Hostname: page-component-76fb5796d-22dnz Total loading time: 0 Render date: 2024-04-28T07:32:56.926Z Has data issue: false hasContentIssue false
  • English
  • Français

Hospital, hospice, or home: A scoping review of the importance of place in pediatric palliative care

Published online by Cambridge University Press:  26 June 2023

Meaghan Walker Open the ORCID record for Meaghan Walker [Opens in a new window] ,
Danielle Nicolardi ,
Téa Christopoulos  and
Timothy Ross
Meaghan Walker*
Affiliation:
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
Danielle Nicolardi
Affiliation:
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
Téa Christopoulos
Affiliation:
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada
Timothy Ross
Affiliation:
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada Department of Geography & Planning, University of Toronto, Toronto, Canada Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada
*
Corresponding author: Meaghan Walker; Email: meaghan.walker@hollandbloorview.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

Background

Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort. Despite the importance of place, there is remarkably little literature exploring its role in pediatric palliative care (PPC).

Objectives

To understand the importance and meaning of place in PPC.

Methods

We conducted a scoping review to understand the importance of place in PPC. Five databases were searched using keywords related to “pediatric,” “palliative,” and “place.” Two reviewers screened results, extracted data, and analyzed emergent themes pertaining to place.

Results

From 3076 search results, we identified and reviewed 25 articles. The literature highlights hospital, home, and hospice as 3 distinct PPC places. Children and their families have place preferences for PPC and place of death, and a growing number prefer death to occur at home. Results also indicate numerous factors influence place preferences (e.g., comfort, grief, cultural/spiritual practices, and socioeconomic status).

Significance of results

Place influences families’ PPC decisions and experiences and thus warrants further study. Greater understanding of the importance and roles of place in PPC could enhance PPC policy and practice, as well as PPC environments.

Keywords

Palliative carePlaceChildrenPediatricHealth care
Type
Review Article
Information
Palliative & Supportive Care , Volume 21 , Issue 5 , October 2023 , pp. 925 - 934
Check for updates
Copyright
© The Author(s), 2023. Published by Cambridge University Press.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Arksey, H and O’Malley, L (2005) Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology 8(1), 19–32 doi:10.1080/1364557032000119616.CrossRefGoogle Scholar
Bender, HU, Riester, MB, Borasio, GD, et al. (2017) “Let’s bring her home first.” Patient characteristics and place of death in specialized pediatric palliative home care. Journal of Pain and Symptom Management 54(2), 159–166. doi:10.1016/j.jpainsymman.2017.04.006CrossRefGoogle ScholarPubMed
Bettini, EA (2020) COVID-19 pandemic restrictions and the use of technology for pediatric palliative care in the acute care setting. Journal of Hospice and Palliative Nursing 22(6), 432–434. doi:10.1097/NJH.0000000000000694.CrossRefGoogle ScholarPubMed
Boucher, S, Downing, J and Shemilt, R (2014) The role of play in children’s palliative care. Children 1(3), 302–317. doi:10.3390/children1030302CrossRefGoogle ScholarPubMed
Castor, C, Landgren, K, Hansson, H, et al. (2018) A possibility for strengthening family life and health: Family members’ lived experience when a sick child receives home care in Sweden. Health & Social Care in the Community 26(2), 224–231. doi:10.1111/hsc.12512CrossRefGoogle ScholarPubMed
Cohen, E and Patel, H (2014) Responding to the rising number of children living with complex chronic conditions. Canadian Medical Association Journal 186(16), 1199–1200. doi:10.1503/cmaj.141036CrossRefGoogle Scholar
Cresswell, T (2004) Place: a Short Introduction, Maldon, M (ed). Maldan, Massachusetts, USA: Blackwell Ltd.Google Scholar
Dabbs, D, Butterworth, L, and Hall, E (2007) Increasing Access to Hospice Services for Children With Life-Threatening Conditions. Retrieved from https://www.Childrenshospice.orgGoogle Scholar
Delgado-Corcoran, C, Wawrzynski, S, Bennett, E, et al. (2020) Palliative care in children with heart disease treated in an ICU. Pediatric Critical Care Medicine 21(5), 423–429. doi:10.1097/PCC.0000000000002271CrossRefGoogle Scholar
Edwardson, S (1983) The choice between hospital and home care for terminally ill children. Nursing Research 32(1), 29–34.CrossRefGoogle ScholarPubMed
Feudtner, C, Digiuseppe, DL and Neff, JM (2003) Hospital care for children and young adults in the last year of life: A population-based study. BMC Medicine 1, 1–9. doi:10.1186/1741-7015-1-3CrossRefGoogle Scholar
Gao, W, Verne, J, Peacock, J, et al. (2016) Place of death in children and young people with cancer and implications for end of life care: A population-based study in England, 1993-2014. BMC Cancer 16(1). doi:10.1186/s12885-016-2695-1CrossRefGoogle Scholar
Harcourt, D and Einarsdottir, J (2011) Introducing children’s perspectives and participation in research. European Early Childhood Education Research Journal 19(3), 301–307. doi:10.1080/1350293X.2011.597962CrossRefGoogle Scholar
Higginson, IJ and Thompson, M (2003) Children and young people who die from cancer: Epidemiology and place of death in England. British Medical Journal 327, 478–479. doi:10.1136/bmj.327.7413.478CrossRefGoogle Scholar
Himelstein, BP, Hilden, JM, Morstad Boldt, A, et al. (2004) Pediatric palliative care. The New England Journal of Medicine 350(17), 1752–1762 doi:10.1056/NEJMra030334.CrossRefGoogle ScholarPubMed
James, A, A., P, and Prout, A (1990) Contemporary Issues in the Sociological Study of Childhood, 3rd edn. Abingdon, Oxfordshire: Routledge.Google Scholar
Jennings, PD (2005) Providing pediatric palliative care through a pediatric supportive care team. Pediatric Nursing 31(3), 195–200.Google Scholar
Johnston, EE, Rosenberg, AR and Kamal, AH (2017) Pediatric-specific end-of-life care quality measures: An unmet need of a vulnerable population. Journal of Oncology Practice 13, e874–e880. doi:10.1200/JOP.2017.021766CrossRefGoogle ScholarPubMed
Jones, BW (2011) The need for increased access to pediatric hospice and palliative care. Dimensions of Critical Care Nursing 30(5), 231–235. doi:10.1097/DCC.0b013e3182276dedCrossRefGoogle ScholarPubMed
Lauer, M, Mulhern, R, Bohne, J, et al. (1985) Children’s perceptions of their sibling’s death at home or hospital: The precursors of differential adjustment. Cancer Nursing 8(1), 21–28.CrossRefGoogle ScholarPubMed
Lindley, LC, Mixer, SJ, and Mack, JW (2016) Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health. Home Health Care Services Quarterly, 35(3–4), 101–111. doi:10.1080/01621424.2016.1208133CrossRefGoogle ScholarPubMed
Loscalzo, MJ (2008) Palliative care: An historical perspective. Hematology, ASH Education Program 2008(1), . doi:10.1182/asheducation-2008.1.465Google Scholar
Martinson, I, Armstrong, G, Geis, D, et al. (1978) Facilitating home care for children dying of cancer. Cancer Nursing 1(1), 41–45.Google ScholarPubMed
Martinson, IM, Geis, D, Anglim, MA, et al. (1977) Home care for the child. The American Journal of Nursing 77(11).Google ScholarPubMed
Meert, K, Briller, S, Myers Schim, S, et al. (2008) Exploring parents’ environmental needs at the time of a child’s death in the pediatric intensive care unit. Pediatric Critical Care Medicine 9(6), 623–628. doi:10.1097/PCC.0b013e31818d30d5CrossRefGoogle ScholarPubMed
Muskat, B, Greenblatt, A, Anthony, S, et al. (2020) The experiences of physicians, nurses, and social workers providing end-of-life care in a pediatric acute-care hospital end-of-life care in a pediatric acute-care hospital. Death Studies 44(2), 105–116. doi:10.1080/07481187.2018.1526829CrossRefGoogle Scholar
Needle, J (2010) Home extubation by a pediatric critical care team: Providing a compassionate death outside the pediatric intensive care unit. Pediatric Critical Care Medicine 11(3), 401–403. doi:10.1097/PCC.0b013e3181c0143fGoogle ScholarPubMed
Nelson, H and Mott, S (2017) Translating research to practice: Providing critically ill children the opportunity to go home or to hospice for end-of-life care. Dimensions of Critical Care Nursing, 36(3), 174–181. doi:10.1097/DCC.0000000000000249CrossRefGoogle ScholarPubMed
Noje, C, Bernier, ML, Costabile, PM, Klein, BL, and Kudchadkar, SR (2017) Pediatric Critical Care Transport as a Conduit to Terminal Extubation at Home: A Case Series. Pediatric Critical Care Medicine, 18(1), e4–e8. doi:10.1097/PCC.0000000000000997CrossRefGoogle ScholarPubMed
Rapoport, A and Liben, S (2015) Paediatric palliative care: There is always more we can do. Pediatric Child Health 20(3), 123–125. doi:10.1093/pch/20.3.123CrossRefGoogle ScholarPubMed
Sanderson, A and Burns, JP (2017) Withdrawal of life-sustaining therapy at home: Broadening the view of end-of-life care in the PICU…Even in children’s homes. Pediatric Critical Care Medicine 18(1), 92–93. doi:10.1097/PCC.0000000000001005CrossRefGoogle ScholarPubMed
Schmidt, L (2003) Pediatric end-of-life care: Coming of age? Caring 12(5), 20–22.Google Scholar
Shah, A, Diggens, N, Stiller, C, Murphy, D, Passmore, J, and Murphy, MFG (2011) Place of death and hospital care for children who died of cancer in England, 1999-2006. European Journal of Cancer, 47(14), 2175–2181. doi:10.1016/j.ejca.2011.03.030CrossRefGoogle ScholarPubMed
Tang, ST, Hung, YN, Liu, TW, et al. (2011) Pediatric end-of-life care for Taiwanese children who died as a result of cancer from 2001 through 2006. Journal of Clinical Oncology 29(7), 890–894. doi:10.1200/JCO.2010.32.5639CrossRefGoogle Scholar
Taylor, J, Murphy, S, Chambers, L, et al. (2021) Consulting with young people: Informing guidelines for children’s palliative care. Archives of Disease in Childhood 106(7), 693–697. doi:10.1136/archdischild-2020-320353CrossRefGoogle ScholarPubMed
Taylor, J, Murphy, S, Chambers, L, and Aldridge, J (2021) Consulting with young people: Informing guidelines for children’s palliative care. Archives of Disease in Childhood, 106(7), 693–697. doi:10.1136/archdischild-2020-320353CrossRefGoogle ScholarPubMed
Thienprayoon, R, Lee, SC, Leonard, D, et al. (2015) Hospice care for children with cancer: Where do these children die? Journal of Pediatric Hematology/Oncology 37(5), 373–377. doi:10.1097/MPH.0000000000000331CrossRefGoogle ScholarPubMed
Vickers, J, Thompson, A, Collins, GS, et al. (2007) Place and provision of palliative care for children with progressive cancer: A study by the paediatric oncology nurses’ forum/United Kingdom children’s cancer study group palliative care working group. Journal of Clinical Oncology 25(28), 4472–4476. doi:10.1200/JCO.2007.12.0493CrossRefGoogle Scholar
Widger, K, Davies, D, Drouin, DJ, et al. (2007) Pediatric patients receiving palliative care in Canada. Archives of Pediatric and Adolescent Medicine 161, 597–602. doi:10.1001/archpedi.161.6.597CrossRefGoogle ScholarPubMed
Widger, K, Davies, D, Rapoport, A, et al. (2016) Pediatric palliative care in Canada in 2012: A cross-sectional descriptive study. Canadian Medical Association Journal 4(4), 562–568. doi:10.9778/cmajo.20160054Google ScholarPubMed
Ziegler, TR and Kuebelbeck, A (2021) Close to home: Perinatal palliative care in a community hospital. Advances in Neonatal Care 20(3), 196–203. doi:10.1097/ANC.0000000000000732CrossRefGoogle Scholar