Understanding the experiences of neurodivergent children being raised by their grandmothers to enhance pathways to equitable care and inclusive support systems
 
 
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goGOGOgo, Johannesburg, South Africa
 
 
Popul. Med. 2026;8(Supplement Supplement 1):A2626
 
ABSTRACT
INTRODUCTION:
Grandmothers increasingly assume caregiving responsibilities for their grandchildren. Caring for children with autism spectrum disorder (ASD) or other forms of neurodivergence can be challenging. Despite their central role in daily care, grandmothers' knowledge and experiences regarding neurodevelopmental conditions remain underexplored. Existing 69* research largely centres on parents or professional caregivers, overlooking older women whose caregiving is shaped by age-related factors such as declining mobility, health conditions, and social marginalisation. Given that around 4 million South African children are being raised by grandmothers, understanding how grandmothers navigate diagnosis, treatment pathways, and support systems is essential to identifying structural and interpersonal barriers to equitable care for neurodivergent children.

METHODS:
This study employs a mixed-methods, cross-sectional design. Quantitative data are collected through structured questionnaires that assess knowledge of autism and neurodivergence, attitudes toward diagnosis and intervention, perceptions of stigma, and awareness of available treatment and support services. Qualitative data are generated through in-depth, semi-structured interviews that explore lived experiences, caregiving burdens, coping strategies, and barriers to accessing health, education, and social services. Participants include grandmothers who are primary or co-caregivers to neurodivergent children. Data are analysed using descriptive statistics and thematic analysis, with particular attention to the interaction between age, mobility constraints, and service accessibility.

RESULTS:
It is anticipated that findings will reveal uneven and often limited knowledge of autism and neurodivergence among grandmothers, shaped largely by constrained access to formal information, skilled personnel, and evidence-based resources. Further, it is anticipated that referral pathways for diagnosis, therapy, and educational support are poorly understood, fragmented, or difficult to navigate.

CONCLUSIONS:
Grandmothers play a critical yet under-recognised role in the care of neurodivergent children. Interventions and service models must intentionally account for age, mobility, and caregiver burden to improve access to treatment pathways and support both caregivers and children more effectively.
eISSN:2654-1459
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