Perspectives of Parents With Type 1 Diabetes: Role of Children in Self-Management and Support.

Abstract

The purpose of this study was to examine parents' perceptions of the role children play in their type 1 diabetes (T1DM) care. Family members are a resource to support T1DM self-management, but how children are involved in their parents' diabetes has not been well explored. Parents with T1DM (n = 85) and a subset of their romantic partners (n = 55) participated in interviews during which they described their children's knowledge of and involvement in diabetes care. Interviews were transcribed, responses coded/tallied, and themes identified. All parents reported that children knew of their diabetes, which they learned about progressively from a young age. Most parents reported children to be accepting and understanding of the ways that diabetes affected their family experiences (eg, pause to treat low blood glucose). When asked about specific support, parents rated "making parent feel better about diabetes" as the most frequently occurring behavior. Some parents felt that children, particularly younger ones, occasionally detracted from T1DM management, but this was usually expected and considered transient. Regardless of child age, many parents did not want diabetes to burden children and limited their involvement. Both parents with T1DM and partners requested resources to enhance child awareness and preparedness to support diabetes. Respondents, particularly partners, were also interested in learning how to communicate better as a family and share perspectives on how diabetes affects individual family members. Diabetes care and education specialists should consider developmentally and relationally appropriate ways to engage children of parents with T1DM in education and self-management.