Biographical accounts of the impact of fatigue in young people with sickle cell disease

Poku, Brenda Agyeiwaa; Pilnick, Alison

Abstract

Children and young people (CYP) with sickle cell disease (SCD) are a 'missing voice' in the debate on biography and sociology of chronic illness, meaning we know little about the social consequences of the illness for CYP. This paper examines the meaning of fatigue (a common symptom) for adolescents with SCD. Analysing 24 in-depth interviews with adolescents aged 12–17years in Ghana, we draw on the distinction proposed by Bury (1988) between 'meanings as significance' and 'meanings as consequence' to examine biographical aspects of fatigue. We argue that concepts of 'biographical disruption' and 'normal illness' do not easily accommodate the experience of CYP with congenital chronic illnesses like SCD, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experienced as 'new', 'different', or 'non-normal'. They may become restrictive rather than continuous or disruptive. These experiences are influenced primarily by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, biographical enactment, biographical abandonment and biographical reframing are more relevant concepts for understanding the experiences of CYP living with SCD.

Citation

Poku, B. A., & Pilnick, A. (2022). Biographical accounts of the impact of fatigue in young people with sickle cell disease. Sociology of Health and Illness, 44(6), 1027-1046. https://doi.org/10.1111/1467-9566.13477

• Journal Article Type: Article
• Acceptance Date: Apr 11, 2022
• Online Publication Date: Apr 29, 2022
• Publication Date: 2022-06
• Deposit Date: May 5, 2022
• Publicly Available Date: May 5, 2022
• Journal: Sociology of Health and Illness
• Print ISSN: 0141-9889
• Electronic ISSN: 1467-9566
• Publisher: Wiley
• Peer Reviewed: Peer Reviewed
• Volume: 44
• Issue: 6
• Pages: 1027-1046
• DOI: https://doi.org/10.1111/1467-9566.13477
• Keywords: Public Health, Environmental and Occupational Health; Health Policy; Health (social science)
• Public URL: https://nottingham-repository.worktribe.com/output/7785586
• Publisher URL: https://onlinelibrary.wiley.com/doi/10.1111/1467-9566.13477