Social participation and hemophilia: Self‐perception, social support, and their influence on boys in Canada

BACKGROUND: Patients with hemophilia may experience joint damage, which can impair participation, yet few studies have examined the impact hemophilia may have on social participation and quality of life. OBJECTIVES: The aims of this study are to assess the relationship between patient social participation and self‐perception, social support, and impact on the family. PATIENTS/METHODS: A random representative sample of 50 boys with hemophilia from The Hospital for Sick Children, Toronto, Canada, completed measures of social participation (Participation Scale for kids), self‐perception (Self‐Perception Profile for children and adolescents), and social support (Social Support Scale for children). Participants' parents completed Family Impact Module of the Pediatric Quality of Life Inventory. Data were analyzed using Pearson product‐moment correlations. RESULTS: Social participation was strongly correlated with self‐perception subscales Social Acceptance (r = −0.5, p = <0.001) and Global Self‐Worth (r = −0.6, p = <0.001) for all participants. The Athletic Competence subscale was strongly correlated for adolescents only (r = −0.6, p = <0.01). There were strong correlations between social participation and social support from parents (r = −0.6, p = <0.001), teachers (r = −0.5, p = <0.001), and classmates (r = −0.6, p = <0.001) and moderate correlations for support from close friends (r = −0.4, p = <0.01). There were no significant correlations with family impact. CONCLUSION: In the context of a country with unlimited access to safe clotting factor concentrates, boys with hemophilia have few social participation restrictions. Although correlational findings do not represent causality, they suggest that encouragement of social participation may be beneficial in boys with hemophilia to increase self‐perception as well as strengthen their social support network.