The psychosocial well-being of children with chronic disease, their parents and siblings: an overview of the research evidence base

Background Chronic disease of childhood may have implications for the psychosocial well-being of children and their families. The purpose of this paper is to provide an overview of the current literature regarding the psychosocial well-being of children with chronic disease, their parents and siblings. Methods Electronic searches were conducted using AMED, CINAHL, Cochrane Database, DARE, HTA, MEDLINE, NHS EED, PsycLIT, PsycINFO and PubMED (1990 to week 24, 2004). Inclusion criteria were systematic reviews, meta-analyses and overviews based on traditional reviews of published literature. The titles of papers were reviewed, abstracts were obtained and reviewed, and full copies of selected papers were obtained. Results Six reviews of the psychosocial well-being of children were identified: three on chronic disease in general, one on asthma, one on juvenile idiopathic arthritis and one on sickle cell disease. Two reviews of psychosocial well-being among parents and two reviews of sibling psychosocial well-being were identified. Evidence from meta-analyses shows that children were at slightly elevated risk of psychosocial distress, although only a minority experience clinical symptomatology. The proportion that experience distress remains to be clarified, as do contributory risk factors. Few conclusions can be drawn from the two reviews of parents. However, a meta-analysis of siblings showed that they are at risk from a number of negative effects. Conclusion This overview has highlighted the need to extend the evidence base for psychosocial well-being of children, parents and siblings.