Participatory Research Fund

Professor Abigail Harrison Moore

Working with the Preservative Party, a diverse group of 14-24 year old volunteer youth curators at Leeds City Museum, this project will produce a podcast ‘Whose power?’ to explore and evidence the possibilities and benefits of using the co-production of a podcast as a participatory method. 

This group of young people want to speak up, but are restricted by their social, educational, economic and personal experiences – the majority of its members are neurodivergent and/or live with mental health challenges. The podcast has shown itself to be a powerful tool for effective participation – we have already experimented with this method and started to explore together its significant and previously unforeseen benefits.

Series 2 of the podcast ‘Whose power?’ will explore, evaluate and communicate the impact of this innovative method on the development of the group’s participatory research skills and their ability to communicate why podcasting enables them to advocate for more public and community involvement in museums and collections’ interpretation. 

Using a case study approach, we will develop our knowledge of the podcast as both method and effective output to examine and articulate the complexity and benefits of participatory methods. 

Dr Katie Gathercole, Dr Kimberly Petersen, Fiona Harrand (Leeds Medical Needs Teaching Service)

When children and young people are out of school for medical reasons, they become isolated from their friends and school. This project aims to increase understanding of learner isolation in partnership with children and young people who are users of the Leeds City Council Medical Needs Teaching Service (MNTS). Children and young people who use the MNTS will help to design and conduct the research.

We will develop principles for reducing learning isolation and share these with individuals interested in the education of learners with medical needs. We will also consider the best way to produce research in partnership with children and young people who may be isolated and prevented from meeting other people face-to-face. 

This project meets Leeds City Council areas of research interest in ‘Health and Wellbeing - Integration of health and social care and community support in reducing health inequalities,’ and Inclusive Growth.

We will promote inclusive education practices enabling children to make academic progress while out of school. The project aims to address inequality in education by identifying ways to reduce learner isolation. It will generate economic and societal impact by supporting children with medical needs to thrive as they grow up, having the same opportunities as their peers who receive education at school. 

Melissa Kirby, Amy Russell, Fran Rodgers (Purple Patch Arts) and Purple Research Group

People with learning disabilities are often excluded from research, and when they are involved, engagement can be tokenistic, poorly planned, under resourced and fail to change power dynamics. This research seeks to change this.

Through a partnership with Purple Patch Arts and researchers with learning disabilities (the Purple Research Group), and consultations with academics, we will develop guidance and resources that support researchers to develop inclusive ways of working.

Two resource suites will be co-developed:

• Resource suite one will share practical guidance for undertaking participatory research with people with learning disabilities.
• Resource suite two addresses the lack of guidance on discussing research in accessible ways. This resource will provide accessible explanations of research terms and concepts, alongside arts-based and creative approaches to engaging people with learning disabilities in the research process.

Together, these resources will upskill researchers and advocate for the active involvement of adults with learning disabilities in research.

The development of more inclusive research practices will empower people with learning disabilities to have their say in research across any discipline, resulting in a more inclusive research culture which tackles the social exclusion and inequalities experienced by this community. 

Tom Crocker, Farhat Mahmood (Leeds Institute of Health Sciences) and Louisa Burton (Leeds Institute of Health Sciences)

Stroke affects 100,000 people every year in the UK. For many, it causes long-term disability, including difficulty with moving, thinking and communicating.

People from South Asian backgrounds have a higher risk of stroke. Typically, the results are worse than for white British people. However, limited research has specifically explored their experiences and they are often under-represented in research, for reasons such as cultural and language barriers, or lack of trust. 

In this project, we will find out how best we can work with South Asian people with lived experience of stroke (including those with difficulty thinking and communicating) and what to avoid.

We will engage and work with a group of ten South Asian people with lived experience of stroke (supported by their carers). Between meetings, we will train and support members to test out different approaches, such as interviewing others within their community. This will inform a further, larger study, aiming to find out the most important research questions for South Asian people in the UK with lived experience of stroke.

Alex De Little and Ben Walmsley

My Leeds, a key participatory strand of the Leeds 2023 Year of Culture, has produced a network of 33 Neighbourhood Hosts with strong connections between one-another and in their communities, many of whom are keen to continue their cultural work in a local context.

This project offers the opportunity to research the efficacy of co-production and asset-based community development as methods to embed and make sustainable the work that has emerged from this programme. It invites a group Neighbourhood Hosts who are keen to continue to engage in a co-productive process to:

• become co-researchers; reimagine their roles beyond the Leeds 2023 context
• reflect on their own learning as Neighbourhood Hosts and how it fits in to the ecology of Leeds community and cultural development frameworks in the city
• produce a manifesto for future action
• begin an asset-based project in their communities.

The co-research in this project produces the outputs of the manifesto and a range of new asset-based community projects as well as the impacts of embedding this work in local contexts and increasing its capacity and sustainability.

The learning legacies from this project will, in particular, support Leeds City Council’s Cultural Policy Team in formulating the city’s future community cultural leadership programme and development of the Cultural Strategy, particularly around questions of cultural democracy and the value of co-production for cultural activity.

Dr Simon Pini and Dr Vicky Hopwood (Department of Psychological and Social Medicine, Faculty of Medicine and Health)

“INSCHOOL” is a 5-year NIHR funded research programme investigating and documenting the school lives of children and young people living with long-term physical health conditions. INSCHOOL is a participatory research project. Involvement and collaboration with children and young people and practitioners is central to determining how INSCHOOL is delivered and what it does.

The INSCHOOL research programme has already identified the needs that children and young people with long-term physical health conditions commonly face in school. It has also shown that attending school can be more challenging for these children and young people and how absence is managed can have positive or negative consequences. We now need to make sure that the research findings reach school staff and health practitioners.

The Participatory Research Fund award will be used to:

• co-create resources (posters and leaflets) for schools. These resources will be developed with CYP with LTPHCs for CYP with LTPHCs
• explore impact of the INSCHOOL project. We will start to develop an approach to investigate what impact INSCHOOL has on CYP, researchers, schools and healthcare services now and in the future. This is an important step in determining how INSCHOOL can make a difference to the school lives of CYP with LTPHCs and those who support them
• co-identify future research priorities.

Maria Kapsali and Sarah Astill

Physical movement is a key aspect of living well and maintaining independence as we grow old. Yet, older adults might find it hard to engage in movement activities, because of pain, health conditions or lack of opportunities.

One of the key ways in which Age UK Leeds support adults over the age of 50 is by offering opportunities for physical and creative activity.A Brand New Sense aims to contribute to the organisation's commitment to providing ways for wellbeing.

The project provides echome, a wearable technology for sound and movement interaction, as an innovative digital tool that the charity, its staff, volunteers and service users, can use to encourage movement and creative expression.

The aim of the project is to work with Age UK Leeds and co-design a training package that would allow Age UK staff and volunteers to:

1. use echome in group settings and home visits
2. develop a set of bespoke resources that will enable service users to use echome at home and through online activities
3. equip Age UK with the echome equipment
4. evaluate and identify the outcomes of the intervention.

Morgan Campbell

As a partnership between the University, Leeds City Council and delivery cyclists, this purpose has two purposes.

First, to give voice to the everyday experiences of riders who move between road space, pedestrian space, and dedicated cycle lanes to pick up and deliver food within a set period. There are socio-spatial politics to this work; the service riders provide is in high demand, but their presence is unwanted. Riders don’t feel comfortable cycling on roads where motorists engage in threatening language and aggressive behaviour while moving onto the pavement puts pedestrians in real and perceived danger. Most riders come from ethnic minority backgrounds which increases a public narrative of othering and unwantedness.

Second, to establish and sustain a forum connecting the marginalised voices of riders to transport decision makers. The aim is to reframe their experiences as forms of expert knowledge regarding road and pavement politics within the city, cycling safety and theft. While the Council has formal channels for public input, it is not clear how to engage and sustain interest from riders who are time-poor and possibly distrustful of local government. By inviting people to voice and reflect upon their everyday experiences and practices, the forum attempts to redistribute where the power of knowledge sits and supports participatory research’s goal to change social reality.

Faisal Mushtaq

The Born in Bradford (BiB) Age of Wonder project is tracking the lives of thousands of young people across the city of Bradford as they go through adolescence. Building on this platform, we are developing a new programme of work focussed on collecting brain data from BiB participants during this critical phase of development- “BiB Brain”.

Our intention is to pseudonymously link these brain data with ongoing BiB data collection (including measures on cognitive and mental health) as well as routine electronic health and education records. This will provide a comprehensive picture of adolescent brain development.

Given the complexity and sensitivity of the data we will collect, along with the highly technical nature of the process of brain recording, we will work with teenagers and their parents and teachers to refine our processes and materials. Through a series of workshops, interviews and surveys we will co-produce inclusive and accessible information and consent documents so that we can communicate the purpose of the study and the data linkage process in an inclusive and accessible way.

We will document our methodology and present a blueprint for the neuroscience community to encourage the undertaking of inclusive and accessible brain research.

Alexander Beresford and Ruth Bookbinder

South Africa is the 14th largest emitter of greenhouse gases due to its dependence on coal-generated electricity. There is significant international political and financial commitment to promoting a just transition from coal-fired energy to renewables in South Africa and the JETP agreements struck at COP 26 and 27 reflect some of the most ambitious plans to emerge from the COP summits to date.

However, a transition from coal would create the most significant socioeconomic upheaval in recent South African history and the voice of those communities most impacted must be heard in order to ensure the transition is truly just.

With our partners in the Sam Tambani Research Institute (SATRI) connected to the National Union of Mineworkers (NUM), we explore how working class communities are responding to these challenges.

We are conducting interviews with elected officials at all levels of the union as well as workshops and focus groups with union members to explore their expectations and demands for a ‘just’ transition. The findings will directly inform NUM’s engagement with its membership and its work with the Presidential Climate Commission, shaping national policy in this most critical sector.