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Abstract

Germany, children’s and youth hospice work is a very dynamic field which, during the last 25 years, has continued to establish, develop and professionalize itself in the German hospice and palliative movement. Since 2015, impulses for quality advancement are given by the “Qualitätsindex für Kinder-und Jugendhospitzarbeit” (QuinK), a non-standardized questionnaire tool which was developed by a research team in cooperation with the Deutsche Hospiz- und PalliativVerband e. V. (DHPV). The process of growth and professionalization in children's and youth hospice work is illustrated by the growing number of inpatient children's and youth hospice establishments and home care services beginning to focus more on the needs of teenagers and young adults with life-shortening diseases. It networks closely with the equally fast-growing structures of pediatric palliative care and finds itself in the center of different interests and perspectives of health care, children's and youth aid, disabled people's aid and palliative care. Therefore, it is essential to focus on one’s own objectives and tasks in establishing a closely-knit support network in order to guide children and youths with life-shortening diseases as well as their families. The preservation and continuous advancement of the quality of the work is a primary concern of children's and youth hospice work so that existing and future challenges can be met with confidence. As a non-standardized and yet very empirical instrument, QuinK can be understood as an opportunity for all contributors to critically reflect on their work from their own perspectives, and compare their work to the goals and principles of QuinK as well as initiate advancements within the individual establishments. It is conceivable and explicitly desired that QuinK be adapted beyond the German children's and youth hospice movement to the specific conditions and structures in other countries.

Biography

Sven Jennessen has his expertise in children's and youth hospice work and in palliative care for people with disabilities. He has developed the instrument QuinK after years of experience in research, evaluation and teaching. He is a Professor for Pedagogy for people with physical disabilities and has another research focus on aspects of sexual self-determination of people with disabilities.

E-mail: sven.jennessen@hu-berlin.de