gms | German Medical Science

Background: A child with a health impairment or disability places high demands on the family. Studies pointed out that these families are not sufficiently informed about counselling services and support.

Although very different counselling services are available, effective networking is lacking. In addition, the regulations applying to social benefits do not always interconnect, so that comprehensive and preventive offers are rarely realized.

Objectives: The aim is to evaluate the extent to which existing services in the cities of Bonn and Bielefeld meet the needs of families for counselling and support in order to close counselling gaps and further develop family-oriented counselling services.

Design and methods: The participatory study has a Mixed Methods Design. A quantitative questionnaire was used to determine the parents' need for advice and support. In addition, results, problem areas and solution strategies were discussed with parents, self-help representatives and institutional players.

Results: A total of 785 families participated in the survey. Only two-thirds of the families received counselling at the beginning of their child's impairment. One-third of the families received advice on inclusion offers. One in four parents wants counselling services and support especially for the affected child and the siblings. Families have problems finding support services because the counselling and support network is not transparent.

Conclusions: There is a large consulting gap right at the start of the health impairment. Further consulting gaps and problems at interfaces were identified. Parents want holistic counselling that also takes the children into consideration.