Towards Participation - changing barriers to the systematic participation of informal care-givers in the psychiatric and psychosocial treatment system in Germany.

• Applicants: Professor Dr. Sebastian von Peter; Dr. Sven Speerforck
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine ; Clinical Psychiatry, Psychotherapy, Child and Adolescent Psychiatry
• Term: since 2022
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 499962953

Informal caregiver as a term refers to people that provide unpaid, ongoing assistance to persons, who suffer from acute or chronic conditions. Informal caregivers are a significant but underrated resource for the treatment of people with mental illness. Both nationally and internationally, approaches are lacking that focus on meaningful and systematic participation of informal caregivers in mental health care, due to a lack of research, standards, and funding. Following this observation, this proposal seeks to find answers to two research questions: 1) Is there a lack of suitable, accepted, and/or effective interventions, specifying the exact roles and functions of caregivers during processes of participation, thus preventing their widespread implementation? Or 2) is it rather the case that there have been numerous such interventions, but they have lagged behind in general implementation into daily practices? In accordance with these questions and the Medical Research Council (MRC) guidelines for the evaluation of complex interventions, this proposal complies with basic, theory-oriented and exploratory goals. It aims at 1) examining the existing evidence on the participation of caregivers in mental health care, 2) analyzing existing barriers from a trans-disciplinary perspective, 3) investigating the stakeholders’ needs, and 4) translating these needs into concrete requirements for policy and practice. Following the guidelines for participatory health research, this proposal has been developed jointly with members of a caregiver association, leading to objective 5), the systematic analysis of a research collaboration with this stakeholder group.To fulfill these aims, a mixed method, trans-disciplinary research design will be used, involving a participatory realist review, both a cultural-historical and multi-stakeholder assessment of needs and barriers, and various methods, such as a standardized survey, expert interviews and focus groups. The results will be collaboratively discussed and translated into concrete policy and practice related recommendations, and the participatory research approach systematically reflected upon.

• DFG Programme: Research Grants
• Co-Investigator: Professor Dr. Georg Schomerus