Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review

Ashleen Crowe; Fiona Hurley; Gemma Kiernan; Helen Kerr; Yvonne Corcoran; Jayne Price; Joanne Reid; Eileen Courtney; Tracey McConnell; Patricia McNeilly; Veronica Lambert

Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review

Ashleen Crowe
, Fiona Hurley
, Gemma Kiernan
, Helen Kerr
, Yvonne Corcoran
, Jayne Price
, Joanne Reid
, Eileen Courtney
, Tracey McConnell
, Patricia McNeilly
, Veronica Lambert

Research output: Contribution to journal › Article › peer-review

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Abstract

Background: Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim: To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design: A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources: CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results: Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion: There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.

Original language	English
Article number	24
Journal	BMC Palliative Care
Volume	24
Early online date	27 Jan 2025
Publication status	Published - Dec 2025

Bibliographical note

Note: This programme of research is supported by the Higher Education Authority (HEA) North-South Research Programme, Shared Island Fund, on behalf of the Department of Further and Higher Education, Research Innovation and Science (DFHERIS) [Grant ID: CO-DECIDE].

Keywords

Nursing and midwifery
Decision-making
End-of-life
Pediatrics
Systematic integrative review
Palliative care
Place of care
Life-limiting life-threatening conditions
Paediatrics

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Price-J-56715-VoRFinal published version, 1.18 MBLicence: CC BY-NC-ND

https://doi.org/10.1186/s12904-025-01661-1

Cite this

Crowe, A., Hurley, F., Kiernan, G., Kerr, H., Corcoran, Y., Price, J., Reid, J., Courtney, E., McConnell, T., McNeilly, P., & Lambert, V. (2025). Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review. BMC Palliative Care, 24, Article 24. https://doi.org/10.1186/s12904-025-01661-1

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abstract = "Background: Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While {\textquoteleft}home{\textquoteright} is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim: To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design: A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources: CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results: Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents{\textquoteright} capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion: There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents{\textquoteright} perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.",

keywords = "Nursing and midwifery, Decision-making, End-of-life, Pediatrics, Systematic integrative review, Palliative care, Place of care, Life-limiting life-threatening conditions, Paediatrics",

author = "Ashleen Crowe and Fiona Hurley and Gemma Kiernan and Helen Kerr and Yvonne Corcoran and Jayne Price and Joanne Reid and Eileen Courtney and Tracey McConnell and Patricia McNeilly and Veronica Lambert",

note = "Note: This programme of research is supported by the Higher Education Authority (HEA) North-South Research Programme, Shared Island Fund, on behalf of the Department of Further and Higher Education, Research Innovation and Science (DFHERIS) [Grant ID: CO-DECIDE].",

year = "2025",

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volume = "24",

journal = "BMC Palliative Care",

issn = "1472-684X",

publisher = "BioMed Central Ltd",

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TY - JOUR

T1 - Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions

T2 - a systematic integrative review

AU - Crowe, Ashleen

AU - Hurley, Fiona

AU - Kiernan, Gemma

AU - Kerr, Helen

AU - Corcoran, Yvonne

AU - Price, Jayne

AU - Reid, Joanne

AU - Courtney, Eileen

AU - McConnell, Tracey

AU - McNeilly, Patricia

AU - Lambert, Veronica

N1 - Note: This programme of research is supported by the Higher Education Authority (HEA) North-South Research Programme, Shared Island Fund, on behalf of the Department of Further and Higher Education, Research Innovation and Science (DFHERIS) [Grant ID: CO-DECIDE].

PY - 2025/12

Y1 - 2025/12

N2 - Background: Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim: To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design: A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources: CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results: Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion: There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.

AB - Background: Due to medical advancements the number of children living with life-limiting and life-threatening conditions is rising, meaning more children and their families will require palliative and end-of-life care in the future. While ‘home’ is often the preferred place of end-of-life care, the evidence around best practice for decision-making about place of end-of-life care remains inadequate. Aim: To synthesise evidence on the factors influencing decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Design: A systematic integrative literature review. The review protocol was registered in Prospero: CRD42023406800. Data sources: CINAHL, MEDLINE, EMBASE, PsycINFO, and Maternal and Infant Health were searched for studies published between 2013 and 2024. Any empirical, peer-reviewed journal articles published in English that included data pertaining to decision-making about place of end-of-life care for children (≤ 18 years) with life-limiting or life-threatening conditions were considered. Quality appraisal was conducted using the Mixed Methods Appraisal Tool. Results: Eleven eligible studies were included. Using an iterative process of constant data comparison, four themes were identified, highlighting that (i) consideration of the child, (ii) availability and suitability of end-of-life care services, (iii) parents’ capacity and control in providing care, and (iv) family and sibling well-being were factors influencing decision-making about place of end-of-life care. Conclusion: There are a complex range of factors surrounding decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions. Studies focused primarily on parents’ perspectives. Further research is needed to identify how to best support decisions about place of end-of-life care for families of children with life-limiting and life-threatening conditions.

KW - Nursing and midwifery

KW - Decision-making

KW - End-of-life

KW - Pediatrics

KW - Systematic integrative review

KW - Palliative care

KW - Place of care

KW - Life-limiting life-threatening conditions

KW - Paediatrics

M3 - Article

SN - 1472-684X

VL - 24

JO - BMC Palliative Care

JF - BMC Palliative Care

M1 - 24

ER -

Decision-making regarding place of end-of-life care for children with life-limiting and life-threatening conditions: a systematic integrative review

Abstract

Bibliographical note

Keywords

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