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)
Final Report Abstract
Due to the increasing number of persons with dementia, the need for family and professional support is growing. Counselling services may relieve family caregivers. The use of communication technology (ICT) to improve accessibility to counselling has been discussed against the background of the SARS-CoV-2 pandemic. There is no reliable evidence on the effectiveness of technology-based counselling in dementia. Only few randomised controlled trials have been conducted addressing a broad range of outcomes. In the majority of trials, the development and evaluation of these complex interventions were not theory-guided. 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). The methodological approaches for developing a programme theory and a COS were combined. Within the scoping review, data on the characteristics, theoretical foundations and the implementation of counselling interventions as well as the outcomes examined in clinical studies were collected. In a qualitative sub-study, the experiences and expectations of family caregivers and counsellors were explored using semi-structured interviews. The transcribed audio recordings of the interviews were analysed applying an interpretativephenomenological approach. The synthesis of data from the literature review and the qualitative sub-study was performed through the development of drafts of the logic model and an initial programme theory. We included 69 publications reporting on 34 technology-assisted counselling interventions for family caregivers of persons with dementia. Studies were from eleven countries and published between 1995 and 2024. Within the qualitative sub-study 15 family caregivers and 12 counsellors were interviewed. Findings show that various ways to access counselling services should be offered and that personal and technology-mediated contacts should be combined individually. Access to counselling and maintaining contact can be promoted by linking with other support services and through outreach activities. The working conditions for counsellors are essential for the quality of counselling. In addition, consensus between the provider organisations and the counsellors on the design of the services is important for successful implementation. The findings contribute to improving access to counselling through use of ICT and create the basis for the theory-guided development, implementation and evaluation of these complex interventions.
Publications
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Bringing together programme theory and Core Outcome Set development in technology-assisted dementia counselling – the ProCOS study. 25. Jahrestagung des Netzwerks Evidenzbasierte Medizin, 13.-15.03.2024, Berlin.
Bauernschmidt, D., Wittmann, J., Bieber, A. & Meyer, G.
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Integrating programme theory into the development of a core outcome set for technology-assisted counselling interventions in dementia: study protocol of the ProCOS study. BMJ Open, 14(8), e081526.
Bauernschmidt, Dorothee; Wittmann, Janina; Bieber, Anja & Meyer, Gabriele
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Technologie-unterstützte Beratung für pflegende Angehörige von Menschen mit Demenz – Wie wird eine Beratungs-Intervention entwickelt und wie können pflegende Angehörige daran mitwirken? Thüringer Woche der pflegenden Angehörigen, 03.-09.06.2024, online.
Bauernschmidt, D.
