For boys with hemophilia, social participation may be beneficial to their self-perception and strengthening of ties to social networks, based on results of a new study based in Canada. The study was presented in the journal Research & Practice in Thrombosis & Haemostasis.
Joint damage is a risk experienced by boys with severe hemophilia that may hinder their participation in various activities. “It has been suggested that for children with chronic illnesses, social participation restrictions may be more important to them than their disease and that the inability to participate like one’s peers could both lead to and result in stigma, which may further restrict social participation,” the researchers wrote in their report. They undertook this study to evaluate relationships between self-perception and social participation in boys with hemophilia.
The cross-sectional, observational study included 50 boys who were treated at The Hospital for Sick Children in Toronto, Canada, and who had been diagnosed with moderate or severe hemophilia A or B, with or without inhibitors. The study was based on patient self-reporting of social participation, self-perception, and social support. Reporting tools included the Participation Scale modified for pediatric patients (as a measure of social participation), child and adolescent versions of the Self-Perception Profile, and the Social Support Scale for Children. Parents of children in this study completed the Family Impact Module of the Pediatric Quality of Life Inventory.
This study included 30 boys of ages 7 to 12 years and 20 boys of ages 13 to 18 years, and most (70%) had severe hemophilia. Among these patients, researchers found a strong correlation between social participation and the Global Self-Worth self-perception subscale (r, -0.6; P <.0001). They also found a strong correlation between social participation and the Social Acceptance self-perception subscale (r, -0.5; P =.0003). A strong correlation was seen between social participation and athletic competence only among adolescent patients.
Strong correlations were evident between social participation and social support from parents, as well as from classmates (r, -0.6; P <.0001 for both) and from teachers (r, -0.5; P <.0001). Moderate correlations were seen between social participation and social support from close friends (r, -0.4; P =.002) and between social participation and social functioning (r, -0.3; P <.05). Based on parents’ responses on the survey they completed, it appeared that the hemophilia diagnosis was associated with minimal negative family impact.
The researchers noted that this study took place in a nation they considered to have adequate access to safe and effective clotting factor concentrates. They concluded that most patients in this study experienced few restrictions to participation, but that some showed lowed low scores for self-perception.
“In spite of all that has been achieved regarding hemophilia care, it is important to bear in mind that chronic illness is a part of these boys’ lives and that sometimes hemophilia can be a very difficult illness to cope with,” the researchers wrote in their report. They indicated that knowledge regarding social participation in patients with this condition may aid in development of interventions.
Disclosures: Some authors have declared affiliations with or received grant support from the pharmaceutical industry. Please refer to the original study for a full list of disclosures.
Chiu AS, Blanchette VS, Barrera M, et al. Social participation and hemophilia: self-perception, social support, and their influence on boys in Canada. Res Pract Thromb Haemost. 2021;5(8):e12627. doi:10.1002/rth2.12627