Amplifying voices to tackle inequalities in South Asian and Muslim communities

Posted by Zeibeda Sattar, Assistant Professor in Health Policy, Northumbria University

L-R: Greta Defeyter, Humaira Khan and Zeb Sattar 

I recently had the opportunity to chair the Health Inequalities Symposium hosted by the Centre for Health and Social Equity (CHASE) at Northumbria University, in collaboration with Fuse. It was an incredible event that brought together over 100 people, including researchers, policymakers, healthcare providers, and community members, all focused on tackling the pressing health challenges facing South Asian and Muslim (SAM) communities. The main goal was clear: to find ways to bridge the gap between research and real-world impact.

The presentations were enlightening and underscored how critical it is to engage with minority communities effectively to shape public health services. Each speaker highlighted a different, but equally important, health issue impacting SAM communities. Public partner Humaira Khan, who co-chaired the symposium, pointed out that the mental health challenges facing South Asian and Muslim are often misunderstood and stigmatised. Hearing her talk about the need for culturally competent healthcare really hit home. Her words - “researchers are warriors; they don’t fight for themselves - they amplify the voices of the people” - perfectly captured why events like this matter.

“researchers are warriors; they don’t fight for themselves - they amplify the voices of the people” 

Humaira Khan, public partner

Dr Sarah Croke from the University of Manchester spoke about the language and cultural barriers that often lead to untreated health issues. This can leave community members struggling because healthcare services aren’t designed with South Asian and Muslim needs in mind. Dr Saeed Ahmed from Sunderland Royal Hospital took on the tough topic of organ donation disparities. He pointed out the harsh reality: SAM communities are in desperate need of organ transplants but are also among the least likely to donate. His call to raise awareness and educate was powerful, especially when he reminded us that one donor can change up to nine lives.

There were also discussions about everyday barriers that many of us face but rarely see addressed. Professor Defeyter from Northumbria University talked about the lack of culturally appropriate meals, like halal options, in schools. It was a reminder of how even things like food choices can create a sense of exclusion for our children and why legal changes to recognise cultural diversity are long overdue.

I found Simon Luddington’s (SearchNewcastle) presentation about the West-End Befrienders project particularly inspiring. It’s easy to forget how isolating language barriers can be and how vital social connections are for our wellbeing. Their work in bringing people together, especially in helping with access to primary care and breaking down isolation, felt like a model that should be replicated.

One of the more challenging discussions was around drug and alcohol use in our communities. Lydia Lochhead’s (Northumbria University) research laid bare the stigma that prevents so many from seeking help. It’s a tough conversation to have, but hearing about Mushtaq Dakri’s community-led approach to addiction support was a beacon of hope. They offer a holistic service - combining therapy, physical activity, and spirituality - and it’s designed by and for the SAM community. Knowing there’s a women-only support space now available shows their commitment to evolving and meeting community needs.

Fuse Associate Director Dr Floor Christie and Dr Rawand Jarrar from Sunderland University, wrapped up the day with their work on improving cancer screening uptake among Muslim women. Their workshops have reached over 260 women, and it’s encouraging to see how culturally sensitive approaches can genuinely improve health outcomes. This was a reminder of how vital it is to build services that reflect our communities.

As I reflect on the symposium, it’s clear to me that these health inequalities are not just about accessing services - they’re about how these services are designed and delivered. The urgency to address these gaps cannot be overstated. The event reinforced the need for services that truly understand and respect South Asian and Muslim communities, going beyond just offering a service to creating environments where people feel welcomed, understood, and valued.

Leaving the symposium, I felt hopeful. Change is possible, but it won’t happen without consistent engagement with our communities. Trust needs to be built, and community voices must be represented and acted upon. The gap between research and impact can be bridged if we keep pushing for culturally relevant, accessible, and respectful health services.

Plans are already in place for a follow-up symposium in November, focusing once again on the health inequalities that continue to affect SAM communities. I urge everyone to get involved. This is our chance to be part of the change and to make our voices heard in the ongoing fight for a more equitable health system. Sign-up details will be shared soon, and I hope to see more of us there - because turning these conversations into action is how we create a healthier future for all of us.

School's out for stigma: Understanding the mental health needs of LGBTQ+ youth

Posted by Liam Spencer, Fuse Associate and Research Assistant at Newcastle University

February is LGBTQ+ History Month, an annual month-long observance of lesbian, gay, bisexual and transgender history, and the history of the gay rights and related civil rights movements. The 2024 theme celebrates LGBT+ peoples’ contribution to science and medicine both historically and today. 

In this blog, Liam reflects on his research of LGBTQ+ young people’s mental health.

As LGBTQ+ History Month unfolds, it offers us an opportunity to reflect on the strides we’ve made, the challenges we still face, and the incredible diversity within our communities. This month holds particular significance for me – a chance to not only honour the struggles of those who came before us, but also to celebrate the progress we’ve achieved and recommit to the work that lies ahead.

With a background in youth and community work practice, my research interests are primarily focused on children and young people’s mental health, particularly early and preventative interventions, and school-based interventions. My journey as a member of the LGBTQ+ community and as a researcher has been intertwined with a deep sense of purpose – to shed light on the unique mental health challenges faced by LGBTQ+ individuals. This is a mission born out of personal experience, and a desire to contribute meaningfully to the wellbeing of this community. 

I have recently been involved in several Fuse projects funded by the NIHR School for Public Health Research (SPHR) Public Mental Health programme, and I’ve had the privilege of being able to delve into the complex dynamics of LGBTQ+ mental health, particularly in school environments. One of these projects, led by Professor Liz McDermott, aimed to investigate the impact of school-based interventions on LGBTQ+ young people’s mental health.

In the first phase of our study, we did a realist review (a type of evidence review that assesses the specific contexts in which a certain intervention may or may not work) of published evidence and identified positive interventions that supported LGBTQ+ mental health in school environments. However, the focus tended to be upon outcomes and studies rarely detailed underlying processes. The second phase of our study aimed to develop a theory that explained how, why, for who, and in what context school-based interventions prevent or reduce mental health problems in LGBTQ+ young people, through participation with key stakeholders.

We interviewed LGBTQ+ young people aged between 13 to 18 years attending secondary schools; intervention practitioners; and school staff in the UK. We then analysed this data to identify relationships across different interventions that improved mental health outcomes. The theory we produced explains how school-based interventions that directly tackle dominant cisgender and heterosexual norms can improve LGBTQ+ pupils’ mental health. Specifically, our theory proposes three interventions that may improve these outcomes:

1. Interventions that promote LGBTQ+ visibility and facilitate usualising, school belonging, and recognition.
2. Interventions for talking and support that develop safety and coping.
3. Interventions that address institutional school culture (staff training and inclusion polices) that foster school belonging, empowerment, recognition, and safety.

Ultimately, our research underscores the importance of providing a school environment that affirms and normalises LGBTQ+ identities, promotes school safety and belonging, and addresses systemic issues within educational institutions. By implementing evidence-based interventions informed by our theory, we can pave the way for improved mental health outcomes for LGBTQ+ pupils.

This month serves as a powerful reminder of our collective resilience, our shared struggles, and our unwavering commitment to justice and equality. Let us continue to push boundaries, challenge norms, and advocate for a world where difference is celebrated and all are embraced for who they are – within academia, our personal lives, and beyond.

Adapted with thanks to the PHSI EDI Committee Newcastle University

Images:

Image 1: courtesy of Schools OUT LGBT+ History Month 2024

How do we improve diversity in research?

Posted by Vicki McGowan, Research Associate, Newcastle University

Public involvement and engagement in research is not a new concept. Without members of the public engaging with our work as participants, we would not have advanced our knowledge and understanding of the social world over the last few hundred years. More recently the Covid-19 vaccination would not have been so rapidly produced without generous support from the public in giving up their time (and bodily fluids) to advance our understanding. What seems to be a more relatively recent idea is the involvement of the public in developing the research itself and setting the agenda based on their experiences. Newer still is the idea that there should be a diversity of voices at the table where these decisions are made. In 2014 the Due North report made a series of recommendations to address inequalities between the North and South of England.

In order to take forward these recommendations academics across the North developed the Fuse led Equal North network which aimed to build a community of academics, policy makers, and practitioners across the region to work collaboratively on addressing the North-South health divide. This community came together in workshops to identify priorities for addressing this spatial inequality, and around 250 professional participants highlighted poverty, austerity, and unemployment as key research areas to ‘level up’ the northern regions (Addison et al, 2019).

Equal England academic and practitioner priority setting workshop hosted by Fuse

But, this was only one part of the story.

It was an important side of the story, and I’m sure many members of the public would agree that poverty, austerity, and unemployment were – and indeed are – priority topics, but we needed their perspectives to ensure we were developing research that addresses these drivers of inequality and doesn’t widen them further.

But also, we’d been talking about tackling inequality at the same time as maintaining unequal access to decision-making by not including all key stakeholders in the discussion. So, when the NIHR School for Public Health Research funded the expansion of Equal North to become Equal England, we increased our practitioner membership to over 800, but we also ensured that we could take forward recommendation 3 from Due North: 

“Share power over resources and increase the influence that the public has on how resources are used to improve the determinants of health”

The Equal England Public Network was born in late 2019. Following the practitioner model developed in Equal North, we aimed to create a space for members of the public to share lived experiences and influence the work that we do and undertake some public priority setting exercises to see how these align with the Equal North work. We’d also share information about key events, new evidence, and generally keep people updated with health inequalities research as we do the practitioner network.

That was the plan, now the action. How do you develop a diverse network to engage with members of the public with lived experience of poverty, austerity, and unemployment?

One option could be to contact the numerous, and brilliant, existing Public and Patient Involvement (PPI) groups that operate across the country. Why reinvent the wheel? If that wheel only comes in one style and doesn’t fit my bike then we may have a problem. These established groups might not accurately represent the diversity we see in our communities.

Also, these can be established groups that by their tenure already have the confidence and capacity to exert influence over research agendas and I wanted to make sure we had representation from people who don’t usually have their voices heard in the communities that are affected by the priority areas identified through Equal North.

To ensure we were accessible to a diversity of voices we aimed to pilot the network in North East England to build on the Equal North findings and implement three phases:

Phase 1: Connect with local grassroots groups that are embedded in their communities, promote the network at relevant community events, generally get out into communities across the North East and get to know people, develop trust and sign people up to our mailing list.

Phase 2: Invite members to a series of local conversations, present the findings from Equal North and discuss whether people thought these were important for their communities, whether there were other priorities, and what we needed to do to address them.

Phase 3: Co-develop research proposals around these priorities and dissemination activities with academics and practitioners – making sure the public experiences were disseminated widely and incorporated into future planning.

By February 2020, Phase 1 was going well with 35 members of the public signing up to the network. And then…

We were forced to cancel all face-to-face activities due to Covid-19. The country shut down and the vast majority of people I’d engaged with over the past few months were now focused on supporting their communities through the crisis.

People are furloughed and so volunteer at food banks, people lose their jobs, they lose loved ones to the virus, the grassroots level is not interested in me trying to encourage them online to talk about inequalities that PRE-EXISTED the virus and are now being made even worse. The public network gets locked down and we pause activity thinking it won’t be long before we’re back chatting over coffee.

A year later and we’re still not able to get together in person and our coffees are stone cold! However, during this time of crisis I focused on maintaining the network rather than trying to grow it. I kept in contact with our members via the mailing list and shared opportunities for engagement and to participate in, and develop, research. It didn’t seem right to actively pursue growth during a pandemic but, as our members represent wider groups within their communities, they have shared these opportunities and this has resulted in more members of the public signing up. We now have 57 official members from across the country who have been supporting and influencing the work we do. Amazingly during a pandemic, our public partners have supported the development of several health inequalities projects, contributed to covid-related inequalities research and influenced decisions over national priority funding around inequalities and prevention from the NIHR Applied Research Collaboration (ARC).

Key messages for ensuring diversity in research 

Identify trusted partners

Engage with your existing networks but identify people who are already trusted in their community. These people are probably the most important, whether we’re in a Covid or non-Covid world. Find them and work with them. Approach grassroots organisations, church leaders, sports groups, charities, hang out in coffee shops, community centres, pubs (when permitted!).

Actively seek out diverse groups

Don’t assume members of diverse groups will respond to your advert on Twitter, you must actively engage with groups and organisations that represent marginalised communities. If you’re unsure use tools like PROGRESS+ and HIAT as a guide to check you’re providing equity of access for members of diverse communities (these consider ethnicity, LGBT+, rural/urban, age, disability, economic disadvantage etc.).

Boots on the ground

Leave the comfort of your (home) office! Opportunity does not knock at your door, you need to go out and seek it. Pre-Covid this means being present in community spaces, libraries, coffee shops, markets and schools. During Covid this means using existing networks, online sessions, and setting up WhatsApp groups.

Give something back

Always give something back, that may be reimbursing people for their time or providing opportunities for training and skills sharing – and here I don’t just mean assuming we have skills that they want, perhaps members of the community want to share their skills with us. Develop reciprocal relationships, don’t just take from communities to boost your career!

Be patient

Developing trusted, meaningful, and reciprocal relationships takes time. Be patient. Do not underestimate how long it can take – I’ve been working with some groups for 6 years!

Manage expectations

But if you don’t have 6 years, be honest with people that your work is time sensitive and clearly articulate what you need and how people will be reimbursed if they’re able to help you. Don’t promise the moon on a stick if you can’t deliver!

Finally, blogs are also a great way to connect with diverse groups so don’t forget to add some shameless promotion: if you’re a member of the public reading this and would be interested in joining our network you can sign up here.

For more information about the development of the network, and other experiences of improving diversity in research, you can view a recording below of a recent joint NIHR School for Public Health Research / School for Primary Care Research webinar.