Growing Up With Sickle Cell Disease

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.

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Growing Up With Sickle Cell Disease: A Pilot Study of a Transition Program for Adolescents With Sickle Cell Disease

Yearbook of Pediatrics ◽

10.1016/j.yped.2011.12.011 ◽

2013 ◽

Vol 2013 ◽

pp. 71-73

Author(s):

J.A. Stockman

Keyword(s):

Pilot Study ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Transition Program ◽

Growing Up ◽

Cell Disease

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Exploring Transition to Self-Management Within the Culture of Sickle Cell Disease

Journal of Transcultural Nursing ◽

10.1177/1043659615609404 ◽

2016 ◽

Vol 28 (1) ◽

pp. 70-78 ◽

Cited By ~ 5

Author(s):

Nancy Labore ◽

Barbara Mawn ◽

Jane Dixon ◽

Biree Andemariam

Keyword(s):

Sickle Cell Disease ◽

Sickle Cell ◽

Design Method ◽

The United States ◽

Self Management ◽

Growing Up ◽

Cell Disease ◽

Time Space ◽

Study Results ◽

Unique Experience

Purpose: The aim of this study was to explore the meaning of transition to self-management in sickle cell disease. Design/Method: Twelve audio-recorded semistructured interviews were conducted with a sample of 21- to 25-year-olds recruited from a comprehensive sickle cell center in the northeast region of the United States. Data were analyzed using an existential framework according to van Manen’s phenomenological method. Findings: The meaning of transition to self-management was found in lived time, space, body, and human relationship. The emerging themes highlighted in this article include: Best Mother Ever, Growing up in the Hospital, I’m Not Trying that Again, Doing it on My Own, Living Day-by-Day, and Not a Kid any Longer. The themes reflected meaning and insight into this unique experience. Conclusion/Practice Implications: Study results emphasize the culturally constructed meaning of transition to sickle cell disease self-management and need to integrate transcultural perspectives into nursing practice to support this emerging phenomenon.

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