluation of CBR
indicated that parents rarely carried out instructions given to train children with intellectual disabilities in the
home ([13]). In Bangladesh, an RCT which followed up 58 children with cerebral palsy using the
Independent Behaviour Assessment Scale found evidence for the effectiveness of an outreach programme
based on training mothers at a clinic who were then given pictorial manuals to take home ([12]). In India,
for 119 children with intellectual disabilities, pre‐/post‐test results on the Vineland Social Maturity Scales
(Social Quotient) found significantly higher scores following an itinerant service intervention, and anecdotal
report is given of positive change in parents' attitudes to their child with intellectual disabilities ([ 1]). In
India, an action research study with a sample including seven children with intellectual disabilities notes
that most children benefitted from a family‐based intervention with positive changes for participants and in
family attitude, with one quote being presented in relation to positive progress for a mother of a child with
intellectual disabilities and severely challenging behaviour ([21]). In India, an action research study of 20
children with cerebral palsy found that all children showed an improvement following family‐based
rehabilitation ([ 5]). Finally, in Vietnam, an RCT of home‐based intervention for 30 children with intellectual
disabilities found significant gains compared to controls for motor skills and daily living skills over 1 year
although it was noted that the programme was not suitable for all children with intellectual disabilities ([24]).

In other studies, it was not possible to extract information specifically about efficacy for children with
intellectual disabilities although it was evident that samples were likely to have included children with
intellectual disabilities. It Botswana, whilst 33% of a sample of 132 people had intellectual disabilities, it
was not possible to extract any data with regards to the effectiveness of CBR for children with intellectual
disabilities per se ([19]). In Jamaica, of 375 parents of children with all types of disabilities, 76% said their
child had performed better since being in the programme, but as questionnaires were anonymous, it was
not possible to look at responses based on different types of disabilities ([25]). A study in India evaluating
the training of trainers gives anecdotal reports of progress by people with intellectual disabilities, but it was
not clear whether this includes children ([18]).

Discussion
Overall, the evidence for the effectiveness of CBR for children with intellectual disabilities is 'very low' in
terms of widely accepted hierarchies of evidence ([ 4]). Few studies have focused specifically on the
efficacy of CBR for children with intellectual disabilities, and the inclusion of evidence based on
heterogeneous samples, which include at least some children with intellectual disabilities, fails to increase
the evidence base substantially. The little evidence that is available presents a mixed picture. Whilst some
children with intellectual disabilities have been found to make progress following attempts at CBR, others
in the same studies have been found to make little progress ([11]; [20]), and one study noted that the
programme was not suitable for all children with intellectual disabilities ([24]). Further, one study reported
that parents rarely carry out instructions to train their child with intellectual disabilities in the home setting
([13]).

This does not, of course, mean that CBR is ineffective. At present, we simply do not have sufficient
evidence of sufficient quality to form a judgement with regard to efficacy, effectiveness or efficiency. This
situation is the result of two factors. Firstly, there have been repeated concerns voiced about the adequacy
of the evidence base regarding the efficacy, effectiveness and efficiency of CBR per se ([17]; [26]; [ 2]; [10];
[23]; [ 8]). Secondly, our general review of the literature indicates that children (or adults) with intellectual
disability are rarely mentioned within the existing evaluation literature. This is consistent with the 2003
WHO review of CBR ([28]) which noted that some groups are marginalized from participation in CBR and
that in many countries this includes people with psychiatric or intellectual disabilities. They propose that, 'A
council of all partners in CBR should also ensure that all people with disabilities are included, particularly
people with psychiatric or intellectual disabilities, who are traditionally left out of programmes' (p8). Further,
it is noted that, 'Certain groups of disabled persons are difficult to include, like those with multiple
disabilities and those with intellectual disabilities, so extra efforts are needed to include them. For people
with severe disabilities, like severe intellectual impairment, the social dimension is very important.
Individuals have the right to live in the community and not in an institution. Communities can provide
important support to parents of children with severe impairments, even if nothing specific can be done for
the children's impairments' (p13).

Improving the quality of the evidence base will require greater investment in evaluation and addressing the
marginalization of people with intellectual disabilities in CBR. As noted in the introduction, it has been
suggested that the context within which CBR has been developed explains in part the lack of research and
evaluation surrounding its' implementation ([17]; [23]). With need being so obvious and pressing, and both
financial and manpower resources being limited, committing resources to research and evaluation of CBR
programmes has not been a priority ([17]) and conscious efforts need to be made in the planning stage to
budget for programme evaluation ([23]). As noted in relation to people with intellectual disabilities in
Pakistan ([15]): 'The keenness of funding agencies, often far from the scene, to hear of increasing
numbers of children "reached," is seldom matched by funding for research that might show whether the
reaching brought any real and lasting benefit' (p438).

It has also been noted that quantitative evaluations, such as RCTs, may be impractical as a method of
evaluating CBR in developing countries because of, for example, lack of baseline data, the undesirability of
having controls in community settings and lack of personnel with training in quantitative methods and
statistics ([22]). [22] outlines viable qualitative alternatives to the quantitative paradigm for the evaluation of
CBR, such as participatory evaluation techniques, case studies, focus groups and key informant
interviews. However, [22] acknowledges that quantitative studies are necessary to verify findings,
suggesting that an integration of qualitative and quantitative methods offers the best form of evaluation for
CBR.

Limitations
There are a number of limitations to this review. Firstly, the search strategy may have omitted studies
where children with intellectual disabilities were included in samples of people with disabilities, but where
this was not specifically mentioned. However, in such instances, it would not have been possible to extract
data with regards to children with intellectual disabilities per se. Secondly, data extraction was carried out
by one author when ideally this process should be verified by a second researcher. Finally, the review is
restricted primarily to peer‐reviewed literature published in English and thus potentially omits evaluation
reports which may have been produced in developing countries in other languages.

Conclusion
Few studies have focused specifically on the efficacy of CBR for children with intellectual disabilities and
the quality of evidence that does exist is 'very low' in terms of widely accepted hierarchies of evidence ([
4]). Improving the quality of the evidence base will require greater investment in the evaluation of CBR and
addressing the marginalization of people with intellectual disabilities in CBR.

Acknowledgments
This work was funded by the World Health Organization. MTY is a WHO employee, but the views
expressed in this publication do not necessarily represent the decisions, policy or views of the World
Health Organization. The present authors appreciate the Shirley Foundation, Autistica represented by
Eileen Hopkins and Autism Speaks represented by Andy Shih, for supporting this work.

Conflict of interest
There are no conflicts of interest.

Correspondence
Any correspondence should be directed to Janet Robertson, Centre for Disability Research, Division of
Health Research, School of Health & Medicine, Alexandra Square, Lancaster University, Lancaster LA1
4YT, UK (e‐mail: j.m.robertson@lancaster.ac.uk).

Appendix

Appendix 1: Search Strategy

Where possible, searches were conducted using both index terms and word searches. For word searches,
synonyms for intellectual disabilities were based on the terms for intellectual disabilities as used in the
WHO intellectual disabilities Atlas (World Health Organization 2007) truncated as indicated below (*).
These were the following: Developmental disabilities (development* disab*); Intellectual disabilities
(intellectual* disab*); Learning disabilities (learning disab*); Mental deficiency (mental* deficien*); Mental
disability (mental* disab*); Mental handicap (mental* handicap*); Mental retardation (mental* retard*);
Mental subnormality (mental* subnormal*). For Web of Science, only word searches were used.

For CINAHL and MEDLINE, MeSH terms were employed in searches (+ indicates exploded term). For
intellectual disabilities and variants: (MH "Mental Retardation+") or (MH "Mental Retardation, X‐Linked+")
or (MH "Developmental Disabilities") or (MH "Mentally Disabled Persons"). For LAMI countries: (MH
"Africa+") OR (MH "Asia+") OR (MH "Europe, Eastern+") OR (MH "Central America+") OR (MH "South
America+") OR (MH "West Indies+") OR (MH "Pacific Islands+") OR (MH "Developing Countries").

In PsycINFO index terms for intellectual disabilities were searched as follows: (DE "Mental Retardation"
OR DE "Anencephaly" OR DE "Borderline Mental Retardation" OR DE "Crying Cat Syndrome" OR DE
"Downs Syndrome" OR DE "Home Reared Mentally Retarded" OR DE "Institutionalized Mentally
Retarded" OR DE "Mild Mental Retardation" OR DE "Moderate Mental Retardation" OR DE "Profound
Mental Retardation" OR DE "Psychosocial Mental Retardation" OR DE "Severe Mental Retardation" OR
DE "Tay Sachs Disease") OR (DE "Developmental Disabilities" or DE "Fetal Alcohol Syndrome" or DE
"Fragile X Syndrome" or DE "Phenylketonuria" or DE "Prader Willi Syndrome" or DE "Rett Syndrome" or
DE "Williams Syndrome"). PSYCINFO index terms for LAMI countries were searched as follows: (ZY
"afghanistan") or (ZY "africa") or (ZY "albania") or (ZY "algeria") or (ZY "american samoa") or (ZY "angola")
or (ZY "armenia") or (ZY "asia") or (ZY "azerbaijan") or (ZY "bangladesh") or (ZY "belarus") or (ZY
"bhutan") or (ZY "bolivia") or (ZY "bosnia‐herzegovina") or (ZY "burkina faso") or (ZY "burundi") or (ZY
"cambodia") or (ZY "cameroon") or (ZY "cape verde") or (ZY "cape verde islands") or (ZY "central african
republic") or (ZY "central america") or (ZY "chad") or (ZY "china") or (ZY "colombia") or (ZY
"commonwealth of independent states") or (ZY "comoros") or (ZY "cuba") or (ZY "democratic republic of
congo") or (ZY "djibouti") or (ZY "dominican republic") or (ZY "east timor") or (ZY "eastern europe") or (ZY
"ecuador") or (ZY "egypt") or (ZY "el salvador") or (ZY "equatorial guinea") or (ZY "eritrea") or (ZY
"ethiopia") or (ZY "fiji") or (ZY "gambia") or (ZY "georgia") or (ZY "ghana") or (ZY "guatemala") or (ZY
"guinea") or (ZY "guinea‐bissau") or (ZY "guyana") or (ZY "haiti") or (ZY "honduras") or (ZY "india") or (ZY
"indonesia") or (ZY "iran") or (ZY "iraq") or (ZY "ivory coast") or (ZY "jamaica") or (ZY "jordan") or (ZY
"kenya") or (ZY "kiribati") or (ZY "korea") or (ZY "kyrgystan") or (ZY "laos") or (ZY "lesotho") or (ZY "liberia")
(ZY "madagascar") or (ZY "malawi") or (ZY "maldives") or (ZY "mali") or (ZY "marshall islands") or (ZY
"mauritania") or (ZY "micronesia (federated states of)") or (ZY "moldova") or (ZY "mongolia") or (ZY
"mozambique") or (ZY "myanmar") or (ZY "namibia") or (ZY "nepal") or (ZY "nicaragua") or (ZY "niger") or
(ZY "nigeria") or (ZY "north korea") or (ZY "north vietnam") or (ZY "oceania/pacific islands") or (ZY
"pakistan") or (ZY "papua new guinea") or (ZY "paraguay") or (ZY "peru") or (ZY "philippines") or (ZY
"republic of congo") or (ZY "rwanda") or (ZY "samoa") or (ZY "senegal") or (ZY "sierra leone") or (ZY
"solomon islands") or (ZY "somalia") or (ZY "south korea") or (ZY "sri lanka") or (ZY "sudan") or (ZY
"surinam") or (ZY "suriname") or (ZY "swaziland") or (ZY "syria") or (ZY "tajikistan") or (ZY "thailand") or
(ZY "tibet") or (ZY "togo") or (ZY "tonga") or (ZY "tunisia") or (ZY "turkmenistan") or (ZY "uganda") or (ZY
"ukraine") or (ZY "uruguay") or (ZY "uzbekistan") or (ZY "vanuatu") or (ZY "vietnam") or (ZY "west indies")
or (ZY "yemen") or (ZY "zambia") or (ZY "zimbabwe").

In all databases, the search terms employed for identifying research relevant to the effectiveness of CBR
for children and adolescents were as follows: rehabilitat*; community; service*; interven*.

Footnotes
1 http://www.who.int/disabilities/cbr/en/

2 http://www.who.int/disabilities/cbr/global%5fdatabase%5fform/en/index.html

3 http://data.worldbank.org/about/country-classifications/country-and-lending-groups

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~~~~~~~~
By Janet Robertson; Eric Emerson; Chris Hatton and M. T. Yasamy

Reported by Author; Author; Author; Author

Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and
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Expert consensus on best evaluative practices in community-based
rehabilitation. By: Grandisson, Marie; Thibeault, Rachel; Hébert,
Michèle; Cameron, Debra. Disability & Rehabilitation. Mar2016, Vol.
38 Issue 5, p499-510. 12p. 2 Diagrams, 7 Charts, 1 Graph.
Abstract: Purpose: The objective of this study was to generate
expert consensus on best evaluative practices for community-based
rehabilitation (CBR). This consensus includes key features of the
evaluation process and methods, and discussion of whether a
shared framework should be used to report findings and, if so,
which framework should play this role.Method: A Delphi study with
two predefined rounds was conducted. Experts in CBR from a wide
range of geographical areas and disciplinary backgrounds were
recruited to complete the questionnaires. Both quantitative and
qualitative analyses were performed to generate the
recommendations for best practices in CBR evaluation.Results: A
panel of 42 experts reached consensus on 13 recommendations for
best evaluative practices in CBR. In regard to the critical qualities of
sound CBR evaluation processes, panellists emphasized that these
processes should be inclusive, participatory, empowering and
respectful of local cultures and languages. The group agreed that
evaluators should consider the use of mixed methods and
participatory tools, and should combine indicators from a universal
list of CBR indicators with locally generated ones. The group also
agreed that a common framework should guide CBR evaluations,
and that this framework should be a flexible combination between
the CBR Matrix and the CBR Principles.Conclusions: An expert
panel reached consensus on key features of best evaluative
practices in CBR. Knowledge transfer initiatives are now required to
develop guidelines, tools and training opportunities to facilitate CBR
program evaluations.Implications for RehabilitationCBR evaluation
processes should strive to be inclusive, participatory, empowering
and respectful of local cultures and languages.CBR evaluators
should strongly consider using mixed methods, participatory tools, a
combination of indicators generated with the local community and
with others from a bank of CBR indicators.CBR evaluations should
be situated within a shared, but flexible, framework. This shared
framework could combine the CBR Matrix and the CBR Principles.
[ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2015.1044030. (AN: 112192716)
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direct=true&db=pbh&AN=112192716&lang=es&site=eds-
live&scope=site">Expert consensus on best evaluative practices in
community-based rehabilitation.</A>
Base de datos: Psychology and Behavioral Sciences Collection

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Global Mental Health 3 - Treatment and prevention of mental
disorders in low-income and middle-income countriesPatel, Vikram;
Aroya, Ricardo; Chatterjee, Sudipto; Chisholm, Dan; Cohen, Alex;
De Silva, Mary; Hosman, Clemens; McGuire, Hugh; Rojas,
Graciela; van Ommeren, Mark. LANCET; SEP 15 2007; 370; 9591;
p991-p1005 (AN 000249506500031)
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live&scope=site">Global Mental Health 3 - Treatment and
prevention of mental disorders in low-income and middle-income
countries</A>
Base de datos: Social Sciences Citation Index

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Goal setting and strategies to enhance goal pursuit for adults with
acquired disability participating in rehabilitationLevack, William M.
M.; Weatherall, Mark; Hay-Smith, E. Jean C.; Dean, Sarah G.;
McPherson, Kathryn; Siegert, Richard J.. COCHRANE DATABASE
OF SYSTEMATIC REVIEWS; 2015; 7 (AN 000360647800045)
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live&scope=site">Goal setting and strategies to enhance goal
pursuit for adults with acquired disability participating in
rehabilitation</A>
 Base de datos: Social Sciences Citation Index

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Hospital Utilization among Persons with an Intellectual Disability,
Ontario, Canada, 1995–2001. By: Balogh, Robert S.; Hunter,
Duncan; Ouellette‐Kuntz, Hélène. Journal of Applied Research in
Intellectual Disabilities. 2005, Vol. 18 Issue 2, p181-190. 10p.
Abstract: It has been suggested that persons with an intellectual
disability consume a disproportionate amount of hospital services.
Policy changes in Ontario in the 1970s and 1980s made it
necessary for community health services to accommodate this
population that formerly received most of its medical care in the
institutions where they lived. It is frequently suggested that
community health services are currently inadequate to care for this
population.The study was a retrospective analysis of routinely
collected hospitalization data for persons living in Ontario with an
intellectual disability, between 1995 and 2001.A substantial
proportion of hospitalizations of persons with an intellectual
disability were for mental disorders and dental diseases. Of all in-
hospital stays, one-third were for mental disorders such as
schizophrenia and depression. Of all day-surgery admissions,
almost 40% were for dental diseases corresponding to a high rate of
dental procedures. The study also identified high ambulatory care-
sensitive condition hospitalization rates. In-hospital surgical
procedure rates, however, were low.This study is the first to fully
describe patterns of hospitalization for persons with an intellectual
disability in Ontario, Canada. A recurring finding is the large
discrepancy between statistics for persons with an intellectual
disability and published data for the general population. The study
limitations mean further research is required to confirm the results
and to determine if persons with an intellectual disability are
receiving the health care they are entitled to in Ontario. [ABSTRACT
FROM AUTHOR] DOI: 10.1111/j.1468-3148.2005.00247.x. (AN:
17045734)
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direct=true&db=pbh&AN=17045734&lang=es&site=eds-
live&scope=site">Hospital Utilization among Persons with an
Intellectual Disability, Ontario, Canada, 1995–2001.</A>
Base de datos: Psychology and Behavioral Sciences Collection
 Hospital Utilization among Persons with an Intellectual Disability, Ontario, Canada,
1995–2001.

Background  It has been suggested that persons with an intellectual disability consume a disproportionate
amount of hospital services. Policy changes in Ontario in the 1970s and 1980s made it necessary for
community health services to accommodate this population that formerly received most of its medical care
in the institutions where they lived. It is frequently suggested that community health services are currently
inadequate to care for this population. Methods  The study was a retrospective analysis of routinely
collected hospitalization data for persons living in Ontario with an intellectual disability, between 1995 and
2001. Results  A substantial proportion of hospitalizations of persons with an intellectual disability were for
mental disorders and dental diseases. Of all in‐hospital stays, one‐third were for mental disorders such as
schizophrenia and depression. Of all day‐surgery admissions, almost 40% were for dental diseases
corresponding to a high rate of dental procedures. The study also identified high ambulatory care‐sensitive
condition hospitalization rates. In‐hospital surgical procedure rates, however, were low. Interpretation  This
study is the first to fully describe patterns of hospitalization for persons with an intellectual disability in
Ontario, Canada. A recurring finding is the large discrepancy between statistics for persons with an
intellectual disability and published data for the general population. The study limitations mean further
research is required to confirm the results and to determine if persons with an intellectual disability are
receiving the health care they are entitled to in Ontario.

Keywords: developmental disability; health care; hospitalization; intellectual disability; mental retardation

Persons with an intellectual disability, defined as 'a condition of mental impairment present or occurring
during a person's formative years, that is associated with limitations in adaptive behaviour' ([21]), represent
approximately 1% of the population in Ontario, Canada ([22]). The life expectancy of this population has
increased over the years and so have age‐related health concerns ([13]). There is evidence that persons
with an intellectual disability experience a higher rate of health problems than the general population with
an associated disproportionate health care expenditure ([13]). Little is known about the prevalence of
disease and hospital utilization of persons with an intellectual disability living in Ontario, Canada.
Information on these issues could help guide future research and policy decisions that affect this
population.

Policy changes by the Ontario government in the 1970s and 1980s led to a shift from institutional
residences for persons with an intellectual disability to community‐based homes ([19], [20]). It was
assumed that the community‐based health services would be able to handle the influx of these new
habitants. A similar shift in policy occurred in the United States and it has been suggested that the transfer
of a large number of persons with an intellectual disability from institutions to the community has led to
inferior care ([29]).

Ontario is one of the 10 provinces of Canada and its most populous with 11.4 million inhabitants. It is
Canada's second largest province with a surface area of 1 million square kilometres. The provision of
health services for Ontarians comes under the jurisdiction of the provincial government; however, the
government of Canada has legislated principles that guide provincial management of health care. Each of
the provinces administers a health insurance plan that provides universal and comprehensive coverage for
medically necessary hospital, inpatient and outpatient physician services.

Although very few studies have looked at hospital utilization data for persons with an intellectual disability,
there is evidence that this population uses hospital resources at a higher rate than the general population
([ 4]; [ 1]; [17]; [24]; [ 7]). Studies from the Netherlands found that of all diagnostic groups, people
diagnosed with an intellectual disability accounted for the highest proportion of health care costs ([15];
[23]). The higher health care costs for this population may stem from higher rates of health problems
requiring medical attention. An Australian study determined the frequency of medical disorders in a random
sample of persons with an intellectual disability living in northern Sydney, and reported that the study group
had an increased number of chronic diseases that were frequently not recognized or, when diagnosed, not
treated appropriately ([ 2]). These issues likely influence the use of hospital‐based health services.

This study uses existing data sources to assess hospital utilization by generating information on diagnoses
most responsible for hospitalization, procedures performed during hospitalization, and ambulatory care‐
sensitive conditions. Ambulatory care‐sensitive conditions (also known as preventable admissions) are
medical conditions used as a marker of access to appropriate primary care ([10]). They include chronic
conditions such as diabetes, asthma, and hypertension. These conditions are expected to be managed by
patients who are active in their own care, with help from physicians and other health care professionals.
There is evidence to suggest that a high rate of hospitalizations for these conditions may reflect problems
with access to preventative or primary care programmes ([ 8]). The rationale is that proper primary care for
certain conditions should delay the progression of the disease or prevent serious complications and thus
prevent hospitalization. The purpose of the study is to describe the hospital utilization patterns among
persons with an intellectual disability living in Ontario, Canada.

Methods
The original database used in the study included all records of hospitalizations in Ontario for residents with
an intellectual disability, ≥15 years of age between April 1995 and March 2001. Data were obtained from
the Discharge Abstract Database that contains clinical information on all patients treated in hospitals (acute
care, rehabilitation, long term care, psychiatric and day surgery) and was made available by the Canadian
Institute for Health Information. Persons ≥15 years of age were chosen because some individuals with an
intellectual disability are not identified until 10–12 years of age.

Records for in‐hospital and day surgery visits of persons with an intellectual disability were extracted using
the following International Classification of Diseases (ICD) (9th revision) diagnostic codes ([28]):
intellectual development delay (315.9), mental retardation (319), mild (317), moderate (318.0), severe
(318.1), and profound (318.2) mental retardation. Records for persons with Down's syndrome (758.0),
autism (299.0), foetal alcohol syndrome (760.71), and Rett's syndrome (330.8) were also included because
these frequently cause intellectual disability. Data from records of patients with these diagnostic codes
were included for analysis where these diagnostic codes were given for the diagnosis most responsible for
hospitalization or for a comorbidity. A comorbidity can be defined as a diagnosis which is given to a patient
in addition to the diagnosis most responsible for hospitalization. Similar to the diagnosis most responsible
for hospitalization, a comorbidity is identified by a physician and is transcribed into hospital records by
hospital technicians using the ICD‐9. A scrambled unique identifier was used to identify all admissions for a
given person.

All analyses were conducted using procedures written in Statistical Analysis Software ([25]). The study
used frequency distributions to describe the records of persons with an intellectual disability ≥15 years of
age. These include a bar graph of age distribution by gender, a table of ICD‐9 diagnoses most responsible
for in‐hospital stay by gender, and a table of ICD‐9 diagnoses most responsible for day surgery admission
by gender.

Procedure rates were calculated by dividing the average number of procedures per year by the number of
persons with an intellectual disability (aged 20–64 years) in Ontario obtained from the Ministry of
Community, Family, and Children's Services multiplied by 100 000. The Canadian Classification of
Procedure codes corresponding to the following procedures were identified from the study database and
the counts were used for rate numerators: hip (93.51, 93.59) and knee replacements (93.41), peripheral
vascular surgery (51.29, 51.25), coronary artery bypass grafting (48.1), abdominal aortic aneurysm repair
(50.24, 50.34, 51.25), and carotid endarterectomy (50.12) ([10]). The preceding list includes major
procedures performed during in‐hospital stays and were selected for analysis because they are common in
the general population and have rates available in the literature for Ontario. Rates for dental procedures
were also calculated since they are the most common procedures provided for persons with an intellectual
disability living in Ontario. Dental procedures primarily take place in day surgery hospitals. The codes for
dental procedures are: surgical extraction of tooth (35.09, 35.19), restoration of tooth by filling or other
(35.2, 35.49), and dental scaling, polishing, and debridement (10.64). Procedure rate calculations included
day surgery, in‐hospital, and acute and non‐acute admissions. Exclusion criteria included cancelled
procedures, procedures occurring during prior admissions, and admissions of persons >64 or <20 years
of age. This age range corresponds to the age range of persons included in the database from the Ministry
of Community, Family, and Children's Services.

Rates for ambulatory care‐sensitive conditions were calculated by first identifying the following ICD‐9
codes for conditions 'most responsible for hospitalization' as coded by the discharge physician: diabetes
(250), alcoholic psychoses (291), drug psychoses (292), neurotic disorders (300), alcohol dependence
syndrome (303), drug dependence (304), non‐dependent abuse of drugs (305), depressive disorder not
elsewhere classified (311), essential hypertension (401), hypertensive heart disease (402), hypertensive
renal disease (403), hypertensive heart and renal disease (404), secondary hypertension (405), and
asthma (493) ([ 8]). Rates were calculated by dividing the average number for ambulatory care‐sensitive
conditions per year by the number of persons with an intellectual disability in Ontario obtained from the
Ministry of Community, Family, and Children's Services multiplied by 100 000. Only inpatient acute care
hospitalizations were included in rate calculations ([ 8]). To match the age range of data obtained from the
Ministry of Community, Family, and Children's Services, records for persons >64 or <20 years of age
were excluded from the analysis.

In order to account for the contribution of possible changes in the age and sex structure of the hospital or
day surgery population, age–gender‐adjusted rates for ambulatory care‐sensitive conditions, dental
procedures, and hip replacements were calculated using the direct method of adjustment and 1996 census
population estimates of Ontario ([26]).

Ethical approval for this study was obtained from the Queen's University Health Sciences & Affiliated
Teaching Hospitals Research Ethics Board and the Canadian Institute for Health Information.

Results

Age‐gender distribution of hospitalizations

Figure 1 shows the age–gender distribution of Ontario hospitalizations (n = 48 960) for persons with
an intellectual disability over the 6‐year study period. The highest proportion of hospitalizations was for
persons 40–44 years of age (female 13.1%, males 11.7%). There were slightly more hospitalizations for
males (female 46%, male 54%).

Graph: 1 Age distribution (>15 years) by gender for all Ontario hospitalizations for persons with an
intellectual disability living in Ontario, April 1995 to March 2001 (n = 48 960).

In‐hospital stays by diagnoses and gender

Table 1 shows the distribution of in‐hospital stays (n = 34 549) by diagnosis most responsible for
hospitalization and gender. Approximately one‐third of hospitalizations of persons with an intellectual
disability were for mental disorders. Of these, depression (6.1%), schizophrenia (10.4%) and 'other mental
disorders' (14.2%) were the most common. Diseases of the respiratory system (8.8%) and 'injury and
poisoning' (8.5%) were the second and third most common diagnoses. Men were more likely than women
to be hospitalized for gastrointestinal diseases (7.1% vs. 4.9%) and urinary disorders (3.2% vs. 1.8%).
Women were three times more likely than men to be admitted for genital disorders (1.5% vs. 0.5%).
Otherwise, men and women were evenly distributed between diagnoses, with the exception of
'complications of pregnancy and childbirth'.

1 ICD‐9 diagnosis most responsible for in‐hospital stay frequencies by gender, persons with an intellectual
disability aged >15 years, Ontario, April 1995 to March 2001 (n = 34 549)

ICD Chapter ICD‐9 Diagnosis FemalesMales Total

n % (col) n % n %
(col) (col)
Infectious and parasitic diseases 0–139 Infection 171 1.05 249 1.36 420 1.22
Neoplasms 140–208 Malignant neoplasm 297 1.83 350 1.92 647 1.87
210–230 Benign neoplasm 74 0.45 43 0.24 117 0.34
Other carcinomas 25 0.15 22 0.12 47 0.14
Endocrine, metabolic, and nutritional 250 Diabetes 319 1.96 270 1.48 589 1.70
diseases and immunity disorders
Other endocrine diseases 296 1.82 312 1.71 608 1.76
Diseases of the blood and blood forming 280‐289 Blood diseases 59 0.36 94 0.51 153 0.44
organs
Mental disorders 290 Dementia 19 0.12 16 0.09 35 0.10
291–292, 303–305 drugs and alcohol 29 0.18 33 0.18 62 0.18
295 Schizophrenia 1640 10.08 1961 10.73 3601 10.42
296 Depression 1256 7.72 855 4.68 2111 6.11
300 Anxiety 319 1.96 230 1.26 549 1.59
317–319 mental retardation 193 1.19 282 1.54 475 1.37
Other mental disorders 2503 15.38 2408 13.18 4911 14.21
Diseases of the nervous system and 320–359 Neurological disorders 727 4.47 1045 5.72 1772 5.13
sense organs
360–379 Eye disorders 64 0.39 97 0.53 161 0.47
380–389 Ear disorders 34 0.21 49 0.27 83 0.24
Diseases of the circulatory system 401–405 Hypertension 18 0.11 35 0.19 53 0.15
410–414 Coronary heart disease 149 0.92 312 1.71 461 1.33
428–429 Heart failure 168 1.03 221 1.21 389 1.13
430–438 Stroke 150 0.92 189 1.03 339 0.98
Other circulatory diseases 283 1.74 384 2.10 667 1.93
Diseases of the respiratory system 490–496 Asthma and other COPD 289 1.78 302 1.65 591 1.71
Other respiratory diseases 1007 6.19 1452 7.94 2459 7.12
Diseases of the digestive system 520–529 Dental diseases 116 0.71 137 0.75 253 0.73
531–569 Gastrointestinal diseases 804 4.94 1297 7.10 2101 6.08
570–579 Liver, gall, pancreatic diseases 444 2.73 437 2.39 881 2.55
Diseases of the genitourinary system 580–599 Urinary disorders 299 1.84 591 3.23 890 2.58
600–629 Genital disorders 237 1.46 83 0.45 320 0.93
Complications of pregnancy childbirth 630–676 Complications of 493 3.03 493 1.43
and the puerperium pregnancy and childbirth
Diseases of the skin and subcutaneous 680–709 Skin diseases 185 1.14 344 1.88 529 1.53
tissue
Diseases of connective tissue and 710–739 Musculoskeletal 298 1.83 357 1.95 655 1.90
musculoskeletal system diseases
Congenital anomalies 740–779 Perinatal/congenital 100 0.61 119 0.65 219 0.63
conditions
ICD Chapter ICD‐9 Diagnosis FemalesMales Total
n % (col) n % n %
(col) (col)
Symptoms, signs, and ill‐defined 780–799 Ill‐defined conditions 1113 6.84 1374 7.52 2487 7.20
conditions
Injury and poisoning 800–999 Injury and poisoning 1421 8.73 1530 8.37 2951 8.54
V‐codes: supplementary classification 673 4.14 794 4.34 1467 4.25
Invalid ICD‐9 codes 1 0.01 2 0.01 3 0.01
Total 16 273 47.10 18 52.90 34  100
276 549
Day surgery stays by diagnoses and gender
Table 2 presents all day surgery stays (n = 14,411) by diagnosis most responsible for hospitalization
and by gender. The most common reason for day surgery for persons with an intellectual disability was for
dental diseases (39%). The next most common reason for day surgery was gastrointestinal diseases
(9.7%). In general men and women were equally likely to have day surgery with exceptions for
gastrointestinal diseases (men 11.2% vs. women 7.9), urinary disorders (men 7.6% vs. women 3.8%) and
genital disorders (women 5.4% vs. men 1.4%).

2 ICD‐9 diagnosis most responsible for day surgery stay frequencies by gender, persons with an
intellectual disability aged >15 years, Ontario, April 1995 to March 2001 (n = 14 411)

ICD‐Chapter ICD‐9 Diagnosis FemalesMales Total

n % (col) n % n %
(col) (col)
Infectious and parasitic diseases 0–139 Infection 21 0.32 19 0.24 40 0.28
Neoplasms 140–208 Malignant neoplasm 95 1.47 149 1.88 244 1.69
210–230 Benign neoplasm 89 1.37 122 1.54 211 1.46
Other carcinomas 33 0.51 15 0.19 48 0.33
Endocrine, metabolic, and nutritional 250 Diabetes 34 0.52 53 0.67 87 0.60
diseases and immunity disorders
Other endocrine diseases 125 1.93 119 1.50 244 1.69
Diseases of the blood and blood forming 280–289 Blood diseases 75 1.16 72 0.91 147 1.02
organs
Mental disorders 290 Dementia 0 0 0 0 0 0
291–292, 303–305 drugs and alcohol 0 0 0 0 0 0
295 Schizophrenia 29 0.45 1 0.01 30 0.21
296 Depression 84 1.30 19 0.24 103 0.71
300 Anxiety * * * * 8 0.06
317–319 Mental retardation 12 0.19 8 0.10 20 0.14
Other mental disorders 26 0.40 37 0.47 63 0.44
Diseases of the nervous system and 320–359 Neurological Disorders 72 1.11 94 1.19 166 1.15
sense organs
360–379 Eye disorders 337 5.20 331 4.17 668 4.64
380–389 Ear disorders 154 2.38 194 2.45 348 2.41
Diseases of the circulatory system 401–405 Hypertension * * * * * 0.01
410–414 Coronary heart disease 10 0.15 22 0.28 32 0.22
428–429 Heart failure * * * * * 0.01
430–438 Stroke * * * * 7 0.05
Other circulatory diseases 71 1.10 112 1.41 183 1.27
Diseases of the respiratory system 490–496 Asthma and other COPD* * * * 7 0.05
Other respiratory diseases 56 0.86 90 1.13 146 1.01
Diseases of the digestive system 520–529 Dental diseases 2479 38.26 3198 40.32 5677 39.39
ICD‐Chapter ICD‐9 Diagnosis FemalesMales Total
n % (col) n % n %
(col) (col)
531–569 Gastrointestinal diseases 512 7.90 886 11.171398 9.70
570–579 Liver, gall, pancreatic diseases 95 1.47 75 0.95 170 1.18
Diseases of the genitourinary system 580–599 Urinary disorders 244 3.77 602 7.59 846 5.87
600–629 Genital disorders 351 5.42 107 1.35 458 3.18
Complications of pregnancy childbirth 630–676 Complications of 74 1.14 0 0 74 0.51
and the puerperium pregnancy and childbirth
Diseases of the skin and subcutaneous 680–709 Skin diseases 77 1.19 135 1.70 212 1.47
tissue
Diseases of connective tissue and 710–739 Musculoskeletal 127 1.96 165 2.08 292 2.03
musculoskeletal system diseases
Congenital anomalies 740–779 Perinatal/congenital 36 0.56 63 0.79 99 0.69
conditions
Symptoms, signs, and ill‐defined 780–799 Ill‐defined conditions 242 3.74 308 3.88 550 3.82
conditions
Injury and poisoning 800–999 Injury and poisoning 145 2.24 194 2.45 339 2.35
V‐codes: supplementary classification 766 11.82 725 9.14 1491 10.35
Invalid ICD‐9 codes 0 0 0 0 0 0
Total 6479 100 7932 100 14  100
411
1 *Suppressed because of low cell count.

Ambulatory care‐sensitive conditions

Females between 20 and 64 years of age were hospitalized 1039 times for ambulatory care‐sensitive
conditions, an annual rate of 1188 per 100 000 women with an intellectual disability living in Ontario. The
related rate for males, 826 per 100 000, was substantially lower than for women. In total there were 1984
hospitalizations for ambulatory care‐sensitive conditions or an age‐gender adjusted rate of 1018 per 100 
000.

Rates for selected procedures

Table 3 presents selected procedure rates in Ontario hospitals between April 1995 and March 2001 for
persons with an intellectual disability. The counts for coronary artery bypass grafting surgery, peripheral
vascular surgery, and abdominal aortic aneurysm repair were too low to report. During the same time
period, no carotid endarterectomies were performed. Among the selected procedures, dental procedures
were the most common (crude rate = 2553 per 100 000; age‐gender adjusted rate = 2534 per
100 000 population). Hip replacements were the second most common procedure (crude rate = 30
per 100 000; age–gender adjusted rate = 34 per 100 000 population).

3 Frequency for selected procedures, persons with an intellectual disability aged 20–64 years, all Ontario
hospitals, April 1995 to March 2001 (n = 40 834)

Procedures Females Males Total

n Rate per 100 000n Rate per 100 000n Rate per 100 000
Dental procedures 2244 2566.22909 2543.25153 2553.2
Hip replacement 32 36.6 29 25.4 61 30.2
Knee replacement 5 5.7 5 4.4 10 5.0
Coronary artery bypass surgery * * * * * *
Peripheral vascular surgery * * * * * *
Abdominal aortic aneurysm repair* * * * * *
Carotid endarterectomy 0 0 0 0 0 0
• 2 Excludes admissions for persons >64 and <20 years of age, cancelled surgeries, and persons
whose surgery occurred prior to this hospitalization. Includes in‐hospital, day surgery, acute and non‐
acute care admissions.

• 3 *Suppressed because of low cell count.

Discussion

Summary of results
The main findings were that a substantial proportion of persons with an intellectual disability were
hospitalized for mental disorders and dental diseases. Of all in‐hospital stays, one‐third were for mental
disorders such as schizophrenia and depression. Of all day surgery admissions, almost 40% were for
dental diseases corresponding to a high rate of dental procedures. The study also found a high ambulatory
care‐sensitive condition hospitalization rate. In‐hospital surgical procedure rates, however, were low.

Limitations of the method

Before any conclusions may be drawn, there are limitations to discuss that may have affected the results.
These include the use of routinely collected hospitalization data; the identification of persons with an
intellectual disability; the exclusion criteria used in rate calculations; and the use of counts of events rather
than individuals when calculating rates.

This analysis was based on routinely collected hospitalization data which was not primarily collected for
research purposes. A review of studies assessing the quality of the data included in hospitalization
databases identified possible limitations ([10]). Specifically, hospital data on diagnosis most responsible for
hospitalization varies in completeness and accuracy depending on the condition. Variation in coding is
more likely for conditions which are difficult to diagnose. The diagnostic categories used in Tables 1 and 2
are broad compared to definitions of disease reported in the review. It has been reported that while
categorizing diseases to specific diagnoses (e.g. asthma) is variable, broad categories that include many
diseases (e.g. chronic obstructive respiratory disease) lead to less variability ([27]).

There is also a possible problem with the coding of comorbidities. Reports indicate that comorbidities are
less likely to be recorded on the chart or abstracted; hence, the data on the hospital discharge abstract
generally underestimates the presence of comorbidities ([10]). This is significant in the context of
identifying persons with an intellectual disability from the Discharge Abstract Database. It is possible that a
number of individuals with an intellectual disability were not identified as such by the hospital during the
hospitalization and thus coding for the comorbidity did not occur. Where possible, this was avoided by
using the unique identifier to identify all hospitalizations for a given person and including all records for
individuals who were identified at least once as having an intellectual disability. A sub‐analysis of study
data showed that up to 50% of records included in the study did not correctly identify a person with an
intellectual disability though they were identified at least once with such a comorbidity. It was not possible
to give a good estimate of how many individuals with intellectual disabilities were excluded from the
analysis altogether because they were never identified as having a disability when admitted to hospital. It
should be noted that the majority of persons missing from the database probably had milder disabilities. It
is possible that the results of the study should be generalized only to individuals who are more severely
affected. To avoid this limitation and confirm the results of the present study, future research should
consider using a prospective methodology where the hospitalization data of a cohort of individuals with
intellectual disabilities is collected.

The rate calculations for procedures and ambulatory care‐sensitive condition hospitalizations excluded
persons >64 years of age. We were limited by the database made available by the Ministry of
Community, Family, and Children's Services for the denominator data. The Ministry keeps this register in
order to track individuals with an intellectual disability receiving benefits. A small number of persons would
be excluded from the register including those that refuse funding. An alternative was to estimate the
number of individuals in Ontario but this could invalidate results because estimates of the prevalence of
intellectual disabilities may not be accurate and the age gender distribution is not well known.

Consistent with measures of regional variation in the literature, the study refers to counts of events rather
than individuals when calculating ambulatory care‐sensitive condition and procedure rates ([10]; [ 9]). The
rates may be inflated for this reason but permit comparisons with results for the general population.

Interpretation of findings
This study found that 34% of hospitalizations for persons with an intellectual disability were for mental
diseases, substantially higher than the 7% of hospitalizations found in the general population ([11]). This
finding was not unexpected because persons with an intellectual disability have a higher reported
prevalence of psychiatric illness than the general population ([ 6]). It is estimated that 36% of persons with
an intellectual disability have a mental disease, compared to 18% for the general population ([ 5]; [12];
[18]). This may explain in part why persons with an intellectual disability were much more likely to be
hospitalized than the general population. Whether all psychiatric hospitalizations for this population are
appropriate is unknown and should be studied further.

This study found a substantial percentage (39%) of day surgery hospitalizations were for dental diseases.
This finding can be explained by the frequent need to sedate or anaesthetize persons with an intellectual
disability in order to carry out dental procedures safely. It is unknown if all day surgery admissions for
dental work for persons with an intellectual disability are appropriate.

Persons with an intellectual disability were hospitalized for ambulatory care‐sensitive conditions at a rate of
1018 per 100 000 population. This was three times higher than the age‐gender adjusted rate reported for
the general population of Ontario (345 per 100 000 population) ([ 9]). While not all hospitalizations can be
avoided, there is evidence that high ambulatory care‐sensitive condition hospitalization rates may reflect
problems with access to appropriate primary care ([ 3]; [ 8]). Persons with an intellectual disability may
have difficulty managing their own care which may explain in part the differences in rates between the
general population and this population. This suggests the need for an alternative level of health care for
this population to assist in the management of health problems.

The major in‐hospital surgical procedure rates reported in this study are substantially lower than the age‐
gender adjusted rates reported for the general population. The hip replacement rate in this study was 34
per 100 000 population and for the general population it is 82 per 100 000 population ([10]). The knee
replacement rate was five per 100 000 population, 14 times lower than the rate reported for the general
population (74 per 100 000 population) ([10]). Various reasons for differences can be postulated. First,
the incidence and/or severity of illness requiring these procedures among persons with an intellectual
disability may be lower. Even if studies show that persons with an intellectual disability have severity and
incidence levels of disease either equivalent or higher than the general population, it remains possible that
specific, unstudied conditions requiring hip or knee replacement are less common among persons with an
intellectual disability ([16]; [13]). Secondly, surgeons may be reluctant to perform the procedures on this
population due to fear of poor 'after care' or inexperience dealing with this population. They may find it
difficult to assess the need for surgery due to communication problems ([ 2]; [14]). Finally, it is possible that
there is an underlying feeling among health care providers that this population does not require the same
level of care as the general population ([ 2]). Each of these explanations should be evaluated to better
understand the discrepancy in procedure rates.
Conclusions
This study is the first to fully describe patterns of hospitalization for persons with an intellectual disability in
Ontario. Despite the data limitations, these results suggest large discrepancies between findings for
persons with an intellectual disability and published findings in the general population. Compared to the
general population, hospitalization rates for mental diseases and ambulatory care‐sensitive conditions
were higher, while major in‐hospital surgical procedure rates were lower. The study also reports high rates
of day surgery hospitalizations for dental diseases. It may be that the reported discrepancies are because
the prevalence of specific conditions experienced by persons with an intellectual disability varies when
compared to the general population. A more disturbing explanation is that a significant number of persons
with an intellectual disability are not receiving the health care that they are entitled to in Ontario. Future
research involving prospective studies is required to confirm these findings and to explore causes for the
discrepancies in health care.

Acknowledgments and Disclaimer

We acknowledge the contribution of the Canadian Institute for Health Information which made data
available through the Graduate Student Data Access Program. The Ontario Ministry of Community, Family
and Children's Services provided information from the Comprehensive Income Maintenance System
database.

Parts of this material are based on data and information provided by the Canadian Institute for Health
Information. However, the analyses, conclusions, opinions and statements expressed herein are those of
the authors, and not necessarily those of the Canadian Institute for Health Information.

Sources of funding for the research resulting in this manuscript include:

• • 

• The Ontario Graduate Scholarship Program, 2000–2001.

• • 

• The Educational Associateship, Developmental Consulting Program, 1999–2000.

• • 

• The Healthcare Equity for Intellectually Disabled Individuals (HEIDI) Health Care Access Subgroup
through a grant received from the Canadian Institutes of Health Research to J.A. Holden, S. Lewis, N.
Garcin, H. Ouellette‐Kuntz, P. Minnes, Y. Lunsky, B. McCreary, C. Forster‐Gibson, D. Hunter, E. Rajcan‐
Separovic, E. Bradley, B. Hennen, 2003.

Correspondence
All correspondence should be directed to Hélène Ouellette‐Kuntz, Department of Community Health &
Epidemiology, Queen's University, 191 Portsmouth Avenue, Kingston, Ontario, Canada, K7L 3N6 (e‐mail:
oullette@post.queensu.ca).

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~~~~~~~~
By Robert S. Balogh; Duncan Hunter and Hélène Ouellette‐Kuntz

Reported by Author; Author; Author

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Registro: 27
How active are patients in setting goals during rehabilitation after
stroke? A qualitative study of clinician perceptions. By: Parsons,
John G. M.; Plant, Sarah E.; Slark, Julia; Tyson, Sarah F. Disability
& Rehabilitation. Feb2018, Vol. 40 Issue 3, p309-316. 8p. Abstract:
Purpose:We investigated stroke rehabilitation clinician’s perceptions
of the patient as an active partner in setting goals within stroke
rehabilitation and factors that influence patient engagement.
Methods:Semi-structured interviews, subject to general inductive
analysis with 20 Clinicians’ working in three UK based stroke
rehabilitation teams (one in-patient ward and two community based
rehabilitation teams). Results:There were three key themes that
impacted on the patients active involvement in setting goals for
rehabilitation after stroke: Patient barriers to goal setting (knowledge
of the patient and family, who is the patient and the stroke’s impact);
How we work as a team (the role of the patient in setting goals, the
effect of clinician attributes on goal setting); and How systems
impact goal setting (goal-setting practice, home versus hospital, and
professional/funder expectations of clinicians’). Conclusions:Goal
setting served a range of different, sometimes conflicting, functions
within rehabilitation. Clinicians’ identified the integral nature of goals
to engage and motivate patients and to provide direction and
purpose for rehabilitation. Further, there was an identified need to
consider the impact of prioritizing clinician-derived goals at the
expense of patient-identified goals. Lastly the reliance on the
SMART goal format requires further consideration, both in terms of
the proposed benefits and whether they disempower the patient
during rehabilitation.Implications for rehabilitationGoal setting is
often promoted as a relatively simple, straightforward way to
structure interactions with patientsPatient-related factors together
with resourcing constraints are significant barriers to patient-
centered goal setting, particularly during inpatient
rehabilitationClinicians need to have pragmatic tools that can be
integrated into practice to ensure that goal-setting practice can be
maximized for patients with different intrinsic characteristics
[ABSTRACT FROM PUBLISHER] DOI:
10.1080/09638288.2016.1253115. (AN: 126206429)
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live&scope=site
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=pbh&AN=126206429&lang=es&site=eds-
live&scope=site">How active are patients in setting goals during
rehabilitation after stroke? A qualitative study of clinician
perceptions.</A>
Base de datos: Psychology and Behavioral Sciences Collection
Registro: 28
How do carers of disabled children cope? The Ugandan
perspective. By: Hartley, S.; Ojwang, P.; Baguwemu, A.; Ddamulira,
M.; Chavuta, A. Child: Care, Health & Development. Mar2005, Vol.
31 Issue 2, p167-180. 14p. 1 Diagram, 6 Charts. Abstract:
Community-based rehabilitation (CBR) was recommended by the
World Health Organization in 1989 as the strategy for improving the
quality of life of disabled people and their families, which should be
built on local knowledge and practices. In Uganda, there is no
documentation on how services relate to local knowledge. There is
a need for increased knowledge and understanding of how family
members cope with their disabled children to provide the basis for
future service development.A qualitative phenomenological design
was used to develop an in-depth understanding of how Ugandan
families cope with their disabled children in their own communities.
Data were collected from 52 families with children with disabilities
from five impairment groups, through interviews and observations in
three districts of Uganda, one urban, two rural.There are many
children with disabilities who are included, loved and cared for by
their families. A lot of time and money is spent on seeking a cure.
The extended family systems are breaking down and the main
burden of caring for a disabled family member generally falls on
one, sometimes two, female carers. Male members act as
gatekeepers, controlling the key decisions concerning the child and
the associated resources.CBR should move the focus of their
services away from the disabled individual towards the whole family.
It is important to provide accurate information about causes and
prevention of impairments, the realities of a cure, support and
respite for the female carers, and opportunities for the involvement
of fathers. This methodology is a practical mechanism for collecting
data that have the potential to positively influence and guide the
development of CBR practice in the locality. At a conceptual level
the data support the philosophy of inclusion, social integration, the
importance of trust and respect, and utilizing a holistic approach.
These are eminently transferable to other settings. [ABSTRACT
FROM AUTHOR] DOI: 10.1111/j.1365-2214.2004.00464.x. (AN:
16072741)
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url=http://search.ebscohost.com/login.aspx?
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live&scope=site">How do carers of disabled children cope? The
Ugandan perspective.</A>
Base de datos: Psychology and Behavioral Sciences Collection
 How do carers of disabled children cope? The Ugandan perspective.

Background Community‐based rehabilitation (CBR) was recommended by the World Health Organization
in 1989 as the strategy for improving the quality of life of disabled people and their families, which should
be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to
local knowledge. There is a need for increased knowledge and understanding of how family members cope
with their disabled children to provide the basis for future service development. Methods A qualitative
phenomenological design was used to develop an in‐depth understanding of how Ugandan families cope
with their disabled children in their own communities. Data were collected from 52 families with children
with disabilities from five impairment groups, through interviews and observations in three districts of
Uganda, one urban, two rural. Results There are many children with disabilities who are included, loved
and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family
systems are breaking down and the main burden of caring for a disabled family member generally falls on
one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions
concerning the child and the associated resources. Conclusions CBR should move the focus of their
services away from the disabled individual towards the whole family. It is important to provide accurate
information about causes and prevention of impairments, the realities of a cure, support and respite for the
female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism
for collecting data that have the potential to positively influence and guide the development of CBR
practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration,
the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to
other settings.

Keywords: Africa; disability; child; qualitative methods; CBR; coping strategies

Uganda is a country with an estimated 22 million people, 88% live in rural areas ([29]) and 5.8% (over 1
million) are estimated to have some form of disability ([18]) As a signatory to the United Nations Standard
Rules for the Equalization of Opportunities for People with Disabilities ([31]) and the World Programme of
Action Concerning Disabled Persons ([30]), the Government of Uganda has made efforts to improve the
inclusion of disabled people in mainstream society (mainstreaming) and establish national community‐
based rehabilitation (CBR) programmes, throughout the country. Mainstreaming disability is reflected in a
number of policies and strategies in Uganda, which include the introduction of inclusive education
practices within the Universal Primary Education programmes, the appointment of a Minister of State for
disability, five disabled members of parliament, and 47 000 disabled councillors at district and sub‐county
levels.

CBR has been internationally promoted by the World Health Organization (WHO) for the past two decades
([28]). Originally based on existing traditional practices of community care and extended family structures,
it focused on promoting low‐tech rehabilitation strategies in an attempt to simplify the complexities of
sophisticated rehabilitation techniques. In Uganda CBR has developed within the framework of the
decentralization process, which aims to place community services under locally elected centres. It was
originally delivered by personnel trained in basic skills and knowledge promoted by WHO ([12]). These
related primarily to a medically based rehabilitative intervention, which focused on facilitating change in the
disabled person, 'restoring' him/her to as near 'normal' as possible. Because of the influence of disabled
people and international guidelines, such as the joint position paper by International Labour Organization
(ILO), United Nations Educational, Scientific, and Cultural Organization (UNESCO) and WHO ([13]), this
type of intervention has increasingly been accompanied by social and rights orientated rehabilitation.
Activities such as awareness raising and income generation have taken a leading position. These
approaches follow historical and ideological patterns and so far are not based on evidence that certain
practices are more efficacious than others.

Through the Ministry of Labour and Social Development, funded by the Norwegian Association of
Disabled, at the time of this research CBR services were offered in 10 of the 56 geographical districts in
Uganda ([18]). A further 11 CBR programmes were run by non‐government organizations in eight
additional districts, making a total of 18 of the 56 districts with CBR programmes ([20]). This gave a district
coverage of 32%, although a 'CBR presence' in the districts does give information about the level of
service available to individuals, as can be seen from the results of this study. Since that time, according to
the Uganda Society for Disabled Children (USDC) in 2003, district coverage has increased although the
actual total remains undocumented. Up‐scaling these programmes has been slower than anticipated and
presents many challenges. [35]) and [18]) indicate that in the year 2000 these programmes offered
services to 85 712 people. This gave a coverage level of around 8.5% of the estimated number of
disabled people for the whole country. Previous to the development of CBR programmes in Uganda, in the
1980s, it was estimated that 2% of the disabled population could access any special support. This was
mainly through an institutional approach ([32]).

It is recommended by many authors, ([11]; [ 7]; [ 1]; [28]) that good CBR practice should build on existing
traditional structures in participation with the family. In order to do this, it is obviously necessary for the
CBR workers to know about and understand current family practices in relation to disabled family
members. They need to know:

• • 

• How do such families cope when there are no services?

• • 

• What problems do they face?

• • 

• What strategies have they used to overcome these problems?

• • 

• Have they been successful?

• • 

• If they have a CBR programme nearby how do they think this programme can assist them?

Whilst local community workers may build up a picture  of  this  information  at  community  level, this is rarely
documented. Consequently published material, which is used for training, is largely based on simplified
rehabilitation practice in income‐rich countries. This is likely to be at odds with reality. The lack of this
baseline information about how families cope with a disabled child member, is often a barrier to effective
CBR development which is then based on strategies from other cultures and settings.
Using the on‐line databases and a hand search of books and journals, a literature review was carried out
in both UK and Uganda. The key words used were, coping strategies, disability and Africa/developing
countries/income poor countries. This search revealed no literature directly relating to the African context,
but many references from Europe and America ([ 6]; [26]). The literature concerning frameworks and
structures of coping at a conceptual level, however, appeared to be relevant to other cultural settings and
are therefore briefly reviewed below.

[24]) suggest that  the way families respond to and cope with disability depends on four issues, internal and
external resources, support, their own goals for their children and the local culture. Internal resources
include personality characteristics, energy and self‐determination. External resources include support from
the extended family and community and government programmes ([15]; [23]). Inhibitors to coping are
reported to include financial hardship, stigma, demands on time, difficulties in care‐giving tasks such as
feeding, reduced time for sleep, social isolation, less time for recreational pursuits and difficulties in
managing behaviour problems ([ 4]; [19]).

The stress‐coping model originally developed by [14]) and extended by [27]), and [15]), states that a
person's appraisal of events affects his/her ability to cope. Their model is illustrated in Fig. 1. Appraisal of
events may be influenced by characteristics of the disease, disability or treatment; demographic
characteristics ([ 8]; [15]); and demands or threats to individual goals and values, as outlined in
expectancy–value theory ([ 5]). Coping behaviour develops as a result of demand/goal appraisals.
Psychological, social, and physical consequences ensue from the coping behaviour adopted. Stress or
negative feelings may be increased in parents of sick or disabled children, sometimes resulting in
depression ([ 9]). Social support may reduce the negative effects of a stressor, although the family or
community may also create conditions that add to the stress of the parent. Finally, sick or weak parents are
usually less able to cope with a stressful situation. The use of less effective coping strategies or prolonged
stress may reduce the power of coping strategies to promote adjustment ([10]).

Graph: 1 Coping strategy model ([14]).

Given that, CBR services are steadily developing in Uganda, good practice and the sustainability of such
services is more likely to be achieved if it builds on current family‐coping strategies. There is a need to
collect data that will help to fill this information gap and provide an evidence‐based footing for the future
development of CBR practice. This study aims to take a first step in providing some of this information.

Methods
The study used a qualitative research process because it provided the means whereby data on multiple
realities could be examined and because the purpose of the research was to develop an in‐depth
understanding of the perspectives of people in a given situation ([21]). It employed a phenomenological
design to describe existing practices, experiences, and needs concerning children with disabilities and
their families. It did this in order to explore the phenomenon of how Ugandan families cope with their
disabled children. The study addressed four research questions:

•1

• What are the traditional beliefs and practices relating to children with disabilities in three districts of
Uganda?

•2

• What are the traditional coping strategies of these families?

•3

• How do these practices relate to current CBR practice?

•4

• Could these practices be used as a basis for modifying current service delivery thinking? If so, how?

Study population
Data were collected from a purposive convenience sample of 51 parents/caregivers/families of children
with disabilities, from three districts of Uganda: Mpigi, Iganga and Tororo. The districts were selected on
pragmatic and convenience criteria as they were the home areas of the three researchers responsible for
data collection. This meant that they were familiar with the local customs, traditions and languages.
Consequently they were accepted into the homesteads and in a much more advantageous position to
collect rich data than researchers from outside the districts. Two of the three districts were rural which
reflected the Ugandan reality, Mpigi is close to the city of Kampala, Iganga and Tororo are rural locations in
the east of the country.

As CBR in Uganda is a strategy that caters for all impairment groups, the study aimed to collect data
reflecting a balanced representation of five impairment categories (visual, hearing, physical, mental and
multiple) identified from community work in the area. A purposive sample of three participants per
impairment, per researcher (total 15), was the aim. In the event, there were 8 carers of children with
hearing impairments, 7 for visual impairments, 12 for physical impairments, 10 for mental impairments (this
included children with epilepsy) and 14 for multiple impairments, totalling 51 carers. The families were
known to the researchers through the local CBR programmes and apart from the impairment criteria, were
chosen as a convenience sample taking into account distance, time available, and consent. Verbal
informed consent was obtained from each participant using a pre‐designed information and consent sheet.

Data collection
Two methods of data collection were utilized – key informant semi‐structured interviews as described by [
2]) and non‐participatory observation schedules outlined by [16]). Semi‐structured interviews were
conducted with the carers of the children concerned. This comprised 24 mothers, 2 fathers, 5 mothers and
fathers together, 3 siblings and 4 guardians. The interviews were conducted in the local language of each
area, using previously developed and piloted open‐ended questions. The interviews were tape recorded,
translated into English and transcribed. The interviewers used tape recorders so they could focus their
attention on the interviewees and engage them in appropriate eye contact and non‐verbal communication
and also have a verbatim record of the entire interview session.

It was originally intended to carry out the observation on 40% of the families that had been interviewed, but
because of practical constraints only 13 families had both the interview and the observation (27%) and a
further four families had observation alone. Purposive convenience sampling was used to identify this
sample with attention to a range of ages and impairment groups. See Table 1 for additional details.

1 Demographic data

InterviewInterview and Observation MaleFemaleAge 10 years and Age above 10  Total
observation only under years
Mpigi 13 6 –  8  5  7  6 13
Iganga14 – 4  9  5  8 10 18
Tororo 20 7 –  7 13  7 13 20
Total 47 13 4 24 23 22 29 51
The methods of data collection used allowed parents who could neither read nor write to participate fully in
the study [Uganda's adult literacy rate is 50% for females and 70% for males ([34])].

Development of research tools

A checklist of questions and guidelines for their administration was developed by the research team
through discussion and consensus. The process utilized their field experience, the literature and the
research objectives. Initially these were piloted with individuals within the CBR department of the Uganda
Institute of Special Education (UNISE) campus, where the researchers directly involved in data collection
were based. The guidelines assisted in pacing the interview and making it more systematic and
comprehensive, although there was flexibility to discuss other topics not anticipated by the researchers.

A structured observation schedule was designed to document interaction between parents/caregivers and
children with disabilities and was based on [17]) observations schedule. This has four sections, namely, the
setting, the participants, the activities/interactions and subtle factors. The setting asks questions such as
what the physical environment is like, what the context is. The participants describe who is in the setting,
what are their roles and what brings them together. The activities describe what is going on, how people
interact with each other and how long each activity takes. The subtle factors provide the opportunity to
record any symbolic meaning attached to what has been observed and what does not happen but should.

Before commencing this study the Ugandan researchers involved in data collection attended a 2‐week
course on how to collect qualitative data. The course was conducted in Uganda by staff from University
College, London. The course covered the nature and use of qualitative methods, how to construct and pilot
checklists for interviews and observations, practice in carrying out interviews and structured observations
and analysis and interpretation of the data.

Data analysis
The framework approach ([25]) was used to analyse the data. Both a manual and a computer‐assisted
analysis were undertaken. The researchers responsible for the data collection carried out the manual
analysis. The computer‐assisted analysis was undertaken by an independent researcher who had not
been involved in data collection. Both processes utilized the framework approach. Triangulation between
the two data collection methods, the different population groups and the two separate analyses were used
to establish commonalities and differences and so establish validation.

The computer‐assisted analysis used N‐Vivo, a qualitative software package to organize the data
according  to  Ritchie  and  Spencer's  five  key stages: familiarization, identifying a thematic framework,
indexing, charting and mapping, and interpretation.

First, the data of both interviews and observations were read in order to have an overview of the body of
the material gathered and were in six floppy disks in rich text format. The semi‐structured interview and
observation documents files were imported into N‐Vivo for storage. Following [25]) framework, documents
were read and finally the themes were generated. Tree nodes for coding were created, each bearing a
name of a theme. The nodes were like containers where knowledge gained from the data was being stored
during the coding process. As N‐Vivo is flexible, themes were sometimes added, combined or removed.
For instance, themes like, 'seeking medical assistance' and 'seeking traditional healers' became sub‐
themes under 'seeking a cure' and also the strategies 'organization and community support' were
condensed to 'Support'. Finally, all the themes generated from the data were compared to the framework
by [ 3]). See Table 2.

2 The conceptual framework of coping strategies (Burr & Klein 1994)

Highly abstract strategies Moderately abstract strategies

Highly abstract strategies Moderately abstract strategies
Cognitive Be accepting of the situation and others
Gain useful knowledge
Change how the situation is viewed or defined
Emotional Express feelings and affection
Avoid or resolve negative feelings and disabling expressions
Be sensitive to others' emotional needs
Relationships Increase cohesion (togetherness)
Increase adaptability
Develop increased trust
Increase cooperation
Increase tolerance of each other
Communication Be open and honest
Listen to each other
Be sensitive to non‐verbal communication
Community Seek help and support from others
Fulfil expectations in organizations
Spiritual Be more involved in religious activities
Increase faith or seek help from God
Individual development Develop autonomy, independence and self‐sufficiency
Keep active in hobbies
Triangulation of data from interviews and observations was carried out to establish validation and reliability.
The results from the observations and interviews were compared and later checked where data
converged. In case of reliability, this study followed all the procedures required in qualitative research
based on [22]). The technical equipment, such as tape recorders, were regularly checked and found to be
reliable. The interview transcripts and observation notes were shared and cross‐checked by co‐
researchers.

Results
Semi‐structured interviews were conducted with 51 parents/caregivers. The data represented over 50 h
of interviews and 65 h of observations. All interviews were conducted in the participants' homes. In most
cases (41), the mother or grandmother/caregiver was interviewed. Fathers and siblings took part in nine
discussions. The results were examined under four main headings and are displayed in Tables 3–6.

3 Challenges faced by families

Theme Sub‐theme Supporting data

Burden of care Gatekeepers in control 'My husband did not want me to take
the child to Mulago, he thought the
tablets we had given her at home
would suffice.' (M)
'My husband caters for anything that
requires money like taking him to
hospital and buying clothes for him.' (I)
'He [the father] said if it is drugs, it can
be continued but if it means consulting
the witch doctor, he does not want.' (T)
Bodily needs 'She feeds her, bathes her, and
every other thing you can think of. It
is only mummy who does all this.
We wonder what would happen if
mummy passed away.' (M)
Theme Sub‐theme Supporting data
'I shoulder the responsibility [of caring]
alone.' (M)
From grandmother:'I have two other
grandchildren. They too help turning her
over, cleaning her and feeding her.'(I)
Keep company/watch '[Her siblings] used to push her on
the wheelchair throughout the
village even to church.' (M)
'Sometimes I take turns with my
husband to keep watch. It is so difficult.'
(M)
'If I leave her with her friends I go to look
for firewood.' (T)
Poverty Lack of food and clothing 'Even other essentials like food,
clothing and bedding. We do not have
enough of these.' (M)
'She can move by crawling but that in
itself means that you have to have
money to keep on buying soap and new
clothes to maintain her hygiene, and yet,
as you can see, I am only a poor widow.'
(I)
'Looking after children is easy when
there is something to eat, that makes
easy, but because of this hunger, it is
difficult.' (T)
Lack of money for treatment/care 'I used to go to hospital but now
transport is difficult. It is so costly.'
(M)
'He [the father] started avoiding me until
he abandoned me altogether. Now I
have to toil in order to pay his [the
child's] school fees and those of his
other brother.' (I)
'I took her to Mbale, where they
assessed her. She was given an
appliance but I do not have money for
transport to fetch it.' (T)
Impact of child's disability Carer stress 'Mummy has developed chest pains
and backaches as a result of lifting
her.' (M)
'I find it hard to leave her alone at home
because of the frequent convulsions.'
(M)
'This child should bathe herself or do
something on her own. I help
her . . . but I also have the small
ones . . . it is the trouble I get.' (T)
Communication problems Communication breakdown 'Communication is a problem.
However, we have tried to devise signs
to use when communicating to him. It
Theme Sub‐theme Supporting data
is rather tedious and 
sometimes we
fail to convey the message as well.' (I)
1 M, Mpigi; I, Iganga; T, Tororo.

4 Challenges faced by children with disabilities

Theme Sub‐theme Supporting data

Attitudes of others Rejection 'They [children with disabilities]
are seen as objects of shame
therefore should not be seen.'
(M)
'She was of school‐going age but no
school could admit her.' (M)
'My husband rejected the child after he
became blind claiming that [he] could not
be his son since in their family they do not
have a history of their members, living or
dead, being born blind.' (I)
Loneliness and isolation 'No, he cannot eat with others because
he has the bad disease of falling
(epilepsy). We fear that he could pass
the disease to his brothers and sisters.'
(I)
'She cries when her peers go. She also
wants to go.' (T)
Abuse by peers 'When he goes to school with those who
are not disabled, they take away his
things. When he quarrels with those
people, they push him and they want to
make him disabled for a second time.'
(T)
'His friends beat him or abuse him
because of his disability.' (T)
Impact of disability Restricted mobility and limitations in 'She is just fed and assisted to
self‐care do all other things. She cannot
do anything except to crawl and
make noise.' (M)
'Generally he cannot do most of the
activities that need thinking.'(I)
'Those days I would carry her and go with
her but now I cannot . . . she is as
heavy as a stone . . . Now I just
leave her on the veranda. I find her there
when the others go to school.' (T)
Access to education Attitudes of carers 'I think they [children with
disabilities] should get education
like anyone else.' (M)
'If there was a school nearby and he can
be taken there, I would take him.' (T)
Lack of access to education 'He was rejected in the neighbouring
school because of the disability.' (I)
Theme Sub‐theme Supporting data
'Everyone I see talks about taking him to
school but what I reply is I don't have
money.' (T)
Communication problems Communication breakdown 'Sometimes she gets so
withdrawn. When other children
play she cannot join in . . . 
She hears but it is very difficult to
live with someone who cannot
talk.' (M)
'When he fails to communicate to us, he
becomes very frustrated and cries.' (I)
'He cannot speak so he cannot
communicate to his peers or adults what
he feels or wants.'(I)

• 2 M, Mpigi; I, Iganga; T, Tororo.

• 5 Identified needs

Theme Sub‐theme Supporting data

Knowledge and skills for carers Seeking information 'I needed to get knowledge about
caring for the disabled in order to
assist my child.' (M)
'Coping with the problems emanating from
the boy's disability remains difficult for us
to manage . . . probably you will give
us some advice on what to do.' (I)
'I did not do anything. I was waiting for
instruction from the senior people.' (T)
Impact of disability Physical needs 'The condition does not allow her to
stay without food for long.' (T)
'The serious problem is the way the
condition makes her fall . . . you can
see all these scars are as a result of too
much falling. Her mouth is torn as she falls
on anything.' (T)
Need for assistive devices 'I think it would be better if she had
a wheelchair to move in.' (I)
'She needs a wheelchair that can be
pushed. If that one was there, I could push
her in the wheelchair.' (T)
Need for company '. . . Others are different. They
will not come near him. They will
not allow their children to play with
him. I think they are afraid of
contracting his disease [epilepsy].'
(M)
'Playing football with his peers makes him
happy.' (I)
'She is quite happy to be with people.
Where there are people is where she
wants to stay.' (T)
Theme Sub‐theme Supporting data
Access to education Need for education '. . . Even for education, the
disabled are not given priority.
Parents wonder what the disabled
person will achieve. Priority is given
to the normal ones . . .' (M)
'What will happen to [my child] when he
grows up? We do not think we shall ever
be able to educate him.' (I)
'. . .  I need to take her to an
appropriate school where she can get
special teachers but I cannot afford it
because I have no money . . .' (I)

• 3 M, Mpigi; I, Iganga; T, Tororo.

• 6 Coping strategies

Theme Sub‐theme Supporting data

Seeking a cure Family solution 'He refused to suck so
we resorted to feeding
him by bottle.'(M)
'However we have tried to devise signs to use when
communicating.' (I)
'Western' medicine 'This sickness has been costly.
Moving from one hospital to
another has been expensive.
The drugs are highly priced.' (M)
'. . . [my child] goes where the doctor is and says
"inject me" (T)
'I try to find a way of getting him healed from qualified
medical staff . . . I cannot go to a traditional
healer.'(T)
Traditional medicine 'I was directed to the native
doctors, these too did what they
could but in vain. We moved to
many doctors.'(M)
'We took him to local healers who gave us herbal
medicine'(I)
'He gave him herbs for drinking and for massage – it
worked and later he started to walk.' (I)
Experiences of seeking a cure 'We took him to hospital but it did
not heal. We also tried the native
healers but  all in vain.' (M)
'We have tried all that we can to find a way of curing the
child but we have failed.' (I)
'I lost money for nothing.' (I)
'I have tried very hard. It looks as though I am defeated.
Even the people of the village sympathise with me the
way I have moved around with this child.' (T)
Support Social support 'We have a neighbour
who has helped us a
lot.' (M)
Theme Sub‐theme Supporting data
'When he was still a child several people assisted me to
look after him.' (I)
Physical/material support 'Yes, we got it [a wheelchair]
from the Kisumba Foundation.'
(M)
'My parents, they give me money for transport and for
meeting all charges by medicine men' (I)
'His uncle often buys him books. When he is sick, he
takes him to the hospital.' (T)
Beliefs God's will 'Well it is what God has
chosen for us. I am hurt
but what can I do.' (M)
'We knew the child had become deaf and that was God's
will. We never bothered to seek for an explanation of the
cause of the problem from spiritualists, like other people
would do in similar circumstances.' (I)
Witchcraft or spirits 'If a person does not satisfy his
ancestral spirits, he may incur
their displeasure and hence
cause his children to be
disabled.' (M)
'I had to sacrifice a hen to appease the spirits. Now he
walks . . .' (I)
'Most attribute disability to witchcraft.' (T)
Concurrent knowledge of medical causes 'Her disability was caused by a
malaria fever that attacked her
when she was three years old.'
(I)
'Most disabilities are a result of illness. Some diseases
may be difficult to treat, some . . . leave one with
crippled parts of the body.' (T)
Attitudes Acceptance 'We are not ashamed of
her because she is our
sister . . .' (M)
'I never discriminate between my children; I like all of
them.' (I)
'I find her quite similar to the able‐bodied. She is the one
who is dear to me.' (T)
Inclusion 'He plays a lot with other
children.' (M)
'I look for food and prepare it for [the child] to cook. She
sits by the fireplace . . .  she can put fuel in the
fireplace easily.' (I)
'She goes to the well with others, she also grinds, she
does work in the house, she digs, she peels
potatoes . . .' (T)
Over‐compensation/protection 'What about going to school? I
stopped her, I don't allow her to
go.' (T)
Theme Sub‐theme Supporting data
'I give him food alone . . . I do not awaken him like I
do for the others. If I awaken  him at six like I do for the
others he may fall sick . . .' (T)
4 M, Mpigi; I, Iganga; T, Tororo.

Challenges faced by families

The data suggested that although the majority of families are coping, most families face problems that fall
under four themes: the burden of care, poverty, the impact of the child's disability and communication
problems.

The data indicate that the burden of everyday care‐giving and attending to the child's bodily needs falls
primarily on the mother of the family. In the absence of the mother (often because of death or remarriage),
the grandmother usually cares for the child. Fathers were not usually reported to be involved in daily care‐
giving, although some mothers reported shared responsibility for care with their husbands. Fathers often
had the particular role of 'gatekeeper', controlling access to funds and making decisions about the child's
treatment. Siblings, aunts and friends were also reported to have a role in care‐giving, most often in the
role of companion or providing short periods of respite for the mother to carry out other household and
family tasks.

Poverty affects coping behaviour because it reduces the external resources available for facilitating such
behaviour. Two sub‐themes emerged from this theme: lack of funds for basic necessities such as food and
clothing and lack of funds for hospital charges, transport, schooling and assistive devices such as hearing
aids and wheelchairs.

One of the main consequences of the child's disability for carers was stress, in the form of physical
ailments, insufficient time for other chores and responsibilities or isolation from community activities  
because  of  time  spent  attending  to  the  child at home. This may be related to lack of external resources,
as described in the onus of care theme, perhaps resulting in less effective coping strategies and physical,
social and psychological consequences ([15]). Many mothers reported having insufficient time to rest,
although in some cases, the burden was eased by relatives helping with care‐giving or domestic chores.

The data suggest that carers of children with hearing or speech impairments grapple with the challenge of
communicating with their children, often using signs as a medium of communication. In many cases,
however, this is inadequate resulting in communication breakdown.

The observational data supported all the sub‐themes with the exception of the role played by fathers.
There were no observations made of fathers acting as gatekeepers, as in many homes fathers were
absent most of the time that the observation was taking place. The onus of care was seen to fall on the
women of the community who performed all the tasks relating to the disabled children. Poverty was seen in
the standard of housing, clothing, and in the low standard of food consumption. Stress was evident by the
levels of fatigue and lethargy amongst the carers. There were examples of frustration when children cried
but could not communicate their needs, parents were also distressed because they could not understand
their problems.

Challenges by children with disabilities, as seen by their carers

Although many of the difficulties faced by children with disabilities are subsumed in the themes described
above, different sub‐themes emerged for two of the themes (impact of disability and communication
problems) and two completely separate themes emerged.
One of the main problems encountered by children with disabilities, as seen by their carers, is negative
attitudes. These were reported to manifest primarily as rejection of the child by family members, peers or
teachers. Several informants mentioned that some members of the community still believe that children
with disabilities are shameful or embarrassing to the family and should be hidden from other people. For
children who encounter such attitudes, the result is often isolation and loneliness. In some cases, children
were abused by peers.

The practical or physical impact of disability on the child often manifests as restrictions in mobility or self‐
care, according to carers. Several parents commented that as the child got older, their mobility was further
restricted because they could no longer be carried to places. Carers of children with severe disabilities
reported that everyday self‐care skills such as eating, washing and toileting were performed for the child.

The data suggest that parents and carers of children with disabilities would like their children to attend
school and have equal access to education. In many cases, lack of access meant that the child was
unable to attend school, despite the carers' positive attitudes. Lack of access was reported to be due to
impairment‐related factors together with other factors such as lack of money, the attitude of the school, and
distance from home to school.

Carers felt that communication problems limited the child's ability to express his/her needs and feelings.
Several carers reported that their child would often express frustration or become withdrawn because of
inability to communicate with family and peers.

The observational data supported all the sub‐themes with the exception of abuse by peers. This was not
observed, most probably because of the presence of the researcher. Many children were staying with their
grandparents or other elderly relatives having been rejected by their parents and removed from their
siblings. They did not attend school. Many of the children did not join in with other children and were
sometimes kept in their rooms all day, away from any community activities. Some children with
communication problems were observed screaming in sheer frustration at their inability to communicate.

Identified needs
The need for parents/carers to have adequate knowledge and skills emerged from the data. Several
informants expressed the view that more information would assist them in caring for their children and
reducing their own stress levels, essentially acting as a resource to reduce the negative effects of a
stressor, as described by [ 9]). As the aim of CBR is community and family empowerment, parents
equipped with knowledge about their child's disability and skills in addressing their and their child's needs
will help to facilitate the goals of CBR programmes.

Three sub‐themes emerged from the theme of 'impact of the disability', in addition to those mentioned in
the previous sections. Comments from carers suggested that their children's three main needs were
physical, need for assistive devices such as hearing aids or wheelchairs, and the need for company. These
relate to some of the sub‐themes mentioned in the previous section such as loneliness and isolation,
restricted mobility, and limitations in self‐care.

Access to education was an additional need identified by carers, again relating to the problem of lack of
access cited above. Comments in this sub‐theme were related to concerns about the child's future and
what would happen to him/her when he/she grows up.

The observational data supported all the sub‐themes, with children seen asking advice from parents about
how they can help. Some children had injuries that could be attributed to neglect and ignorance. There
were poor hygienic conditions in many homes with, for example, little understanding of the relationship
between malaria and stagnant water or open fires and injury.
Strategies for coping
A large amount of the data set addresses the parents' and carers' constant search for a cure for their
child's illness/impairment. This was from both formal medical practitioners and traditional healers. Four
sub‐themes emerged from this theme, representing the most commonly encountered theme in the data.
The three common means of seeking a cure were family solutions, formal (or 'Western') medicine, and
traditional medicine. In the process of seeking formal or traditional medicine, many encountered problems
such as lack of money for hospital bills and transport. Many parents developed the behaviour of moving
from one hospital or healer to another, not knowing what to do because previous medicine or herbs had
not cured the disability. Conflict between the parents over whether to consult traditional or western
medicine was reported to sometimes occur.

The theme of support was found to be common to all of the families involved in the study and a key factor
in carers' coping strategies. According to [15]'s (1996) model, external resources are important factors in
developing coping behaviour. Two sub‐themes emerged from the support theme: social support and
physical or material support from family and disability organizations.

Three sub‐themes under 'beliefs' emerged from the data, which showed that parents and caregivers often
believed that God's will, angered spirits, or witchcraft were the cause of their child's disability. There was
also a subset of informants who identified a medical or developmental reason for disability. Although some
parents displayed a fatalistic view of their child's disability, there was a rising awareness among others that
there are things that parents/carers can do to help if information is available and appropriate.

Despite some negative attitudes, such as rejection, cited in previous sections, most data support
acceptance and inclusion. Many families accept their children and involve them in domestic chores and
family activities: this should be built upon in services.

Observational data showed that families had their own solutions to the challenges posed by disabled
family members. These included the use of home gestures and making assistive devices such as parallel
bars and special seats. Social support from neighbours was also observed. Some disabled children wore a
talisman indicating the families' beliefs in the role of spiritual powers in the cause and management of
disabilities. At the same time children were observed being taken to clinics for medical attention.

Discussion
Despite the fact that CBR programmes operate in all three of the districts visited in this study, there was
little mention of their activities in the data by any of the participants. Possible explanations for this could be
that the districts are large and the CBR workers few, or that the services they provide are not relevant to
people's needs and so they were not mentioned. The three central discussion points that emerged from
the analysis will be considered in this section, together with the implications of these findings for CBR
programmes in Uganda.

One of the main conclusions to be drawn from the data is that, the Ugandan parents and carers who  
participated  in  this  study  are  coping  with their  children's  disabilities  without  interaction with CBR
programmes. Many parents and carers expressed acceptance of their child and made positive attempts to
include him/her in everyday family activities, in some cases altering their own behaviour to facilitate their
inclusion. For example, in Table 6, a carer explains that their family had devised their own system of
signs to communicate with the child. Other coping strategies were less successful in terms of their impact
on the child or carer. Some carers expressed feelings of overprotection or rejection towards the child,
which resulted in negative outcomes for both parties, for example, financial difficulties or inability to attend
school. Others expressed feelings of guilt or fatalism about their child's disability, which led to feelings of
helplessness or resentment of the child's disability.
These results suggest that CBR programmes should not be based on the assumption that children with
disabilities will be rejected by their families or communities. Programmes that start with this assumption
risk missing the valuable strategies that many parents and carers have already developed and missing one
of the central assumptions of the approach, which is to build upon local practices.

Despite the positive reports given by many parents, a lot of time and money are spent by many families in
seeking a cure for their child's disability. Most parents reported that they consulted both formal medical
practitioners and traditional healers, with little success in most cases. It seemed that seeking a cure took
disproportionate amounts of family time and income considered against its level of success and help for
the family.

Many parents claimed to have no knowledge or contact with CBR programmes. As a result of their fruitless
search for a cure, some parents had developed the helpless or fatalistic attitudes discussed above. This
was also linked to the lack of information or skills that many parents complained about (see Table 6).
Information is one of the external resources that facilitate the development of coping behaviour:
conversely, ambiguous or unclear information can give rise to parental stress and thus inhibit the coping
process. These results emphasize the importance of community workers avoiding unsubstantiated claims
and promoting the transfer of relevant and accurate information to parents and carers. There may be a
case for training traditional healers in these techniques, as they are the first to be consulted by many
parents, whereas many of the parents in this study had no contact with CBR workers.

Finally, the data indicated that the burden of daily care‐giving falls primarily on female carers, particularly
mothers and grandmothers. Fathers often had a 'gatekeeping' role, responsible for treatment decisions
and provision of money and material resources. For many mothers, this meant that they were often
confined to the home and restricted in social and community activities, resulting in stress. This suggests
that the focus of CBR services should be shifted away from individual rehabilitation to spending time
supporting families to meet needs such as company, respite, and information. CBR workers need
information on how families operate in a given area, as families differ in their culture. In addition, most CBR
workers deal with mothers or female carers. Programmes should perhaps encourage the participation of
fathers too: as the source of family and childcare decisions in many of the families, the success of
programme work may depend on the cooperation of all family members.

Conclusions
The methodology of asking the parents and carers of children with disabilities about their perceptions and
coping strategies has yielded some interesting and valuable material, which has the potential to influence
and guide CBR practice in the locality. The Ugandans in the research team have reflected on the positive
learning experience that this project has afforded. They report that they now view the development of CBR
services differently and realize the importance of a holistic approach, which includes the social dimension.
They report a change in the priority they now give subjects taught to students of CBR at UNISE.

At a conceptual level the data support the philosophy of inclusion, social integration, the importance of
trust and respect utilizing a holistic approach. These are eminently transferable to other settings. In
addition, this study provides data to support the model of coping presented by [14]) (Fig. 1) and [ 3])
(Table 2). This leads us to conclude that the concept underpinning this model is also relevant in the
Ugandan context.

It is recommended that the study is repeated in different locations with improved representation of the
study population to include children and fathers and also the use of additional methods of data collection,
such as focus group discussions. Such strategies were precluded in this study because of limited
resources of time and money, but it is felt that they would serve to provide rich data on which kind of CBR
programme is likely to build and flourish.

Acknowledgements
Grateful thanks are extended to all the families who participated in this study, to the UNISE, Kyambogo
University, for their support, to Julie Carter who made a significant contribution to the writing up stage of
the project and to the C.P. Charitable Trust (UK) who funded the programme.

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~~~~~~~~
By S. Hartley; P. Ojwang; A. Baguwemu; M. Ddamulira and A. Chavuta

Reported by Author; Author; Author; Author; Author

This document is a scanned copy of a printed document. No warranty is given about the accuracy of the
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Registro: 29
How the all fruits salad creates sweeter futures in rural and remote
mental health. By: Lloyd, Robbie. Australasian Psychiatry. Jan2009
Supplement 1, Vol. 17, pS142-S145. 1p. Abstract: Objective: This
paper outlines evidence of efficacious outcomes from mixing people
living with diverse mental health challenges and/or intellectual
disability. The intention was to show how mixing up people who are
differently challenged can be efficacious in (re)habilitation terms.
Two separate experiences of sharing personal narratives were
involved, along with creative expressions in music, art and filming,
combined with group gatherings providing discerning feedback for
each other on members’ day-to-day progress. After 12 months of
‘open urban tribe’ gatherings in Sydney, where participants formed a
community of belonging, the model was adapted for use in Alice
Springs. The original group developed a cycle of interactive ritual
rhythms, and these became a special feature of their self-help, peer
support approach. The Sydney project modelled community-based
rehabilitation, and that process then informed the processes
initiated in a rural, remote location. Methods: Regular whole tribe
gatherings ‘in the circle’ combined with mentoring ‘aunties and
uncles’. By sharing stories and giving personal feedback on their
progress, participants developed skills and confidence in self
expression. Relating to each other and the group, and sharing
creative expressions (group craft activities, dancing, small group
performing) added depth to the experience of participants...
[ABSTRACT FROM AUTHOR] DOI: 10.1080/10398560902948464.
(AN: 47811002)
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rural and remote mental health.</A>
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Registro: 31
Integrated decision-making model for community-based
rehabilitation service utilisation among persons with severe mental
illness in China: protocol for a cross-sectional, mixed-methods
studyWang, Ruoxi; Tang, Shangfeng; Shaw, Ian; Feng, Zhanchun;
Chen, Zhuo; Luo, Yuxiong; Song, Hongxun; Wu, Tailai; Fu, Qian;
Fu, Hang; Huang, Yueying; Chen, Xiaoyu; Feng, Da. BMJ OPEN;
DEC 2018; 8; 12 (AN 000455309300025)
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live&scope=site">Integrated decision-making model for community-
based rehabilitation service utilisation among persons with severe
mental illness in China: protocol for a cross-sectional, mixed-
methods study</A>
Base de datos: Social Sciences Citation Index

Registro: 32
Involvement of people with schizophrenia in decision-making in rural
Ethiopia: a qualitative studySouraya, Sally; Hanlon, Charlotte;
Asher, Laura. GLOBALIZATION AND HEALTH; AUG 22 2018; 14
(AN 000442802400002)
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live&scope=site">Involvement of people with schizophrenia in
decision-making in rural Ethiopia: a qualitative study</A>
Base de datos: Social Sciences Citation Index

Registro: 33
"Living With a Ball and Chain": The Experience of Stroke for
Individuals and Their Caregivers in Rural Appalachian
KentuckyDanzl, Megan M.; Hunter, Elizabeth G.; Campbell, Sarah;
Sylvia, Violet; Kuperstein, Janice; Maddy, Katherine; Harrison,
Anne. JOURNAL OF RURAL HEALTH; SEP 2013; 29; 4; p368-p382
(AN 000325271500005)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000325271500005&lang=es&site=eds-
live&scope=site">"Living With a Ball and Chain": The Experience of
Stroke for Individuals and Their Caregivers in Rural Appalachian
Kentucky</A>
Base de datos: Social Sciences Citation Index

Registro: 34
Meeting the needs of women in mental health rehabilitation
servicesTayor, Tatiana L.; Dorer, Genuna; Bradfield, Sarah; Killaspy,
Helen. BRITISH JOURNAL OF OCCUPATIONAL THERAPY; OCT
2010; 73; 10; p477-p480 (AN 000208543300006)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000208543300006&lang=es&site=eds-
live&scope=site">Meeting the needs of women in mental health
rehabilitation services</A>
Base de datos: Social Sciences Citation Index

Registro: 35
Registro no disponible.

Registro: 36
Registro no disponible.

Registro: 37
Mental health research: developing priorities and promoting its
utilization to inform policies and servicesRegan, M.; Gater, R.;
Rahman, A.; Patel, V.. EASTERN MEDITERRANEAN HEALTH
JOURNAL; 2015; 21; 7; p517-p521 (AN 000362973500011)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000362973500011&lang=es&site=eds-
live&scope=site">Mental health research: developing priorities and
promoting its utilization to inform policies and services</A>
Base de datos: Social Sciences Citation Index
Registro: 38
Model Fidelity of Assertive Community Treatment for Clients With
First-Episode Psychosis: A Target Group-Specific
ApplicationVerhaegh, M. J. M.; Bongers, I. M. B.; Kroon, H.;
Garretsen, H. F. L.. COMMUNITY MENTAL HEALTH JOURNAL;
FEB 2009; 45; 1; p12-p18 (AN 000262811700003)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000262811700003&lang=es&site=eds-
live&scope=site">Model Fidelity of Assertive Community Treatment
for Clients With First-Episode Psychosis: A Target Group-Specific
Application</A>
Base de datos: Social Sciences Citation Index

Registro: 39
Modeling community-based, self-help mental health rehabilitation
reform. By: Lloyd, Robbie. Australasian Psychiatry. Jan2007
Supplement 1, Vol. 15, pS99-S103. 5p. Abstract: Objectives: The
research used supported collaborative inquiry in participative action
research to record the effectiveness of peer support and narrative
therapy, in an indigenous-informed community of belonging, or open
urban tribe. There were three objectives: (i) to identify the active
attributes of consciousness among those living with intellectual
disability and/or mental illness, which can be acknowledged,
nurtured and developed to strengthen their balanced self-
awareness, and assist them in taking more responsibility for their
lives; (ii) to identify how these aspects of self awareness can be
used to inform improved individual and group empowerment and
improved rehabilitation practice, in communities of inter-subjective
relationship and belonging, and; (iii) by exploring collaborative
engagement with 'the system' which serves these two groups, to
identify how they can more effectively be empowered to manage the
planning, policies, programs and service delivery which largely
determine their quality of life. The research also seeks to clarify how
this person-valuing approach can be applied, in a self-help, peer-
supported, community-based rehabilitation system. Findings:
People living with mental illness and/or intellectual disability
experience improved quality of life and self-determining sense of
self when they are included in mixed open urban tribes, or
communities of belonging. The predominant way this comes about
is through the diverse shared metaphors of being which the
participants provide for each other, through their energy of life and
testimonies of experience which give each other encouragement
and stimulation, generating motivation and strengthened intention
 for life. It is not the cognitive or social ability to perform particular
skills in individual or group exchange that determines the impact of
this open urban tribal model; it is more the spirit and essence of the
people, and their way of exchanging loving interaction and generous
caring, listening and feedback that enhances participants' quality of
life experience. Successful psychosocial rehabilitation depends on
people's motivation for recovery, growth and development, and this
happens best in communities of belonging, not in isolated 'group
homes' or patronizing 'professional' service delivery that
pathologizes its recipients. Improvement in mental health and
supported living services will accelerate and create cheaper bottom
line costs, with the provision of equitably facilitated, self-help, peer-
supported, open urban tribe models of mutual support and
motivation for ongoing life development. [ABSTRACT FROM
AUTHOR] DOI: 10.1080/10398560701701296. (AN: 34660014)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=pbh&AN=34660014&lang=es&site=eds-
live&scope=site">Modeling community-based, self-help mental
health rehabilitation reform.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 40
Neglected Tropical Diseases, Cross-Cutting Issues Workshop, 4-6
February 2015, Utrecht, the Netherlands: meeting reportMieras,
Liesbeth F.; Anand, Sunil; van Brakel, Wim H.; Hamilton, Helen C.;
Kollmann, K. H. Martin; Mackenzie, Charles; Mason, Ingrid;
Wickenden, Anna. INTERNATIONAL HEALTH; MAR 2016; 8; pi7-
pi11 (AN 000372633900003)
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direct=true&db=edswss&AN=000372633900003&lang=es&site=eds-
live&scope=site">Neglected Tropical Diseases, Cross-Cutting
Issues Workshop, 4-6 February 2015, Utrecht, the Netherlands:
meeting report</A>
Base de datos: Social Sciences Citation Index

Registro: 41
 Older Adults' Perceptions of Recovery From Mental Illness: Impact
of Psychiatric Hospitalization Prior to 1990Tepper, Miriam; Berger,
Robert; Byrne, Steven; Smiley, Joan; Mooney, Megan; Lindner,
Erica; Hinde, Jennifer L.; Korn, Peter. PSYCHIATRIC
REHABILITATION JOURNAL; JUN 2013; 36; 2; p93-p98 (AN
000209231700006)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000209231700006&lang=es&site=eds-
live&scope=site">Older Adults' Perceptions of Recovery From
Mental Illness: Impact of Psychiatric Hospitalization Prior to
1990</A>
Base de datos: Social Sciences Citation Index

Registro: 42
Orientation and Mobility Services for Persons with Visual
Impairments: South African Orientation and Mobility Practitioners'
Eye View. By: Maguvhe, Mbulaheni O.; Dzapasi, Alphonce; Sabeya,
Paula. Journal of Visual Impairment & Blindness. Dec2012, Vol. 106
Issue 11, p750-755. 6p. 1 Chart. Abstract: The article discusses
research which was conducted to explore and describe the current
state of orientation and mobility (O&M) practice for people with
visual impairment in South Africa as perceived by O&M
practitioners, in an effort to determine the factors that could
contribute to its improvement. Researchers used a semistructured
questionnaire and interviews with 20 O&M practitioners. They found
that the majority of O&M practitioners were employed full time, that
O&M practitioners almost always worked with fewer clients than
with those who remained on their waiting lists every year, that the
practitioners had severe time constraints and that there was a
shortage of O&M practitioners. DOI:
10.1177/0145482X1210601106. (AN: 84416051)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=pbh&AN=84416051&lang=es&site=eds-
live&scope=site">Orientation and Mobility Services for Persons with
Visual Impairments: South African Orientation and Mobility
Practitioners' Eye View.</A>
Base de datos: Psychology and Behavioral Sciences Collection
Registro: 43
Outcome of community-based rehabilitation program for people with
mental illness who are considered difficult to treatBarbato, Angelo;
Agnetti, Germana; D'Avanzo, Barbara; Frova, Maria; Guerrini,
Antonino; Tettamanti, Mauro. JOURNAL OF REHABILITATION
RESEARCH AND DEVELOPMENT; 2007; 44; 6; p775-p783 (AN
000253552600002)
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live&scope=site">Outcome of community-based rehabilitation
program for people with mental illness who are considered difficult
to treat</A>
Base de datos: Social Sciences Citation Index

Registro: 44
Outcomes and impact of community-based rehabilitation
programmes in Chinese communities. By: Chung, Eva Y.; Packer,
Tanya L. Disability & Rehabilitation. Apr2017, Vol. 39 Issue 8, p817-
821. 5p. 2 Charts. Abstract: Purpose: To identify the most common
and most valued outcomes of community-based rehabilitation
(CBR) in Chinese communities and to map these to the CBR
evaluation framework. Method: A multiple, embedded case study
design was used. Four CBR programmes in China met the criteria
for inclusion and participated. Data collection, via participant "story
telling", followed the procedures of the most significant change
technique (MSC) over a period for five months. Content analysis
with thematic coding was used to detect the common significant
changes described in "top-rated" stories and in the entire pool of
stories. Meta-analysis using the CBR framework was carried out to
enrich the understanding of programme outcomes. Results: A total
of 101 stories were collected in the two rounds of story collection
from the four programmes. Aggregated results demonstrated that,
across all programmes, 78.21% of stories focused on changes in
people with disabilities, 9.9% described aspects of programme
development, 8.91% reported on outcomes related to CBR workers,
and only 2.97% were focused on advocacy. When mapped against
the elements of the CBR framework the MSCs among these four
programmes were (1) psychosocial changes, (2) increased family
participation and (3) improved physical functioning. Conclusions:
CBR practice in Chinese communities remains orientated towards
an approach of functional rehabilitation rather than community-
based inclusive development. [ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2016.1161850. (AN: 121245080)
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direct=true&db=pbh&AN=121245080&lang=es&site=eds-
live&scope=site">Outcomes and impact of community-based
rehabilitation programmes in Chinese communities.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 45
Outcomes of a community-based treatment programme for people
with acquired brain injury in the chronic phase: a pilot study. By:
Middag-van Spanje, Marij; Smeets, Sanne; van Haastregt, Jolanda;
van Heugten, Caroline. Neuropsychological Rehabilitation.
Mar2019, Vol. 29 Issue 2, p305-321. 17p. 1 Diagram, 5 Charts.
Abstract: The objective of the study was to evaluate the outcomes of
Brainz, a low intensity community-based treatment programme for
people with acquired brain injury (ABI). Participants were 62 people
with sustained ABI (5.2 years post-injury, SD = 4.5) and 35 family
caregivers. Participants attended two to five cognitive and physical
group modules and received two hours of individual home treatment
every two weeks. Primary outcomes for people with ABI were
participation, perceived difficulties in daily life and need of care,
level of goal attainment, and self-esteem. Primary family caregiver
outcome was perceived burden of care. Attrition rate of people with
ABI was 24% (n = 15), and of family caregivers was 31% (n = 11).
People with ABI were more satisfied with the level of their
participation after completing Brainz (p < .01), but showed no
change in participation frequency or in restrictions (both ps > .01).
They perceived fewer difficulties in daily life and less need of care
(both ps < .01). Also, in two cognitive modules people improved on
their goal achievement (p < .01). However, their self-esteem was
reduced (p < .01). Caregiver burden was reduced (p < .01). This
study has provided preliminary evidence of the effectiveness of a
combined group-based clinical and individual home-based
treatment programme, but more research is needed, preferably in
larger controlled studies. [ABSTRACT FROM AUTHOR] DOI:
10.1080/09602011.2017.1298527. (AN: 133674325)
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 live&scope=site">Outcomes of a community-based treatment
programme for people with acquired brain injury in the chronic
phase: a pilot study.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 46
Outcomes of a Therapeutic Fly-Fishing Program for Veterans with
Combat-Related Disabilities: A Community-Based Rehabilitation
InitiativeBennett, Jessie L.; Piatt, Jennifer A.; Van Puymbroeck,
Marieke. COMMUNITY MENTAL HEALTH JOURNAL; OCT 2017;
53; 7; p756-p765 (AN 000410760300002)
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direct=true&db=edswss&AN=000410760300002&lang=es&site=eds-
live&scope=site">Outcomes of a Therapeutic Fly-Fishing Program
for Veterans with Combat-Related Disabilities: A Community-Based
Rehabilitation Initiative</A>
Base de datos: Social Sciences Citation Index

Registro: 47
Outcomes of people with psychotic disorders in a community-based
rehabilitation programme in rural India. By: Chatterjee, Sudipto;
Pillai, Aravind; Jain, Sumeet; Cohen, Alex; Patel, Vikram. British
Journal of Psychiatry. Nov2009, Vol. 195 Issue 5, p433-439. 7p. 4
Charts, 1 Graph. Abstract: <bold>Background: </bold>There is little
evidence of the feasibility, acceptability and impact of services for
the care of people with psychotic disorders in low- and middle-
income countries.<bold>Aims: </bold>To describe the scaling up
and impact of a community-based rehabilitation programme for
people with psychotic disorders in a very-low-resource
setting.<bold>Methods: </bold>Longitudinal study of people with
psychotic disorders who had been ill for an average of 8 years in a
rural Indian community. All individuals received a community-based
intervention package comprising psychotropic medications,
psychoeducation, adherence management, psychosocial
rehabilitation and support for livelihoods. The primary outcome was
change in disability scores.<bold>Results: </bold>The cohort
consisted of 256 people with psychotic disorders (schizophrenia,
bipolar affective disorder and other psychosis) of whom 236 people
completed the end-point assessments (92%), with a median follow-
up of 46 months. There were significant reductions (P<0.05) in the
levels of disability for the cohort, the vast majority (83.5%) of whom
engaged with the programme. On multivariate analyses, lower
baseline disability scores, family engagement with the programme,
 medication adherence and being a member of a self-help group
were independent determinants of good outcomes. Lack of formal
education, a diagnosis of schizophrenia and dropping out of the
programme were independent determinants of poor
outcomes.<bold>Conclusions: </bold>Community-based
rehabilitation is a feasible and acceptable intervention with a
beneficial impact on disability for the majority of people with
psychotic disorders in low-resource settings. The impact on
disability is influenced by a combination of clinical, programme and
social determinants. [ABSTRACT FROM AUTHOR] DOI:
10.1192/bjp.bp.108.057596. (AN: 46798199)
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direct=true&db=pbh&AN=46798199&lang=es&site=eds-
live&scope=site">Outcomes of people with psychotic disorders in a
community-based rehabilitation programme in rural India.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 48
Perceptions of recovery during the early transition phase from
hospital to home following acquired brain injury: A journey of
discovery. By: Turner, Benjamin; Fleming, Jennifer; Ownsworth,
Tamara; Cornwell, Petrea. Neuropsychological Rehabilitation.
Jan2011, Vol. 21 Issue 1, p64-91. 28p. 2 Charts. Abstract: The
increasing volume of literature concerning community-based
rehabilitation for individuals with acquired brain injury (ABI) has
recently brought into focus the importance of the early hospital-to-
home transition phase. The present study aimed to explore the
perspectives of individuals with ABI and their family caregivers
concerning recovery and adjustment during the early transition
phase from hospital to home. The study utilised a qualitative
phenomenological design and included 20 participants with ABI and
18 family caregivers. Participants completed in-depth semi-
structured interviews at the following time points: pre-discharge, and
1 and 3 months post-discharge. Data analysis entailed thematic
analysis of the interview transcripts and incorporated open, axial
and selective coding techniques. The following four primary themes
emerged from the analysis process: (1) adapting to life in the real
world; (2) variations in recovery; (3) the emotional adjustment
rollercoaster; and (4) discovering the new me. Collectively, the
findings highlight that while returning home was typically perceived
to facilitate ongoing recovery, the process of adjusting emotionally to
life at home posed a significant challenge for many participants
during the transition phase. The clinical/service implications of the
 findings relate to the need for: (1) contextually appropriate
rehabilitation options during the transition phase; and (2) the
expansion of transition-based models of service delivery to include
targeted psychological intervention approaches. [ABSTRACT
FROM AUTHOR] DOI: 10.1080/09602011.2010.527747. (AN:
57225647)
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live&scope=site">Perceptions of recovery during the early transition
phase from hospital to home following acquired brain injury: A
journey of discovery.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Perceptions of recovery during the early transition phase from hospital to home
following acquired brain injury: A journey of discovery.

The increasing volume of literature concerning community-based rehabilitation for individuals with acquired
brain injury (ABI) has recently brought into focus the importance of the early hospital-to-home transition
phase. The present study aimed to explore the perspectives of individuals with ABI and their family
caregivers concerning recovery and adjustment during the early transition phase from hospital to home.
The study utilised a qualitative phenomenological design and included 20 participants with ABI and 18
family caregivers. Participants completed in-depth semi-structured interviews at the following time points:
pre-discharge, and 1 and 3 months post-discharge. Data analysis entailed thematic analysis of the
interview transcripts and incorporated open, axial and selective coding techniques. The following four
primary themes emerged from the analysis process: ( 1) adapting to life in the real world; ( 2) variations in
recovery; ( 3) the emotional adjustment rollercoaster; and ( 4) discovering the new me. Collectively, the
findings highlight that while returning home was typically perceived to facilitate ongoing recovery, the
process of adjusting emotionally to life at home posed a significant challenge for many participants during
the transition phase. The clinical/service implications of the findings relate to the need for: ( 1) contextually
appropriate rehabilitation options during the transition phase; and ( 2) the expansion of transition-based
models of service delivery to include targeted psychological intervention approaches.

Keywords: Transition; Qualitative; Recovery; Adjustment; Acquired brain injury

INTRODUCTION
Recovery following acquired brain injury (ABI) is often a long and multi-faceted process that can involve
extensive engagement with formal rehabilitation services (Fletcher, [ 6]; Robertson, [21]; Wertheimer,
Hanks, & Hasenau, [27]). Historically, the rehabilitation continuum following ABI has centred on the acute-
care and inpatient rehabilitation phases with an emphasis on assisting individuals to achieve improved
functional outcomes in preparation for discharge to home and community life (Fletcher, [ 6]; Robertson,
[21]). However, over the past few decades, there has been a growing focus in the literature on the concept
of community integration, which has led to the widespread establishment of community-based
rehabilitation services for individuals with ABI (McCabe et al., [14]; Minnes et al., [15]; Sander, Clark, &
Pappadis, [22]). The volume of literature concerning community integration has expanded transitional
views of recovery and adjustment for the ABI population. As community-based ABI services have
developed, the need for a more co-ordinated transition during the rehabilitation trajectory has become
apparent and consequently, the early transition phase from hospital to home has come under sharp focus
(Turner et al., [23]). Despite this, the perspectives of individuals with ABI concerning recovery and
adjustment during the hospital-to-home transition phase remain poorly articulated.

Preliminary research concerning the process of transition from hospital to home following ABI highlights
that this phase is often perceived as an exciting, yet challenging time for individuals and their families
(Turner et al., [23], Turner, Fleming, Ownsworth, & Cornwell, [24]). In a retrospective qualitative study,
Turner et al. [23] identified the following eight key areas relevant to the transition experiences of 13
participants with ABI and 11 family caregivers: the hospital experience; the transition process; the role of
family caregivers; post-discharge services; friendship networks and community involvement; meaningful
activities and time management; physical and psychological wellbeing; and barriers and facilitators. It was
recommended that future research was necessary to provide an enhanced understanding of how
individuals' perceptions of recovery and adjustment change during the transition process; and to further
conceptualise the transition process within the ABI rehabilitation continuum (Turner et al., [23]).

Studies exploring perceptions of the recovery process after ABI highlight that many factors contribute to
individuals' views of their own process of, and progress towards, recovery over time (Dowswell et al., [ 4];
Johnston, Morrison, MacWalter, & Partridge, [ 9]; Jones, Mandy, & Partridge, [10]). For example, in a
qualitative study on reasons for recovery after stroke (n = 10; time post-injury = 6 weeks to 13 months),
Jones et al. [10] identified two main themes depicting factors that influenced progress after stroke. The first
related to internal factors, such as personal control over progress, maintaining a sense of optimism and
fears of dependency; while the second centred more on external factors, such as the influence of
therapeutic interactions and success with specific markers of independence (e.g., dressing). Jones et al.
[10] concluded that the ways in which individuals perceive their recovery process can be a crucial factor in
sustaining the enthusiasm and perseverance required for living in the community after stroke.

The process of adjustment to injury following ABI has also been shown to influence recovery and long-term
psychosocial outcomes (Kendall, [11]; Ownsworth et al., [18]; Yates, [28]). In a review of the literature
relevant to psychological adjustment after ABI, Yates [28] highlighted that a plethora of theories have been
developed over many decades concerning the issue of adjustment to disability and ABI with terms such as
"adaptation", "adjustment", "acceptance" and "coping" being used synonymously in the literature. Yates
[28] further identified numerous factors that influence adjustment to injury (e.g., emotional well-being,
cognitive functioning) and emphasised the importance of the social context as the enabling environment
for adjustment and successful community integration. The ongoing development of community-based brain
injury services was highlighted by Yates [28] to be of critical importance in facilitating long-term adjustment
for individuals with ABI.

Closely related to the adjustment literature, there is a growing evidence base regarding changes in self-
identity and self-esteem after ABI (Dewar & Gracey, [ 2]; Gracey et al., [ 8]; Muenchberger, Kendall, &
Neal, [16]). In a qualitative study that explored individuals' personal construction of self after ABI (n = 32;
mean time post-injury = 3 years), Gracey et al. [ 8] identified nine themes or personal constructs that
represented how participants described their sense of self; with the most prominent themes being
"experience of self in the world", "basic skills" (cognitive, sensory, physical and social) and "experience of
self in relation to self". Gracey et al. [ 8] concluded that following brain injury, people make sense of
themselves in terms of the meanings and felt experiences they ascribe to social and practical activities. In
a separate qualitative study (n = 6; time post-injury = 1 year to >25 years), Muenchberger et al. [16]
emphasised the importance of identity transition (i.e., the changing sense of self-identify that occurs in
relation to life events and experiences), which was found to be characterised by a dynamic and convoluted
process of contraction, expansion and tentative balance.

In addition to the literature concerning adjustment and self-identity, the impact of environmental factors on
recovery following ABI has been recently documented (Doig, Fleming, & Kuipers, [ 3]; Fleming, Kuipers,
Foster, Smith, & Doig, [ 5]). This research has important implications for brain injury rehabilitation services
and there is ongoing debate concerning the most appropriate context for rehabilitation beyond the post-
acute inpatient phase (i.e., hospital outpatient/centre-based rehabilitation vs. home and community-based
rehabilitation) (Barker & Ziino, [ 1]; Kuipers, Foster, Smith, & Fleming, [12]). Numerous authors have
emphasised the benefits of the home/community context for ABI rehabilitation, including improved
motivation, enhanced collaborative goal setting, greater compliance with therapy regime, and improved
functional outcomes (Barker & Ziino, [ 1]; Doig et al., [ 3]; Fleming et al., [ 5]). Of importance, the literature
suggests that environmental factors can influence the recovery process following ABI.

Collectively, the literature suggests that recovery and adjustment processes appear to be intertwined and
influenced by various environmental considerations. However, the literature has typically focused on the
longer-term community integration phase (Gracey et al., [ 8]; McCabe et al., [14]; Minnes et al., [15];
Ownsworth et al., [18]; Sander et al., [22]; Yates, [28]), with a lack of studies examining perceptions of
recovery and adjustment during the early transition phase from hospital to home. Research exploring these
important constructs is necessary to gain a greater understanding of the factors that influence the
transition process from hospital to home. Such research may also facilitate the development of innovative
intervention approaches that enable a more co-ordinated transition process during the rehabilitation
trajectory after ABI.

As such, the present study aimed to explore the following research questions: ( 1) how do individuals with
ABI and their families perceive the recovery process during the transition from hospital to home, and ( 2)
how does the transition from hospital to home impact upon the adjustment process for individuals with ABI
and their families? The present study forms part of a broader research project that investigated additional
research questions relevant to activity participation and service and support needs during the transition
process (see Turner, Fleming, Ownsworth, & Cornwell, [25]; and Turner, Ownsworth, Cornwell, & Fleming,
[26]).

METHOD

Design
This study utilised a qualitative phenomenological approach to monitor the experiences and perceptions of
participants with ABI and their family caregivers over a 3 month hospital-to-home transition period. This
approach was utilised instead of alternative qualitative approaches (e.g., grounded theory, ethnography)
because of its focus on individuals' subjective or lived experiences (Patton, [20]).

Participants
Recruitment of participants occurred from a metropolitan-based inpatient ABI rehabilitation unit in Australia
on a consecutive discharge basis over a five month period until data saturation was reached. Data
saturation was defined as the point at which no new themes emerged from the interviewing process and
was determined collaboratively by the members of the research team (Patton, [20]). Participants were
screened by a treating allied health professional according to the following inclusion criteria: ( 1) diagnosis
of ABI as documented in a medical report; ( 2) expected to return home upon discharge from inpatient
rehabilitation (i.e., not discharged to a care facility or other hospital); ( 3) aged 16 years or older; ( 4)
adequate English communication skills to participate in an interview; and ( 5) capacity to provide informed
consent. Individuals with a pre-morbid neurological condition or psychiatric disorder were excluded from
the study.

Individuals who met the inclusion criteria of the study and provided informed consent (n = 20) were asked
to identify a family member to participate in the study. A member of the research team contacted the
nominated family caregivers to explain the details of the study and obtain informed consent. One family
caregiver did not provide informed consent and another family caregiver who did provide informed consent
was the primary caregiver of two participants with ABI who were husband and wife. Consequently, in total,
participants included 20 individuals with ABI and 18 family caregivers. Family caregivers included 11
spouses/partners, six parents and one sibling. Table 1 provides a summary of key demographic and injury-
related information for both participant groups.

TABLE 1 Demographic and injury-related information of participants with ABI and their family caregivers

Participants with ABI n Family Caregivers n (%)

(%) or Mean (SD), Range or Mean (SD), Range
Gender
 Male 15 (75) 5 (27.8)
 Female 5 (25) 13 (72.2)
Age (years) 40.2 (14.5), 17–63 46.63 (10.9), 24–65
Relationship status (at time of first interview)
 In a relationship (married/defacto) 18 (90) 17 (94.4)
 Not in a relationship 2 (10) 1 (5.6)
Pre-injury occupational status
 Employed 14 (70) 16 (88.9)
 Unemployed 1 (5) –
 Home duties 3 (15) 2 (11.1)
 Student 2 (10) –
Level of education
 Grade 10 or below 9 (45) 4 (22.2)
 Completed high school 3 (15) 5 (27.8)
 Trade qualifications 7 (35) 2 (11.1)
 University – undergraduate 1 (5) 7 (38.9)
Cause of injury
 Traumatic brain injury 16 (80) –
 Aneurysm/stroke 4 (20) –
Cause of traumatic brain injury (n = 16)
 Motor vehicle accident 7 (43.75) –
 Motor bike accident 1 (6.25) –
 Assault 1 (6.25) –
 Fall 4 (25) –
 Other 3 (18.75) –
Length of stay in rehabilitation (days) 89.6 (71.2), 22-318 –
Length of stay in hospital (days) 147.6 (157.6), 35-776 –
Initial GCS score (n = 18) 8.5 (4.2), 3-15 –
Length PTA (days) (n = 13) 41.2 (23.5), 14-88 –
DRS (discharge) 4.7 (1.8), 2-8 –
FIMTM total score (discharge) 114.9 (9.76), 90-123 –
Note: GCS = Glasgow Coma Scale; PTA = Post-traumatic
amnesia; DRS = Disability Rating Scale; FIM = Functional
Independence Measure
Data collection
The principal method of data collection entailed in-depth semi-structured interviews, which were conducted
with participants prior to their discharge from hospital and at 1 and 3 months post-discharge. For the
purposes of the present study, the transition phase was defined as the period of time encompassing the
discharge preparation process to 3 months post-discharge. This was designed to reflect participants'
experiences just prior to (pre-discharge), and immediately after discharge (1 month), as well as a period of
settling into their home routine (3 months).

The research team developed the specific semi-structured interview schedules for the present study based
on their collective multidisciplinary clinical experience, a comprehensive review of ABI transition-specific
literature (Turner et al., [24]), and the outcomes of a pilot investigation (Turner et al., [23]). The interview
schedules also incorporated the guidelines proposed by Paterson and Scott-Finlay [19] concerning
principles of conducting in-depth interviews with the ABI population. Paterson and Scott-Finlay [19]
highlighted the appropriateness of the semi-structured interviewing format for the ABI population, but noted
that researchers may need to modify the interviewing process to accommodate the specific needs of
individuals with ABI (e.g., the use of additional prompts may be required for individuals who experience
cognitive and/or speech and language deficits). The interview schedules for the present study included
questions about discharge preparation, home expectations, life at home, and hospital reflection with
specific questions structured so as to encourage participants to narrate their perceptions and experiences
of recovery during transition (e.g., how has returning home influenced your recovery?). All interviews were
digitally recorded and transcribed verbatim. Separate to initial rapport building and post-interview
debriefing, the average recorded duration of interviews with participants with ABI was 33 minutes (range = 
15–71 minutes) and 36 minutes for family caregivers (range = 20–70 minutes).

Procedure
The study was approved by the ethics committee of the site of participant recruitment and a university. The
principal researcher conducted confidential separate interviews with participants with ABI and their family
caregivers after informed consent was obtained. Pre-discharge interviews were typically conducted in
person at the hospital during the week prior to an individual's discharge. Post-discharge interviews were
conducted either in person at the hospital or in the person's own home (32/76 interviews), or via telephone
contact for those living in regional/rural locations (44/76 interviews). The mean time between pre-discharge
and the 1-month follow-up interviews was 34 days (range = 27–46 days), and 100 days (range = 94–117
days) between the pre-discharge and 3 month follow-up interviews.

Data analysis
Data analysis entailed thematic analysis of participant interviews, which were transcribed verbatim to
create written narratives. The interview transcripts of both participants with ABI and family caregivers were
thematically analysed together to explore the collective transition experiences of the sample. The specific
thematic analysis process utilised for the present study was adapted from an approach described by
Liamputtong and Ezzy [13], which incorporates open, axial and selective coding.

Open coding is referred to as the "first run" at coding data and involves conceptualising the data and
noting patterns and/or themes. Specific data analysis processes undertaken during this included: ( 1)
reading through all participant interview transcripts; and ( 2) re-reading all participant interview transcripts
and highlighting key words/phrases. Axial coding involves specifying more rigorously the emerging
themes/codes and making connections between them. Specific data analysis processes undertaken during
this included: ( 1) generating a list of descriptors based upon the key words/phrases; ( 2) grouping
descriptors with common meanings to develop categories; ( 3) consensus coding between two members of
the research team to further specify the emerging categories; ( 4) modifying the list of categories and
descriptors according to the results of the consensus coding process; and ( 5) coding all interview
transcripts using the revised list of categories and descriptors.

The final selective coding phase requires a higher level of specificity and abstraction and thus incorporated
in-depth reflection of the completed coding process by all members of the research team to identify a set of
overarching themes. Specifically, the content and intent of each participant statement coded during the
open and axial components of the data analysis process was examined, including comparisons and
associated links between categories. This process facilitated the generation of primary and associated
secondary themes that collectively represent the key aspects of participants' experiences during the
transition phase in accordance with the proposed research questions for the study.

In addition to the systematic processes adopted for data collection and analysis, the following strategies
were utilised to enhance the rigour of the findings and minimise the potential for researcher bias: ( 1)
triangulation of data sources (i.e., two participant groups); ( 2) consensus coding (i.e., a process involving
independent coding of interview transcripts by two members of the research team using a list of categories
and descriptors); ( 3) prolonged engagement of participant contact (i.e., interviews conducted at three
separate time points); and ( 4) reflexivity of interview process, coding and theme interpretations (i.e., in-
depth collaborative discussion between members of the research team including two occupational
therapists, a speech pathologist and a neuropsychologist) (Patton, [20]).

RESULTS
The open and axial components of the thematic analysis process generated 34 main categories, which
collectively represent the key areas of importance pertinent to the transition phase from the perspectives of
participants with ABI and their family caregivers (Turner et al., [26]; in press). Of these categories, 17 were
identified by the research team as having the most relevance to the recovery and adjustment process of
participants with ABI and their family caregivers. In total, 2,450 participant statements were coded into the
17 main categories. Table 2 displays the descriptors for the identified main categories.

TABLE 2 Summary of identified main categories and descriptors

Main Category Descriptors Main Category Descriptors

Alcohol and drug use • Alcohol • Cigarettes •  Life or death • Initial prognosis • Surviving
Coffee/other stimulants • Illegal drugs • Death/dying
Behaviour/personality • Behaviour changes • Personality Living with a • Being "sick" • Being
changes • Anger and aggression •  disability "disabled" • Perceptions of brain
Frustration • Behavioural triggers •  injury • Perceptions of disability
Behaviour management • Sexually • Discrimination
inappropriate behaviour
Cognitive functioning • Post-traumatic amnesia • Memory Motivation and • Being motivated to succeed • 
• Attention • Cognitive retraining •  self-esteem Attitude difference – positive
Memory aids • Organisation and versus negative • Sense of self-
planning • Confusion and worth • Maintaining motivation
disorientation • Keeping one's mind • Sources of motivation • 
active • Decision-making capacity •  Keeping hope alive • Changed
Rigid/concrete thinking views and perspectives on life • 
Regaining confidence • Having
something to look forward to
Emotional/psychological • Feeling depressed • Managing Other injury- • Vision • Hearing • 
well-being and depression • Anxiety • Stress levels related deficits Insight/awareness • Smell • 
adjustment and management • Grief and loss •  Taste • Initiation
Being the "lucky" or "fortunate" • 
Main Category Descriptors Main Category Descriptors
Loss of sense of self and life roles • 
Dealing with disappointment • 
Managing uncertainty • Happiness
• Suicidal ideation • Dealing with
doubt • Acceptance • Seeking
professional assistance • Crying
General health and • Improving fitness levels •  Recovery • Getting back to normal • 
fitness Managing weight gain • Feeling Everything's the same • Same
healthy • Obesity • Going to the versus different • Getting better
gym • Exercise • Diet • Improving • Plateau • 
considerations Decline • Measuring recovery • 
Identifying improvement • 
Celebrating improvement • 
Longing for more
Home environment • There's no place like home •  Relaxation • Taking a break • Having a
Comfort • Being in a familiar holiday • Relaxation strategies
environment • Freedom • Doing
things your own way • Better than
hospital • Doing things at my own
pace
Hospital environment • Physical layout of hospital wards Sleep and • Sleeping • Managing fatigue
• Expecting visitors • Noise levels fatigue • Taking "naps" • Lack of
• Hospital food • Dealing with energy • Sleep difficulties
repetition • Being in prison • Being
supervised • Privacy and security • 
Falls • Reflections of hospital • 
Institutionalisation
Injury/accident • What happened and how? •  Speech and • Communication deficits • 
Memories of the injury/accident •  communication Living with speech deficits • 
First memories after the injury/accident Learning to speak and
• Fear of relapse • Meeting the communicate again • 
person who saved me Communication with others • 
Social speech • Verbosity
Life at home • Initial reaction to going home • 
Feelings about going home • 
Expectations of home life • First day
at home • Difficulties since coming
home • Advantages of being at home
• Being home alone • Attending
appointments
The selective coding process, which entailed further in-depth analysis of the main categories, resulted in
the formulation of the following primary themes, each with associated secondary themes: ( 1) adapting to
life in the real world; ( 2) variations in recovery; ( 3) the emotional adjustment rollercoaster; and ( 4)
discovering the new me. The primary and secondary themes highlight the ways in which processes of
adjustment and recovery evolved throughout the course of the 3 month hospital-to-home transition phase.

Theme 1: Adapting to life in the real world

The first primary theme describes the process of adjustment to returning home and living in the community
that occurred for both participants with ABI and their family caregivers over the initial 3 month transition
period and is comprised of the following secondary themes: ( 1) There's no place like home; ( 2) I'm home
now, but what's next?; and ( 3) dealing with community expectations and opinions.
Returning home upon discharge from inpatient rehabilitation was perceived as a key milestone in the
recovery process by both participants with ABI and their family caregivers. Prior to discharge, participants
expressed feelings of excitement at the prospect of returning home and reported a sense of achievement
as they reflected on the progress they had made while in hospital to prepare for discharge. Furthermore,
participants anticipated that leaving the hospital would assist in bringing closure to a difficult and
challenging chapter of their lives.

[ 1]I: How did you feel when you first found out that you would be going home? Excited! (P8, pre)

I: How do you feel to be going home? P: I feel a certain satisfaction of [achieving] what one was aiming for
(P5, pre).

I: Do you feel ready for [person with brain injury] to come home? C: Yeah, I mean because it has been a
long haul and you know this is the next step...this is the next stage, you know getting him home...I think it
is going to be a fairly emotional thing for him to [come home] because you know as he said, he only went
for the night [i.e., the day the injury occurred] and it is 6 months he has been trying to get home....I wouldn't
be very surprised to see him quite emotional....it will finally be over! (C18, pre)

At the 1 month follow-up, feelings of relief were strongly expressed by both participant groups. As
participants reflected on their hospital experiences, many made statements about the hospital
environment, which appeared to serve as a reminder to participants of how close they had come to death
and a physical symbol of the extent to which their life had changed as a result of their injury. Participants
drew comparisons between the hospital environment and a prison-like environment in which they felt
confined and controlled. In contrast, the home environment was typically viewed as a symbol of freedom
and perceived by participants as their opportunity to regain the life that had been lost while in hospital.

I: How does it feel to be at home? P: Relief! (P12, 1).

I: How have things been since coming home from hospital? C: It's been a relief! (C2, 1)

P: I found it a shock because it's all lock up [i.e., the hospital].... to me it's not a friendly environment; it
feels more like a prison environment (P13, pre).

I: What are some of the things that have helped [person with brain injury]? C: Definitely being home
amongst family and friends. Just your own environment and to get out of that institutional type thing
because you don't realise until you get....how it was like an institution mentality sort of thing....Getting
home, that's the main thing (C18, 1).

Participants' reflections at the 1 month follow-up of their first few weeks at home were often described in
positive terms as they embraced the freedom of being at home. Being able to do "What I want, when I
want" (P7, 1) was central to participants' feelings of happiness during this time. Simple pleasures like
playing with the children, going for a walk, or listening to loud music were enjoyed with great satisfaction by
participants during the first few weeks at home and were observed to ease the process of returning to
home and community life.

I: What have been good things about coming home? P: Freedom! I can play my music, watch the TV, I can
flick the channels go down and get videos out and DVDs, Play station, plug the guitar in (P1, 1).

However, over the course of time following discharge, participants expressed more feelings of uncertainty
and concern for the future. The perceived freedom of the home environment faded throughout the 3 month
period as participants encountered numerous obstacles (i.e., injury-related, environmental, practical,
relationships etc.) that prevented them from doing what they wanted. These obstacles appeared to dim the
feelings of excitement and anticipated closure reported during the pre-discharge interviews and led to
feelings of frustration and despondency for some participants.

P: I'm just being frustrated by the fact that I'm not able to do a tremendous amount of the stuff that I used
to do, you know? (P15, 1)

P: I think I built up going home for so long, but once I'm actually home there's sort of nothing to look
forward to (P11, 1).

Venturing out into the community to engage in day-to-day tasks and other social activities was typically
perceived as an important, yet daunting step to take during the transition phase. For many, the experience
of getting out and about was positive and supportive; while for others, the experience presented further
barriers to contend with (e.g., access, transport). Similarly, perceptions of community expectations and
opinions varied among participants. Some participants reported feeling frustrated at people treating them
"differently"; while others expressed frustrations at the general lack of understanding and awareness of
brain injury in the community.

C: It's just.... people that see her say "Oh gee, you're nearly back to normal, things will be all back to
normal soon" you know, and you think, "Well, no they won't be" they never will be! You know they don't see
the other side of it, they see the person, and see how they were and see them again and say "Well gees,
she's, she's nearly bloody 100% that woman." You know after what she's been through well, they don't
really see it, they only see the face value (C9, 3).

P: Things have been all right except for I've noticed, like just a minute ago standing in the shopping centre
and people butt in before you. I don't know whether I use to be more tolerable of all this stuff or not or
whether I just didn't notice it as much before but generally people seem to be a lot ruder to me now (P19,
1).

Collectively, the early transition period served to facilitate the process of adjustment to home and
community life as participants were required to learn and adapt in order to cope with a changed life in the
real world.

Theme 2: Variations in recovery

The second primary theme portrays participants' perceptions of the process of recovery over time during
the 3 month transition period. It is comprised of the following secondary themes: ( 1) the desire to "get
better"; ( 2) celebrating the small achievements, but longing for more; and ( 3) managing the impact of
injury-related deficits in the community.

Participants typically described their recovery during the 3 month transition period using words related to
one of the following three phrases: "It's sped up" (P11, 1), "gone backwards" (C15, 3), or "stayed the
same" (C10, 1). While most participants felt that returning home had a positive influence on their recovery
and indicated they had continued to make improvements since discharge from hospital, family caregivers
were more likely to report that general recovery, or aspects of an individuals' recovery, had either declined
or plateaued since returning home. For participants with ABI, a strong underlying desire to "get better"
(P18, 1) appeared to serve as motivation to make further gains in the community so that they could get
back to doing "What I want to do" (P3, 3).

P: I think it has sped up because I still... do all the puzzles and memory and just being able to maintain
myself you know a lot better than being [in hospital] where, I don't know, it felt depressing for a little bit
there and I guess I've looked back at it now and I respect that I had to stay there and all that but being at
home is um sort of, it's left it all up to me now to make sure I get better rather than trying to prove it to
doctors and that over there (P20, 1).

P: Hopefully I'll get better and just return to normal (P19, 1).

C: It's kind of hard to tell really but, no, he hasn't gone backwards or anything, I think we are just
plateauing (C20, 1).

C: I was thinking his recovery was going to be a little quicker than that....I thought well you know you
should be able to cope with sort of being up and about and not always walking around and standing up
and stuff but you know a few hours, maybe three hours or something, doing grocery shopping and bits and
pieces. I sort of thought that that would be something Dad would be able to cope with without getting too
tired but that hasn't been the case. It is obviously a step backwards a bit again now (C15, 1).

Participants commonly expressed feelings of satisfaction, pride and joy in celebration of the functional
achievements they had made after discharge from hospital. Being able to walk out to the car or around the
block, doing a household chore or maintenance work, and participating in life-long hobbies were
recognised by participants as important steps in the right direction.

P: Apart from being on the computer which I have been doing, I've just being doing things around the
house.... we've got a couple of water tanks, I emptied out one of the ponds I put out the back and just filled
the water into the pond from one of the water tanks and generally keeping, getting the house internally
clean and working on things (P16, 1).

However, these small gains left many longing for more. Notably, the smaller achievements were often
perceived by participants as merely appendages to the pursuit of more salient targets or goals as they
sought to return a sense of normality to their lives. Specifically, returning to driving and work were the most
commonly identified goals for participants with ABI. While the desire to return to these activities was
evident during the pre-discharge interviews, the reality of returning home and living in the community
during the initial 3 month transition period further strengthened participants resolve to "get back to work"
(P1, 3) and "start driving again" (P11, 1). For some, the strength of their resolve for such activities was
expressed with feelings of extreme frustration (i.e., at not being able to return to work or driving) or
desperation (i.e., at wanting to return to work or driving), which appeared to intensify over time.

I: What about work? P: Well work, I might eventually go back to what I was doing mainly because I like all
the people there (P2, pre).

P: I want to be able to go back to work. That's my major goal. Go back to the job that I was doing, the one
I've done for the last 23 years! (P2, 1)

I: What about transport and driving when you get home? P: With the brother. My brother will take me out
[to the farm] cause he has got some of his cattle out there anyway so he will go out and have a look at
them, so I will go out at the same time (P18, pre).

P: I'm keen as mustard to start driving again for the simple thing it gives you a bit more independence. At
the moment I have to rely on [my wife] or taxis to drive me around and if I want to go out to my farm, see
that's nearly 70km out of town then I have to wait for someone to be able to drive me out there (P18, 1).

However, it was often in the pursuit of these larger goals that the impact of injury-related deficits became
clearer to participants. Of importance, it was the impact of cognitive deficits, fatigue, speech difficulties and
behavioural changes, in addition to other psychosocial issues (e.g., financial hardship, relationship
breakdown, etc.), that posed the greatest challenges to goal attainment in the community. While family
caregivers were most likely to acknowledge such difficulties, it was observed that participants with ABI
were more likely to acknowledge cognitive, speech, behavioural and other psychosocial changes as a
concern during the 1 and 3 month post-discharge interviews when compared with the pre-discharge
interviews.

I: How do you feel about work? P: Yeah I have been keeping a mind for models [i.e., model numbers] and I
was given a DVD recorder and everything as well so I had to read through the manual just to make sure I
still knew the terminologies like HD and video conversion you know. I: How did you feel about that? P:
Fine, I've still got it all (P11, pre).

P: It's bit of a... learning curve getting back into it [i.e., work], like model numbers and everything change
and you know....you've got to sort of try to remember everything and before the accident I'd know model
numbers and everything straight off the cuff and the customers would ask me a question and I'd know it
straight away without having to look for it....I know, I still get a feeling, I'm really exhausted at work.... a
couple of times I've had to go and sit in the lunch room because it's been, starting to get to me so I've got
to sit down and take a bit of a time out (P11, 3).

Theme 3: The emotional adjustment rollercoaster

The third primary theme highlights the diverse and changing nature of emotions participants experienced
throughout the transition phase as they attempted to adjust to the impact of their injury over the course of
the 3 month transition period. The emotional adjustment rollercoaster consists of the following secondary
themes: ( 1) fluctuating emotions; ( 2) the impact of behaviour; and ( 3) staying positive and moving
forward.

The transition phase was an emotionally charged time for both participants with ABI and their family
caregivers. One participant described the journey as a "rollercoaster of emotions" (P19, 1) in which her
emotional state fluctuated constantly throughout the discharge preparation period and initial 3 months at
home. As has been highlighted, feelings of excitement and relief were commonly expressed during the pre-
discharge interviews followed by feelings of sadness, frustration and anger following discharge as the
reality of one's injury and subsequent dependency became more apparent over the course of time. These
negative emotional states were typically associated with the disappointment participants experienced as
they came to the realisation that their pre-discharge expectations of community life were often not met
once at home.

P: I expected to just be happy, real happy to get out. It was pretty depressing but only sort of sometimes, I
don't know, sometimes you sort of go in and out, like you get real depressed (P14, 3)

C: I thought it would be better than it has been. I did not really expect the depression and the, you know,
the agitation that has happened, I just thought, oh, we would be okay, we are going to be normal and he
will be okay, he would be able to go to gym, be able to do all his housework and you know....He just, you
know, he just will not get off that chair half the time (C2, 1).

While many participants reported feeling "low" or "depressed" at the 1 and 3 month post-discharge
interviews, only six participants with ABI and three family caregivers received formal psychological
intervention during the transition period. However, those who did receive formal psychological support
typically reported positive benefits with respect to facilitating emotional adjustment. Several factors were
seen to influence utilisation of formal psychological support services, including limited access and a
general reluctance to seek such support by participants.
C: When I spoke to you the last time, I said to you I needed to get him [person with brain injury] to go and
see a psychologist and he was fighting it. I ended up talking to the local doctor... I just said to the doctor "I
can't handle it; he has to see a psychologist because it's just not working and it's getting worse". The
doctor talked him into seeing one.... Luckily he was able to get into the psychologist straight away, I mean
that was so good, in a week I think he was in to see her and she was a godsend. She really was! Since he
has seen the psychologist, [he's] a lot better (C5, 3)

P: Everything is going great, I am an extremely lucky man. I have a wife that cares about me and I've
managed to find the right people to fit with my idea of what's necessary to get this where it's going...I've
been to see a psychologist who is also a neuropsychologist and that has come good.... I've got a smart
psychologist, one who is a real person and actually told me the meaning of some of these things that were
happening - cognitive fatigue, etc. Which if people explain to one what is going on, if you understand
what's happening, you can then take steps to do something about it (P5, 3).

The impact of the emotional adjustment process was perceived by some participants to entail counter-
productive behavioural responses in which participants were seen to either "blow up" (P15, 3) in outbursts
of anger and frustration and/or become withdrawn. Specific behavioural changes reported by participants
included verbal and physical aggression, running away, and engaging in activities that had been advised
against (e.g., driving while not medically cleared to do so). However, some participants were also seen to
become more withdrawn over the 3 month transition phase, which often led to a sedentary lifestyle and
further compounded participants' feelings of boredom. Of importance, the behaviours of participants with
ABI were seen to have a significant impact upon the well-being of family caregivers, who were more likely
to report and discuss such matters.

C: He [person with brain injury] was hitting things, screaming, yelling, swearing with a lot of aggression in
the voice and....it went on for quite a while and then he started picking up everything and he went to leave
and he said he was going to try and get himself back to [previous home].... It got a bit worse, I ended up in
tears and I phoned his parents and that is when he started to calm down and it was like, what did you
phone them for, and I rang them up and spoke to them and they said we will take him home, so he did, so
he spent the weekend there (C1, 3)).

C: Well, there would be arguments if he would actually sit. There were some, I would try talking to him and
he would just go blank on me. He would get up and walk away....Most of the month that he's been home
he has been hidden away in the office playing computer games (C5, 1)

Despite the rollercoaster of emotions experienced by participants and the impact of behavioural changes,
many participants reported an underlying need to, "Pick myself back up and start all over again" (P7, 3).
While some struggled to do so, participants consistently reported the need to stay positive and move
forward irrespective of the challenges that lay ahead. Notably, such sentiments were more commonly
expressed at the 3 month post-discharge follow-up. Furthermore, for some participants, this attitude of
optimism appeared to reflect an intrinsic quality of their personality; while for others, it was stated more in
hope for the future or in reference to advice provided to them from others.

P: You've got to [push yourself], and that's what I've always done in life. Not just since the accident but
always. You set yourself a goal.... It's got to be achievable with a certain amount of effort put into it and it
doesn't matter what it's for whether it's mustering cattle or bloody building a new fence.... that way you just
push yourself that little bit....that's what I've always done in life, not just since the accident (P18, 3).

C: I think his main attribute has been his attitude. His attitude, he's always been a very positive optimistic
person anyway and there's very little that actually knocks [him] down....He's the most resilient person I
know, very resilient and so I think it's that bounceability that he can see the positive side in everything
(C17, 3).

P: You've got to stay positive because if you don't stay positive you just lose it. Well that's what I reckon
anyway (P6, 3).

Theme 4: Discovering the new me

The final primary theme depicts the process of discovery participants experienced as they attempted to
make sense of the "new me" throughout the transition phase and incorporates the following secondary
themes: ( 1) Grieving for the old me; ( 2) learning to understand the new me; and ( 3) embracing the new
me.

While it has been previously described that the transition phase was an emotionally charged time for
participants with ABI and their family caregivers, it was also a time of reflection and acceptance. Feelings
of grief were commonly expressed as participants sought to "come to terms" (P20, 1) with the enormity of
what had happened to them and their life. As part of this grieving process, some participants were
observed to ask the question, "Why me?"(P9, 1), as they searched for meaning and understanding.
However, for most, the grief was directly associated with the feelings of loss they were experiencing.
Returning home appeared to reinforce to participants the things they could no longer do as a result of their
injury, which further intensified the sense of loss they were feeling.

P: Yeah it just, and also having the thought of why me, I'm only 44, why couldn't it be someone else that's
been in jail or I'm not a bad person, it could have been someone else, why me? (P9, 1)

C: I just think he's finding it hard to cope with his mood swings, the tiredness, the things that he can't do
that he was doing before the injury. I think it's all of a sudden hit [person with brain injury] that his lifestyle
has got to change (C4, 3).

P: It's just more frustration you know the things that you took for granted that I can't do now. I can't play
with the children the same, I can't do my own hair, I can't just make the bed and do the housework....and
like people think, "Oh you've got a house cleaner and all that," well I would just give it all up to do it myself
(P13, 1).

Learning to understand and embrace life after returning home from hospital posed a significant challenge
for many participants throughout the transition phase. Some participants clearly struggled with acceptance
and expressed an attitude of denial. One participant described his journey in the following way: "It's like
being in a dream, can someone wake me up" (P12, 1). Notably, possible awareness deficits were evident
for participants with ABI in statements that indicated their frustration at others not understanding or
underestimating their capabilities; while for family caregivers, frustration was expressed in terms of the
person with ABI not identifying an issue as a problem or reporting that everything was completely fine.
Ultimately, participants' awareness of their injury and how it impacted upon their life was seen to influence
the process of adjustment to injury throughout the 3 month transition period.

P: I still feel like I can do what I can do so the big problem I see is that no-one will believe I can do what I
do (P1, 3).

C: When you talk to him [person with brain injury], he probably won't see what I've told you about the
paranoia and that sort of stuff. He probably won't even bring any of that up because he can't see that he's
got a problem with it....He thinks everything is fine! (C16, 3)
P: I think when I was up in [the rehabilitation unit], I still wasn't accepting all this and accepting what's
happened, like waking up. I was in shock for weeks just going, what's this? Now I've just come to terms
with it all, I've accepted it all and now, I'm just going to bite the bullet and go along with all this process so
that it can take me back to normal. The biggest thing I've found through the whole thing was acceptance,
just to accept what's happened and I don't fight it (P20, 3).

Despite the challenges experienced by many, a small proportion of participants were observed to positively
re-appraise their situation and embrace their new life during the transition phase. Such participants often
referred to themselves as "The lucky ones" (P17, 3), justifying that their injury had been less severe or the
impact on their day-to-day functioning less profound when compared with others they had observed. Some
participants even expressed feelings of personal growth as they described the impact of their injury on
their lives. Such feelings were further seen to influence participants' sense of self-worth and motivation to
make further improvements. Participants who were able to positively re-appraise their situation and
embrace their new life during the 3 month transition period also described more favourable outcomes with
respect to functional activities, personal satisfaction and quality of life. Positive benefits with respect to
emotional well-being were also noted for the family caregivers of participants with ABI who demonstrated
greater positive appraisal of their post-injury circumstances. However, it also appears that family
caregivers were pivotal in supporting participants with ABI to adapt to changes in their personal abilities
during the transition period and thereby embrace a new sense of self.

P: I know how bad it could've been and being in rehab, like there's many different levels you know? Many
different people with different sorts of injuries, and I felt lucky that I wasn't as bad as some people....I'm
fairly lucky in that case. But I guess it's just one of those sort of things that happened like I don't have any
memory of the accident or anything and yeah, I'm sort of, I've sort of come to terms with that, but things
could have been a lot worse (P11, 1)

P: I think it's been a very eye opening experience to say the least... I appreciate a lot of things that I....
probably took for granted you know, getting up every morning. I'm just happy to get up and have a shower
and be able to go to work (P19, 3).

C: I think through this experience, it's certainly been a life changing experience....As I said, when you have
something like this happen, it changes your perspectives pretty quickly. It's an opportunity for [person with
brain injury] to sort of re-look at whether doing the things he was doing and working as hard as he was
doing and trying to push himself to be as quick as the boss wanted him to be, whether that is all worth it or
whether it's just a way of restructuring life so, number one, he can be there for [family], and number two, it
cuts down his stress levels which helps reduce the risk of this happening again (C15, 1).

DISCUSSION
The present study identified the following four primary themes relevant to the perceptions of recovery and
adjustment of individuals with ABI and their family caregivers during the early transition phase from
hospital to home: ( 1) Adapting to life in the real world; ( 2) variations in recovery; ( 3) the emotional
adjustment rollercoaster; and ( 4) discovering the new me. Collectively, the results highlight the critical
nature of this period for facilitating ongoing recovery and adjustment. While returning home was perceived
as a key milestone in the recovery process and an important catalyst for continued functional
improvement, managing one's psychological well-being in conjunction with adjusting to a changing sense
of self, posed a significant challenge for recovery in the community.

The findings of the first two primary themes (i.e., adapting to life in the real world and variations in
recovery) relate closely to the first research question; how do individuals with ABI and their families
perceive the recovery process during the transition from hospital to home? In particular, participants
reported that returning home had a positive influence on their recovery from injury. Comparisons were
commonly made between the hospital and home environments, with numerous advantages of the home
environment for recovery being noted by both participants with ABI and their family caregivers. Specifically,
the home environment was typically perceived to symbolise freedom whereby participants could attempt to
return a sense of normality to their lives. In contrast, reflections of the hospital environment typically
centred on feelings of confinement and being controlled.

These findings further underpin the importance of environmental considerations in facilitating the recovery
process for individuals with ABI. The results demonstrated that transitioning from hospital to the home and
community environment served to facilitate the process of adjustment as participants were required to
adapt in order to cope with a changed life in the real world. While the present study did not specifically
examine the impact of the environment for participation in formal rehabilitation programmes during
transition, the findings highlight the benefits of the home environment as perceived by individuals with ABI
and their caregivers, and thus support the need for environment-focused and contextually appropriate
rehabilitation options during the early transition phase.

Furthermore, the findings of the present study underscore the benefits of the home environment for
facilitating greater participation in everyday meaningful tasks, which participants perceived to have a
positive influence on their recovery during the transition phase. A more in-depth exploration of the issue of
participation and meaningful occupation for this sample was recently documented by Turner et al. [26].
This study highlighted numerous benefits (e.g., establishing structure/routine and occupying one's time)
and barriers (e.g., formal and informal restrictions) to participation in meaningful occupations during
transition. Turner et al. [26] emphasised that managing the impact of perceived barriers posed the most
significant challenge to the pursuit of independence during the transition phase. The findings of the present
study further emphasise the need to better equip and support individuals and their families with
information, skills and strategies to effectively manage the impact of barriers to participation and functional
recovery and thereby ease the transition process to home and community life.

The findings of the third and fourth primary themes (i.e., the emotional adjustment rollercoaster and
discovering the new me) relate closely to the second research question: How does the transition from
hospital to home impact upon the adjustment process for individuals with ABI and their families? For many
participants, the early transition phase was pivotal to enhancing awareness, adjusting to injury and, more
generally, the process of constructing a new self-identify. The "rollercoaster of emotions" signified the
evolution of emotional adjustment throughout the transition phase and highlighted the considerable
fluctuations in emotional state experienced by participants. Participants described marked emotional
"highs" and "lows" that were typically related to the excitement of returning home and the frustrations of
unmet expectations. The process of emotional adjustment during transition was typically an individual
journey that appeared to be more generally associated with participants' experiences of success and/or
failure in goal attainment and the subsequent emergence of self-awareness over time. For some
participants, the process of emotional adjustment led to the development of greater acceptance and
positive re-appraisal of their post-injury circumstances over the course of the 3 month transition period and
the emergence of personal growth as they attempted to move forward with their lives.

With respect to self-awareness, the present findings suggest that many factors contributed to participants
developing an enhanced understanding of the impact of their injury for daily life during the transition phase
including the benefits of the home environment and feedback from task performance. Self-awareness of
post-injury impairments has been identified in the literature as an important element in the emotional
adjustment process for individuals with ABI (Ownsworth & Fleming, [17]; Ownsworth et al., [18]). The
present findings support that the transition from hospital to home is a key time in which self-awareness of
deficits emerges and appears to be associated with various emotional reactions. Such findings further
highlight the need for interventions to support individuals to cope with the changes in self-image and
identity during this period.

The findings related to the emotional adjustment process are consistent with previous literature
(Ownsworth et al., [18]; Yates, [28]), including the Y-shaped model proposed by Gracey, Evans, and Malley
[ 7], which represents an integration of research relating to self and social discrepancies, awareness,
coping style and self-regulation. The model proposes that the process of adaptation and reintegration into
society following ABI involves developing awareness of post-injury changes, exploring the sense of threat
to self that these pose, and adaptive resolution of social and psychological discrepancies. As awareness,
subjective threat and maladaptive coping (e.g., avoidance and withdrawal) can increase over time, Gracey
et al. [ 7] emphasise the need for therapeutic interventions to consolidate and reinforce new adaptive self-
representations. Gracey et al. [ 7] advised that this process may be initiated during intensive rehabilitation
and then continued beyond rehabilitation with appropriate supports.

Consistent with the Y-Shaped Model, the present findings suggest that the transition period is a key time in
which individuals begin to experience discrepancies between their pre-discharge expectations of self in the
community (i.e., pre-injury self) and their emerging sense of current or actual self. This aspect of the
adjustment process is consistent with the divergent aspect of the Y-Shaped Model (i.e., represented by the
top of the "Y"). Gracey et al. [ 7] argued that a convergence of the self in one's current context with the
aspired self is required to form an updated, adaptive, more realistic self-representation. While it is not
possible to determine the extent to which participants in the present study achieved such convergence at 3
months post-discharge, it was evident that the transition from hospital to home was a key period in which
self-discrepancies both emerged and began to be resolved as part of the emotional adjustment process.
Therefore, the findings underpin the importance of psychological interventions during the transition phase
to facilitate adjustment and growth.

Clinical implications
The present findings have various implications for clinical practice, especially in relation to the
environment/context in which transition-based interventions are provided, the importance of enabling
recovery through participation, and incorporating psychological interventions into transition-based models
of service delivery. The findings draw attention to the benefits of the home and community environments
for facilitating functional recovery and adjustment during transition. While existing hospital discharge and
outpatient programmes may serve to address some of the needs of individuals with ABI and their families
during the transition phase, the findings suggest that greater attention be paid to the contexts in which
therapeutic interventions occur to maximise rehabilitation outcomes in the community. Specifically, it is
suggested that clinicians and policy advisors explore the implementation of more contextually appropriate
rehabilitation options (e.g., home and community-based programmes) during the early transition phase.

The findings also highlight the critical importance of addressing psychological and emotional adjustment
issues during the hospital-to-home transition phase. The majority of participants in the present study
received little or no formal psychological intervention during the 3 month transition period. It is
recommended that transition-based models of service delivery systematically and routinely screen for
emotional distress to determine the need and optimal timing for psychological intervention during the
transition period. Such intervention is necessary not only to facilitate the adjustment process for individuals
with ABI during this period, but also to reduce the strain placed on informal networks of support (i.e., family
caregivers), who were shown to be impacted upon by the emotional well-being and adjustment of
individuals with ABI.

Methodological considerations
While the present findings draw attention to many key issues relevant to the recovery and adjustment
process of individuals with ABI and their family caregivers during the early transition phase, some
methodological considerations need to be acknowledged. In particular, the study was conducted in a
specific cultural context and service setting that did not entail participation in a formal transitional living
programme. Consequently, the extent to which the findings may be transferable to other settings is
uncertain. The study also explored the early transition phase (i.e., first 3 months post-discharge) and
therefore did not examine how experiences and outcomes may have varied in the longer term following
discharge (e.g., 6 or 12 month follow-up). Additionally, the study did not consider the views of health
professionals, which may have enabled a more comprehensive understanding of the issues associated
with transition. Despite these limitations, the study utilised a prospective longitudinal design (i.e., three
data collection points) with rigorous data analysis techniques to yield clinically relevant findings pertinent to
the recovery and adjustment process of individuals with ABI and their family caregivers during transition.

Future research and conclusion

This study explored the perspectives of individuals with ABI and their family caregivers concerning the
recovery and adjustment process during the transition phase from hospital to home. The findings highlight
that while returning home was typically perceived to positively influence ongoing recovery in the
community, the process of adjusting emotionally to life at home posed a significant challenge for many
participants. The clinical/service implications of the findings relate to the need for ( 1) contextually
appropriate rehabilitation options during the transition phase, and ( 2) the expansion of transition-based
models of service delivery to include screening for emotional distress and targeted psychological
intervention approaches. It is recommended that further research examines the development and
evaluation of innovative and tailored approaches to transition-specific service delivery.

Acknowledgments
The completion of this study was supported by an Australian Post-Graduate Award held by Benjamin
Turner. We also gratefully thank the staff in the Brain Injury Rehabilitation Unit at the Princess Alexandra
Hospital. Our gratitude is also extended to the participants and their families.

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Footnotes
1
P = Participant with ABI, C = Caregiver, I = Interviewer statement or question, numbers refer to participant
numbers, Pre = Pre-discharge, 1 = 1 month, 3 = 3 months

~~~~~~~~
By Benjamin Turner; Jennifer Fleming; Tamara Ownsworth and Petrea Cornwell

Reported by Author; Author; Author; Author

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Practice guidelines for program evaluation in community-based
rehabilitation. By: Grandisson, Marie; Hébert, Michèle; Thibeault,
Rachel. Disability & Rehabilitation. Jun2017, Vol. 39 Issue 12,
p1243-1251. 9p. 2 Diagrams, 2 Charts. Abstract: Purpose:This
paper proposes practice guidelines to evaluate community-based
rehabilitation (CBR) programs. Method:These were developed
through a rigorous three-phase research process including a
literature review on good practices in CBR program evaluation, a
field study during which a South Africa CBR program was
evaluated, and a Delphi study to generate consensus among a
highly credible panel of CBR experts from a wide range of
backgrounds and geographical areas. Results:The 10 guidelines
developed are summarized into a practice model highlighting key
features of sound CBR program evaluation. They strongly indicate
that sound CBR evaluations are those that give a voice and as
much control as possible to the most affected groups, embrace the
 challenge of diversity, and foster use of evaluation processes and
findings through a rigorous, collaborative and empowering
approach. Conclusions:The practice guidelines should facilitate
CBR evaluation decisions in respect to facilitating an evaluation
process, using frameworks and designing methods.Implications for
rehabilitationTen practice guidelines provide guidance to facilitate
sound community-based rehabilitation (CBR) program evaluation
decisions. Key indications of good practice include:• being as
participatory and empowering as possible;• ensuring that all,
including the most affected, have a real opportunity to share their
thoughts;• highly considering mixed methods and participatory
tools;• adapting to fit evaluation context, local culture and
language(s);• defining evaluation questions and reporting findings
using shared CBR language when possible, which the framework
offered may facilitate. [ABSTRACT FROM AUTHOR] DOI:
10.1080/09638288.2016.1189604. (AN: 122253797)
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live&scope=site">Practice guidelines for program evaluation in
community-based rehabilitation.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 51
Práticas territoriais de cuidado em saúde mental: experiências de
um centro de atenção psicossocial no município do Rio de Janeiro
Castro, Leonardo Martins; Maxta, Bruno Souza
Bechara. SMAD. Revista Eletrônica Saúde Mental
Álcool e Drogas. Vol. 6 (1), 2010 pp. 1-11. Publisher: Universidade
de São Paulo, Escola de Enfermagem de Ribeirão Preto; [Artículo]
Abstract: Este artigo apresenta o campo da saúde mental e da
reabilitação, com base na comunidade, orientados pelos projetos e
práticas de cuidado. Objetivou mostrar a importância das práticas
territoriais de cuidado na reabilitação psicossocial. Como
procedimentos metodológicos, usou-se o estudo qualitativo e
descritivo de práticas territoriais em um serviço de saúde mental.
Os resultados mostraram que as atividades territoriais são
desenvolvidas de maneira coletiva. Elas consideram os desejos, as
habilidades, as necessidades e os projetos de vida dos
participantes. Pode-se observar que possibilitam o convívio e a
produção de significados no cotidiano, bem como recriam
potencialidades no cuidado em saúde mental.
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 direct=true&db=lsdpd&AN=122333&lang=es&site=eds-
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live&scope=site">Práticas territoriais de cuidado em saúde mental:
experiências de um centro de atenção psicossocial no município do
Rio de Janeiro</A>
Base de datos: PSICODOC

Registro: 52
Process Evaluation of a Pilot Intervention for Psychosocial
Rehabilitation for Service Users with Schizophrenia in North West
Province, South AfricaBrooke-Sumner, Carrie; Selohilwe, One;
Mazibuko, Musawenkosi Sphiwe; Petersen, Inge. COMMUNITY
MENTAL HEALTH JOURNAL; OCT 2018; 54; 7; p1089-p1096 (AN
000445210200021)
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live&scope=site">Process Evaluation of a Pilot Intervention for
Psychosocial Rehabilitation for Service Users with Schizophrenia in
North West Province, South Africa</A>
Base de datos: Social Sciences Citation Index

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Psychosocial rehabilitation in developing countries. By:
Rangaswamy, Thara; Sujit, John. International Review of Psychiatry.
Oct2012, Vol. 24 Issue 5, p499-503. 5p. Abstract: Psychosocial
rehabilitation (PSR) is an essential component in the management
of schizophrenia. It is especially relevant in the improvement of
functioning and the quality of life of these individuals. The scarcity of
mental health personnel and lack of training in many low and middle
income countries (LAMIC) has led to low priority being accorded to
PSR. This paper describes some of the PSR initiatives in LAMIC,
especially those undertaken after disasters, home-based
interventions and community-based rehabilitation programmes.
[ABSTRACT FROM AUTHOR] DOI:
10.3109/09540261.2012.719863. (AN: 82469160)
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 Cortar y pegar: <A href="http://ez.urosario.edu.co/login?
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direct=true&db=pbh&AN=82469160&lang=es&site=eds-
live&scope=site">Psychosocial rehabilitation in developing
countries.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Psychosocial rehabilitation in developing countries.

Introduction
Psychosocial rehabilitation (PSR) is an essential component in the management of schizophrenia. It is
especially relevant in the improvement of functioning and the quality of life of these individuals. The
scarcity of mental health personnel and lack of training in many low and middle income countries (LAMIC)
has led to low priority being accorded to PSR. This paper describes some of the PSR initiatives in LAMIC,
especially those undertaken after disasters, home-based interventions and community-based rehabilitation
programmes.

The inadequacy of anti-psychotic medication, including second generation drugs, in ameliorating negative
symptoms of psychotic disorders and bringing about enhanced functioning has brought into sharp focus
the role of psychosocial rehabilitation (PSR). The main objective of PSR is to enhance the quality of life of
the person recovering from severe mental disorders (SMD) that in their aftermath frequently leave some
impairment in psychological and social functioning. This in turn reduces the efficiency of performance of
social roles and places the individual in a position of social adversity. PSR therefore aims at reducing the
impact of the residual impairment and increasing the individual's efficiency in social performance.

The practice of PSR over the last few decades has undergone gradual refinement and sophistication as a
result of extensive research conducted by, among others, Anthony and co-workers in Boston ([ 2]a, 1988b;
[ 3]), Test and Stein's Training in Community Living programme in Wisconsin ([24]), and Liberman and his
co-workers from California ([13]). These efforts have resulted in a multitude of intervention programmes in
the USA and the UK. The needs and demands of clients and family members have also contributed to the
growth of the PSR movement, especially with the acceptance and integration of the recovery model within
the services. This has, however, to a large extent been restricted to higher income countries in the west.
Most low and middle income countries (LAMIC) have extremely limited human resources and struggle to
offer even basic primary mental healthcare. The availability of psychiatrists in low and lower-middle income
countries ranges from 0.05 to 0.54 per 100,000 head of population. The figures for other mental health
professionals such as psychologists (0.02 to 0.14 per 100,000) and psychiatric social workers (0.01 to 0.13
per 100,000) are even lower ([31]). Absence of a national mental health policy or programme in many
LAMIC makes it unrealistic to expect that psychosocial interventions would be high on their agenda. One
can therefore conclude that although mental health is part of the primary healthcare system, very little
active psychiatric treatment or PSR rehabilitation happens at this level ([30]).

While psychiatric rehabilitation today has international and national organizations devoted to its
furtherance, including a few internationally reputed journals devoted to the subject, it appears almost futile
to hope that a small band of workers in this field in LAMIC will be able to offer structured rehabilitation
programmes, many of which require intensive training for prolonged periods of time. Added to this is the
lack of enthusiasm on the part of practitioners to shift their focus on rehabilitation from mere occupational
therapeutic interventions targeted at long-stay patients in mental hospitals to one encompassing the entire
range of non-institutionalized, community-based patients' needs. In many South Asian countries, much of
the psychosocial rehabilitation programmes are run by non-governmental organizations (NGOs) such as
the Schizophrenia Research Foundation of India (SCARF) and the Richmond Fellowship in India, Fountain
House in Pakistan and Sahanaya in Sri Lanka.

While we are aware of many PSR programmes in LAMIC, we found little in terms of documentation of their
activities and even less research. Hence this paper only offers a select review of some of the recent
developments in rehabilitation research and practice from these countries. It is not a comprehensive
statement of all PSR activities in the region.

PSR following the Asian Tsunami

The tsunami of 2004 that devastated the coastal regions of several countries including Sri Lanka, India,
Thailand and Indonesia among others resulted in a global response to the catastrophe. A major area that
was taken up for intervention was psychological trauma. The concept of using lay community health
workers (CHWs) to deliver mental healthcare was carried out on a large scale (across multiple sites and
countries).

This effort under the guidance of the WHO was the first major instance of an organized response at the
community level where psychosocial interventions were provided by lay CHWs. The overall success of this
effort has to a certain extent provided an impetus to the PSR movement in the affected countries. The
service providers were now more open to the concept of CHWs being used to deliver mental healthcare
and were seen as a valuable resource that could be used to bridge the mental health gap.

The objectives of the PSR efforts during the tsunami were to provide basic mental health services in
affected communities and aim to restore security, independence, and dignity to individuals, promote
community resilience, and prevent psychiatric morbidity and further social disruption.

Using a train-the-trainer model, NGO workers, teachers, and local healthcare providers were trained in
psychosocial care by mental health professionals. Those who received training in turn trained CHWs
working in the disaster areas to offer basic mental healthcare to survivors ([ 5]).

The interventions for child survivors included returning to routines of daily living, organizing play groups in
relief camps. In areas less affected, primary schools were reopened and trained teachers provided
psychological support in the form of play therapy. These included fantasy-eliciting techniques, such as
drawing, doll play, storytelling, puppet shows, and group painting activities to enable children to express
their feelings of fear, grief, and anger through play activities ([ 5]).

Interventions that were implemented in group settings acted to normalize the experience and minimize the
stigma that is inherent in individualized psychotherapy. Severe cases were referred to the nearest
psychiatric facility ([ 5]).

Similar interventions have been reported by SCARF, SNEHA ([28]) and several other NGOs that provided
PSR to tsunami survivors. While it is generally accepted that these interventions are useful and help in the
recovery process, there is no robust evidence (such as from a randomized control trial) to support this. The
ethical dilemma that such a trial would present also precludes such evidence being generated.

Intervening at home: Empowerment and capacity building for carers of chronic mentally ill
A large number of individuals with schizophrenia in developing countries remain untreated in the
community ([ 9]; [12][17]). In India, it has been highlighted that patients drop out soon after being referred
to day care programmes ([11]; [23]). The leading factors in this seem to be lack of interest, awareness and
differential needs of patients and caregivers ([10]). There is an urgent need to develop alternative
treatment strategies, to cater for ill people who remain at home and offer them simple PSR techniques.
Home-based care has been shown to be effective in intervening with mentally ill patients within their own
homes. The effectiveness of the strategy was highlighted by a randomized control trial to compare home-
based care and standard hospital care for patients with severe mental disorders ([15]). In this study, of the
189 patients aged 18 to 64 living in the catchment area, 92 were randomized to home-based care (daily
living programme) and 97 to standard hospital care. At three-month follow-up of 68 home care and 60
hospital patients, it was observed that home care reduced hospital stay by 80% (median stay six days in
the home care group, 53 days in the hospital group) and did not increase the number of admissions
compared with hospital care. On clinical and social outcome there was a non-significant trend in favour of
home care, but both groups showed big improvements. Home care patients required a wide range of
support in areas such as housing, finance and work. Only three patients dropped out of the programme.

In China, the home care programme has been developed as a major community healthcare service as part
of the primary care programme ([22]) and the trend was towards marked clinical improvement and
diminished relapse rates. A similar study in Spain suggested that a combination of outpatient follow-up
care and in-home care centred on psychosocial skills training was more effective than conventional
treatment in improving general symptoms among individuals with schizophrenia ([14]). A Cochrane review
([27]) concluded that home care crisis treatment, coupled with an ongoing home care package, is a viable
and acceptable way of treating people with serious mental illnesses with a recommendation that for the
approach to be widely implemented more evaluative studies were needed.

In India, an early study evaluated the effectiveness of home care for schizophrenia patients ([18]). As part
of the study 27 patients with never treated, first episode schizophrenia were treated in their own homes by
a visiting nurse trained in follow-up assessment and counselling. The outcome of this group was compared
with a similar group of 27 patients who underwent initial mental hospital admission and subsequent
outpatient follow-up. Both groups were followed up for 6 months. The results revealed that the home
treatment resulted in better clinical outcome, better social functioning of the patient and greatly reduced the
burden on the patients' families. This treatment modality was also noted to be more economical.

In a recently concluded randomized controlled trial in India where the effectiveness of a collaborative
community-based care (where a CHW visited the home of the patient to deliver interventions) was
compared with facility-based care (care provided as outpatient services) for people with schizophrenia and
their families ([ 4]; [ 6]), it was seen that the intervention was acceptable and effective especially among
patients who were more symptomatic and had greater disability. The feasibility of the effectiveness of
delivering psychosocial interventions through CHWs was also established.

Home-based care for individuals with schizophrenia and other chronic mental illnesses is a feasible
strategy, especially in resource-sparse countries and the effectiveness of this is seen in the reduced rates
of hospitalization for crisis management, social outcomes and reduction of caregiver burden. Family
members will need to be active partners in this intervention.

Community-based rehabilitation in India

Community-based rehabilitation (CBR), essentially an off-shoot of community-based medical care was first
initiated in the 1980s under the impetus provided by the National Mental Health Programme of India.
Community care strategies involve operating mental health clinics in the community and a focus on mental
health literacy in the general population.

Critical strategies for rehabilitation have been the use of lay community volunteers trained in recognition,
identification and referral of individuals with mental disorders performing the first level of rehabilitation. This
move is seen as an important approach to incorporate CBR into the community mental health (CMH)
programme ([25]). Rehabilitation has also been facilitated by networking with governmental and non-
governmental organizations involved in social and developmental activities.

NGOs also embarked on community-based programmes, which although efficacious and cost-effective
were always restricted by their dependency on time-limited funding ([ 7]; [25]). However, collaborations
with NGOs are seen as an important approach to reach out to a wide geographic area, with a shared
economic commitment of the collaboration ([16]).

The community-based programmes have suffered from poor allocation of resources, insensitivity to the
needs of people with mental illness on the part of both professionals and policy planners, and indifference
to mental health in general. Sustainability and continuity of programmes, especially by NGOs are largely
limited as most programmes are time-bound projects, contingent upon the funding resources.

Community-based rehabilitation in other low and middle income countries

[ 8], drawing on examples from CBR in Afghanistan, comments that the concept of empowerment can
prove 'problematic', while 'enablement' is culturally more acceptable in Afghanistan. Bhutan has a mental
policy and plan but no mental health legislation. Financing is mainly orientated towards training of health
workers and providing essential drugs. Treatment, including the supply of psychotropic drugs is provided
free by the government. With focus on integrating mental healthcare into the primary care system, there is
virtually no community mental health programme. Lack of human and financial resources for community
mental health is a significant barrier to progress in the treatment of patients in the community ([32]). In
Bangladesh, mental health activities are generally concentrated on hospital-based psychiatry, which is
grossly inadequate. There is an increasing awareness of the need to shift the emphasis to community-
based mental health programmes ([34]).

The situation of mental healthcare in Nepal is worse than in its neighbouring countries. The main
contextual challenges for mental health in Nepal are the provision of adequate manpower, spreading the
services across the country, increasing public awareness, and formulating and implementing an adequate
policy ([21]). In Pakistan, mental healthcare is part of the primary healthcare system. Although there is a
community mental health programme, there is very little community-based rehabilitation in place. The
NGOs have largely filled the vacuum for mental healthcare. The community mental health programme
operated by the Pakistan Association for Mental Health provides basic mental healthcare to the patient's
doorstep, involving local resources and primary health providers in the community ([29]). Maldives has no
community mental health or community-based rehabilitation programmes ([33]).

Evaluation of community-based rehabilitation

Literature on evaluation of the CMH/CBR programmes is sparse. Most NGOs involved in mental
healthcare, do not often have any established mechanism of monitoring and evaluation through external
sources ([19]). Evaluation is often needs-based and restricted. One recent study focused on developing
and testing indicators for successful integration of community-based rehabilitation (CBR) mental health
and development (MHD) services. An in-depth study evaluation of two organizations in Sri Lanka and India
that successfully integrated CBR and MHD services as well as two organizations in Nepal and Bangladesh
which were planning integration was undertaken. Interviews and focus groups were used to gather non-
confidential information. The study suggested many benefits of integration and several indicators of
readiness: willingness to work with mentally ill people, a basic understanding of the mental health concept
and mental illness problems, a match of context and strategy between current CBR activities and proposed
MHD activities, stability of basic resources and infrastructure in the organization. A second set of indicators
determined the long-term viability of an integrated CBR-MHD approach: ability to strategize and plan a
mental health programme, ability to network with stakeholders effectively, ability to make use of resources
efficiently. A major finding of the study was the need for training in the practical aspects of integration of
mental health interventions with CBR ([20]).

[26] in their report on a CBR programme that they revisited after 6 years found that only 15% of patents
were continuing to access treatment, that the majority of the CBR programmes they had initiated, such as
the self-help groups comprising members from the local community, self-employment schemes, to a large
extent had not survived beyond 3 years. Multiple reasons were identified as contributing to the non-
sustainability of the effort, primary among them being inadequate knowledge about mental illness, lack of
support from the family and community, and continued dependence on the service provider to provide
solutions. These findings reiterate the point that NGO-led programmes are very difficult to sustain beyond
the funding period unless the programmes are fully integrated into the existing public health and
community systems and a transfer of ownership happens.

Conclusion
While the literature regarding PSR in LAMIC is limited, there is nevertheless a dedicated set of individuals
who are keen evangelists of the concept who are doing their best to convert sceptics into believers. It is
clear that PSR, interwoven with active community participation and public mental health leadership,
socially and culturally relevant community mental healthcare and rehabilitation programmes, can sustain
and develop to meet the growing mental health needs of the community.

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for
the content and writing of the paper.

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~~~~~~~~
By Thara Rangaswamy and John Sujit

Reported by Author; Author

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Registro: 54
Psychotic disorders in urban areas: an overview of the Study on
Low Prevalence Disorders. By: Jablensky, Assen; McGrath, John;
Herrman, Helen; Castle, David; Gureje, Oye; Evans, Mandy; Carr,
Vaughan; Morgan, Vera; Korten, Ailsa; Harvey, Carol. Australian &
New Zealand Journal of Psychiatry. Apr2000, Vol. 34 Issue 2, p221-
 236. 16p. Abstract: Objective: This paper reports on a study
designed within the framework of the National Survey of Mental
Health and Wellbeing to: estimate the prevalence of psychoses in
urban areas of Australia; identify profiles of symptomatology,
impairments and disabilities; collect information on services
received and needed; and explore quality of life issues in a broadly
representative sample of people with psychotic illnesses. Method:
The study was conducted over four areas in the Australian Capital
Territory, Queensland, Victoria and Western Australia, as a two-
phase survey: (i) a census and screening for psychosis of all
individuals who made contacts with mental health services during a
period of 1 month in 1997; and (ii) interviews with a stratified
random sample (n = 980) of the screen-positive individuals (n =
3800) using a standardised instrument. Results: The point
prevalence (1 month) of psychotic disorders in the urban population
aged 18–64 is in the range of 4–7 per 1000 with a weighted mean of
4.7 per 1000. People with psychotic disorders experience high rates
of functional impairments and disability, decreased quality of life,
persistent symptoms, substance-use comorbidity and frequent side
effects of medication. Although the utilisation of hospital-based and
community mental health services, as well as of public and non-
governmental helping agencies, is high, the majority live in extreme
social isolation and adverse socioeconomic circumstances. Among
the many unmet needs, the limited availability of community-based
rehabilitation, supported accommodation and employment
opportunities is particularly prominent. Conclusions: The so-called
‘low-prevalence’ psychotic disorders represent a major and complex
public health problem, associated with heavy personal and social
costs. There is a need for a broad programmatic approach, involving
various sectors of the community, to tackle the multiple dimensions
of clinical disorder, personal... [ABSTRACT FROM AUTHOR] DOI:
10.1080/j.1440-1614.2000.00728.x. (AN: 5215985)
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live&scope=site">Psychotic disorders in urban areas: an overview
of the Study on Low Prevalence Disorders.</A>
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Registro: 55
Psychotic relapse and associated factors among patients attending
health services in Southwest Ethiopia: a cross-sectional
studyFikreyesus, Mahlet; Soboka, Matiwos; Feyissa, Garumma
 Tolu. BMC PSYCHIATRY; OCT 20 2016; 16 (AN
000385883100001)
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live&scope=site">Psychotic relapse and associated factors among
patients attending health services in Southwest Ethiopia: a cross-
sectional study</A>
Base de datos: Social Sciences Citation Index

Registro: 56
Rehabilitation of the emotional problems of brain disorders in
developing countries. By: Judd, Tedd. Neuropsychological
Rehabilitation. Mar2003, Vol. 13 Issue 1/2, p307. 19p. Abstract:
Emotional and behavioural problems of people with brain disorders
are major undertreated problems in developing countries. These
can be addressed by training lay volunteers in community-based
rehabilitation. Training and programme implementation must be
highly sensitive to local conditions. Basic concepts that can be
trained in such conditions include case finding, triage, evaluation
skills, emotional rehabilitation, restoration and compensation
strategies, the continuum of responsibility, the zone of recovery,
scaffolding, adjusting the person-environment fit, awareness of
deficits, setting goals, communicating with others about the
disability, disability rights, support groups, and circles of support.
[ABSTRACT FROM AUTHOR] DOI: 10.1080/09602010244000309.
(AN: 9330696)
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live&scope=site">Rehabilitation of the emotional problems of brain
disorders in developing countries.</A>
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Registro: 57
'Restoring the person's life': a qualitative study to inform
development of care for people with severe mental disorders in rural
EthiopiaMall, S.; Hailemariam, M.; Selamu, M.; Fekadu, A.; Lund,
C.; Patel, V.; Petersen, I.; Hanlon, C.. EPIDEMIOLOGY AND
 PSYCHIATRIC SCIENCES; FEB 2017; 26; 1; p43-p52 (AN
000397086300009)
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live&scope=site">'Restoring the person's life': a qualitative study to
inform development of care for people with severe mental disorders
in rural Ethiopia</A>
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Registro: 58
Social-Cognitive Predictors of Readiness to Use Evidence-Based
Practice. By: Pfaller, Joseph S.; Tu, Wei-Mo; Morrison, Blaise;
Chan, Fong; Owens, Laura; Anderson, Catherine A.; Fitzgerald,
Sandra; Brooks, Jessica; Menz, Fredrick E. Rehabilitation
Counseling Bulletin. Oct2016, Vol. 60 Issue 1, p7-15. 9p. Abstract:
Community-based rehabilitation organizations (CBRO) play an
important role in providing rehabilitation and support services to
individuals with disabilities. Increased utilization of CBROs by state
vocational rehabilitation (VR) agencies requires a better
understanding of how evidence-based practices (EBPs) are used in
CBROs. The aim of the study was to examine the readiness of
CBRO practitioners to implement EBP, based on social-cognitive
predictors of confidence in knowledge and use of EBP, expected
benefits of EBP, and perceived barriers and supports to use EBP. A
total of 187 CBRO practitioners were surveyed using the Evidence-
Based Practice CBRO (EBP-CBRO) survey. Participants were in
moderate agreement that they were ready to implement EBP. They
were moderately confident in their knowledge about EBP, in high
agreement about the expected improvements by using EBP, and
perceived low barriers and moderate supports to implementing EBP.
The social-cognitive predictors accounted for 55% of the variance in
readiness to implement EBP, with knowledge about EBP as the
most significant predictor of readiness to use EBP. Social-cognitive
theory is a useful framework for exploring CBRO practitioners’
attitudes toward and knowledge of EBP. CBRO practitioners are in
moderate agreement about readiness to use EBP. Improving
practitioner confidence to use EBP might be the best means of
increasing utilization. [ABSTRACT FROM AUTHOR] DOI:
10.1177/0034355215591779. (AN: 117794127)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=pbh&AN=117794127&lang=es&site=eds-
live&scope=site">Social-Cognitive Predictors of Readiness to Use
Evidence-Based Practice.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 59
Spinal cord injury rehabilitation and pressure ulcer prevention after
the 2005 South Asian Earthquake: a CBR case study from Pakistan.
By: Chishtie, Jawad; Chishtie, Farrukh; Yoshida, Karen; Balogh,
Robert. Disability & Rehabilitation. Jul2019, Vol. 41 Issue 14,
p1655-1663. 9p. 5 Charts. Abstract: Background: The 2005 South
Asian earthquake led to large-scale injuries and disabilities in
northern Pakistan, which were dealt with using various approaches.
In this regard, a community-based rehabilitation approach was
initiated in the Muzaffarabad district of Pakistan in early 2006,
focused on preventing complications among persons with Spinal
Cord Injury. This case study briefly describes its development, aims
and service provision components, in addition to the distribution of
injuries from the disaster. Pressure ulcer prevention education, its
recall and decrease in prevalence over a year are presented as key
outcomes and illuminate the process of implementing rehabilitation
in this context. Methods: This case study presents findings from a
larger internal program evaluation in 2010–11. The study design
was cross-sectional, to elicit recall of education components and the
resulting prevalence of pressure ulcers over the year, in 33
randomly selected persons with Spinal Cord Injury. Outcomes
included retention of knowledge about pressure ulcer prevention,
practices and reduction in the prevalence of pressure ulcers over
the last year. We also conducted a narrative literature review on the
types of injuries and complications in the Spinal Cord population
from Northern Pakistan. Results: Hospital cohort studies reported
"spine" injuries at 5%, while persons with spinal cord injury were
identified as the most underserved needing rehabilitation services
after the quake. Results from the evaluation of prevention education
revealed that all 33 respondents were trained in detection of
pressure ulcers, while 32 recalled "danger signs" for which they
would seek immediate help. All correctly recalled postural change
timings, however, their actual practices differed. Twenty-seven
respondents (82%) reported no pressure ulcers over the last year.
Conclusion: The decrease in pressure ulcer prevalence over the last
year in persons with spinal cord injury highlights the strengths of the
community-based rehabilitation approach, particularly preventive
education in geographically challenging and highly resource
constrained settings. The research also begins to fill a critical gap in
the present literature as most research is limited to hospital based
interventions from the first year of the 2005 earthquake. Prevention
 education for targeting pressure ulcers can be effective in reducing
incidence of this important complication in persons with spinal cord
injury. Community-based rehabilitation approaches can prove
beneficial in post-disaster settings, especially in resource
constrained settings and difficult hilly terrain. Rehabilitation
programs should consider nutrition interventions to reduce multiple
pressure ulcers, especially in lower middle income countries.
[ABSTRACT FROM AUTHOR] DOI:
10.1080/09638288.2018.1445783. (AN: 136537897)
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live&scope=site">Spinal cord injury rehabilitation and pressure ulcer
prevention after the 2005 South Asian Earthquake: a CBR case
study from Pakistan.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 60
Stigma of persons with disabilities in Afghanistan: Examining the
pathways from stereotyping to mental distressTrani, Jean-Francois;
Ballard, Ellis; Pena, Juan B.. SOCIAL SCIENCE & MEDICINE; MAR
2016; 153; p258-p265 (AN 000372937500030)
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live&scope=site">Stigma of persons with disabilities in Afghanistan:
Examining the pathways from stereotyping to mental distress</A>
Base de datos: Social Sciences Citation Index

Registro: 61
Stories of change: the text analysis of handovers in an Italian
psychiatric residential care homeAccordini, M.; Saita, E.; Irtelli, F.;
Buratti, M.; Savuto, G.. JOURNAL OF PSYCHIATRIC AND MENTAL
HEALTH NURSING; MAY 2017; 24; 4; p232-p242 (AN
000399663400007)
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direct=true&db=edswss&AN=000399663400007&lang=es&site=eds-
live&scope=site">Stories of change: the text analysis of handovers
in an Italian psychiatric residential care home</A>
Base de datos: Social Sciences Citation Index

Registro: 62
Success indicators for integrating mental health interventions with
community-based rehabilitation projectsRaja, Shoba; Boyce,
William F.; Ramani, Sudha; Underhill, Chris. INTERNATIONAL
JOURNAL OF REHABILITATION RESEARCH; DEC 2008; 31; 4;
p284-p292 (AN 000261485300004)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000261485300004&lang=es&site=eds-
live&scope=site">Success indicators for integrating mental health
interventions with community-based rehabilitation projects</A>
Base de datos: Social Sciences Citation Index

Registro: 63
The development of a framework for high-quality, sustainable and
accessible rural private therapy under the Australian National
Disability Insurance Scheme. By: Dew, Angela; Barton, Rebecca;
Ragen, Jo; Bulkeley, Kim; Iljadica, Alexandra; Chedid, Rebecca;
Brentnall, Jennie; Bundy, Anita; Lincoln, Michelle; Gallego, Gisselle;
Veitch, Craig. Disability & Rehabilitation. Dec2016, Vol. 38 Issue 25,
p2491-2503. 13p. 1 Diagram, 2 Charts. Abstract: Purpose:The
Australian National Disability Insurance Scheme (NDIS) will provide
people with individual funding with which to purchase services such
as therapy from private providers. This study developed a
framework to support rural private therapists to meet the anticipated
increase in demand. Method:The study consisted of three stages
utilizing focus groups, interviews and an online expert panel.
Participants included private therapists delivering services in rural
New South Wales (n = 28), disability service users (n = 9) and key
representatives from a range of relevant consumer and service
organizations (n = 16). We conducted a thematic analysis of focus
groups and interview data and developed a draft framework which
was subsequently refined based on feedback from stakeholders.
Results:The framework highlights the need for a ‘rural-proofed’
policy context in which service users, therapists and communities
engage collaboratively in a therapy pathway. This collaborative
engagement is supported by enablers, including networks,
 resources and processes which are influenced by the drivers of
time, cost, opportunity and motivation. Conclusions:The framework
identifies factors that will facilitate delivery of high-quality,
sustainable, individualized private therapy services for people with a
disability in rural Australia under the NDIS and emphasizes the need
to reconceptualize the nature of private therapy service
delivery.Implications for RehabilitationRural private therapists need
upskilling to work with individuals with disability who have individual
funding such as that provided by the Australian National Disability
Insurance Scheme.Therapists working in rural communities need to
consider alternative ways of delivering therapy to individuals with
disability beyond the traditional one-on-one therapy models.Rural
private therapists need support to work collaboratively with
individuals with disability and the local community.Rural private
therapists should harness locally available and broader networks,
resources and processes to meet the needs and goals of individuals
with disability. [ABSTRACT FROM AUTHOR] DOI:
10.3109/09638288.2015.1129452. (AN: 118414211)
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live&scope=site">The development of a framework for high-quality,
sustainable and accessible rural private therapy under the
Australian National Disability Insurance Scheme.</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 64
The Meaning of Community Rehabilitation for Schizophrenia
Patients in IsraelMazor, Uri; Doron, Israel. COMMUNITY MENTAL
HEALTH JOURNAL; JUN 2011; 47; 3; p351-p360 (AN
000290232100011)
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url=http://search.ebscohost.com/login.aspx?
direct=true&db=edswss&AN=000290232100011&lang=es&site=eds-
live&scope=site">The Meaning of Community Rehabilitation for
Schizophrenia Patients in Israel</A>
Base de datos: Social Sciences Citation Index

Registro: 65
 The move towards community-based rehabilitation in industrialised
countries: Are we equipped for the challenge? By: Kendall,
Elizabeth; Muenchberger, Heidi; Catalano, Tara. Disability &
Rehabilitation. 2009, Vol. 31 Issue 26, p2164-2173. 10p. 1 Chart.
Abstract: Background. Recent challenges to health systems in
industrialised countries (e.g., health trends, workforce shortages,
geographical dispersion, changing demographics and the growing
demand for hospital beds) have prompted a rise in popularity of
services loosely labelled community-based rehabilitation (CBR). The
rise of CBR is based on the assumption that these models of
service delivery have the potential to address some of these
challenges by promoting efficient use of community resources.
However, due to the way in which CBR has evolved in industrial
countries, there is considerable ambiguity surrounding the concept,
and even more uncertainty about the methods by which its
implementation can be fostered. Purpose. To explore the CBR in an
industrialised country and the implications of its implementation for
the health workforce, health systems and service delivery. Method.
This article reviews existing literature to explore the concept of CBR
as it is applied in industrialised countries. It examines the possible
implications of adopting CBR into health systems, including the
need for conceptual clarity, a competency frameworks and ongoing
professional development. Conclusion. This article has shown that
for CBR is to become a viable model for the delivery of health
services in industrialised countries, a competency framework is
needed, together with strong leadership to facilitate the translation
of theory into practice. Further, collaboration is required among
practitioners, policy makers, unions, consumers, educators and
professional associations to support this transformation.
[ABSTRACT FROM AUTHOR] DOI: 10.3109/09638280902939734.
(AN: 45088541)
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direct=true&db=pbh&AN=45088541&lang=es&site=eds-
live&scope=site">The move towards community-based
rehabilitation in industrialised countries: Are we equipped for the
challenge?</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 66
The relevance of the International Classification of Functioning,
Disability and Health (ICF) in monitoring and evaluating Community-
based Rehabilitation (CBR). By: Madden, Rosamond H.; Dune,
Tinashe; Lukersmith, Sue; Hartley, Sally; Kuipers, Pim; Gargett,
 Alexandra; Llewellyn, Gwynnyth. Disability & Rehabilitation.
May2014, Vol. 36 Issue 10, p826-837. 12p. 1 Diagram, 10 Charts.
Abstract: Purpose: To examine the relevance of the International
Classification of Functioning, Disability and Health (ICF) to CBR
monitoring and evaluation by investigating the relationship between
the ICF and information in published CBR monitoring and evaluation
reports. Method: A three-stage literature search and analysis
method was employed. Studies were identified via online database
searches for peer-reviewed journal articles, and hand-searching of
CBR network resources, NGO websites and specific journals. From
each study 'information items' were extracted; extraction
consistency among authors was established. Finally, the resulting
information items were coded to ICF domains and categories, with
consensus on coding being achieved. Results: Thirty-six articles
relating to monitoring and evaluating CBR were selected for
analysis. Approximately one third of the 2495 information items
identified in these articles (788 or 32%) related to concepts of
functioning, disability and environment, and could be coded to the
ICF. These information items were spread across the entire ICF
classification with a concentration on Activities and Participation
(49% of the 788 information items) and Environmental Factors
(42%). Conclusions: The ICF is a relevant and potentially useful
framework and classification, providing building blocks for the
systematic recording of information pertaining to functioning and
disability, for CBR monitoring and evaluation. [ABSTRACT FROM
AUTHOR] DOI: 10.3109/09638288.2013.821182. (AN: 96057226)
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direct=true&db=pbh&AN=96057226&lang=es&site=eds-
live&scope=site">The relevance of the International Classification of
Functioning, Disability and Health (ICF) in monitoring and evaluating
Community-based Rehabilitation (CBR).</A>
Base de datos: Psychology and Behavioral Sciences Collection

Registro: 67
The Role of Health Systems Factors in Facilitating Access to
Psychotropic Medicines: A Cross-Sectional Analysis of the WHO-
AIMS in 63 Low- and Middle-Income CountriesMcBain, Ryan;
Norton, Daniel J.; Morris, Jodi; Yasamy, M. Taghi; Betancourt,
Theresa S.. PLOS MEDICINE; JAN 2012; 9; 1 (AN
000300419600014)
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 direct=true&db=edswss&AN=000300419600014&lang=es&site=eds-
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live&scope=site">The Role of Health Systems Factors in Facilitating
Access to Psychotropic Medicines: A Cross-Sectional Analysis of
the WHO-AIMS in 63 Low- and Middle-Income Countries</A>
Base de datos: Social Sciences Citation Index

Registro: 68
The role of occupational therapists in the contexts of a natural
disaster: a scoping reviewJeong, Yunwha; Law, Mary; DeMatteo,
Carol; Stratford, Paul; Kim, Hwan. DISABILITY AND
REHABILITATION; 2016; 38; 16; p1620-p1631 (AN
000377023900009)
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live&scope=site">The role of occupational therapists in the contexts
of a natural disaster: a scoping review</A>
Base de datos: Social Sciences Citation Index