Illness Identity in Adolescents and Emerging Adults With Type 1 Diabetes: Introducing the Illness Identity Questionnaire

Abstract

OBJECTIVEThe current study examined the utility of a new self-report questionnaire, the Illness Identity Questionnaire (IIQ), which assesses the concept of illness identity, or the degree to which type 1 diabetes is integrated into one's identity. Four illness identity dimensions (engulfment, rejection, acceptance, and enrichment) were validated in adolescents and emerging adults with type 1 diabetes. Associations with psychological and diabetes-specific functioning were assessed. RESEARCH DESIGN AND METHODSA sample of 575 adolescents and emerging adults (14-25 years of age) with type 1 diabetes completed questionnaires on illness identity, psychological functioning, diabetes-related problems, and treatment adherence. Physicians were contacted to collect HbA 1c values from patients' medical records. Confirmatory factor analysis (CFA) was conducted to validate the IIQ. Path analysis with structural equation modeling was used to examine associations between illness identity and psychological and diabetes-specific functioning. RESULTSCFA indicated that the IIQ has a clear factor structure, meaningfully differentiating four illness identity dimensions. Rejection was related to worse treatment adherence and higher HbA 1c values. Engulfment was related to less adaptive psychological functioning and more diabetes-related problems. Acceptance was related to more adaptive psychological functioning, fewer diabetes-related problems, and better treatment adherence. Enrichment was related to more adaptive psychological functioning. CONCLUSIONSThe present findings underscore the importance of the concept of illness identity. A valid and reliable measure, the IIQ, is introduced to measure four illness identity dimensions in individuals with type 1 diabetes. These four illness identity dimensions were uniquely related to psychological and diabetes-specific functioning.Adolescence and emerging adulthood are important developmental periods to establish lifelong routines of diabetes care in individuals with type 1 diabetes (1). To achieve optimal diabetes care routines, adolescents and emerging adults need to incorporate type 1 diabetes management as part of their daily life and, consequently, need to integrate diabetes into their sense of self or identity (2). Identity development constitutes a core developmental task during adolescence (3) that

Illness Identity: A Novel Predictor for Healthcare Use in Adults With Congenital Heart Disease

“…Demographic (eg, age), clinical (eg, disease complexity), and psychological characteristics (eg, depression, anxiety, type D personality) have been shown to be predictors of healthcare use in adults with CHD. Another particularly relevant concept in this regard could be “illness identity,” which is the degree to which a chronic health condition or illness, such as CHD, is integrated into one's identity . Identity can be defined as the degree to which an individual integrates different self‐assets into a coherent sense of self, which guides choices and values in daily life .…”

“…Illness identity generally comprises 4 different states: engulfment, rejection, acceptance, and enrichment . Engulfment captures the degree to which the illness dominates one's identity and daily life.…”

“…High engulfment scores are observed in patients who completely define themselves in terms of their illness . Rejection refers to the degree to which the illness is rejected as part of the patient's identity and is seen as a threat or as unacceptable to the self . Patients with high rejection scores tend to neglect their illness, resulting in suboptimal self‐management and adherence .…”

“…Rejection refers to the degree to which the illness is rejected as part of the patient's identity and is seen as a threat or as unacceptable to the self . Patients with high rejection scores tend to neglect their illness, resulting in suboptimal self‐management and adherence . These former 2 states represent less adaptive forms of illness integration in one's identity.…”

Health care to empower self-care in adolescents with type 1 diabetes mellitus and an immigrant minority background

“…5 Four different illness identity dimensions related to T1DM have been identified. 6 Engulfment and rejection refers to low illness integration where the adolescent’s life situation either is invaded or dominated by the disease or the diabetes is rejected as a part of one’s identity. This may lead to neglecting self-care.…”