Caregiver perspectives on feeding and swallowing difficulties in children with developmental disabilities in India

Abstract Background Understanding pediatric feeding and swallowing disorders from the caregiver’s point of view is essential for effective intervention. This understanding can be suitably gained using qualitative methods. Thus, the present study aimed to explore caregiver perspectives on feeding and swallowing difficulties in children with developmental disabilities in India, a low middle-income country. Methods Ten in-depth interviews with Indian caregivers of children (2 to 5 years) with developmental disabilities who had feeding and/or swallowing difficulties were conducted to explore their perspectives on these difficulties. A six-step process for thematic analysis was performed on the transcription of the interviews to arrive at themes. Results Emergent themes included – perceived causes, deficits, mealtime, dealing with food refusals, concerns beyond mealtime, and the impact on the caregiver. Caregivers struggle with long meal durations, oral-preparatory and sensory deficits, initiating meals, food refusal behaviours, food selectivity, and self-feeding. Caregivers resort to force-feeding and using distractions, especially with screens, to deal with mealtimes. Conclusion Caregiver well-being is affected by the presence of feeding deficits, maladaptive behaviours, and concerns about their child’s development. They are necessitated to cope with guilt, societal expectations, participation restrictions, and time constraints that affect their physical, psychological, and social well-being.