The Social and Cultural Context of Coping with Sickle Cell Disease: I. A Review of Biomedical and Psychosocial Issues

Few studies have examined psychosocial issues from the perspective of children who have sickle cell disease. In the present study psychosocial issues of self-esteem, social and family relationships, anxiety, depression, anger, denial, and knowledge were examined using a researcher-developed survey and 12 children with sickle cell disease as informants.

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

Qualitative Health Research ◽

10.1177/1049732320916464 ◽

2020 ◽

Vol 30 (9) ◽

pp. 1431-1444

Author(s):

Brenda Agyeiwaa Poku ◽

Ann-Louise Caress ◽

Susan Kirk

Keyword(s):

Sickle Cell Disease ◽

Young People ◽

Sickle Cell ◽

Growing Up ◽

Cell Disease ◽

Social Significance ◽

Major Threat ◽

Illness Experiences ◽

The Social ◽

Undesirable Feature

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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A Controlled, Longitudinal Study of the Social Functioning of Youth With Sickle Cell Disease

PEDIATRICS ◽

10.1542/peds.2009-2996 ◽

2010 ◽

Vol 125 (6) ◽

pp. e1453-e1459 ◽

Cited By ~ 13

Author(s):

R. B. Noll ◽

R. Kiska ◽

J. Reiter-Purtill ◽

C. A. Gerhardt ◽

K. Vannatta

Keyword(s):

Longitudinal Study ◽

Sickle Cell Disease ◽

Social Functioning ◽

Sickle Cell ◽

Cell Disease ◽

The Social

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Black Women and Sickle Cell Disease

Californian Journal of Health Promotion ◽

10.32398/cjhp.v5isi.1196 ◽

2007 ◽

Vol 5 (SI) ◽

pp. 24-39 ◽

Cited By ~ 1

Author(s):

Portia L. Cole

Keyword(s):

Mental Health ◽

Health Disparities ◽

Black Women ◽

Sickle Cell Disease ◽

Sickle Cell ◽

Psychiatric Morbidity ◽

Structured Interview ◽

Mental Health Disparities ◽

Cell Disease ◽

The Social

This qualitative study sought to center the personal experiences of Black American women affected by Sickle Cell disease (SCD) within the broader policy discussion of mental health disparities. Previous research suggests that stress may serve as a trigger for painful episodes which may contribute to increased rates of psychiatric morbidity in this population. The sample consisted of 10 women who perceived disease related stress in various social settings. Data was collected via tape recorded interviews using a semi-structured interview guide. The findings shed light on the role of perceived social stressors as potential determinants of mental health disparities among SCD women. The development of a gender and race specific psychosocial screening instrument which measures the social correlates of stress in this population is warranted. Amelioration of the social conditions that place SCD women at risk for poor mental health outcomes should be the ultimate policy goal.

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