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

Abstract

Purpose: Parents of disabled and/or chronically ill children are more vulnerable regarding their health compared to parents of healthy children. This study examines how far the burden of care is associated with health-related quality of life (QoL) in parents, across different illnesses and disabilities. Moreover, it is unclear whether and to which extent familial resources can explain the association between parents’ care burden and health. Method: Data stem from a survey with the German Children’s Network, a self-help umbrella organization of parents and families of chronically ill and disabled children. Data collection was conducted nationwide with a standardized online questionnaire, which included children’s diagnoses and severity, burden of care, family and socioeconomic status, health-related QoL (SF-12) and family impact (Impact on Family Scale, IFS). 1567 parents participated. Results: A higher burden of care is associated with higher risks for poor health-related QoL. Especially, social impact and financial burden, which are both associated with care, can help to explain these associations. Conclusions: 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.

• Burden of care
• chronically ill and disabled children
• family care
• quality of life
• self-help groups

Acknowledgements

We would like to acknowledge the helpful contribution of the German AOK Bundesverband and the German Children’s Network (Kindernetzwerk e.V.). We thank the members, parental initiatives and co-operation partners of the German Children’s Network for their comprehensive support in conducting this study. We especially thank the parents for the great trust they have placed in us by participating in the survey, in particular, for criticism, their many examples and further suggestions, the invaluable insights into concerns and needs as well as positive experiences.

Declaration of interest

This study has been funded by the German AOK Bundesverband.