This project seeks to assess the impact of family participation on the burden of disease of people with dementia. It uses an embedded, sequential research design involving qualitative and quantitative research methodologies incorporated within an action research approach.
For people with dementia in long-term care facilities (LTCFs), not only a frequent assessment of their needs essential, but also close communication between their careers. Their complex situations must be continually reviewed, and adjustments to their therapy plans are critical. Notably, there is a dearth of research on the participation of people with dementia, their family members and frontline staff in end-of-life care processes with Plan-Do-Check-Assess (PDCA) cycles and their involvement in everyday care decisions in LTCFs. In addition, best practices for the care of people with dementia that include all four target groups, namely, people with dementia, their family members, and frontline staff have not been tested in Swiss LTCFs.
The objectives of this study are as follows: (1) to give a voice to family members of people with dementia by developing and implementing a person-centred framework for family participation in LTCFs with Patient and Public Involvement (PPI) participants; and (2) to determine the impact of person-centred framework for family participation in LTCFs (intervention) on the burden of disease of people with dementia (primary endpoint), measured by the Integrated Palliative Care Outcome Scale for Dementia (IPOS-Dem), and the secondary endpoints (QUALIDEM, Person-Centred Practice Inventory (PCPI), minimum dataset (MDS)), with a stepped wedge randomised controlled trial (SW-CRT). Therefore, the primary aim of the ERNA study is to assess the impact of family participation on the burden of disease of people with dementia in LTCFs.
The ERNA study uses an embedded sequential, mixed method research design involving distinctive qualitative and quantitative research methodologies and methods (i.e. focus-groups, survey research, SW-CRT) incorporated within an action research approach.
The results from the proposed study will bridge the current gap within Palliative Aged Care everyday care decisions and systematically prepare Swiss LTCFs to implement evidence-based knowledge and collaborate with family members in Palliative Aged Care everyday care decision-making processes.
- University of Lausanne: Prof. Phil Larkin, Dr. Eve Rubli Truchard, Dr. Mathieu Bernard
- Dr. Francesca Bosisio, UAS Western Switzerland, School of management and engineering of the Canton Vaud (HEIG-VD), Interdisciplinary Institute of Business Development
- Dr. Andreas Büscher, UAS Osnabrück & German Network for Quality Development in Nursing
- Dr. Martin Nagl, University Vienna, Head of Department of Nursing Science
Clinical side partners:
- Pflegeheim Sennhof, Canton of Aargau
- Lindenfeld, Canton of Aargau
- Alterszentrum «Im Brüel», Canton of Basel-Land
- Dahlia Oberaargau, Canton of Bern
- Alterszentrum Alenia, Canton of Bern
- Haslibrunnen AG, Canton of Bern
- Sunneziel Meggen, Canton of Lucerne
- Viva Luzern (n=3 nursing homes), Canton of Lucerne
- Alterszentrum Emmersberg, Canton of Schaffhausen
- AZ Gaeu, Canton of Solothurn
- Alterszentrum Bussnang, Canton of Thurgau
- Alterszentrum Weinfelden, Canton of Thurgau
- Seniorenzentrum Naters, Canton of Valais
- Haus St. Theodul, Canton of Valais
- Haus der Generationen, Canton of Valais
Patient and public involvement partners:
- Alzheimer Switzerland
- Langzeit Switzerland
A partnership with ‘Pro Infirmis’ has also been established to support our easy-language approach