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

TL;DR

This study identifies key health and well-being dimensions important to parents caring for children with disabilities, to better evaluate interventions targeting these caregivers.

Contribution

The study provides a novel framework of 18 well-being dimensions specific to parent carers of disabled children.

Findings

Eighteen well-being dimensions were identified as particularly important for parent carers.

Not measuring negative well-being dimensions risks missing important changes in outcomes.

Parent carers were involved in all stages of the research process.

Abstract

Patient‐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.

We 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.

Thirty 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.

All 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.

Parent carers were involved in all aspects of the research, including research aims, recruitment and sampling, data collection and analysis, and dissemination.