Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings


  • Sumarti Endah Purnamaningsih Maria Margaretha Department of Nursing, Faculty of Medicine, Public Health and Nursing, Gadjah Mada University, Yogyakarta, Indonesia; Department of Nursing, Faculty Member, Poltekes Karya Husada, Yogyakarta, Indonesia
  • Sri Mulatsih Department of Nursing, Faculty of Medicine, Public Health and Nursing, Gadjah Mada University, Yogyakarta, Indonesia
  • Christantie Effendy Department of Surgery Nursing, Faculty of Medicine, Public Health and Nursing, Gadjah Mada University, Yogyakarta, Indonesia https://orcid.org/0000-0002-8823-229X
  • Hari Kusnanto Departement of Family Medicine Community, Faculty of Medicine, Public Health and Nursing, Gadjah Mada University, Yogyakarta, Indonesia




Cancer, Children, Family-centered care, Palliative care, Nurses, Qualitative study


Background: Many children with cancer are faced with fatal diagnosis and unbearable pain, and palliative care is highly needed. In Indonesia, the provision of palliative care is only accessible in a few major cities where most cancer treatment facilities are located and development has been slow. While, the implementation of family center care identified a number of challenges related to family empowerment to be included in the development and implementation of interventions.

Objectives: This study aimed to assess the perspectives of nurses regarding family-centered treatment in Indonesia’s palliative wards for children with cancer.

Methods: A qualitative approach to content analysis was employed. The study participants were 10 primary nurses in pediatric units who worked with cancer patients regularly. These participants were purposefully chosen. The interview session included 10 study participants. Participants’ work experience ranged from 2 to 11 years, and their age ranged from 27 to 51 years. Data were collected via face-to-face, semi-structured interviews that lasted for an average of 30 to 45 minutes. The interviews were performed to explore the participants’ understanding about the definition of family-centered palliative care, including the needs and obstacles to implementation. These were analyzed using content analysis methodology that includes five main segments: introduction, coding, theme creation, thematic classification, and reporting.

Results: The themes from the study included an appreciation of palliative and family-centered care, palliative care capability and family-centered care, and multidisciplinary cooperation under three principles concerning needs and barriers.

Conclusion: Integrating family-centered care approaches in providing palliative care for children with cancer as well as the resources required for such programs to be implemented by hospital management in working toward improved quality care for patients. Communication and continuity of care remain a challenge; training and equipping clinicians with skills and confidence to carry out family-centered care approaches and palliative care for children with cancer can aid in this process.


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Rodriguez-Galindo C, Friedrich P, Alcasabas P, Antillon F, Banavali S, Castillo L, et al. Toward the cure of all children with cancer through collaborative efforts: pediatric oncology as a global challenge. J Clin Oncol. 2015;33(27):3065. https://doi.org/10.1200/jco.2014.60.6376 PMid:26304881

Cavalli F, Atun R. Towards a global cancer fund. Lancet Oncol. 2015;16(2):133-4. PMid:25638677

Gupta S, Rivera-Luna R, Ribeiro RC, Howard SC. Pediatric oncology as the next global child health priority: The need for national childhood cancer strategies in low-and middle-income countries. PLoS Med. 2014;11(6):e1001656. https://doi.org/10.1371/journal.pmed.1001656 PMid:24936984

Shulman LN, Mok TS. Special issue on global cancer medicine. J Clin Oncol. 2016;34(1):1-2. PMid:26578609

Weaver MS, Yao AJ, Renner LA, Harif M, Lam CG. The prioritisation of paediatrics and palliative care in cancer control plans in Africa. Br J Cancer. 2015;112(12):1845-56. https://doi.org/10.1038/bjc.2015.158 PMid:26042935

Chan MH, Boop F, Qaddoumi I. Challenges and opportunities to advance pediatric neuro-oncology care in the developing world. Childs Nerv Syst. 2015;31(8):1227-37. https://doi.org/10.1007/s00381-015-2771-x PMid:26040936

Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, et al. Pediatric palliative care patients: A prospective multicenter cohort study. Pediatrics. 2011;127(6):1094-101. https://doi.org/10.1542/peds.2010-3225 PMid:21555495

Widger K, Davies D, Drouin DJ, Beaune L, Daoust L, Farran RP, et al. Pediatric patients receiving palliative care in Canada: Results of a multicenter review. Arch Pediatr Adolesc Med. 2007;161(6):597-602. https://doi.org/10.1001/archpedi.161.6.597 PMid:17548766

Pui CH, Gajjar AJ, Kane JR, Qaddoumi IA, Pappo AS. Challenging issues in pediatric oncology. Nat Rev Clin Oncol. 2011;8(9):540-9. https://doi.org/10.1038/nrclinonc.2011.95 PMid:21709698

Association CHPC. Pediatric Hospice Palliative Care, Guiding Principles and Norms of Practice. Available from: https://www.chpca.ca/product/pediatric-hospice-palliative-care-guiding-principles-and-norms-of-practice-download/. [Last accessed on 2006 Oct 10].

World Health Organization. Definition of Palliative Care for Children. Geneva: World Health Organization; 2013.

Jones BL. Companionship, control, and compassion: A social work perspective on the needs of children with cancer and their families at the end of life. J Palliat Med. 2006;9(3):774-88. PMid:16752983

Kikule E. A good death in Uganda: Survey of needs for palliative care for terminally ill people in urban areas. BMJ. 2003;327(7408):192-4. https://doi.org/10.1136/bmj.327.7408.192 PMid:12881259

Harding R, Powell RA, Downing J, Connor SR, Mwangi-Powell F, Defilippi K, et al. Generating an African palliative care evidence base: The context, need, challenges, and strategies. J Pain Symptom Manage. 2008;36(3):304-9. https://doi.org/10.1016/j.jpainsymman.2008.04.008 PMid:18722312

Ntizimira CR, Nkurikiyimfura JL, Mukeshimana O, Ngizwenayo S, Mukasahaha D, Clancy C. Palliative care in Africa: A global challenge. Ecancermedicalscience. 2014;8:493. https://doi.org/10.3332/ecancer.2014.493 PMid:25624874

McGrath JM, Samra HA, Kenner C. Family-centered developmental care practices and research: What will the next century bring? J Perinat Neonatal Nurs. 2011;25(2):165-70. https://doi.org/10.1097/jpn.0b013e31821a6706 PMid:21540694

Eichner JM, Johnson BH, Betts JM, Chitkara MB, Jewell JA, Lye PS, et al. Patient-and family-centered care and the pediatrician’s role. Pediatrics. 2012;129(2):394-404. https://doi.org/10.1542/peds.2011-3084 PMid:22291118

Perrin JM, Romm D, Bloom SR, Homer CJ, Kuhlthau KA, Cooley C, et al. A family-centered, community-based system of services for children and youth with special health care needs. Arch Pediatr Adolesc Med. 2007;161(10):933-6. https://doi.org/10.1001/archpedi.161.10.933 PMid:17909135

Kokorelias KM, Gignac MA, Naglie G, Cameron JI. Towards a universal model of family centered care: A scoping review. BMC Health Serv Res. 2019;19(1):564. https://doi.org/10.1186/ s12913-019-4394-5 PMid:31409347

Coats H, Bourget E, Starks H, Lindhorst T, Saiki-Craighill S, Curtis JR, et al. Nurses’ reflections on benefits and challenges of implementing family-centered care in pediatric intensive care units. Am J Crit Care. 2018;27(7):52-8. https://doi.org/10.4037/ajcc2018353 PMid:29292276

Meert KL, Clark J, Eggly S. Family-centered care in the pediatric intensive care unit. Pediatr Clin North Am. 2013;60(3):761-72. https://doi.org/10.1016/j.pcl.2013.02.011 PMid:23639667

Kaambwa B, Bryan S, Jowett S, Mant J, Bray EP, Hobbs FD, et al. Telemonitoring and self-management in the control of hypertension (TASMINH2): A cost-effectiveness analysis. Eur J Prev Cardiol. 2014;21(12):1517-30. https://doi.org/10.1177/2047487313501886 PMid:23990660

Kenner C, Press J, Ryan D. Recommendations for palliative and bereavement care in the NICU: A family-centered integrative approach. J Perinatol. 2015;35(1):S19-23. https://doi.org/10.1038/jp.2015.145 PMid:26597801

Kissane DW. The challenge of family-centered care in palliative medicine. Ann Palliat Med. 2016;5(4):319-21. https://doi.org/10.21037/apm.2016.08.04 PMid:27806627

Gilmer MJ. Pediatric palliative care: A family-centered model for critical care. Crit Care Nurs Clin North Am. 2002;14(2):207. https://doi.org/10.1016/s0899-5885(01)00013-2 PMid:12038509

Guyatt GH, Oxman AD, Vist GE, Kunz R, Falck-Ytter Y, Alonso-Coello P, et al. GRADE: An emerging consensus on rating quality of evidence and strength of recommendations. BMJ. 2008;336(7650):924-6. https://doi.org/10.1136/bmj.39489.470347.ad PMid:18436948

Putranto R, Mudjaddid E, Shatri H, Adli M, Martina D. Development and challenges of palliative care in Indonesia: Role of psychosomatic medicine. Biopsychosoc Med. 2017;11:29. https://doi.org/10.1186/s13030-017-0114-8 PMid:29201137

Rochmawati E, Wiechula R, Cameron K. Current status of palliative care services in Indonesia: A literature review. Int Nurs Rev. 2016;63(2):180-90. https://doi.org/10.1111/inr.12236 PMid:26751254

Tanaem GH, Dary M, Istiarti E. Family centered care pada perawatan anak di rsud soe timor tengah selatan. J Ris Kesehat. 2019;8:21.

Bryman A, Burgess B. Analyzing Qualitative Data. London, United Kingdom: Routledge; 2002. https://doi.org/10.31983/jrk.v8i1.3918

Ritchie J, Lewis J, Nicholls CM, Ormston R. Qualitative Research Practice: A Guide for Social Science Students and Researchers. United States: SAGE; 2013.

Creswell JW, Fetters MD, Ivankova NV. Designing a mixed methods study in primary care. Ann Fam Med. 2004;2(1):7-12. PMid:15053277

Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3:77-101.

Flick U. An Introduction to Qualitative Research. United States: Sage Publications Limited; 2018.

Klassen A, Gulati S, Dix D. Health care providers’ perspectives about working with parents of children with cancer: A qualitative study. J Pediatr Oncol Nurs. 2012;29(2):92-7. https://doi.org/10.1177/1043454212438405 PMid:22415857

Ngwenya N, Ambler J, Archary M. Qualitative situational analysis of palliative care for adolescents with cancer and HIV in South Africa: Healthcare worker perceptions. BMJ Open. 2019;9:023225. https://doi.org/10.1136/bmjopen-2018-023225

Thompson K, Dyson G, Holland L, Joubert L. An exploratory study of oncology specialists’ understanding of the preferences of young people living with cancer. Soc Work Health Care. 2013;52(2-3):166-90. https://doi.org/10.1080/00981389.2012.737898 PMid:23521383

Davies S, Salmon P, Young B. When trust is threatened: Qualitative study of parents’ perspectives on problematic clinical relationships in child cancer care. Psychooncology. 2017;26(9):1301-6. https://doi.org/10.1002/pon.4454 PMid:28494129

Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. J Clin Oncol. 2020;38(9):954-62. https://doi.org/10.1200/jco.18.02331 PMid:32023163

Finley GA, Kristjánsdóttir Ó, Forgeron PA. Cultural influences on the assessment of children’s pain. Pain Res Manage. 2009;14(1):33-7. https://doi.org/10.1155/2009/763031 PMid:19262914

Downing J, Jassal SS, Mathews L, Brits H, Friedrichsdorf SJ. Pediatric pain management in palliative care. Pain Manage. 2015;5(1):23-35. https://doi.org/10.2217/pmt.14.45 PMid:25537696

Vasileiou K, Barnett J, Thorpe S, Young T. Characterising and justifying sample size sufficiency in interview-based studies: Systematic analysis of qualitative health research over a 15-year period. BMC Med Res Methodol. 2018;18(1):148. https://doi.org/10.1186/s12874-018-0594-7 PMid:30463515




How to Cite

Endah Purnamaningsih Maria Margaretha S, Mulatsih S, Effendy C, Kusnanto H. Qualitative Analysis of Family-centered Care for Children with Cancer in Palliative Wards: An Evaluation of Needs and Barriers in Resource-limited Settings. Open Access Maced J Med Sci [Internet]. 2021 Jun. 26 [cited 2021 Oct. 19];9(G):1-7. Available from: https://oamjms.eu/index.php/mjms/article/view/6202



Nursing in Pediatrics