Maternal Experiences Related to Food and Feeding Young Children with Down Syndrome

Abstract

Background: Down syndrome is the most common cause of intellectual disability in the United States. Individuals with Down syndrome can live long, healthy lives, but health promotion is essential due to increased risks for feeding and swallowing problems as well as the development of overweight/obesity. Feeding children, which is an aspect of family caregiving work, is an important health consideration because feeding experiences during early childhood are essential in setting the foundation for future eating habits. However, there is limited literature on feeding children with Down syndrome.Purpose: The purpose of this study was to gain in-depth understanding into the experiences of mothers of young children with Down syndrome ages 3-10 years related to food and feeding their children. Methods: This was a virtual, qualitative, descriptive study guided by a theoretical framework integrating an ecological model with feminist theory. Twenty-nine mothers of children with Down syndrome were recruited from across the United States and participated in semi-structured interviews with photo-elicitation. Data were analyzed with thematic analysis. Results: Three major themes were identified: 1) the maternal role in feeding within family and societal contexts, 2) mothers’ experiences interacting with healthcare providers related to feeding, and 3) personal and social roles of food for mothers and children within environmental contexts. Key findings include that mothers engage in complex caregiving work to feed their children, advocate for their children in healthcare settings, and view feeding as having personal, social, and emotional meaning within their families. Conclusion: Findings from this study have implications for future research, clinical practice, and policy to promote the health of children with Down syndrome and their families.