Co-designing a toolkit to improve inclusion of underserved groups in dementia and hearing research
Background. Both dementia and hearing loss are major public health concerns. Each condition is extremely common and increases with age, and among certain populations (e.g. care homes, the oldest old) many people have both. Hearing loss has been shown in several studies to predate the incidence of dementia and it has been estimated that it contributes about 9% of the total modifiable risk for dementia. Currently, researchers are investigating the mechanisms by which hearing loss might contribute to future dementia and whether hearing interventions might reduce the risk of subsequent dementia in people with hearing loss or improve outcomes in people who already live with comorbid dementia and hearing loss.
To improve future care for individuals living with these conditions and their families, our research team is currently identifying priority areas for future research in consultation with patients, carers, and clinicians.Some groups are more likely to experience dementia or hearing loss, and have worse outcomes if they do. Assessment, diagnosis, and treatment of dementia and hearing loss has been less inclusive of certain groups over others. Many research studies and trials have also been less inclusive of these groups. Groups who are more likely to experience these conditions, have worse outcomes, or are less included are called ‘underserved’. Under-served groups in these conditions may include people from Black, Asian and minority ethnic backgrounds, people who identify as LGBTQ+, the Deaf community, people living in socio-economically deprived areas, and people living with multiple health conditions.
The project. We are conducting a co-design study to find new ways to make sure that under-served groups are included in future research about dementia and hearing conditions. A multi-stage Experience-Based Co-Design process will be carried out either remotely or face to face. This is an established participatory action research method. The participants will be individuals living with dementia, their care partners/relatives, individuals living with hearing conditions (e.g. hearing loss, tinnitus), individuals who are members of under-served groups, and professionals from research, health/social care or the charity/voluntary sectors. Participants will take part in co-design meetings and workshops to (a) identify priority barriers to target and (b) develop and contribute content to create a new toolkit of resources and strategies designed to tackle barriers to research participation for underserved groups.
You will gain extensive and varied experience of fieldwork.
You will have the opportunity to:
- Gain experience in participatory action research and learn about co-design methods.
- Co-facilitate focus-groups and analyse qualitative data.
- Help design materials to make research more inclusive.
- Gain Patient and Public Involvement/Engagement experience.
- Network with senior academics and clinicians in dementia and hearing research.
- Attend lab group meetings, where you will learn about a range of projects in hearing and dementia research.
- Be supported to obtain funding to present at a conference.
- Present the research at events (e.g. Project Celebration Event, Institute of Mental Health Research Event), and author magazine articles and blogs about the research.
Training: The student will be trained by the team on participatory action research, including the facilitation of focus groups and analysing qualitative data using NVivo software, scientific writing and dissemination, and have access to a variety of training materials to support their learning. They will be able to access several University of Nottingham training resources, including ‘Foundations in Dementia’, and Audiology Assessment and Care Training, which includes a visit to Nottingham Audiology Services. The student will attend Hearing Sciences and Centre for Dementia seminars, with eminent international speakers, and INTERDEM Academy masterclasses and networking cafés for dementia researchers.