Self-perceived stigma in young people with sickle cell disease: associations with psychosocial distress

Background: Sickle cell disorders (SCD) are serious genetic blood conditions affecting mainly people of Black African origin. The disease is associated with serious physical complications and some affected persons have increased psychological difficulties. Self-perceived stigma is a putative risk factor for psychological distress in SCD but this had not been studied. Aim: The primary aim is to estimate the prevalence of self-perceived stigma in young people with SCD and to explore its associations with psychosocial and illness variables. A secondary aim is to explore associations of other measures of psychological adjustment with illness and social indicators. Methodology: Cross-sectional questionnaire survey of 93 young people with SCD aged 10-19 years (Mean 14 years). Questions on self-perceived distancing by others were used to assess stigma. Psychological difficulty was assessed with self-report Strengths and Difficulties Questionnaire (SDQ), Depressive symptoms were measured with the Short Mood and Feelings Questionnaire, self-esteem was assessed with the Rosenberg Self-Esteem Scale, and Family function was measured with the Family Assessment Device. Results: The respondents were evenly split in gender and almost all were of Black ethnicity (95%). However, they had better socioeconomic profile compared with average black families in the UK. Only 15% had self-perceived stigma. Consistent with stigma theory, frequent ward admissions (i.e. measure of disruptiveness) and presence of leg ulcer (i.e. measure of visibility) predicted more self-perceived stigma. Self-perceived stigma in turn predicted more psychological difficulty (Total SDQ score). Psychological symptoms were also associated with poor attitudes towards SCD, and by problematic family function. Conclusion: To my knowledge, this is the first study to show that stigma theory applies to SCD and that self-perceived stigma is a significant predictor of psychological difficulty in this disorder. Thus, alleviating stigma could benefit psychological well-being in SCD