Leisure, Employment, Community Participation, and Quality of Life in Primary Caregivers of Autistic Children: A Qualitative Study.
Gemma Davy, Josephine Barbaro, Katy Unwin and 1 others
PMID 37171763WHAT IT FOUND
Mothers of autistic school-aged children described their quality of life as limited by the constant need to manage therapies, funding, and school crises.
They identified employment and respite as key to reclaiming time, but navigating services often added to their workload.
Key findings
01Caregivers reported that managing National Disability Insurance Scheme (NDIS) funding and coordinating therapies felt like a part- or full-time job, significantly reducing time for self-care.
02Being on standby for unexpected school or care issues prevented many parents from committing to regular employment or leisure activities.
03Access to funded support workers and trusted family respite were identified as the main facilitators that allowed parents to engage in meaningful activities.
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 sample consisted only of mothers, excluding fathers and secondary caregivers. Data collection occurred during the COVID-19 pandemic, which may have influenced experiences of participation and support access. Most children were diagnosed early, potentially limiting generalisability to families with later diagnoses. The majority of children were male, so experiences of caregivers of autistic girls are underrepresented.
Declared interests
The study was funded by La Trobe University. The authors declared no other conflicts of interest.
The easy way to misread this
Do not interpret the link between participation and quality of life as evidence that increasing leisure time alone will improve outcomes. The study highlights that access to meaningful activities is constrained by systemic barriers like funding administration and lack of respite, not just personal time management.