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 prioritised 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. Young people's views on the implications of fatigue for their health and development were examined. This examination involved perspectives on parental (maternal) care and support. How parents negotiate norms of caring for and parenting a chronically ill child can have social consequences for the child, particularly in adolescence, as they seek autonomy, independence, and self-care. We adopted a constructivist grounded theory approach. Data for the study was gathered from 24 purposively sampled adolescents with SCD in Ghana, with approvals from four research ethics committees. A multi-method approach, combining semi-structured interviews, photography, drawings, and photo-elicitation interviews, was used to generate data to ensure comprehensiveness and credibility. We used reflexivity to determine how our experiences and insights about the phenomenon might have influenced the data collection and analysis. 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 prioritising their ability to conform to gendered expectations over their illness and limitations. By contrast, the boys presented their mothers as prioritising 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.