Original ArticleRole of Self-Care in Sickle Cell Disease
Section snippets
Background
Sickle cell disease (SCD) is a group of genetic disorders characterized by abnormal hemoglobin molecules, impaired blood flow, decreased oxygen capacity of red blood cells, organ damage, and resultant complications (Olowoyeye & Okwundu, 2010). In the United States, approximately 100,000 individuals have SCD (Centers for Disease Control and Prevention, 2011a). Blacks are primarily affected, with a disease incidence of 1 in 500 births and the trait or carrier state occurring in 1 in 12 births.
Literature Review
Self-efficacy, social support, sociodemographics, and self-care have been noted as critical concepts associated with the management of SCD and other chronic diseases. According to the Theory of Self-care Management for SCD, self-care resources positively mediate the relationship between vulnerability factors and health outcomes (Jenerette, Brewer, Edwards, Mishel, & Gil, 2014). Vulnerability factors (lack of sickle cell crisis cue recognition and response, number of complications, number of
Design
This was a descriptive cross-sectional study using secondary analysis. Although the parent study included data from Black adults with SCD ages 18 to 73 years, only a subset of the study population, those ages 18 to 30 years, was used for this analysis. A brief summary of the parent study is provided here; see the original study for more details (Jenerette & Murdaugh, 2008).
Results
Study participants were primarily women (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an average of three annual hospital visits for pain crises (Table 1). On average, participants were 24 years old, had 12 years of education, and an annual household income of $35,724 (Table 2).
Descriptive analyses of SCD self-efficacy, social support, perceived self-care ability, and self-care actions were conducted; overall scores were high for each (Table 2). In terms of SCD
Discussion
Sickle cell disease self-efficacy, social support, and years of education were noted as important in understanding the role of self-care in young adults with SCD. These findings coincide with previous studies in which higher perceived self-care ability and self-care actions have been associated with higher SCD self-efficacy, social support, and education in the general SCD population (Edwards et al., 2001, Frei et al., 2009, Jenerette and Murdaugh, 2008). Social support appears to have the most
Conclusions
Study findings complement previous research and contribute to an improved understanding of the role of self-care in young, Black adults with SCD. Sickle cell disease self-efficacy, social support, and years of education may predict important pain outcomes and thus can be useful in designing patient education programs aimed at improving self-care actions. To inform intervention development, further investigation is needed regarding specific self-care strategies SCD patients use daily to prevent
Acknowledgments
The first author gratefully acknowledges Jason Beckstead, PhD, Constance Visovsky, PhD, RN, ACNP-BC, and William Haley, PhD for their advice and support during the completion of this work.
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2020, Journal of Pain and Symptom ManagementCitation Excerpt :Holloway et al.83 reported that stigma was associated with depressive symptoms. Stigma and its impact on care-seeking behavior, stress management, and medication adherence are not recognized, addressed, or assessed, which contributes to poor psychological outcomes and overall lack of well-being in SCD patients.84–86 Health care providers may minimize stigma through self-awareness of their own biases.
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2019, Journal of the National Medical AssociationCitation Excerpt :This process is particularly relevant to individuals with SCD because they experience most of their pain at home, and disease management primarily focuses on preventing and managing pain.12,26 While self-management of acute SCD pain has been investigated,26–30 there are no published peer-reviewed studies to date which evaluate self-management of chronic SCD pain. There is also a paucity of research which directly captures, in the patient's own voice, the chronic pain experience and the impact of chronic pain on quality of life.
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This work was supported in part by the National Institute of Nursing Research: T32 NR007091.