Quality of Life in Childhood Inflammatory Bowel Diseases. International Meeting. Manchester, GBR, 1997/09/17.
Few investigators have reported on the quality of life of family members of children with inflammatory bowel disease.
Psychological symptoms have been reported in parents and siblings, but the problems that which give rise to these symptoms are seldom examined.
In this pilot study, some of the issues that affect the quality of life of parents and siblings of children with inflammatory bowel disease were examined.
Focus group meetings were held separately with 20 parents and 7 siblings of children with inflammatory bowel disease.
The participants were encouraged to identify voluntarily problems related to the disease that affected their lives, and the discussions were tape recorded.
Each participant subsequently wrote down the three most important concerns.
Thirteen (65%) parents were very concerned about the effect of the disease on the child's future (jobs, marriage, independence) and 11 (55%) were worried about problems the ill child was encountering at school.
Other issues of most concern to parents included side effects of medication (n=7), limited job prospects (n=3), persistent feelings of guilt (n=3), and restricted family lifestyle (n=I).
Most siblings (57%) were concerned about their parents'keeping information about the illness from them, and three (43%) of them were also concerned about others bullying the ill child at school. (...)
Mots-clés Pascal : Rectocolite ulcérohémorragique, Entérite Crohn, Evaluation, Qualité vie, Fratrie, Parent, Exploration, Homme, Appareil digestif pathologie, Intestin pathologie, Maladie inflammatoire
Mots-clés Pascal anglais : Ulcerative colitis, Crohn disease, Evaluation, Quality of life, Sibling, Parent, Exploration, Human, Digestive diseases, Intestinal disease, Inflammatory disease
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 99-0227187
Code Inist : 002B30A01A2. Création : 16/11/1999.