The impact of a peer support group for children with rheumatic heart disease in Uganda.

Abstract

To assess the impact of a peer-support group on knowledge, quality of life, and social support for children with rheumatic heart disease (RHD). Children diagnosed with RHD and receiving 4-weekly injectable penicillin were invited to participate in a monthly support group for 6 months. Pre- and post-intervention assessments included a baseline RHD knowledge assessment, a measure of health related quality of life (HRQOL) (PedsQL_TM4.0), and a measure of social support (Hawthorne Friendship Scale). Groups incorporated elements of cooperative play and team building, RHD education, and emotional support. 42 participants attended ≥3 groups and were included in the analyses. Attending support groups resulted in increased total HRQOL scores (60.3v 70.2, p<0.001), as well as the following HRQOL sub-scores (physical functioning 55.3v 68.6 (p<0.001), social functioning 64.2v 75.8 (p<0.001) and school functioning 59.2v 69.1 (p=0.001)). Significant increases in Friendship Scale scores (15.4v 19.7, p<0.001) and RHD Knowledge scores were observed (3.6v 6.4, p<0.001). Peer-support groups may be effective at normalizing decreased HRQOL scores and increasing RHD disease knowledge and social support. Peer-support groups implemented in conjunction with RHD screening can minimize the negative psychosocial effects associated with early RHD detection.