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.
References (41)
- et al.
Events of hospitalization among children with sickle cell disease
Journal of Pediatric Nursing
(2007) - et al.
Effects of self-efficacy, social support and knowledge on adherence to PEFR self-monitoring among adults with asthma: A prospective repeated measures study
International Journal of Nursing Studies
(2007) - et al.
Improved survival of children and adolescents with sickle cell disease
Blood
(2010) - et al.
The MOS social support survey
Social Science and Medicine
(1991) - et al.
Relationships of asthma knowledge, self-management, and social support in African American adolescents with asthma
International Journal of Nursing Studies
(2005) - et al.
A qualitative analysis of best self-management practices: Sickle cell disease
Journal of the National Medical Association
(2010) - et al.
A review of the literature on the multiple dimensions of chronic pain in adults with sickle cell disease
Journal of Pain and Symptom Management
(2010) - et al.
Emergency department visits made by patients with sickle cell disease: A descriptive study, 1999-2007
American Journal of Preventive Medicine
(2010) - American National Red Cross (2014). Sickle cell donor program. Retrieved July 25, 2014, from:...
- et al.
Acute care utilization and rehospitalizations for sickle cell disease
Journal of the American Medical Association
(2010)
Social support, self-efficacy, and outcome expectations: Impact on self-care behaviors and glycemic control in caucasian and African American adults with type 2 diabetes
The Diabetes Educator
Evaluation of a disease-specific self-efficacy instrument in adolescents with sickle cell disease and its relationship to adjustment
Child Neuropsychology
Social support, medication compliance and HIV/AIDS
Social Work in Health Care
Pain management for sickle cell disease in children and adults (review)
Cochrane Database of Systematic Reviews
Self-efficacy as a predictor of adult adjustment to sickle cell disease: One-year outcomes
Psychosomatic Medicine
Self-efficacy instruments for patients with chronic diseases suffer from methodological limitations–a systematic review
Health and Quality of Life Outcomes
Helping patients follow prescribed treatment: Clinical applications
Journal of the American Medical Association
Cited by (32)
Translation, cross-cultural adaptation and validation of the sickle cell self-efficacy scale (SCSES)
2023, Hematology, Transfusion and Cell TherapyOn the possibility of a disabled life in capitalist ruins: Black workers with sickle cell disorder in England
2021, Social Science and MedicinePain Experience, Physical Function, Pain Coping, and Catastrophizing in Children With Sickle Cell Disease Who Had Normal and Abnormal Sensory Patterns
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.
Socioeconomic status dependent medical complexities in children with sickle cell disease in Saudi Arabia
2020, Saudi Journal of Biological SciencesCitation Excerpt :This is in accordance to earlier research in the US (Farber et al., 1985). As adults, a lack of employment and low income in the SCD affected population is seen, suggesting that resources are needed to make health care more accessible and affordable to these patients (Matthie et al., 2015). This socio demographic information would help the health professional while counseling for pre-marital screening programs, to put forth these considerations, to the concerned governmental authorities.
A Qualitative Study of Chronic Pain and Self-Management in Adults with Sickle Cell Disease
2019, Journal of the National Medical AssociationCitation Excerpt :Self-management is a self-motivated and collaborative process, involving patients, their family members, and healthcare providers, to manage chronic disease symptoms.25 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.
Developing a problem-solving intervention to improve self-management and transition readiness in adolescents with sickle cell disease
2019, Journal of Pediatric NursingCitation Excerpt :Specifically adolescents with SCD have particularly poor clinic attendance rates, which means clinic based programs are not likely to reach patients who may need them the most, and they need to develop self-management skills within the context of a parent-child dyad (Kayle, Tanabe, Shah, Baker-Ward, & Docherty, 2016; Modi et al., 2009; Porter et al., 2014). Problem solving skills are an integral part of disease self-management, perhaps especially so for adolescents with SCD who need to develop skills to handle both predictable tasks, including adherence to clinic visits and daily medication, and cope with unpredictable events such as managing acute pain or navigating issues at work or school (Bodenheimer, Lorig, Holman, & Grumbach, 2002; DeBaun & Telfair, 2012; Hill-Briggs, 2003; Jenerette & Murdaugh, 2008; Matthie, Jenerette, & McMillan, 2014). Interventions based on problem-solving skills have been shown to improve outcomes in a variety of chronic conditions, mainly in adults, but often require a trained mental health clinician which makes them less accessible for our patient population (Lyons et al., 2015; Schumann, Sutherland, Majid, & Hill-Briggs, 2011).
This work was supported in part by the National Institute of Nursing Research: T32 NR007091.