Education Needs of Adults Living with Sickle Cell Disease in the U.S. and Jamaica

Abstract

Purpose: To identify psychosocial and physiological components of sickle cell disease (SCD) health promotion to be included in patient and family education materials provided to an adult living with SCD for the promotion of wellness and reduction in complications of the disease. Background and significance: SCD occurs in approximately one in five hundred Jamaican born people and about 0.49 out of 1000 in America and results in intense pain episodes, and multi­organ failure (Knight-Madden, 2011). The role of the nurse and other healthcare providers as well as community based organizations in patient education is critical for promotion of quality of life. Tannahill (2009) argues that "fostering of empowering attributes such as resilience, self­esteem, confidence and lifeskills" also falls under the realm of education. Methods: A combination of telephone and written questionnaires were completed by nurse experts caring for patients with SCD in the U.S. and Jamaica, as well as executive board members of community based organizations for the support of community members living with SCD and their families. Discussion: There is a consensus that individuals with SCD are not adequately educated about the condition and its implications. Respondents recommended that those living with SCD be taught about basic physiology of the disease, family planning, early signs of complications, and exacerbating factors. Furthermore, each respondent explored barriers to effective educational interventions as well as methods of enhancing the quality and effectiveness of these interactions. This information can be used to develop effective educational materials for improving health outcomes.