|dc.description.abstract||Sickle cell disease (SCD) and depression are each major public health issues globally. Nigeria currently has the largest proportion of people with SCD worldwide, with up to 150,000 annual births. This study highlights the limitations of previous studies, which only utilize the biomedical model in explaining SCD, and which pay insufficient attention to the lived experiences of people with SCD. Extant literature reports strong associations between SCD and depression, and locates the problem ‘only’ in terms of disease severity, levels of service utilization or alleged psychological maladjustment to SCD condition. Biomedical research tends to treat stigma as a predicament that automatically correlates with SCD.
Data collected was guided by a modified three-staged theoretical framework derived from Arthur Kleinman, with the use of questionnaires (incorporating Patient Health Questionnaire) to describe depression in persons with SCD; 15 in-depth interviews to explore the illness experience of SCD, and a series of six focus groups to examine depression and stigma in SCD as a form of ‘societal sickness’. In the first stage, questionnaires were administered to 103 outpatients at an SCD clinic in Lagos, Nigeria, and findings revealed an association of depression with age, and severity of SCD as indicated by symptoms such as leg ulcers. The first stage enabled those with moderate depression to be identified and invited into the subsequent stages (two and three) of the research.
In the second stage, fifteen in-depth interviews with adults living with SCD were conducted and analysed using interpretive phenomenological analysis (IPA), also drawing on the influences of Herbert Blumer and Erving Goffman. Testimonies suggested that people with SCD face overwhelmingly negative criticisms from a wide range of significant others, including close family members; that the discrimination they face arises not from their condition per se but from the societal norms and expectation that they are assumed to break; and that they themselves identify pathways from the negative experience they endure to their own depression and mental distress.
In the third stage, a series of three focus groups, each with five participants, found that people with SCD began to reject negative labels, identify challenges in their own terms, gain a sense of confidence and identity from their participation in groups, and began to identify social barriers to their full participation in society that they wished to challenge.
The overall findings of the research suggest that by coming together in groups, people with SCD themselves suggest that rigorously researched social interventions may be considered an important adjunct to medical interventions in improving the lives of those living with SCD in Nigeria and throughout sub-Saharan Africa.||en