Research With Marginalized Communities: Reflections on Engaging Roma Women in Northern England

Abstract

This article critically explores research with marginalized communities. We provide an insight into our work with the Roma community, reflecting on innovation, opportunities, and barriers, alongside the need for more work in this area. A particular focus here surrounds novel methodologies for exploring the health and well-being of such groups and ways of co-producing research. This article also raises awareness around arts-based social prescribing with marginalized communities and the need to upscale work in this regard. Through doing so, we hope to influence practice, raise awareness around work with the Roma community and enable more creativity within the broader field.

Introduction

This article reflects on the use of research methods within the context of marginalized communities and the power of arts-based projects with regard to impacting on health and well-being. In this piece, we adopt a case study approach with Roma women to illustrate the use of inclusive tools to capturing material on the health impacts on such populations. We begin with a wider reflection on work with marginalized communities and previous work on exploring health and well-being within this context through qualitative approaches. We then proceeding to focus on our funded work with the Roma women’s group, the methodological approach, findings and recommendations; using this as a catalyst for wider debates around inclusive qualitative methodologies. Of particular note, we highlight opportunities for researchers to engage communities with creative activities, alongside the challenges of working with marginalized communities. In doing so, we hope to provide evidence to show the need to engage with similar groups, the opportunities and challenges involved, along with methods which could be replicated on a wider scale.

The aim of the “Roma Connections” project was to enable more explicit connections between this historically margined population and the wider community; from involving the group more in planning processes, to community activities and aiding them to seize upon recent investment in the area. Through this article, we reflect on work with the Roma women and our methodological framework, which focussed on a co-produced approach with the group as key agents in the data collection process. The funding, derived from the Ideas Fund, British Science Association and Wellcome Trust, focussed on the health and well-being of the group, alongside their sense of connectiveness. With this in mind, we shaped the approach to capture not only the experience of members, but the health impacts from the activities they took part in. At the center of this approach was a collaboration with a theater, Oldham Coliseum, who involved the Roma women in an array of arts-based activities alongside a wider program of events constructed by group. The idea of using the arts to impact on health and well-being is not new, with a nascent research base showing the impact of theaters, museums, and other cultural assets on communities (see, for example, Howarth et al., 2020).

With immense growth around creative ways to tackle health inequalities, we hope that this piece highlights opportunities for innovation among researchers and may enable more work on themes, such as the role of arts-based social prescribing with marginalized communities. We also hope that this article raises opportunities for the arts and creative sectors to further their impact even more, particularly at a time when such assets are under strict financial and other pressures. Furthermore, this article reveals opportunities for creating more inclusive environments and using research tools to provide an active voice to marginalized communities. A key element of this article itself is the authorship, which involves academics, the creative sector partner and the Roma community; ensuring that not merely the researchers’ voices are heard, but rather broader reflections from the wider consortium.

Reflecting on Work With Marginalized Communities

A marginalized community occurs when there is unequal power within a society, causing a group of people to be excluded from conventional social, economic, education or cultural life (Baah et al., 2019). Factors as to why an individual or community might be excluded include, but are not limited to, race, age, gender association, sexual orientation, language, physical ability, and the immigrant status of a group of people (Sevelius et al., 2020). When conducting research with marginalized communities, multidisciplinary approaches are often adopted to combine academic knowledge and expertise with those from different disciplines (Kiddey, 2017). However, proposing traditional methods of research in partnership with marginalized communities can be challenging, as the process can re-aggravate or reinforce experiences of social power imbalances and stigma (Parson, 2019). For example, previous research with the Roma community has been shown to increase community exclusion, as findings legitimized stereotypes instead of using it a tool to overcome anecdotal views (Munté et al., 2011).

An effective methodology should enable participants to contribute and develop knowledge regardless of their culture, ethnicity, or education, linking to the principle of cultural intelligence (Campbell, 2020; Racionero & Valls, 2007). Participant observation is a popular method for conducting research with marginalized communities, as it treats people as knowledgeable mediums in which researchers can learn from (Cloke et al., 2004; St Clair et al., 2020). Methods of participant observation are commonly adopted for poststructural research approaches as a process of evaluation (O’Neil & Morgan, 2001), and to signify social patterns and common behaviors across different cultures (Meacham & Buendia, 1999). A hindrance of participant observation is that it is reliant on the researcher adapting to the identity of the community and building trusting relationships (Laurier, 2003). In some cases, this might not be feasible, particularly if the research team does not share the same background as the participants or if other barriers are apparent.

More recent work has focussed on the impact of COVID on marginalized communities, with such sectors of society argued to be affected more by the pandemic (Kantamneni, 2020). Due to the impact of the pandemic, there has been an upscaled focus on working with such communities; this is particularly the case with regard to tools and approaches which can help such elements of society recover from the pandemic and evaluate their health and well-being. We now proceed to reflect on health work with marginalized groups, before reflections on our work with Roma women and opportunities for retrofitting methods to collect such vital data.

Health Research in the Context of Marginalized Communities

The negative societal stigma marginalized communities experience influences their attitudes toward receiving public health care services, resulting in many becoming reluctant to access or prolong receiving health care treatment (Wilson et al., 2018). According to Cook et al. (2013), it is less common for Roma populations (a classified marginalized community) to have access to advised services, such as dental and cervical screening. Furthermore, a survey comparing 4,572 non-Roma with 8,735 Roma across 12 European countries identified that unmet health needs are upto 3 times more likely to be reported from Roma communities (Arora et al., 2016). The lack of engagement and differing worldviews of marginalized communities is thought to amplify their poor health outcomes. Studies have identified that marginalized communities are often in significantly poorer health compared to those of the wider population, such as lower life expectancy (Cook, et al., 2013). As a result, marginalized communities have the highest risk of poor health outcomes and receive health care services much later than made available, decreasing their treatment options, and heightening their mortality rates. Despite this evidence-base, further research is recommended for identifying appropriate interventions to reduce such health inequalities and barriers (Wilson et al., 2018).

Literature on marginalized communities, and the framework of social determinants of health, has identified that societal power dynamics influences inequity in health care delivery. Researching into how marginalization and social determinants of health are connected is suggested to enhance the understanding on how inequity of health care delivery correlates to the health-related disparities found in marginalized communities (Baah et al., 2019). In addition, further research is needed on how the health care environment can be culturally responsive, respecting the values and beliefs of others, to reduce the health care inequity experienced by marginalized communities (Wilson et al., 2018). Post-COVID, there is a wealth of literature emerging around tools and approaches to tackling these health inequalities affecting marginalized communities: from creating a more accessible health care system at a meta level (Coronini-Cronberg et al., 2020), to upscaling radical approaches, such as social prescription, at a more microlevel (Howarth et al., 2020).

With the latter concepts, we are now witnessing increased investment in spaces such as community gardens and other green schemes, as part of the solution to addressing the ever-increasing mental health impacts of the pandemic (Bell et al., 2018). Linked to this, arts and cultural venues are also being called upon as part of the social prescription movement. Yet, despite this, there is a lack of an explicit focus on their role within marginalized communities. We now proceed to reflect on our initial experiences of a cultural venue’s work with Roma women, using an array of approaches to enable the community to feel more connected and valued. We reflect on this wider approach and our methodological framework for engaging this hard-to-reach sector of society. Through this reflection, we hope to showcase opportunities with innovative approaches with diverse communities, appropriate research methods and initial insights into the impact of novel partnerships in the context of health and well-being.

Roma Connections: Reflecting on Work in the United Kingdom

From 2021 to 2023, Oldham Coliseum Theater and the University of Salford joined in partnership with KaskoSan to form the Roma Connections group, a multidisciplinary community project funded by the Ideas Fund, with an explicit focus on women in this marginalized community. The Learning and Education department of Oldham Coliseum Theater host partnership community projects to promote action research and collaboration within the local community. KaskoSan (2014) is a nonprofit charity organization coordinated by the East European Roma community in the North of England who provide support and engagement with the non-Roma world (“gadjo”) to decrease social segregation and improve quality of Roma life. This piece reflects on the work during the project, with the aim of critically exploring engagement with the women’s group. In doing so, we hope that this article can impact on ongoing work in the sector, particularly in the post-COVID environment.

Reflecting on Roma Connections: An Overview of Methods

Although we proceed to review the research tools used during the Roma Connections project in more depth, we first reflect on the data used within this article and the formation of the case study itself. In the context of the latter, the Roma Connections project was originally established to focus on younger actors in the community, through engaging local schools and youth centers. However, following discussions with KaskoSan, the Roma charity, an opportunity arose for a more targeted approach with women in the community, alongside a wider initiative with younger people. In this sense, it became apparent that Roma women were particularly excluded and there was a call to explore more creative ways for engaging with this part of the community, particularly with regard to addressing issues around health and well-being. Within this article, we explicitly focus on the program with the Roma women’s group program and hope to influence wider practice in this area.

This article draws on interview and wider qualitative data with key actors involved in Roma Connections, ranging from a Roma Research Champion (RC) to Coliseum Theater staff. We also reflect on wider material which captured the well-being of project participants, which ranged from interviews, with well-being tools embedded within them, alongside other techniques explored later in this article. In all cases, KaskoSan acted as the primary gatekeeper to enable data collection, while the funding influenced much of the participant selection. With participant selection in-mind, the grant focussed on Oldham, one of the most deprived areas in the country, and aimed to enhance innovation around engaging marginalized communities within this context. Of particular note, the funder wished to see projects which went beyond merely evaluation, with researchers often viewed as outsiders within this type of work. Rather, in this case, the funding agencies urged for more collaborative approaches which influenced practice, created new connections and collected material on the impacts of the work. As we have already highlighted, through desktop analysis and initial discussions, it became apparent that the Roma women were identified as key participants for this study.

Alongside the funder’s priorities, the Roma community in Oldham also felt that there was an urgent need for the project, with the RC explaining that

Roma face several centuries of antigypsyism (an extreme form of discrimination similar to “antisemitism”) when engaging with the outsider world and therefore have no trust in outsider individuals and institutions. Roma developed a culture where they do not communicate their mistrust to the outsider world and remain in isolation. Roma women never visit any space in the outsider world on their own, they always must rely on either their husbands or their children for support with communication. (Female RC for Roma Connections, 2022)

The purpose of Roma Connections was to combine the resources of Oldham Coliseum and KaskoSan, alongside the University of Salford, to explore how weekly sessions of interactive activities can enhance the well-being of women in the Oldham Roma community, build skills and reducing social segregation. The Learning and Engagement department of Oldham Coliseum Theater identified that

The women [within the Roma community] are often the least engaged members of the Roma community, and therefore we wanted to create a space which they could take ownership of and have agency within. We are building capacity within the community and upskilling those we have been working with to further pass on information, skills, resources, and services that we have been able to sign-post community members to. (Head of Learning and Engagement of Oldham Coliseum Theatre, 2022).

A key outcome of Roma Connections was to ensure the well-being impact and engagement with the “gadjo” world is sustainable. The role of University of Salford within the partnership was to capture the well-being impact and engagement and demonstrate how beneficial the project was for the funders. The partnership between KaskoSan and Oldham Coliseum Theater has enabled the non-Roma world: “to form and develop a stronger relationship with the Roma community, exploring how the arts can positively inform the lived experience of those we are able to connect with” (Head of Learning and Engagement of Oldham Coliseum Theater, 2022).

Regular Engagement: The Weekly Sessions

The weekly sessions of interactive activities involved a mix of external visits and internal sessions based at local community centers or the theater involved in the project. Internal sessions involved mindful goal setting, illustration, cooking, and storytelling. While external sessions included visits to key local sites, such as the Library, Art Gallery, and major projects, such as Northern Roots, soon to be the largest urban farm and eco-park in the country. Providing external activities signposted the women’s group of Roma Connections to the services and facilities available in the area. Many of the Roma women had not visited Oldham’s tourist attractions or public services available, despite living in the area for more than 5 years. The project was viewed by the group as an opportunity to engage with the services and facilities available in the town and further afield; this was seen as a tool for breaking down the perceived barriers and segregation the Roma community has of the ‘outside’ world, created from previous experiences of social stigma and discrimination:

There is stigma and mistrust on both sides, and by working together, holding celebratory events and sharing stories from each culture, we are making a positive step towards further integration across communities. (Head of Learning and Engagement of Oldham Coliseum Theatre, 2022)

All session attendees and project partners learned a lot about each other from one another. It has been a great pleasure taking part in this journey. (Female RC for Roma Connections, 2022)

In contrast, the purpose of the mindful sessions was to provide different techniques the Roma females can adopt for improving well-being within their community setting. The mindful sessions were also an opportunity to reflect on how the Roma females wanted to improve their well-being as well as being exposed to learning new skills and unveiling hidden interests. This informal approach to the program allowed for the group to connect and co-produce the activities through discussing potential visits and ways to connect with the wider community.

Challenges to Working With the Roma Group

Despite the positive outcomes, there were initial cultural challenges for hosting the Roma Connections sessions. An initial issue arose with considerations around the gender balance of the research team, due to sensitivities around external males working closely with Roma women from within the community. Fortunately, our research team was established with a balance that enabled the project to proceed, albeit with a more informal approach, based around the weekly aforementioned sessions as opposed to blocks of formal training and monitoring. As previously highlighted, the team’s mix of a “traditional” researcher, alongside paid champions and theater staff, led to a multifaceted team which could support the Roma women in several ways; building the latter actors into the project budget was essential here and enabled the data collection, alongside the activities, to take place. This is important for any teams working with such organizations, with research budgets often able to accommodate these wider organizations within them.

Other challenges surrounded the location of meetings and events. As the project was in partnership with the Oldham Coliseum Theater, the Roma’s preserved presumption of theaters created initial challenges in building relationships. The Roma community’s understanding and perception of the theater environment and ethos is based on Victorian behaviors of the spaces, believing it to be a place that promotes heavy alcoholic consumption and hosts brothels or prostitutes. Roma cultural understanding of theaters were deemed as unsuitable places for women to go, meaning the sessions had to be held in a neutral space, such as the local community center. However, once the Roma community had built trust with the Oldham Coliseum Theater, their embedded perceptions of the theater environment changed and were happy for the sessions to be hosted at the theater:

I feel very happy that we managed to come across all challenges through the close partnership we had with the research team and through their flexible approach with a high cultural sensitivity. (Female RC for Roma Connections, 2022)

Roma families started having trust in the outsider world which has not happened before. Roma ladies developed a strong sense of ownership over The Roma Connections project which also created a sense of belonging for the Roma families reached. (Founder of KaskoSan, 2022)

Accepting Roma Connections to be held at the theater presented a positive impact of how the project is changing social perceptions from both the Roma and non-Roma world. This enabled new connections and for the Roma women to showcase their cultural at a range of events aimed at the public. Future projects, aiming to work with the Roma community, should keep such challenges in-mind and could explore opportunities to bring such groups into similar settings through a structured, slow approach. In doing so, this enabled the Roma women in this context to progress more widely across the activities offered and be open for more opportunities not initially considered in the project.

The Role of an RC to Combat Challenges

A key challenge in delivering the sessions, and measuring the impact of the project, was that the participants of Roma Connections were illiterate and spoke little to no English. In response to this, the project team employed an RC and allocated a member from the Roma community to aid translation with delivering the sessions and collecting data:

Having a key worker from KaskoSan who, is part of the Roma community, and understands Roma culture has been invaluable in terms of gaining a deeper understanding of the community needs, and ensuring our work is carried out with the upmost authenticity. (Head of Learning and Engagement of Oldham Coliseum Theatre, 2022)

The use of these roles is an example of community-based participation. Community-based participation research is recognized as an integral role for Roma research as it reduces barriers in trust, networking, cultural competence, and language (Munté et al., 2011). The community-based participation enables Roma researchers to gain recognition within the community and develop that can be used in research and social settings, contributing to their personal development (Von Unger, 2012). The use of RCs within community-based participation can guide research and reach out to a wider market of Roma participants (Kennedy et al., 2019). The University of Salford supported the RC by delivering training on how to collect data to measure the well-being impact of Roma Connections to enhance skills, promote personal development, and “change in trust and perceptions towards the non-Roma world” (Female RC for Roma Connections, 2022).

The use of an RC also changed embedded perceptions the women of Roma had on the non-Roma world and, in particular, education. Prior to the Roma Connections project, the women in her community would ask: “Why are you going to college?” (RC for Roma Connections, 2022). This is because the Roma women perceived to have “no understanding of the value of formal education at all.” However recently that question changed to “Can we also learn English in school? They started referring to weekly sessions as ‘school’ activities in their family correspondence.” (Female RC for Roma Connections, 2022). The reported evidence demonstrates how using an RC as a community-based participation is a tool can combat challenges in terms of trust, networking, cultural competence, and language, as well as change embedded cultural perceptions to create positive change.

Despite the benefits of the RC role, the women of Oldham’s Roma community were becoming reliant on their partnership with KaskoSan. The next challenge for the Roma community to combat was how to encourage engagement with the non-Roma world independently, to continue to transform embedded cultural perceptions and improve their well-being in terms of social segregation. A key priority of the Roma Connections project was to ensure the positive change created continues and is sustained. Embedded in the planning and delivery of Roma Connections was to “continually trying to pass on connections and introduce the women’s group to resources and services they can access, so there is a sense that the work doesn’t stop at the end of the project.” (Head of Learning and Engagement of Oldham Coliseum Theater, 2022).

The Well-Being Impact of Roma Connections

As per the goals of the program, we aimed to explore the health and well-being impact of the intervention. Post-COVID, social prescribing is gaining in popularity, yet much of the literature base focuses on green interventions, as opposed to arts or cultural-based schemes (Howarth et al., 2020). We now begin to proceed to outline our research framework and the tools used to gather information on cultural assets and marginalized communities for impacting on health and well-being. In this section, we build on the Roma Connections work by reflection on how we may upscale work with cultural actors, particularly with marginalized groups. Reflection enables participants to observe and manage learning experiences to formulate action plans for future effective learning (Harrison et al., 2003). The reflective learning process helps new knowledge from a learning or unsettling experience (Moon, 2005). (a) Goal setting, (b) visual diaries, and (c) interviews were three methods used to measure and reflect upon the well-being impact of Roma Connections. Through this section, we hope to highlight the opportunities and challenges with this approach, with the potential for replication in other studies.

Goal Setting

Vision boards are often used as a creative tool to help a person reflect on what they want to attain in life and conceptualizes future goals in a strength-based and solution-focused way (Waalkes et al., 2019). The first session of Roma Connections involved the group to create decorated a folder in the style of a “vision board, which were then used to store any leaflets, drawings, or physical outcomes of each session to create a memory file of the activities of Roma Connections.” The University of Salford Research Assistant and RC asked each female of Roma Connections to identify one goal they wanted to focus on and rank this out of three on “how important the goal is” and “how difficult it will be to achieve” with 0 = not at all important/ difficult and 3 = very important/ difficult. The purpose of the session was also beneficial for the Project Lead, as future sessions could then be designed around helping the females achieve their aspirational goals. The quantitative format aided language translation within the data collection process. It also meant the method of data collection can be easily repeated adopted by alternative researchers to measure longitudinal progress in achieving the aspirational goals, thus creating a sustainable method of data collection.

Visual Diaries

Research has identified diary entries to be an effective tool for collecting subjective data over a long period of time, especially when investigating how daily lives and routines impact health related issues (Milligan et al., 2005). The use of diaries or journals are a popular technique for reflection within sectors of education, and health (Platzer et al., 1997). Reflective field diaries can enhance written communication and critical self-reflection skills as the process encourages the participant to move beyond recording facts and knowledge toward a personal reflection on how the experience has impacted them (Dummer et al., 2008). However, producing written diaries can be considered as difficult for some participants (Pilcher et al., 2015). Using photography recording information in the form of a visual diary is considered to be a fun and effective way to engage participants in recording reflective data (Glaw et al., 2017). Once the visual diary is complete, the research holds a photo-elicitation interview with the participant (Pilcher et al., 2015).

As the females of Roma Connections were mostly illiterate, the concept of a reflective field diary was adapted into a visual diary. The method of a visual diary was inspired by initial behavior observations of the Roma females as they took pride in taking photos at every opportunity and sharing these via WhatsApp:

Whilst working with the women who were part of the women’s group, we quickly observed how much they enjoyed taking photos. They would always be capturing moments and activities on the cameras on their phones. Therefore, we wanted to build on this, and incorporate it into a way we were capturing evidence. (Head of Learning and Engagement of Oldham Coliseum Theatre, 2022)

To signify the visual method, each female at Roma Connections were given a disposable camera in which to take photos of an element of each session that was meaningful to them. For example, for the visit to a local Art Gallery, one Roma female took a photo of a traditional thread picker on display and explained that manufacturing traditional thread pickers was a common profession in the Roma community, and shared stories of her father and grandfather. The Project Lead shared family heritage in the U.K.’s cotton industry, and the group bonded over the similarities in traditional cultures. Halfway through the project program, a reflective session was implemented with the RC interviewing the females of Roma Connections on how the sessions have impacted their well-being using the photos taken as a prompt. This method is known as “photovoice” (Harper, 2012, p. 155).

Interviews

The technique of “photovoice” tradition is when a participant is encouraged to explain and reflect on the context of the photo, within an interview setting (Harper, 2012, p. 155). The technique of “photovoice” was adopted in the form of a semi-structured interview to capture the well-being impact Roma Connections. Females of Roma Connections used their “vision board folder” as a prompt on what they enjoyed the most and least about the activities. The RC was then able to translate and record the qualitative answers in English, which in turn, enhanced her literate, communication, and leadership skills. Quantitative scale-based interview questions were answered to rank the well-being impact of the Roma Connections sessions. The quantitative questions were based on the Psychology Adaptation Scale to include data on: coping efficacy; self-esteem; social integration; and spiritual well-being (Biesecker et al., 2013).

However, literature has highlighted that participant’s emotions can be inflicted from discussing the visual diaries, it can be difficult for the research to anticipate if the photo discussion will trigger a sensitive topic within the photo-elicitation interviews (Pilcher et al., 2015). Questioning how appropriate this method of research is if a researcher is not equipped with the right skill set or signpost resources suited to arrival and sensitive topics. The team working on the Roma Connections project ensured the cultural sensitivity and the well-being of the Roma women were a key priority and focus point throughout project planning and delivery.

We wanted to create a safe space for the women and continue to be a space where the women can raise sensitive topics if they feel like they want to or need to. (Head of Learning and Engagement of Oldham Coliseum Theatre, 2022)

Upon reflection, the importance for creating a “safe space” was heighten due to the impacts of the COVID-19 pandemic:

With the pandemic, there have been a high number of death cases in the Roma community and the Roma Connections project has naturally become a space where Roma women openly discuss about it with project partners. (RC for Roma Connections, 2022)

The Roma Connections sessions provided a space for which the women of the Roma community could discuss their personal impacts from COVID-19 and receive support from project participants.

A Final Reflection on Roma Connections

To summarize, hosting weekly sessions for the women of Roma community has not only created a safe space to be exposed to the non-Roma world, but also enforced the support they can provide for each other. The women of Roma Connections have created a strong community within itself, who are open to building relationships outside their associated Romani cultural heritage. The weekly sessions have increased personal development, changing their embedded perceptions on education in which created motivation to seek opportunities with non-Roma world:

A rather visible and huge impact is that some of the young Roma women approached KaskoSan for opportunities in academic studies which they have never ever considered before. That was a direct result of our [Roma Connections] work. (RC for Roma Connections, 2022)

As a result, Roma Connections has demonstrated positive social change within the Roma community that has the potential to represent positive social poststructuralism within the local community. We hope that this case study acts as a tool for generating discussion and further work to engage such communities; using a range of tools to be conscious of similar barriers and potential solutions. Whether future work is with the Roma or similar marginalized elements of society, we feel that this informal approach model, combined with a range of techniques, provides a basis for engaging similar communities moving forwards. Furthermore, we have shown the importance of building research budgets to be highly collaborative, benefiting all organizations involved and enhancing the impact of the work.

Adding to this, the study showed the power of arts-based projects in tackling health inequalities and the value of theaters within this space. The data collected showed that the women felt more confident, connected, and able to have a voice in their wider community. Of particular note, the theater acted as a space for the group to showcase their culture, values, and aspirations; using the form of productions to communicate these to a broad array of actors who attended the Roma celebration shows. In doing so, this raised awareness among key decision-makers around ways of further including the group in broader activities in the area. This links to wider literature on social prescribing and the power of arts-based or green projects’ impacts on marginalized populations (see for example, Howarth et al., 2020).

Unfortunately, at the time of writing, Oldham Coliseum ceased operations on the 31 March 2023 after over 100 years in the community (Oldham Coliseum, 2023). As this case study has demonstrated, the theater was not merely a place for traditional productions, but a vital hub for the people of Oldham and the wider region; from working with local schools, to mainstreaming arts-based social prescribing activities. In this case, the Roma Connections reflections show the power of these spaces in enabling transformation and the need to understand the wider value of these cultural assets. While the funding for Roma Connections has come to an end, KaskoSan and the University of Salford are working to ensure a legacy for the work and continue progress beyond the initial grant.

Innovative Methodologies and Marginalized Communities: Reflecting on Wider Practice

Moving forwards from our Roma Connections reflections, we now proceed to highlight tools for working with marginalized communities, with a particular focus on health and well-being. The World Health Organization (WHO) define well-being as more than the absence of illness, and reframe it as a complete state of physical, mental, and social well-being (Fleuret & Prugneau, 2015). To define an individual’s or community’s state of well-being therefore requires subjective and objective tools in order to assess the multifaced physical, mental, and social elements (Foregeard et al., 2011). Furthermore, the perception of social well-being can be expanded to a person’s or group of peoples’ state of health and place within society, identifying well-being to be framed as a positive aspiration within quality of life (Martino, 2017). However, this view has been criticized as unrealistic as very few people have full physical, mental, and social well-being all at once, suggesting people are unhealthy for most of the time (Godlee, 2011; Martino, 2017). Foregeard et al.’s (2011) study conceptualized Wellbeing Theory into a five-element paradigm to from Positive emotion, Engagement, Relationships, Meaning, and Accomplishment (PERMA). The elements of PERMA interlink and influence each other, such as a person may feel positive emotion from accomplishing something, which in turn can motivate someone to engage further into an activity and result in building relationships. It is suggested that one element of the PERMA paradigm should be nurtured to have a positive influence on the others (Segliman, 2011).

The literature defining well-being to include health and place within society in combination with Foregeard et al.’s (2011) suggestion of nurturing on one element of PERMA to improve all five elements, corresponds to the purpose of Roma Connections. The purpose of Roma Connections was for the women’s group to build relationships with the “gadjo” world and improve their overall well-being in terms of place within society. Based on the reflection of the U.K. case study: Roma Connections, the paper poses how the use of (a) visual methods and (b) community-based participation can used as innovative methodologies to gain an intuitive understanding of well-being in terms of place within society:

The Value of Visual Methods

There has been a growing interest in the use of visual methods to capture and interpret qualitative research within anthropology and sociology (Glaw et al., 2017). Examples of visual methods include photography, film, video, painting, sculpture, and various forms of artwork (Barbour, 2014). The use of visual methods has become increasingly adopted by the discipline of health research (Balmer et al., 2015), and perceived to add multidimension value to data on everyday living (Barbour, 2014; Mah, 2015). The use of visual methods is recommended to enhance the measurement of well-being and encourage policymakers to look beyond statistical data (Foregeard et al., 2011). The use of visual methods is also suggested to aid the relationship between the researcher and participant, and thus enriching data collected. Data are enriched as visual methods can facilitate and encourage reflection which can capture spoken and unspoken emotion or expression. Furthermore, the approach positions participants as experts of their own lives, which in turn promotes empowerment and personal development (Pain, 2012). Two common visual methodologies that are becoming widely adopted are autophotography and photo elicitation (Glaw et al., 2017).

Autophotography is a method used with ethnographic research that uses photos to capture environments through the eyes of a participant. It was developed in the 19th century and often used to present findings of native cultures in other parts of the world (Thomas, 2009). Since then, autophotography is identified as an important tool for building relationships and conducting data with marginalized groups as it does require verbal participation (Noland, 2006). The experiences gained from conducting research with Roma Connections mimics the literature on relationship building. Both the Project Lead and Research Assistant were unable to verbally communicate to with the females of Roma Connections without language translation. The act of taking photos instigated human interaction with the women of Roma Connections, Project Lead and Research Assistant, and taking a photo of each stage of the sessions became a ritual each week.

Although, photographs are signified to capture depth and detail of an environment, the “trueness” of the photo is debated, especially if participants have actively taken it (Thomas, 2009). Participants of autophotography can dictate how they want others to interpret the photo and draw conclusions from the captured visual scene created (Noland, 2006). The photos taken from Roma Connections would be criticized as being “posed” and not a “candid” approach for capturing the meaningful element of each session. The development of smart photos and social media has instigated a “selfie” culture, meaning “posed” photos are a natural behavior for taking photos (Hardey, 2013). Encouraging participants to take photos of concerns within their community has been identified to instigate social change and action (Glaw et al., 2017). The media has repeated exposed social exploitation toward Roma communities (BBC News, 2018; BBC News, 2022; Guardian, 2010), enforcing why they are reluctant to engage with the “gadjo” world (Munté et al., 2011). The purpose of Roma Connections was to break down the barriers of social discrimination for both Roma as well as the “gadjo” world. The external visits to local services and facilities were an opportunity to change the perception of the “gadjo” world on the Roma community and the use autophotography acting as a tool for the two worlds to bond.

Wang and Burris (1997) developed the method autophotography by asking participants to articulate what the photos mean, giving them a voice on issues and themes that emerge from the photos taken. Generating a verbal discuss around autophotography is known is photo elicitation and has become a widely used technique for interviewing (Bigante, 2010). Researchers are also able to see a visual comparison of data and pair this with textual data from the interview to produce more “truthful” or “real” data. Research highlights that photo-elicitation interviews can produce “empowering” research due to the participant’s emotions inflicted from discussing the visual diaries (Pilcher et al., 2015). The use of imagery within an interview setting evokes another part of the human consciousness in a way written words cannot describe. Visual images use more of the brain’s capacity to process and are therefore more significant when used a probe for recalling information. The use of autophotography and photo elicitation has been a popular technique in the field of psychology (Glaw et al., 2017), and suggested to be beneficial for collecting data from marginalized communities and illiterate participants to gain a greater understanding of their unique experiences (Steger et al., 2013).

However, based on the experiences of Roma Connections, language and literate skills were key challenges for collecting data as the female participants were illiterate and spoke little to no English. The semi-structured questionnaire was used to collect qualitative and quantitative data aided the photo-elicitation interviews. Adapting the photo-elicitation interviews to more of a structured approach simplified the data collection process for the RC, especially as her English language and literature skills were limited. The structured approach, particularly the quantitative aspect, acts as a controlled variable within the photo-elicitation interviews, and enables the data produced to be analyzed with ease by people without an academic background. This is particular important given earlier discussions around exclusion: the persistent racism Roma communities have faced throughout history has resulted in Romani people having little trust in authorities and refusing to be participants of research (Munté et al., 2011). Moving forwards, structured photo-elicitation interviews could be adopted as a tool to build research relationships and enhance data collection from marginalized communities, like the Romas. The suggested approach correlates to how an effective communicative methodology enables participants to contribute and develop knowledge regardless of their culture, ethnicity, or education, linking to the principle of cultural intelligence (Racionero & Valls, 2007).

The Value of Community-Based Participation

Incorporating community-based participation throughout the entire research process promotes active involvement and advocates a critical communicative perspective; factors that add values to research knowledge (Gómez & Marti, 2012). Community-based participation adds value on shared power for achieving health, community, policy, and social justice and equity outcomes (Wallerstein et al., 2019). Wallerstein et al.’s (2019) case study analysis on community-based participation within marginalized communities identified that their involvement in research can promote overcoming social resilience and combat historical injustices and segregation. Using community-based participation within research demonstrates how partnering principles and practices across the levels in hierarchical power can endorse transformational change in knowledge and leadership to advance policy and health equity (Jagosh et al., 2012). Members of a marginalized group also gain new skills, insights, and recognition from their participation of a community-based research, demonstrating how the process can be aid personal development (Kennedy et al., 2019). The inclusive element of this method is identified as authentic as opposed to tokenistic, as the process adds value for participants on a personal level, in addition to the purpose of collecting data (Russo, 2012).

Despite the identified benefits, community-based participation within marginalized communities does not eliminate sensitivities or barriers toward data collection in terms of confidentiality, discomfort toward data collection, and fears of data misuse (Donse et al., 2013). However, the role of a community-based participation plays a part in guiding research as they have gained trust from the marginalized community due to their cultural understanding, language abilities, as well as networking competencies (Kennedy et al., 2019). Furthermore, employing RCs has become a common occurrence when undertaking quality health improvements and implementing new interventions (Miech et al., 2018). Adding monetary value to the role of an RC suggests acknowledgment in how beneficial it is to research outcomes. However, upon reflection of the Roma Connections’ RC, although the role decreases barriers in trust, networking, cultural competence, and language, it is important to embed power for all community participants. In this context, this was due to the Roma Connections group showing signs of over-reliance on the RC for engaging with the non-Roma world:

Besides trust, Roma families also lack confidence which is another obstacle to seeking help in the gadjo world. The weekly sessions where Roma women learn engagement skills too are a great way to bridge that gap. Further activities are needed for the Roma community so they can carry on developing trust and confidence in the gadjo world. (RC for Roma Connections, 2022)

A key outcome of Roma Connections is that successful community-based participation requires direct engagement with the setting or partnership provider, and the use of an RC acts as funnel to the source, as opposed to a messenger the community is reliant on. Furthermore, the involvement of partnership within the development of sustainable communities has been suggested to stimulate public participation and increase engagement with setting-based activities. The patterns of power and perceived authority and legitimacy from partnership are theoretically defined as “actor-spaces” and the “sociology of translation” (Davies, 2002). Promoting active contribution reconnects communities with local authorities and suggested to be a beneficial method for marginalized communities (Glimmerveen et al., 2021). The literature suggests the interdisciplinary partnership of Roma Connections created an “actor-space” to stimulate public participation and increase active engagement with the environment of the “gadjo” world. Furthermore, Roma Connections has influenced wider organizations to continue working with the Roma community, such as hosting education sessions for Roma children in schools and providing sessions for young Roma women. The case study of Roma Connections demonstrates how community-based participation research can be a catalyst for enhancing community connectivity and social inclusion. It is suggested that the used of community-based participation research to nurture a person’s perceptions of place within society and therefore influence their overall state of well-being.

Concluding Thoughts

Proposing traditional methods of research in partnership with marginalized communities can be challenging as the process can re-aggravate or reinforce experiences of social power imbalances and stigma. The purpose of this piece was to identify culturally responsive methodologies for conducting research with marginalized communities, by adapting traditional methods of research for capturing health and well-being outcomes from creative interventions. Based on the reflections of a U.K. case study, Roma Connections, we demonstrated how methods can be adapted; from the use of more inclusive tools, to actively employing a champion model in the work. We also revealed the upscaled interest in creative ways of addressing health inequalities and demonstrated the power of arts-based interventions. In this case, a theater working with the Roma women to act as a catalyst for connections, skills development and to raise awareness among key decision-makers. In doing so, we call for more research, particularly into the role of social prescribing and such groups, alongside more conscious efforts to create more inclusive methodologies for work in this burgeoning field.