Development and evaluation of a technology-assisted counselling intervention for family caregivers of people with dementia - Program theory and preparation of a Core Outcome Set (ProCOS)

• Applicant: Dr. Dorothee Bauernschmidt
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: since 2023
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 533628714

Background: Due to the increasing number of people with dementia, the need for family and professional support is growing. Counselling services are one form of support for family caregivers. The use of communication technology to improve accessibility to counselling has been discussed against the background of the SARS-CoV-2 pandemic. There is no clear evidence on the effectiveness of technology-based counselling in dementia. Few randomised controlled trials have been conducted examining a variety of outcomes. In most cases, the development and evaluation of these complex interventions were not guided by theory. Aim: To formulate an initial program theory of a technology-assisted counselling intervention for family caregivers of people with dementia and to generate the data basis for the consensus process of a Core Outcome Set (COS). This will form the basis for the theory-led development, implementation, and evaluation of such an intervention to support family dementia caregivers. Methods: In an innovative methodological approach, the methodological strands for developing a program theory and a Core Outcome Set will be integrated. Within the scoping review, data on the characteristics and theoretical foundations of counselling interventions as well as the outcomes examined in clinical studies will be collected. In addition, a qualitative sub-study will be conducted to explore the lifeworld perception of relevant stakeholders on the importance of counselling in family caregiving from a phenomenological perspective using semi-structured interviews. The focus is on the experiences and the expectations of family caregivers and people delivering counselling, as well as on the effects that can be achieved through counselling and how these effects can be assessed. The synthesis of data from the literature review and the qualitative sub-study will be performed through the development of the logic model. Mechanisms of action and assumed causal relationships are made explicit in the elements of program theory (Theory of Change, Outcomes Chain, and Theory of Action) and an initial program theory is formulated. Expected results: A systematic overview will be provided on the components of counselling interventions and their intended effects as well as on the theoretical foundations. Apart from this, a compilation of outcomes ('long list') will be created, summarizing outcomes already examined and outcomes suggested by the stakeholders interviewed. Furthermore, commonalities and differences in the stakeholders' subjective perspectives and relevance structures become visible, which will be incorporated into the program theory of a technology-assisted counselling intervention for family caregivers of people with dementia.

• DFG Programme: Research Grants