“Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences

Poku, Brenda Agyeiwaa; Caress, Ann-Louise; Kirk, Susan

Abstract

Research exploring illness experiences of young people with sickle cell disease (SCD) has, to date, ignored fatigue, despite the distinctive anemic nature of SCD. To examine adolescents with SCD fatigue experiences, we conducted narrative and picture-elicitation interviews with 24 adolescents in Ghana. A grounded theory, “body as a machine,” was constructed from the narratives. Fatigue represented the most restrictive and disruptive aspect of growing up with SCD. Its meaning and significance laid in what it symbolized. Fatigue represented a socially undesirable feature that was stigmatizing, due to the expectations of high physicality in adolescence. Fatigue was therefore a major threat to “normalcy.” The social significance of the physical body and its capacities shaped the adolescents’ fatigue experiences. Managing fatigue to construct/maintain socially acceptable identities dominated the adolescents’ lives. Consequently, there is a need for a recognition of the significance of fatigue to adequately support young people growing up with SCD.

Citation

Poku, B. A., Caress, A.-L., & Kirk, S. (2020). “Body as a Machine”: How Adolescents With Sickle Cell Disease Construct Their Fatigue Experiences. Qualitative Health Research, 30(9), 1431-1444. https://doi.org/10.1177/1049732320916464

• Journal Article Type: Article
• Acceptance Date: Mar 12, 2020
• Online Publication Date: May 14, 2020
• Publication Date: Jul 1, 2020
• Deposit Date: Mar 18, 2020
• Publicly Available Date: May 14, 2020
• Journal: Qualitative Health Research
• Print ISSN: 1049-7323
• Electronic ISSN: 1552-7557
• Publisher: SAGE Publications
• Peer Reviewed: Peer Reviewed
• Volume: 30
• Issue: 9
• Pages: 1431-1444
• DOI: https://doi.org/10.1177/1049732320916464
• Public URL: https://nottingham-repository.worktribe.com/output/4165711
• Publisher URL: https://journals.sagepub.com/doi/pdf/10.1177/1049732320916464