Beecham, E;
Oostendorp, L;
Crocker, J;
Kelly, P;
Dinsdale, A;
Hemsley, J;
Russell, J;
... Bluebond-Langner, M; + view all
(2016)
Keeping all options open: Parents' approaches to advance care planning.
Health Expectations
10.1111/hex.12500.
(In press).
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Abstract
BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. OBJECTIVE: To investigate how parents of children and young people with LLCs approach and experience ACP. METHODS: Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made. RESULTS: Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. DISCUSSION: This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely.
| Type: | Article |
|---|---|
| Title: | Keeping all options open: Parents' approaches to advance care planning |
| Open access status: | An open access version is available from UCL Discovery |
| DOI: | 10.1111/hex.12500 |
| Publisher version: | http://dx.doi.org/10.1111/hex.12500 |
| Language: | English |
| Additional information: | Copyright © 2016 The Authors. Health Expectations Published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License (CC BY 4.0) (https://creativecommons.org/licenses/by/4.0/), which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
| Keywords: | advance care planning; children and young people; interviews; life-limiting conditions; life-threatening illnesses; parents |
| UCL classification: | UCL UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Brain Sciences > Division of Psychiatry UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept |
| URI: | https://discovery-pp.ucl.ac.uk/id/eprint/1517654 |
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