Role of Self-Care in Sickle Cell Disease

Abstract

Background 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. Aims To examine factors which influence self-care among young adults with SCD. Design A descriptive, cross-sectional study was conducted using secondary data analysis. Settings Participants were recruited from two SCD clinics in the southeastern United States. Participants The sample consisted of 103 young adults, ages 18–30 years, with SCD. Methods Bivariate correlations and regression analyses were used to evaluate the relationships among SCD self-efficacy, social support, socio-demographics, self-care, and hospital visits for pain crises. Results Study participants were primarily female (61.2%), unemployed or disabled (68%), lived with family (73.8%), and had an average of three hospital visits for pain crises annually. 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=−.219, p=.05). Conclusions 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.

Perceptions of young adults with sickle cell disease concerning their disease experience

“…Matthie et al . () describe the particular importance of self‐care activities for young adults with SCD due to their disproportionate health care use compared with other adults with SCD. Because self‐care is an important aspect of SCD management, providers need to assess health care practices and educate young adults with SCD about other potentially effective self‐care strategies.…”

“…Individuals with SCD experience disease challenges that result in a lack of education and employment, thus financial hardships (Matthie et al . ). Young adults are not likely to be financially independent and they have had a change in or loss of insurance (Jordan et al .…”

Self‐management recommendations for sickle cell disease: A Ghanaian health professionals' perspective

“…Internationally, SCD self‐management research has generally been conducted among patients and little has been done to elicit the perspectives of health professionals. Currently, no internationally agreed best practice standards have been published to guide health professionals to support SCD self‐management.…”

“…[20][21][22] Effective support by health professionals optimises patients' self-management, thereby contributing to improvements in patients' health outcomes, the rational use of health resources, and a reduction in health care costs for LTCs such as SCD. 23,24 Internationally, SCD self-management research has generally been conducted among patients [25][26][27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42] and little has been done to elicit the perspectives of health professionals. Currently, no internationally agreed best practice standards have been published to guide health professionals to support SCD self-management.…”

Sickle Cell Disease in Adults: Developing an Appropriate Care Plan

“…They are more likely to be less educated and are more likely to be unemployed or disabled than African Americans without SCD (Laurence, George, & Woods, 2006). Financial limitations may arise because of a lack of education and employment or appropriate employment because of a lack of educational preparation (Matthie, Jenerette, & McMillan, 2015); therefore, the ED may be the primary source of care.…”