Caregiver agency in supporting children with deafblindness

This study explored how caregivers exercise agency in supporting their children's academic, social, and independent development, alongside their overall well-being in South Africa.

A secondary analysis of data from semi-structured interviews was conducted with seven purposively selected caregivers of children who are deafblind. Data were analysed using reflexive thematic analysis, guided by Braun and Clarke's framework.

Three main themes emerged from the data. First, caregivers as advocates for their children's future captures how caregivers actively prioritised education, nurtured their children's unique talents, and encouraged play and skill development to foster independence and self-expression. Second, facilitating independence through environmental and sensory adaptation reflects how caregivers structured routines and familiar environments to support behavioural and sensory development. Third, fostering well-being through social and physical engagement highlights caregivers' efforts to promote social inclusion, physical activity, and holistic well-being. Across these themes, caregivers' agency was accompanied by considerable personal cost, including sustained time, vigilance, and sacrifice.

The study highlights parental agency as vital in managing deafblindness challenges while highlighting the psychological toll on caregivers. It calls for enhanced systemic support, including specialised communication training, mental health resources, and inclusive education policies to strengthen caregiver resilience and improve outcomes for children with deafblindness.