What aspects of health and wellbeing are most important to parent carers of children with disabilities?
health
mental health
outcomes
parent carers
parents
wellbeing
Journal
Health expectations : an international journal of public participation in health care and health policy
ISSN: 1369-7625
Titre abrégé: Health Expect
Pays: England
ID NLM: 9815926
Informations de publication
Date de publication:
Jun 2024
Jun 2024
Historique:
revised:
02
05
2024
received:
08
01
2024
accepted:
06
05
2024
medline:
7
6
2024
pubmed:
7
6
2024
entrez:
7
6
2024
Statut:
ppublish
Résumé
Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer-focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important. A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically. Thirty parent carers were interviewed, 19 of whom had experienced a health-promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health-promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self-identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health-promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health-promoting activities of various kinds. Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self-determination theory. Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co-ordinator (A. McD.) who is herself a parent carer. A study-specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co-authored by the team's Family Involvement Co-ordinator (A. McD.).
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e14085Subventions
Organisme : National Institute of Health and Care Research
ID : NIHR204583
Informations de copyright
© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.
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