Caregivers' voices: From the world of autism spectrum disorder.
Patience M M Dira, Rorisang J Machailo, Suegnet Scholtz
PMID 39099291WHAT IT FOUND
Caregivers of children with autism described not understanding the child's behaviour as communication, learning the child's own signals, and carrying stigma, financial strain and lost self-care.
Clinicians can ask about these barriers when supporting these families.
Key findings
01Caregivers described difficulty understanding their child's behavioural and social communication, and said children might use aggression, tantrums, sign language or pointing to make needs known.
02Caregivers reported six experience subthemes: understanding behavioural and social communication, increased responsibility with decreased self-care and freedom, emotional taxing, social discrimination and stigma, financial implications, and access to educational schools.
03Caregivers reported coping by learning their child's communication patterns and receiving healthcare support from psychologists, speech therapists or occupational therapists.
STILL TO COME
How it was doneWhat they foundWhat it means for OTsWhat it means for SLPs
Read the rest of this summary
You get three full summaries a month, free, and we do not ask for a card. Search, the TL;DRs and your library stay unlimited either way.
What it does not show
Only ten caregivers were interviewed, nine mothers and one father, so the findings cannot represent fathers, other caregiver types or larger populations. Participants were recruited from caregivers who brought their children to one public referral hospital in North West province, so families not using that hospital are not represented. The first author is a parent of a child with autism spectrum disorder, which may introduce bias despite member checking and a reflective journal. The study did not measure severity, functional status or child outcomes, and it did not test whether any support or therapy improves caregiver burden. Findings are qualitative themes, not effects. They describe what caregivers said, not what works.
Declared interests
The study was initially self-funded and later received bursary funding after data collection. Funding came from North-West University postgraduate bursaries and a University Capacity Development Grant. No direct payments or incentives were provided to participants.
The easy way to misread this
Do not read this as evidence that speech therapy, occupational therapy, support groups or government grants reduce caregiver stress. The study interviewed ten caregivers about their experiences and did not test any intervention or measure outcomes.