Quality of life, psychosocial strains and coping in parents of children with haemophilia

Abstract

Quality of life in parents of children suffering from haemophilia may be diminished by the illness burden experienced in daily life and by non-adaptive ways of coping. The aim of this study was to examine the relation between parents' quality of life, their perceived psychosocial strains and ways of coping, and to compare parents' outcome to other paediatric illness groups (juvenile idiopathic arthritis, type 1 diabetes). In a cross-sectional study, parents completed a questionnaire concerning quality of life, psychosocial strains, coping strategies and needs as well as sociodemographic and illness parameters. Study participants were recruited in an ambulant haemophilia centre. A total of 55 parents (32 mothers, 23 fathers; age = 39.6; SD = 8.6) of children suffering from haemophilia (age = 11.0; SD = 6.4) took part in the study. Comparison groups were parents of children with juvenile idiopathic arthritis (n = 161) and parents of children with type 1 diabetes (n = 69). Compared to parents from other paediatric illness groups, the parents of children with haemophilia experience less impact on their quality of life and lower psychosocial strains. Quality of life was predicted by the coping strategy 'improving marital relationship' (beta = 0.48) and by emotional strains and worries concerning future (beta = -0.43; explained variance 49%). Parents reported a pronounced need for further information on the comprehensive management of haemophilia. In the psychosocial care of families with a child suffering from -haemophilia, reducing psychosocial strains and strengthening adaptive coping strategies may be a preventive intervention for improving parents' quality of life.