Hemophilia — Psychological Factors and Comprehensive Management

Abstract

Since chronic disease compounds the difficulties of child rearing and increases the incidence of psychological problems in all age groups, patient care emphasizing technology alone is inadequate. Instead, a biopsychosocial approach is necessary t o correlate medical care with vital information about the patient's psychological and social state. Hemophilia acts as a chronic recurrent stress on the individual and his family requiring the development of coping behaviors for adaptation. While many hemophiliacs achieve normal psychological development, some are overwhelmed by t h e illness contributing to maladaptation and a variety of psychological disorders. Accordingly, medical staff efforts and attitudes that promote effective coping are a vital part of comprehensive care. The goals of coping include carrying out acceptable life goals despite illness handicaps, keeping uncomfortable feelings within manageable limits and the maintenance of a positive self-image. Efforts t o support effective coping begin with effective medical care including adequate relief for acute pain, educational programs that promote optimal child rearing and self-care and the opportunity for the patient and family t o talk about concerns and feelings. Comprehensive care also provides for the identification and specific treatment of psychiatric disorders that may develop.

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

“…Previous research is inconclusive about self‐perception in boys with hemophilia. Some suggest that boys with hemophilia are more likely to report lower perceived competence than healthy peers, 20 , 21 whereas others argue that self‐esteem and self‐perception are comparable to healthy peers. 14 , 22 Consistent with research in the Netherlands, 14 our findings support the notion that boys with hemophilia whose disease is well managed and are well‐supported socially are no more susceptible to lower levels of self‐perception than their healthy peers without hemophilia.…”

“…Two questions relevant to North America were added (to explore if participants play games and use social networking sites as compared with their classmates). Grades of participation restriction were proportionately redefined as: no significant restriction (0-15), mild restriction (16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26)(27), moderate restriction (28)(29)(30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40), severe restriction (41-66), and extreme restriction (67-115).…”