‘Stories from a Very Different Salford’: Co-designing and co-producing a biographical place-making animation with the Open Doors research group
‘Stories from a Very Different Salford’
Co-designing and co-producing a biographical place-making animation with the Open Doors research group
Open Doors research group, Cathy Riley and Caroline Swarbrick
This chapter presents the development of a participatory case study project entitled ‘Stories from a Very Different Salford’ (see www.youtube.com/watch?v=DB_ bTDB2ROO). This co-produced project was conceived and conducted by members of the Open Doors research group and facilitated, where necessaiy, by Cathy Riley (Open Doors Sendee Manager) and Caroline Swarbrick (Lancaster University). The participatory case study approach directed the research agenda, which was creatively со-designed by the Open Doors research group. This, in turn, promoted the values of inclusivity and shared decision making. Through this lens, people living with dementia and their care partners (a self-defined term) were seen to be both the ‘cases’ as well as the researchers. This dichotomy of roles will be shared in this chapter as well as the process of undertaking the research work that led to the co-production of an animation (‘ Stories from a Veiy Different Salford’) which shared lived experience around biographical place-making in Salford, United Kingdom (UK). The reflexivity of a participant co-research role will also be discussed in terms of‘role facets’, concluding with the challenges and facilitators of drawing a participatory case study to a close.
The majority of definitions of dementia focus on the clinical symptoms, biomedical pathology and, occasionally, the psychosocial understandings of dementia. Within participatory research, there is a shift away from the diagnostic presentation towards a meaningful lived experience approach. Thus, we consider dementia as a broad temi, which reflects the ongoing changes in how an individual processes and retrieves information, which subsequently impacts on other areas of an individual’s functioning, such as behaviour. As a result, the individual will often develop coping/management strategies in order to adapt to perceived changing environments (in its broadest sense), as well as adapting to changes in roles and relationships, which we consider to be a shift in power dynamics. This intrinsic definition provides a meaningful description from the perspective of what it means to live with a dementia diagnosis. It is also in response to the rising prominence of people living with dementia within the international, political, strategic and academic arenas (for example, see Mittler, 2015; 3 Nations Dementia Working Group www.3ndementiawg.org/; special edition of Dementia: The International Journal of Social Research and Practice 2020, 19(1)). To put this into context, globally in 2019, there were an estimated 50 million people living with dementia (Alzheimer’s Disease International, 2019). During the same time period within the UK, figures indicated that around 885,000 people were living with dementia (Wittenberg et al., 2019). However, less than 4% of people living with dementia in the UK were involved as research participants during this pexiod. Furthermore, those involved in research outside of the participant role was negligible, highlighting a missed opportunity for people living with dementia and the academic/ clinical community alike (National Institute of Health Research, 2020). Within this participatory case study work, we illustrate the complexities and solutions to designing and undertaking a collaborative project.
The Open Doors Dementia Service is based in Salford (Greater Manchester, UK). Founded in 2010, Open Doors is funded by Greater Manchester Mental Health National Health Service (NHS) Foundation Trust and serves as a support network for people living with dementia and care partners, providing post-diagnostic education and opportunities for peer support. Open Doors encourages people living with dementia to facilitate and participate in its activities, including numerous support groups, dementia cafes, a book club and dining group. During 2014, the Open Doors research group was established with a remit of developing and leading on a neighbourhoods-focused research project based on the priorities of the group. Over 45 people living with dementia (with and without capacity) and care partners have been involved in the research group smce its inception. The Open Doors service manager (Cathy) and academic researcher (Caroline) were also regarded as members of the research group as we will describe later in the chapter. The initial project, ‘The Changing Face of Our Neighbourhoods’ (2014-2018), was a suite of three cultural heritage films based on a co-operative inquiry methodology and is published elsewhere (Swarbrick et al., 2020). The filming process generated an additional ten hours of unused footage, which was used as the basis for the project presented in this chapter (2018-2019).
Our initial project was based on the principles of co-research (Swarbrick et al., 2018; Swarbrick et al., 2019), but reflections from the Open Doors research group members indicated a need to re-balance the role of‘researching ourselves as well as each other’. Thus, here we make the distinction from our original concepmali- sation of co-research as ‘a more collaborative partnership between groups of people living with dementia, academic researchers and sendee providers* (Swarbrick et al., 2019) to a framework of participant co-research, which we describe as an ‘interchangeable role between participant and researcher based on joint decisionmaking and shared understanding’ (p.3167). Whilst it would be unrealistic to expect all decisions to be unanimously agreed, our perception of ‘shared understanding’ relates to the acceptance that each individual brings a different perspective embedded within diverse experiences. The experiences are underpinned by mutual respect, tolerance and understanding with a ‘strong emphasis on trust and relationship building’ (Caine, 2014, p.94).
Ethical issues around the involvement of people living with dementia is not a new phenomenon and this project was no exception (Sherratt et al., 2007). As well as involving people living with dementia who may not have capacity, an added layer of complexity was that the involvement of participant co-researchers is far from commonplace, more so in the field of dementia care. Implemented from the previous project, we had a ‘tried and tested’ participant co-researcher strategy, which included a distress protocol and procedures in the event of disclosure of abuse amongst further key safeguarding documents.
Assessing capacity was on an ongoing basis, supported by Cathy as service manager (and also embedded within the local memory assessment team service), who had day-to-day interactions with research group members. For those who were considered not to have capacity, the British Psychological Society approach was adopted (Dobson, 2008). This meant that a personal cousultee (who in this project were family members involved as participant co-researchers) were approached and provided written permission for the individual to be given the opportunity to take part. Given the research group was affiliated to a local NHS Trust and the involvement of people who were considered not to have capacity, ethical approval was applied for from the UK NHS Research Ethical Committee body, as well as the Health Research Authority and university approval. An interesting area of consideration was that the NHS Research Ethics Committee questioned whether this participatory approach to research was, in fact, ‘research’. Besides the fact that, given academic involvement, the project would trot be able to go ahead without ethical approval, we argued that participatory case study research should also be subject to ‘the same standards of scrutiny and critique we would apply to other research approaches’ in order to further methodological debate (McLaughlin, 2010, p. 1591). Furthermore, by request of the research group, the option for participant co-researchers to be identified by their given names was included in the consent form, alongside the option to be referred to by a pseudonym. After much debate, particularly around consent and the science behind the methodology, ethical approval was granted (REC reference 16/YH/0507).
Roles and responsibilities
As participant co-researchers, the roles of both Cathy and Caroline also extended to administrator (to ensure compliance with research governance and organise meetings) and facilitator (to ensure meetings ‘kept on track’ and to provide additional support to individuals within the group as needed). These roles will be discussed further within the context of reflexivity later in the chapter. For the purposes of this project and all writings associated with it, we use the terms ‘we’, ‘us’, ‘our’, ‘group members’, ‘the group’ ‘collective’ and ‘participant co-researchers’ interchangeably. We now present the evolving process of our participatory case study project, ‘Stories from a Very Different Salford’.
Participatory case study work in practice: Stories from a Very Different Salford
Monthly meetings took place at a local community resource centre over the course of 13 months, with two hours per meeting (with a 15-minute break). There was an average of 18 people living with dementia and care partners for each session, with a total of 45 people taking part across the project. Attending meetings did not rely on attendance at or recalling activities undertaken dining prior meetings as each session started with a summary of previous activities. Meetings also ended with an agreed and clearly defined action plan (when appropriate) affectionately referred to by participant co-researchers as ‘homework’ for the following meeting.
Given everyone in the group was already familiar with each other (through the initial project and involvement in wider Open Doors activities), we opened the first meeting of this project by revisiting some of the ‘ground rules’ which were set by the group at our inaugural meeting in 2014. This also enabled us to reconnect with the principles of participatory research, reinforcing the partnership working and collaborative approach. We also took the opportunity to reflect on shared decision making and how opposing views could be managed, drawing on some of the difficulties encountered during the previous project. Inherent in this transparency was recognition and the ability to manage expectations of each other as participant co-researchers.
As previously described, ethical approval to produce an animation from the additional video footage from the initial project had already been awarded. We recapitulated by watching some of the videos we had produced and started to think about the focus and potential storylines of the animation and, in particular, considering the potential target audience. Participant co-researchers considered involving a locally based animation company as an important aspect of the overall narrative. Participant co-researchers were also unanimous in wanting to direct the focus of the animation towards older primary school children (around 8-11 years old). The emphasis of the animation was to be centred on ‘how we used to live’, particularly the sense of community in the absence of wealth and how regeneration fragmented communities on physical, social and cultural levels. Such areas of discussion inherently evolved into themes and key messages for the animation. The themes centred around ‘neighbourliness’, ‘participation in communal activities’ and ‘upholding tradition’, rooted in the late 1940s to the 1960s.
It became clear early on that there was a need to escalate and centralise the creative aspects of the project. This was particularly important in retaining engagement with individuals with lessening verbal contributions. To complement the visual aspect of the animation, the research group was also interested in creating melodic storylines as part of the wider biographical narrative. Given previous engagement with Manchester Camerata through the Music in Mind project (via Caroline - and see Chapter 9), we agreed to invite some of the musicians to guide and suppoit us in our music-making endeavours. Participant co-researchers were keen to embrace new experiences and leam new skills alongside other members of the group, considering this to be an integral part of the project.
Action plan: Consider potential storylines and key messages for the animation for the next meeting (all).
After a summary of the previous meeting, the group welcomed Beena Khetani (producer and director of the films featured in the initial project). A discussion ensued around storylines and key messages that we wanted to portray within the animation. Participant co-researchers shared some ideas around what life was like growing up in the area. All participant co-researchers had historical and biographical connections to the locality, either as having been bom locally or having moved to the area many years previously. We spent a substantial amount of time during the meeting revisiting some of the films produced in the previous project to further refine some of the potential storylines rooted in historical and biographical narratives. Some members of the group recognised this practice as ‘researching ourselves and each other’.
A local animation company was recommended by Beena and was keen to be involved in the project. The company (Tracks and Layers) had a wealth of experience producing children’s educational animations. During the meeting, we explored some of the different animation styles designed by the animation company to decide, as a group, whether we would like to invite them to produce the animation. Given their portfolio, style of animation and local residence, participant co-researchers considered the company a natural fit for the project. When put to a vote, the most favourable animatic style (by far) was democratically chosen by the group.
Action plan: Tracks and Layers to be invited to subsequent meetings (Caroline); participant co-researchers to continue to define the storyline of the animation (all).
Following a summary of meeting 2, the group welcomed members of Tracks and Layers. Participant co-researchers shared ideas of potential storylines and what they envisaged as the key messages of the animation. It became clear during this particular discussion of the number of negative recollections, particularly in terms of the impact of regeneration and how it dispersed communities and broke up extended families. We then took some time to reflect on those key messages in that whilst we wanted to depict a realistic portrayal, we also wanted to ensure that the audience (children) would gain a positive understanding rather than a focus on the negative aspects of the local historical narrative. It was at this point that we explored some of the key differences between the 1940s and 1960s and the present day, empathising from a child’s perspective. The general response was around the use of mobile phones, portable computer devices and the role of social media. With this in mind, we wanted to incorporate these areas into the animation as a way of connecting the present day with a historical context. The animation team shared some ideas around a central character in the present day, who was transported back in time. The participant co-researchers supported the idea. Tracks and Layers also presented several animations using the style chosen at the previous meeting. This was to give a flavour of how the style could be adapted for our particular storyline. Participant co-researchers remained supportive of this style of animation moving forward. It was during this time we also took note of how music was used in the animations to help tell the story.
Action plan: Start planning a storyboard based on the discussions from today’s meeting (Tracks and Layers and Chronicle Films); invite Manchester Camerata to the following meetings and arrange a ‘taster session’ (Caroline).
Once we had recapped on our previous meeting, we welcomed musicians from Manchester Camerata for our ‘taster session’ (see Photograph 10.1). The purpose of this was to expose participant co-researchers to different kinds of creative expression and also to consider different ways in which music could be used to tell a story. There were no expectations of any musical ability or skill and the intention was for participant co-researchers to connect with the musical sound, whilst developing their own individual rhythm and style.
Several participant co-researchers mentioned the impact of how some individuals (who did not actively participate with verbal discussions) had really engaged with the creative expression through the instruments. The skill of the musicians really came to the forefront in that they recognised at what point to step back and support ‘individual solos’, giving the opportunity for participant co-researchers to take the lead. For the musicians, this led to a shift in role from leader to responder. All other members of the group mirrored this shift, which was quite an emotional
Photograph 10.1 Music-making.
experience for all those present. We were also able to explore some of the ways in which music could be used to depict certain sounds, such as emotions, which involved speed and volume. All participant co-researchers chose to be actively involved in this activity.
Action plan: Manchester Camerata to join meetings 6-12.
Following a summary of meeting 4, Tracks and Layers and Beena presented a working storyboard. The storyboard was a textual amalgamation of the shared decision making in meetings 2 and 3, which drafted the outline of a potential storyline for the animation. This gave participant co-researchers the opportunity to drive a refined and occasionally historically corrected storyline, whilst re-order- ing sciipts for flow and narrative. This was an immersive and reflective process which intermittently required additional participant co-researcher one-to-one support from Cathy. Based on the animation style chosen in meeting 2, Tracks and Layers presented some examples (based on the working storyboard) designed by the illustrator who was coimnissioned to work on the project. This was helpful in supporting participant co-researchers to comiect with the visual attributes of the animation process, as well as making key decisions in its development. Tracks and Layers also demonstrated the intricate animation process.
Discussions amongst participant co-researchers occasionally became quite conflicting, resulting in both Caroline and Cathy switching to the role of facilitator in managing disagreements. These disagreements centred on factual content, which needed careful management and support. Whilst some of the members mentioned (on a one-to-one basis) that this could be as a result of ‘having dementia’, the facilitators were keen to highlight that everyone had different experiences whilst growing up, lived in different areas in the locality and were different ages. Therefore, there were a range of factors which could explain differences in experiences and the understanding of historical events.
Action plan: For the following meeting, bring in historical artefacts and photographs that focus on the changing local environment (all).
Once we had given an overview of the last meeting, we continued our music- making activities initiated by musicians from Manchester Camerata in meeting 4. There was a sound engineer in attendance, who gave a practical and insightful demonstration of the sound recording process. The visual demonstrations from both Tracks and Layers and Manchester Camerata during this project were an invaluable part of the learning and collaborative process. Following the action plan from the previous meeting, several participant co-researchers shared some tangible objects (including a christeiiing gown, personal letters and newspaper exceipts) and an array of personal photographs which were in some way connected to the locality. As a group, the musicians encouraged us to use the instruments (such as bells, a tambourine and a xylophone) to connect the photographs to the present moment. This really helped to engage those who chose not to contribute to verbal discussions and connected us as a group in ways which we describe as an ‘individual collective’. A substantial part of this meeting was spent communicating through music and discovering self-expression. Once the music-making came to a natural end, some of the group talked about the therapeutic effects of this involvement, whereby music therapy in its broadest sense seemed to be a byproduct of the music-making process. It gave the opportunity for all those present to reflect on thoughts not comiected in any way to the project, but that the safe space and relaxed environment facilitated a therapeutic effect.
Action plan: Start to consider sound effects and ways in which objects could depict everyday sounds (all).
After giving a summary of the previous meeting and reflections of the musicmaking process, Tracks and Layers presented the script so far. This was quite an emotional process, given the passing of several members of the group over recent times. We used some of these emotions to harness our music-making skills. Given the tone of the meeting at that point, the musicians skilfiilly and sensitively shifted the focus towards creating sounds. Using sections of the script, we were encouraged to draw our imaginations (whilst not depending on the ability to recall) to what the narrative in the story would sound like. Interestingly, the group was initially hesitant, with wavering self-confidence and shared vision both interwoven. This was in stark comparison to the previous meeting and yet here, participant co-researchers were questioning whether what they were doing was ‘right’. We subsequently spent some time forging an ethos of ‘we are all in it together’, a discussion which was needed during that specific time and place. In response to these changes in musical connectivity, the focus shifted again towards our immediate physical environment.
With the emphasis on sound effects (in this instance, creating sounds to mirror everyday activities), we explored objects within the physical space around us. One participant co-researcher went out into the garden and brought in some leaves that he then used to mimic walking in the snow. This encouraged another member to use descriptive words to desciibe the sound (crunch, thud, squelch), which, in turn, started discussions around other sounds, such as the donkey stone (a stone used to clear the front doorstep). At that point, it became clear that historical context was critical in determining whether individuals felt connected or disengaged with the activity.
There was no action plan for this meeting.
Given the tone of the previous meeting, we spent some time revisiting the vision of the animation as well as the expectations of the group. We all agreed that the previous meeting was a reflection of circumstances external to the project, but the impact it had on the meeting was quite profound. Whilst we all remained committed to the project, we also recognised the need for time to process and digest external situations during meeting time. This was not an issue that we had previously encountered as a group. We considered our own positions as participant co-researchers and the integral suppoit network embedded within this role. Whilst this was quite a turning point in our endeavour, this was also a conversation that needed to be initiated and worked through collectively by the group. Tracks and Layers and Beena then joined the group to present an update on the animation, which had moved from script to visual depiction (see Photograph 10.2). There was a real sense of excitement and reinvigorated energy amongst the group. Feedback was positive. The skills of both Tracks and Layers and Beena ensured that participant co-researchers remained the drivers and controllers of the animation process, whilst also leading the decision-making process.
Alongside our Manchester Camerata colleagues, we used this energy to start initiating a ‘soundtrack’, which brought us back to the musical connectivity we experienced and shared in meeting 4. This soundtrack would also be used to bring the words 1 alive', as described by a participant co-researcher. We spent time starting to record the sound effects. Whilst we had access to many different musical
Photograph 10.2 Animation in progress.
instruments, many of the sound effects were created by using everyday objects. The next meeting would introduce the group to a musical director who would support us in producing the animation soundtrack.
There was no action plan for this meeting.
Following an overview of the last meeting, Tracks and Layers presented an update on the final animation, which was near completion. There were no required changes from participant co-researchers, which was positive in terms of the group visions being met. In addition to the storylines of individual participant co-researchers, Tracks and Layers suggested an overall narration by a member of the group, an idea which was supported by the group. A member of the group (Peter) agreed to take on this role, working outside of the meeting with Tracks and Layers, Beena and supported by Cathy.
The group was then introduced to a musical director from Manchester Camerata who talked us through the process, listening to the ideas of the group and as a collective we determined how best we go forward. From the outset, the musical director was able to tune into individuals’ confidences, quickly identifying those who felt comfortable enough to go ‘solo’, those who preferred to work as a group and those who enjoyed their own self-defined ‘observer role’ dining this process. We then had the opportunity to record some music and then listen back with added sound effects (such as reverberation and harmonic dissonance). Whilst this extended our audio options, the musical director quickly recognised that it also had the potential to become quite overwhelming in terms of group decision making. As a collective, we agreed that given the skills of the musical director, we would be guided by such expertise.
Action plan: Record the narration.
Following a summary of our previous meeting, Beena announced that the recording of the narration was complete and would be presented as part of the complete animation at the next meeting. Peter (narrator; and see Photograph 10.3) shared his experiences of the recording process with the group.
Photograph 10.3 Narration in action - Peter.
We then continued in our musical endeavours. We had access to the silent animation (visual only) to support us in further developing our soundtrack. This also gave us the opportunity to decide at which point sound effects would be needed (such as a bell sound when the shop door opened). Musical confidence had grown quite extensively over recent meetings and the initiation of different sounds and rhythms had shifted from Manchester Camerata musicians to participant co-researchers. This was also identified by members of the group themselves. Confidence also extended to learning new skills, which was part of the vision for the project, but not always considered achievable by participant co-researchers. The remainder of the meeting was spent producing and recording music for the soundtrack. Some members reported that they surprised themselves in ‘performing’ in front of others. This re-emphasised the need for a safe space and supportive environment.
Following the last meeting’s summary, Tracks and Layers presented the animation with Peter’s previously recorded narration. Participant co-researchers were really quite overwhelmed with the output, which encapsulated a collective biographical story, whilst also illustrating the extent to how changes in the physical environment had impacted upon the lives of each individual. All members were affected to some degree by the process of regeneration, notably by the fragmentation of neighbourhoods and communities. We also had the opportunity to listen back to the recordings made during the previous session, making refinements or re-record- ing certain sovrnds or sections where the gr oup felt it was not quite as they envisaged. This was our final opportunity to contribute to the soundtrack and sound effects, which would become embedded within the animation the following week. The final five minutes of the session involved everyone in the group sat around a large round table playing an instrument and creating what we now refer to as ‘the sound of Open Doors’. This was an incredibly powerful and moving experience where we played musical conversations as a single collective. This excerpt was used during the credits at the end of the animation. As a group, we decided that we would spend our final meeting as a private viewing of the animation.
There was a great deal of excitement to watch the final animation, which was the accumulation of years of work (the animation was based on footage collected during the initial project, see Photograph 10.4). It gave us the opportunity for a great deal of reflection, which many of us contemplated during the viewing. It was an incredibly emotional experience. Post-showing, we spent time sharing these emotions and supporting each other, taking time to reflect on the process and the outcome. We also considered our next steps. The group decided that they wanted a public launch to share with family and friends and a venue was agreed.
Photograph 10.4 Animation still.
‘Stories from a Very Different Salford’ was launched at The Lowry, which is based in Salford (Greater Manchester, UK). Over 80 people attended the event, including participant co-researchers, family, friends, local council members and academics. The event stalled with a short presentation by Caroline, which pictori- ally shared the journey of the project. It also celebrated the contributions made by all participant co-researchers and to those who had passed away during the making of the films and animation. After the showing of the animation, all participant co-researchers who had contributed were invited to stand up for a round of applause, which was a very fitting way to end the event and the project - with all participant co-researchers (with Caroline and Cathy stepping back) taking centre stage.
Issues of reflexivity
Ongoing reflexivity was an integral feature of the role of participant co-researcher. There were several layers of complexity in role reflexivity, some inherent in being a paiticipant (Riach, 2009; Cassell et ah, 2019) and some inherent in being a coresearcher (Takhar-ef a!., 2015). However, here we discuss reflexivity in terms of how the paiticipant and co-researcher roles intersect. Inherent within the participant co-researcher role were six interconnected facets (see Figure 10.1).
These interconnected facets were underpinned by a central vision which was defined by the group. This vision was ‘to feel enabled and empowered to develop,
Figure 10.1 Participant co-researcher roles.
influence and facilitate our own research’ which became embedded within the group’s outward identity. Our perimeters for defining the central participant coresearcher role were flamed around those who were driving the research agenda. Interestingly, whilst Caroline and Cathy were considered as participant coresearchers by the group, the roles of Manchester Camerata, Tracks and Layers and Beena’s participation were aligned by the group to sendee provision. Here, the histoidcal context initiated a shift from the role of facilitator in the previous project, towards a participant co-researcher status in the current project. However, the necessity to reassume the facilitator role was warranted at certain points during the project (for example, as described in meeting 5).
Facet transition was expeidenced by all members of the group dining each of the meetings. Facet transition refers to both the transition and interchange between facets, enabling the participant co-researcher to adopt complementary roles within a single context. This process was observed and noted by Caroline, who as well as participant co-researcher (and occasional facilitator when the situation required), was also recognised by members as a ‘university academic’. This role transparency was essential in building and maintaining trust as well as giving the opportunity to develop academic methodological structures within the dementia care research field.
In addition to transparency, reflexivity also featured as a central tenet to the participant co-researcher role. Reflexivity was experienced in several different guises throughout the project. For example, each meeting began with an overview of the project and a summary of the previous meeting, which had several purposes. As well as serving as an information-giving exercise for those who did not attend the previous meeting or those who needed a gentle reminder of its content, it also served as an opportunity for reflexivity (for example, see meeting 8). We also engaged in reflexive practice at time points between the completion of the animation and the launch. Table 10.1 illustrates a selection of reflexive moments which were experienced by participant co-researchers through a process of self-evaluation.
Table 10.1 Practical Examples of Facets
‘1 can talk in front of a lot of people'.
‘To push myself outside of my comfort zone’.
Example of interchange between: leader and responder
'Knowing when to lead and when to step back and let other’s shine'.
'Taking part in musical conversations’.
‘How talented everyone is’.
'How using music brought people living with dementia out and how they light up’.
’Sharing memories and creating new ones’.
‘Realising we have very similar childhood experiences and visited the same places!’
Example of interchange between: sharer and listener
‘It was very good to sit with friends and listen to each other and share our memories’.
’Enjoying meeting people with so many different talents and stories’.
‘1 learned to listen to other people’.
’How, as a group, we worked together and made some long-lasting friendships’.
‘Working together as a team and seeing the team bonding together’.
Table 10.1 exemplifies how paxticipant co-researchers’ reflections aligned to the facets as illustrated in Figure 10.1. We can also see how these reflections also typify the interchange between facets, such as leader/responder and sharer/lis- tener. The ‘Leader’ facet, in particular, demonstrated a development of personal skills such as confidence which applied reflexivity through a voyage of personal discovery. The role of supporter identified unanticipated outcomes such as friendship and coimectedness.
Making the transition from reflexivity on an individual level to a collective expeiience, a poignant group reflection centred around the topic of ‘dementia’. Whilst dementia (either from the perspective of the lived experience or caring for someone) was underlying in bringing the group together, the project was not defined by dementia as either a clinical diagnosis or as a (society-appointed) label. In fact, dementia did not feature in any part of the animation other than the groups’ self-description of the Open Doors research group which featured in the credits at the end of the animation. This is not to say that dementia was not acknowledged (for example, see meeting 5), but it predominantly functioned as a support and motivational mechanism.
Ending a participatory research project and more specifically, ending a group, is a hugely neglected area of discussion. In paiticular, very few participatory studies have described the challenges and facilitators to concluding a participatory study. Here we share some of the difficulties and catalysts in drawing a participator}' research group to a close.
Given the five-year duration of the study and the nature of the project, there was a heightened potential that some participant co-researchers would: withdraw from the research group; experience a decline in physical, mental or cognitive health whereby the individual felt that involvement in the group was no longer meaningful to him/her; pass away. The group in its original composition experienced all instances. One of the most difficult challenges was that of members passing away, particularly when the surviving spouse continued his/her involvement in the project. This was challenging in terms of knowing how best to support the individual who had developed an emotional connectedness to the project, especially when the voice of the individual who had passed away was audible in the animation or visible in the films in the previous project. A different kind of emotional connectedness was experienced by other members of the group in terms of their own historical and biographical connectivity. Regardless of the basis of individuals’ emotional connectivity, creating a safe space for the group to share and create self-expression was essential in developing and improving our own internal support mechanisms.
Returning to our accordance of transparency, we were very clear from the start that tlie group would be time-limited to the duration of the wider ESRC/NIHR Neighbourhoods and Dementia Study (see acknowledgement at the end of this chapter). This gave us a five-year structure to the group and enabled us to manage each other’s expectations of then involvement in file project during that time. Furthermore, as described at the start of this chapter, the Open Doors research group was part of file wider Open Doors Dementia Service, which was a continuous presence and that continued beyond the duration of the project. Whilst funding dictated file ending of the project and group, we all felt that given file namre of the project, we would have been unable to have continued in its current structure, for reasons previously described.
In preparing to conclude the group, we consulted a clinical psychologist (who was affiliated with the wider ESRC/NIHR Neighbourhoods and Dementia Study) whose role was to support the well-being of staff and participant co-researchers across all of the work programmes in the study. We took guidance and decided to proceed with the remainder of the meetings with both Caroline and Beena withdrawing from the group. This enabled the transition from research group back to an Open Doors group (as facilitated by Cathy) which would be integrated back into the wider Open Doors service.
After completion of the animation (meeting 12), the group (without Caroline and Beena) met a further three times - prior to the launch - to draw on further reflections and develop a journey book. The book was designed by the group as a personal memento of their involvement in the project and included photographs taken at the meetings during both projects across the five years. Within the book, participant co-researchers also shared their own private thoughts, which we all felt were too personal to share in the public domain. Nevertheless, this was a fitting tribute and a lasting legacy to all participant co-researchers involved in the Open Doors research group.
Key learning points from the method used
- • Participant co-research, and its inherent six facets, has the opportunity to play a key role in advancing our understanding and development of participatory case research.
- • Transparency and reflexivity are key concepts in the participant co-research agenda to facilitate trust, mutual support and shared decision making.
- • Longer-term participatory' case research projects require a well-designed and implemented withdrawal strategy and end of project plan.
Three key references
Sherratt, C., Soteriou, T. and Evans, S. (2007). Ethical issues in social research involving people with dementia. Dementia: The International Journal of Social Research and Practice, 6(4): 463-479.
Swarbrick, C., Open Doors, Scottish Dementia Working Group, EDUCATE, Davis, K. and ICeady, J. (2019). Visioning change: Co-producing a model of involvement and engagement in research. Dementia: The International Journal of Social Research and Practice, 18(7-8): 3165-3172.
Takhar-Laila, A. and Chitakunyeb, P. (2015). Reflexive introspection: Methodological insights from four ethnographic studies. Journal of Business Research, 68(11): 2383-2394.
A recommended future reading list
Riach, K. (2009). Exploring participant-centred reflexivity in the research interview. Sociology, 43(2): 356-370.
Swarbrick, S., Open Doors Dementia Service, Khetani, B., Riley, C. and ICeady, J. (2020). Reflections on the ethics of co-research alongside people living with dementia. Sage Research Methods Cases; Medicine and Health, https://dx.doi. orgT 0.4135/9781529709209
This project was funded jointly by the Economic and Social Research Council (ESRC) and the National Institute for Health Research (NIHR). ESRC is part of UR Research and Innovation. The views expressed are those of the author(s) and not necessarily those of the ESRC, UKRI, NHS, the NIHR or the Department of Health and Social Care. This work forms part of the ESRC NIHR Neighbourhoods and Dementia mixed methods study (https://sites.manchester.ac.iikneighbourhoods-and-dexnentia/] [ES/L001772/1). This project relates to Work Programme 1.
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Riach, K. (2009). Exploring participant-centred reflexivity in the research interview. Sociology’, 43(2): 356-370.
Sherratt, C., Soteriou, T. and Evans, S. (2007). Ethical issues in social research involving people with dementia. Dementia: The International Journal of Social Research and Practice, 6(4): 463-479.
Swarbrick, C. and Open Doors (2018). Developing the co-researcher involvement and engagement in dementia model (COINED) a co-operative inquiry. In ICeady, J., Hyden L.-C., Johnson, A. and Swarbrick, C. (eds.), Social research methods in dementia studies: Inclusion and innovation (pp. 8-19). Oxon: Routledge.
Swarbrick, S., Open Doors Dementia Service, Khetani, B., Riley, C. and Keady, J. (2020). Reflections on the ethics of co-research alongside people living with dementia. Sage Research Methods Cases: Medicine and Health, https://dx.doi. org/10.4135/9781529709209
Swarbrick, C., Open Doors, Scottish Dementia Working Group, EDUCATE, Davis, K. and Keady, J. (2019). Visioning change: Co-producing a model of involvement and engagement in research. Dementia: The International Journal of Social Research and Practice, 18(7-8): 3165-3172.
Takhar-Laila, A. and Chitakunyeb, P. (2015). Reflexive introspection: Methodological insights from four ethnographic studies. Journal of Business Research, 68(11): 2383-2394.
Wittenberg, R., Hu, B., Barraza-Araiza L. and Rehill, A. (2019). Projections of older people with dementia and costs of dementia care in the United Kingdom, 2019-2040. CPEC Working Paper 5. London School of Economics and Political Science, London.