Abstract
Background
This report focuses on the first workstream of the DeNPRU Exeter planned project, Reducing inequalities across the care pathway for minority ethnic communities living with neuro-degenerative conditions. This workstream specifically considered how to address the barriers of lack of awareness
and stigma that discourage people from seeking diagnosis and support.
Method
We identified and examined campaigns aimed at raising awareness or reducing stigma of neurodegenerative conditions in minority ethnic populations. We also identified academic articlesevaluating campaigns and consulted people of minority ethnicities and service providers.
Findings
We found 24 relevant campaigns. Content included perceptions of the condition, early symptoms, the diagnosis process, community/family stigma, faith and spiritual influences, treatment, care and support, and advance care planning. Delivery commonly included personal stories, conversations
between those affected and professionals, creative materials or activities, presenters from relevant ethnicities and use of community languages. Evaluative research was scant with only eight relevant small-scale studies. These found face-to-face seminars, leaflets and videos were all acceptable.
Campaigns had a positive impact on both knowledge and help-seeking.
Consultation confirmed the need for a variety of campaigns in an array of locations targeted to different generations. Consultees valued information from people from their own community and/or educated professionals, using authentic stories and an interactive element. Building long-term
relationships, rather than having one-off campaigns, was seen as vital. Impactful work requires accurate ethnicity data, longer-term funding, culturally aware staff and cross-agency collaboration.
Recommendations
The above, alongside discussion with policymakers, led us to five areas of recommendations (see Summary).
Key recommendations
Sustainability: Long-term relationships are vital to build knowledge and trust and tailor approaches - therefore, there is a need for longer-term funding.
Workforce: Attract staff from diverse communities. Ensure all staff have cultural competence and confidence
Collaboration: Share resources across services and sectors. Collaborate across services to raise awareness across different generations.
Ethnicity data: Ensure ethnicity data are captured, staff know how to
ask and record, and organisations know how to access.
Tailored campaigns: Incorporate culturally-tailored messages and delivery. Embed campaigns in wider initiatives. Link with existing community groups.
Ethnicty Data: Ensure ethnicity data are captured, staff know how to ask and record, and organisations know how to access.
This report focuses on the first workstream of the DeNPRU Exeter planned project, Reducing inequalities across the care pathway for minority ethnic communities living with neuro-degenerative conditions. This workstream specifically considered how to address the barriers of lack of awareness
and stigma that discourage people from seeking diagnosis and support.
Method
We identified and examined campaigns aimed at raising awareness or reducing stigma of neurodegenerative conditions in minority ethnic populations. We also identified academic articlesevaluating campaigns and consulted people of minority ethnicities and service providers.
Findings
We found 24 relevant campaigns. Content included perceptions of the condition, early symptoms, the diagnosis process, community/family stigma, faith and spiritual influences, treatment, care and support, and advance care planning. Delivery commonly included personal stories, conversations
between those affected and professionals, creative materials or activities, presenters from relevant ethnicities and use of community languages. Evaluative research was scant with only eight relevant small-scale studies. These found face-to-face seminars, leaflets and videos were all acceptable.
Campaigns had a positive impact on both knowledge and help-seeking.
Consultation confirmed the need for a variety of campaigns in an array of locations targeted to different generations. Consultees valued information from people from their own community and/or educated professionals, using authentic stories and an interactive element. Building long-term
relationships, rather than having one-off campaigns, was seen as vital. Impactful work requires accurate ethnicity data, longer-term funding, culturally aware staff and cross-agency collaboration.
Recommendations
The above, alongside discussion with policymakers, led us to five areas of recommendations (see Summary).
Key recommendations
Sustainability: Long-term relationships are vital to build knowledge and trust and tailor approaches - therefore, there is a need for longer-term funding.
Workforce: Attract staff from diverse communities. Ensure all staff have cultural competence and confidence
Collaboration: Share resources across services and sectors. Collaborate across services to raise awareness across different generations.
Ethnicity data: Ensure ethnicity data are captured, staff know how to
ask and record, and organisations know how to access.
Tailored campaigns: Incorporate culturally-tailored messages and delivery. Embed campaigns in wider initiatives. Link with existing community groups.
Ethnicty Data: Ensure ethnicity data are captured, staff know how to ask and record, and organisations know how to access.
| Original language | English |
|---|---|
| Type | Policy Research Unit Report |
| Media of output | Online |
| Publisher | University of Exeter |
| Number of pages | 50 |
| Publication status | Published (in print/issue) - 1 Apr 2025 |
