Evidence map›Paper›PMID 27670148›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2017

Keeping all options open: Parents' approaches to advance care planning.

Emma Beecham, Linda Oostendorp, Joanna Crocker, Paula Kelly, Andrew Dinsdale, June Hemsley, Jessica Russell, Louise Jones, Myra Bluebond-Langner

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 5 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
26citing papers in PubMed, 5 pooled it
6.5field-weighted citation impact, top 4% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

26 citing papers in PubMed, 5 syntheses or guidelines pooled it, 50 citations in OpenAlex.

  1. Pooled it
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  6. Article
  7. "The American journal of hospice & palliative care · 2025
    Article
  8. Article
  9. Article
  10. Children's complex health: Maternal experiences of care and decision making.Journal of child health care : for professionals working with children in the hospital and community · 2024
    Article
  11. Article
  12. Article
  13. Review
  14. Review
  15. Pediatric Advance Care Planning: A Scoping Review.Children (Basel, Switzerland) · 2023
    Article
  16. Article
  17. Article
  18. Article
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 4 institutions in 3 countries.

Emma BeechamLouis Dundas Centre for Children's Palliative Care, Institute of Child Health, University College London, London, UK.
Linda OostendorpLouis Dundas Centre for Children's Palliative Care, Institute of Child Health, University College London, London, UK.
Joanna CrockerLouis Dundas Centre for Children's Palliative Care, Institute of Child Health, University College London, London, UK.ORCID 0000-0002-8223-0349
Paula KellyLouis Dundas Centre for Children's Palliative Care, Institute of Child Health, University College London, London, UK.
Andrew DinsdaleLouis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK.
June HemsleyLouis Dundas Centre for Children's Palliative Care, Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK.
Jessica RussellLouis Dundas Centre for Children's Palliative Care, Institute of Child Health, University College London, London, UK.
Louise JonesMarie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK.
Myra Bluebond-LangnerLouis Dundas Centre for Children's Palliative Care, Institute of Child Health, University College London, London, UK.
Institute of Child Health · INGreat Ormond Street Hospital for Children NHS Foundation Trust · GBRutgers, The State University of New Jersey · USUniversity College London · GB

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundEarly 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.

objectiveTo investigate how parents of children and young people with LLCs approach and experience ACP.

methodsOpen-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.

resultsParents 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.

Indexed as

Advance Care PlanningDecision MakingAdolescentChildChild, PreschoolFemaleGrounded TheoryHumansInfantInfant, NewbornInterviews as TopicMalePalliative CareParentsTerminally Illadvance care planningchildren and young peopleinterviewslife-limiting conditionslife-threatening illnessesparents

Identifiers

PMID27670148
PMCPMC5512998
OpenAlexW2527293369

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.