Diagramming stroke survivorship and recovery: Supporting Malcolm and Margaret to conceptually develop and find meaning in the ‘stroke circle’ and its situated function as a ‘boundary fence’

Diagramming stroke survivorship and recovery

Supporting Malcolm and Margaret to conceptually develop and find meaning in the ‘stroke circle’ and its situated function as a ‘boundary fence’

Josie Wray, Sion Williams and John Keady


This chapter will centre on the illustrative case study of Malcolm, as a stroke survivor, and his wife, Margaret, and the way that participatory case study work aligned itself with centre stage diagramming, positioning theory and constructivist grounded theory to generate a visual representation of the lived experience of stroke survivorship and a changing relational dynamic. Stroke remains a major public health concern and is recognised by the World Health Organisation as a significant cause of moxtality and morbidity across international populations (Sadler el ah, 2016). The account by Malcolm and Margaret was a pivotal story within a wider PhD study conducted by Josie on adjustment to stroke and the meaning of stroke survivorship. The joint experiences of Malcolm and Margaret were voiced through life stoiy and narrative-based interviews, supplemented by centre stage diagramming, resulting in a collaborative and interpretative research process. The four ‘what are centre stage’ diagrams shared in this chapter were produced by Malcolm and Margaret over a three-year period and led to the conceptual development of the ‘stroke circle’ and its situated function as a ‘boundary fence’ to explain stroke survivorship. This chapter will reflect on these analytical and textured processes and the collaborative approach to research taken by Malcolm, Margaret and Josie in line with the vision of participatory case study work as outlined in Chapter 1. However, before this is approached, the chapter will start by looking at the background to the reported study around stroke and stroke survivorship.

Study background

The study that informs this chapter was part of Josie’s part-time PhD study registered at Bangor University with Sion being the primary supervisor. At the time of stalling the PhD study (September 2006), Josie was a nurse specialist in the stroke sendees at a local NHS district general hospital in North Wales. Here, Josie was responsible for developing improvements in the range of psychosocial approaches available for stroke survivors accessing both the stroke service and stroke unit. For the duration of Josie’s engagement with her part-time PhD study (2006-2014), it is fair to say that she acted as a practitioner-researcher (Reed and Procter, 1995), bringing to the study a blending of clinical knowledge and theoretical sensitivity. Whilst the study reporting may be considered a little old now, it is noteworthy that the themes emerging from the literature review that informed Josie’s work continue to chime with the contemporary literature (February 2020 at the time of writing). This is starkly evidenced by Rudd et al. (2018) who, reflecting on the passing of 30 years since the ground-breaking consensus statement on stroke services made by the Kings Fund Forum (1988), stated that revisiting the document made for ‘uncomfortable reading’ (p.998). This is because from the late 1980s to the present day, there has been a lack of progress across a range of areas with ‘still insufficient understanding’ (Rudd el al., 2018, p.998) about the impact of stroke on patients and families and the continuing poor communication between and across multidisciplinary team members, patients and families.

However, in the intervening years since Josie started her paxt-time PhD and today, there has been an increasing recognition about the importance and utility of developing specific psychosocial interventions for stroke patients focused on areas such as a sense of coherence and psychosocial well-being (Kirkevold et al., 2014; Amtzen et al., 2015; Kirkevold et al., 2018). In the literature, this is framed within three psychological components of rehabilitation and recovery, namely, managing expectations, a sense of identity and acceptance. These important constructs are often presented as ‘unmet needs’ (Bendz, 2003; Me Kevitt et al., 2011), a state of affairs that extends to the emotional impact of a stroke event upon the person him- or herself and their family network (Taylor et al., 2011). The importance of developing a series of interventions in these discrete areas, including narrative-based interventions (Kirkevold et al., 2014), is crucial given the potential influence of the stroke event for years after its first onset (Ellis- Hill and Horn, 2000; Rudd et al., 2018). This is important because, at its core, a person’s perception of their world post-stroke can be irrevocably changed by having to manage shifting social roles, a new-found identity and a revised sense of self (Haslam et al., 2008). As a fiirther illustration, a meta-ethnography of the literature by Hole et al. (2014) on the patient experience of psychosocial processes following a stroke, highlighted the influence of managing changes over time as being vitally important in successfiilly navigating and negotiating the trajectoxy or ‘evolution’ (p.l) of the stroke event.

Accordingly, uncovering a stroke survivor’s personal sense of identity and the wider psychological impacts from the stroke event remains an important agenda in driving forward improvements in clinical practice and research understanding (Hole et al., 2014; Sadler et al., 2016; Rudd et ah, 2018). Arguably, what has been holding the field back for many years is the dominant master narrative that comprises functional physical and psychological assessments in post-stroke adjustment and recovery without sufficient attention being paid to the complex nature of the stroke experience, in particular, following a person’s discharge from hospital to home. It is at this intersection where the case study of Malcolm and Margaret is both situated and shared.

The case study

To develop a biographical understanding about the lives of Malcolm and Margaret prior to the stroke event and Malcolm’s subsequent identity as a stroke survivor, Josie met the couple on a number of occasions and adopted a biographically framed interview technique in order to generate a chaptered life stoiy sciipt that was subjected to centre stage diagramming (Williams and Keady, 2012a,b). The main features of centre stage diagramming are covered in Chapter 3. This approach provided a platform for Malcolm and Margaret to be participant coresearchers in the overall participatory case study design. Josie met with Malcolm and Margaret a total of 16 times over a three-year period and the duration and frequency of Josie’s visits to Malcolm and Margaret’s home were flexible. This enabled short or prolonged visits depending upon the circumstances and the couple’s health status, and facilitated reflection on their shared stories, experiences and the narrative categorising of those experiences. All these meetings were digitally recorded (with consent) and were conducted in the home of Malcolm and Margaret.

Duiing the early encounters, it was important for Josie to generate trust and rappoit with Malcolm and Margaret by enabling them to complete a biographically orientated life stoiy interview. To do this, a modified version of Gubrium’s (1993) life story interview was used, as shared in Table 5.1.

However, Malcolm and Margaret also used the interview schedule in Table 5.1 to interview Josie and to establish what was important in her life. This helped the couple to get to know Josie as a person outside of the research and clinical identities that she brought to each encounter. This process, which we named ‘exchanging stories’, turned the tables in a power dynamic and helped to establish relationship equality and trust from the outset. This was especially important in the next phase of the collaborative process when Josie used the same life story interview guide in Table 5.1 with Malcolm and Margaret and saw them as people rather than as a stroke survivor and his wife/carer. Undertaking this process had a profound impact on Josie, as she recorded in her personal notes at the time:

I felt it had moved from research with a patient to three people working on something, working together on something which perhaps I hadn’t felt before.

What follows next is a set of extracts from the chaptered life story sciipt produced with Malcolm and Margaret and based on the set of biographical interviews conducted with Josie as outlined in Table 5.1.

Stroke survivorship and recovery 93

Table 5.1 Modified Life Story Interview Guide (Based on Gubrium, 1993)

The life story interview

Topics to cover

Life in general

1. Everyone has a life story. Tell me about your life in about 20 minutes or so if you can. Begin wherever you like and include whatever you wish.

2. What were the most important turning points in your life?

3. Tell me about the happiest moments in your life.

4. What about the saddest points?

5. Who have been the most important people in your life?

6. Who are you closest to now?

7. What does your life look like from where you are at now?

8. If you had the opportunity to write the story of your life, what would the chapters be about? (Probe about the last chapter.)


How would you describe yourself when you were younger?

• How would you describe yourself now?

• Have you changed much over the years? How?

• What is your philosophy of life? Overall, what is the meaning of life to you?

Malcolm and Margaret: Extracts from their chaptered life story script


Malcolm lived with his wife Margaret in a large detached house in a busy market town in North Wales. Prior to the stroke, Malcolm was physically fit and active, carried out building work as a hobby and helped his cousin on his farm. Malcolm also had a busy social life with regular holidays and active involvement with his grandchildren. However, at the age of 75, Malcolm suffered a stroke that resulted in a dense left hemiparesis, aphasia and swallowing difficulties. Within two days of the stroke, he had progressed to safely tolerating food and having only mild difficulties with his communication and language. Recovery from his left-sided weakness was slower than anticipated and had resulted in a need for help in order to cut-up his food, wash, dress and go to the toilet. Early recovery was further complicated by an extreme emotional lability that embarrassed Malcolm as he recognised that this was not how he would usually behave or how he wanted to react to situations.

The risk factors of raised blood pressure and paroxysmal atrial fibrillation had been evident before Malcolm’s stroke and secondary' prevention management provided support for life changes that would be necessary to reduce the risk of a second stroke. Malcolm shared that fear of having another stroke was his earliest memory after the event and he constantly craved reassurance that he was doing ‘everything possible’ to prevent a further event, as he shared at the time:

It come so sudden you don’t know anything do you. It just come sudden, that’s it. That’s the only thing I’m frightened of now.

Malcolm was dischar ged from hospital to home having regained his physical independence and experiencing no further problems with his swallowing or communica- tion; however, the emotional lability remained. Malcolm attended the post-discharge stroke clinic six weeks following discharge and reported three main concerns. First, that hearing difficulties were having a negative effect on his recovery; second, that he was becoming socially withdrawn due to the embarrassment and confusion of not easily hearing conversations; and third, that his confidence was low due to the early effects stroke had on his speech and conversational skills and that this was compounded by his difficulty in picking-up conversations when around others.

Overall, the collation of the life story interviews enabled Malcolm to help tell his story and have this represented as five core book chapters, which he termed and named as: ‘Childhood’, ‘A working life’,Marriage and relationships’, Margaret’s illness’ and the ‘Aftermath of stroke’. A summary of the main features of each of these five chapters is outlined below:

Chapter 1 - Childhood: Malcolm recounted how he left school at 14 years old, dining the Second World War, to become an apprentice bricklayer. Malcolm recalled the impact of the war on their lives and the sadness of losing his brother in the conflict: T was very close to my brothers’. He spoke only briefly of his school days but did consider that his childhood was a chapter of his life that should be recorded as part of his life stoiy sciipt.

Chapter 2 - A working life: Malcolm considered that his working life made up a significant chapter of his life story script, comprising ‘building, the army, nursing and the steel works’, and he emphasised that work and physical fitness had always been very important to him: ‘Well, I can only describe myself. I’ve been very fit all my life’.

Chapter 3 - Marriage and relationships : Here, Malcolm was much keener to tell the story of his marriage and relationship with Margaret and he began with: ‘When I got married was the happiest time of my life, and we’ve been happy ever since’. He expressed great affection for Margaret sharing that marriage had been ‘the most important turning point’ of his life and he recalled with laughter how he had to ‘steady on a bit’ when he got married and that he would always made sure that everything is ‘alright for Margaret ... I’ve always done that with her, made sure she is okay’. Yet, Malcolm’s stroke had impacted upon their relationship which was mainly focused on their opposite ways of coping. Malcolm wanted to talk about his experiences and explore his fears and risks of a further stroke, whereas Margaret described how she would ‘put things behind her’ as that ‘you can’t keep thinking about illness’.

Chapter 4 - Margaret’s illness-. Eighteen months after Malcolm’s stroke, Margaret became acutely ill and spent six weeks being treated in an intensive care unit close to their home. This significant factor was included at this stage in the evolution of the life story script as both she and Malcolm recognised that her illness, and slow but full recovery, was a major event in their relationship and life at home. Dining the early stage of his recovery, Malcolm’s fear of a further stroke and his willingness to discuss its symptoms and effects with ‘anyone who would listen to him’ frustrated Margaret as she considered he should now put the stroke behind him and not talk about it. Following Margaret’s illness, Malcolm recognised that his fear and preoccupation with experiencing another stroke had to be set aside: T don’t really think about the stroke now’. Margaret subsequently revealed that ‘in a funny sort of way, my being ill has helped him’ an analysis seen in Malcolm’s response when he said:

I feel fine now. I do everything for her. I do the washing, ironing, all my own food. I do Margaret’s food for her.

As Margaret required percutaneous endoscopic gastrostomy (PEG) feeding, Malcolm highlighted how his wife’s illness had marked a return to his prestroke life pattern of role performance. A state of affairs Malcolm was more than comfortable with.

Chapter 5 - Aftermath of stroke: Malcolm’s final chapter related to how his prestroke interests in life had been ‘taken away’ from him, revealing that ‘my interest has gone with everything’. The stroke impacted on his role identity in many ways, such as being unable to carry out all the ‘handyman’ duties he would normally perform, including decorating and garden maintenance. Malcolm also felt he was failing as a husband and as a father in being unable to cany out maintenance work at his daughter’s business and in providing practical support to his elderly cousin who lived on a farm. A significant impact was also on his relationship with his grandchildren, as Malcolm was unable to drive them to sports events and suchlike and then Malcolm lost confidence in his ability to drive altogether.

At the conclusion of the chaptered life stoiy script, Malcolm highlighted how his previous fear of having another stroke was a theme that permeated his whole sense of being a stroke survivor.

Centre stage diagramming: Malcolm and Margaret’s ‘stroke circle’ and ‘boundary fence’

Following die completion of the chaptered life stoiy script, Malcolm began to visually produce a series of centre stage diagrams that represented ‘what was centre stage in his life’. The centre stage diagrams represented his life both before and after his stroke and mapped over nearly three years. The centre stage diagrams became a visual representation that occurred spontaneously as Malcolm sought to describe Iris stroke in ways that were meaningful to him at that moment in time. This resulted in a cycle of four iterative diagrams as part of a longitudinal pr ocess of engagement and co-construction. Tire ‘what is centre stage in my life’ diagrams were all initially hand-drawn at home (see Figures 5.1a and 5.1b as an example - and note the reference to stroke in a circle) and annotated with positioned text and shapes. Each produced centre stage diagr am was then redrawn on a computer and agreed as a finalised version.

At the heart of this analytic process was positioning theory (Hand and van Langenliove, 1999; Hand et al., 2009). It details a process of meaning-construction derived from perceived and lived dirties and rights which emanate from cognitive processes. Importantly, these are dynamic processes being contextually and temporally bound. Such an analysis presents people as socially positioned in a particular context and performing certain social actions and practices, with meaning delineated through storylines embedded in discourse and actions (O’Connor, 2007; Нэпе et al., 2009). For Josie, positioning analysis enabled her to work with Malcolm and Margaret to understand how they framed the meaning of stroke, survivorship and adjustment within their lives and also why they adopted certain positions and how these were re-positioned over time.

Time point 1 (T1) – What is centre stage in my life: ‘Doing things’

This next Figure (5.2) diagrams what was centre stage in Malcolm’s life before the stroke (Tl) and was based on having a significant degree of physical strength and fitness

As seen in Figure 5.2, Malcolm focused on enjoying an active, physical life of ‘doing things’ to support his family that gave him a sense of purpose to his life and in this way was firmly linked to ‘relationships’. He related with pride his close relationship with his grandchildren and shared with Josie how they were getting on at school, what they did with their friends and how he would regularly ‘taxi’ them to activities, happy to run them around and be an integral part of their lives. Malcolm also helped his daughter and son-in-law with their business and revealed how much he enjoyed -and thrived - on helping out his family. Yet, at the centre of these family relationships, was his successful marriage to Margaret, a partnership that saw him working with Margaret on the household tasks and supporting their family as well as Margaret’s love of travelling abroad. In this way, ‘doing things’ was positioned right at the centre of the page with the overlapping circles emphasising their importance to Malcolm, as denoted with a positive (+) sign.

Time point 2 (T2) – What is centre stage in my life: ‘Changed by stroke’

The next centre stage diagram mapped Malcolm’s recollections six to eight months after his stroke (T2) and created a very' different picture as to what was now centre stage in his life (Figure 5.3)

Stroke survivorship and recovery 97

(a) Example of Malcolm diagramming in the field

Figure 5.1 (a) Example of Malcolm diagramming in the field: what is centre stage in my life;

(b) Example of Malcolm diagramming in the field: what is centre stage in my life.

Doing things (Tl)

Figure 5.2 Doing things (Tl).

Changed by stroke (T2)

Figure 5.3 Changed by stroke (T2).

As seen in Figure 5.3, Malcolm revealed that the activities and lifestyle he enjoyed before the stroke had been ‘taken away’ by the stroke. Malcolm used an outdoors analogy for his stroke experience by describing the effect of stroke as a ‘boundary fence’ that restrained him. Figure 5.3 represented aspects of Malcolm’s pre-stroke life now caught up in the negative stroke experience, a life changed by stroke, and Malcolm explained that ‘fear’ of a further stroke sat at the centre of his world - and the page on the centre stage diagram. He believed that stroke had ended his life as he knew it: ‘It’s the same as finished my life, it’s all finished’ and this perception of ‘a life finished’ clarified for him that his positive life of ‘doing things’ had now been forever changed by his stroke. Together with the fear and the perception of a life finished, Malcolm considered he was ‘not bothered’ about some aspects of his life that were important to him before his stroke. Malcolm recognised that he had become uncaring about his appearance, his personal hygiene and in carrying out domestic chores to keep his home tidy. He had also noted a lack of self-motivation and apathy to leave his house or to go out with friends as he described at the time of producing this centre stage diagram: T haven’t bothered with them. And I used to enjoy it you know ... going out with them’.

Before the stroke, the positive influence of family was central to Malcolm’s well-being and his pattern of helping out whenever possible was integral to this belief structure. The realisation of the loss of this aspect of life resulted in him seeing family as a ‘negative’ in a life changed by stroke and the ‘boundary fence’ it created. In other words, family acted as a reminder of what he had lost and feared, as seen at the centre of his ‘stroke circle’, and which prevented him from engaging in a pattern of life and activity that he had previously enjoyed. Yet positive aspects to his life still existed during the early post-stroke months and signalled that both negative and positive aspects of life could sit together within lived experience, as exemplified in 1 family'. A returning physical independence and the love and motivation of his wife gave him hope. In this way, and as seen in Figure 5.3 at the edge of the ‘stroke circle’, Malcolm directed that the positive element of independence was slowly returning along with his motivation. A sign of change to come.

Time point 3 (T3) – What is centre stage in my life: ‘Floating free’

The construction of the third ‘what is centre stage in my life’ diagram (T3) was completed 18 months after Malcolm’s stroke and is shown in Figure 5.4.

As can be seen. Figure 5.4 reveals a less negative influence on his everyday life with positive pre-stroke patterns of activity returning, including his sense of purpose. Malcolm felt strongly that the positive aspects of his life should be represented as outside the influence of stroke or at least beginning to move out of the stroke effects. He visualised that some positive aspects of life should be ‘floating free’ from his ‘stroke circle’, beginning to escape from the influence of stroke and the self-imposed/constmcted ‘boundary fence’. For instance, he had staxted to enjoy an adapted social life, his feelings of apathy had declined and he was able to

S.4 Floating free (T3)

Figure S.4 Floating free (T3).

help out his family once again. Some aspects of his life were situated outside of the ‘boundary fence’, such as holidays, friends and driving with confidence denoted as wholly positive (+). He believed that he had achieved recovery in these aspects of his life. Whilst life had changed and he had needed to adapt, Malcohn did this by going out less often, driving shorter distances and doing less physical work.

Significantly, fear of a second stroke continued to emerge as a negative part of his life and Malcohn was adamant that it should remain highlighted at the centre of his ‘stroke circle’ and denoted with a negative character (-). He also revealed that any symptoms he observed in his everyday life, for example, a painful knee that reduced his mobility, would inevitably bring on the fear that it was stroke related. This began a train of negative thoughts that led him to imagining a stroke could happen again and set back his long-term recovery as he explained: ‘But I suppose it might, it might not be the stroke, it could be rheumatic or something couldn’t it, that’s the only thing’. Turning such negative thoughts into positive actions continued to provide a challenge for Malcolm throughout the period of engagement.

Time point 4 (T4) – What is centre stage in my life: ‘Margaret’s illness’

As uncovered in the chaptered life stoiy script, during the late months of 2007, Margaret became seriously ill with pneumonia and sepsis and spent time as an

Stroke survivorship and recovery IОI

inpatient on the intensive care unit and acute respiratory ward of their local district general hospital, and later in a community hospital. Margaret’s time in hospital spanned a number of months and for Malcolm, Margaret’s illness represented a turning point in his recovery. At this point, two years and eight months after his stroke (T4), Malcolm’s practical and emotional circumstances were forced to change as he was now alone in his home and needed to continue with his day-to- day routine without the support of Margaret (see Figure 5.5).

Malcolm viewed Margaret’s illness as transformative: ‘I didn’t think about the stroke when Margaret was ill, I saw her every day’. Within the refraining of what lay within and outside the ‘boundary fence’, Malcolm revealed that his recovery from the effects of stroke had been ‘propelled’ by Margaret’s illness and he now felt empowered. The only aspect of life still negative for Malcolm after the stroke was fear of its reoccurrence, a constant presence in the interviewing and in the post-stroke centre stage diagrams. However, Malcolm considered that he now viewed this fear in a different way, a way that was begiiming to move out from the centre of the ‘stroke circle’ and towards its edge, as he shared: T do think about stroke but only to wonder if it will happen again, it might be fear I suppose’. On this disclosure, Josie and Malcolm discussed how to best represent this feeling in a diagram and Malcolm directed that fear, although beginning to move from the

S Margaret’s illness (T4)

Figure 5.S Margaret’s illness (T4).

centre of his ‘stroke circle’, should still be denoted with a negative character (-). He revealed and articulated through his diagramming that although his experience of living with stroke for nearly three years had seen adaptation and recovery, he recognised that he was not yet free of its negative effects.

Insights gained

The ‘stroke circle’ and its meaning/fimctioning as a ‘boundary fence’ for Malcolm and Margaret was an important description of stroke survivorship as lived experience. This process of discovery was led by Malcolm as the person living with a stroke and the ‘stroke circle’ provided a vivid representation of a dynamic process of recovery from the immediate and long-term aftermath of a stroke. As part of the participatory case study work and emergent personal theory', the adopted methods helped to empower Malcolm and Margaret to develop an authentic and reflexive account, working with Josie as the academic co-researcher to give voice to their life with stroke. The act of diagramming with Josie was also described as a turning point by Malcolm and Margaret as it enabled them to svtrface and visualise their emotional, social, psychological and physical response to the stroke event and the meaning of survivorship for them cast as breaching the ‘boundary fence’. The ‘stroke circle' seen in Figures 5.3, 5.4 and 5.5 in this chapter were subsequently transposed as a key centre stage diagrams for other participants in the wider study to ‘cast their story in their own terms’ (Chatmaz, 2000, p.525). Although the language was changed by other participants to reflect their narrative positioning and life experience, the ‘stroke circle’ remained a consistent motif in the data set, for instance, with the ‘boundary fence’ morphing into ‘the edge of a pool’ for another participant in the wider study (Wray, 2014).

As part of this process, co-research participants identified adaptations and changes as part of their experiences, refraining ‘recovery’ as a complex biographical journey moving within and outside the ‘stroke circle’ and its effects, reflecting positive and negative experiences and elements of life as Josie noted at the time:

The stroke experience or circle of stroke can be all encompassing immediately post-stroke. Adaptation and recovery appears to allow for the positives to push against the circle and break through to become free floating again.

As part of the participatory case study work with people such as Malcolm and Margaret, Josie also recognised her own limited understanding of the stroke experience as a clinician. However, she felt privileged to gain access to their perspective over a prolonged period of time, resulting in a sense of empowerment through leaming-in-action as part of the participatory research process and thereby enriching her clinical knowledge. Moreover, as Stake (1998) has noted, a case study ‘draws attention to the question of what specifically can be learned from the single case’ (p.86). During Josie’s overall study, intrinsic insight into individual cases, such as those reported in this chapter and involving Malcolm and Margaret via their shared personal theory of a ‘stroke circle’, provided a means to develop a collective account across cases, an issue we will pick up in Chapter 8. Capturing intrinsic and collective complexity is a next-step development in the presentation of participatory case study work.

Ethical issues

The main ethical issues of the reported participatory case study focused on an initial study design that involved people living with stroke who are defined as ‘vulnerable adults’. Consequently, Josie as the academic co-researcher and Sion as the main PhD supervisor had ethical responsibilities which, at the time, were framed under the Research Governance Framework for Health and Social Care (Welsh Assembly, 2001). However, in many respects, these were surface ethical issues and the deeper ethical concerns for Josie focused on how best to engage in participatory case study work that involved an emancipatory approach to cotheorising and co-learning alongside people about their stroke and survivorship stoiies, whilst still operating as a practitioner-researcher. A further ethical issue was maintaining an emancipator)' and empowering stance with participants such as Malcolm and Margaret as part of a protracted longitudinal process.

Addressing these deeper ethical issues required relationship building and its maintenance over a prolonged peiiod of time - three years in the case of Malcolm and Margaret - and the completion of ethical fieldwork. At the core of the ethical issues regarding relationships between stroke survivors in the study and Josie was her practitioner-researcher role. As noted in the classic text by Burgess (1984), the relationship between researchers and participants may vary in terms of power and agency, resulting in different degrees of control and direction, ranging from a ‘noblesse oblige’, ‘going native’ to an ‘advocate’ model (p. 193). At its core is the positioning of the researcher and the latent issue of power and agency within the overall frame of the study. In this context, Josie centred her work on a set of principles for centre stage diagramming in participatory case study work (see Table 5.2), resulting in practical steps such as using the technique of ‘exchanging stoiies’ to create equity and an egalitarian view of doing research.

Applying the principles in Table 5.2 in practice with Malcolm and Margaret was evidenced through the reflexive memo-building process, as noted earlier in the chapter. This methodological stance was also important in addressing these deeper ethical issues, with the participator)' approach and constructivist approach advocated by Kathy Charmaz enabling the study to empower participants such as Malcolm and Margaret to explore their stoiy of survivorship and dig ‘under the skin’ of surface meanings (Charmaz, 2000, p.525).

In addition, qualitative inquiry is a puzzle-solving activity and data from some participants may contribute more to the theoretical development of the study (Glaser, 1978; Morse, 2003). In case study work of all types, there are hidden ethical issues embedded in the researcher’s decision-making, focused on the shift from the intrinsic to the instrumental and subsequently collective cases (Stake,

Table 5.2 Centre Stage Diagramming: Principles and Values

Embedded values and principles

Modified criteria for co-construction work based on Keady et al. (2007)


Requires prolonged and sustained engagement


Requires the creation of a shared and mutually respectful relationship


Based on biographical work focused on past-present narratives for all actors


To find a safe place to engage in working together for both/all actors, making opportunities available for joint working


Equal access to research props (such as centre stage diagramming technique) for both/all actors in order to facilitate co-construction

Ethical safeguards

Practitioner-researcher demonstrates sensitivity towards being with vulnerable groups and their evolving needs over time


Ability to conceptualise lived experience, be open and reflexive to change over time, empowering all actors to be involved in a creative and emancipatory process to give voice to their experiences


Through a dialogue with supervisory team ensure preparation for participatory work and reflect on what may be required to support/mentor all actors

2000; Stake, 2005). This focuses on the decision-making processes and the degree of direction by the researcher in guiding the centre staging method in the study, as shared in this study and chapter.

Issues of reflexivity

As highlighted under the previous heading, Josie’s role as a practitioner- researcher was crucial for partnership working and there were dimensions of power and agency that needed to be considered. However, a further consideration is the importance of the practitioner-researcher role in terms of interpretation and the reflexive research approach in participatory case study work. Indeed, almost 30 years ago, Steedman (cited in Steir, 1991) argued that the issue of interpretation is a moral one. In a similar way, the seminal work of Steir (1991) highlighted that the reflexive research act is hr essence one of‘mirroring’, a process which for Josie was important in ensvtring authenticity as part of the participatory approach. As such, the mutual creation of meaning had an impact on the researcher and the participant, with ‘mirroring’ being important in shaping interpretation and meaning-making by all parties involved in the process.

Josie viewed the practitioner-researcher role as both a strength and a weakness within the study. It was positive as it informed theoretical sensitivity (Channaz, 2000; 2006) prior to co-researching, but it also presented a challenge insofar as there were issues around power and agency. Josie anchored her participatory' case study work as a practitioner-researcher using diagramming as a mechanism to enable a ‘bottom-up’ process to emerge that empowered the voices of others, such as Malcolm and Margaret. In the event, this led Malcolm and Margaret to conceptually develop the ‘stroke circle’ as their personal theory which had considerable resonance for others in the study and, it could be argued, for the stroke field as a whole. By focusing on the co-creative process drawn from lived experience, Josie avoided the well-established pitfall of researchers using ‘standard notation in the form of the categories, definitions’ (Steir, 1991, p.175) to describe participant accounts, despite claims of reflexive practice. In contrast, the development of the ‘stroke circle’ by Malcolm and Margaret, and built upon by other stroke survivors involved in the wider study, provided a tailored notation that accounted for different voices emerging and which represented a plethora of different experiences.

Discussion and conclusion

Through the conceptual power and utility of Malcolm and Margaret’s stoiy and the emergence of the ‘stroke circle’ from the participatory case study work, stroke survivorship was revealed as a complex and dynamic process embedded in learning and as a personal response to the stroke experience. Their account alongside five other collective and longitudinal cases enabled Josie to develop an overarching and collective ‘stroke circle’ theory' that provided an explanatory framework that mapped life-patterns, which shaped the development of stroke survivorship. The vivid language and visualisation of Malcolm and Margaret’s lifeworld occurred spontaneously as they sought to describe their stroke experience in a way that was meaningful to them, conveying to Josie the effect of the stroke. The other participants in the wider study echoed the process of visualisation with the ‘stroke circle’ represented as being ‘in a pool’, ‘a bubble’, ‘a dark tunnel’ and, as reported in this chapter, as a ‘boundary fence’. It was clear the ‘stroke circle’ as a bubble, a tunnel or boundary' fence embodied the experience as an entity that surrounded and immersed the person. All the participants in the wider study, including Malcolm and Margaret, viewed stroke as something to be ‘escaped from’ and the movement over time from the centre of the ‘stroke circle’ (and the stroke’s most devastating effects) towards and over the edge of the circle started a process of recovery as part of survivorship. Across all the participatory case studies, this was voiced and imagined in diagramming as ‘breaking flee’, ‘getting over the edge’ or getting stroke to ‘release its grip’.

As part of the participatory' case study design, Josie developed an innovative approach that not only blended with constructivist grounded theory (Charmaz, 2006) but also used positioning analysis (Нэпе el al., 2009) and centre stage diagramming (Williams and Keady, 2012a,b) to ‘open up’ the conversation between Josie, Malcolm and Margaret as co-researchers. Combined, these collaborative and empowering approaches acted as a lens for learning and action within the arena of stroke survivorship. However, we would contend that these combined approaches can be used for other long-term conditions and to develop participatory case study work that has the potential to develop new conceptual knowledge

from the lifeworld and experiences of those that live with its impact day by day.

Key learning points from the method used

  • • Participatory case study provided a robust framing for understanding the nuances of stroke survivorship when blended with constructivist grounded theory. It enabled the intrinsic experience of stroke survivorship to be detailed and represented in the participant co-researcher’s own terms and personal theory development.
  • • The use of diagramming within participatory case study, drawn fr om a constructivist grounded theory tradition, combined with centre staging techniques, enabled the voice of Malcolm and Margaret to be articulated clearly. It also facilitated the development of a clear learning and action product in the form of the ‘stroke circle’.
  • • The use of positioning analysis as part of the study design was an important feature of supporting the use of centre stage diagramming, enabling Josie, Malcolm and Margaret to not only generate but also make sense of the visual representations of the stroke experience. It provided a clear framework for mapping the change in positions.
  • • The development of the ‘stroke circle’ with Malcolm and Margaret highlights the value of the intrinsic case and its potential in informing the collective case. Within the overall study, the ‘stroke circle’ became the key motif for all participants and was built upon and modified as part of a final representation of stroke survivorship, centred on a participatory approach to support an authentic account and collective theory of lived experience.

Three key references

Нэпе, R., Moghaddam, M.F., Pilerton Caimie, T., Rothbart, D. and Sabat, S.R. (2009). Recent advances in positioning theory. Theory and Psychology, 19(1): 5-31.

Hole, E., Stubbs, B., Roskell, C. and Soundy A. (2014). The patients experience of psychosocial process that influences identity following stroke rehabilitation: A metaethnography. The Scientific World Journal, Article ID 349151. 1-13. http://dx.doi. org/10.1155/2014/349151.

Williams, S. and Keady, J. (2012). Mapping the onset of Alzheimer’s disease in late-stage Parkinson’s disease through centre stage diagramming: A single case study report. Journal of Aging Research, 26: 204-213.

A recommended future reading list

Atler, K. (2016). The experiences of everyday activities post stroke. Disability and Rehabilitation, 38(8): 781-788.

Chen, T., Zhang, B., Deng, Y., Fan, J.-G., Zhang, L. and Song, F. (2019). Long-term unmet needs after stroke: Systematic review of evidence from survey studies. BMJ Open, 9(5): e028137. doi: 10.1136/bmjopeu-2018-028137

Satink, T., Josephsson, S., Jajec, J., Cup, E.FI.C., De Swart, B.J.M. and Nijhuis-Yan der Sanden, M.W.G. (2016). Self-management develops through doing of everyday activities - a longitudinal qualitative study of stroke survivors during two years post stroke. BMC Neurology, 16: 221.

Skogland, E., Westerlind, E., Persson, H.C. and Stmnerhagen, ICS. (2019). Self-perceived impact of stroke: A longitudinal comparison between one and five years post-stroke. Journal of Rehabilitation Medicine, 51: 660-664.


Amtzen, C., Borg, T. and Hamran, T. (2015). Long-term recovery trajectory after stroke: An ongoing negotiation between body, participation and self. Disability & Rehabilitation, 37(18): 1626-1634.

Bendz, M. (2003). The first year of rehabilitation after a stroke-from two perspectives. Scandinavian Journal of Caring Sciences, 17: 215-222.

Burgess, R.G. (1984). In the field: An introduction to field research. London: George Allen & Unwin.

Chaimaz, K. (2000). Constructivist and objectivist grounded theory. In Denzin, N.K. & Lincoln, Y. (eds.), Handbook of qualitative research, Second edition (pp. 509-535). Thousand Oaks, CA: SAGE.

Chaimaz, K. (2006). Constructing grounded theoiy: A practical guide through qualitative analysis. London: SAGE.

Ellis-Hill, C.S. and Horn, S. (2000). Change in identity and self- concept: A new theoretical approach to recovery following a stroke. Clinical Rehabilitation, 14: 279-287.

Glaser, B.G. (1978). Theoretical sensitivity. Mill Valley, CA: Sociology Press.

Gubrium, J.R. (1993). Speaking of life: Horizons of meaning for nursing home residents. Newbury Park, CA: SAGE.

Harre, R., Moghaddam, M.F., Pilerton Caimie, T., Rothbart, D. and Sabat, S.R. (2009). Recent advances in positioning theoiy. Theoiy and Psychology, 19(1): 5-31.

Harre, R. and van Langenhove, L. (1999). Positioning theoiy. Oxford: Blackwell Publishing.

Haslam, C., Holme., Haslam, S.A., Iver, A., Jetten, J. and Williams, W.H. (2008). Maintaining group memberships: Social identity continuity predicts well-being after stroke. Neuropsychological Rehabilitation, 18(5-6): 671-691.

Hole, E., Stubbs, B., Roskell, C. and Soundy A. (2014). The patients experience of psychosocial process that influences identity following stroke rehabilitation: A metaethnography. The Scientific World Journal, ArticlelD 349151. 1-13. http://dx.doi. org/10.1155/2014/349151

ICeady, J., Williams, S. and Hughes-Robeits, J. (2007). ‘Making Mistakes’: Using co-constmcted inquiry to illuminate meaning and relationships in the early adjustment to Alzheimer’s disease - a single case study approach. Dementia: The International Journal of Social Research and Practice, 6(3): 343-364.

Kirkevold, M., Kildal Bragstad, L., Bronken, B.A. et al. (2018). Promoting psychosocial well-being following stroke: Study protocol for a randomized, controlled trial. BMC Psychology’, 6: 12, https://doi.org/10.1186/s40359-018-0223-6

Kirkevold, M., Martinsen, R., Bronken, B.A. et al. (2014). Promoting psychosocial wellbeing following stroke using narratives and guided self-determination: A feasibility study. BMC Psychology’, 2: 4, https://doi.org/10.1186/2050-7283-2-4

McICevitt, C., Fudge, N., Redfem, J., Sheldenkar, A., Crichton, S., Rudd, A.R., Forster, A., Young, J„ Nazareth, L, Silver, L.E., RothweU, P.M. and Wolfe, C.D. (2011). Self- repoited long-teim needs after stroke. Stroke, 42(5): 1398-1403.

Morse, J.M. (2003). Principles of mixed and multi-method method research design. In Tashakkori, A. and Teddlie, C. (eds.), Handbook of mixed method (pp. 189-208). Thousand Oaks, CA: SAGE.

O’Connor, D.L. (2007). Self-identifying as a caregiver: Exploring the positioning process. Journal of Aging Studies, 21: 165-174.

Reed, J. and Procter, S. (1995). Practitioner research in health care - the inside stoty. London: Chapman and Hall.

Rudd, A.G., Hoffman, A., Paley, L. and Bray, B. (2018). 20 years of researching stroke through audit. Clinical Rehabilitation, 32(8): 997-1006.

Sadler, E., Sane, S., Tinker, A., Bhalla, A. and Me Kevitt, C. (2016). Developing a novel peer support intervention to promote resilience after stroke. Health and Social Care in the Community, 25(5): 1590-1600.

Stake, R.E. (1998). Case studies. In Denzin, N.K. and Lincoln, Y.S. (eds.), Strategies of qualitative inquity (pp. 86-109). Thousand Oaks, CA: SAGE.

Stake, R.E. (2000). Case studies. In Denzin, N.K. and Lincoln, Y.S. (eds.), Handbook of qualitative research (pp. 236-247). Thousand Oaks, CA: SAGE.

Stake, R.E. (2005). Qualitative case studies. In Denzin, N.K. and Lincoln, Y.S. (eds.), The sage handbook of qualitative research (pp. 443-466). Thousand Oaks, CA: SAGE.

Steir, F. (1991). Research and reflexivity. London: SAGE.

Taylor, G., Todman, J. and Broomfield, N. (2011). Post-stroke emotional adjustment: A modified social cognitive transition model. Neuropsychological Rehabilitation, 21: 808-824.

Welsh Assembly. (2001). Research governance framework for health and social care, Second Edition. http://www.wales.nhs.uk/sites3/Documents/952/Research%20Gove mance%20Framework%202009%20%28English%291.pdf (Accessed 15 April 2020).

Williams, S. and Keady, J. (2012a). Centre stage diagrams: A new method to develop constructivist grounded theory - late-stage Parkinson’s disease as a case exemplar. Qualitative Research Journal, 12(2): 218-238.

Williams, S. and Keady, J. (2012b). Mapping the onset of Alzheimer’s disease in late-stage Parkinson’s disease through centre stage diagramming: A single case study report. Journal of Aging Research, 26: 204-213.

Wray, J. (2014). Discovering stroke circles and lines of recovety: An alternative narrative of adjustment in the lives of stroke survivors - a constructivist grounded theoiy study. PhD Thesis. Bangor University, Bangor.

< Prev   CONTENTS   Source   Next >