Keeping all options open

Parents’ approaches to advance care planning

Bibliographic Data

ID19507232
AuthorsEmma Beecham (0000-0002-1832-0286, Louis Dundas Centre for Children's Palliative Care Institute of Child Health University College London London UK), Linda Oostendorp (0000-0001-5544-2672, Louis Dundas Centre for Children's Palliative Care Institute of Child Health University College London London UK), Joanna Crocker (0000-0002-8223-0349, Louis Dundas Centre for Children's Palliative Care Institute of Child Health University College London London UK), Paula Kelly (0000-0002-5457-5331, Louis Dundas Centre for Children's Palliative Care Institute of Child Health University College London London UK), Andrew Dinsdale (Louis Dundas Centre for Children's Palliative Care Great Ormond Street Hospital for Children NHS Foundation Trust London UK), June Hemsley (0000-0001-6457-8651, Louis Dundas Centre for Children's Palliative Care Great Ormond Street Hospital for Children NHS Foundation Trust London UK), Jessica Russell (0000-0003-3194-412X, Louis Dundas Centre for Children's Palliative Care Institute of Child Health University College London London UK), Louise Jones (0000-0001-9901-4135, Marie Curie Palliative Care Research Department Division of Psychiatry University College London London UK), Myra Bluebond‐langner (0000-0001-9281-5431, Louis Dundas Centre for Children's Palliative Care Institute of Child Health University College London London UK, corresponding author)
Year2017
Volume20
Issue4
Pages675-684
Publication date2017-08-01
Peer ReviewedYes
Open AccessYes
TypeARTICLE
VenueHealth Expectations (JOURNAL)
Journal identifiersISSN: 1369-6513 • E-ISSN: 1369-7625
PublisherWiley (PUBLISHER • GB)
DOI10.1111/hex.12500
PMID27670148
OpenAlexW2527293369
LanguageEN
Citations received2
References cited29

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

Advance care planning · Grounded theory · Limiting · Palliative care · Qualitative research · Sociology · Childhood Cancer Survivors' Quality of Life · Ethics and Legal Issues in Pediatric Healthcare · Medicine · Nursing · Palliative Care and End-of-Life Issues · Psychology

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