Social Issues in Living with Sickle Cell Disease Pain

The chronic painful episodes associated with Sickle Cell Disease (SCD) can have serious psychological consequences that can reduce patients' ability to cope with the illness. The purpose of this exploratory research was to examine issues faced by sickle cell disease patients. In addition to providing descriptive information about this population, pain, stigma consciousness and helpfulness of disclosures about the illness were examined in relation to pain self-efficacy, benefit finding, and depressive mood. Seventy-three SCD patients completed a self-report questionnaire. They reported an average of 8.6 SCD pain episodes in the last 12 months with an average level of pain intensity at 7.6 on a 10 point scale (10 being as bad as it can be). Most of the sample reported that they disclosed the most about their pain experiences to their primary care physicians and to God, and they found these disclosures to be the most helpful. The most common method that patients would use to treat pain crises would be to take narcotic pain medication and to see their doctor. Pain experiences were related to disclosure, psychosocial variables (i.e., stigma consciousness, depressive symptoms, benefit finding, and pain self-efficacy), and pain management techniques. Disclosures were related to psychosocial variables and pain management techniques. Psychosocial variables and pain management techniques were also related.