John Keady and Sion Williams
This book has been a long time in the making. For both John and Sion, its stalling point goes back to the autumn of 1990 and the first intake on a new two-year part-time postgraduate Diploma in Advanced Community Studies (Gerontology) course that was on offer at the University College of North Wales, or Bangor University as it is known today. Whilst we did not know one another in the autumn of 1990, our coming together was brought about through a process of serendipity as, one year apart, we both registered on the new postgraduate diploma course: John on the first intake, Sion the following year. Indeed, this initial foray in academic life set in motion a chain of events that led to the production of this book and to a personal friendship that has lasted nearly 30 years and is still going strong.
However, if you could indulge us a little, we would like to take you back into the autumn of 1990: the first week in September 1990 to be precise. A time when interview data was captured on C90 cassette tapes, Margaret Thatcher was the United Kingdom (UK) Prime Minister and typed acetates shown on overhead projectors was the epitome of professional teaching practice. It was into this arena that the new part-time postgraduate diploma course was launched and organised around a mixture of day release and evening classes. The course was run through the Centre for Applied Community Studies at the University College of North Wales, a teaching environment that was situated on the ninth floor of one of the few tower blocks in the city of Bangor, and funded for a fixed-term of five years under a Welsh Office scheme called ‘The Staying at Home Project’. The director of the postgraduate diploma course was the soon to be Dr, and later Professor, and now retired with an Emeritus status at Sheffield University, Mike Nolan. In 1990, however, Mike was at the start of forging an international reputation in ageing, nursing and gerontological research, a field of study that was significantly underrepresented in the literature and held a fairly lowly status in the eyes of the caring professions. How times have changed...
The postgraduate diploma course was free to attend and open to clinicians practising in the care of older people in Wales. Registration for the postgraduate diploma course could either be through a first degree or via relevant experience in the care of older people coupled to a professional qualification. John was accepted onto the postgraduate diploma course on the basis of his Registered Mental Nurse (RMN) qualification and clinical experience as a practising community psychiatric nurse in dementia care in South Gwynedd. John had previously undertaken mental health nurse training at Warley Hospital (better read as an asylum) in Brentwood, Essex, between February 1983 and July 1986, and had worked with people living with dementia and older people with mental health needs since qualifying. John’s move from Essex to Gwynedd in the autumn of
1986 was as a result of his marriage earlier that year to Claire who was Welshspeaking and from the area.
In contrast, at the time of his entry onto the postgraduate diploma course, Sion was working as a staff nurse on an acute care of the elderly ward (as it was described at the time) at Ysbyty Gwynedd (English translation: Gwynedd hospital) in Bangor. Sion had started to train as a Registered General Nurse (RGN) in
1987 at the Gwynedd School of Nursing which was based in Ysbyty Gwynedd at that time. He had also recently completed a BA (Hons) Histoiy degree at the University of Leicester. In the mid to late 1980s, it w'as still a little unusual for student nurses to enter nurse training (of any description) wfith a degree-level qualification. However, Sion’s ambition to enter RGN training in 1987 w'as deep- rooted and resonated with a family biography that included nursing practice and a Welsh-speaking culture that held eating as a key identity marker.
As neither John nor Sion had received a formal university-based education in nursing, our exposure to a university to undertake the postgraduate diploma course in a topic area that was our everyday clinical practice was both a novel and exciting prospect - if a little daunting. Indeed, when we each started the course, it is fair to say that, in meeting Mike Nolan, and despite our professional training, this w'as our first encounter with an academic nurse and with someone who had navigated and negotiated the turbulent waters of postgraduate research training/ funding, PhD registration and supervision and (eventual) PhD completion. For Mike, his PhD studies were centred on frail older people, family carers and respite care (see Nolan and Grant, 1992) underpinned by a strong nursing identity as he held both RGN and RMN qualifications as well as undergraduate and higher degrees. As is probably obvious by now', the world of academia w'as not familiar to either of us in the autumn of 1990, although exposure to the University College of North Wales, and the nature of the course with its emphasis on integrating gerontological research, practice, policy and education, enabled us both to dream a little and to anticipate a different type of future that might, one day, if we were fortunate, include studying for a PhD of our ourn.
And that particular dream did come true for us both. After successful completion of the postgraduate Diploma in Advanced Community Studies (Gerontology), w'e became amongst the first part-time postgraduate research students under the supervision of Mike. In September 1992, whilst still a community psychiatric nurse working in a multi-disciplinary dementia team in south Gwynedd, John registered for a part-time MPliil degree at the University College of North Wales. The MPhil degree registration was later upgraded to a PhD registration in the mid-1990s via special approval of the University of Wales Registiy in Cardiff owing to John not holding a first degree. This dispensation was made because of the number of published peer-reviewed articles related to the ongoing research and data collection/analysis process that John had been involved in since the time of his higher degree registration (see, for example, Keady and Nolan, 1994a,b; 1995a,b,c). In John’s case, the PhD study methodology was classic grounded theory' (Glaser and Strauss, 1967; Glaser, 1978) and the research topic focused on socially constructing the lived experience of dementia first through interviews with family carers of people living with dementia and later with people living with dementia (see Keady, 1999). In September 1993, Sion registered for a part- time MPhil degree (later upgraded to a part-time PhD) that was focused on discharge planning for older people using a constructivist design (Guba and Lincoln, 1994). The area of discharge from hospital was, and remains, a contemporary area of concern across research, policy and practice. Sion’s PhD work built upon the contribution of Qualls and Czirr (1988) and developed into a study that blended fourth-generation evaluation (Guba and Lincoln, 1989) with elements of grounded theory analysis to generate a ‘processing patients’ and ‘processing people’ model of hospital discharge planning (see Williams, 2001).
As can be intimated from our respective PhD journeys, it was in the early years of the 1990s that we first formally met as higher degree research students and struck up a friendship based on mutual work interests, a shared sense of humour and, quite simply, just getting along together. At that time, we started to meet more frequently to exchange photocopies of the literature that we had gathered on our respective topic areas (probably breaking all data protection and governance laws these days), meeting occasionally at one another’s homes to continue discussions and to compare notes on PhD progression and how to meet the demands of research timelines and deadlines. All these years later, we still meet together to do similar things, only this time it is ‘us’ who are the PhD supervisors and the academic expectations are a little different. However, those early years of our MPhil and then PhD registrations eventually led to offers of appointment as Lecturers in Nursing at the newly formed School of Nursing at the University College of North Wales and allowed us to continue with our respective part-time research studies, only this time from within a university base and setting. They are times remembered with great fondness and of being exposed to many new experiences, including the first time:
- • Writing a conference abstract and receiving (by letter of course) the joy of acceptance to present a paper
- • Attending and presenting at an academic conference which, in both our cases, was at the Royal College of Nursing Annual Research Conference in Glasgow in the spring of 1993. We clearly remember sitting opposite Nancy Roper for Sunday breakfast at that conference (the Roper, Logan and Tierney model of nursing was instrumental in our training and everyday work) and, for the first time, being in the presence of academics such as Senga Bond and
Jan Reed and seeing how they approached their work and musing research dissemination
- • Writing a research protocol and preparing for a meeting with an external research ethics panel - and finding out why such meetings and protocols were necessary
- • Receiving MPhil/PhD supervision and being part of a newly formed academic team; for example, the British Association for Services to the Elderly (BASE) Practice Research Unit led by Mike at the University College of North Wales and seeing how such structures came together
- • Photocopying journal axticles in the library of the University College of North Wales - mainly in the evening and after the day’s clinical work had been done. This process led to us becoming acquainted with journals such as ‘The Gerontologist’ and textbooks such as ‘Ageing in Society’: An Introduction to Social Gerontology’ (Bond and Coleman, 1990)
- • Reading the work of authors such as Steven Sabat, Phyllis Braudy ‘Решу’ Harris and Tom Kitwood and realising that our attempts at local research could, perhaps, one day, fit into a wider national and international picture of gerontological and ageing studies
- • Undertaking research interviews in people’s homes and grappling with the language of grounded theoiy, mixed methods qualitative research and the complexities of data analysis
- • Submitting articles to peer-reviewed journals and interacting with the demands of academic presentation and referencing ... and reviewer feedback
- • Juggling the competing demands of helping to raise a young family alongside work, higher research degree supervision deadlines and receiving supervisory feedback on what ‘writing at PhD level’ actually meant
- • Finding out that academic conferences mainly happened at weekends and having to become skilled domestic negotiators
- • Meeting peers who were developing, or who had developed, similar interests in our respective fields, some of whom were to go on to be life-long academic colleagvtes and collaborators and, in many cases, friends
Whilst these personal stories may be of some interest, you may be wondering about our pvupose and motivation in sharing them. Well, it is mainly because we want to openly acknowledge at the outset of this book that we have a shared nursing heritage and practice foundation to our work in older people’s care; for example, John still holds a joint appointment between The University of Manchester and Greater Manchester Mental Health NHS Foundation Trust and has continued his interest in the lives and experiences of people living with dementia of all ages and their support networks from the 1980s to the present day (May 2020).
We also want to openly acknowledge that our entry into academia was perhaps not via a traditional route and that it was driven by three interlinked motivations. First, it was as a by-product of not fully understanding our clinical work with older people and with people living with dementia of all ages and in not knowing how, when and why we were being effective at our jobs. Second, we grappled with where the ‘patient voice’ fitted into the research work that we were undextaking at the time. In clinical practice, the older ‘patients’ with whom we were engaged on a daily basis were seen to have unique and biographical knowledge that we needed to capture in order to be skilled and empathetic practitioners. However, integrating the ‘patient voice’ as a valued partner in knowledge generation in social research and the traditional qualitative methodologies did not seem to have a similar status and emphasis in the mid-1990s. Third, and not to put a too finer point on it, and as already intimated in this Introduction, we were both in the right place (North Wales), in the right clinical area (care of older people), at the right time (staxt of an innovative, but time-limited, university-based part-time postgraduate diploma-level course in gerontology with flexible adnxission criteria) and nxet an academic nurse (Mike Nolan) who could put some theoretical constructs and mentorship behixxd the everyday real-world of our clinical practice. Given the stage of his career, Mike was also looking to build a research programme in gerontological nursing aixd care. It was yet another steppingstone in a pathway of good fortxxne and discovery.
Despite some (inevitable) ups and downs aloxxg the way to our part-time PhD conxpletioxxs, our good fortune continued and oxu shared heritage helped xxs to shape our values aixd define what was important in research practice. For exanxple, for us both, the experience of ‘the one’ is just as important as the experience of ‘the many’, and therefore, case stxxdy work in ageing studies became a natural fit for oxxr postdoctoral research programme and what we wanted to achieve together. However, up to and including the present day, case study research has been donxi- nated by the work of Yin (2009, 2018) and Stake (2000; 2005) aixd participatory case study work has so far been under-utilised and imder-theoxised within the suite of case study approaches. We are not sine why this is as the guiding priix- ciples of participatory case study work centre on social action and social justice, egalitarianism and the generation of authentic knowledge which is sensitive to context, culture and history (Reilly, 2010). Furthermore, participatory case study work positioxxs participants as having expertise in the social world and engages the person as co-researchers with lived experience who are in the thick of it - experiences that mirrored our own clinical practice and values.
We will now outline the shape and structure of the book and draw upon our life-long interests in the field of ageing and gerontological practice to make that happen.
Shape and structure of the book
The book draws together over 15 years’ worth of participatory case study work in which Sion and John as editors have been actively involved through a range of activities that covered undextaking front-line research, mentors to experienced practitioner-researchers and social scientists, and supervisors to MPhil and PhD stxxdents. All contributors to this book are drawn fi onx one of these areas. As such, the book will showcase opportunities for the conduct of participatory case study work from a diverse range of topic areas in the ageing studies field, including chronic obstructive pulmonary disease, stroke survivorship, the lived experience of dementia, rarer fonrrs of dementia and Parkinson’s and, at times, a combination of such different long-term conditions. The breadth of opportunities for engaging in participatory' case study work will be demonstrated as well as the inherent creativity in how participant co-researchers (i.e. those with lived experience) made rrreatring from, and surfaced, their shared, but individual atrd socially related, experiences. For instance, through longitudinal engagement, examples will be provided in the book of participant co-researchers illustrating their lived experience through drawings, cartoons, photographs and diagrams.
A further ambition of the book is to open-up new method directions in the area of applied social and health sciences research with detailed accounts about how participatory' case study work was used to enhance the effectiveness, utility and robustness of qualitative research. The use of a range of participatory case studies (all ethically approved and meeting the necessary UK research governance requirements) on a one-to-one basis (Part 1 of the book), collective theorising (Part 2 of the book) and group context (Part 3 of the book), provides a lens to view how participatory case study work has generated important co-created insights from lived experience positioned as qualitative data. These insights include the use of constructivist grounded theory being informed by participatory' case study design and creative social research methods being introduced by and led by participant co-researchers in order to develop their own personal theory of their own lived experience.
The majority of studies that form the backbone of the book are centred on work that was completed as part of a higher degree (MPhil or PhD), with the exception of Chapter 3 and Chapter 10 that represent discrete studies. In this way, the accounts by practitioner-researchers such as John Hughes-Roberts, Josie Wray and Sally Roberts or postgraduate student researchers such as Pam Roach, centre on how they utilised participatory' case study work to build partnership working with participant co-researchers and develop a shared enterprise. As such the cases reported within the book do not include participant co-researchers as co-authors, other than in Chapter 10. Instead, the focus of the case narratives is on the process and products that emerged from that collaborative act between academic and participant co-researchers and as reflected in the shared personal and collective theories.
The book starts with both editors joining forces to establish the parameters of what constitutes participatory case study work and to map its key features, principles and practices. The opening chapter also presents our adaptations to participatory case study work through the surfacing of the ‘stepping model’ and the vision and values necessaiy to reach the authentic voice of the person with lived experience and enable the persoiTcouple/fannly network to generate their own personal theoiy of that lived experience. Next, Pait 1 of the book is presented under the title of ‘Working one-to-one to develop a personal theoiy’. There are six chapters in Part 1 of the book to reflect the diversity, depth and opportunity that exists in conducting paxticipatory case study work and producing a personal theory of lived experience in whatever language, format or style that was meaningful to the paxticipant co-researcher(s). The first of the ‘working one-to-one’ chapters, Chapter 2, is written by Jackie Kindell, Ray Wilkinson and John and focuses on the case study of Ruby, a woman living with advanced semantic dementia, and her husband Brian. As a highly specialist speech and language therapist in dementia, this chapter showcases Jackie’s evolving relationship with Ruby and Bxian and draws upon conversational analysis, biographical interviewing and video data to demonstrate how the co-created life storybooks from Ruby’s remembered life storyliixes helped to sustain communication between the couple, however momentary. Chapter 3 is written by Sion and John and ultimately presents Graham in his chosen pose as ‘the man on the cross’, a photograph that is shared in the chapter and was taken by his peers at his local gym. This participatory case study was mainly conducted by Sion axxd follows Graham’s experience of living with late- stage chronic obstructive pulmonary disease and the visual metaphor of ‘the man on the cross’, a representation that included Graham’s knowledge of his impending death. The chapter is underpinned by a set of centre stage diagrams that showcase the importance to Graham of his family, local gym and Catholicism. Next, led by Pam Roach, Chapter 4 returns to the topic area of dementia and focuses on the co-constiuction of a family biography with Susan and her nominated family members, namely her husband William, her younger half-brother James and her maternal uncle Andrew. Interestingly, in contrast to Ruby in Chapter 2, as her personal theoxy, Susan aixd her family created a book-like family biography that consisted of photographs, a family tree and an outline of six ‘chapters’ about their life together. The family biography was particularly helpfiil in locating Susan’s identity within her family xxnit, a position the family were keen to preserve for as long as possible. Chapter 5 is focused on stroke survivorship and is led by Josie Wray who, at the time of undertaking the participatory case study work, was a nurse specialist in the stroke services at a local NHS district general hospital in North Wales. The chapter introduces the participatory case study of Malcolm as a stroke survivor and his wife Margaret and the way that longitudinal engagement enabled Malcolm to diagram his lived experience which he saw as existing within a stroke circle. The discovery and naming of a ‘stroke circle’ by Malcolm had resonance and meaning to other stroke survivors and it is presented in this chapter with the couple’s original hand-drawn diagrams. The penultimate chapter in Part 1 is led by John Hughes-Roberts and was the first participatory case study supervised by John and Sion. This work commenced in early 2003 when Joint H-R was in fiill- tirne clinical practice in North Wales as a specialist memory clinic mental health nurse. The participatory case study shared in this chapter draws on a previously published paper (Ready et al., 2007; shared with permission of the publisher) and explores the experiences of Sarah who was diagnosed with Alzheimer’s disease at the memory clinic where John H-R worked. The chapter particularly draws upon Sarah’s creativity in outlining a series of see-saw diagrams that illustrated how her life perpetually went in and out of balance and how achieving a sense of balance was the most important function in her everyday life. The final contribution to Part 1 of the book, Chapter 7, is written by Xia Li, Jolm and Richard Ward, with Xia being the main academic co-researcher. This chapter changes track a little and focuses on a participator}' case study involving a couple, Diane and Dave, with Diane being diagnosed quite early with Alzheimer’s disease when Xia first met her. The couple had lived in the same neighbourhood for a number of years and the chapter outlines the different iterations of a neighbourhood map that located the couple’s home within a connected neighbourhood. As will be shared, the final neighbourhood map illustrating the couple’s personal theoiy was aimotated with photographs taken by Diane and Dave and provides a window into their life together and what has changed and what has remained the same following the diagnosis.
Part 2 of the book is titled ‘Generating a collective theory from a seiies of personal theories’ and comprises of one illustrative chapter written by Sally Roberts, Sion and John. In our application of participatory case study work, Chapter 8 uses the early adjustment to Parkinson’s as an overall case to reveal how four individual and diverse personal theoiy contributions generated by participant co-researchers were turned into one collective theoiy of the early adjustment to Parkinson’s. Here, Sally, acting as the academic co-researcher, was the link between all four participant co-researchers who received and commented upon their collated set of personal theories in order to look for points of connection and commonality between them. These processes turned an individual personal theoiy' into a collective theoiy that was accepted by all the participant co-researchers as representing their shared position in living with the early impact of Parkinson’s. The chapter outlines the steps taken by the academic co-researcher (Sally) in reaching the collective theoiy and presents the collective theoiy itself as the final product of the group’s activities and theorising.
Part 3 of the book is titled ‘Doing participatory case study work with groups’ and, as its name suggests, addresses how participatory case study work can be used to work with groups of people with the group acting as a case. Generating a collective theory is not a possibility in this aspect of participatory case study work and the agreed group theoiy/action/resource at its end-point is the final and agreed product of the research enterprise. Part 3 of the book comprises of three chapters, all drawn from the dementia field, and they have been chosen to select the diversity of experience and outcomes that can be undertaken using the approach. In Chapter 9, Robyn Dowlen and her colleagues ground their participatory case study work within a 15-week Music in Mind group that is conducted by Manchester Camerata. A range of visual and multi-sensory methods are shared to illustrate the power of individual and group creativity and innovation in musicmaking. Next, Chapter 10 shares the week-by-week processes involved in using participatory' case study work to help people living with dementia, represented by the Open Doors research group in this example and as co-authors of the chapter, to co-design and co-produce a biographical place-making animation. This work took place in Salford in the UK and illustrates the delicate balance necessary between the academic and paxticipant co-researchers to reach an output that is owned by the participant co-researchers. The final chapter in Pail 3 of the book, Chapter 11, is written by Bob Friedrich, Bob Woods and Sion and charts the development of a participatory case study that was action orientated to understand how best to generate, and then implement, dementia-friendly churches within the context of generating dementia-friendly communities. This work was conducted in North Wales with different Dioceses and chinches.
Finally, Part 4 of the book, ‘Drawing it together’ is written by John and Sion and presents a conclusion that outlines the challenges and oppoitunities faced by conducting participatory case study work. This is presented in Chapter 12.
As we want the book to act as a guide and to inspire the use of participatory' case study work, each chapter in Parts 1, 2 and 3 follows a similar structure that provides an illustration about:
- • The method that underpins the participatory case study work
- • Examples of how the method, or combination of social research methods, were used in the participatory case study work
- • Insights gained from using participatory case study work
- • Ethical issues encountered in the use of participatory case study work
- • Issues of reflexivity in undertaking participatory case study work
Moreover, each chapter also contains: i) a box with bullet points highlighting learning points from the employed method and how participatory case study work was utilised; ii) three key references; and iii) a recommended future reading list. Whenever possible in this book we will position participants as ‘participant co-researcher(s)’ and refer to the academic as ‘academic co- researcher(s)’ - this has already been written into the preceding overview of the book. This is just to differentiate roles and identities in taking part in the process and it is not meant to denote hierarchy, although there are times, as we will explain in the opening chapter, where the academic co-researcher has stepped in and led in order to make the co-produced research happen in the first place. An obvious example is in completing and submitting the necessary ethical committee documentation to enable the reporting of activities as a research process. To tiy to keep as close as possible to the democratisation of research that underpins the ethics and values of participatory case study work, we will use authors’ first names in each chapter when describing co-research work and its reporting. We will also do the same with participant co-research- ers whilst being mindful that ethical approval restrictions and conditions mean that we will mainly be doing this via assigned pseudonyms. A challenge we will return to in Chapter 12 and the conclusion of the book.
As editors, we have assembled a book that outlines the central tenets of a participatory case study work as we have used and adapted it over the years, steps that have included the longitudinal nature of engagement, the co-creation of methods and analysis and the adoption and use of the terms ‘academic co-researcher’ and ‘participant co-researcher(s)’. This is a book that wants to challenge and invert the traditional knowledge pyramid (Hassan Murad el ah, 2016) and champion personal knowledge and the creativity of the individual. As the reader, we also want to encourage you to undertake participatory case study work and after reading the book, or a selection of chapters, we hope that you will be inspired to give it a try.
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