Home-based Pediatric Palliative Care: A Narrative Review
DOI:
https://doi.org/10.33755/jkk.v8i4.421Keywords:
Children, Home-based care, Palliative, PediatricAbstract
Aims: Home-based pediatric palliative care (HBPPC) seemingly would be a promising approach to support families whose have and take care for children with life-threatening disease (LTD) and life-limiting disease (LLD) in a holistic manner. PPC is not only provided in the hospital, but also delivered in the outpatient care; community settings, including hospice and patients’ homes. The aim of this study is to delineate findings from previous studies about home-based pediatric palliative care (HBPPC) for gaining information about the benefits of implementing HBPPC.
Methods: Several search strategies, mainly using electronic databases, were employed to gain a solid body of literature constructing this article. The inclusion criteria of the studies were English text, full text, and children as the specific investigated population which were published between 2014 until 2022. We used the Scale for the Assessment of Narrative Review Articles (SANRA) for appraising and establishing a robust body of literature regarding the topic and finally there were 9 studies included in this literature review.
Results: From reviewing the available literature, it is found that home-based PPC may be an ideal approach to care for children with LTD and LLD and their families. By employing home-based PPC, both patient and caregiver may gain several benefits to manage physical, psychosocial, and emotional issues, which enhance the quality of life (QoL) for both the patients and their parents.
Conclusions: The implementation of HBPPC may improve the QoL of children with LTD and LLD, as well as their families.
References
Effendy C, Uligraff DK, Sari SH, Angraini F, Chandra L. Experiences of family caregivers of children with cancer while receiving home-based pediatric palliative care in Indonesia: a qualitative study. BMC Palliative Care. 2022;21(1):1-10.
Gurková E, Andraščíková I, Čáp J. Parents’ experience with a dying child with cancer in palliative care. Central European journal of nursing and midwifery. 2015;6(1):201-8.
Jones BL, editor The challenge of quality care for family caregivers in pediatric cancer care2012 2012: Elsevier.
Sisk BA, Feudtner C, Bluebond-Langner M, Sourkes B, Hinds PS, Wolfe J. Response to suffering of the seriously ill child: a history of palliative care for children. Pediatrics. 2020;145(1).
Woodgate RL, Edwards M, Ripat JD, Borton B, Rempel G. Intense parenting: a qualitative study detailing the experiences of parenting children with complex care needs. BMC pediatrics. 2015;15(1):1-15.
Kohlsdorf M, Costa Junior ÁL. Psychosocial impact of pediatric cancer on parents: a literature review. Paidéia (Ribeirão Preto). 2012;22:119-29.
Enguidanos S, Housen P, Penido M, Mejia B, Miller JA. Family members’ perceptions of inpatient palliative care consult services: a qualitative study. Palliative medicine. 2014;28(1):42-8.
Society of Critical Care Medicine. National Consensus Project: Clinical Practice Guidelines for Quality Palliative Care Mount Prospect, IL , USA: The Society of Critical Care Medicine, SCCM, and Critical Care Congress; 2009 [Available from: http://www.learnicu.org/Docs/Guidelines/NCPPalliativeCare2ndEd.pdf .
WHO. Palliative care: key facts Geneva: World Health Organization; 2020 [Available from: https://www.who.int/news-room/fact-sheets/detail/palliative-care.
NHPCO. Community-Based Palliative Care Demonstration Model Virginia, The U.S.A: National Hospice and Palliative Care Organization; 2018 [Available from: https://www.nhpco.org/hospice-care-overview/models-and-demos/ attachment/nhpco_x_coalition_cbpc_demo/.
WHO. Integrating palliative care and symptom relief into paediatrics: a WHO guide for health care planners, implementers and managers. Geneva: World Health Organization; 2018. Available from: https://apps.who.int/iris/bitstream/handle/10665/274561/9789241514453-eng.pdf?ua=1.
Worldwide Palliative Care Alliance, World Health Organization Global atlas of palliative care at the end of life. London: Worldwide Palliative Care Alliance. 2014.
Makwana N. Disaster and its impact on mental health: A narrative review. J Family Med Prim Care. 2019;8(10):3090-5.
Ferrari R. Writing narrative style literature reviews. Medical Writing. 2015;24(4):230-5.
Baethge C, Goldbeck-Wood S, Mertens S. SANRA—a scale for the quality assessment of narrative review articles. Research Integrity and Peer Review. 2019;4(1):5.
Hockenberry M, Wilson D. Wong's Essential of Pediatric Nursing. 8th ed. ed. St.Louis, Missouri: Mosby El Sevier; 2009.
Brock KE, Snaman JM, Kaye EC, Bower KA, Weaver MS, Baker JN, et al. Models of Pediatric Palliative Oncology Outpatient Care—Benefits, Challenges, and Opportunities. Journal of Oncology Practice. 2019;15(9):476-87.
Carroll JM, Santucci G, Kang TI, Feudtner C. Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services. American Journal of Hospice and Palliative Medicine®. 2007;24(3):191-5.
Goldhagen J, Fafard M, Komatz K, Eason T, Livingood WC. Community-based pediatric palliative care for health related quality of life, hospital utilization and costs lessons learned from a pilot study. BMC palliative care. 2016;15(1):1-12.
Gans D, Hadler MW, Chen X, Wu S-H, Dimand R, Abramson JM, et al. Cost Analysis and Policy Implications of a Pediatric Palliative Care Program. Journal of Pain and Symptom Management. 2016;52(3):329-35.
Chong LA, Khalid F. Paediatric palliative care at home: a single centre's experience. Singapore medical journal. 2016;57(2):77-80.
Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J. Improved Quality of Life at End of Life Related to Home-Based Palliative Care in Children with Cancer. Journal of Palliative Medicine. 2014;18(2):143-50.
Snaman J, McCarthy S, Wiener L, Wolfe J. Pediatric palliative care in oncology. Journal of Clinical Oncology. 2020;38(9):954.
Akard TF, Hendricks-Ferguson VL, Gilmer MJ. Pediatric palliative care nursing. Ann Palliat Med. 2019;8(Suppl 1):S39-48.
Aoun SM, Stegmann R, Deleuil R, Momber S, Cuddeford L, Phillips MB, et al. It Is a Whole Different Life from the Life I Used to Live: Assessing Parents & Support Needs in Paediatric Palliative Care. Children. 2022;9(3).
Boyden JY, Ersek M, Deatrick JA, Widger K, LaRagione G, Lord B, et al. What Do Parents Value Regarding Pediatric Palliative and Hospice Care in the Home Setting? Journal of Pain and Symptom Management. 2021;61(1):12-23.
Andriastuti M, Halim PG, Tunjungsari E, Widodo DP. Home-based Palliative Intervention to Improve Quality of Life in Children with Cancer: A Randomized Controlled Trial. Journal of Clinical Oncology. 2019;38(9):954-62.
Verberne LM, Kars MC, Schouten-van Meeteren AYN, van den Bergh EMM, Bosman DK, Colenbrander DA, et al. Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study. European Journal of Pediatrics. 2019;178(7):1075-85.
Wiener L, Rosenberg AR, Lichtenthal WG, Tager J, Weaver MS. Personalized and yet standardized: An informed approach to the integration of bereavement care in pediatric oncology settings. Palliative and Supportive Care. 2018;16(6):706-11.
Tutelman PR, Lipak KG, Adewumi A, Fults MZ, Humphrey LM, Gerhardt CA. Concerns of Parents With Children Receiving Home-Based Pediatric Palliative Care. Journal of Pain and Symptom Management. 2021;61(4):705-12.
Collins A, Hennessy-Anderson N, Hosking S, Hynson J, Remedios C, Thomas K. Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study. Palliative Medicine. 2016;30(10):950-9.
Winger A, Kvarme LG, Løyland B, Kristiansen C, Helseth S, Ravn IH. Family experiences with palliative care for children at home: a systematic literature review. BMC Palliative Care. 2020;19(1):165.
Neuburg L. Early initiation of pediatric palliative care. Journal of Pediatric Health Care. 2021;35(1):114-9.
