Feeding Experiences Among Caregivers of Children With Down Syndrome in Rwanda: A Qualitative Exploratory Study.

BACKGROUND AND AIMS: Down syndrome (DS) affects approximately 1 in 700 to 1000 live births globally. Children with DS often face feeding difficulties that arise from low muscle tone and oral-motor dysfunction, making complementary feeding initiation particularly challenging. Despite the role of caregivers in addressing these challenges, research on their feeding patterns in low-resource settings like Rwanda is scarce. Therefore, we aimed at exploring the feeding patterns of caregivers of children with DS in Rwanda.

METHODS

We employed a qualitative exploratory design involving 34 caregivers from four hospitals. Participants were recruited through convenience sampling. Twenty-eight people participated in focus group discussions (FGDs), while six took part in in-depth interviews (IDIs). The level of saturation determined the number of FGDs and IDIs. Informed consent was obtained before participation, and data collectors were granted permission to audio-record the interviews. The collected data were subsequently transcribed and analyzed thematically.

RESULTS

Caregivers reported different developmental delays in children with DS, affecting timely initiation and progression of complementary feeding. Feeding challenges were more pronounced in children with DS compared to those without, with delays in food introduction and age-related changes in food consistency. Financial constraints and anatomical anomalies further contributed to difficulties in adequately feeding children with DS. Participants reported receiving necessary support for caring for their children from local authorities, healthcare facilities, and family members. However, some participants reported that male partners did not provide adequate support in caring for their children, with some husbands even abandoning the household following the diagnosis of DS.

CONCLUSION

Caregivers of children with DS indicated that these children have developmental delays that negatively impact their feeding. They emphasized that financial issues and their anatomical anomalies contribute to feeding difficulties. Many participants also noted that insufficient support from male partners hinders their ability to provide proper nutrition.