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Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences

Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences
Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences

Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim: To understand parents' experience of advance care planning for a child or young person with a life-limiting condition. Design: Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. Data sources: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms. Results: 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. Conclusions: Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.

end of life care, paediatrics, terminal care
2045-435X
1 - 23
Bennett, Helen Elizabeth
3e412041-2fcd-4aa7-bb6e-1768683c458c
Duke, Sue
fd62443f-dcce-4733-8141-eeda2d136864
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7
Bennett, Helen Elizabeth
3e412041-2fcd-4aa7-bb6e-1768683c458c
Duke, Sue
fd62443f-dcce-4733-8141-eeda2d136864
Richardson, Alison
3db30680-aa47-43a5-b54d-62d10ece17b7

Bennett, Helen Elizabeth, Duke, Sue and Richardson, Alison (2022) Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences. BMJ Supportive & Palliative Care, 1 - 23, [003544]. (doi:10.1136/bmjspcare-2022-003544).

Record type: Review

Abstract

Background: Advance care planning is considered best practice for children and young people with life-limiting conditions but there is limited evidence how parents' perceive, understand and engage with the process. Aim: To understand parents' experience of advance care planning for a child or young person with a life-limiting condition. Design: Scoping review, theoretically informed by Family Sense of Coherence. Parents' experience was conceptualised in terms of meaningfulness, comprehensibility and manageability. Data sources: Electronic databases Medline, CINAHL and PyschINFO were searched for studies published between 1990 and 2021, using MeSH and broad-base terms. Results: 150 citations were identified and screened; 15 studies were included: qualitative (n=10), survey (n=3) and participatory research (n=2). Parents' experience of advance care planning was contextualised by their family values and beliefs, needs and goals and the day-to-day impact of caring for their child and family. They valued conversations, which helped them to maximise their child's quality of life and minimise their suffering. They preferred flexible, rather than definitive decisions about end-of-life care and treatment. Conclusions: Advance care planning which solely focuses on treatment decisions is at odds with parents' concerns about the current and future impact of illness on their child and family. Parents want advance care planning for their child to reflect what matters to them as a family. Future longitudinal and comparative studies are needed to understand the influence of advance care planning on parental decision-making over time and how social, cultural and contextual nuances influence parental experience.

Text
Paediatric advance care planning in life-limiting conditions: scoping review of parent experiences - Accepted Manuscript
Restricted to Repository staff only until 16 May 2023.
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More information

Accepted/In Press date: 16 May 2022
e-pub ahead of print date: 3 June 2022
Published date: 3 June 2022
Additional Information: Publisher Copyright: © Author(s) (or their employer(s)) 2022. No commercial re-use. See rights and permissions. Published by BMJ.
Keywords: end of life care, paediatrics, terminal care

Identifiers

Local EPrints ID: 467919
URI: http://eprints.soton.ac.uk/id/eprint/467919
ISSN: 2045-435X
PURE UUID: eeb0b7fb-ee4a-479f-b5df-3f0e12757a6f
ORCID for Alison Richardson: ORCID iD orcid.org/0000-0003-3127-5755

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Date deposited: 25 Jul 2022 16:49
Last modified: 26 Jul 2022 01:43

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Contributors

Author: Helen Elizabeth Bennett
Author: Sue Duke

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