Study published: Involving informal caregivers to improve support for people with dementia
U-CARE's Research Assistant Ida Österman Menander in dialogue with members of the Public Advisory group during a workshop.
In a recently published study in Health Expectations, researchers from U-CARE explored the experiences, processes, and impact of involving informal caregivers of people with dementia in the development of a psychological intervention. The study highlights the positive role of public contribution in research and strengthening intervention development.
Exploring involvement of informal caregivers
The researchers worked alongside a Public Advisory Group consisting of informal caregivers of people with dementia. One of their task was to help inform the development and adaptation of a guided low-intensity behavioural activation intervention entitled INVOLVERA. The study set out to understand how informal caregivers and researchers experienced their work together, how the collaboration was carried out, and what impact their contributions had on the research.
Important contributions to the intervention
Over the course of nine advisory group meetings, the informal caregivers provided 158 suggestions, with more than three quarters of which were implemented by the researchers. Their contributions helped improve the intervention’s acceptability and relevance in relation to the needs of people with dementia and their informal caregivers. Interviews with both public contributors and researchers showed that the process was valuable not only for the research but also for those involved, who reported gaining new skills and insights.
PhD Candidate Frida Svedin. Photo: Mikael Wallerstedt
Implications for future research
U-CARE’s PhD Candidate Frida Svedin is the main author of the study.
– Our study shows that public contribution have an important role in the development of complex interventions, says Frida Svedin. We also emphasize the importance of involving people with lived experience early in the research process.
Miro Anter
Link to the article
Read the paper ‘Experience, process, and impact of involving informal caregivers of people with dementia as public contributors to inform the development of a complex intervention: A mixed-methods study’. It is written by Frida Svedin, Ida Österman Menander, Oscar Blomberg, Anders Brantnell, Paul Farrand, Theresia Lückner, Kristina Sundelin, Joan Turney, Anna Cristina Åberg, and Joanne Woodford.