Original Article
Role of Self-Care in Sickle Cell Disease

https://doi.org/10.1016/j.pmn.2014.07.003Get rights and content

Abstract

Self-care is an important aspect of managing a chronic disease. In sickle cell disease (SCD), home self-care contributes to individual pain management and thus pain crisis prevention. A better understanding of self-care can help health care providers equip patients with the resources and skills necessary to participate in their disease management. The aim of this study was to examine factors that influence self-care among young adults with SCD. A descriptive, cross-sectional study was conducted using secondary data analysis. Participants were recruited from two SCD clinics in the southeastern United States. The sample consisted of 103 young adults, ages 18 to 30 years, with SCD. Bivariate correlations and regression analyses were used to evaluate the relationships among SCD self-efficacy, social support, sociodemographics, self-care, and hospital visits for pain crises. Study participants were primarily women (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an annual average of three hospital visits for pain crises. Participants, on average, had 12 years of education, an annual household income of $35,724, and were 24 years old. Social support (p = .001), SCD self-efficacy (p = .002), and years of education (p = .043) were significantly related to self-care. Of the hypothesized variables, only income was significantly associated with hospital visits for pain crises (r = −0.219, p = .05). Individuals with SCD may benefit from self-care interventions that enhance social support, SCD self-efficacy, and access to education. To inform intervention development, further investigation is needed regarding daily self-care behaviors used by young adults with SCD.

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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