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

Abstract

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.

Measure of Social Support and Its Relevance to the Clinical and Demographic Characteristics of Patients Going to the Hemophilia Center

“…2024; 22(1): e143502. (32). In the present study, 49.2% of the participants had a diploma and sub-diploma education, and 1 case had postgraduate education and higher.…”

Associated comorbidities, healthcare utilization & mortality in hospitalized patients with haemophilia in the United States: Contemporary nationally representative estimates

“…We also observed modest increases in haemophilic arthropathy from 0.9% to 2.1% between 2007 and 2017 9 . The hemarthrosis and haemophilic arthropathy prevalence for inpatients need to be explored further, but could be related to more diligent coding, early awareness/diagnosis, or driven by behavioural changes with improved treatments allowing haemophilia patients much more flexibility and range of motion and an active lifestyle 9,35 . Rates of genitourinary bleeding, have decreased from 3.4% to 2.6% 9 .…”

“…9 The hemarthrosis and haemophilic arthropathy prevalence for inpatients need to be explored further, but could be related to more diligent coding, early awareness/diagnosis, or driven by behavioural changes with improved treatments allowing haemophilia patients much more flexibility and range of motion and an active lifestyle. 9,35 Rates of genitourinary bleeding, have decreased from 3.4% to 2.6%. 9 Importantly, both infectious and non-infectious central line related complications were common; however, trates appear to have decreased some from 15.2% in 2007 to 9.3% in 2017.…”

The effect of a virtual child disease management programme on burden and social adjustment of caregivers of children with coagulation factor deficiencies

“…These major challenges not only change the child's life, but may also impact on their parents/caregivers 1 . Coagulation factor deficiencies impact on physical, emotional, social and cognitive functioning of the family with negative effects on family communication, relationships and daily activities 2 …”

“…1 Coagulation factor deficiencies impact on physical, emotional, social and cognitive functioning of the family with negative effects on family communication, relationships and daily activities. 2 Parents of children with coagulation factor deficiencies also experienced worries and stress as a result of these challenges. 3 Emotional and psychological effects of having a child with coagulation factor deficiencies are an important burden for parents/caregivers.…”