‘The man on the cross’: Uncovering the body, faith and reflexive self in late-stage chronic obstructive pulmonary disease
‘The man on the cross’
Uncovering the body, faith and reflexive self in late-stage chronic obstructive pulmonary disease
Sion Williams and John Keady
Introduction
Using the guiding principles of participatory case study work informed by centre stage diagrams, this chapter details the individual stoiy of Graham in adjusting to living with late-stage chronic obstructive pulmonary disease (COPD). Graham’s participatory case study particularly focuses on the shaping of a co-constmcted narrative about what breathlessness and identity meant to him and how he understood his future, which included preparing for his own death. The participatory case study is unusual in the sense of the deeply personal account of living with COPD that emerged from the encounters between Graham and Sion and the potential for practice development as a consequence, such as focusing on masculinity and the body. However, before this is approached, the chapter will start by focusing upon the context of COPD before outlining the initial study design which located Graham’s single participatory case within a broader study on late- stage COPD. Following this, the chapter will use three centre stage diagrams to map the textured account of Graham’s lived experience before drawing the analysis together with a photograph of Graham which was taken by his peers at a local gym and was titled ‘the man on the cross’. The chapter will end with a reflexive account and a discussion and conclusion.
What is COPD?
The area of adjustment and the lived experience of people with COPD remains an area of interest in the policy, practice and research literature. Current research indicates that COPD is a leading international cause of death and disability (Fletcher et al., 2011) with 210 million people worldwide, resulting in social, psychological and economic impacts. Indeed, the British Lung Foundation (2020) estimates that there are currently around 1.2 million people with COPD in the United Kingdom, being the second most common cause of lung disease. COPD is likely to be amongst the top seven leading causes of disability worldwide by 2030, which will have a concomitant effect on quality of life, independence and a range of symptoms (Gabriel et al., 2014). The Global Initiative for Chronic Obstructive
Lung Disease [GOLD] system classifies people with COPD based on their degree of airflow limitation (obstruction) with stage 1 being ‘mild’, stage 2 ‘moderate’, stage 3 ‘severe’ and stage 4 ‘very severe’, with an annual report updating practice benchmarks for practice (Patel et al., 2019). Usually, those individuals in GOLD stage 4 require long-term oxygen therapy (National Collaborating Centre for Chronic Conditions, 2004; Royal College of Physicians, 2004; National Institute for Health and Clinical Excellence [NICE], 2010). In this chapter, we will refer to this phase as late-stage COPD.
There has been increasing interest dining the past decade in mapping and understanding how people with COPD adjust and manage what is a complex condition (Piimock et al., 2011; Disler et al., 2014; Sirndh and Ekstroin, 2016; Jarab et ah, 2018). The recent review by Gardiner el al. (2018) provides a key synthesis of the evidence-base around life with COPD and uncovered a broad range of domains embedded in the research literature that encompass the experience of people with COPD. In their comprehensive review, the breadth of domains involved with the lived experience of COPD are highlighted, as well as its complexity, ranging across: understanding COPD; managing symptoms and medication; healthy lifestyle; managing feelings and worries; living positively with COPD; thinking about the future; anxiety and depression; practical support; finance work and housing; families and close relationships; social and recreational life; independence; and navigating services. At times, the evidence provides a rather incomplete picture, with particular deficits surfaced in the domain of spiritual perspectives as part of palliative care (Gardiner et al., 2018).
Overall, the in-depth exploration of people’s emic experiences of COPD remains an under-examined area (Gabiiel et al, 2014; Rzadkiewicz et al., 2016), with the need for more empirical studies to understand the complex interplay of factors and the breadth of impacts (Gabriel et al., 2014; Gardiner et al., 2018). Indeed, Gardiner et al. (2018) signals a new approach to extending the scope of research beyond mapping need and the dominant focus on the ‘management’ of distressing symptoms, such as dyspnoea, fatigue and productive sputum (Putnran- Casdorph and McCome, 2009). Increasingly, research studies have highlighted the need to acknowledge the complexity of COPD in terms of social impacts as part of relationships and coping, particularly in managing distress and quality of life, including how people develop psychological, emotional and modes of adjustment during chronic and other phases of the disease (Meier et al., 2011; Gabriel et al., 2014; Miravitlles and Ribera, 2017).
The participatory case study shared in this chapter explores the experience of Graham who, at the time of data collection, lived with GOLD stage 4 COPD. Although the participatory case study was completed in 2011, the issues surfaced by Graham as a person living with late-stage COPD have a contemporary resonance with the emergent themes from the reviews by Miravitlles and Ribera (2017) and Gardiner et al. (2018). It also presents a particular insight into how the evidence-base can be shaped by empowering people living with COPD to provide an in-depth account of lived experience, through the lens of participatory case study work. The story of Graham as a participatory case study is drawn from a wider study on COPD conducted by Sion which aimed to identify how the perspective of older people living with late-stage COPD related to those of the multidisciplinary professionals supporting them within both a primary and secondary respiratory' care setting.
Study design
This study was funded as part of Sion’s ‘Research Capacity Building and Collaboration (RCBC) Wales Career Scientist Award’ (http://www.rcbcwales. org.uk/} and where John acted as a point of contact during the one-year award. The participatory case study work was conducted over 12 months between 2010 and 2011 and recruited 19 older people with COPD and their care partners from two Health Boards in Wales. Participants were respectively defined as living with moderate (FEV1 30-49%) or severe (FEV<30%) COPD based on the criteria of the MRC Dyspnoea Scale (NICE, 2004; Steuton, 2008). The aims of the study were twofold. First, to examine how community and hospital-based support maintained stability and supported the management of the decline of older people with COPD (and their families) based on shared decision-making. Second, to explore how older people with COPD and their families adjust to the GOLD staging transitions focused on increasing disabilities and reduced independence, in particular, the experience of dyspnoea, fatigue and the exacerbations of symptoms. It is the second aim of the study that forms the substance of this chapter and the sub-set of the data that focused on the lived experience of late-stage COPD.
The study was framed as a participatory case study design, aligned with centre stage diagramming (Williams and Ready, 2012a,b). The study took place in both North and South Wales and the interview process with the multidisciplinary respiratory' team focused on organisational and professional issues as well as the interface of sendees with people with COPD and families, and the facilitation of self-management. In contrast, the diagram-led interviews involving older people with COPD and their families centred on understanding self-management, living with decline and distressing symptoms as well as their relationship to respiratory and other service providers.
All participants completed centre stage diagrams using the three questions: ‘who is centre stage in my life’; ‘what is centre stage in my life’; and ‘where is centre stage in my life’. Centre stage diagrams are based in part on positioning theory (Harre et al. ,1999) and completed through a set of biographical interviews. Drama language is used as a representational metaphor to engage in a collaborative exercise and to make the interview as democratic as possible in its conduct (Williams and Ready, 2012a,b). In the method, and following key prompts, the centre of the page acts as the centre of the stage where the most salient objects to the persons’ diagramming, for example, people/symptoms/events/feelings/loc ality, are placed ‘at the centre’ with related objects spatially positioned as close to, or as far away from, the centre as the participants desire. So, overlapping circles at the centre of the stage when participants position key relationships in their lives usually represent closeness or interdependence. Similarly, and unless the paxticipant(s) indicates otherwise, the further away an object is positioned from the centre of the page/stage, the less impact it currently has on events ‘at the centre’; however, this should not always imply that objects positioned ‘at the margins’ of the page/stage lack significance or meaning to those completing the centre stage diagrams. On the contrary, participants can, and do, link up these distanced objects in some way by positioning, for example, a broken line from the centre to the distanced object(s) in question to indicate a fractured or lost relationship.
Centre stage diagramming, therefore, is a dynamic and creative process that is currently undertaken with different coloured pens, paper (usually A3 size) and gives ‘control’ over the positioning of objects on the page/stage to the participant co-researchers. The participant co-researchers use of colour in centre stage diagramming can be important, as can the shapes used to denote meaning to an object. The centre stage diagram can also be aimotated by participant co-researchers to describe what is happening and/or to record a significant thought about what they are experiencing or have experienced in the past. At times, the act of positioning objects on a stage and their naming/colouring can be a confronting experience and act as a stark visual reminder about how life has changed, or has been lived, over the preceding months or year(s). Analysis of the centre stage diagrams is a collaborative and co-constmcted process that takes place between the academic and participant co-researchers who go ‘back and forth’ between the separate time (T) points at each of the ‘who’ ‘what’ and ‘where’ diagr ams to search for areas of significance (or at times insignificance) that hold meaning, explanatory' resonance and power for those taking part. It is this agreement between the academic and participant co-researchers which facilitates communication of a staged position. Alongside the interviews and diagramming, Sion used disposable cameras with participants, asking them to take photographs of what they considered to be key anchoring points in their life with COPD.
We will now turn our attention to the participatory case study involving Graham, his use of centre stage diagramming in late-stage COPD and the highly personal approach to analysis and personal theory representation through a photograph that was taken by friends at his local gym. This photograph communicated the overarching narrative arc and storyline of his lived experience with late-stage COPD - what has been named and termed as ‘the man on the cross’.
Graham: A life with late-stage COPD
Graham had been diagnosed for 12 years at the time of the first interview, with the turning point emerging when he realised, whilst working to support people as part of a ‘hontecare’ role, that he was ill. As Graham explained to Sion during their first encounter: T suddenly realised I was more sick than the people I was looking after so I went to the doctors’. After an initial diagnosis of asthma,
Graham was subsequently confirmed as having COPD. He had been a smoker for 40 years and described his COPD as ‘payback time’; however, smoking had been an integral part of his life and he was aware of the risks. Graham shared that there were ten children in his family, and they all smoked, with his mother smoking ‘60 a day’ and yet living until she was 90 years old. Graham characterised himself as ‘a light smoker, not a heavy smoker, my wife was a heavy smoker but she’s gone to a light smoker ... still smokes but she has to go outdoors’. The onset of Graham’s COPD had been unexpected and rapid based on a severe exacerbation, as he explained to Sion:
Shortness of breath started with a Saturday about 11 years ago. My son came to visit and he said could he turn the television on to watch a rugby match and just then ahh [wheeze, breathlessness] it started-just as if he’s switched my breath off the same instant, just like that was the first what do you call - exacerbation I ever had. Came home from hospital and Dr [name] suggested rehab and going to the gym first, and doing an eight week course. That was nine years ago - couple of years doing nothing.
Before his recruitment into the study, Graham was experiencing increasing decline with repeated exacerbations and had to use oxygen 8-12 months prior to the first interview. He also had to use ambulatory' oxygen for the past six months, including during visits to the local gym: ‘My mate said this is really hardcore training [laughs]’. The catalyst for attending the gym was attending pulmonary rehabilitation sessions. In itself, this was a key transition in Graham’s experience of living with COPD as he was able to frame his sense of self more positively, as this extract from the interview data reveals:
Did not like myself you know. You go all puffy with steroids you know and I was nice looking. I am a vain creature [laughs]. So I started not going on very well with myself - had to buy bigger clothes and that, so I started going to gym and my health improved [long pauses with breathlessness and struggling to breathe]. Found I could walk longer and after three months going to gym I said to young trainer there: ‘I’d like to put some size on my legs as I have the skiimiest legs ever!’ Last thing I want to be seen in a swimming costume, so he said: ‘The only thing is weight training’, so I said: ‘Right I’ll do some weight training then’. So I have been weight training now for nine years.
This interview with Graham was striking from the outset and although his wife had been consented into the study to take part, Graham excluded her from the conversation. In fact, for each of their encounters, Sion and Graham sat at the kitchen table in Graham’s home. The only exception to this arrangement was early on during the first encounter when Graham struggled to his feet in front of Sion to show him the shape and contour of his amis and musculature. Throughout Sion’s time with Graham, it was noticeable that despite being in the midst of an exacerbation of his late-stage COPD, Graham insisted on continuing each interview and would not stop the conversation despite being very ill. During these encounters, Graham’s sentences emerged in a staccato fashion interspersed with severe breathlessness.
The initial discussion and diagramming focused on exploring ‘what’ and ‘who’ was centre stage for Graham. At the core of ‘what was centre stage in my life’ was breathlessness, as seen in Figure 3.1 and the nexus of cough, sputum, fatigue and movement difficulties that were embedded within the experience of living with a constant shortness of breath.
As seen in Figure 3.1, the trigger that worsened daily life, and the stability Graham sought, was the increasing occurrence of chest infections. He was therefore living through waves of exacerbations in the breathlessness and associated thick and choking sputum and cough which nested alongside increasing fatigue and poor movement. The cough and mucous were now constant ‘every morning’, and as a consequence, the difficulties of breathlessness forced Graham to plan any movement well in advance of its occurrence, including going to the toilet. Accordingly, daily life necessitated the balancing of a sense of control by regaining stability through planned activities. Interestingly, in Figure 3.1, part of Graham’s staging of his other conditions was positioned ‘off stage’ and in the background, including arthritis and heart failure. Yet, a defining characteristic of the centre stage diagramming was Graham’s positioning of himself as part of a dynamic process between learning and a positive attitude, even if that meant ‘only doing quizzes’ to keep his mind active.
As revealed in Figure 3.2, Graham’s depiction of ‘who was centre stage’ in his life pivoted on family and a close relationship with the specialist respiratory' nurse and helper, aligned with the GP and local hospital, which all moved closer together during periods of exacerbation.
Figure 3.1 What is centre stage in my life.
Figure 3.2 Who is centre stage in my life.
The emerging mapping from the ‘who is centre stage in my life’ diagram in Figure 3.2 revealed the complex impact on relationships, with the emergence of new people in Graham’s life, such as the specialist respirator}' nurse. However, the diagramming also highlighted the damaging effects of Graham’s late-stage COPD on his wife’s well-being and their relationship. This complex relational presentation was best captured in the following data captured when Graham was diagramming ‘who is centre stage in my life’:
Been very hard on her [his wife], she wants to help me all the time. Sometimes I want her help and sometimes I resent her help, so she’s never sure where to step in or step out, on a good day she helps me and I resent her and on a bad day she doesn’t help me and I resent her [laughs]. She gets it in the neck both ways. Naturally, she wants to help, she has loved me as her husband all these years and seen me go through it. On the other hand, it is too much and I want to manage a few things on my own.
Overall, and as seen in Figure 3.2, family was central to Graham’s life, his identity and his role within the family as a husband and grandfather. Graham perceived die COPD as direatening this identity and his str ong relational positioning with his wife, children and grandchildren. Indeed, Graham fervently resisted adopting an identity of a ‘wheelchair user’ which he believed threatened his masculinity and sense of independence.
During a later encounter with Sion, Graham diagrammed ‘where is centre stage in my life’ and the results of this process are shared in Figure 3.3. It was interesting in the diagramming that Graham placed ‘family’ - ‘gym’ - ‘religion’ on an equal (size) footing and linked the triadic/pyramid structure firmly together via strong bi-directional arrows.
Figure 3.3 Where is centre stage in my life.
Indeed, the diagramming in Figure 3.3 offers an innnediate insight into Graham’s everyday world and the places, spaces and people which were important to him. It also reveals his central belief structure in that all his actions and activities were done in order to ‘have a great life together’. It is also noticeable that late-stage COPD is not explicitly referenced in Figure 3.3, although it is implicitly acknowledged by Graham’s statement ‘don’t want to die’ and its positioning at the bottom right margin of the centre stage diagram: present but not directly linked to the triadic pyramid structure at the centre of the page. This addition is perhaps an acknowledgement that ‘where is centre stage in my life’ is not permanent and that death has the power to transform and break the physical bonds that exist in everyday life. This is an observation that is taken mto the overarching representational image and personal theory of living with late-stage COPD that Graham wanted to communicate, and it is shared in the next section.
Representational case analysis: The man on the cross
Duiing their time together, Sion and Graham also worked together to develop a representational model of Graham’s life with late-stage COPD, which focused on staying independent and retaining control. This со-designed model is shared in Figure 3.4.
As can be seen in Figure 3.4, a key part of Graham’s ‘quadrangle’ was the emergence of attending the gym as a central part of his life with breathlessness and fighting decline. As shared earlier in the chapter, Graham’s attendance at the local gym had resulted from the pulmonary rehabilitation course, but had developed into a driving force for maintaining stability, control and confidence as well as accessing a social peer group which provided Graham with ‘camaraderie and keeping youthfulness’. Indeed, the importance of the gym highlighted in the quadrangle was reiterated through Graham’s peers at the gym taking a photograph (3.1) of him that symbolised the elements of independence, control, social connection and presentation of the body.
Figure 3.4 Living with late-stage COPD.
The image in the photograph built upon the initial ideas in Figure 3.4 and the conversations between Graham and Sion which highlighted how the discipline of faith, belief, the body and the social context of the gym were part of Graham’s storied identity. In a follow-up interview focused on the representational meaning of the photograph, Graham was proud of the image and firmly believed that the photograph provided a testimony to the values of the gym work and the ‘big men’ and Tads’ who were Graham’s peer group. Body shape, musculature and aesthetics were centrally important to display, and Graham’s ability to transform
Photograph 3.1 The man on the cross: The body, faith and the reflexive self.
his physique over the (many) years of living with COPD was important to him. Graham’s body and its aesthetics transcended his late-stage COPD and everyday experience of chronic breathlessness. This gave him access to a hidden life that was about the suspension, even if momentary, of his illness experience, with his breathing and its control being the mechanism for achieving a sculptured body through weight training.
However, the photograph also had a deeper personal significance and one that Graham only touched upon during his early interviews with Sion. And that was Graham’s lifelong faith as a Roman Catholic. This sense of religious discipline and abstinence were, at times, transferred to the self-discipline of living with late- stage COPD and seeking to control his breathlessness and life according to what was guided by ‘God’s compassion’. Graham highlighted in the photograph that there was a value and personal meaning in ‘suffering’ with the positioning of the use of gym equipment in the image representing the act of Christ’s crucifixion. On a spiiitual level, Graham’s suffering with late-stage COPD fed into his long- held storied and narrative identity and one where ‘whatever you do in life should teach you something’. Graham explained that the value of his personal suffering was to achieve a higher goal in life and one way to get there in his life with late- stage COPD was to continue with the gym work for as long as possible in order to control his breathlessness and his body. Such actions and sacrifices contributed towards Graham’s increased sense of confidence and esteem, although he was mindful that his diagnosis was terminal, and death was always close at hand. ‘The man on the cross’ is Graham’s representational personal theory and contribution to our collective understanding of the lived experience of late-stage COPD.
Insights gained
At the core of the encounter between Sion and Graham was an exploration of the lived experience with COPD using a participatory case study approach. This built on the formative principle espoused by Denzin (1987) of the researcher moving from an intimate familiarity of participants’ social worlds towards an intimate embeddedness. The mechanism for enabling Graham to disclose the intimate experiences of living with late-stage COPD, and its subsequent pictorial representation, centred on a reciprocal relationship of trust and biographical sensitivity. Here, biographical sensitivity involved Sion as the academic co-researcher disclosing parts of his life in order to occupy a space beyond empathy and open up the possibility of creating a shared space for exploration and participation. This process led to shared learning and action in generating new insights into living with late-stage COPD, as shared in Figure 3.4.
The importance of biographical sensitivity within the broader study emerged from the insight of Graham as a case, which focused on recognising and making explicit shared connections in the lived experience as a form of bridging to create an egalitarian relationship. For Sion, the importance of biographical sensitivity within these (and later) encounters with the wider sample was that it moved beyond the boundaries of ‘theoretical sensitivity’ (Glaser and Strauss, 1967) and into a shared human connection. Sion as the academic co-researcher explored Graham’s experiences through co-construction and a shared an interpretive lens that allowed him to step forward into an encounter and work in partnership with Graham, as well as subsequently with other participants. It is in this way, that Sion realised the vision of what Reilly (2010) sees as the centrality of participants as co-researchers and experts in exploring their own social world within a participatory case study.
Sion also found during data collection that the centre stage diagrams helped to uncover the meaning of living with late-stage COPD by allowing Graham to author his own account. The use of such a creative technique (Williams and Keady, 2012 a,b) provided Graham with a practical, clear and rapid way to articulate and aimotate a ‘thick description’ (Ponterotto, 2006), but in a visual and dynamic form. It also extended the use of reflexivity - with the researcher ‘bending back’ on themselves (Mead, 1962 cited in Steir, 1991) - to the participant having equal access to such a learning and action-orientated process. Crucially, it enabled Graham to have a clear scaffold, particularly around ‘what’ and ‘who’ was centre stage in his life. The pace of generating the centre stage diagrams was also important as the encounters were completed during times of illness and dissipating energy and concentration, therefore, an accessible and straightforward tool to accompany the conversation was essential. For Sion, it was also important as part of the data analysis process that the discourse surrounding the diagramming was digitally recorded in order to capnu e the dynamics of the centre staging process and its outcomes, including reflexive discussions.
An additional insight provided by working with Graham using a visual form of diagramming was its role in empowering Graham to further author, detail and theorise around his experiences. Graham was able to generate a ‘quadrangle’ that captured core elements in his life, embedding the body in his narrative. This extended beyond a language-based narrative and represented for Sion what he termed in his memos as ‘action-in-leaming’. The work also opened-up an awareness for Graham about living his life with late-stage COPD and what really mattered in his life. Sion considered Graham’s diagramming and heightened self- awareness as a form of social action with a direct (and positive) consequence for Graham’s daily life as well as his relationships. In this way, the participatory case study work with Graham highlighted the potential for the approach to utilise the intrinsic case to develop understanding (Stake, 2000; 2005) and also to act as a focal point for action as an outcome.
As highlighted earlier, Graham’s ‘the man on the cross’ photograph was his personal theory and contribution to our understanding of a life with late-stage COPD. It was taken on a disposable camera provided by Sion, resulting in an image set in a naturalistic setting and not subject to distortion by particular techniques or lighting (Harper, 2003). However, the image is strategic and purposeful. Within the fr ame of the photograph the elements of place, people, body and faith are presented as a composite view, indicating the complexity involved in adjusting to a life with COPD, especially in its late stage. The central image in the photograph is the ‘body’, in many respects what Frank (1991) described as a ‘disciplined’ body image that underscored Graham’s description of seeking predictability and control through gym work. Graham emphasised the importance of a male sense of identity in his time with Sion and the image reflected a link between a gendered sense of self and the maintenance of the (male) physical body (Bassett-Gunter et ah, 2017). Yet, the positioning of the photograph was also important to Graham as it revealed the situational place of the gym which symbolised the community of body-building peers: a paradox and duality not lost in what should be happening to the body in late-stage COPD.
Ethical issues
Following ethical approvals by Bangor University and NHS ethics and NHS research and development, recruitment for the overall study was organised through a number of respiratory services. Nominated gatekeepers provided potential participants who met the inclusion criteria with an expression of interest form, participant information sheet and consent form. As part of the consent process and documentation, the use of photographs and verbatim quotations was specified to include the reporting and dissemination of the findings.
Issues of reflexivity
This engagement was deeply reflexive for both Sion and Graham. The turning point within the exchange was not the sharing of biographical details about us both being married and having a family, but the joint experience of breathlessness, Graham with late-stage COPD and Sion who lives with bronchiectasis and has also experienced periods of intense breathlessness. This shared experience opened-up a shared language and understanding of terms such as ‘flare up’, ‘exacerbations’ and the visceral phenomenon of ‘sputum’ and expectoration of sputum. This personal knowledge was combined with Graham’s intense desire to document his decline and generate action through knowledge that might then improve practice and make the lives of other people better. An additional motivation for such altruistic beliefs was Graham’s Catholicism as he considered it important to highlight that his suffering had meaning and that sharing insights was part of a form of social action that was underpinned by his beliefs. An additional factor that seemed to be important in consolidating the relationship and trust between Sion and Graham was a shared gender. It was evident from the outset that Graham was characterised by a strong sense of male identity that was severely challenged by his late-stage COPD. As already highlighted in the chapter, the safeguarding of his identity was through a focus on the aesthetics of his body and the male peer group in the gym, who berated him and maintained his sense of self despite his declining well-being.
The research encounters were emotionally charged and intense, with Graham’s wife usually excluded (at the direction of Graham) from the interviews and the kitchen, which was the ‘staging’ of the set of interview encounters. The conversation-based interviews were completed with Graham leaning forward on the table gasping for each breath despite the nasal cannula, with the diagramming done on the kitchen table and Graham directing the drawings and aimotations whilst the audio recording captured staccato narrative, with pauses for Graham to recover and continue. The physical environment underscored the narrative and the account, with the room (as tluoughout the house) strung with oxygen tubing, snaking around the floor and furniture, with portable oxygen units in the comer and the ever-present sound of the oxygen ‘condenser’ in the comer rhythmically punctuating our conversation. For Sion, the engagement with Graham was characterised by a particular affective response to the fieldwork that focused on ensuring authenticity through an open and empathetic staging of participatory case study work.
Discussion
The utility of the single ‘intrinsic’ case (Stake, 2005) is at the core of Graham’s stoiy, with ‘the man on the cross’ photograph signalling the power of a single voice when rooted in a humanist approach that values shared dialogue, humility and equality (Freire, 1993). In this instance, the key to the power of Graham’s stoiy was its openness, articulation, critical appraisal of self and the depth of description around breathlessness. As part of the dialogue, this resonated with Sion as did the latent fear of exacerbations through infections and the emergence of ‘no breath’ as a constant state in daily life and the fear of dying from ‘no breath’. An additional effective comiection was the wish to generate a spotlight on late-stage COPD and people’s lived experiences at a time when it was a rather neglected phenomenon, with the shadow of stigma linked to the negative connotation of cough and phlegm. Graham’s story also challenged Sion as the academic co-researcher, suggesting a more nuanced storyline around adjustment and stigma in COPD, grounding the wider study in the ‘personal encounter’ and avoiding an ‘overly abstract’ (Stake, 2005, p.455) approach.
From a reflexive standpoint, the social action that emerged from the ‘intrinsic case’ (Stake, 2005) of Graham had a powerful impact, although this was unanticipated as part of the study design. The account had a particular influence during the data collection process across the case studies in helping to shape the development of what emerged as an overall breathlessness model. However, the photograph of Graham as ‘the man on the cross’ as an artefact of the case study work had a transformative impact within and beyond the study. In the study, it was used as a symbolic representation/personal theory' for the entire data set during the reporting-back of the overarching findings to practitioners and policymakers as well as academic colleagues. Furthermore, on an ongoing basis within the postgraduate taught, clinical academic and postgraduate research student community at Bangor University, the photograph of ‘the man on the cross’ has continued since 2012 to have resonance with practitioners and researchers. This is especially evident in education where the photograph helps to refrarne the meaning of what it is to adjust to late-stage COPD, and chronic conditions in general, to recognise personhood, biography and gendered identity as key concerns.
Conclusion
Whilst photographs are frequently seen as polysemic images (Harper, 2003), leading to the potential for multiple meanings and readings, the use of Graham’s ‘the man on the cross’ photograph was embedded within the interview encounters alongside the diagramming providing a genuine and relational lens for interpretation. The use of a visual ethnographic method as part of the participatory' case study further enhanced the opportunity for Graham’s authoring of the account and authenticity of his voice. Of particular importance in this participatory case study is that Graham found meaning through the research encounters, as well as its role in building opportunities for shared learning and action. Revisiting what it meant to be ‘the man on the cross’ reflects the positioning of the relationship between Sion and Graham acting as the academic and participant co-researchers, a positioning that powerfully transcended and challenged everyday experience.
Key learning points from the method used
- • The use of a participatory case study approach combined with constructivist grounded theory provided an effective approach to understand the complex life experiences of Graham and his adjustment to COPD.
- • The power of the intrinsic case within a broader study landscape is illustrated by the co-construction with Graham and is focused on conversation and diagramming within the encounter. The adoption of creative techniques focused on centre staging and the use of photographs by Graham enabled him to articirlate an authentic account that was both reflexive and theoretical.
- • Graham as an illustrative case highlights the nuanced opportunities within a participatory case study to deliver both learning and action when combined with constructivist grounded theory as a composite approach. The case study identifies the potential for action within the case (Graham in this instance) as part of reflexive learning about the self as well as its wider reach in acting on others and informing their practice.
- • The paxticipatory case study identifies the importance of a pluralistic stance to methods and techniques in a participatory case study, in paiticular, the value of photographic testimony and interpretation to enable participants as co-researchers to access a toolkit for ‘doing research’.
Three key references
Frank, A.W. (1991). For a sociology of the body: An analytical review. In Featherstone, M., Flepworth, M. and Turner, B.S. (eds.), The Body: Social Process and Cultural Theoiy (pp. 36-102). London: Sage Publications.
Sundh, J. and Ekstrom, M. (2016). Persistent disabling breathlessness in chronic obstructive pulmonary disease. International Journal of Chronic Obstructive Pulmonary Disease, 11: 2805-2812.
Williams, S. and Keady, J. (2012). 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.
A recommended future reading list
Bassett-Gunter, R., McEwan, D. and Kamarhie, A. (2017). Physical activity and body image among men and boys: A meta-analysis. Body Image, 22: 114-128.
Gardiner, C., Ewing, G., Kuhn, I. and Farquhar, M. (2018). Support needs of patients with COPD: A systematic literature search and narrative review. International Journal of Chronic Obstructive Pulmonary Disease, 13: 1021-1035.
Jarab, A., Alefishat, E., Mukattash, T., Alzoubi, K. and Pinto, S. (2018). Patients’ perspective of the impact of COPD on quality of life: A focus group study for patients with COPD. International Journal of Clinical Pharmacy, 40: 573-579.
Miravitlles, M. and Ribera, A. (2017). Understanding the impact of symptoms on the burden of COPD. Respiratoty Research, 18: 61. DOI: 10.1186/sl2931-017-0548-3.
References
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