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BMC Health Services Research
Published in: BMC Health Services Research 1/2024

Open Access 01-12-2024 | Research

The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review

Authors: Judith Schröder, Kirsti Riiser, Heidi Holmen

Published in: BMC Health Services Research | Issue 1/2024

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Abstract

Background

Families with children who have life-limiting or life-threatening illnesses often prefer to receive care at home to maintain a sense of normalcy. However, caring for children at home is different from caring for them in a hospital, and we do not know enough about the needs of healthcare personnel who provide home-based pediatric palliative care.

Aim

The aim of this review was to systematically summarize, appraise and synthesize available quantitative, qualitative, and mixed methods research to identify the needs of healthcare personnel in home-based pediatric palliative care.

Methods

We used the Joanna Briggs Institute methodology for mixed method systematic reviews and searched systematically in Medline, Embase, PsycINFO, CINAHL, Web of Science, AMED, and the Cochrane Library. Quantitative, qualitative and mixed methods studies from 2012 to 2021 reporting on healthcare personnel’s needs, experiences, perspectives, coping strategies, and/or challenges related to home-based pediatric palliative care were eligible for inclusion. The screening was conducted independently in pairs. The quantitative data were transformed into qualitative data and analyzed using thematic synthesis.

Results

Overall, 9285 citations were identified, and 21 studies were eligible for review. Most of the studies were qualitative and interview-based. Few studies included healthcare personnel other than doctors and nurses. Three analytical themes were developed: (1) being connected and engaged with the child and family, (2) being part of a dedicated team, and (3) ensuring the quality of home-based pediatric palliative care services. Healthcare personnel strived to deliver high-quality, home-based pediatric palliative care. Establishing a relationship with the child and their parents, collaborating within a committed team, and having sufficient resources were identified as important needs influencing healthcare personnel when providing home-based pediatric palliative care.

Conclusion

The findings underscore the importance of building trusting relationships among healthcare personnel, children, and families. It also emphasizes the significance of interdisciplinary collaboration that is effective, along with the presence of enough skilled personnel to ensure high-quality home-based pediatric palliative care. Further research is necessary to include healthcare personnel beyond doctors and nurses, as palliative care requires a team of professionals from various disciplines. Addressing the needs of healthcare personnel can ensure safe and professional palliative care for children at home.
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Literature
1.
2.
Arias-Casais N, Garralda E, Pons JJ, Marston J, Chambers L, Downing J, et al. Mapping Pediatric Palliative Care Development in the WHO-European Region: children living in Low-to-Middle-Income Countries are less likely to Access it. J Pain Symptom Manage. 2020;60(4):746–53.PubMedCrossRef
3.
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 Palliat Care. 2020;19(1):165.PubMedPubMedCentralCrossRef
4.
Boyden JY, Curley MAQ, Deatrick JA, Ersek M. Factors Associated with the Use of U.S. community–based Palliative Care for Children with Life-limiting or life-threatening illnesses and their families: an integrative review. J Pain Symptom Manage. 2018;55(1):117–31.PubMedCrossRef
5.
Malcolm C, Knighting K, Taylor C. Home-based end of Life Care for Children and their families – A systematic scoping review and narrative synthesis. J Pediatr Nurs. 2020;55:126–33.PubMedCrossRef
6.
Benini F, Papadatou D, Bernadá M, Craig F, De Zen L, Downing J, et al. International standards for Pediatric Palliative Care: from IMPaCCT to GO-PPaCS. J Pain Symptom Manage. 2022;63(5):e529–e43.PubMedCrossRef
7.
Lee J, Clarke S, Lynn F. Understanding the causes of Work-related stress among registered nurses working with children at home: an integrative literature review. Compr Child Adolesc Nurs. 2021;44(2):90–121.PubMedCrossRef
8.
Wager J, Kubek LA, Brenner M, Calmanti S, Doyle C, Lövgren M, et al. Expert survey on coverage and characteristics of pediatric palliative care in Europe – a focus on home care. BMC Palliat Care. 2022;21(1):185.PubMedPubMedCentralCrossRef
9.
Rabbetts L, Harrington A, Breaden K. Nurses’ experience of providing home-based palliative care in the country setting: an integrated literature review. Int J Nurs Pract. 2020;26(1):e12773-n/a.PubMedCrossRef
10.
Lizarondo L, Stern C, Carrier J, Godfrey C, Rieger K, Salmond S et al. Chapter 8: Mixed methods systematic reviews. JBI, 2020 [cited 2023 Apr 23]. In: JBI Manual for Evidence Synthesis [Internet]. [cited 2023 Apr 23]. Available from: https://​synthesismanual.​jbi.​global/​.
11.
Royse DD, Staton-Tindal M, Badger K, Webster MJ, What Is Needs. Assessment? 2009. In: Needs assessment [Internet]. New York: Oxford University PressPocket guides to social work research methods; [3–20].
12.
Cooke A, Smith D, Booth A, Beyond PICO. The SPIDER Tool for qualitative evidence synthesis. Qual Health Res. 2012;22(10):1435–43.PubMedCrossRef
13.
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).
14.
Neimann Rasmussen L, Montgomery P. The prevalence of and factors associated with inclusion of non-english language studies in Campbell systematic reviews: a survey and meta-epidemiological study. Syst Rev. 2018;7(1):129.PubMedPubMedCentralCrossRef
15.
Veritas Health Innovation. Covidence systematic review software. Australia: Melbourne; 2022.
16.
Hong QN, Fàbregues S, Bartlett G, Boardman F, Cargo M, Dagenais P, et al. The mixed methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Educ Inf. 2018;34(4):285–91.
17.
18.
Bertrand A, Veyet V, Goy F, Cervos M, Schell M. Pediatric palliative care at home by Home Care Unit: how home nurses feel? Supportive Care in Cancer. 2021.
19.
Bradford NK, Young J, Armfield NR, Herbert A, Smith AC. Home telehealth and paediatric palliative care: clinician perceptions of what is stopping us? BMC Palliat Care. 2014;13(1):10.CrossRef
20.
Brenner M, Connolly M, Cawley D, Howlin F, Berry J, Quinn C. Family and healthcare professionals’ perceptions of a pilot hospice at home programme for children: a qualitative study. BMC Palliat Care. 2016;15(1):1–8.CrossRef
21.
Campbell LM, Amin N. Dilemmas of telling bad news: paediatric palliative care providers’ experiences in rural KwaZulu-Natal, South Africa. SAJCH South African Journal of Child Health. 2013;7(3):113–6.CrossRef
22.
Castor C, Hallstrom I, Hansson H, Landgren K. Home care services for sick children: Healthcare professionals’ conceptions of challenges and facilitators. J Clin Nurs. 2017;26(17–18):2784–93.PubMedCrossRef
23.
Chong L, Abdullah A. Community Palliative Care nurses’ challenges and coping strategies on delivering home-based Pediatric Palliative Care. Am J Hospice Palliat Med. 2017;34(2):125–31.CrossRef
24.
Kremeike K, Eulitz N, Junger S, Sander A, Geraedts M, Reinhardt D. Paediatric palliative home care in areas of Germany with low population density and long distances: a questionnaire survey with general paediatricians. BMC Res Notes. 2012;5:498.PubMedPubMedCentralCrossRef
25.
Neilson S, Gibson F, Jeffares S, Greenfield SM. GPs and paediatric oncology palliative care: a Q methodological study. BMJ Supportive & Palliative care. 2020;10(2):e11.CrossRef
26.
Neilson SJ, Kai J, McArthur C, Greenfield S. Using social worlds theory to explore influences on community nurses’ experiences of providing out of hours paediatric palliative care. J Res Nurs. 2013;18(5):443–56.CrossRef
27.
Porter AS, Zalud K, Applegarth J, Woods C, Gattas M, Rutt E et al. Community Hospice Nurses’ Perspectives on Needs, Preferences, and Challenges Related to Caring for Children with Serious Illness. JAMA Netw Open. 2021;4(10) (no pagination).
28.
Reid FC. Grief and the experiences of nurses providing palliative care to children and young people at home. Nurs Child Young People. 2013;25(9):31–6.PubMedCrossRef
29.
Reid FC. Lived experiences of adult community nurses delivering palliative care to children and young people in rural areas. Int J Palliat Nurs. 2013;19(11):541–7.PubMedCrossRef
30.
n der Geest IMM, Bindels PJE, Pluijm SMF, van der Michiels EMC, Pieters R, et al. Home-based Palliative Care for Children with Incurable Cancer: long-term perspectives of and impact on General practitioners. J Pain Symptom Manag. 2017;53(3):578–87.CrossRef
31.
Verberne LM, Kars MC, Schepers SA, Schouten-Van Meeteren AYN, Grootenhuis MA, Van Delden JJM. Barriers and facilitators to the implementation of a paediatric palliative care team. BMC Palliat Care. 2018;17(1) (no pagination).
32.
Vollenbroich R, Duroux A, Grasser M, Brandstatter M, Borasio GD, Fuhrer M. Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med. 2012;15(3):294–300.PubMedCrossRef
33.
Wallace E, Twomey M, O’Reilly M. Challenges in the management of pediatric central venous access devices in the community. Pediatr Hematol Oncol. 2012;29(5):446–9.PubMedCrossRef
34.
Weaver MS, Neumann ML, Navaneethan H, Robinson JE, Hinds PS. Human touch via Touchscreen: rural nurses’ experiential perspectives on Telehealth Use in Pediatric Hospice Care. J Pain Symptom Manag. 2020;60(5):1027–33.CrossRef
35.
Rico-Mena P, Güeita-Rodríguez J, Martino-Alba R, Castel-Sánchez M, Palacios-Ceña D. The emotional experience of caring for children in Pediatric Palliative Care: a qualitative study among a home-based Interdisciplinary Care Team. Child (Basel). 2023;10(4):700.
36.
Larsen SHK, Bording I, Bjergegaard M, Buchreitz J, Mouritzen BT, Brix L, et al. Paediatric end-of-life care at home. Int J Palliat Nurs. 2023;29(6):282–90.PubMedCrossRef
37.
Rico-Mena P, Güeita-Rodríguez J, Martino-Alba R, Chocarro-Gonzalez L, Sanz-Esteban I, Palacios-Ceña D. Understanding pediatric palliative care within interdisciplinary palliative programs: a qualitative study. BMC Palliat Care. 2023;22(1):80.PubMedPubMedCentralCrossRef
38.
Santana-Medina J, Rodríguez-Suárez CA. Home care needs of paediatric palliative patients perceived by professionals: a grounded theory. Enferm Clin (Engl Ed). 2023;33(3):184–94.PubMedCrossRef
39.
Page MJ, McKenzie JE, Bossuyt PM, Boutron I, Hoffmann TC, Mulrow CD, et al. The PRISMA 2020 statement: an updated guideline for reporting systematic reviews. BMJ. 2021;372:n71.PubMedPubMedCentralCrossRef
40.
Siden H, Widger K. Research in children’s palliative care. In: Hain R, Goldman A, Rapoport A, Meiring M, Hain R, Goldman A, et al. editors. Oxford Textbook of Palliative Care for Children. Oxford University Press; 2021. p. 0.
41.
Ekberg S, Bowers A, Bradford N, Ekberg K, Rolfe M, Elvidge N, et al. Enhancing paediatric palliative care: a rapid review to inform continued development of care for children with life-limiting conditions. J Paediatr Child Health. 2022;58(2):232–7.PubMedCrossRef
42.
Boyden JY, Feudtner C, Deatrick JA, Widger K, LaRagione G, Lord B, et al. Developing a family-reported measure of experiences with home-based pediatric palliative and hospice care: a multi-method, multi-stakeholder approach. BMC Palliat Care. 2021;20(1):17.PubMedPubMedCentralCrossRef
43.
Hökkä M, Martins Pereira S, Pölkki T, Kyngäs H, Hernández-Marrero P. Nursing competencies across different levels of palliative care provision: a systematic integrative review with thematic synthesis. Palliat Med. 2020;34(7):851–70.PubMedCrossRef
44.
Collier A, Hodgins M, Crawford G, Every A, Womsley K, Jeffs C, et al. What does it take to deliver brilliant home-based palliative care? Using positive organisational scholarship and video reflexive ethnography to explore the complexities of palliative care at home. Palliat Med. 2019;33(1):91–101.PubMedCrossRef
45.
Beavis J, Davis L, McKenzie S. Clinical Supervision for Support workers in Paediatric Palliative Care: A literature review. Clin Child Psychol Psychiatry. 2021;26(1):191–206.PubMedCrossRef
46.
Greenfield K, Holley S, Schoth DE, Harrop E, Howard RF, Bayliss J, et al. A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life. Palliat Med. 2020;34(6):689–707.PubMedPubMedCentralCrossRef
47.
Bradford N, Armfield NR, Young J, Smith AC. The case for home based telehealth in pediatric palliative care: a systematic review. BMC Palliat Care. 2013;12(1):4–16.PubMedPubMedCentralCrossRef
48.
Holmen H, Riiser K, Winger A. Home-based Pediatric Palliative Care and Electronic Health: systematic mixed methods review. J Med Internet Res. 2020;22(2):e16248–e.PubMedPubMedCentralCrossRef
49.
Miller KA, Baird J, Lira J, Herrera Eguizabal J, Fei S, Kysh L, et al. The Use of Telemedicine for Home-based Palliative Care for Children with Serious Illness: a scoping review. J Pain Symptom Manag. 2021;62(3):619–36e6.CrossRef
Metadata
Title
The needs of healthcare personnel who provide home-based pediatric palliative care: a mixed method systematic review
Authors
Judith Schröder
Kirsti Riiser
Heidi Holmen
Publication date
01-12-2024
Publisher
BioMed Central
Published in
BMC Health Services Research / Issue 1/2024
Electronic ISSN: 1472-6963
DOI
https://doi.org/10.1186/s12913-023-10495-7

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