Drawing it together
Conclusion: Reflections and directions in participatory case study work
Conclusion
Reflections and directions in participatory case study work
John Keady and Sion Williams
In the Introduction to the book, we shared the start of our academic journey that commenced with enrolment in September 1990 (John) and September 1991 (Sion) on the new (at the time) two-year part-time postgraduate Diploma in Advanced Community Studies (Gerontology) course at the University College of North Wales in Bangor, North Wales, under the course directorship of Mike Nolan. We qualified that statement with the insight into how our respective nursing backgrounds in the care of people living with dementia of all ages (John) and older people (Sion) helped to shape and frame our applied learning and approach to research methodology and methods. Our shared academic journey then continued as part-time PhD students in the 1990s in areas related to ageing studies and our respective clinical nursing practice. However, this began to make visible some of our inner conflicts about the absence of the ‘voice’ of those with lived experience in the research work and who seemed to have had their experiences re-framed thematically and represented by others in the literature (for a notable exception see Heron, 1996).
After we had both completed our PhDs by the early 2000s and settled into the roles of Lecturers in Nursing at Bangor University, it was perhaps no surprise that we initially sought to align our interest in participatory case study work to frontline gerontological nurses practising in the NHS in North Wales, and in the areas where we both had clinical experience and exposure. Moreover, in looking back over the format and stmcmre of the book, it was quite refreshing to be reminded about how intuitively participatory' case study work appealed to front-line NHS nursing staff involved in a range of specialist ‘older person’ roles. For instance, our first three part-time higher degree research students were, in order of registration, John Hughes-Roberts (early diagnosis of dementia; and see Chapter 6), Josie Wray (stroke survivorship; and see Chapter 5) and Sally Roberts (Parkinson’s liaison; and see Chapter 8). All three of our first higher degree students held senior/specialist NHS roles across North Wales and had daily contact with then- respective client groups.
It was this front-line association between nurse and client that explained why the work of the nurse academics Jan Reed and Sue Procter and their textbook ‘Practitioner Research in Health Care: The Inside Story’ (Reed and Procter,
1995a) was so influential to us at the start, as it provided a theoretical rationale to tie participatory case study work to a sample drawn directly from John H-R’s, Josie’s and Sally’s everyday caseloads. As Reed and Procter (1995b) advised, the strength of practitioner research resided in the ‘integration of research with practice’ (p.28) and for a genuine ‘inside perspective’ to emerge, the authors acknowledged that practitioner access to a sample would be limited but deep. That was certainly the case for John H-R, Josie and Sally and became a signature of the programme that we were beginning to develop. Indeed, without the clinician’s relative ease of access to a representative sample, and a theoretical justification for the conduct of practitioner-research that we could readily explain to senior NHS managers, including an assurance that John H-R, Josie and Sally would remain at work for the majoiity of their study and contact time, our whole research programme may never have happened at all. This front-line and practical aspect of conducting practitioner research also helped to keep the costs of doing the research down to a minimum. Moreover, Reed and Procter (1995a) also indicated that the impacts of doing practitioner research were most keenly felt in the clinical and healthcare arena. Combined, these became strong arguments for gaining NHS management approval for the three specialist nurses to initially register for their higher degrees by research with the School of Nursing at Bangor University, and from there, on to us both.
To develop the above points a little more, and as shared in the book, the first MPhil student that we со-supervised together at the School of Nursing and took into the programme, John H-R, is an example of the connection between a highly experienced and respected mental health nurse working in a memory clinic in North Wales, the operational benefits of practitioner research and the co-produc- tion values and opportunities presented by participatory case study work where the design is longitudinal, small-scale, boundaried and creative. For John H-R, teasing out the meaning of what it was like to live with an early diagnosis of dementia and to develop that understanding from the person’s perspective to coproduce research findings was, at one level, instinctive and second nature. This was because these research actions broadly mirrored those of his everyday clinical practice; for example, for John H-R, everyday practice was usually conducted with people with an early diagnosis of dementia, took place on an individual/ couple/family basis and at the person’s own home, built on establishing a close working relationship over time and at the pace of those with the early diagnosis, involved in discerning what understanding the person living with dementia hirn- or herself had about their lived experience, having regular clinical supervision and documenting observations so that an appropriate and agreed plan of care could be implemented and evaluated.
In many ways, undertaking participatory case study work was not a dissimilar experience and it was the well-rehearsed and practised core clinical values and skills that John H-R brought to his research role that enabled Sarah to create the series of ‘see-saw’ diagrams that explained her personal theory and adjustment to the onset of Alzheimer's disease (see Chapter 6). However, whilst these were important and significant developments, what was only briefly mentioned in Chapter 6 was that the personal theory outlined by Sarah actually changed the clinical practice of John H-R’s entire memory clinic team and gave it the impetus to implement a more person-centred service built around Sarah’s lived experience. This included undertaking more memory-based assessments at home rather than at the memory clinic and becoming more acutely attuned to the narrative and discourses that people with an early diagnosis used to describe their experiences of living with dementia and transitioning into its onset. We wrote about the circumstances surrounding these particular events in more detail at the time (see Keady el ah, 2005) with emancipatory practice development used as the methodological vehicle to drive forward the change process and fuel its reporting. Accordingly, we would contend that the emancipatory orientation of participatory case study work can also challenge the hegemony of research and power structures in practice and has the potential to contribute towards social and organisational change.
As time went on, and our own experiences and world-view grew, we opened- up participatory case study work to others without a purely gerontological nursing background and we went on to develop designs with those from, for example, the public health and social care sectors, social science, psychology, speech and language therapy, the creative industry and, as seen in Chapter 11, with a member of the clergy. However, what was most pleasing to see in this opening-up of participatory case study work was that all those we have worked alongside have continued to intuitively grasp the nature of the programme of work atrd have embraced a desire to do research differently. For all our higher degree research students especially, the stories and co-produced outputs displayed during this book (and others that are not) are a testimony to a basic trust placed in its as academic supervisors with this faith extending to the organisations that supported each of their employees to complete their studies. None of us are islands when undertaking and performing research or in seeking funding for its conduct.
Our interest in using and adapting participatory case study work has also enabled us to embark upon a programme of work that has relied on the imiate personal creativity of those with lived experience as both the touchstones and evaluative outputs of our adapted approach. The generation of a personal theory, a collective theory (as necessary) and, separately, the products of social action/leaming attached to participatory case study work conducted with groups, as illustrated in Parts 1, 2 and 3 of this book, have highlighted the diversity, transparency and utility of the co-production and co-design processes. These contributions have also supported the underlying tenets of participatory case study work which we have come to see as embracing: social action and social justice; egalitarianism; a reduced distance between ‘researcher’ and ‘participant’; authentic knowledge as a product of participant involvement; a demonstrable sensitivity to personal context, culmre and biography; the forging a shared research language; encouraging the involvement of participants throughout the research process; and producing accessible accounts of lived experience that do not simply rely on the written word.
With these descriptors in mind, we will now provide a brief commentary on some of the main themes and messages that have arisen in our ‘adapting, doing and supervising’ of participatory case study work over the years and in the studies repoxted on in this book, based on a blended approach. We have presented this staging under four broad headings: i) engaging and representing the authentic voice; ii) democratising the research space; iii) developing methodological insights; and iv) surfacing future challenges and opportunities. We will now address each of these points in turn.
Engaging and representing the authentic voice
As we shared in Chapter 1 with the ‘vision and values’ and the ‘stepping model’ outlines, the processes needed to reach the authentic voice of those with lived experience within a participatory case study design is not simple and straightforward. However, the intrinsic case can be a powerful medium for change. In the dementia studies literature, for example, it is often forgotten that the development of Tom Kitwood’s highly influential social theory on personhood was constructed from an individual case history, or psychobiography as it was named in the case report (see Kitwood, 1990). This psychobiography was conducted by Kitwood with a person called ‘Rose’ whose straggle to assert her personality through the mask of her confusion triggered Kitwood’s thoughts about the need to reconceptualise the experience of dementia. After attempting to agree a meaning to Rose’s actions and behaviours with colleagues at the Bradford Dementia Group (as it was named at the time), the team constructed a multi-dimensional theory which outlined social and subjective influences as experienced by Rose (see Kitwood, 1990, for a fuller discussion, and later see Kitwood, 1997). Whilst the emerging theoiy focused predominantly on the more advanced stages of dementia in residential care, mirroring Rose’s personal situation at the time, it nevertheless placed the person living with dementia at the heart of the process and attention. The ensuing development of person-centred care and personhood has had national and international impact (Kitwood and Brooker, 2019) and centre stage positioning in national dementia strategies from around the world (Alzheimer’s Disease International, 2011). However, the begitmings of person-centred care and personhood should not be forgotten, and it was very much based on capturing and re-conceptualising the authentic voice and lived experience of one person, Rose.
In a similar vein, the co-produced personal theories in Part 1 of this book have a similar intuitive appeal, although we do not presume that they will have a similar impact to that of Rose’s described situation. However, to take one example from our work, in Chapter 5, Malcolm’s personal theory and contribution of a ‘stroke circle’ to describe his lived experience of stroke survivorship resonated with others taking part in the study as it neatly summarised the boundaries that were placed around the person/couple at the start of this life-changing occurrence. The stroke circle and boundaries remained over the duration of the stroke event, it is just that the circle expanded and contracted given the life circumstances faced at the time. Similarly, Malcolm’s articulation about his fear about suffering a second stroke was a consistent feature over the duration of the longitudinal engagement with Josie, and it held in its articulation a practice dimension that moved outside of the domains of a traditional research encounter. This was also seen in Chapter 8 in the pencil sketch outline of Douglas when in his ‘who is centre stage in my life’ diagram he positioned his dog, Lily, as closest to him at the centre of the page (which represented his closet relationship), hi the same centre stage diagram, Douglas positioned his wife Val a little way away from him and distant. The implicit and explicit messages here are quite clear in that it would seem important to bring Val closer to the centre of the page (stage), and therefore, the centre of a life with her husband Douglas. Whilst living with Parkinson’s is a challenge and acceptance of life events a critical turning point, not only for the person with lived experience but also for family members, its surfacing within a practitioner-research context also enabled Sally to reach out and help. Whilst there are many ways of undertaking participatory case study work, it is important not to lose sight of what is most meaningful in people’s lives and what can be done to enhance personal well-being and quality of life, and what our own personal responsibilities are in making this happen.
The varied social research methods deployed in participatory case study work are therefore likely to advance as many challenges as they do opportunities. This raises an impoxtant dimension to participatory case study work and in reaching the authentic voice of the person/persons who are taking part in the study and that is the voice, in whatever way it is articulated or represented, may not always tell you what it is you were expecting to hear. Accordingly, for academic co-researchers taking paxt in participatory case study work, there is a need to stay flexible, vigilant and attuned to what it is that is being shared and perhaps more importantly of all, why it is being shared. Similarly, participant co-researchers will also draw upon their life biographies to reach aixd represent then own lived experience in a way that is nxeaningful to them. This can lead to some very creative ways of self- expression, some of which we have included in this book, such as the cartoons of Vic in Chapter 8 and the annotated neighbourhood nxap produced by Diaixe and Dave as displayed in Chapter 7. This personal creative process is termed Tittle-c’ creativity in the literature (see, for example, Richards, 2010; Silvia el al., 2014) and it is an outlet that, in our experience and opinion, goes straight to the heart of participatory case study work and to reaching and representing the person’s authentic voice.
Democratising the research space
One of the most inxportant features of participatory case study work is that it attempts to level the playing field and the distaixce between the researcher and those being researched. In our earlier work, and as seen in Chapters 5 and 6, we promoted the idea of ‘exchanging stories’ so that the participant co-researchers would first get to know the academic co-researchers by asking them questions based on Gubrium’s (1993) life story tool, the same tool that the academic co- researcher would later use with the participant co-researcher(s) to tease out their biography and chaptered life story. In many ways, the ideas that informed the approach to ‘exchanging stories’ and getting to know one another first before approaching any research work together, still hold value, meaning and importance today. Whilst there are no firm rules in participatory case study work about how to establish a trusting relationship between those taking part, there are, of course, many other ways of building a relationship that does not have to take the structured approach of ‘exchanging stories’. For instance, simply spending time together and the academic co-researcher being open to being asked questions by the participant co-researcher(s) about their life and points of connection is equally relevant. The most important thing to remember is that first connecting on a human-to-human level is a foundational step to reaching the authentic voice of the participant coresearcher and to get there, all communication approaches should be left open in order to amplify the relationship as it continues and develops over time.
In undertaking a participatory case study with a group, the conditions that are created by the shared identity naturally lend themselves to an overall feeling of ‘being in this together’ and to a sense of piide in the group’s activities and social action/leaming/product. This experience was vividly captured in Chapter 10 of this book when the Open Doors research group (a group of people living with dementia and participant co-researchers), Cathy Riley (the Open Doors research group facilitator) and Caroline Swarbrick (the academic co-researcher) painstakingly and thoroughly spelt out the week-by-week process in which the group’s meetings about ageing-in-place in Salford led to social action and the production of an animation that was scripted and voiced by the group. The animation remains available on YouTube (www.youtube.com/watch?v=9RclWkkTH-4; accessed 15 April 2020) and acts as a legacy to the group’s time together and their contribution to public awareness and education about the changing face of their neighbourhood. Whilst there are several points that could be made about such a contribution, to our way of thinking this is where the ‘vision and values’ and ‘stepping model’ outlined in Chapter 1 is at its most prominent in our blended approach to participatory case study work. For example, the academic co-researcher (Caroline in this case) had to know when to step in and to drive the group’s actions forward and then step aside once the group started to take over and own the product of their work together, whilst being vigilant to the need to step in once again should that become necessary. These actions were pivotal to the groups’ in the moment functioning as well as keeping an eye on an end-point. How visible these stepping in and stepping aside processes are to the participant co-researchers will largely depend upon context and group working. Again, there are no fixed rules here and the need will be driven by situational context and processes.
From our time of being involved in undertaking and supervising participator)' case study work, the democratisation of the research space has been an underpinning value of the approach, but it is a negotiated process whereby the academic co-researcher must be prepared to ‘step in’ to keep the group (or the individual/ family and so on) on track and focused on the end-point. A destination that enables all concerned to ‘step out’ of the participatory case study work. This is not an easy judgement call to make and it will take time and trial and error in order to get the balance right. However, adding reflexivity into the mix of participatory case study methods and approaches can only add to the qualitative rigour and transparency of the co-produced research trail.
Developing methodological insights
Over recent years, the popularity of qualitative research in the fields of health and social sciences has sharpened the focus on questions around the meaning of rigorous, in-depth and innovative research design and analysis. In addition, qualitative research in health and social sciences has, to date, had a rather static conception of the range of approaches and methods available for analysis and reporting, often unresponsive to the dynamic nature of social interaction and the creative contribution of those whose experience is being researched. With participatory case study work, the tables are turned and the creativity and the social-relational context of doing research are the central tenets of the movement. In our experience, and as seen throughout the book, the participatory aspect of participatory case study work has led to innovations and insights in the co-production and co-generation of personal and collective theoiies. It has also enabled the use of empowering social research methods to be placed in the hands of participant co-researchers, be that through the use of ‘craft-felt’ to generate a range of centre stage diagrams (Chapter 8) to the use of personal cameras to illuminate life story work and representations of lived experience (Chapters 2 and 4), including the use of visual images on the neighbourhood maps made by Diane and Dave (Chapter 7) and to illuminate group interaction during the making of an animation (Chapter 10).
However, participatory case study work is open to interpretation and to development beyond what we have shared in this book. Indeed, developing methodological insights through continued innovation and experimentation is to be encouraged and is something that we would wholeheartedly support. For example, the exponential rise and use of digital and online technologies over the last decade shows no signs of slowing down and it will undoubtedly lead to more participatory and user-led ways of doing research that is under the creative control and ownership of participant co-researchers. Integrating these new and evolving technologies into participatory' case study work is a necessary future direction and one we will briefly return to this again in the next section.
In Parts 1, 2 and 3 of the book, the reflections of all academic co-researchers have been positive to the use of participatory case study work and that in many cases, the power of the personal theories have found a resonance and a meaning outside of the relationship in which it was created. Placing the authentic voice at the centre of methodological innovation, such as centre stage diagramming and its relationship to positioning theory' and positioning analysis (see Chapters 5,
6 and 8), moves case study research forward and generates theory and action from lived experience. It is this duality of role and purpose that gives participatory case study work its power, own voice and place amongst the range of case study methodologies and approaches. However, we should not stand still. In our experience and thinking, using and adapting creative social research methods to empower the person with lived experience to co-produce their own personal theory' and representation of lived experience presents evidence in a novel and innovative way. It may not have the statistical power that drives forward the findings of a randomised control trial for example, but it does have the power of connecting the person with lived experience to themselves and their self-beliefs, values and creativity. A typical illustration of this purpose and power is ‘the man on the cross’ photograph in Chapter 3. Once the photograph is seen and the story' and context of its sharing are known, it is a very difficult image to forget. Arguably, representativeness and social action in methodological development needs to be re-thought to accommodate lived experience constructed as personal theory or group social action and learning.
Surfacing future challenges and opportunities
One of the challenges that all academic co-researchers face in undertaking participatory case study work is obtaining ethical approval to simply report the personal, collective or group work as research. Whilst ethical committees have an important role in safeguarding participants in taking part in research, the lines become blurred when the participants become the researcher(s). This challenge is beginning to be acknowledged in the literature (Clarke et at., 2019; Webb, et al., 2020) as it is becoming increasingly untenable for participant co-researchers who express an opinion otherwise to have their authentic voice and lived experienced cloaked by a pseudonym in the reported research. In many ways, the diversity of co-participant researcher experiences presented over the course of this book (studies approved between 2003 and 2017) is a commentary on the lack of clarity in the national ethical approval process. As an illustration of this conflicting position, in Chapter 4 it was permissible for the participant co-researcher to be represented in a photograph without facial blurring whilst in Chapter 7, the protocol stated that participant co-researchers had to have their faces blurred. Interestingly, both these studies were united in the diagnostic condition (an early diagnosis of dementia) and having to assign pseudonyms to the participant co-researchers. Recently, there has been an awareness of the importance of people with lived experience taking part in research and there is a general acceptance of the maxim ‘nothing about us without us’. However, in our experience, there is still some distance to go to make this clarion call for involvement in research a reality. Ideally, a more relaxed and egalitarian approach is required to view knowledge generation as a partnership between academic and participant co-researchers, rather than an act conducted solely by an academic him- or herself however good the member checking may be in the research process.
As a point of social history, we are writing this concluding chapter at the time of a global pandemic caused by the coronavims (COVID-19) outbreak (early Apiil 2020) and we are basically locked-down in our respective homes with limited opportunities to go outside and meet with other people, including with members of our own families. It is a salient reminder about the fragility of human life. However, whilst the present circumstances could be seen as the antithesis of what participatory case study work is all about, and what this book is all about, we would suggest that it is important to stay flexible and to continue to see opportunities in doing research differently. In the future conduct of participatory case study work, access to online platforms and chatrooms, for example, are opportunities for relationships to be built in a different way with social media providing an outlet for communication/data/images to be shared instantly. There are many ways to be an academic co-researcher and a participant co-researcher in the digital age. We just need some further examples to be published and made available in the years and times to come.
Finally, we would like to think of this book not as an end-point but as a new begimring. Conducting participatory case study work holds endless possibilities and, in many ways, we have only scratched the surface of what is imaginable and what can be achieved through genuine collaboration. Whilst gerontology and ageing studies has been ‘our thing’ over the years, we are mindful that it is not for everyone and many other contact groups of people exist and could benefit from the approach. As we have seen and shared in this book, the rewards of undertaking the approach are great and the creativity of the human spirit is to celebrated, applauded and communicated. And on that note, we would like to thank everyone who has worked with us over the years and has helped to forge a new identity for participatory case study work and in liberating case study from the shackles of its past. Going forward, we all have the possibility and potential to be positioned as ‘a case’ and in such circumstances, having the opportunity to share our authentic voice really will matter. We just hope that it will still matter to the research community as a whole.
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