InvolveD Version 1

  • Research type

    Research Study

  • Full title

    Original title submitted to funders: Developing a place-based model of support for people with dementia from ethnic minorities: a participatory research approach. New Title: InvolveD: Involving South Asian, Black African and African Caribbean people in designing better Dementia support.

  • IRAS ID

    340269

  • Contact name

    Karan Jutlla

  • Contact email

    K.Jutlla@wlv.ac.uk

  • Sponsor organisation

    University of Wolverhampton

  • Duration of Study in the UK

    1 years, 9 months, 28 days

  • Research summary

    25,000 people from UK ethnic minority communities have dementia, and this is expected to double by 2026 [1]. More people from these communities will need skilled dementia support however, services are not ready for this. Research shows that many people from these groups do not use dementia services; of those that do use them, many do not find them useful because of cultural/language barriers [5,14,15,16,20,21]. To provide effective support to people from ethnic minority groups, it is important to connect them with service providers/commissioners to understand their sense of the place (experience of belonging in their local community), and what is important to them individually and collectively.
    The aim is to explore and evaluate an approach to working collaboratively with people from ethnic minority communities to develop a place-based model for improved dementia support. We will do this by conducting face-to-face participatory workshops with families affected by dementia and people from South Asian, Black African and African Caribbean backgrounds in Sandwell and Wolverhampton, including health and social care services and local charities, to understand people’s sense of place and how to improve this related to dementia support needs. This information will be combined to produce a model that is inclusive of everyone’s views. Participants from the workshops will be invited to a follow-up session to ensure that this representation is true to their needs and sense of place. We will conduct interviews with members our Advisory Group (people from community organisations, health/social care services, and local charities) and our Experts by Experience (representatives from the target communities who will attend research meetings and co-facilitate the workshops) and some participants from the workshops to review the participatory approach of this project and how to evaluate the impact of the methods we used in further studies.

  • REC name

    South Central - Oxford C Research Ethics Committee

  • REC reference

    24/SC/0348

  • Date of REC Opinion

    29 Oct 2024

  • REC opinion

    Favourable Opinion