Abstract

The first Children's Hospice in Germany was founded 1998. At present, there are 10 Children's Hospices which offer short breaks and 73 ambulant Children's Hospice services which provide support at the family's home.

The aim of the first main study in the field of Children's Hospice services in Germany was to find out if Children's Hospices services offer the families the support they need, and how they evaluate the quality of the offers. Another aim was the development of guidelines for “Good Children's Hospice services”.

In a first step in the mixed methods design 10 families who use the offers of Children's Hospice services were interviewed. Based on the results of this survey, a questionnaire was developed, and answered by 172 families.

The findings showed that the offers of Children's Hospice services in Germany match the needs of families. 93% of the parents are ‘very satisfied’ or ‘satisfied’ with the support of their child or adolescent during a short break. 75% of the families are ‘very satisfied’ or ‘satisfied’ with the ambulant Children's Hospice service. However, there need to be made improvements in a number of areas, such as bereavement services, siblings support, cultural diversity, gender care and public relations.

The results of the study illustrate that the aim to offer support for the families already reaches them. The findings may help to establish Children's Hospice services in Germany and thereby help to secure its future funding. The guidelines for “Good Children's Hospice services” are currently being discussed in many Children's Hospices services. They will be evaluated in a follow-up study.