Sickle Cell Disease: The Role of Self-Care Management

Abstract Sickle cell disease is the most common genetic disorder in the United States. Approximately 90% of the hospitalizations in this patient population occur due to the most common complication, pain crises. Prevention of these crises is therefore essential and requires the patient to assume an active role in his or her disease management. Studies suggest that further research is needed to examine the self-care management process and to identify factors influencing self-care behaviors. The relationships among these factors must be clearly defined before interventions to improve self-care management can be determined. The aims of the study were threefold. The first aim was to evaluate the relationships among psychosocial variables (SCD self-efficacy and social support) and socio-demographic variables (age, gender, education, employment status, income, and living situation) in understanding individual differences in self-care management variables (perceived self-care ability and self-care actions). It was hypothesized that higher SCD self-efficacy, greater social support, being employed, living with family or friends, increased age, more years of education, higher income, and being male are each associated with having higher perceived self-care ability and more frequent self-care actions. The second aim was to evaluate the relationships among psychosocial variables (SCD self-efficacy and social support), socio-demographic variables (age, gender, education, employment status, income, and living situation), and self-care management variables (perceived self-care ability and self-care actions) in understanding hospital visits for crises. It was hypothesized that higher perceived self-care ability and more frequent self-care actions are associated with fewer hospital visits for crises. The third aim was to evaluate the mediational role of perceived self-care ability and self-care actions in the relationships among psychosocial variables (SCD self-efficacy and social support), socio-demographic variables (age, gender, education, employment status, income, and living situation), and the number of hospital visits for crises. It was hypothesized that SCD self-efficacy, social support, and the socio-demographic variables have both a direct and an indirect relationship with the number of hospital visits for crises. In 103 young Black adults (ages 18-30) with sickle cell disease (SCD), an exploratory , correlational study was conducted, via secondary analysis of data, to examine the relationships among SCD self-efficacy, social support, socio-demographic variables, self-care management (self-care ability and self-care actions), and the number of hospital visits for crises. Bivariate correlations and regression analyses were conducted to evaluate the relationships among the variables and to examine the mediational role of self-care management. Sickle cell disease self-efficacy, social support, years of education, and income were significantly related to perceived self-care ability and self-care actions. Social support accounted for the majority of the variance in each self-care management variable. The hypothesis that higher SCD self-efficacy and greater social support are associated with higher perceived self-care ability and more frequent self-care actions was supported. Education was also associated with higher perceived self-care ability and self-care actions as hypothesized. The overall model with SCD self-efficacy, social support, years of education, income, perceived self-care ability, and self-care actions was not significant in predicting the number of hospital visits for crises. There were no significant associations noted among age, annual household income, living situation, employment status, and the self-care management variables. The hypothesis that higher perceived self-care ability and more frequent self-care actions are associated with fewer hospital visits for crises was not supported. Further, there was no adequate evidence to support a direct relationship between SCD self-efficacy, social support, years of education, and the number of hospital visits for crises. The indirect relationship, through self-care management, among the variables was also non-significant. There was however a significant direct relationship noted between income and the number of hospital visits for crises. The outcomes of the study may be important for clinical care, patient education, and health outcomes in the SCD population. Findings may be used to conduct larger confirmatory studies and to develop interventions that may be used to supplement therapy in the clinical setting and to enhance patient self-care management at home. Additional studies are needed, however, to clarify what additional variables may affect the number of hospital visits for crises and to identify specific pain prevention and management strategies used by SCD patients