DAFTAR PUSTAKA

American Academy of Pediatrics. (2012). Patient and family-

centered care and the pediatrician’s role.
Pediatrics.www.pediatrics.org/cgi/doi/10.1542/peds.2011-
3084 doi:10.1542/peds.2011-3084

American Cancer Society. (2016). Leukemia in Children. Diakses melalui

https://www.cancer.org/cancer/leukemia-in-children.html

Badan Pusat Statistik. (2016). Upah Minimum Regional/Provinsi (UMR/UMP)

dan rata-rata Nasional per tahun (Dalam Rupiah) 1997-2016. Diakses
melalui https://www.bps.go.id/linkTableDinamis/view/id/917

Ball, J. W., & Blinder, R. C. (2003). Pediatric Nursing Caring for Children. 3th
edition. New Jersey: Pearson Education, Inc

Bigakle, K. L. (2011). Parenting a Chronically Ill Child: Social Support, Coping,

Family Hardiness and Maternal Stress. Master’s Theses. University of
Suthern Mississipi.

Björk, M., Nordström, B., Wiebe, T., & Hallström, I. (2011). Returning to a
changed ordinary life–families' lived experience after completing a child's
cancer treatment. European Journal of Cancer Care, 20(2), 163-169.

Björk, M., Nordström, B., & Hallström, I. (2006). Needs of young children with
cancer during their initial hospitalization: an observational study. Journal of
Pediatric Oncology Nursing, 23(4), 210-219.

Björk, M., Wiebe, T., & Hallström, I. (2009). An everyday struggle—Swedish

families' lived experiences during a child's cancer treatment. Journal of
pediatric nursing, 24(5), 423-432.

Barton, C., Sulaiman, N., Clarke, D., & Abramson, M. (2005). Experiences of
Australian parents caring for children with asthma: It gets easier. Chronic
Illness, 1(4), 303-314.

Bowden, V. R & Greenberg, C. S. (2010). Children and Their Families. Second

Edition. China: Wolters Kluwer Lippincott William & Wilkins

Bulechek,G. M., Butcher, H. K., Dochterman, J. M & Wagner, C. (2013). Nursing

Intervention Classification (NIC) 6th edition. Saint louise Missouri:
Elsevier.
Cousino, M. K., & Hazen, R. A. (2013). Parenting stress among caregivers of
children with chronic illness: a systematic review. Journal of pediatric
psychology, 38(8), 809-828.

Crespo, C., Santos, S., Tavares, A., & Salvador, Á. (2016). “Care that matters”:
Family-centered care, caregiving burden, and adaptation in parents of
children with cancer. Families, Systems, & Health, 34(1), 31.

Creswell, P. D., Wisk, L. E., Litzelman, K., Allchin, A., & Witt, W. P. (2014).
Parental depressive symptoms and childhood cancer: the importance of
financial difficulties. Supportive care in cancer, 22(2), 503-511.

Crosier, T., Butterworth, P., & Rodgers, B. (2007). Mental health problems among
single and partnered mothers. Social psychiatry and psychiatric
epidemiology, 42(1), 6-13.

Dahlan, S. M. (2012). Statistik untuk Kedokteran dan Kesehatan: Deskriptiv,

Bivariat dan Multivariat, Dilengkapi Aplikasi dengan Menggunakan SPSS.
Jakarta: Salemba Medika

Deatrick, J. A., Knafl, K. A., & Murphy‐Moore, C. (1999). Clarifying the concept
of normalization. Image: The Journal of Nursing Scholarship, 31(3), 209-
214.

Deatrick, J. A., Thibodeaux, A. G., Mooney, K., Schmus, C., Pollack, R., & Davey,
B. H. (2006). Family management style framework: A new tool with
potential to assess families who have children with brain tumors. Journal of
Pediatric Oncology Nursing, 23(1), 19-27.

Durualp, E., & Altay, N. (2012). A comparison of emotional indicators and

depressive symptom levels of school-age children with and without
cancer. Journal of Pediatric Oncology Nursing, 29(4), 232-239.

Earle, E. A., Clarke, S. A., Eiser, C., & Sheppard, L. (2007). ‘Building a new
normality’: mothers’ experiences of caring for a child with acute
lymphoblastic leukaemia. Child: care, health and development, 33(2), 155-
160.

Eckshtain, D., Ellis, D. A., Kolmodin, K., & Naar-King, S. (2009). The effects of
parental depression and parenting practices on depressive symptoms and
metabolic control in urban youth with insulin dependent diabetes. Journal
of Pediatric Psychology, 35(4), 426-435.

Emiliani, F., Bertocchi, S., Potì, S., & Palareti, L. (2011). Process of normalization
in families with children affected by hemophilia. Qualitative Health
Research, 21(12), 1667-1678.
Fletcher, P. C. (2010). My child has cancer: the cost of mother’s experience of
having a child with cancer. Issues in Comprehensive Pediatric Nursing,
33(3), 164–184.

Fletcher, P. C., Schneider, M. A., & Harry, R. J. (2010). How do I cope? Factors
affecting mothers’ abilities to cope with pediatric cancer. Journal of
Pediatric Oncology Nursing, 27(5), 285-298.

Fluchel, M. N., Kirchhoff, A. C., Bodson, J., Sweeney, C., Edwards, S. L., Ding,
Q., ... & Kinney, A. Y. (2014). Geography and the burden of care in pediatric
cancers. Pediatric blood & cancer, 61(11), 1918-1924.

Gage-Bouchard, E. A., Devine, K. A., & Heckler, C. E. (2013). The relationship

between socio-demographic characteristics, family environment, and
caregiver coping in families of children with cancer. Journal of clinical
psychology in medical settings, 20(4), 478-487.

Gannoni, A. F., & Shute, R. H. (2010). Parental and child perspectives on

adaptation to childhood chronic illness: A qualitative study. Clinical Child
Psychology and Psychiatry, 15(1), 39-53.

Gibson-Young, L., Turner-Hensen, A., Gerald, L. B., Vence, D. E., & Lozan, D.
(2015). The relationships amongs family management behaviours and
atshma morbidity in maternal caregiver of children with atshma. Journal of
Family Nursing, 20(4) 442-461

Grineski, S. (2008). Coping with asthma in the central city: parental experiences
with children's health care. Journal of health care for the poor and
underserved, 19(1), 227-236.

Handian, I. F. (2015). Peran Orang Tua dalam Merawat Anak dengan Leukemia
Limfoblastik Akut (LLA). Tesis. Universitas Gajah Mada

Handian, F. I., Widjayanto, H. P., & Sumarni, D. W. (2017). Motivasi, hambatan

dan strategi orang tua keluarga miskin dalam merawat anak dengan
leukemia limfoblastik akut. Care: Jurnal Ilmiah Ilmu Kesehatan, 5(1), 77-
91.

Harrington, A. D., Kimball, T. G., & Bean, R. A. (2009). Families and childhood
cancer: An exploration of the observations of a pediatric oncology treatment
team. Families, Systems, & Health, 27(1), 16.

Hastono, S. P. (2013). Analisis Data Kesehatan. Jakarta: Fakultas Kesehatan

Masyarakat Universitas Indonesia
Hildenbrand, A. K., Clawson, K. J., Alderfer, M. A., & Marsac, M. L. (2011).
Coping with pediatric cancer: strategies employed by children and their
parents to manage cancer-related stressors during treatment. Journal of
Pediatric Oncology Nursing, 28(6), 344-354.

Hines, A. (2011). Parental Perceptions of Family Management Styles in Families

with a Child with Asthma. Dissertation. Faculty of The Graduate School at
The University of North Carolina at Greensboro

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

Hockenberry, M.J & Wilson, D. (2013). Essential of Pediatric Nursing. 9th Edition.
St. Louise Missouri : Elsevier

Hoppe, M. (2016). Perceived Social Support of Children with Severe Chronic

Physical Health Conditions: A Systematic Literature Review. Masters
Teses. School of Education and Communicayion (HLK) Jönköping
University

Hullmann, S. E., Wolfe-Christensen, C., Ryan, J. L., Fedele, D. A., Rambo, P. L.,
Chaney, J. M., & Mullins, L. L. (2010). Parental overprotection, perceived
child vulnerability, and parenting stress: a cross-illness comparison. Journal
of clinical psychology in medical settings, 17(4), 357-365.

Ikatan Dokter Anak Indonesia (IDAI). (2017). Mengenal leukemia pada anak.
http://www.idai.or.id/artikel/seputar-kesehatan-anak/mengenal-leukemia-
pada-anak

Kaakinen, J. W., Duff, V. G., Coehlo, D. P & Hanson, S. M. H. (2010). Family

Health Nursing. 4th Edition. Philadelphia: F. A. Davis Company.

Kementerian Kesehatan RI (2015). Situasi Penyakit Kanker. Jakarta : Pusat Data

dan Informasi Kementerian Kesehatan RI

Kementerian Kesehatan RI. (2015). Buletin Jendela dan Informasi Kesehatan :

Situasi Penyakit Kanker. Jakarta : Kementerian Kesehatan RI.

Kementerian Kesehatan RI (2018). Inilah 6 Jenis Kanker yang Rentan Terjadi pada
Anak. http://www.depkes.go.id/article/view/18021600001/inilah-6-jenis-
kanker-yang-rentan-terjadi-pada-anak.html.
Kim, D. H., & Im, Y. J. (2015). The influence of family management style on
psychosocial problems of childhood cancer survivors in Korea. European
Journal of Oncology Nursing, 19(2), 107-112.

Kisić, T., Konstantinidis, N., Kolarović, J., & Kaćanski, N. (2012). Importance of
psychological support for families of children with cancer. Medicinski
pregled, 65(5-6), 223-227.

Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O'Donnell, M.,
... & Sung, L. (2008). Impact of caring for a child with cancer on parents’
health-related quality of life. Journal of clinical oncology, 26(36), 5884-
5889.

Klassen, A., Raina, P., Reineking, S., Dix, D., Pritchard, S., & O’Donnell, M.
(2007). Developing a literature base to understand the caregiving experience
of parents of children with cancer: a systematic review of factors related to
parental health and well-being. Supportive Care in Cancer, 15(7), 807-818.

Klassen, A. F., Raina, P., McIntosh, C., Sung, L., Klaassen, R. J., O'donnell, M., ...
& Dix, D. (2011). Parents of children with cancer: Which factors explain
differences in health‐related quality of life. International Journal of
Cancer, 129(5), 1190-1198.

Knafl, K, et al. (2017). Family Management Measure (FaMM). Diakses melalui

https://nursing.unc.edu/research/office-of-research-support-and-
consultation/family-management-measure/

Knafl, K. A., Darney, B. G., Gallo, A. M., & Angst, D. B. (2010). Parental
perceptions of the outcome and meaning of normalization. Research in
nursing & health, 33(2), 87-98.

Knafl, K. A., & Deatrick, J. A. (2002). The challenge of normalization for families
of children with chronic conditions. Pediatric Nursing, 28(1), 49.

Knafl, K. A., & Deatrick, J. A. (2006). Family management style and the challenge
of moving from conceptualization to measurement. Journal of Pediatric
Oncology Nursing, 23(1), 12-18.

Knafl, K., Deatrick, J. A., & Gallo, A. M. (2008). The interplay of concepts, data,
and methods in the development of the family management style
framework. Journal of Family Nursing, 14(4), 412-428.

Knafl, K., Deatrick, J. A., Gallo, A., Dixon, J., Grey, M., Knafl, G., & O’malley, J.
(2011). Assessment of the psychometric properties of the family
management measure. Journal of Pediatric Psychology, 36(5), 494-505.
Knafl, K. A., Deatrick, J. A., & Havill, N. L. (2012). Continued development of the
family management style framework. Journal of Family Nursing, 18(1), 11-
34.

Knafl, K. A., Deatrick, J. A., Knafl, G. J., Gallo, A. M., Grey, M., & Dixon, J.
(2013). Patterns of family management of childhood chronic conditions and
their relationship to child and family functioning. Journal of Pediatric
Nursing, 28(6), 523-535.

Kyle, C. A & Carman, S. (2015). Buku Ajar Keperawatan Pediatri Edisi 2 Vol. 1.
Jakarta: EGC

Kyle, T. (2008). Essentials of Pediatric Nursing. China: Wolter Kluwer

Health/Lippincot William & Wilkins.

Landier, W., Armenian, S & Bhatia, S. (2015). Late effects of chilhood cancer and
its treatment. Pediatric Clin N Am 62; 275-300

Lee, A., & Rempel, G. R. (2011). Parenting children with hypoplastic left heart
syndrome: finding a balance. Journal for Specialists in Pediatric
Nursing, 16(3), 179-189.
Li, H. C. W., Chung, O. K. J., & Chiu, S. Y. (2010). The impact of cancer on
children's physical, emotional, and psychosocial well-being. Cancer
Nursing, 33(1), 47-54.

Limburg, H., Shaw, A. K., & McBride, M. L. (2008). Impact of childhood cancer
on parental employment and sources of income: a Canadian pilot
study. Pediatric Blood & Cancer, 51(1), 93-98.

Litzelman, K., Catrine, K., Gangnon, R., & Witt, W. P. (2011). Quality of life
among parents of children with cancer or brain tumors: the impact of child
characteristics and parental psychosocial factors. Quality of life
Research, 20(8), 1261-1269.

Lugo-Gill, J & Tamis-LeMonda, C. (2008). Family Resouce and Parenting Quality:

Links to Children’s Cognitive Development Across the Firs 3 Years. Child
Development, 79(4), 1065-1085.

MacDonald, H. L., & Gibson, C. H. (2010). Parenting children requiring complex

care at home: re‐visiting normalisation and stigma. Journal of Nursing and
Healthcare of Chronic Illness, 2(3), 241-250.

Maddi, S. R., Harvey, R. H., Khoshaba, D. M., Lu, J. L., Persico, M., & Brow, M.
(2006). The personality construct of hardiness, III: Relationships with
repression, innovativeness, authoritarianism, and performance. Journal of
personality, 74(2), 575-598.
Marcdante, K. J., Kliegman, R. M., Jenson, H. B & Bherman, R. E. (2011). Nelson
Essential of pediatric (6th ed). Singapore: Elsevier

McCaffrey, C. N. (2006). Major stressors and their effects on the well-being of

children with cancer. Journal of Pediatric Nursing, 21(1), 59-66.

McGrath, P., Paton, M. A., & Huff, N. (2005). Beginning treatment for pediatric
acute myeloid leukemia: The family connection. Issues in Comprehensive
Pediatric Nursing, 28(2), 97-114.

Moorhead, S., Swanson, S., Jhonson, M & Maas, M. (2018). Nursing Outcame
Classiffication (NOC). St. Louiss, Missouri: Elsevier

Morse, J. M., Wilson, S., & Penrod, J. (2000). Mothers and their disabled children:
refining the concept of normalization. Health Care for Women
International, 21(8), 659-676.

Mullins, L. L., Wolfe-Christensen, C., Chaney, J. M., Elkin, T. D., Wiener, L.,
Hullmann, S. E., ... & Junghans, A. (2010). The relationship between single-
parent status and parenting capacities in mothers of youth with chronic
health conditions: The mediating role of income. Journal of Pediatric
Psychology, 36(3), 249-257.

Murray, C., Kelly-Soderholm, E. L & Murray, T. L. (2007). Strengths, challenges

and relational process in family of children with congenital upper limb
differences: A qualitative study. Families, System and Health, 20(3), 276-
292

Nikfarid, L., Rassouli, M., Borimnejad, L., & Alavimajd, H. (2017). Experience of
chronic sorrow in mothers of children with cancer: A phenomenological study.
Eur J Oncol Nurs. 28:98-106. doi: 10.1016/j.ejon.2017.02.003.

Noor, J. (2017). Metodologi Penelitian: Skripsi, Tesis, Disertasi & Karya Ilmiah.
Jakarta: Kencana

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

Nurhidayah, I., Hendrawati, S., Mediani, H. S., & Adistie, F. (2016). Kualitas
Hidup pada Anak dengan Kanker. Jurnal Keperawatan Padjadjaran, 4(1).

Nursalam. (2013). Metodologi Penelitian Ilmu Keperawatan. Jakarta: Salemba

Medika

Olagunju, A. T., Sarimiye, F. O., Olagunju, T. O., Habeebu, M. Y. M., & Aina, O.
F. (2016). Child’s symptom burden and depressive symptoms among
 caregivers of children with cancers: an argument for early integration of
pediatric palliative care. Annals of palliative medicine, 5(3), 157-165.

Ogle, S. K. (2006). Clinical application of family management styles to families of

children with cancer. Journal of Pediatric Oncology Nursing, 23(1), 28-31.

O’Neil, C.A.S. (2007). The Development of the Normalization Assesment Measure

: Dissertation. Nashville, Tennessee : Graduate School of Vanderbilt
University

Permono, H.B., Sutaryo., Ugrasena, L. D. G., Windiastuti, E., & Abdulsalam, M.

(2006). Hematologi-Onkologi Anak. Cetakan kedua. Jakarta: Badan
Penerbit IDAI

Polit, D, F & Beck, C. T. (2014). Essentials of Nursing Research: Appraising

Evidence for Nursing Practice. China: Wolters Kluwer Health Lippincott
Williams & Wilkins

Polit, D. F., & Beck, C. T., (2012). Nursing Research: Generating and Assessing
Evidence for Nursing Practice (9th ed.). Philadelphia, PA: Lippincott

Potts, N.L & Mandleco. (2012). Pediatric Nursing Caring for Children and Their
Family. (3rd ed). USA: Delmar Chengage Learning

Protudjer, J. L., Kozyrskyj, A. L., Becker, A. B., & Marchessault, G. (2009).

Normalization strategies of children with asthma. Qualitative Health
Research, 19(1), 94-104.

Price, S. A & Wilson, L. M. (2006) Patofisiologi. Konsep Klinis Proses-Proses

Penyakit. Jakarta: EGC

Rabbani, A., & Alexander, G. C. (2009). The association between family structure,
reports of illness and health care demand for children: evidence from rural
Bangladesh. Journal of biosocial science, 41(5), 645-659.

Rosenberg-Yunger, Z. R., Granek, L., Sung, L., Klaassen, R., Dix, D., Cairney, J.,
& Klassen, A. F. (2013). Single-parent caregivers of children with cancer:
factors assisting with caregiving strains. Journal of Pediatric Oncology
Nursing, 30(1), 45-55.

Rubira, E. A., Marcon, S. R., Belasco, A. G. S., Gaíva, M. A. M., & Espinosa, M.
M. (2012). Burden and quality of life of caregivers of children and
adolescents with chemotherapy treatment for cancer. Acta Paulista de
Enfermagem, 25(4), 567-573.
Ryan, P., & Sawin, K. J. (2009). The individual and family self-management
theory: Background and perspectives on context, process, and
outcomes. Nursing outlook, 57(4), 217-225.

Santo, E. A. R. D. E., Gaíva, M. A. M., Espinosa, M. M., Barbosa, D. A., & Belasco,
A. G. S. (2011). Taking care of children with cancer: evaluation of the
caregivers' burden and quality of life. Revista Latino-Americana de
Enfermagem, 19(3), 515-522.

Santosa, P. W & Hidayat, A. (2014). Riset Terapan Tori dan Aplikasinya. Mahir
Menggunakan Metode Statistika untuk Penelitian Ilmiah. Jakarta: PT.
Globastat Solusi Utama.

Sarafino, E. P. (2006). Health Psychology: Biopsychosocial Interaction (5 th ed).

USA: Jhon Wiley & Sons, Inc.

Sastroasmoro, S & Ismael, S. (2014). Dasar-dasar Metodologi Penelitian Klinis.

Jakarta: Sagung Seto

Siegel, R.L., Miller, K.D., & Jemal, A. (2017). Cancer statistic 2017. CA: Cancer
Journal for Clinicians ; 67 : 7-30

Simanjorang, C., Kodim, N., & Tehuteru, E. (2013). Perbedaan Kesintasan 5 Tahun
Pasien Leukemia Limfoblastik Akut Dan Leukemia Mieloblastik Akut Pada
Anak Di Rumah Sakit Kanker Dharmais, Jakarta, 1997-2008. Indonesian
Journal of Cancer, 7(1).

Sugiono. (2014). Statistika untuk Penelitian. Cetakan ke-24. Bandung: Penerbit

Alfabeta

Sundler, A. J., Hallström, I., Hammarlund, K., & Björk, M. (2013). Living an
everyday life through a child’s cancer trajectory: families’ lived experiences
7 years after diagnosis. Journal of Pediatric Oncology Nursing, 30(6), 293-
300.

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

Review. Unpad Press: Bandung

Toly, V.A.B. (2009). Normalization and Family Functioning in Families with a

Child who is Technology Dependent. Dissertation. Frances Payne Bolton
School of Nursing

Toly, V. B., Musil, C. M., & Carl, J. C. (2012). Families with children who are
technology dependent: normalization and family functioning. Western
Journal of Nursing Research, 34(1), 52-71.
Toly, V. B., & Musil, C. M. (2015). Factors related to depressive symptoms in
mothers of technology-dependent children. Issues in mental health
nursing, 36(7), 518-527.

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

Vessey, J. A., & Rumsey, M. (2004). Chronic conditions and child

development. Primary care of the child with a chronic condition, 4, 23-43.

Vlachioti, E., Matziou, V., Perdikaris, P., Mitsiou, M., Stylianou, C., Tsoumakas,
K., & Moschovi, M. (2016). Assessment of quality of life of children and
adolescents with cancer during their treatment. Japanese journal of clinical
oncology, 46(5), 453-461.

Wollenhaupt, J., Rodgers, B., & Sawin, K. J. (2012). Family management of a

chronic health condition: Perspectives of adolescents. Journal of family
nursing, 18(1), 65-90.

Warner, E. L., Kirchhoff, A. C., Nam, G. E., & Fluchel, M. (2014). Financial burden
of pediatric cancer for patients and their families. Journal of oncology
practice, 11(1), 12-18.

Wiener L, Pao M, Battles H, Zadeh S, Patenaude A, Madan-Swain A, Kupst MJ.

(2014). Socio-environmental factors associated with lone parenting
chronically ill children. Child Health Care; 42:265– 280.

Winahyu, K. M., Hemchayat, M., & Charoensuk, S. (2015). Factors affecting

quality of life family caregiver of patients with schizophrenia in Indonesia.
J Health Res vol.29(Suppl.1): S77-82.

Wolfe-Christensen, C., Mullins, L. L., Fedele, D. A., Rambo, P. L., Eddington, A.,
& Carpentier, M. Y. (2010). The relation of caregiver demand to adjustment
outcomes in children with cancer: The moderating role of parenting
stress. Children's Health Care, 39(2), 108-124.

Wong, D. L., Hockenberry-Eaton, M., Wilson, D., Winkelstein,M. L & Schwartz,

P. (2009). Buku Ajar Keperawatan Pediatrik Volume 1 Edisi 6. Jakarta:
EGC.

Young-Saleme, T. K., & Prevatt, F. F. (2001). Brief report: Psychometric

evaluation of the severity of illness scale in a pediatric oncology
sample. Journal of pediatric psychology, 26(1), 55-60.
Zhang, Y., Wei, M., Shen, N., & Zhang, Y. (2015). Identifying factors related to
family management during the coping process of families with childhood
chronic conditions: A multi-site study. Journal of pediatric nursing, 30(1),
160-173.

Zhang, Y., Wei, M., Han, H. R., Zhang, Y., & Shen, N. (2013). Testing the
applicability of the family management style framework to Chinese
families. Western journal of nursing research, 35(7), 920-942.

Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The
multidimensional scale of perceived social support. Journal of personality
assessment, 52(1), 30-41.

Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (2017). The
Multidimensional Scale of Perceived Social Support.
http://gzimet.wixsite.com/mspss.