Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review.

Journal of applied research in intellectual disabilities : JARID Pub Date : 2025-01-01 DOI:10.1111/jar.70005

Macey Barratt, Peter Lewis, Natalie Duckworth, Natasha Jojo, Viktorija Malecka, Signe Tomsone, Dita Rituma, Nathan J Wilson

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Abstract

Background: Parents of children with moderate to profound intellectual disabilities play a crucial role in providing direct care but often demonstrate heightened parental stress and reduced quality of life. This review explores perceived quality of life from the experiences of parents when caring for young and adult children.

Method: A qualitative systematic review following Joanna Briggs Institute meta-aggregation approach has been completed and reported according to PRISMA guidelines.

Findings: Seventeen qualitative studies were included. Three synthesised findings were identified: 'Challenges and rewards of being a parent carer', 'The real cost of caregiver burden' and 'Surrendering self for duty - the mothers role'.

Conclusion: Parents of children with moderate to profound intellectual disabilities reported diminished quality of life for themselves and their families, experiencing increased physical and mental health issues associated with caregiving burdens. Future research is needed that determine what effective support systems and interventions are needed to alleviate parental caregiver burden.

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