This thesis explores the lived experiences of Zambian healthy siblings of individuals with Sickle Cell Disease (SCD). SCD is a multi-system condition known to be one of the world's most common severe monogenic disorders, caused by the inheritance of single gene mutations affecting the shape of blood cells that carry oxygen to all body parts. This chronic disorder presents its own challenges for the diagnosed person (both physically and sociologically). This extends to the rest of the family, thus impacting the lives of family members around the affected individual, including the healthy siblings. Although there are extensive socio-psychological studies on how SCD impacts the quality of life for individuals affected by SCD and their parents, little is known about healthy siblings’ lived experiences in this context in Zambia.

This qualitative research draws on empirical data collected through online semi-structured interviews with a purposive sample of 28 Zambian healthy siblings of individuals with SCD (24 individuals and four focus groups) aged between 12 and 20 years. The methodological approach employed grounded theory through a symbolic interactionist lens, which employed initial data coding and further theoretical integration. Findings have shown that healthy siblings’ self-identities are negotiated through their lived experiences within the family environment where they have a brother or sister with SCD. Their caring roles, shaping their daily lives, are the main aspect of their identities. Further, the healthy siblings’ perceptions of the pain that is experienced by their sister/brother living with SCD are translated into feelings of empathy, guilt and, at times, anxiety. Finally, Zambian cultural values around family practices have been shown to strengthen family bonds and their resilience in dealing with a chronic condition like SCD as a family.

This research seeks to fill the gap in the literature on the lived experiences of Zambian healthy siblings of individuals with SCD, raising awareness on the role healthy siblings play within the family dynamics and overall function. Importantly, within the Zambian context, this research has the potential to inform policies and practices, contributing to a more comprehensive approach to supporting families affected by chronic conditions such as SCD at both individual and systemic level.