Structural barriers to coping with type 1 diabetes mellitus in Ghana: experiences of diabetic youth and their families.

OBJECTIVE To explore the structural barriers faced by families coping with type 1 diabetes mellitus (T1DM) in Ghana, and to provide insight for policy development. METHODS Qualitative study conducted with families with a child with T1DM, receiving care in the greater Accra area. Total of 17 individuals were interviewed using individual and dyadic approaches: 7 youth with T1DM, 9 parents of children with T1DM, and one medical doctor. FINDINGS 5 key barriers emerged from the data: primary care, schools, financial burden, lack of formal support, and access to information. Participants expressed concern over the misdiagnosis of T1DM at primary care facilities, resulting in some of the children going into a diabetic coma before receiving proper care. Children and parents noted discrimination and poor care at school. Financial burden was due to the high costs of medications and appliances needed for proper diabetes management. A lack of formal support was credited by participants to be the result of the lethargy of advocacy groups or resource centers. Finally, there was a lack of readily available and accessible information for children and parents on T1DM. CONCLUSION Awareness of T1DM needs to be increased, by incorporating lessons on recognition into already existing campaigns for type 2 diabetes mellitus (T2DM). Schools need to be more engaged with their responsibility for children with diabetes. Pressuring policy makers and pharmaceutical companies to make diabetes supplies more affordable and accessible could ease the financial burden. Social support networks need to be explored and strengthened. Study into the experiences of youth with T1DM in rural settings and other parts of Ghana, as well as, youth from low socioeconomic backgrounds is necessary.