How a child's gender mediates maternal care and expectations in the fatigue experiences of adolescents with sickle cell disease

Despite the chronicity and biopsychosocial significance of fatigue in sickle cell disease (SCD), it is rarely prioritized in understanding illness experiences and the social consequences of SCD for children, young people and their families. This study examined fatigue's social meaning and significance for young people with SCD. This examination involved perspectives on parental (maternal) care/support. We adopted a constructivist grounded theory approach. Data for the study was gathered from 24 purposively sampled adolescents with SCD in Ghana. A multi-method approach, combining semi-structured and photo-elicitation interviews, was used to generate data to ensure comprehensiveness and credibility. The findings indicated that adolescents with SCD perceived their gender to mediate their mothers’ care and expectations. According to them, their mothers’ interpretations of the significance of SCD for them were dependent on gendered cultural norms. The girls described their mothers as prioritizing their ability to conform to gendered expectations over their illness and limitations. By contrast, the boys presented their mothers as prioritizing their illness over meeting gendered expectations. In conclusion, gendered parenting practices influence adolescents’ social status, sense of self, and ability to pursue independence and self-care. Consequently, cultural (gender) expectations should be considered in parental education and family interventions targeting chronically-ill children.