Evidence map›Paper›PMID 33199300›Full record

ArticleArchives of disease in childhood2021

Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families: a longitudinal qualitative investigation.

Sarah Mitchell, Anne-Marie Slowther, Jane Coad, Jeremy Dale

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Archives of disease in childhood, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
21citing papers in PubMed, 1 pooled it
–field-weighted citation impact
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

21 citing papers in PubMed, 1 synthesis or guideline pooled it.

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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

4 authors.

Sarah MitchellAcademic Unit of Primary Care, University of Warwick, Coventry, UK sarah.j.mitchell@warwick.ac.uk.ORCID 0000-0002-1477-7860
Anne-Marie SlowtherWarwick Medical School, University of Warwick, Coventry, Warwickshire, UK.
Jane CoadSchool of Health Sciences, University of Nottingham, Nottingham, UK.
Jeremy DaleAcademic Unit of Primary Care, University of Warwick, Coventry, UK.

Funding

Department of Health DRF-2014-07-065
6 · The paper itself

Abstract

objectivesTo understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.

designLongitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.

settingCommunity and hospital settings in the West Midlands, UK.

participantsChildren with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.

findings31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of 'fighting' a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child's condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family's emotional burden.

conclusionsThere is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.

Indexed as

AdolescentChildChild, PreschoolCritical IllnessFamilyHealth PersonnelHealth Services AccessibilityHumansLongitudinal StudiesMalePalliative CareProfessional-Patient RelationsQualitative Researchhealth services researchmortalitypalliative carequalitative research

Identifiers

PMID33199300
PMCPMC8142456

What OpenQuestion holds

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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.