Gypsy and Traveller-led Research Partnerships: Reaching Out

Our Story

The Reaching Out Initiative was born from a vision to bridge gaps and foster meaningful relationships between Gypsy and Traveller Communities (GTC) in Yorkshire and Humber and researchers from the National Institute for Health and Care Research (NIHR). This project aimed to encourage the development of new public involvement relationships and more inclusive approaches to community engagement, based on community development principles.

Background: Breaking Barriers

GTC face persistent barriers to accessing health and social care, and are underserved by typical approaches to research and public involvement. Community members also experience research and consultation fatigue, feeling like they are researched ‘on’ rather than ‘with’, and rarely feeling the benefits of research. The prevailing sentiment of 'nothing ever changes' became a rallying cry for the Reaching Out Project.

The initial one-year pilot (July 2018 to June 2019) was jointly funded by the National Institute for Health Research (NIHR) INVOLVE and the Research Design Service (RDS). It marked the beginning of a concerted effort to enact positive change over a period of five years. That work has incorporated a series of engagement activities and small-scale projects, outlined below. 

How did we work together? 

Building relationships and trust emerged as a cornerstone of the project. We formed a core collaborative group, which included university-based researchers and GTC members from York Travellers Trust (YTT). Regular, informal meetings facilitated understanding and shaped the project. Trust is a valuable outcome that takes time to build, and those early discussions were a vital part of that process. However, we learned that there was a delicate balance between general discussions (e.g. getting to know each other) and having tangible tasks to work on together. 

Going Wider: Expanding Horizons

The core group came up with potential directions for the project, which we took out to the wider community for further discussion and engagement. For example, on Facebook and by attending the Lee Gap Horse Fair. We focused discussions around the question 'what stories go untold', inviting people to consider what they would like to share outside of GTC. This largely focused on positive stories, such as how communities rally together to care for their elderly or sick.

Community Workshop in Wakefield: Nurturing Conversations

A pivotal Community Workshop in Wakefield brought together around 40 GTC members for an informal afternoon discussing health and social care. Financial incentives and activities for young children aimed to create an inclusive atmosphere. We talked about community priorities, such as challenging stereotypes, collecting positive stories, addressing mental health, improving maternity/children's services, and engaging with home-schooled kids. The day revealed valuable learning points such as embracing chaos and informality at community events; the importance of valuing people’s time through incentives; and the crucial role of a trusted community partner. 

Navigating the Pause: Adapting to COVID-19

COVID-19 prompted a pause, a strategic decision to allow YTT to focus on frontline support for GTC, during an extremely difficult time. In addition, learning from earlier parts of the project indicated that face to face engagement worked much better, therefore online discussions allowed us to keep in touch but it did not feel appropriate to discussion the project online. The team regrouped as lockdown rules relaxed to reassess priorities. Mental health had already emerged as a community priority and YTT staff felt this was now even more important due to the impact of lockdown. Therefore, that became our primary focus. Our COVID pause led to valuable learning around flexibility—recognising that community and organisational priorities evolve and change over time.

Planting Day: Cultivating Resilience

YTT staff delivered a community planting day on a GTC site. Gardening activities acted as a focal point, facilitating informal conversations about COVID-19 impact, especially on mental health. There are key learning points here about building positive impact across an entire project (e.g. improving people’s environment through gardening) and the importance of practical, hands-on activities.

Participatory Research Project: Conversations That Matter

The Men's Mental Health Participatory Research Project aimed to address a key community priority from the Wakefield workshop.  We planned a series of conversations led by a male YTT Community Officer, who is a member of the GTC community. We planned a pool tournament at YTT, and hoped to co-design informal interviews with GTC men, to be held over a game of pool.  However, the Community Officer left the Trust and remaining YTT felt strongly that the planned project could only be led by a man. Therefore, we were forced to re-evaluate our plans and accept the learning that who leads the work matters, flexibility is paramount, and learning from challenges is as crucial as celebrating successes.

YTT Service Evaluation: Reciprocal Relationships

Our final project focused on the mental health and wellbeing services provided by YTT. University-based researchers supported YTT staff to evaluate those services from both the perspective of staff and users. 

The YTT Service Evaluation highlighted the importance of reciprocal relationships i.e. research organisations supporting community organisations, rather than simply expecting the third sector to support health research. We were able to provide both financial and practical support, acting as critical friends, underlining the collaborative nature of the initiative.

Moving Forward: A Shared Learning Journey

Our journey together is documented in this infographic, encapsulating the essence of the Reaching Out Initiative—a testament to the power of collaboration, adaptability, and building connections in the pursuit of positive change.

The approaches used during this work are not new. They build on a rich history of community development and participatory research. However, those approaches are not commonly seen within the context of NIHR funded research. That is beginning to change, with more researchers recognising the need for inclusive engagement practice and embracing community partnerships. Whist this is a positive step, there is a danger that it could exasperate the consultation fatigue which some communities already experience or lead to overburdening of community organisations. In addition, research infrastructure is not built with participatory research in mind, and more work is needed to overcome operational challenges which can impede meaningful partnerships. 

If you would like to work with YTT, there is now a process and contact form for researchers https://www.ytt.org.uk/contact. 

Authors and Partners

Five organisations came together in this project: York Travellers Trust (YTT), Leeds Institute for Clinical Trials Research (LICTR), NIHR Applied Research Collaboration Yorkshire and Humber (ARC YH), NIHR Research Design Service Yorkshire and Humber (RDS YH) and NIHR Clinical Research Network Yorkshire and Humber (CRN YH)