Parental Experiences of Quality of Life When Caring for Their Children With Intellectual Disability: A Meta-Aggregation Systematic Review.
Macey Barratt, Peter Lewis, Natalie Duckworth and 5 others
PMID 39763193WHAT IT FOUND
Parents of children with moderate to profound intellectual disabilities described caregiving as relentless, causing isolation, financial strain, and health decline.
Mothers bore the heaviest burden, often sacrificing careers and self-care. Support networks and respite were critical for quality of life.
Key findings
01Caregiving demands led to profound emotional burden, including fear for the child's future after the parent's death, guilt, and social isolation due to stigma and lack of accessible environments.
02The time burden of care caused physical exhaustion, sleep deprivation, and neglect of the parent's own health, while also forcing many families to choose between employment and caregiving, leading to financial stress.
03Mothers disproportionately shouldered the primary caregiving role, often surrendering their careers and personal identities due to societal expectations and a lack of shared support from partners or extended family.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The review excluded studies that did not clearly state the level of disability, which may limit generalisability. Most included studies were conducted in Western contexts, potentially limiting the global applicability of the findings, although some non-Western studies were included. The definition of 'parent' was broad, including biological, adoptive, and foster parents, which may obscure differences in support structures or legal responsibilities. Quality assessment did not lead to the exclusion of any studies due to the low number of eligible papers, meaning findings from methodologically weaker studies were included.
Declared interests
The authors declare no conflicts of interest.
The easy way to misread this
Do not interpret the reported 'rewards' or 'personal growth' mentioned in the synthesis as evidence that the caregiving burden is manageable or positive overall. The review concludes that quality of life is diminished rather than enhanced, and the positive aspects were often described alongside significant isolation, health decline, and financial strain.