Evidence map›Paper›PMID 40726295›Full record

ArticleHealth expectations : an international journal of public participation in health care and health policy2025

What Are the Important Health and Well-Being Outcome Dimensions for Parent Carers of Disabled Children? A Qualitative Study.

Caomhán McGlinchey, Phillip Harniess, Aleksandra J Borek, Alice Garrood, Annabel McDonald, Fleur Boyle, Stuart Logan, Christopher Morris

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In one paragraph

Article in Health expectations : an international journal of public participation in health care and health policy, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
–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

1 citing paper in PubMed.

  1. Article
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

8 authors.

Caomhán McGlincheyPeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0001-6317-302X
Phillip HarniessPeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0003-3609-7556
Aleksandra J BorekNuffield Department of Primary Care Health Sciences, Medical Sciences Division, University of Oxford, Oxford, UK.ORCID 0000-0001-6029-5291
Alice GarroodPeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0001-5379-5888
Annabel McDonaldPeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0003-3538-7519
Fleur BoylePeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0001-7156-061X
Stuart LoganPeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0002-9279-261X
Christopher MorrisPeninsula Childhood Disability Research Unit (PenCRU), University of Exeter Medical School, University of Exeter, Exeter, UK.ORCID 0000-0002-9916-507X

Funding

This study was funded by the NIHR Programme Grants for Applied Health Research through a Programme Development Grant (NIHR204583) and supported by the NIHR ARC Southwest Peninsula (known as PenARC). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
6 · The paper itself

Abstract

backgroundPatient-reported outcome measures (PROMs) are used to evaluate the effectiveness of interventions, particularly for subjective health states such as well-being. A parent carer is an adult primary caregiver for a child with a disability. Parent carers are at risk of poorer mental and physical health; targeted health promotion interventions are being developed, requiring evaluation. This study aimed to identify the important health and well-being outcomes for parent carers for evaluating parent carer-focused interventions.

methodsWe recruited parents of children with special educational needs and disabilities living in England. Participants took part in individual, semi-structured interviews via video in two parts. First, participants were asked open-ended questions about health and well-being; second, there was an elicitation exercise, in which the interviewees were asked to consider the aspects of health assessed by the Warwick-Edinburgh Mental Wellbeing Scale (WEMWBS). Verbatim transcripts were analysed in two stages. Initially, data were analysed inductively, taking a thematic analysis approach. Subsequently, the data were analysed deductively with reference to a comprehensive framework of well-being composed of 6 domains and 196 dimensions of well-being.

resultsThirty parent carers participated. We found support for diverse dimensions across all six well-being domains. Eighteen dimensions were perceived to be of greater importance for parent carers: 'stress reaction', 'anxiety/depression', 'acceptance', 'autonomy', 'self-esteem', 'cognition', 'achievement', 'interests/hobbies', 'learning', 'need for relatedness', 'rest', 'sleep', 'physical exercise', 'life purpose and satisfaction', 'community wellbeing', 'status', 'financial situation' and 'future security'. WEMWBS items focus on positive aspects of mental health. Not measuring reduction in 'negative' well-being dimensions risks missing important changes.

conclusionsAll six domains of health and well-being were relevant to parent carers. However, some dimensions were more significant for the well-being of parent carers, and these dimensions should be captured when evaluating their health and well-being outcomes. PATIENT OR PUBLIC CONTRIBUTION: Parent carers were involved in all aspects of the research, including research aims, recruitment and sampling, data collection and analysis, and dissemination.

Indexed as

CaregiversChildren with DisabilitiesHealth StatusParentsAdolescentAdultChildChild, PreschoolEnglandFemaleHumansInterviews as TopicMaleMental HealthMiddle AgedPatient Reported Outcome Measureshealthparent carerspatient‐reported outcome measuresPROMqualitativewell‐being

Identifiers

PMID40726295
PMCPMC12304521

What OpenQuestion holds

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LicenceCC BY
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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.