Illness identity and social relations in adolescents and emerging adults with type 1 diabetes

Introduction: Identity formation constitute a core developmental construct during adolescence and emerging adulthood. Adolescences and emerging adults (young people) with type 1 diabetes (T1D) are confronted with the challenging task of integrating diabetes into their identity – a process originally conceptualized as ‘illness identity’. Illness identity can be adaptive (i.e. as ‘acceptance’ and ‘enrichment’) or maladaptive (i.e. ‘rejection and ‘engulfment’). In recent studies, illness identity is demonstrated to be a significant factor in how young people manage their diabetes, and to their diabetes outcomes in terms of treatment adherence, HbA1c, and psychological functioning. This calls for efforts to facilitate adaptive illness identity development in young people with T1D. To reach this goal, research need to understand and target the factors that determine illness identity and provide further evidence for its implications for clinical outcomes.

Objectives: The study objectives were twofold; 1) to explore the sociodemographic (age, gender, and educational status), clinical (diabetes duration and type of insulin administration), and relational (structural and functional aspects of social relations) determinants of illness identity, and 2) to investigate associations between illness identity and diabetes outcomes (HbA1c, diabetes distress, and quality of life).

Methods: Data were collected through an online survey that included Danish versions of the Illness Identity Questionnaire, the Copenhagen Social Relations Questionnaire, and the 5-item Problem Areas in Diabetes Scale. In March 2020, all individuals with type 1 diabetes between the ages of 15-25 years in Denmark (N=3673) received a survey invitation. Descriptive analysis and multiple regression analysis with adjustment for relevant covariates were conducted on the survey data.
Results: 1176 young people completed the survey (response rate 32%; 60.60% women; mean age 20.43 years; mean diabetes duration 9.73 years). Female gender and age were significantly associated with higher levels of rejection and engulfment and linked to lower levels of acceptance and enrichment. Higher levels of educational status were significantly associated with lower levels of rejection and engulfment, and higher levels of acceptance and enrichment. Being an insulin pump user was associated with lower levels of rejection, and higher levels of acceptance. No associations between diabetes duration and illness identity were found. Lower levels of support (emotional and practical) from parents and partners were associated with higher levels of rejection, and lower levels of acceptance and enrichment. Higher levels of relation strain from parents and partners were associated with higher levels of rejection and engulfment. Lower levels of support friends were associated with higher levels of rejection, and lower levels of acceptance. Maladaptive illness identity states (i.e. rejection and engulfment) were associated with higher diabetes distress and lower quality of life, whereas adaptive illness identity states (i.e. acceptance and enrichment) were linked to lower diabetes distress and higher quality of life. Associations between illness identity and HbA1c is yet to be analysed.

Conclusions: Findings show that illness identity may be affected by gender, educational status, and quality of social relations. Further, findings show that illness identity has an impact on diabetes outcomes. In general, the present findings underscore the importance of adaptive illness integration for young people with T1D.