Psychosocial Services for Children and Adolescents With Hemophilia and Their Families: Result of a National Survey

Abstract

Seventy-one providers at 53 hemophilia treatment centers were surveyed concerning their patient populations, types of problems encountered, type of psychosocial services provided, and obstacles to service delivery. Respondents, who were social workers, nurses, and psychologists, reported that they spent more time providing direct services for illness-related problems compared with general psychological problems. The most time-consuming problems included problematic child-adolescent adjustment to hemophilia (21.6%), parental adjustment to hemophilia (20.5%), child-adolescent adjustment to HIV (17.4%), and parental adjustment to HIV (14.0%). Practitioners utilized a wide range of services to address clinical problems, such as providing information and support to parents; assessment of child, parent, and family adjustment; psychotherapy for children and parents; and identification of community services and referral contracts for families. The families' distance from the center was rated as the most significant obstacle to delivery of psychosocial services. Findings have potential implications for planning for psychosocial services for children with hemophilia and their families as well as for support and education of service providers.