Creating Participatory Research: Additional case studies

Chapter 1
Chapter 2
Chapter 3
Chapter 4
Chapter 5
Chapter 6
Chapter 7
Chapter 8
Chapter 9
Chapter 10

Chapter 1

Case study – Using community-based research within a regeneration context

European Funding was awarded to Objective 1 an organisation in South Yorkshire, England who ring-fenced this for communities within specific geographical boundaries across the district. This could be used for specific activities termed the development of people, skills and communities but not for investment in infrastructure such as community centres.  To access this each area had to produce an action plan based upon local research.  There were 40 community partnerships across South Yorkshire involved in developing action plans and within each of these areas researchers were working to gather data to develop the plans. My own research involved gathering information from those directly involved in this process, in effect researching the researchers.

There were several models of research applied within this context, with varying levels of participation and involvement across the models.  I developed a continuum of community-based research approaches based upon what the researchers told me about how they gathered data. This continuum was modelled upon control as well as involvement and participation within the empirical aspects of the community-based research. There were four clear types of research existing along this continuum within this context.

Type 1, a grass roots research approach characterized by local community members controlling the entire research process and fully participating in the empirical work.

Type 2, the grass roots contract approach, involved local community members simply carrying out the data collection aspect of the research process, therefore, volunteers controlled less and participated less in the empirical aspect of the work.

Type 3, the in-house contract approach, consisted of staff actually carrying out the research so there was less control by volunteers and no empirical participation by volunteers.

Finally, type 4, the out-sourcing contract approach, was made up of hired external professional help brought into the local area to undertake the required consultation. Again, there was less control and no participation in the empirical side of the work.

Many of the researchers involved reported that they learned during the process, so skills development was an important outcome for them as individuals.  However, power dynamics were an issue across all of the approaches.               

(adapted from   Warwick-Booth, L (2014) Using community-based research within regeneration. The role of the researcher within community-based approaches - exploring experiences within Objective 1 South Yorkshire. Community, Work and Family, 17 (1). 79 - 95. ISSN 1366-8803 DOI: https://doi.org/10.1080/13668803.2013.847059)    

Chapter 2

Case study – Co-producing research with older people

Co-production can take place with a variety of client groups according to the examples that are available in the published literature and on the internet, where case studies abound in the fields of mental health, health and social care and research with children as well as with older people. Buffel (2018) outlines an example of co-research with older people working as peer researchers, as well as taking a leading role in a study that was exploring age-friendly communities.  The older people conducted 68 interviews with socially isolated local residents, aged over 60. Buffel (2018) describes the positive aspects of this model of co-production as challenging ideas about older people as passive victims in relation to community change, and the widening out of the research due to the involvement of older people.  The challenges described include the sustainability of this approach, as well as power differentials that existed amongst community members.

We have also been working on co-producing research with older people, as part of the evaluation of a project called Time to Shine in Leeds, funded by Big Lottery as part of its Ageing Better Programme. Ageing Better is a six-year, £78 million investment to improve the lives of people aged over 50 by addressing social isolation and loneliness within local communities, aiming to support them to led more fulfilling lives. A national evaluation of this programme is taking place, as well as local evaluations.  We are part of the local evaluation team involving 3 northern universities, evaluating the results of the funding allocated in Leeds.  Our approach to co-producing this research has involved the training of older people in focus group methods.  These peer researchers then work with university researchers to collect data from other older people using focus group discussions. An evaluation sub-committee established at the start of the programme has membership including older people (some volunteers and some professionals), who feedback about the evaluation approach and tools on a regular basis and some are involved in the analysis of internal monitoring data such as individual and organisational case studies.  Feedback from one volunteer who had an array of Patient Public Involvement experience led to the creation of a project called ‘Volunteer Listeners’ in which older people are offered training and support to enable them to listen to the stories of other older people who are participating in funded project activities.  The Volunteer Listeners work in pairs to hold conversations with other older people, enabling them to tell their stories in an informal community setting.  The stories are written up by the volunteers and sent to a member of the evaluation team for analysis, to add depth and detail to the data set collected by the professional researchers. 

This informal approach has broadened the involvement of older people within the data collection process and enabled the evaluation team to widen their understanding of the complexities of social isolation. However, the older volunteers were in the main middle-class white ex-professionals, who were already involved in volunteer activities therefore several acknowledged that whilst they were able to relate to others of a similar age, their own experiences of social isolation were often limited when compared to the most ‘hard to reach’ socially isolated individuals.

References

Buffel, Y. (2018) ‘Social research and co-production with older people: Developing age-friendly communities’ Journal of Ageing Studies 44, pp. 52-60

Chapter 3

Varaden D, McKevitt C, Barratt B (2018) Making the invisible visible: Engaging school children in monitoring air pollution in London. Research for All 2(2) 267-288

This participatory study aimed to investigate the impact of collecting personalised data on air pollution exposure on children and parents at a primary school in London, UK, in terms of perceptions of and responses to air quality. 400 children from the school learnt about air pollution in school, and a subset of 10 children measured the air pollution they were exposed to as they travelled to and from school using portable exposure monitors and GPS watches. They shared the data with the school. The research took a mixed methods design approach to measure the impact of the approach on the school community, using observations, surveys of all school children and their parents, and interviews with the parents and children who collected the data.  Most participants said that having access to data they had collected themselves made them more aware of air pollution and more motivated to reduce their exposure. The children who took part in the projects began thinking about ways they could influence other peoples’ behaviours, such as anti-idling campaigns, and encouraging cycling or walking to school.

Chapter 4

Case study – Ethics for Participatory Visual and Digital Methods

There is a growing literature about using digital participatory methods of data collection, with such approaches described in positive terms (Shaw 2016). Whilst these methods have been described as a mechanism to enable new social dynamics to emerge especially for marginalised social individuals and groups (Kindon 2003), their application in practice raises several ethical debates.

In using participatory video for one project involving women in a community development context, and another study with men on a drug rehabilitation programme, Shaw (2016) identified a number of critical ethical questions.  She notes that the territory of social research is messy and comments that whilst researchers may wish to use participatory approaches to be more ethical, such notions are idealistic. Shaw (2016) outlines several general ethical issues for consideration when using film during participatory research projects such as power dynamics, risks and the potential generation of new ethical dilemmas with the video dynamic creating an additional layer of complexity.  In reflecting upon the two projects already described, Shaw (2016) describes a number of ethical issues that she encountered:

• Participants felt uncomfortable when seeing themselves on film. For some this shifted, and they became less camera conscious as the project developed but this was not the case for all of those involved.  This raises questions about the practice of using majority experiences to justify the use of video;
• Choices to participate happen before filming, and this raises challenges in terms of building informed consent before the full consequences of participation are understood by some;
• Vulnerable participants were also less likely to express their emotions and there is not always enough time to provide them with the support that they might need;
• If the research takes place in a therapeutic context, internal interactions and broader sharing may not be suitable for wider viewing.

Shaw (2016) points out that research relationships are contradictory when using participatory visual methods, so practice is always a negotiated balance.

Gubrium et al (2014) also acknowledge the tensions in negotiating means and end when using digital storytelling as a participatory approach.  They suggest that researchers need to ensure that the process is safe, enjoyable and meaningful for participants as well as thinking about the final product from the research.  Ethical participatory practice should not be decided at the start of a digital project but considered throughout as ethics are about situated practice.

Chapter 5

Van der Vaart, G., van Hoven, B., & Huigen, P. P. (2018, May). Creative and arts-based research methods in academic research. Lessons from a participatory research project in the Netherlands. In Forum Qualitative Sozialforschung/Forum: Qualitative Social Research (Vol. 19, No. 2).

Researchers in the Netherlands carried out a participatory research project as part of a broader study exploring the value of arts-based community activities for building resilience in communities. The research was conducted in a village of approximately 600 residents, which was experiencing social and economic challenges, but still had an active village life with many artists in residence. The participatory research included three stages in which creative and arts-based data collection methods were used: walking interviews, group discussions and a creative workshop that resulted in an exhibition in the village. During the walking interviews, the 28 participants were asked to take the main researcher on a ‘tour’ through the village, showing the places that were meaningful to them and the places that they saw as facing changes or dispute in the community. Participants were asked to use a camera to take pictures of the places they pointed out to the researcher. Participants were also asked interview questions about their opinions and experiences of the various arts activities and artists in the village, the village community and changes and potential changes to the village.

For the second stage, participants were invited to the village hall for one morning for further group discussion of the places they had photographed during the walking interviews. Sixteen participants were divided into mixed age groups. The session started with an icebreaker game to help participants get to know each other and create a relaxed atmosphere. All the photographs were laid out on tables and in the icebreaker, each participant was asked to choose one photograph that particularly appealed to them, and explain to the group why they had chosen it. Then, each discussion group discussed 3-6 photographs using some guiding questions to discover each other’s opinions of and experiences with places in the village and to reflect more deeply on the meaning of those places. The discussion groups were also provided with large sheets of paper and coloured pens and asked to make a poster to present the main results of their discussion to the whole group. The whole group then reflected on the main results of the morning.

For the third stage, nine participants took part in a creative workshop in the village hall, with four students from an art academy helping them with their visualisation processes. A few weeks before the workshop, participants were sent a printed ‘inspiration booklet complied by the researcher, which consisted of an overview of the photographs taken during the walking interviews and selected quoted from the walking interviews and group discussions. The aim of the workshop was to visualise some of the stories associated with these places in the village. Participants chose who they wanted to work with and were offered a range of materials to work with, assisted by the art academy students. At the end of the morning the students presented their artworks to each other, and a few weeks later a one day exhibition of the artworks, photographs and some short texts explaining the themes was held in the village hall.

Chapter 6

Case study – A model for participatory analysis

Lincoln et al (2015) present a model for the development of a CBPR based on the approach that they implemented in practice to involve young people aged 18-25 in mental health service research.  Their detailed model involved young people being trained as research associates, and then subsequently being fully included in all aspects of the research process.  The research took place in Boston, USA and was supported by a well-established CBPR partnership which included collaborators from academic settings, other research organisations, mental health services, advocacy organisations and support groups. The partnership provided support and insight to the research team.

Young people were recruited from a local community to work as community research assistants.  40 applied, 14 were interviewed by the principal investigators and then 6 appointed. Those appointed received extensive training over a 16 hour period and took part in a written examination as well.

In terms of analysis, the community research associates were provided with additional training in qualitative approaches, both deductive and inductive coding.  They were provided with a demonstration of a group approach to coding using example transcripts, and then were introduced to specialist qualitative software, used to enter data, code, sort and retrieve it. 

The community research associates conducted interviews, recorded them and then completed the transcription, to specified guidelines.  Transcripts were reviewed by a member of the research team, and feedback was provided. All members of the research team went on to be involved in reading transcripts and providing analysis memos, as a basis for developing themes and building the main findings. The lead researchers reflected that involving community research assistants in the analysis processes was important as the academic team were challenged to question their own pre-existing assumptions, which they argue is a critical aspect of qualitative analysis.

Several of the research associates moved onto educational and employment opportunities, and other agencies started to include young people in their own work.  However, the impacts of this approach on study participants were not documented.

(adapted from Lincoln, A, K., Borg, R., & Delman, J. (2015) ‘Developing a Community-Based Participatory Research Model to Engage Transition Age Youth Using Mental Health Service in Research’ Fam Community Health 38, 1, pp. 87–97.)

Chapter 7

Case study – Dissemination involving participants with disabilities

Chapter 1 defines inclusive research, as an approach that involves doing research with people who have disabilities (Nind 2017). Walmsley and Johnson (2003:10) say that the approach “involves people who may otherwise be seen as subjects for the research as instigators of ideas, research designers, interviewers, data analysts, authors, disseminators and users.” Block et al (2006) describe the dissemination approach used in a 3 year participatory research project in the USA, called Project Shake it Up. The study aimed to promote health for individuals with spinal cord injuries and to strengthen access and presence within the community.  Dissemination of the project findings about quality of life improvements and less social isolation for participants included some standard academic publications such as conference presentations and published journal articles as well as more practical resources, such as an interactive manual.  Project participants and advisory board members have had project outputs shared with them but this was led by the university academics.  The project team suggest that dissemination is part of ongoing partnership development, and that the process of dissemination needs consideration alongside the products, when working with the disability community. Di Lorito et al (2017) in a systematic review of the literature that focused upon co-research with adults with intellectual disabilities, offer a model for qualitative studies.  This model highlights the importance of training for co-researchers with intellectual disabilities should they be involved in presenting research findings.  It also notes that they can comment upon drafts of findings, and work in an advisory capacity to support the research team. However, Strnadova & Walmsley (2017) report wide variations in the ways that inclusive research teams report on their work in peer reviewed articles and therefore more attention needs to be paid to dissemination issues. The attribution of authorship, descriptions of the writing process and acknowledgement of the contributions of co-researchers remain under acknowledged. The reflections and views of co-researchers in relation to the research process frequently remain unclear.  They also suggest that questions remain about the usefulness of co-researcher involvement in dissemination that is specifically for academic purposes when shared ownership approaches are often preferred by co-researchers from the disabilities community. Gilbert (2004) argues that research findings can be disseminated in a range of accessible forms for people with learning disabilities, and that accessibility does not mean anti-intellectualism or a lack of rigour.  He acknowledges that the majority of academic journals demand formats that are not accessible for people with learning disabilities.  Therefore he suggests the use of different dissemination formats to tackle tensions between academic and disabilities community requirements.  

Chapter 8

Peer research with under 16s in a Scottish town

Safeguarding

in the introductory session, the researchers had a frank discussion with the young people about safety, asking them to create a set of rules for themselves (e.g. no climbing trees to get a good photo!).  As always, the young people came up with many scenarios we hadn’t considered.  They thought about how to keep their friends safe and how to avoid any issues e.g. taking photos of people’s homes, making sure to stop and think “how would you feel?”

Compromise

Some things the group ideally wanted to do were not feasible in the timescale or caused concerns about safety.  The young people had ownership of the project but we were clear about the limitations we could not avoid – mainly time and research methods for ethical reasons.

Let’s see to what extent this small participatory project met the requirements for CBPR:

1. Did the community members conduct the research alone?

Yes, the young people decided on the research questions and worked independently to collect data to answer them.  The method was chosen by the university researchers (photovoice) because of the ethical challenges that would arise in interviews or focus groups, for example. 

2. Did the research seek to serve the needs of the local community?

The young people decided on the research questions that met needs they had identified.

3. Did the community own the research?

The data was shared with the research team and incorporated into the overall research project on community control, but the young people had equal ownership.  The research project funded a photography workshop and a photo exhibition to share the findings from the Photovoice project with their community.

Chapter 9

Community Campus Partnership Using CBPR

Petersburg, Virginia is a city with significant economic and health inequalities following the decline of its industries. The city has the highest proportion of Black/African American residents in the state and also high rates of poverty.

The existing CCP between the Virginia Commonwealth University and a community development organisation in Petersburg decided to use CBPR to identify existing and potential community assets related to physical activity and healthy food options that could be considered for future pilot interventions to address obesity. Obesity was raised as one of the main issues concerning the community because 36% of the adult residents were obese. Community ambassadors for the partnership introduced the idea of asset mapping and the project to community members prior to it starting.

The project involved local residents in the mapping process to build trust between community members, share skills, and foster a sense of ownership in the work.  Young people were recruited as community researchers because they have important roles in changing health outcomes in the family and community.  Co-produced research with young people (n=13) from Petersburg and university students (n=9) combined community knowledge with technical expertise.

The young people and students received training together about CBPR, asset mapping and the project. The project leads also ran teambuilding activities and organised meetings for the young people to update the community ambassadors and leaders on their progress.     

The group was divided into five teams containing a mix of students and local young people. They used ‘community walks’ with an area map to locate assets and interviewed community members (including local shop owners, professionals, recreational staff) about them. Teams walked around their wards at least 6 times over 8 weeks.  The students compiled the asset logs produced and entered the data into GIS mapping software. 

The assets were categorised into 12 groups with input from the research team, which were then verified by engagement with the wider community. 

The young people and students reported that the mapping process enabled them to see assets and the community from a new perspective – the study underlined the difference between what ‘insiders’ consider to be an asset compared to ‘outsiders’, and benefited greatly from the different knowledge and skills brought by all of the participants through CBPR.

Reference

Mosavel, M., Gough, M. and Ferrell, D. (2018) Using Asset Mapping to Engage Youth in Community-Based Participatory Research: The WE Project. Progress in Community Health Partnerships: Research, Education, and Action, 12(2), pp.223-236.

Chapter 10

Case study – The State of Women’s Health in Leeds

In 2018, I was involved with other professionals in working to produce the State of Women’s Health Report in Leeds. The focus of my work was to represent women’s voices and their associated health experiences; one component of a broader suite of work.  The full report – Women’s Voices – is available here, along-side the other reports that made up this work https://www.womenslivesleeds.org.uk/womenshealth/

The voices research report was a co-produced approach with other professionals, such as colleagues from the Local Authority, colleagues from the not-for-profit sector, and me as an academic.  Two of us (one non researcher and me) worked together to speak to women across the city by accessing them through existing groups (equalities hubs).  We spoke to 51 women in focus groups segmented according to age, sexuality, ethnicity and other characteristics.  Asking them to report upon their health experiences as a starting point enabled them to voice their views in an open manner. This research was participatory in design in the sense that it involved professionals who were not researchers, but whose ideas were used to shape the approach to the data collection, and to gain access to the sample.  The report was co-produced by a researcher, and a non-researcher which influenced it stylistically.  It was less academic than a usual university report  and focused upon detailing the key messages we heard from the women, as well as what they told us they wanted to see happening – labelled as take-away actions. Whilst the research gathered the views of women across Leeds, they were participants rather than co-researchers in this instance.

Following on from all of the reports about The State of Women’s Health being published, an event was held for professionals to discuss the process and detail the findings to other professionals working in the city.  A further event was also held for organisations working in the Third Sector (called the Third Sector Briefing event – see the slides on the web-site link above).  Both of these events can be described as non-traditional dissemination with shared knowledge assumed to be the resulting impact.  Furthermore, the Local Authority recognised the importance of the menopause for women and has implemented a range of workshops using peer support within their organisation, an applied impact influenced by the findings of this research.  It is worth noting that the report coincided with a UK national awareness campaign about the menopause, which is likely to have influenced the uptake of our recommendations in this area.

Third sector partners also used the information from the reports to submit a successful funding bid which aims to create a Women Friendly City in Leeds - https://www.womenslivesleeds.org.uk/women-friendly-leeds/ The aims of this work link to the evidence generated in the report, so further funding and a dedicated project are also impacts that resulted from this project.