Macey Barratt, Peter Lewis, Natalie Duckworth, Natasha Jojo, Viktorija Malecka, Signe Tomsone, Dita Rituma, Nathan J. Wilson
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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’.</p>\n </section>\n \n <section>\n \n <h3> Conclusion</h3>\n \n <p>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.</p>\n </section>\n </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 1","pages":""},"PeriodicalIF":2.1000,"publicationDate":"2025-01-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11724350/pdf/","citationCount":"0","resultStr":"{\"title\":\"Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review\",\"authors\":\"Macey Barratt, Peter Lewis, Natalie Duckworth, Natasha Jojo, Viktorija Malecka, Signe Tomsone, Dita Rituma, Nathan J. 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Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review
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.
期刊介绍：
JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.
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