How public involvement led the project to focus on the mental health needs of carers

Summary
Heavily co-produced research with people with dementia, unpaid carers, health and social care professionals, and Charity providers into the impacts of the pandemic on dementia care in the community and in care homes has generated the idea for this funded study into the unmet mental health needs of paid and unpaid carers for older adults. The talk will give a brief overview of the original COVID-19 research, how lived experts and care providers were involved, and provide an overview of the ongoing NIHR-funded study.
Speaker biography
Clarissa Giebel is a Senior Research Fellow at the University of Liverpool. Her research focuses on enabling people living with dementia to live well and independently at home for as long as possible, whilst addressing inequalities in accessing the right care. In addition to working with international collaborators. In addition to holding a Career Development Award from the 3-schools programme, Clarissa leads several dementia and health inequalities projects, including the first Covid-19 dementia study in the country (Impact of COVID-19 on dementia social care - Aging & Mental Health).
Clarissa leads the European INTERDEM Taskforce on Inequalities in Dementia Care and the Liverpool Dementia & Ageing Research Forum, hosting bi-monthly free public seminars. You can hear Clarissa talk about science and ageing at The Ageing Scientist podcast.
Seminar series editor commentary and highlights
In her presentation, Clarissa provided a masterclass on how to engage with an underserved, seldom-heard group, in this case, people with dementia and the people who care for them. Clarissa’s approach reminds us, however, that engaging meaningfully with people requires time: it is not a short-term fix, but a long-term investment. For Clarissa, this means embedding this approach into multiple aspects of her work. This involves facilitating the Liverpool Dementia & Ageing Research Forum and producing The Ageing Scientist podcast. In doing so, Clarissa places her work squarely in the public domain, improving its accessibility by giving a platform to these less formal ways of sharing research ideas and findings.
Clarissa’s work also demonstrates how members of the public can be involved in the mechanics of research at multiple stages. She describes how they provided new research ideas, undertook data analysis and co-authored a journal article. Again, this raises issues around resourcing, for example, public contributors were given training to undertake the analysis. As Clarissa points out, however, these types of activities have a potentially empowering impact on public contributors by building their capacity and confidence. Reciprocity can be much broader than payment alone.
References and resources
Co-produced research paper from the project:
Impact of COVID-19 related social support service closures on people with dementia and unpaid carers: a qualitative study: Aging & Mental Health: Vol 25, No 7 (tandfonline.com)
Involving the public in data analysis:
Involving service users in the qualitative analysis of patient narratives to support healthcare quality improvement | Research Involvement and Engagement | Full Text (biomedcentral.com)
Thinking more widely about reciprocity:
Researching Mental Health in Minority Ethnic Communities: Reflections on Recruitment - Jorun Rugkåsa, Krysia Canvin, 2011 (sagepub.com)