Introduction

Patient and public involvement (PPI) is a major focus of policy and practice in health and social care research. The aims of PPI are multiple, including empowering service-users, increasing representation and improving the quality of research (Involve 2012). There is growing evidence that it has positive effects in research, including improving recruitment in studies and increasing its relevance to service-users (Russell et al 2019).

In participatory research, ordinary people generate knowledge in addressing their concerns as members of society (Park 2006), working alongside academics as ‘peer researchers’ who explore research questions from the perspectives of their own communities. Involving the public as participatory co-researchers is one of the highest levels of PPI (Involve 2012). However, the extent to which PPI continues throughout a study varies – Jennings et al (2018) suggested that involvement can be inconsistent, once funding has been awarded.

PPI is important when studying the health of ethnic minorities, who are less likely to be included in mainstream studies. Roma, Gypsies and Travellers are ethnic minorities who share a nomadic background and history of oppression, and experience severe health inequalities. Gypsies and Travellers are among the oldest ethnic minorities in the UK, while Roma people from continental Europe have migrated to the UK in the 21st century (Condon et al 2019). Peer researchers from a variety of marginalised and vulnerable groups have collaborated with academic researchers to bring about more equitable and open engagement (di Lorito et al 2017); these groups have included Roma, Gypsies and Travellers (Jackson et al 2016, Smith et al 2020). However, it is complex to involve peer researchers from marginalised groups (Freitas and Martin 2015), particularly when exploring sensitive subjects. Participatory research is well-suited to working with indigenous people as it is collaborative, respectful and reciprocal, reducing the likelihood of oppression and exploitation (Mitchell 2018).

In cancer research, PPI frequently takes place with the most socio-economically advantaged patients, while men, young people and ethnic minorities are often under-represented (Pii et al 2019). Cancer is a highly sensitive subject for many people, often accompanied by fear and fatalistic beliefs (Licqurish et al 2017, Vrinten et al 2017). Studies of Gypsies and Travellers’ attitudes to cancer have revealed cultural taboos, which can extend to avoiding saying the word ‘cancer’ (van Cleemput et al 2007, Berlin et al 2018, Millan and Smith 2019).

The researchers’ persona influences the quality and content of qualitative data they collect (Oakley 1981, Richards and Emslie 2000), so it is important to provide contextual detail when reporting studies. Russell et al (2019) promoted better reporting of PPI, including discussing its challenges and disadvantages. Staniszewska et al (2017) developed the Guidance for Reporting Involvement of Patients and Public checklist, to improve reporting of the effects of PPI.

A research area of developing interest is peer researchers’ accounts of their experiences of involvement in studies (Devotta et al 2016). In this paper, we will look in detail at peer researchers’ experiences of interviewing, using direct quotes from contemporaneous, audio-recorded debriefs that peer researchers made when collecting data.

Our study

We have reported elsewhere on our study of the views of Gypsies, Roma and Travellers concerning cancer prevention, treatment and care (Condon et al 2021a, 2021b). This study was highly participatory, with members of those communities involved in identifying the research topic, bidding for funding, collecting and analysing the data, and disseminating findings. The findings were disseminated through academic routes such as conferences and journal articles, as well as at workshops to which community members and professionals were invited.

We obtained ethical approval from a university ethics committee before collecting any data. Peer researchers carried out between one and 10 interviews each, with two co-authors (JC and DLM) each conducting 10 interviews. More accurate information may be obtained when participants speak in their own language (Liamputtong 2010), so interviews with Slovakian Roma people were conducted in Slovak or Romanes – a language spoken by people of Gypsy heritage – and subsequently translated into English.

Peer researchers (n=6) were women and men aged 18-58 years old from the same groups as the participants – Gypsies, Travellers, and Romanian and Slovakian Roma. They were recruited through third-sector organisations, had previously acted as advocates for their communities and were accustomed to working with non-Gypsies (‘gorje’). All combined the research with other employment and were reimbursed for their time and expenses. It was important to the peer researchers that the interviewees also received a financial ‘thank you’ for their time and contribution – they had experience of this not being offered in previous projects, which had made their role harder.

Training consisted of a two-hour session on collecting qualitative data, with a focus on ethics and interviewing skills. This brief training was all that was feasible, given the time restrictions of the project and the peer researchers’ busy lives. Field notes from peer researchers were collected as audio-recorded debriefs after each episode of data collection; one peer researcher also voluntarily wrote a reflection after her first day of interviewing. Debriefs were unstructured and focused on issues of priority to the peer researchers, such as the process of interviewing and the themes arising. All the debriefs were conducted in English.

When the debriefs were transcribed, it was apparent that they contained valuable insights into the role of peer researchers. We agreed to present these in a co-written article.

Peer researchers’ experiences

Discussion

The experiences of peer researchers, particularly those from marginalised groups, is underexplored in PPI (Pii et al 2018). These reflections are relevant to participatory and cross-cultural research and highlight peer researchers’ skills in collecting data (Box 3). Peer researchers are often relegated to the role of ‘watching the experts at work’ (Bissell et al 2017), but they led on data collection in this study, and used their social and cultural skills to obtain data that met its aims and objectives.

Establishing trust is important in cross-cultural qualitative research. Roma, Gypsies and Travellers are often mistrustful of people from outside their community, particularly authorities and institutions, which lessens their participation in research (Brown and Scullion 2010). It is therefore vitally important to include members of the community in the research team, to reassure participants and encourage openness (de las Nueces et al 2012, Di Lorito et al 2017). Participants were reticent about being audio-recorded, and the peer researchers strove to give reassurances about anonymity. PPI can improve recruitment and raise capacity and capability among peer researchers (Russell et al 2019).

However, it is rarely noted that shared ethnicity can be a barrier as well as a facilitator to collecting data. In our study, peer researchers identified their shared ethnicity as a two-edged sword that could assist in achieving openness in discussing experiences, but also inhibit disclosure. This was linked to cancer being a taboo subject in their communities and thus embarrassing to discuss. In addition, there were cultural barriers to conducting an in-depth interview containing probing questions.

Shared ethnicity provided an entry point to participation, but researchers then needed to use their skills of social interaction to obtain data. Romanes-speaking peer researchers showed ingenuity in conducting interviews without mentioning the word ‘cancer’, which has powerful negative connotations. Gypsy/Traveller peer researchers were challenged by gender stereotypes of women not discussing sensitive health topics with men. All peer researchers demonstrated a sophisticated understanding of how to support interviewees to express their views to the extent they wished, while also attempting to obtain high quality and relevant research data.

De Freitas and Martin (2015) commented on the different levels of readiness of people of different ethnicities to participate in research, which relates also to socio-economic status and educational background. In this study, many participants were not expansive about their views or confident about what to say, and peer researchers provided reassurance that their views were valued. For Roma, it was important to speak in their own language.

Peer researchers were aware of their dual role and the need to belong to two camps – the community being studied and the research team – acting as mediators between them both. The pastor’s comment about research participants potentially being ‘animals in a zoo’ highlights the importance of doing research with people rather than to them (Involve 2012). Minority groups may rightfully be distrustful of a system that overlooks their needs and researchers must build bridges to ensure their inclusion.

Emotional labour was required to obtain the data required and debriefs were a good way of supporting peer researchers to reflect on their multiple roles. In these debriefs, issues not previously considered, such as the inherent barriers of shared ethnicity, were raised. Peer researchers are rarely involved in analysing the data collected in the study (Jennings et al 2018), as they are often no longer involved at that point due to the pressures of time and funding. However, the debriefs gave them the opportunity to identify themes, which became the foundation of data analysis. Their involvement provided assurance that themes were not just a product of academic insights.

Conclusion

PPI is a policy ideal and increasingly a prerequisite for research funding, but there remains a lack of transparency in how it is reported. This article has illuminated the strategies used by peer researchers to collect data about a subject of great sensitivity in their communities, demonstrating their ability to create the trust. When exploring the views of vulnerable and excluded groups, peer researchers perform multiple roles to bridge the gap between the researchers and the researched.