DAFTAR PUSTAKA

Abuqamar, M., Arabiat, D. H., & Holmes, S (2015). Parents' Perceived Satisfaction
of Care, Communication and Environment of the Pediatric Intensive Care
Units at a Tertiary Children's Hospital1,2,3. Journal of Pediatric Nursing
(xx): xxx–xxx.
http://www.sciencedirect.com/science/article/pii/S088259631500408X.

Adams, A., TMannix & Harrington, A. (2012). Nurses’ communication with

families in the intensive care unit – a literature review. British Association
of Critical Care Nurses; doi: 10.1111/nicc.12141

Aji, D.N., Silman, C., Aryudi, C., Cynthia, Centauri, Andalia, D et al (2009).
Faktor-faktor yang berhubungan dengan Kualitas hidup pasien Talasemia
Mayor di Pusat Talasemia Departemen Ilmu Kesehatan Anak RSCM. Sari
Pediatri, Vol. 11, No.2.

Ali, S., Sabih, F., Jehann, S., Anwar, M & Javed, S. (2012). Psychological Distress
and Coping Strategies Among Parents of Beta Thalassemia Major Patients.
Departement of Physiology Islamic International Medical College
Peshawar Road Rawalpindi, Pakistan. 2012 International Conference on
Clean and Green Energy IPCBEE Vol.27.

Aljaryan, J.M.A., (2017). A Review of β-Thalassemia in Saudi Arabian Children.

The Egyptian Journal of Hospital Medicine (Apr. 2017) Vol. 67(1), Page
407- 414. DOI:10.12816/0036655

Alligood, M.R. (2017). Pakar Teori Keperawatan dan Karya Mereka. Editor Edisi
Indonesia Hamid, A.Y & Ibrahim, K, Edisi Indonesia ke-8 Volume 1.
Singapore:Elsevier

Alparslan, O & Yildiz, S (2012). The Effect of Nursing Support Given to The
Siblings and Mothers of Children with Chronic Hematologic-Oncologic
Disease on the Anxiety Levels of the Siblings and Mothers. Hemsirelikte
Arastırma Gelistirme Dergisi. GİSİ
hemarge.org.tr/ckfinder/userfiles/files/2012/2012-vol14-sayi1-264.pdf

Ammad, S. A., Mubeen, S. M., Shah, S. F. H., & Mansoor, S. (2011). Parents’
opinion of quality of life (QOL) in Pakistani thalassaemic children. J Pak
Med Assoc: Vol.61. No. 5.

Ammentorp, J., Rasmussen, A. M., Norgaard, B., Kirketerp, E., & Kofoed, P.
(2007). Electronic questionnaires formeasuring parent satisfaction and as
a basis for quality improvement. International Journal for Quality in Health
Care, 19, 120–124
Angellucci, E., Srivastava, A., & Usai, S. (2014). Guidelines for the Management
of transfusion dependent Thalasemia 3RD Edition. Thalassemia International
Federation.

Arbabisarjou, A., Karimzaei, T & Jamalzaei, A. (2015). The Perception Of

Biological Experience In Patients With Major Thalassemia: A Qualitative
Research. Global Journal Of Health Science; Vol. 7, No. 1.
https://pdfs.semanticscholar.org/d5e6/646868320d62c9423d09fe1fdc0f5e2
257a6.pdf.

Arabiat, D., Alqaissi, N., & Hamdan-Mansour, A. (2011). Children's knowledge of

cancer diagnosis and treatment: Jordanian mothers' perceptions and
satisfaction with the process. International Nursing Review, 58, 443–449.

Arief, Y. S., Ertawati & Laili, D. (2017). Nurse’ Caring Behaviour Improve the
Satisfaction of Patient’s Mother. Jurnal Ners Vol.4 No. 2: 144-148

Arumsari, D. P., Emaliyawati, E & Sriati, A. (2017). Hambatan Komunikasi Efektif

Perawat Dengan Keluarga Pasien Dalam Perspektif.
ejournal.upi.edu/index.php/JPKI/article/download/4745/3304

Ashrafizadeh, H., Adineh, M., Baraz, S & Darvishi, M., (2016). Depression and
Anxiety among Parents of Children with Blood Disease in Ahvaz, South
West of Iran. Int J Pediatr, Vol.4, N.7, Serial No.31, Jul 2016.
ijp.mums.ac.ir/article_7047_295b1c41307a042cb59a290fad1ebeb1.pdf

Aziz, A. R., Mohammed, S. H., & Aburaghif, L. F. (2015). Burden of Caregivers

Care for Children with Thalassemia at Babylon Child and Maternity
Teaching Hospital / Babylon Governorate / Iraq. IOSR Journal of Nursing
and Health Science (IOSR-JNHS) e-ISSN: 2320–1959.p- ISSN: 2320–1940
Volume 4, Issue 6.

Azwar, S. (2010). Sikap manusia: Teori dan pengukurannya. Yogyakarta: pustaka

Pelajar.

Baiee, H. A., Ameer, M. A., Hadi, B. A., Kamel, M & Alaa, H. (2015). Depression
among Parents of Children with Thalassemia in Babylon Province- Iraq
During The Year2014. Medical Journal of Babylon Vol. 12- No. 4: 999 -
1005 , 2015 http://www.medicaljb.com ISSN 2312-6760©2015 University
of Babylon

Bala, J., & Sarin, J., (2014). Empowering Parents of Children with Thalassemia.
International Journal of Nursing Care: Vol 2, No 1. Pages: 22-25.
http://www.i-scholar.in/index.php/ijnc/article/view/52361
Behdani, F., Badiee, Z., Hebrani, P., Moharreri, F., Badiee, A.H., Hajivosugh, N.,
et al (2015). Psychological Aspects in Children and Adolescents With Major
Thalassemia: A Case-Control Study. Iran J Pediatr; 25(3):e322.

Blazevic, I. (2016). Family, Peer and School Influence on Children's Social

Development. World Journal of Education: Vol. 6, No. 2

Borgna-Pignatti & Gamberini, M. R., (2011): Complications of thalassemia major

and their treatment. Expert Review of Hematology, 4:3, 353-366. doi:
10.1586/ehm.11.29. http://www.tandfonline.com/loi/ierr20.

BPS (2014). Upah Minimum Regional/Provinsi (UMR/UMP) per bulan (dalam

rupiah). Diakses melalui dalam
https://www.bps.go.id/linkTableDinamis/view/id/917

Brissot, P. (2014). Guidelines for the Management of transfusion dependent

Thalasemia 3RD Edition. Thalassemia International Federation.

Burnes, David, P.R., Antle, B.J., Wiliams, C.C., & Cook. L. (2008). Mother Raising
Children With Sickle Cell Disease at the Intersection of Race, Gender and
Ilness Stigma. Journal of The Association of Social Worker Abstract.

Caocci, G., Efficace, F., Ciotti, F., Roncarolo, M.G., Vacca, A., Piras, E et al.
(2012). Health related quality of life in Middle Eastern children with beta-
thalassemia. BioMed Central Blood Disorders, 12:6
http://www.biomedcentral.com/1471-2326/12/6

Catherin, T., Alison, M., & Beverly, O. (2009). Support needs of parents of sick
and or preterm infans admitted to a neonatal unit. Neonatal, Pediatric and
Child Health Nursing, 12(2), 12-17.

Children’s Hospital & Research Center Oakland. (2012). Standards of Care

Guidelines for Thalassemia 2012. Hematology/Oncology Department 747
52nd Street Oakland, CA 94609 www.childrenshospitaloakland.org

Clarke, S. A., Skinner, R., Guest, J., Darbyshire, P., Cooper, J., Shah, F et al (2009).
Health-related quality of life and financial impact of caring for a child with
Thalassaemia Major in the UK. Journal compilation: Blackwell Publishing
Ltd

Dadipoor, S., Haghighi, H., Madani, A., Ghanbarnejad, A., Shojaei, F et al (2015).
Investigating the mental health and coping strategies of parents with major
thalassemic children in Bandar Abbas. Journal of Education and Health
Promotion | Vol. 4 | August 2015
Dahlan, M.S. (2014). Statistik Untuk Kedokteran Dan Kesehatan: Deskriptif,
Bivariat, Dilengkapi Aplikasi Menggunakan SPSS, Edisi 6. Jakarta:
Epidemiologi Indonesia.

Davis, K & Gavidia-Payne, S. (2009). The impact of child, family, and professional
support characteristics on the quality of life in families of young children
with disabilities. Journal of Intellectual & Developmental Disability ; 34(2):
153–162.

Dehkordi, A. H., & Heydarnejad, M. S., (2008). Effect of booklet and combined
method on parents’ awareness of children with β-thalassemia major
disorder. J Pak Med Assoc: Vol. 58, No. 9
www.jpma.org.pk/PdfDownload/1484.pdf

Dimiati, H., & Lubis, S.Y. (2014). Gangguan Jantung Pada Anak Penderita
Talasemia Mayor. Jurnal Kedokteran Sylah Kuala: Volume 14 Nomor 3

D’Souza, S. R. B., Karkada, S., Lewis, L. E., Mayya, S & Guddattu, V. (2009).
Relationship between stress, coping and nursing support of parents of
preterm infants admitted to tertiary level neonatal intensive care units of
Karnataka, India: A cross-sectional survey. Journal of Neonatal Nursing
(15). 152-158.
http://www.sciencedirect.com/science/article/pii/S1355184109001239

Dubey, A.P., Parakh, A & Dublish, S., (2008). Current Trends in the Management
of Beta Thalassemia. Indian Journal of Pediatrics, Volume 75.

Effendi, SH., (2017). Thalassemia Overview in West Java Province. Seminar Meet
the thalassemia Expert Optimizing Thalassemia Continuum Care. Faculty
of Medicine Universutas Padjadjaran.

Elewa, A.A.A., & Elkattan, B.A.E.A. (2017). Effect of an Educational Program on

Improving Quality of Nursing Care of Patients with Thalassemia Major as
Regards Blood Transfusion. American Journal of Nursing Research, 2017,
Vol. 5, No. 1, 13-21. http://pubs.sciepub.com/ajnr/5/1/2

Elsayed, L. A., & El-Gawad, S. M. E. A., (2015). Nursing Guidelines for Children
Suffering from Beta Thalassemia. International Journal of Nursing Science:
5(4): 131-135 article.sapub.org/10.5923.j.nursing.20150504.02.html

Epstein, E. G., Arechiga, J., Dancy, M., Simon, J., Wilson, D., et al (2017). An
Integrative Review of Technology to Support Communication With Parents
of Infants in the NICU. JOGNN.
http://dx.doi.org/10.1016/j.jogn.2016.11.019
Faris, S.H., & Nawaim, S.D., (2016). Consumers' Satisfaction with Health Care
provided in thalassemia center. IOSR Journal of Nursing and Health
Science: Volume 5, Issue 1. www.iosrjournals.org DOI: 10.9790/1959-
05137479

Fitria, N., Sriati, A., & Hernawaty, T. (2013). Laporan Pendahuluan Tentang
Masalah Psikososial. Jakarta: Salemba Medika.

Ganello, R., & Origa, R. (2010). Betha Thalassemia. Orphanet Journal of Rare
Disease, 5:11
Gass, S.C., & Curiel, E.R. (2011). Test Anxiety In Relation To Measures Of
Cognitive and Intellectual Functioning.
http://acn.oxfordjournals.org/content/2011/06/01/arclin.acr034.abstract.

Ghafoor, M. B., Leghari, M. S., Mustafa, G., & Naveed, S (2016). Level of
Awareness about Thalassemia among Parents of Thalassaemic Children.
Journal of Rawalpindi Medical College (JRMC);20(3):209-211
www.journalrmc.com/.../14_Level%20of%20Awareness%20about%20Th
alassemia%20..

Ghanizadeh, A., Khajavian, S., & Ashkani, H., (2006). Prevalence of Psychiatric
Disorders, Depression, and Suicidal Behavior in Child and Adolescent With
Thalassemia Major. J Pediatr Hematol Oncol: Volume 28, Number 12

Gharaibeh, H., Amarneh, B. H & Zamzam, S. Z (2009). The psychological burden

of patients with beta thalassemia major in Syria. Pediatrics International:
(51), 630–636

Guha, P., Talukdar, A., De, A., Bhattacharya, R., Pal, S., Et Al (2013). Behavioral
Profile And School Performance Of Thalassaemic Children In Eastern
India. Asian Journal Of harmaceutical And Clinical Research : Vol 6, Issue
2, 2013 Issn - 0974-2441.

Harahap, F, et al. (______). Masa Dewasa. Diakses melalui

http://staffnew.uny.ac.id/upload/198503112008121002/pendidikan/006.+P
erkmb+Dewasa+Dini+PowerPoint+-+Bu+Farida+Harahap+Tim.pdf

Hartley, C.A & Phelps, E.A. (2012). Anxiety and Decision-Making. Biol Psychiatry
72 (2), DOI 10.1016/j.biopsych.2011.12.027.
www.ncbi.nlm.nih.gov/pmc/articles/PMC3864559/pdf/nihms350519.pdf

Hartono. (2015). Statistik Untuk Penelitian. Yogyakarta: Pustaka Pelajar.

Hashemi, A., Banaei-Boroujeni, Kokab, (2012). Prevalence of Major Depressive
and Anxiety Disorders in Hemophilic and Major Beta Thalassemic
Patients. Iranian Journal of Pediatric Hematology Oncology: Vol2. No1.
ijpho.ssu.ac.ir/article-1-54-en.pdf

Hassan, S. M. E., & Azzab, S.S.H.I. (2016). Study of the Health Instructions Effect
on Quality of Life and Psychological Problems among Children with
Thalassemia. International Journal of Studies in Nursing; Vol. 1, No. 1
journal.julypress.com/index.php/ijsn/article/download/92/88

Hastono, S.P. (2013). Statistik Kesehatan. Jakarta: PT Raja Grafinda Persada.

Hastuti, R.P. (2014). Pengaruh Paket Edukasi Talasemia (Pedtal) Terhadap

Kualitas Hidup Anak Talasemia. Jurnal Kesehatan, Volume V, Nomor 2,
Hlm 137-144

Hawari, D. (2009). Psikometri Alat Ukur (Skala) Kesehatan Jiwa. Jakarta: FKUI

Hazlina, Rumaya, J., & Nor, S. (2017). Mediating Role Of Perceived Social Support
On The Relationship Between Stress And Quality Of Life Among Mothers
With Thalassemia Children In Malaysia. International Journal Of Public
Health And Clinical Sciences E-Issn : 2289-7577. Vol. 4:No. 1.
Publichealthmy.Org/Ejournal/Ojs2/Index.Php/Ijphcs/Article/Viewfile/386/
340

Hendarto, A. (2014). Pendekatan Holistik Penyakit Kronik Pada Anak Untuk

Meningkatkan Kualitas Hidup. Pendidikan Kedokteran Berkelanjutann LXVI
fakultas Kedokteran Universitas Indonesia Departemen Ilmu Kesehatan
Anak.

Hockenberry, M.J. & Wilson, D. (2011). Wong’s Nursing Care of Infant and
Children. Canada: Elsevier Mosby

Hockenberry, M.J. & Wilson, D. (2013). Wong’s Essentials of Pediatric Nursing.

Ninth Edition. Elseiver.

Hockenberry, M.J. & Wilson, D. (2015). Nursing Care Of Infants and Children. 10
th Edition. St. Louise Missouri: Elseiver.

Hijmans, C.T., Grootenhuis, M.A., Oosterlaan, J., Last, B.F., Heijboer, H., et Al
(2009). Behavioral And Emotional Problems In Children With Sickle Cell
Disease And Healthy Siblings: Multiple Informants, Multiple Measures.
Pediatric Blood & Cancer: 3(7),1277-1283

Hongally, C., Asha, B., & Reena, S. (2012). Study of behavioral problems in
multi‑transfused thalassemic children. Indian Journal of Psychiatry: 54(4).
IDAI (2016). Mengenal Thalasemia. www.idai.or.id/artikel/seputar-kesehatan-
anak/mengenal-thalasemia

Inamdar, S., Inamdar, M., & Gangrade, A (2015). Stress Level Among Caregivers
Of Thalassemia Patients. National Journal Of Community Medicine
:Volume (6)Issue 4. Njcmindia.Org/Uploads/6-4_579-582.Pdf

Indanah, Krisna, Y., Sabri, L. (2013). Pengetahuan dan Dukungan Sosial

Meningkatkan Self Care Behavior Pada Anak Sekolah Dengan Talasemia
Mayor. Jurnal Keperawatan Indonesia. Volume 15 No. 1 Hal 53-60

Indrayani, A & Santoso, A. (2012). Hubungan Pendidikan Kesehatan Dengan

Kecemasan Orang Tua Pada Anak Hospitalisasi. Jurnal Nursing Studies,
Volume 1, Nomor 1, Halaman 163 – 168

Isaacs, A., (2005). Keperawatan Kesehatan Jiwa & Psikiatrik. Jakarta: EGC

Ismail, A., Campbell, M.J., Ibrahim, H.M., & Jones, G.L. (2006). Health related
quality of life in Malaysian children with thalassemia. Health Qual Life
Outcomes, 4, 39. https://doi.org/10.1186/1477-7525-4-39

James, S. R., dan Ashwill, J. W. (2007). Nursing Care of Children Principles &
Practice. Third Edition. Canada: Elsevier.

Javanbakht, M., Keshtkaran, A., Shabaninejad, H., Karami, H., Zakerinia, M., et
al (2015). Comparison of Blood Transfusion Plus Chelation Therapy and
Bone Marrow Transplantation in Patients with β-Thalassemia: Application
of SF-36, EQ-5D, and Visual Analogue Scale Measures. International
Journal of Health Policy and Management: 4(11), 733–740.
http://ijhpm.com

Jaya, I. K., Sari, D. P., & Zen, N. F., (2015). Gambaran Usia Tulang pada Pasien
Talasemia dengan Perawakan Pendek di Bagian Ilmu Kesehatan Anak
RSUP Dr. Moh Hoesin Palembang. Jurnal Kedokteran Dan Kesehatan,
Volume 2, No. 2 : 217-222

Jenerette, C. M., & Valrie, C. R. (2010). The Influence of Maternal Behaviors

During Childhood on Self-Efficacy in Individuals With Sickle Cell Disease.
Journal of Family Nursing 16(4).
http://www.sagepub.com/journalsPermissions.nav.

Kastel, A., Enskar, K & Bjork, O. (2011). Parents’ views on information in

childhood cancer care. European Journal of Oncology Nursing 15 (2011)
290e295
Khamoushi, F., Ahmadi, S. M., Karami-Matin, B., Ahmadi-Jouybari, T., Mirzaei-
Alavijeh, M., Ataee, M et al (2015). Prevalence and Socio-Demographic
Characteristics Related to Stress, Anxiety, and Depression among Patients
with Major Thalassemia in the Kermanshah County. J. Biol. Today’s
World; 4 (3): 79-84

Khairkar, P., Malhotra, S., & Marwaha, R. (2009). Growing Up With The Families
Of Β-Thalassaemia Major Using An Accelerated Longitudinal Design.
Indian J Med Res 132, Pp 428-437

Khanna, A. K., Prabhakaran, A., Patel, P., Ganjiwale, J. D., & Nimbalkar, S. M.,
(2015). Social, Psychological and Financial Burden on Caregivers of
Children with Chronic Illness: A Cross-sectional Study. Indian J Pediatr.
https://www.ncbi.nlm.nih.gov/pubmed/25976615

Kilicarslan, E ., & Akgun, E. (2013). Information-seeking behaviours and decision-

making process of parents of children with cancer. European Journal of
Oncology Nursing 17: 176-183

Knafl, k, A., Darney, B.G., Gallo, A.M & Angst, D, B. (2010). Parental
Perceptions of the Outcome and Meaning of Normalization. Res Nurs
Health; 33(2): 87–98. doi:10.1002/nur.20367.

Kyle, T & Carman, S (2015). Buku ajar Keperawatan Pediatrik Vol.1. Jakarta:
EGC.

Laura, A. K. (2010). Psikologi Umum – Sebuah Pandangan Apresiatif. Jakarta:

Salemba Medika

Magliyah, A., & Razzak, M. (2015). The Parents' Perception of Nursing Support
in their Neonatal Intensive Care Unit (NICU) Experience. International
Journal of Advanced Computer Science and Applications, Vol. 6, No. 2.

Manuho, E., Warouw, H., & Hamel, R. (2015). Hubungan Beban Kerja Dengan
Kinerja Perawat Dalam Pemberian Asuhan Keperawatan Di Instalasi
Rawat Inap C1 RSUP PROF. DR. R. D. Kandau Manado. ejournal
keperawatan (e-Kep) Volume 3, Nomor 2.

Mashayekhi, F., Jozdani, R. H., Chamak, M. N & Mehni, S. (2016)Caregiver

Burden and Social Support in Mothers with β-Thalassemia Children.
Global Journal of Health Science; Vol. 8, No. 12; ISSN 1916-9736 E-ISSN
1916-9744.
Mazzone, L., Battaglia, L., Andreozzi, F., Romeo, M.A., & Mazzone, D. (2009).
Emotional impact in β-thalassaemia major children following cognitive-
behavioural family therapy and quality of life of caregiving mothers.
Clinical Practice and Epidemiology in Mental Health: 5:5.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2657903/

Mediani, H.S., Nurhidayah, I., Mardhiyah, A &Panigoro R. (2017). Indonesian

Mothers' Needs and Concerns about Having a Thalassemic Child and Its
Treatment: An Exploratory Qualitative Study. International Journal of
Nursing & Care: Volume 1, Issue 2

Meinarno, et al. 2011. Manusia Dalam Kebudayaan Masyarakat. Jakarta:

Salemba Humanika.

Miles, M. S., Carlson, J & Brunssen, S. (1999). The nurse Parent Support Tool.
Journal of Nursing Pediatric, Vol 14, No 1.
http://www.sciencedirect.com/science/article/pii/S0882596399800591

Modell, B., & Darlison, M. (2008). Global epidemiology of haemoglobin disorders

and derived service indicators.
http://www.who.int/bulletin/volumes/86/6/06-036673/en/

Mok, E., & Leung, S.F. (2006). Nurse as Providers of Support for mothers of
premature Infants. Journal of Nursing, 15,726-734

Mostafa, S., & Elaziz, M. A. (2014). Factors Affecting Compliance Plan of

Thalassemic Children and their Mothers in Outpatient Clinic at Zagazig
University Hospitals. Journal of Biology, Agriculture and Healthcare:
Vol.4, No.3
www.iiste.org/Journals/index.php/JBAH/article/download/10978/11279

Muazzam, A., & Javed, S. (2013). Predictors of Caregiver’s Burden: Interplay of

Physical and Emotional Health and Perceived Hope in Children with
Thalassemia and Hemophilia. Pakistan Journal of Social and Clinical
Psychology , Vol. 11, No.2, 36-42

Najafi, K., Borhani, Rabari, D., & Sabzevari. (2011). The Effect of Family-
Centered Empowerment Model on the Mothers’ Knowledge and Attitudes
about Thalassemia Disorder. Iranian Journal of Pediatric Hematology
oncology Vol 1. No 3

Naviati, E. (2011). Hubungan dukungan perawat dengan tingkat kecemasan orang

tua di ruang rawat inap anak RSAB Harapan Kita Jakarta. Tesis.
lontar.ui.ac.id/file?file=digital/20280676-T%20Elsa%20Naviati.pdf –
Noor, J. (2017). Metodologi Penelitian: Skripsi, Tesis, Disertasi & Karya Ilmiah.
Jakarta: Kencana.

Notoatmodjo, S. (2012). Metodologi Penelitian Kesehatan. Jakarta: Rineka Cipta.

Nursalam. (2009). Konsep dan Penerapan Metodologi Penelitian Ilmu

Keperawatan. Jakarta: Salemba Medika.

Nursalam. (2011). Proses dan Dokumentasi Keperawatan. Jakarta: Salemba

Medika

Obaid, K. A. (2014). Psychological Problems Associated With Thalassemia In

Diyala Province, Iraq. The Swedish Journal Of Scientific Research (Sjsr).
ISSN: 2001-9211. Volume . Issue 3.

Oetelaar, V.D., Rhenen, V., Stellato, R.K & Grolman, W. (2016). Balancing
nurses’ workload in hospital wards: study protocol of developing a method
to manage workload. BMJ Open: e012148. doi:10.1136/bmjopen-2016-
012148

Oshvandi, K., Zamanzadeh, V., Ahmadi, F., Fathi-Azar, E., Anthony, D et al

(2008). Barriers to Nursing Job Motivation. Research Journal of Biological
Sciences 3 (4): 426-434, 2008 ISSN: 1815-8846 © Medwell Journals

Pagnamenta, R. and Benger, J. (2008). Factors influencing parent sat-isfaction in

a children’s emergency department: Prospective questionnaire-based
study. Emergency Medicine Journal, 25 (7). pp. 417-419. ISSN 1472-0205
Available from: http://eprints.uwe.ac.uk/5248.

Park, J., Wood, J., Bondi, C., Del Arco, A., & Moghaddam, B. (2016). Anxiety
Evokes Hypofrontality and Disrupts Rule-Relevant Encoding by
Dorsomedial Prefrontal Cortex Neurons. Journal of Neuroscience, 36 (11)
3322-3335. DOI 10.1523/Jneurosci.4250-15.2016.
www.jneurosci.org/content/36/11/3322

Paria, P., Halder, R.C., Nayek, K., Mukhopadhyay, D., & Ghosh, S. (2016).
Psychopathology of the Children Suffering from Chronic Illnesses due to
Thalassemia Major and Nephrotic Syndrome. Scholars Journal of Applied
Medical Sciences (SJAMS): 4(4C):1291-1296. www.saspublisher.com

Permono, B., & Ugrasena, I.D.G. (2012). Buku Ajar Hematologi Onkologi Anak.
Cetakan Keempat. Jakarta: Ikatan Dokter Anak Indonesia.

Peterson, S.J., & Bredow, T.S. (2009). Middle Range Theories Application to
Nursing Research. Second Edition. Philadelphia: Wolter Kluwer.
Lippincott Williams & Wilkins.
Prasetyono, D.S. (2007). Metode Mengatasi Cemas Dan Depresi. Yogyakarta:
ORYZA.

Polit, D.F., & Beck, C.T., (2014). Essentials Of Nursing Research: Appraising
Evidence For Nursing Practice, 8th edition. Philadelpia: Lippincott William
& Wilkins.

Porter, J., & Viprakasit, V. (2014). Guidelines for the Management of transfusion
dependent Thalasemia 3RD Edition. Thalassemia International Federation.

Pouraboli, B., Abedi, H. A., Abbaszadeh, A & Kazemi, M. (2014). Living in a misty
marsh: A qualitative study on the experiences of self-care suffering of
patients with thalassemia. Iranian Journal of Nursing and Midwifery
Research | Special Issue on Health and Wellbeing: Vol. 19, Issue 7

Pouraboli, B., Abedi, H. A., Abbaszadeh, A & Kazemi, M. (2017). Self-care in

Patient with Major Thalassemia: A Grounded Theory. Journal of Caring
Sciences: 6(2), 127-139
journals.tbzmed.ac.ir/JCS/GetFile/JCS_4049_20160310224916

Pouraboli, B., Abedi, H. A., Abbaszadeh, A & Kazemi, M. (2017a). The Burden of
Care: Experiences of Parents of Children with Thalassemia. Journal of
Nursing and Care: Volume 6. Issue 2.1000389

Putri, D. M., Oenzil, F., & Efrida. (2015). Gambaran Status Gizi Anak Talasemia
β Mayor di RSUP Dr. M. Djamil Padang. Jurnal Kesehatan Andalas; 4(3).
http://jurnal.fk.unand.ac.id

Rachmaniah, D., (2012). Pengaruh Psikoedukasi Terhadap Kecemasan Dan

Koping Keluarga dalam Merawat Anak dengan Talasemia Mayor di RSU
Kabupaten Tangerang Banten. Tesis. Fakultas Ilmu Keperawatan Program
Studi Magister Keperawatan Kekhususan Keperawatan Anak. Universitas
Indonesia Depok.

Rajput, A. H., Nadeem, F., & Kumar, V. (2015). Depression, Anxiety and Stress
among Primary Caregivers of Thalassemia Patients in Hyderabad. Annals
of Psychophysiology: Volume 2. www.aeirc-edu.com

Rekam Medis RS Garut. (2017). Data Penderita Talasemia Mayor RS Garut 2017.
Bagian Rekan Medis RS Garut.

Renylda, R. (2018). Kecemasan Orang tua Pada Anak Dengan Thalasemia Di Poli
Anak Rumah Sakit Umum Daerah H.Abdul Manap Kota Jambi Tahun 2015.
Jurnal Ilmiah Universitas Batanghari jambi Vol. 18 No.1
Retaningsih, D., & Etikasari, E. (2016). Hubungan Komunikasi Perawat Dengan
Tingkat Kecemasan Keluarga Pasien Di Unit Perawatan Kritis. Jurnal
Keperawatan Soedirman (The Soedirman Journal of Nursing), Volume 11,
No.1

Robinson, L. & Bawden, D. (2011). Brian Vickery and the foundations of

information science. Paper presented at the ISKO UK 2011, Facets of
Knowledge Organisation: a tribute to Professor Brian Vickery, 4 - 5 Jul
2011, University College London, London, UK.
http://openaccess.city.ac.uk/3156/

Roszell, S., Joones, C. B & Lynn, M. (2009). Call Bell Requests, Call Bell Response
Time, and Patient Satisfaction. J Nurs Care Qual Vol. 24, No. 1, pp. 69–75.

Rosland, A., Heisler, M., Janevic, M., Connell, C., Langa, K. M (2013). Current
and Potential Support for Chronic Disease Management in the United
States: The Perspective of Family and Friends of Chronically Ill Adults.
Families Systemes, Health: 31(2), 119
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3762580/

Saldanha, S. J. (2013). Stress and Coping among Parents of Children Having

Thalassemia. International Journal of Science and Research : 2319-7064.
www.ijsr.net/archive/v4i7/SUB156456.pdf.

Saliba, A.N., Harb, A.R., & Taher, A.T. (2015). Iron chelation therapy in
transfusiondependent thalassemia patients:current strategies and future
directions. J Blood Med: 6; 197-209.

Salmani, N., Abbaszadeh, A., Rasouli, M & Hasanvand, S. (2015). The Process of
Satisfaction with Nursing Care in Parents of Hospitalized Children: A
Grounded Theory Study. Int J Pediatr, Vol.3, N.6-1, Serial No.23

Saini, A., Chandra, J., Goswami, U., Singh, V., Dutta, A. K. (2007). Case Control
Study Of Psychosocial Morbidity In _ Thalassemia Major. The Journal Of
Pediatrics . 01.025
Http://Www.Sciencedirect.Com/Science/Article/Pii/S002234760700100x.

Sananreangsak, S., Lapvongwatana, P., Virutsetazin, K., Vatanasomboo, P., &

Gaylord, N. (2012). Predictors Of Family Management Behavior For
Children With Thalassemia. Southeast Asian J Trop Med Public Health:
Vol 43 No. 1

Sannino, P., Gianni, M.L., Bon, G.D., Fontana, C., Picciolini, O et al (2016).
Support To Mothers Of Premature Babies Using NIDCAP Method: A Non-
Randomized Controlled Trial. Early Human Development 95. 15–20
Sanjari, M., Shirazi, F., Heidari, S., Salemi, S., Rahmani, M., Shoghi, M. (2009).
Nursing Support For Parents Of Hospitalized Children. Issues in
Comprehensive Pediatric Nursing, 32:120–130,
https://www.researchgate.net/publication/51712598_Nursing_Support_for
_Parents_of_Hospitalized_Children [Diakses 21 Jul 2017].

Sanctis, V.D., Skordis, N., & Soliman, A.T. (2014). Guidelines for the Management
of transfusion dependent Thalasemia 3RD Edition. Thalassemia International
Federation.

Santosa, P.W., & Hidayat, A. (2014). Riset Terapan Teori Dan Aplikasi. PT
Globalstat Solusi Utama: Jakarta.

Sapountzi-Krepia, D., Roupa, Z., Gourni, M., Mastorakou,F., Vojiatzi, E.,

Kouyioumtzi, A et al (2006). A Qualitative Study on the Experiences of
Mothers Caring for Their Children With Thalassemia in Athens, Greece.
Journal of Pedriatic Nursing: Vol 21, No 2
http://www.sciencedirect.com/science/article/pii/S0882596305002587.

Sarajarvi, A., & Haapamaki, M.L. (2006). Emotional And Informational Support
For Families During Their Child’s Illness. International Nursing Review:
volume 53;issue 3. https://doi.org/10.1111/j.1466-7657.2006.00479.x

Saryono. (2010). Kumpulan Instrumen Penelitian Kesehatan. Yogyakarta: Mulia

Medika.

Sausar, R., & Zehra, S. Y. (2018). Stress, Anxiety and Depression in Mothers of
Children with Beta Thalassemia. Departemen Of Psychology and Applied
Psychologi. https://www.researchgate.net/publication/324771878

Scott et al. (2010). Anxiety Responses of Parents During and After the
hospitalization of Their 5-to 11-year-old children. Psychology Media:40(9);
1495-505.

Setiadai. (2013). Konsep dan Prakti Penulisan Riset Keperawatan Edisi 2.

Yogyakarta: Graha Ilmu.

Shahraki-vahed, A., Mohammadreza., Firouzkouhi., Abdolghani.,

Abdollahimohammad et al. (2017). Lived experiences of Iranian parents of
beta-thalassemia children. Journal of Multidisciplinary Healthcare: 10;
243-251

Shaligram, D., Girimaji, C., & Chaturvedi, S. K. (2007). Quality of Life Issues in
Caregivers of Youngsters with Thalassemia. Indian Journal of Pediatrics,
Volume 74. https://link.springer.com/article/10.1007/s12098-007-0043-9
Shanmugam, V., & Ramachandra (2015). Stress factors among caregivers of
children with Thalassemia. Manipal Journal of Nursing and Health
Sciences:Volume 1, Issue 1.

Shosha, G. M. A. (2014). Needs and Concerns of Jordanian Mothers with

Thalassemic Children: A Qualitative Study. Journal of American Science:
10(1) www.jofamericanscience.org/journals/am-
sci/.../004_22591am1001_11_16.pdf

Simeone, S., Pucciarelli, G., Perrone, M., Rea, T., Gargiulo, G et al (2017).
Comparative Analysis: Implementation of a Pre-operative Educational
Intervention to Decrease Anxiety Among Parents of ChildrenWith
Congenital Heart Disease. Journal of Pediatric Nursing xxx (2017) xxx–
xxx http://dx.doi.org/10.1016/j.pedn.2017.01.008

Stuart, G.W. (2014). Buku Saku Keperawatan Jiwa Edisi 5. Jakarta: EGC

Sugiyono. (2016). Metode Penelitian Kuantitatif, kualitatif Dan R & D. Bandung:

Alfabeta.

Supriyadi. (2014). Statistik Kesehatan. Jakarta: Salemba Medika

Suryani, S. (2016). Mencegah Plagiarism: Ilmu dan Seni Melakukan Literatur

Reviw. Unpad Press: Bandung.

Taher, A., & Tyan, P.I. (2014). Guidelines for the Management of transfusion
dependent Thalasemia 3RD Edition. Thalassemia International Federation.

Tandberg, B.S., Sandto, H.P., Vardal, M & Ronnestad, A. (2013). Parents of

preterm evaluation of stress and nursing support. Journal of Neonatal
Nursing (19) 317e326
http://www.sciencedirect.com/science/article/pii/S1355184113000094

Thavorncharoensap, M., Torcharus, K., Nuchprayoon, I., Riewpaiboon, A.,

Indaratna, K., Ubol, B.O (2010). Factors Affecting Health-Related Quality
Of Life In Thai Children With Thalassemia. Bio Med Central Hematology.

Trachtenberg, F., Vichinsky, E., Haines, D., Pakbaz, Z., Mednick, L ., et al. (2011).
Iron Chelation Adherence to Deferoxamine and Deferasirox in
Thalassemia. Published in final edited form as: Am J Hematol; 86(5): 433–
436. doi:10.1002/ajh.21993

Trompeter, S., & Cohen, A. (2014). Guidelines for the Management of transfusion
dependent Thalasemia 3RD Edition. Thalassemia International Federation.
Turner, J., Clavarino, A., Yates, P., Hargraves, M., Connors, V., et al (2008).
Enhancing the supportive care of parents with advanced cancer:
Development of a self-directed educational manual. european journal of
cancer (44) 1625 –1631. www.ejconline.com.

Umansky, J., & Rantanen, E. (2016). Workload In Nursing. Proceedings of the

Human Factors and Ergonomics Society 2016 Annual Meeting.
https://doi.org/10.1177/1541931213601127

Undang-Undang Republik Indonesia Nomor 20 Tahun 2003 Tentang Sistem

Pendidikan Nasional. Diakses melalui
http://kelembagaan.ristekdikti.go.id/wp-
content/uploads/2016/08/UU_no_20_th_2003.pdf.

Valizadeh, L., Zamanzadeh, V., Akbarbegloo, M., & Sayadi, L. (2012). Importance
and Availability of Nursing Support for Mothers in NICU: A Comparison of
Opinions of Iranian Mothers and Nurses. Iran J Pediatr; Vol 22 (No 2), Pp:
191-196

Viprakasit, V., & Origa, R. (2014). Guidelines for the Management of transfusion
dependent Thalasemia 3RD Edition. Thalassemia International Federation.

Wahab, J. A., Naznin, M., Nora, M. Z., Suzanah, A. R., Zulaiha, M., Faszrul, A et
al. (2011). Thalassaemia: A Study on The Perception of Patients and Family
Members. Med J Malaysia: (66) No 4 www.e-
mjm.org/2011/v66n4/Thalassaemia.pdf

Walker, M., & Wood, J. (2014). Guidelines for the Management of transfusion
dependent Thalasemia 3RD Edition. Thalassemia International Federation.

Wilkonson, M.J. (2007). Nursing Diagnosis Handbokk With NIC Intervention and
NOC Outcomes. New Jersey: Prentice Hall.

WHO. (2011). Sickle-cell disease and other haemoglobin disorders.

https://www.news-medical.net/health/Thalassemia-Prevalence.aspx

Wong, D.L. Hickenberry, M. Wilson, D. Winkelstein, M.L. Schwartz, P (2009).

Buku Ajar Keperawatan Pediatrik. Volume 2. Jakarta: EGC.

Yanitawati, Mardhiyah, A., & Widianti, E. (2017). Hubungan Perilaku Sakit Dalam
Aspek Psikososial Dengan Kualitas Hidup Remaja Thalasemia. Jurnal
Keperawatan BSI, Vol.5 No.1

Yamashita, R.C., Medinick, L.L., & Haines, D. (2014). Guidelines For The
Management Of Transfusion Dependent Thalassemia 3rd Edition.
Thalassemia International Federation.
Yayasan Thalasemia Indonesia. (2016). Data Penyandang thalasemia di Indonesia.
Diunduh dari Biro komunikasi dan pelayanan Masyarakat, Kemenkes RI.
www.depkes.go.id.

Yengil, E., Acipayam, C., Kokacya, M. H., Kurhan, F., Oktay, G., Ozer, C (2014).
Anxiety, depression and quality of life in patients with beta thalassemia
major and their caregivers. Int J Clin Exp Med;7(8):2165-2172.
https://www.ncbi.nlm.nih.gov/pubmed/25232402