Introduction
disability or chronic illness
The NEST project (German acronym for, Strengthening and relief for families with children in need of care through family health partners in regional NEtwork STructures‘) starts facing the problem that families with children with severe health problems due to disability or chronic illness are exposed to strong emotional, social, economic and temporal burdens [The overarching objective of the project is the implementation and evaluation of an innovative support service that addresses the problem. The support by so-called Family Health Partners (in German: ‘Familien-Gesundheits-Partner’ or FGP) aims to provide needs-based, individual counseling for all members in affected families to reach the best possible physical, psychological and participation-oriented care for children in need of care; and thus relieving the family members who spend much time for care and assistance of their child. The intervention to be evaluated here with regard to its effectiveness (processes and structures) was summarized in line with the terms of FGP. This personalized approach, which is embedded in the regional network, aims to provide “holistic” support for families with children in need of care. This means that the needs of the families are defined individually and independent of sectoral or service provider specific offers (structured assessment).The needs of families not only relate to medical, nursing or therapeutic care, but also to assistance regarding social law, economic and bureaucratic advice as well as addressing social, psychosocial and emotional needs and social participation. Based on the identified need for support, affected families are individually accompanied by FGP over a certain period of time (in the project context: more than four times a year). The medium-term goal of FGP support is to strengthen or preserve the family as a self-help system, i.e. self-efficient, independently acting primary resource for the care and support of their children (preventive).