Generating a collective theory from a series of personal theories
Generating a collective theory of early diagnosis in Parkinson’s: The value of the participatory in participatory case study work
Generating a collective theory of early diagnosis in Parkinson’s
The value of the participatory in participatory case study work
Sally Roberts, Sion Williams and John Keady
This chapter deviates from the preceding chapters in the book by outlining how academic co-researchers can start to make sense of a number of different theories that have been produced by participant co-researchers on the same topic area, all using participatory' case study work. In this chapter, we focus on Douglas, Norman, Mary and Hugo (as a couple) and Vic as participant co-researchers who had produced four separate personal theories about what it was like to live with a diagnosis of early Parkinson’s. The study protocol tied each study together, although the participant co-researchers did not know one another during the research process. This work was led by Sally who undertook an MPhil degree in Bangor University and was primarily supervised by Sion. Sally also worked as a Parkinson’s Disease Nurse Specialist prior to, during and subsequent to concluding the participatory case study work - and the cross-case analysis - that is reported in this chapter.
However, we will commence this chapter by briefly outlining some of the salient issues in an early diagnosis and adjustment to Parkinson’s before providing a pencil sketch of the five participant co-researchers who took part and the main outputs of each study. We will then outline the steps that led to the production of an overarching theory' that linked-up the five individual personal theories into one collective theory on the early adjustment to Parkinson’s. At the heart of the shared enterprise between Sally and the five participant co-researchers was the use of visual, arts-based practice to unlock key insights and learning about a re- framed life and sense of selfhood with Parkinson’s. The chapter will also share the importance of creativity in participatory case study work as well as mapping collaborative techniques for cross-case analysis.
Parkinson’s: Context and considerations
Throughout history, tremulous medical conditions have been recorded. In the 15th century, in his anatomical manuscripts, Leonardo da Vinci described a condition in which people had uncontrollable tremors in their limbs. Nearly two centuries later, the English philosopher Thomas Hobbes (1588-1679) in his later life was described by an acquaintance (John Aubrey 1626-1697) as having ‘the shaking palsy in his hands’. Before the start of the 19th century, medical scribes, including Sylvius de la Boe (1614-1667), Gerard van Sweiten (1700-1772) and Boisser de Sauvages (1706-1767) also reported twitching movements and chorea in their patients. However, it was not until the early part of the 19th century in London that the physician James Parkinson (1755-1824) provided a clinical description of a number of his observations, observations that draw a historical line from then to now (Roberts, 2016).
Parkinson’s is the second most prevalent neurodegenerative disorder, following Alzheimer’s disease (Shamaskin-Garroway et al., 2016) and is estimated to impact on 2-3% of the population aged >65 years (Poewe et al., 2017). It has long been recognised as a chronic illness that has a major impact on health that requires substantial personal and social adjustments (Abudi, Bar-tal, Ziv et al., 1997; Playfer, 2002; Duncan et al., 2014; Hand et al., 2017). The facts relating to the incidence of Parkinson’s underscores its significance, with an increasing prevalence extending by approximately 18% from 2018 to 2025 and affecting in excess of 168,000 people in the UK. However, projections indicate a particular shift starting from 2025 with an anticipated increased annual incidence to over 21,000 people, with a subsequent doubling by 2065 in both its prevalence and incidence (Parkinson’s Disease Society, 2018). Parkinson’s is a multi-system disorder, but the fundamental motor signs are tremor, akinesia, muscular rigidity and postural instability. As the disease progresses, communication and swallowing difficulties and neuropsychiatric problems also feature. Cognitive and behavioural problems may become apparent; dementia commonly occurs, especially in the later stages, and depression is also a common psychiatric symptom. Sleep disturbance, emotional problems, anxiety, visual hallucinations and apathy are the most common mental health issues present in this condition.
The symptoms of Parkinson’s manifest differently in individuals and, although it is a progressive disease, the rate of progression varies (Politis et al., 2010). The early core motor symptom presentations are well documented, centred on tremor, slowness and stiffness and changes in gait. Whilst tremor is the most obvious and common symptom of Parkinson’s, it is absent in around 30% of people at presentation and some may never experience it (Jankovic, 2008). Secondary' motor symptoms (Jankovic, 2008) and non-motor symptoms (Chaudhuri, 2006; Chaudhuri et al., 2006) may be present at diagnosis but often develop as the disease progresses. In particular, non-motor symptoms are often a major facet of life with Parkinson’s (Shamaskin-Garroway et al., 2016; Poewe et al., 2017). In this way, as a chronic and progressive condition, it necessitates continual adaptation within daily life (Sunvisson et al., 2001). Tremor, restlessness, pain and fatigue, for example, are often magnified by emotion and mood. The natural desired outcome of illness is recovery, but for those with Parkinson’s, the more realistic outcome is that of maintaining psychological and physiological well-being and keeping an internal balance throughoirt variable symptom control, termed and described as allostasis (Sterling and Eyer, 1988; McEwen and Wingfield, 2003; Sterling, 2004; McEwen, 2007). Balancing requires a recognition of the complexity in seeming the locus of control by people livening with Parkinson’s (Rizza et ah, 2017) and enabling the development of resilience as part of their adjustment to a challenging range of symptoms (Shamaskin-Garroway et ah, 2016).
The study design attempted to reflect the lived experience of Parkinson’s and engage people as participant co-researchers, exploring a range of personal accounts to enable a broader, collective picture to emerge. The study findings and the clarity of people’s voices as participant co-researchers remain highly relevant within contemporary research and practice in the field of Parkinson’s. Ar guably, the research on how people with Parkinson’s deal with their disease and develop coping strategies ‘remains patchy’ (Anzaldi and Shifren, 2019, p.231). However, increasing creativity and attention is being used in this area (Lovegrove et ah, 2017; Lirtz et at., 2018). At the heart of the chapter is a description of how Sally as a postgraduate practitioner-researcher generated a participatory approach that handed-over control of a diagramming and mapping process that was integral to enabling their voices to be heard, facilitating a richly textured, longitudinal and visual account of life with an early diagnosis of Parkinson’s to emerge.
This part-time MPhil study was completed by Sally at Bangor University between 2004 and 2009. In line with the studies already outlined in the book, a longitudinal design was adopted but, on this occasion, focused on the early adjustment to Parkinson’s. The overall study design utilised constructivist principles (Charmaz, 2000; 2006) which were aligned to a series of detailed participatory case studies involving the collation and collection of individual life-stories and shared theoretical work. This enabled participants within each participatory case study to act as co-researchers and to map their individual experiences of Parkinson’s over time. A process that led to the development of a constructivist grounded theory that provided the mechanism of learning and action for the participant co-researchers and Sally.
The initial step in the data collection cycles by Sally was creating a chaptered life story of participant’s lives using the framework developed by Gubrium (1993) - a process already described in Chapters 5 and 6 of this book. This approach enabled a narrative structure to emerge that uncovered a sense of self and to provide a route to the ‘meaning bridges’ (Osatuke et ah, 2004) that helped construct each personal theory. The second step focused on creating a ‘storyboard’ through centre stage diagramming (Williams and Keady, 2012a,b). This built on the chaptered life story script and sought to help participant co-researchers analyse key events in their lives linked to understanding their lived experience of an early diagnosis of Parkinson’s. Diagramming was structured around three centre stage questions: ‘Who is centre stage in my life’; ‘What is centre stage in nry life'; atrd ‘Where is centre stage in nry life’ In this way, the diagramming provided a framework for capturing significant events, epiphanies or critical points. These were dynamic and iterative diagrams and revisited over time during each encounter. Importantly, the centre stage diagrams were amended and/or modified until an agreed and authentic position was reached and the diagram ‘signed off by the participant co-researchers.
Analysis of centre stage diagrams and visual media focused on using positioning analysis (Davies and Нэпе, 1990; Нэпе and van Langenhove, 1999). Positioning analysis views the social world as a place of interactive discourse between the actors, such as individuals, groups, social institutions and cuhural practice. As such, implicit and explicit patterns of reasoning and actions are surfaced by focusing on their ‘positioning’ in relation to each other (Нале et al., 2009; Allen and Wiles, 2013). At the core of positioning analysis is a concern to understand the dynamics of people’s cognitive schemas and their relationship to social action and agency. Social actors may position themselves within particular social roles and within the social milieu with anticipated and unanticipated consequences for adopting a position (O’Connor, 2007). Significantly, positioning analysis highlights the importance of viewing positions and their interactions within a particular context, as well as recognising their transient nature, seen as ‘momentary and ephemeral’, and subject to challenge by other actors (Нал е et al., 2009).
All participant co-researchers in this study followed the same approach but all came to a different product in explaining/exploring then lived experience. It is this similarity of design and difference in reporting that enables a cross-case analysis to be made and a collective theory' of early adjustment to Parkinson’s produced. We will now provide a pencil sketch of each of the participant coresearchers and their mam creative outputs/personal theories which were later- used as the basis for generating the collective theory of the early adjustment to Parkinson’s by the academic co-researcher, Sally. Ethical permission to conduct the study was provided by an appropriate NHS research ethics committee and permission to show faces through photographs was obtained, but all names used for the participant co-researchers are pseudonyms.
The participant co-researchers and their personal theories
1. Douglas: Pencil sketch outline
Douglas was a 74-year-old gentleman who lived with his second wife Veronica. Douglas was diagnosed with Parkinson’s in March 2004, 17 months prior to participating in this study along with Veronica. He initially presented with mild motor syrrrptorrrs that required no treatment for the first 12 months; however, the symptoms became more troublesome and effective medication was commenced a few months prior to him consenting to this study. He had co-morbidity including cardiovascular disease for which he took medication and had experienced two transient ischemic attacks. In 2011, his memory' and executive dysfunction became a more significant difficulty and he was diagnosed with dementia following re-referral to the memory clinic. In total, there were 27 study visits to be alongside Douglas with the final visit in April 2009 to check that his personal theory' had not changed since signing off from the study 18 months previously. Face-to-face data collection and co-construction ran to a total of 62 hours contact time. All interviews were earned out in the participants’ home.
Photographs 8.1a and 8.1b reveal Douglas using craft-felt modelling to show what was centre stage in his life - with the middle of the page being both visually and metaphorically indicating what is most important in his life. The greater the distance from the centre, the more remote and distant the perceived connections (see Williams and Keady, 2012a,b).
Photographs 8.1 a and b: Douglas centre staging his personal theory.
As Photograph 8.1b demonstrates, Douglas built the representation of his early adjustment to Parkinson’s by choosing to use craft-felt modelling through a centre stage diagramming approach. This carried through the storylines in the diagram and reset these in a personal, lived context for Douglas with Parkinson’s and its symptoms positioned centre stage. He placed what he described as the major negative factors in the front of the stage, these being: ‘Family’, ‘Stress’ and ‘After diagnosis shock and coping’. Douglas still found the ‘Now’ of living with Parkinson’s unpredictable to cope with, yet his wife, Lily (the dog) and pre-diagnosis [life] were seen as positives on the stage, helping to balance the negative factors. ‘At diagnosis’ was placed on the periphery of the stage and almost off scene.
Norman: Pencil sketch outline
Norman was an 84-year-old gentleman who lived with his wife Joan. They married in 1949 and had three sons, who subsequently married resulting in eight grandchildren and a number of great-grandchildren. These were a great source of pxide. Joan has been treated for breast cancer and cardiac problems, and at times she would collapse without warning. Norman was diagnosed with Parkinson’s in March 2004, some nine months prior to participating in this study. He initially presented with moderate motor symptoms which he found disabling. When walking a neighbour’s dog, he had a couple of falls having veered off the path and his tremor was causing functional difficulty and embarrassment. The symptoms had been noticeable for two years and were initially self-diagnosed as a stroke. However, as the symptoms gradually worsened, he was referred to a specialist movement disorder clinic for assessment. There was a long waiting list, therefore, prior to his clinic appointment, Norman was referred to the Parkinson’s Disease Nurse Specialist and the GP started him on medication. Norman responded well to this approach. Sadly, dining the study period, his motor symptoms worsened, and medication options became limited by 2006 because of dyskinesia and neuropsychiatric side effects. In total, there were 22 study visits, with the final visit in November 2007. At this last study visit, the researcher noted a significant deterioration in both Norman and Joan’s physical health.
As seen in Photograph 8.2 and Figure 8.1, Norman’s personal theory focused on his final storyboard and centre staging ‘craft-felt’ diagramming, similar in approach to Douglas. Within the centre stage diagramming, Norman suimnarised the components underpinning the craft-felt representation, identifying the movement of adjustment to life with an early diagnosis of Parkinson’s focused on (1) suspicion or thinking there was something wrong; (2) learning or getting to know something new; (3) dealing with it; and (4) [My life stage] now.
Mary and Hugo: Pencil sketch outline
Maiy was a 68-year-old woman who lived with her husband Hugo, who continued to engage in everyday activities such as washing the car and keeping active in the
Photograph 8.2 Norman: symptoms change as a centre stage diagram.
garden. The couple had three children. Mary was diagnosed with Parkinson’s in December 2004, some ten months prior to participating in this study. She initially presented with mild to moderate motor symptoms which required treatment, with involuntary movements beginning in both feet within less than a year of treatment. Her other identified difficulty was with sleeping with a complex symptom of jerking her legs, kicking out and hitting her husband during her/his sleep. When she was awake in bed, Maty had restlessness and burning feelings in her legs, making her need to get up and walk around. In total, there were 24 study visits with a final contact in April 2009. A further two contacts were made during the study period where the role of researcher returned to a clinical intervention and interviews were temporarily postponed.
As part of the centre stage diagramming work and as seen in Photograph 8.3, Mary and Hugo also used craft-felt, although Hugo helped Maiy with the scissor work. Centre stage for Maiy was the most dominant symbol of ‘Symptoms, Hate green, Hated Symptoms’, with a revulsion and fear of symptoms. In terms of prior to the diagnosis of Parkinson’s, there was the depiction of a sense of ‘sinking, life going from me’ characterised as ‘Before diagnosis, Dark Hole’. Significantly, for Mary as part of this depiction, she chose the colour blue as it was her favourite colour and represented her stable and happy life which ‘suddenly has a great big gaping hole in it’. This period of her Parkinson’s is positioned at the back left of
Figure 8.1 Norman mapping movement and life experience with Parkinson’s: final storyboard.
Photograph 8.3 Hugo and Mary: detailing the centre stage impact of Parkinson’s.
the stage ‘cos its left me I suppose’. Maiy was optimistic that she would not return to that period in her life, it would remain backstage.
Vic: Pencil sketch outline
Vic was a 66-year-old gentleman when entering the study. He lived with his wife Barbara whom he married in 1963 having known her for four years previously. They met in their work environment when Vic was 19 years old. The couple had lived and worked in North Wales all their lives, residing comfortably in their dormer-bungalow in a quiet housing estate. They had a son and a daughter both living within the vicinity and saw their families regularly. Vic also had a 15 year old grandson whom he spent as much time with as possible as they shared an interest in fishing and walking in the woods. Vic described his family as ‘there for each other, but not living in each other’s pockets’.
In 2004, at the age of 64, Vic was diagnosed with probable essential tremor, having described a tremor in his left hand dating back almost 20 years which, being left-handed, he found particularly bothersome when drawing. Initially, he was told he had benign essential tremor, but after a further examination, his general practitioner suspected Parkinson’s and referred Vic to a movement disorder clinic for confirmation of the diagnosis. At his first appointment in 2005, there was some lack of facial expression and poor left-arm swing on walking noted by the specialist consultant. There was also some mild fatiguing in the ability to make repetitive movements in his left hand. Despite an unusual history and presentation, the consultant organised a ‘DatScau’ to see the status of the nigros- triatal tract to assist with diagnosis. A few months later, Vic was told it appeared he did have idiopathic Parkinson’s. His symptoms had become more noticeable and the diagnosis was supported by the ‘DatScan’ results. In total, there were ten study visits with the final visit in November 2007. Vic was a gifted cartoonist and the four shared cartoons (Figures 8.2, 8.3, 8.4, 8.5) tell a self-explanatory story about his journey through diagnosis to adjustment to his idiopathic Parkinson’s. Interestingly, in the final frame, Vic introduces himself as the narrator as well as the subject of the cartoons. This is the only scene where he shows himself alone and making clear eye contact with the observer, evoking a sense of being alone with the diagnosis as he stares out of the page.
The final part of the personal theory was a reflection on Vic’s biography where he centred himself and his response to Parkinson’s and the diagnosis within two additional cartoons drawn from his chaptered life story script. Vic diagrammed a ‘cabling’ cartoon (Figure 8.6) of him mending faulty power cables, depicting him working to restore order and balance in his life, which is supported by his wife ‘who packs him off with sandwiches and a kiss’. In this way, Vic’s storyline of control is contextualised in his occupation in the electricity generation industry
Figure 8.2 Vic: exploring adjustment through cartooning (I of 4).
Figure 8.3 Vic: exploring adjustment through cartooning (2 of 4).
and addresses the threat posed by the dark creature in the brain scan in the earlier cartoon. Importantly, as with the earlier scenes, Barbara and their relationship is centre stage. The second drawing was also grounded in his biography but based in his early youth. Vic used the event when he tumbled off his bike, which he likens to his ‘car crash’ of a diagnosis. However, the ‘new position’ is not fraught and dark, rather, it is characterised by a ‘“Yarroo” but can’t walk away from this one’ (Figure 8.7).
Moving from the personal theory to the collective theory: A cross-case analysis
Importantly, the longitudinal study by Sally centred on detailed case study work that was anchored within a constructivist approach, with a particular emphasis on a participatory, visual and arts-based stance (Leary, 2015) that enabled participants to engage in, and frame, ‘discovery learning’ (Stake, 2000). The alignment between a constructivist approach and participatory case study work, combined with a visual, arts-based practice was important. It provided a rich palette for
Figure 8.4 Vic: exploring adjustment through cartooning (3 of 4).
participants and researcher to collaborate together to generate an empowered and authentic account, using a varied and intrinsic orientated visual form.
The cross-case analysis work by Sally was completed as part of the ongoing fieldwork, embedded in a constant comparative approach set in the partnership work within and across cases. As part of an iterative process, Sally initially asked herself and the collected data (in the form of the four personal theories shared in this chapter) three interrogative questions: 1) What am I looking at? 2) What is it I am seeing? 3) How do the pieces fit together? Sally took time to reflect on each participant co-researcher personal theory' with her supervisory team. As part of the initial collective theory-building process, the four personal theories were then collected together with the purpose of sharing all four personal theories individually with all the participant co-researchers in this chapter. Accordingly, in making this leap from a personal to a collective theory that still involved all the participant co-researchers, the interrogation of the data shifted from an T to a ‘We’ narrative, namely: 1) What are we looking at? 2) What is it we are seeing? 3) How do our pieces fit together?
In developing this ‘we’ narrative where Sally was working across cases but still involving all participants in the study, Sally used a story'board to document, record and test the collective theory through an approach to group analysis where,
Figure 8.5 Vic: exploring adjustment through cartooning (4 of 4).
in our example, none of the participant co-researchers actually met each other in person but they were connected through their shared personal theories. This storyboarding of the personal to the collective theory was a form of ‘comparison’ (Stake, 2005) which focused on Teaming about and from the particular case’ (p.457). As Sally moved back and forth amongst the participant co-researchers to continually build the representational and agreed storyboard, the approach proved to be authentic and a ‘powerful conceptual mechanism fixing attention upon one or a few attributes’ (Stake, 2005, p.457).
In this way, the theoretical representation and explanation provided by individual cases with Sally formed the platform for an extension from the intrinsic to the collective case study, focused on ‘teaming’ to build a collective theory. Stake (2005) argues that ‘teaming’ of researchers is required where the cases are complex or collective in nature as ‘no individual can handle the complexity’ (p.453). However, in this instance, Sally purposefully brought all participant co-research- ers into the process of teaming, with the supervisors, Sion and John, a secondary source of teaming. This enabled the interpretation and coding processes to be completed by Sally and the participant co-researchers as part of the case study approach. The blended approach aligned with both the precepts of Charmaz (2000) and participatory case study work (Reilly, 2010). The visual form of the
Figure 8.6 Vic drawing it together: fixing the cables.
personal theories was integral to enabling this form of teaming and engagement in comparison across cases.
The comparative analysis across cases led to a collective theory that modelled participant adjustment of co-researchers to an early diagnosis of Parkinson’s. This focused on four dynamic, iterative and interrelated stages (Figure 8.8) which led to the emergent discovery of ‘suspecting’, Teaming’ and ‘dealing with it’ emerging from the personal theory accounts rooted in the collective coding of the biographical storyboards and centre stage diagrams. The discovery of ‘suspecting’, Teaming’ and ‘dealing with it’ became a collective theory that charted the shifts in people’s lives following the onset, diagnosis and early adjustment to Parkinson’s and its impact upon everyday life. The cases of Douglas, Norman, Maiy and Hugo (as a couple) and Vic were of central importance in driving
Figure 8.7 Vic’s acceptance.
forward this comparative and collective analysis and showcasing this particular method in action.
The four iterative stages of the collective theory in Figure 8.8 will now be outlined further.
The initial diagnosis and the journey leading up to it provided the template for future staging, based on the acts of ‘suspecting’, Teaming’ and ‘dealing with it’ performed by people with Parkinson’s such as Vic, Douglas and Mary. In terms of ‘suspecting’ the person with Parkinson’s nuanced sense of self was important, awareness of a sense of body and biography, interpreting falling over or other symptoms as a cause for concern and action or avoidance. An adaptable approach derived from life story-biography also provided a template for ‘learning’, with the years of experiences from the past leading to a proactive and adjusting approach or a negative and entrenched approach. Equally, as part of‘dealing with it’ and a response to Parkinson’s as a diagnosis, the initial template of the immediate postdiagnosis experience was important in mediating future staging.
Figure 8.8 Moving from a personal to the collective theory in participatory case study work: outlining the staging model in early Parkinson’s.
2. Constant interloper: Staging symptom change
The second staging focused on the interloper of symptom change and modulation in people’s lives and the engagement in the ‘suspecting’, Teaming’ and ‘dealing with it’ process. This focused on making sense of the uncertainty or instability caused by Parkinson’s symptoms. The experiential and subjective journey of life with Parkinson’s led to an increased sensitivity and awareness to people’s own bodies and sense of self, identifying changes even if nuanced. This form of ‘suspecting’ enabled modifications to or new symptoms to be identified rapidly or missed. In a similar manner, ‘learning’ and ‘dealing with it’ became either more sophisticated or static, for instance, in either learning about the impact of emotion and stress or resisting any change in perspective.
3. Staging now: Building a present
The third stage focused on how people built a sense of the present and ‘living day-to-day’ with Parkinson’s as an accompanied part of their everyday life. This involved a sense of Parkinson’s symptoms as being lived experiences and any symptom change as paxt of‘suspecting’ being integrated into people’s daily lives. In this way, Parkinson’s occupied a position as the ‘third person’ in a spousal relationship or family member. As part of the third stage, there was either an accumulation of Teaming’ and ‘dealing with it’ based on learnt strategies, or people became ‘stuck’ with earlier, pre-existing patterns of adjustment that were out of step with current symptoms. Parkinson’s was seen as controllable through medication and learnt strategies to maintain ‘day-to-day life’ but with the horizon focused on the present with few long-term plans.
4. Staging the future: Unresolved uncertainties
The fourth stage focused on the uncertainties of future change and seeking to maintain stability. ‘Suspecting’ was an active process of being alert to change, involving both anxiety and hope, focused on any potential future change. The Teaming’ and ‘dealing with it’ strategies were consolidated from earlier stages and this consolidation was seen as critical to maintaining stability. The main aim of this fourth stage was to establish Parkinson’s within the coirtext of a person’s life both in the present and looking towards the future focused on retaining a sense of control. This depended on an understanding of how Parkinson’s behaved in their lives with an understanding of triggers that caused exacerbation of symptoms, how to manage medication and ‘off periods.
Insights gained Diagramming and visual data
As part of qualitative research, engagmg people in analysis has become increasingly significant but also involves discrete and complex relationships as part of reciprocity (Harrison et al., 2001). The study design developed a particular visual method of coconstruction within the ‘centre staging’ framework, using craft-felt as well as a range of diagramming and the use of a range of motifs. The process of building personal theories involved a dynamic process with an iterative and cyclical movement back and forth between the life stoiy script, diagramming and the centre staging. This involved generating a series of storyboards with increasingly more detailed analysis linked to change and as participants through the lens of being co-researchers re-eval- irated their own positions, their ideas and representations of life with Parkinson’s. This approach blended a dramaturgical metaphor and visual method embedded within a narrative approach. The cornbitring of narrative with a visual, arts-based form of research provided opportunities for new insights and leanring (Leary, 2015). This required Sally as the academic co-researcher to ‘step out’ at times and allow' participant co-researchers to lead the process and guide her wirerr they needed her to ‘step in’ to help with the annotation, mapping or visual teclmique. The engagement in visual and participatory art enabled participant co-researchers not only to articulate aspects of their personal identity narratives, but also to ‘illuminate, build understanding, or challenge our assumptions’ (Leary, 2015, pl7).
On reflection, the work completed by Sally rvas highly innovative in its fitll engagement rvitlr participant co-researchers in using and then developing the centre staging through visual media. This is exemplified by Mary and Hugo tailoring the craft-felt and rtsitrg imagery and motifs rvitlr annotation compared rvitlr Douglas or the cartooning of Vic. As such, Sally’s work resonates rvith the observations by Roger and Blomgren (2019), who highlighted the potency of visual media as part of participatory' approaches in qualitative rvork.
Building on the life story' script and the storyboards, the ‘centre staging’ involved a series of diagrammatic and/or visual representation of people’s experiences (Williams and Keady, 2012a,b). These were revised and refined through partnership working between Sally and participant co-researchers. At the onset of the work, diagramming was the key platform for centre staging with paiticipant co-researchers shaping comiections between life story script, stoiyboard events and what might be centre stage. This is depicted in Douglas’ schematic account (Photographs 8.1a and 8.1b) focused on ‘life story’ in the far left comer with storyboard what, how and when elements (shock at diagnosis, maintaining it now and so on), which surfaced ‘now’ as a feature of the later craft-felt centre stage diagram. As illustrated in Douglas’ early diagramming, the process was one of uncovering, exploration and seeking comiections and mapping relationships.
Importantly, as part of the study, the researcher was both a practitioner and a researcher and this dimension of the research design was supported by the principles of ‘practitioner-research’ captured in the early work of Reed and Procter (1995). This was seen by Sally as providing an important sense of identity to her and a platform for creating an egalitarian relationship with the participant co-researchers. Reed and Procter (1995) in their seminal text highlight that practitioner-researchers are pait of the world they are researching, in a way the academic researcher caimot be. Alongside this, Sally also based her approach on Ironside el al. (2003), who emphasised the importance of co-creating a shared understanding of the lived experience of chronic illness and uncovering a ‘touchstone of meaning’ (p.180). In this way, Sally developed her own stance as a practitioner-researcher prior to entering the field to explicitly frame her own position, before then seeking to engage her participant co-researchers in a participator}' approach. This was seen as an important first step to creating an egalitarian and empowering way of working that put participant co-researchers centre stage in the case study work.
The study required approval by Bangor University, NHS Ethics and NHS Research and Development, including the provision of a research passport and current Criminal Record Bureau Check (CRB) certification (re-named in 2012 to Disclosure and Barring Service Check [DBS]). A particular feature was the shifting pattern of engagement with participants as Sally was both a practitioner and researcher. At times, as part of the process, it was necessary to change roles as a practitioner-researcher based on the procedures outlined in the research protocol, with some visits returning to practice rather than research encounters. For instance, more time was allocated to clinical consultation during the mid-period of the study period with Maiy and Hugo due to changing health needs
Issues of reflexivity
Analysing what was centre stage in the case studies
Positioning analysis alongside the centre stage techniques was important within and across case studies. They provided a framework for Sally to explore what was important in people’s lives as part of the diagnosis and adjustment in early Parkinson’s. However, this required the contextual work secured by the narrative framed within the life story script and the development of stoiyboards. Together they enabled a suite of methods for reflexive analysis and explanation, which provided the toolkit for participants as co-researchers to articulate their personal (and later collective) theory through diagrams and visual media.
Throughout the identification of ‘what was centre stage in my life’ provided an understandable and accessible term of reference for people to reflect upon and consider (e.g. influences, relationships and events) and then specify these clearly. These enabled a rich process of reflection in which Sally could engage and develop a co-constructed account. Sally’s role was to guide participant co-researchers to make explicit their positions and explore how what was centre stage changed over a period of time. Sally developed with the participant co-researchers a framework for charting changes over time as part of making sense of the analysis. This focused on what Sally termed intuitive, re-positioning and final positioning to enable them to frame then experiences, as we will explain further.
i. Intuitive positioning - this related to the biographical reflection and initial diagramming making explicit positions that people adopted and enabled the narrative to be developed through a chaptered life story script and then storyboard; these were the foundation for the later exploration of storylines and centre staging ideas.
ii. Re-positioning- this involved the critical appraisal of initial stoiyboards, storylines and centre stage diagrams, including revisions, additions and amendments over the series of encounters until they were ‘signed off.
iii. Final positioning - the final positions mapped any further reflection or reappraisal of positions and changes, leading to a grounded personal theoiy that built on a sequence of storyboards and centre staging activity.
Discussion and conclusion
The chapter details the use of participatory case study work aligned with a constructivist grounded theory approach (Channaz, 2006; Varm-Ward et ah, 2017). At its core is an attempt to uncover the story' of how Sally enabled the voice of the participant to emerge in exploring the lived experiences of people in adjusting to a diagnosis of Parkinson’s as a ‘new place’. This cormects with emerging literanire seeking to articulate the complexity of this ‘new place’ amongst the shifting ground of Parkinson’s (Lutz et al., 2018; Vann-Ward et al., 2017; Hand et ah, 2017; Gardenhire et al, 2019; Lovegrove et al, 2017). Significantly, the study was completed by Sally as a practitioner-researcher as part of a postgraduate research degree. It also resulted in Sally as the practitioner finding herself in a ‘new place’ focused on the nature of ‘discovery learning’ (Stake, 2000). Furthermore, it also involved hidden elements of social action, combined with the theoretical outcomes of the collective theory centred on the co-researched ‘suspecting’, ‘learning’ and ‘dealing with it’ model (Figure 8.8). This built on the individual and intrinsic accounts described as personal theory as detailed in the chapter by reference to the key exemplars of Noiman, Douglas, Maiy and Hugo, and Vic. The collective theory from the cross-case analysis provided an overarching account of the participatory case studies conducted in the overall study.
The chapter charted how Sally sought to breach the convention described by Atkinson (1998) as the researcher traditionally being the navigator ‘co-creat- ing meaning’ and working with participants. The difficulty of such a pragmatic approach is that the ownership of the ‘co-created meaning’ often rests with the researcher and we tread very lightly indeed in the phenomenological field of our participants (Atkinson, 1998). The chapter also highlights how Sally sought to fulfil a participatory case study approach aligned with an empowering constructivist stance that did not simply ‘tread lightly’, but firmly anchored her approach within the phenomenological field of participants as co-researchers. This was achieved through innovation based on using dramaturgical and arts-based practice methods, focused on generating a biographical narrative through a chaptered life story script, the development of a storyboard and subsequently visual centre staging teclmiques prior to consolidating a personal and collective theory by being the lynchpin that facilitated a collaborative approach to collective/team analysis. At all parts of a participatory process, the emphasis was on establishing an egalitarian relationship and enabling the voice of participant co-researchers to dominate and resonate within and across cases using visual, arts-based practice (Leavy, 2015). Sally rooted her perspective of the ‘research act’ in the seminal text by Denzin (1987) and adopted an authentic emotional understanding based on generating this innovative range of methods and procedures to enable the participant co-researcher(s) to co-construct meaning as part of longitudinal case study work.
Overall, this chapter has highlighted how the use of participatory case study work can be aligned with a constructivist approach and utilise a range of visual and creative arts-based methods and techniques to ‘open up’ the complexity of people’s response to an early diagnosis of Parkinson’s. It also maps how these methods and teclmiques provide an easily accessible approach to drill-down to a deeper level of analysis and thereby generate authentic theory that enables participants as researchers to achieve ‘discovery learning’ (Stake, 2000) within participatory case study. Crucially, the chapter narrates how a participatory approach using visual media can be empowering for both the participant and researcher as a shared space for creativity, theorising and insight, and move from the personal to the collective theory presentation.
Key learning points from the method used
- • The creative techniques developed by Sally were pivotal in enabling the empowerment of people with Parkinson’s to realise the vision of participatory case study and constructivist grounded theory in providing the tools for co-researching lived experience. They were also developed inductively with participant co-research- ers and tailored to their needs, narratives and contexts, including alignment with biography or physical abilities. For instance, this ranged from vivid cartoons as part of a hidden talent by Vic to the creative use of craft-felt by Mary and Hugo.
- • The account presented by Sally highlights not only the importance of rooting case study in highly detailed work with individual cases to uncover nuances of the intrinsic experience, but also the power of the intrinsic case as part of a collective set of cases. Despite the varied medium of the narratives produced during the study (visual, diagrammatic schematics and cartoons), the use of positioning analysis alongside a centre staging technique enabled a collective theory to be generated, providing the mechanisms for fr aming a rich and highly textured narrative-based account.
- • As a longitudinal study, Sally’s work with the participant co-researchers surfaces the value of a ‘prolonged conversation’ (where possible) as part of a participatory case study design. In this way, visual, diagrammatic or cartoon- based accounts traced the development of early adjustment to Parkinson’s over time, as part of a lived experience. It also enabled ongoing learning by both Sally and the participant co-researchers, developed in partnership, which increased the depth of how the lived experience of Parkinson’s was represented following a diagnosis. As such, there is both breadth and depth to such an approach within participatory case study work.
- • The development of the collective theory as part of the participatory case study work resulted in a series of tangible actions within the lives of the participant co-researchers, Sally as a Parkinson’s Specialist Nurse positioned as the academic co-researcher and the movement disorder clinic. This was at the individual level for participant co-researchers reporting new insights into their condition and diagnosis path, as well as Sally seeing the emic perspective from a new and altered stance. At an organisational level, the participatory case study work led to changes within the movement disorder clinic and a renewed centrality to the importance of personhood and biography.
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