Smyth, Nina, Ahmad, Ammarah, Begum, Samina, Chaudhry, Ashish, Clark, Sophie, Wright, Alexa, Gimblett, Karl, Ridge, Damien, Chew-Graham, Carolyn A., Gopal, Dipesh, Alwan, Nisreen A. and Kingstone, Tom (2026) Co-creating publicly available resources to increase awareness of and support for Long Covid among ethnic minority communities. Health Expectations, 29 (2), [e70596]. (doi:10.1111/hex.70596).
Abstract
Introduction: stigma and discrimination make healthcare challenging for people living with Long Covid, especially those from ethnic minority groups. Since their experiences are under-researched and may differ from other groups, it is crucial that healthcare guidance is informed by the lived experiences of diverse groups.
Methods: findings from underpinning research (hearing from the unheard: Impact of Long Covid in Black and minority ethnic groups in the UK: HI-COVE - 31 interviews with ethnic minority individuals living with Long Covid) informed the development of two resources aimed at raising awareness of the challenges faced by ethnic minority groups and offer ways to best support these groups. People living with Long Covid (N = 4) provided feedback on the two resources. Feedback was guided by a topic guide. Minimal changes were made following feedback.
Results: Resource 1: Four participants who took part in the underpinning research, worked with an Artist (AW) to curate artwork. The artwork created was a video called 'Still Looking for Answers' https://www.youtube.com/watch?v=GDt-Ro1Cql8&t=1s. It comprises anonymised patient narratives and imagery (performed by actors) and a soundscape to convey ethnic minority lived experiences of Long Covid. Resource 2: an online learning tool called 'Health and Social Care PROfessional-Long Covid': H-Pro-LC tool: https://clineduniverse.org/hicove/story_html5.html shares challenges people from ethnic minority groups face when accessing healthcare for Long Covid. The resource includes guidance on supporting people, particularly people from ethnic minority backgrounds, presenting to primary care with (probable) symptoms of Long Covid.
Conclusions: these publicly available resources aim to raise awareness of Long Covid: they encourage viewers to emotionally connect with experiences of Long Covid as well as offer ways to support people living with the condition, particularly among people from ethnic minority groups.
Patient and public involvement and engagement: the underpinning research of these resources were extensively informed by both patient (N = 7) and expert advisory groups (N = 6). Co-creation approaches (through workshops, meetings and written feedback) from people living with Long Covid, carers, stakeholders and members of the public informed the design, development, innovation and impact of resources developed. People with lived experience of Long Covid provided feedback on the resources developed in this study.
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