Sickle cell disease related fatigue in adolescence: What do gender and the body have to do with it?

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SCD is the commonest inherited blood disorder globally, which is characterised predominantly by fatigue and acute and severe pains (Piel et al., 2013). Unlike pain, fatigue is under-recognised in research and care. This lack of attention is perhaps due to the perception that fatigue is an inevitable and ubiquitous consequence of the condition, about which nothing can be done and therefore must be endured by those living with SCD. Thus, individuals with SCD may be reluctant to raise fatigue during clinical consultations, while health professionals may give insufficient priority to fatigue, by focusing on the more obvious aspects of SCD (While & Mullen, 2004). Adolescents with SCD may be particularly vulnerable to the effects of fatigue due to the increased activity demands and expectations associated with increasing desire for autonomy and independence, and pursuit of education, careers, intimate relationships and starting a family (Ameringer et al., 2014). Therefore, ignoring fatigue means a significant aspect of adolescents' daily experience is overlooked in how they are supported and cared for by care providers and families. To understand how adolescents with SCD experience fatigue, my doctoral work adopted the constructivist grounded theory approach by Charmaz (2014) to construct a theory, based on the experiences of adolescents with SCD in Ghana to explain SCD-related fatigue in adolescence. The findings showed that fatigue was the most restrictive and disruptive aspect of the daily lives of adolescents with SCD. Fatigue was omnipresent and had a significant negative impact on daily functioning, pain experiences, emotional well-being, self/social development, and future outlook. Fatigue resulted in stigma, social isolation and exclusion. The study found sociocultural values and expectations within the Ghanaian context to contribute significantly to the experiences.The fellowship will focus on four objectives. (1) My PhD data suggests gender differences in the fatigue experiences that require sociological analysis to fully tease out the sociological implications to contribute to the sociology of health and illness more widely and the sociology of the body. This will enhance the depth of the evidence and its sociological contributions. (2) Engage with SCD-focused third sector organisations, healthcare providers and families of adolescents with SCD in Ghana. The engagement activities in Ghana is integral to the fellowship. The activities will support communicating research findings; and ensuring knowledge and attitudinal change among key stakeholders in Ghana, regarding fatigue in SCD. (3) Two peer-reviewed articles in Social Science and Medicine and Sociology of Health and Illness based on the sociological analysis, plus a paper in BMC Research Involvement and Engagement based on the engagement activities in Ghana. Opportunities will be sought to present the new knowledge at relevant conferences. (4) Develop a funding proposal to build on and continue my work in this field.The fellowship will thus provide ample opportunities to undertake key activities I could not focus on during my PhD, i.e. focus on aspects of my PhD data regarding gender and the body, and on achieving impact in Ghana. It will also provide opportunity to further my current professional skills/competencies. Planned journal papers will support the creation of a publication track record and improve my academic writing skills. Dissemination/impact events will provide spaces to network and enhance my communication skills for both academic and non-academic audiences across different contexts and disciplines. The fellowship will also enable me to develop a funding proposal to continue my work in the field. The activities planned for the fellowship will therefore consolidate my research skills, contribute to my professional development, facilitate my transition to an established early career researcher, and springboard my academic career in medical sociology.