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AnNeuro

Campus der Universität Bielefeld — © Universität Bielefeld

Family Members in the Care of Adults with Chronic Neurological Conditions – AnNeuro

Family members as informal bridging actors in the medical care of adults with chronic neurological conditions

AnNeuro is a doctoral research project conducted within the Medical & Clinician Scientist College (MeCS) at Bielefeld University’s Medical School OWL.

The project examines the roles and functions that family members assume in the medical care of people with chronic neurological conditions. Its focus is not only on what family members do in practice, but also on the structural, communicative, and institutional conditions under which such informal family roles emerge.

Chronic neurological conditions may be associated with motor, cognitive, communicative, and everyday functional impairments. As a result, they often give rise to long-term support needs and complex care pathways across different sectors, including outpatient care, hospital treatment, rehabilitation, long-term care, and support under social law.

The aim of the project is to systematically analyse family members as informal co-actors in medical care. It investigates how they contribute to communication, organisation, decision-making processes, and continuity of care, and which structural conditions facilitate or hinder effective collaboration between patients, family members, and healthcare professionals.

Project Description

People living with chronic neurological conditions often require support over the course of illness. Family members assume a wide range of tasks in this context: they organise appointments, convey information, support communication with healthcare professionals, accompany decision-making processes, and help coordinate different care services.

AnNeuro analyses these forms of involvement from a multi-perspective health services research approach. Family members are not understood solely as a private support resource, but as informal bridging actors who mediate between patients, healthcare professionals, care institutions, and everyday life contexts.

A particular focus is on how family members’ roles emerge and are stabilised in complex care constellations. The project therefore also considers care situations in which family members are unavailable, are not involved, or cannot be assumed to provide support.

The study focuses in particular on:

understandings of the roles and functions of family members in medical care
triadic interactions between patients, family members, and healthcare professionals
communicative, organisational, and decision-related forms of support
negotiation processes between autonomy, participation, and support
cross-sector care pathways and transitions between care settings
structural conditions in outpatient, inpatient, and rehabilitative care contexts
care situations with and without available family members

Project Duration and Funding

Funding period:
1. October 2024 - 30. September 2028

Funded by:
Federal Ministry of Research, Technology and Space

Project Lead and Team Members

Doctoral Researcher

Kristina Ottersbach
B.A. in Sociology
M.Sc. in Public Health

Research Group Sustainable Environmental Health Sciences
Medical School OWL
Bielefeld University