ABSTRACT
This study assessed the effectiveness of using focus groups to obtain information about the characteristics of pain and quality of life in adults with sickle cell disease and their families. Five focus group sessions were held. Four groups consisted of adults diagnosed with sickle cell disease and one was composed of family members. Although focus groups were useful for addressing the purposes of the study, several volunteers in the patient group were unable to attend due to the occurrence of pain episodes. Adults with sickle cell disease identified recurring disabling pain and its consequences as interfering with their physical, emotional, and social quality of life. Several reported a pain aura that signaled the initiation of a painful episode. Useful self-care techniques and coping strategies were also identified. Common emotional responses included anger, hostility, depression, disenfranchisement, death anxiety and fatalism. The belief by those with sickle cell disease that health professionals viewed them as drug dependent often fueled angry and hostile responses. Religion was a major source for coping. Family members' quality of life was affected and they felt the negative impact of sickle cell disease on family relationships. Family members also reported feelings of helplessness, guilt, and parental self-blame. Health care providers could use information gained through this study to positively influence the care of adults with sickle cell disease.
