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.