The impact of care on family and health-related quality of life of parents with chronically ill and disabled children

Abstract

Future interventions should focus not only on the affected child but also on the whole family system and its social integration, as this seems likely to relief parents from burden of care. Therefore, a sustainable cooperation of health care institutions and professionals with self-help groups and parental initiatives is recommended. Implications for Rehabilitation Parents of disabled and chronically ill children are a vulnerable group regarding their health-related quality of life. A higher burden of care is associated with less social contacts, higher financial burden and higher help-needs in the household, which significantly contribute to higher health risks. Rehabilitation should take these constraints into account and put a stronger focus on the family of disabled and chronically ill children to support their inclusion. A sustainable and formally anchored collaboration with self-help and patient groups is recommended.