Illness Identity in Symptomatic Adults with Sickle Cell Disease: Preliminary Findings and Considerations

Illness identity, or how an individual integrates their disease into their sense of self, is an important psychological concept for medical populations. According to one model, there are four proposed dimensions of illness identity: Acceptance, Rejection, Enrichment, and Engulfment. Acceptance and Enrichment describe an individual's ability to embrace their illness and regard it as a source of positive meaning-making, while Rejection and Engulfment describe an individual's inclination to disregard or be preoccupied by their illness in unhelpful ways. This study aimed to describe illness identity in a sample of adults with symptomatic sickle cell disease (SCD) and examine how domains of illness identity correlate with physical and mental health variables. Forty-six adults with symptomatic SCD preparing to undergo nonmyeloablative hematopoietic transplants completed a baseline evaluation that included the Illness Identity Questionnaire (IIQ) and measures of depression, anxiety, fatigue, sleep disturbance, physical functioning, and pain. Levels of Enrichment were significantly higher than other dimensions of illness identity (Acceptance, Rejection, and Engulfment). Engulfment scores were positively correlated with sleep disturbance and pain, while Rejection scores were positively correlated with depression and negatively correlated with pain. Results suggest that illness identity is nuanced in adults with SCD. Clinicians and researchers should explore how psychosocial interventions can promote Enrichment and reduce Engulfment.