What aspects of health and wellbeing are most important to parent carers of children with disabilities?

• Published in: Health expectations : an international journal of public participation in health care and health policy 2024-06, Vol.27 (3), p.e14085-n/a
• Main Authors: McGlinchey, Caomhan, Harniess, Phillip, Borek, Aleksandra J., Garrood, Alice, McDonald, Annabel, Boyle, Fleur, Logan, Stuart, Morris, Christopher
• Format: Article
• Language: English
• Subjects: Adolescent; Adult; Caregivers; Caregivers - psychology; Challenges; Child; Children; Children with disabilities; Citizen participation; Clinical outcomes; Connectedness; Design; Disabilities; Disabled Children; Educational needs; Electronic mail systems; Families & family life; Female; health; Health problems; Health promotion; Health Status; Humans; Identity; Intervention; Interviews; Interviews as Topic; Male; Meetings; mental health; Middle Aged; Original; outcomes; parent carers; Parent participation; Parental behavior; Parents; Parents & parenting; Parents - psychology; Peers; Psychological needs; Public involvement; Qualitative Research; Researchers; Self determination; Social interactions; Social isolation; Social Support; Special needs children; Teams; Time use; Well being; wellbeing
• ISSN: 1369-6513; 1369-7625; 1369-7625
• DOI: 10.1111/hex.14085

Introduction 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. Methods 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. Results 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. Conclusion 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. Patient or Public Contribution Our team carries out patient and public involvement (PPI) through a Fam