Siblings' health-related quality of life in families with a child suffering from cystic fibrosis: The parents' and siblings' viewpoints

Objectives. - The impact of the presence of a child with cystic fibrosis in the family on the siblings is rarely studied. Moreover, the available empirical data are not clear. This study aims at evaluating the siblings' quality of life according to the assessments performed by, on the one hand, the parents and, on the other hand, the brothers and/or the sisters of the sick child. Methods. - Thirty families took part in this study for which we used two instruments. The parents filled out the Child Behavior Checklist, which is a questionnaire intended to assess the behavioral and emotional problems of their nonsick children. The parents and their nonsick children filled out the Duke Health Profile which is a questionnaire intended to assess the quality of life in three fields: physical health, social health, and mental health. Results. - The parents and their nonsick children differently assess this quality of life. The parents tend to over-estimate the physical health of their nonsick children and to incorrectly evaluate the risks of suffering that are-differently-expressed by their sons and/or their daughters. In particular, while they correctly estimate the social health of their sons, they overestimate their mental health (p < 0.02). At the contrary, while their evaluations of their daughters' mental health are quite well adjusted, they overestimate their social health (p < 0.03). Conclusion. - As most of the parents directly provide affective support and follow-up care for their child with cystic fibrosis, it remains necessary to more precisely specify how their perceptions of the health of the different members of the family fall under the family dynamics of adjustment to the disease. This conclusion goes for the research level as well as for the services for educational and psychological aid one. (C) 2008 Elsevier Masson SAS. All rights reserved.