M08C - Diabetes Education Needs When Multiple Family Members Have Type 1 Diabetes

Key Takeaways of Your Research: 1. Formal diabetes education is adequate for the first family member who is diagnosed with type 1 diabetes, but inadequate for subsequent family members. 2. Mothers play a critical role as the key resource for supporting those with type 1 diabetes; mothers reported increased mental load, responsibilities and worsened health as a result. 3. There are unique and compounded stressors when more than 1 person in the family has type 1 diabetes.

Background/Purpose: Most type 1 diabetes research focuses on one member with type 1 diabetes (T1D) and excludes participants if other family members have diabetes. Relatives of someone with T1D is 15 times more likely to develop T1D than the general population. Having a family member with T1D may influence diabetes identification, education, and coping. Research Hypothesis and/or Research Questions and Specific

Aims: The goal of this study was to understand 1) how families with multiple members with T1D use family history to shape early detection of symptoms and coping, 2) how support was provided amongst family members, and 3) stressors that may coincide with having multiple family members living with T1D. Methods/Methodology: Families where more than 1 person was living with T1D were recruited. Family members living in the home age 10 years or older completed a survey, then were individually interviewed using a semi-structured interview guide. Data was analyzed using grounded theory, looking across family members with and without T1D, family roles, and between family units until emergent themes were identified.

Results: Five families (N=21, 10 living with T1D) participated in this study. Emergent themes included 1) Initial diagnosis and how family history was crucial for early diagnosis and lack of formal education in subsequent family members; 2) mother as the key resource for family members with T1D, which increased her mental load, responsibilities and worsened health; 3) family support and cohesion where family members with T1D were supportive T1D experts, and T1D strengthened overall family cohesion; and 4) family stressors, which included financial and access burden, frustrations among siblings without T1D, glucose levels interfering with family activities, micromanagement of others, and public misconceptions. Conclusions (Impact on Diabetes Care and Education). A T1D diagnosis in one family member resulted in several benefits to the subsequent person diagnosed with T1D. Formal diabetes education in subsequent family members was limited, with family members indicating that they would have benefitted from additional education. Family members with T1D were closer to each other because of the support they could provide each other, even though they faced a variety of stressors. Source of Funding for this Research: This research was funded by the Driving Out Diabetes Initiative and the Diabetes and Metabolism Research Center at the University of Utah.