Family health partners in regional network structures (NEST): A non-randomized controlled trial among parents of chronically ill and disabled children

BACKGROUND: The overarching project goal is to evaluate the effectiveness of a cross-sectoral and cross-service provider offering professional support for families with chronically ill and disabled children: so-called Family Health Partners (in German: 'Familien-Gesundheits-Partner' or FGP). This needs-oriented service, which is anchored in regional networks, aims to provide 'holistic' support for families with children in need of care.

METHODS: We are carrying out a non-randomized controlled trial with four points of measurement (t0-t3 in 18 months), beginning in January 2022. Both intervention and control group include 102 families. Primary outcome measure is the quality of life, secondary outcomes are resilience factors and associated measures as well as the access to care. Multilevel regression models will be used to analyze the longitudinal data.

DISCUSSION: The strength of this study is that it looks at the health and resilience of all family members involved by examining how a FGP can influence the entire family system with regard to increasing quality of life, resilience and self-efficacy. The network structures of FGP also open up better to previously unknown regional supply offers. There are, however, a number of limitations (e.g. type of outcomes, sample size).

TRIAL REGISTRATION: This study was first registered on the German Clinical Trials Register before enrolment of participants started (ID: DRKS00027465, 4 January 2022). In order to promote its dissemination, it was also retrospectively registered on ClinicalTrials.gov (ID: NCT05418205, 14 June 2022).