Abstract

Background: Health communication has been associated with self-reported overall health-related quality of life (HRQL) in children with sickle cell disease (SCD). Yet, we know little about what mechanisms contribute to patients’ perceived self-efficacy in health communication. Studies have shown associations between social support from parents and better overall HRQL for children with SCD. Social support from parents (or other adults) may also be associated with health communication. Aims: To study the direct association of social support from parents and teachers with perceived self-efficacy in health communication in a sample of pediatric patients with SCD. Methods: Youth with SCD between ages 7-16 years completed the parent and teacher subscales of the Social Support Scale for Children (e.g., “Other kids have parents who do want to listen to their children’s problems.”) and the PedsQL SCD Module. A multiple regression analysis was conducted to examine associations between perceived social support from parents and teachers and health communication (PedsQL SCD Module Communication I domain; e.g., “It is hard to tell the doctors and nurses how I feel.”). Higher scores on the social support scale indicates more social support from parents, and higher scores on the PedsQL SCD Module Communication I domain reflects greater ease in talking to medical providers about their health. Results: The current study included 21 pediatric patients diagnosed with SCD in the US (M = 11.38 [SD = 2.78] years), with an almost equal number of girls (n = 11) and boys (n = 10). Reported SCD genotypes included HbSS (n = 14), HbSC (n = 6), and HbS-beta0 thalassemia (n = 1). The results of the multiple regression indicated that the model explained 30.6% of the variance and that social support was positively and significantly associated with perceived self-efficacy in health communication, F(2,17) = 3.75, p <.05. While social support from the parent significantly contributed to the model (B = 27.70, p <.05), social support from the teacher did not (B = -12.26, p =.12). Conclusion: Findings suggest that social support from parents can have a significant impact on patients’ perceived self-efficacy in health communication. Results from this study could inform interventions aimed at addressing social support from parents as a way to enhance children’s comfort in communicating with health care providers about their SCD. Future studies should explore potential moderating and mediating variables affecting the association between social support from parents and health communication to aid in developing and tailoring behavioral interventions.

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