Abstract

Despite clinical advances, sickle cell disease (SCD) remains a difficult, chronic medical condition for many children and youth. Additional treatment strategies, including complementary and alternative medicine (CAM) therapies, would be welcome to enhance the clinical care of SCD patients. This study's objective was to identify CAM therapies that are currently used by families for children with SCD, and to investigate SCD families' interest in CAM. Fifty-seven (57) parents of pediatric SCD patients participated in this cross-sectional telephone survey in early 2000. A SCD Severity Scale was developed by combining the general health assessment and four measures of SCD severity (Cronbach's alpha = 0.81). Fifty-four percent (54%) of the sample used CAM therapies for the SCD children. Forty-two percent (42%) used bioenergetic therapies (prayer, spiritual and energy healing), 28% used lifestyle/mind?body CAM (relaxation techniques, exercise, imagery, and diet), 12% used biochemical therapies (herbal medicines, megavitamins, and folk remedies), and 5% used biomechanical therapy (massage). CAM use for the SCD children was positively associated with the child's age, SCD Severity Scale score, respondent education, and respondent CAM use. The use of relaxation techniques was associated with greater SCD severity. Most respondents (83%) felt that CAM can be helpful. The use of CAM therapies is common for children with SCD. Prayer, relaxation techniques, and spiritual healing were the most commonly reported CAM therapies. Because clinical studies have shown the benefit of spiritual and relaxation practices for SCD and this study shows that these CAM therapies are being used commonly by SCD families, future research should focus on spiritual and relaxation practices for children with SCD.

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