Feeding Stressors and Resources Used by Caregivers of Children with Down Syndrome: A Qualitative Analysis

Challenging eating behaviors or feeding difficulties, commonly displayed in children with Down syndrome (DS), may amplify perceived stress in caregivers. If caregivers lack resources on how to accommodate the needs of the child with DS, they may find feeding the child stressful and resort to negative coping strategies. The aim of this study was to understand the feeding stressors, resources, and coping strategies used by caregivers of children with DS. A qualitative analysis of interview transcripts was undertaken, framed around the Transactional Model of Stress and Coping. Between September to November 2021, fifteen caregivers of children (aged 2 through 6 years) with DS, were recruited from 5 states located in the Southeast, Southwest, and West regions of the United States. Interviews were audio-recorded, transcribed verbatim, and analyzed using deductive thematic analysis and content analysis approaches. Thirteen caregivers reported increased stress around feeding the child with DS. Stressors identified included concern about adequacy of intake and challenges associated with feeding difficulties. Stress related to feeding was higher among caregivers whose child was learning a new feeding skill or in a transitional phase of feeding. Caregivers used both professional and interpersonal resources in addition to problem- and emotion-based coping strategies. Caregivers identified feeding as a stressful event with higher stress reported during transitional phases of feeding. Caregivers reported that speech, occupational, and physical therapists were beneficial resources to provide support for optimizing nutrition and skill development. These findings suggest that caregiver access to therapists and registered dietitian nutritionists is warranted.