'I bring her up with love:' Perspectives of caregivers of children with neurodevelopmental delays in western Kenya.
Yi Yan Heng, Amira Nafiseh, Eren Oyungu and 3 others
PMID 35817560WHAT IT FOUND
Caregivers in western Kenya described isolation, financial strain and safety fears as their main challenges.
Despite community stigma, they reported deep love for their children and found critical support and respite through faith and religious organizations.
Key findings
01The most prominent themes were supervision/safety worries, financial hardship, emotional stress and negative community perceptions.
02Caregivers reported high affective stigma (sadness, helplessness) but low behavioural stigma, meaning they did not reduce contact with or care for their children.
03Religious organizations provided essential respite and emotional strength, with over 80% of families attending a church or mosque.
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 study used convenience sampling and included only 16 participants, all living near an urban centre and connected to local chiefs. This may not represent caregivers in more remote or marginalized areas. Data collection occurred during the COVID-19 pandemic, which may have influenced caregivers' experiences of isolation and access to services. The study was qualitative and did not measure clinical outcomes for the children or effectiveness of any interventions.
Declared interests
The authors declared no conflicts of interest or financial disclosures related to this study.
The easy way to misread this
Do not interpret the low behavioural stigma scores as evidence that community stigma is absent. Caregivers reported significant shame and fear of public judgment, but this did not lead them to reduce contact with their children.