Framing and adapting participatory case study work

The description of participatory' case study work provided by Reilly (2010) provides a key platform in drawing together the two strands of case study and

Table l.l Parameters of Participatory Case Study Work (based on Reilly, 2010)

participator)' traditions in qualitative research. As with participatory approaches more generally, it pivots on the influential texts by Paulo Freire (1993) and is rooted in seeking to achieve social action and justice based on an egalitarian approach. Reilly (2010) provides a clarion call for unifying a case study approach within a participator)' research framework, centred on a critical stance that addresses social action. The summary presented by Reilly (2010) outlines the main features of this approach, detailing the roles and responsibilities of the researcher and study design in developing a facilitative process with social action at its core, as shown in Table 1.1.

As revealed in Table 1.1, the main features of participatory case study work include sensitivity to the cultural and local context, a democratic process that leads to potential social change and authentic knowledge as an outcome built on an accessible form of case reporting. At the centre is a recognition about the importance of subjectivity and reflexivity and the importance of everyday language consistent with that of participant co-researchers (our adopted term) and the mutual ownership of knowledge. Crucially, participatory case study work is viewed as benefiting participants and those involved in the study, so that research is conducted with attention to ethical and fair standards. Overall, participator)' case study work contributes towards the flourishing of individuals, groups and communities as it imbues a positive sense of engagement, identity and gaining new skills or relationships through involvement in the research process. This may require the academic co-researcher (our adopted term) to provide scaffolding for learning around methodology or methods to support participant co-researcher(s). Equity in decision making is reflected in the data collection, data analysis and interpretation processes, and is focused on negotiation.

In this way, participatory case study work is concerned with the local and engagement with communities and groups as a ‘bottom up’ enterprise that anchors the researcher and the research process within these contexts. As such, it argues for the realisation of an emancipator)' goal, aligned to the principles of wider participatory approaches. It seeks to realise the agenda of Freire (1993) in the democratisation of action and learning and thereby achieve the liberation of people from the oppressive constraints imposed by society, the state or elites. Participatoiy case study work adopts a critical view of power and highlights how people and communities may often be positioned on the margins and disempow- ered. It builds the research act around a vision that affirms the positive value of human creativity and the ability of individuals, groups and communities to articulate more clearly, and with greater insight, than researchers, then experiences or challenges (Reilly, 2010). Moreover, paxticipatory case study work has at its core learning, and recognition of the capacity of the human condition to embrace learning, in order to facilitate social change or action. As a collaborative process, the aim of participatory case study work is to provide an inclusive study design, empowering the voices of those who may hitheito have lacked an opportunity for their voices to be heard (Reilly, 2010).

The participatory case studies within the book illustrate a broad range of research projects that centred on a number of research areas within the field of ageing, from exploring the lived experience of dementia through to Parkinson’s and on to dementia-friendly churches. Their inclusion includes a spectrum of research-based activities and involves a breadth of academic co-researchers (including a priest-researcher) and participant co-researchers who lived with one, or a number, of long-temi conditions. These participatory case studies were anchored in facilitating social action through inquiry that co-constructed knowledge. The case studies also sought to engage in the ‘democratization of research’ (Maguire, 1987) as part of their respective designs, involving the development of co-constmcted methods for data collection and interpretation. Centre stage was the engagement with the everyday and ordinary lives of people as participant co-researchers, a positioning that leads to a more authentic and cxitical reflection of the social reality that was being experienced. This standpoint also facilitates the solving of social problems through the generation of personal and collective theory and action.

Contextualising our re-positioning of participatory case study work

The piupose of this section of the chapter is to outline our ‘blended approach’ to participatory case study work, focused on addressing social action through theory' and action. This approach is highlighted by the individual contributors to the chapters, signalling the power of using case study rooted in the underpinning precepts and principles of participatory' research, combined with a flexible array of methodological partners, including constructivist grounded theory and narrative, framed as part of an empowering approach. This blended approach is also suffused with a range of techniques and methods used by the academic and participant co-researchers in a collaborative enterprise.

Our blended approach has as its starting point in what Stake (2005) identified as components of a qualitative form of case study work, with an interest in the intrinsic at its core, embracing the researcher’s interest in adopting a humane position and using methods to advance storytelling. It includes a flexible approach that ranges across intrinsic, instrumental and collective case study work. Our blended approach also recognises the value of ‘discovery learning’ (Stake, 2005, p.454) that emerges from understanding the intrinsic case and using experiential knowledge to draw together textured narrative accounts that illuminate the nature of the case. This is based on situational and socially constructed knowledge. Within this context, this book frames participatory case study work as building on that humane foundation of case study work rather than being entangled in arguments regarding the inner-workings of case study as either a qualitative, quantitative, mixed methods or a stand-alone approach, methodology or method. Our blended approach is therefore driven by seeking to understand the ‘case’ as either an intrinsic or collective representation. In this context, the blending of participatory case study work with other approaches in a flexible and creative maimer is important. For instance, in some instances within the book, examples are given of the alignment of participatory case study work with constructivist grounded theoiy (Channaz, 2000; 2006) and its emphasis on an authentic and inclusive representation of lived ‘raw’ experiences. However, our blending of approaches also includes the adoption of narrative and a deeply visual media, including diverse forms of mapping and diagramming, as well as other ways of working through creative social research methods.

The intention of our blended approach is to emphasise the combination of theoiy and action in participatory case study work. This is directed towards the transformation of both elements acting in reciprocity, moving beyond dialogue which may only result in empty reflective ‘verbalism’ or, indeed, as highlighted by Freire (1993) ‘if action is emphasised exclusively, to the detriment of reflection, the word is converted into activism’ (p.61). Our approach seeks to draw both the academic co-researcher(s) and participant co-researcher(s) into an active process of understanding the intrinsic (and thereby the collective) case situation and enabling both theory and action to emerge as outcomes. The nature of the ‘action’ outcomes may be at the individual, group or wider level and the emergent theory' may equally be emancipatory, in terms of insight and empowerment, to either the individual or the group. In the book, this is evident in Chapter 8 when describing life with Parkinson’s, which provided participant co-researchers with selfreflection and a platform for action, as well as changing clinical practice in the academic co-researcher’s place of work, the movement disorder clinic. Equally, action may be immediate or more prolonged, as seen in the case of ‘the man on the cross’ (Chapter 3) where Graham gained immediate empowerment from being a participant co-researcher, but his story and personal theoiy on breathlessness also informed policy as well as postgraduate education and learning through its powerful narrative and use of visual imagery.

In many respects, key issues shaping participatory case study work as part of our blended approach are knowledge and its validation. A common thread throughout the case studies in this book, and our work over the years, has been in the efforts to enable older people to gain what we have termed ‘an epistemological foothold’ in the research act and become participant co-researchers alongside the academic researchers. Such positioning addresses the social injustice of hidden or absent voices in the evidence-base. It is through a focus on the intrinsic and the situational that participatory case study work enables the authentic voice of older people living with a range of long-term conditions to emerge. The research act was reframed around a partnership approach built on a flexible process of inquiry enabling reflection, learning and potential for action for both the academic coresearcher and participant co-researcher(s). As Freire (1993) notes:

Reflection upon situationally is reflection about the very condition of existence: critical thinking by means of which people discover each other to be ‘in a situation’.

(P-82)

In this way, the process of ^lconscientizacao’ underlines the ability of human critical reflection to result in critical action, based on a deepening of awareness that emerges from submersion to intervention in reality ‘as it is unveiled’ (Freire, 1993, p.82).

Fricker (2013) provides a usefiil platform for viewing the contested nature of knowledge and epistemology and its rootedness in social contexts and practices, often linked to forms of hidden or explicit social injustice. This area of inequality is termed as ‘distributive epistenric injustice’, referring to the ‘unfair distribution of epistenric goods such as education or information’ (p. 1318), but of particular relevance in the framing of our adapted approach to participatory case study work is the importance of discriminatory epistenric injustice. Fricker (2013) argues that this centres on two key elements in people’s experiences: ‘testimonial injustice’ and ‘hermeneutical injustice’. These are particularly salient in supporting participatory case study work as described in this book and which we have framed as a blended and flexible approach. In the case of ‘testimonial injustice’, Fricker (2013) highlights how people may be undermined as a ‘giver of knowledge’ (p. 1320) by others; for instance, as part of a discourse there is a prejudicial response based on a deficit of credibility fl our a ‘hearer’s judgement’ (p. 1319) to the testimony provided, leading to devaluation or rejection of what is said. In contrast, ‘hermeneutical injustice’ denies people’s ‘capacity for social understanding’ (p.1320) representing the context underpinning a ‘testimonial’ deficit, based on the speaker’s position on the margins of being a participant in articulating or have equity in accessing social meanings. As Fricker (2013) notes, in this way, people are ‘put at an unfair disadvantage when it comes to making sense of significant area of then^- social experience’ (p. 1319).

These notions of injustice echo with the thoughts and writings of Freire outlined by Reilly (2010). Participatory case study work seeks to reframe the research act in favour of giving a voice to participants in shaping and directing the inquiry, thereby addressing the imbalance of power. Consequently, the position of participants on the margins is addressed in order to improve a social situation as part of the inquiry. The term ‘by the local people for the local people’ captures the essence of participatory case study work (Reilly, 2010) and in this way, the aim of participatory case study work is to provide ‘authentic experiences’ based on the academic and participant co-researchers forming a partnership throughout the research process, building new relationships, knowledge and action.

Introducing the authentic voice and the ‘stepping model*

At the core of reframing participatory' case study work is adopting a model that draws on its existing principles and precepts (Reilly, 2010), mapping a blended approach that we have implemented in ageing studies. Participatory case study work is rooted in an interest in the intrinsic case that is focused on a commitment to the individual case as its starling point, and where appropriate, then extending to an instrumental or collective case study (Stake, 2005). Irrespective of context or scale of the ‘case’, participatory case study work is centred on the ‘teaming’ (Stake, 2005) of academic and participant co-researchers. As part of the actions emanating from the case study partnership work, there are opportunities for theory' development and ‘discovery' learning’ with case reporting embedded in storytelling (Stake, 2005). Importantly, and consistent with the breadth of the boundaries established around case study work, participatory case study work enables the academic and participant co-researcher(s) to adopt a flexible approach. This is centred on its use and development, responding to the question(s), contexts and collaborations involved in the particular setting and answering questions that are important to those with lived experience.

To reach this destination, our blended approach to a participatory case study work is anchored in what we have developed and named as the ‘stepping model’. This provides the overarching fr amework for research in action as part of participatory case study work and at its core is a set of vision and values necessary to reach the authentic voice, as seen in Figure 1.1.

As part of the ‘stepping model’ for participatory case study work, the key vision was to develop a process of social action that empowered the authentic voice to emerge as part of the collaborative research work. This involved developing a case-orientated approach built on opetmess between the academic and participant co-researchers with agreed parameters for eliciting and testing any co-constructed meaning through a set of values. These values require the academic co-researcher to: i) create the conditions for engaging participant co-researcher(s); ii) frame the relationship and the nature of discourse within the participatory case study work; and iii) establish the space for personal creativity to emerge. The interconnected values are:

Analytical: This focuses on the values of a case-orientated analytical structure, with sensitivity to the intrinsic roots of the participatory case study work, achieved through relationship development and demonstrated through creative social research methods, led by the participant co-researcher(s).

Figure l.l Vision and values: participatory case study work in action.

Democratic: This pivots on the values of a democratised and negotiated in the participatory case study work process as well as ensuring on disseminating the messages from the case-orientated outcomes by safeguarding the authentic voice generated from the research work. This involves a commitment to shared outputs, personal and representative theory owned between the coresearchers and democratisation of the research process.

Engaging: This focuses on the values of ensuring the study facilitates an accessible way of working to safeguard engagement with the participant co-researcher as part of the case work. This includes the importance of facilitating time in uncovering biographical and networked context of the case study.

Empathetic: This involves the core value of the academic co-researcher having an interest and sensitivity towards exploring the human condition and adopting a compassionate as well as a positive stance towards the inherent ability of people to engage in voicing their own experiences and insights, irrespective of age or condition.

Representative: This anchors the values of ensuring fairness and naturalistic representation throughout the participatory case study from its onset, initially centred on developing the contours of the ‘case’ and the framing of a research question. This will also include reflecting these values in drawing in an appropriate sample and shaping the data collection processes and procedures, such as sharing (exchanging) stories between the academic co-researcher and participant co-researcher to provide a fair and equal footing for exploring the experience under study.

Relational: This centres on the values of an equitable relationship driving forward the participatory case study work, to ensure sustained engagement, underpinned by shared ownership of experience. This is echoed in an embedded change of language from participant to ‘participant co-researcher’ and the academic researcher to ‘academic co-researcher’.

Creative: This emphasises the values of openness to creativity and co-con- structing methods to help participant co-researchers to develop a symbolic representations] of experience in a communication method that is personally meaningful.

The vision and values are positioned centrally within the ‘stepping model’ as the hub driving forward a flexible and dynamic process, highlighting different stages to the research and partnership processes and the occupying of different roles dining its development are illustrated in Figure 1.2.

Figure 1.2 The'stepping model’: doing participatory case study work.

To develop the meaning of Figure 1.2 further, we describe the attributes of the ‘stepping model’ as follows:

Stepping in: Academic co-researcher takes charge of initiating the participatory case study, locating participants, designing the study and seeking ethics approval to conduct the work. Some steps may be participatory. Provides the initial leadership and direction.

Stepping aside: Academic co-researcher starts to hand over responsibilities of action on the participatory case study. Can be overt or covert. Gradual process marked by lessening of directive decision making by the academic coresearcher. Participant co-researcher/group start to assume responsibility for, and ownership of, the research question and how it is answered.

Stepping back: Academic co-researcher becomes an observer but folly prepared to step in again should this be necessary. Participant co-researcher folly in charge of answering the research question and deciding upon its direction and eventual product. Gr adual process, although it is marked by watchfulness and the built relationship.

Stepping out: Research activities come to an end but the academic co-researcher role may not. In stepping out there is a direct link back to stepping in, for example, to finalise report writing and dissemination activities working alongside participant co-researchers, but in a more egalitarian and cooperative way wherever this is possible. Stepping out continues to be underpinned by time atrd relationships, including the errrergence of friendships that have happened over the period of engagement.

Stepping forward: Although the participatory' study activities and case reporting are finalised, emergent outcomes as either or both personal or collective theories are surfaced by the academic co-researcher and/or participant co-researcher(s). These outcomes extend beyond the study boundaries and are based on social action within the lives of academic or participant co- researcher(s), in a direct or indirect setting.

In our adaptation to participatory case study work, therefore, the ‘stepping model’ delineates a dynamic and cyclical process of undertaking a blended approach to participatory case study work, centred on the academic co-researcher and participant co-researcher(s) acting in partnership, but with discrete roles and responsibilities during a flexible process of inquiry. These discrete processes result in a varied range of outcomes and impacts that cumulatively represent the authentic voice. This representation can be displayed through the product(s) of action, knowledge and/or learning (or a combination of these approaches) and are reached by working together to produce a ‘personal theory’ (as a consequence of one-to- one co-working) or a ‘collective theory’ (as a consequence of group working and co-production). In this way, the actions and outcomes of participatory case study work can be situationally located, explanatory and cany meaning over time. The journey taken by the academic and participant co-researcher(s) to attain and ‘own’ their personal and/or collective theory, and thus represent the authentic voice, is the cornerstone of this book and of our adapted approach to participatory case study work.

In terms of the participatory case smdies shared in this book. Part 1 illustrates the within case illustrations that depict a range of personal theories generated through participatory case study work. For instance, a range of methods and media are used to display the participant co-researchers’ voice resulting in an authentic personal theory. This ranges from the visual mechanism of a photograph and modelling in Graham’s ‘the man on the cross’ in chronic obstructive pulmonary disease (Chapter 3) through to the use of cartoons and diagramming in Parkinson’s (Chapter 8). Equally, in terms of social action, there are examples of shared strategies for moving forward as a couple using ‘stroke circles’ (Chapter 5) or asserting a locus of control in the early diagnosis of Alzheimer’s disease (Chapter 6). However, as seen across the case studies shared in this text, the research act itself was a powerful form of personal, social and collective action, including the transformative experiences of people living with dementia taking part in a series of‘Music in Mind’ group sessions (Chapter 9) for example.

Within such an approach to participatory case study work, the nature ofpersonal and collective theory-action outcomes leads to impacts that may have an immediate or longer-term effect and/or in a localised or wider context. For instance, the relevance of action or theory' over time operating in the lives of people as participant co-researchers or their wider family, such as Graham himself as a person living with late-stage chronic obstructive pulmonary disease, but also more broadly linked to his family and the local community in the gym (Chapter 3). Equally, in terms of collective theory or action, the setting for impact can be focused on the immediate situation, such as Graham’s adjustment to the experience of decline with chronic obstructive pulmonary disease and a sense of control in his life, or it can impact upon the wider context of learning and action from relating his story' (and model) to others.

As part of our blended approach to participatory case study work, some of the academic co-researchers and participant co-researchers in this book have used a constructivist grounded theory approach (Charmaz, 2000) to develop and share a personal theory of lived experience (see, for instance, Chapters 3, 5, 6 and 8). In this way, the authors seek to focus on the ‘mutual creation of knowledge by the viewer and viewed’ (Charmaz, 2000, p.510) enabling participant co-researchers to ‘cast their stories in their terms’ (Charmaz, 2000, p.525). In particular, within the constructivist approach, the reflexive vision of ‘knowing and representing studied life’ (Charmaz, 2005, p.509) not only surfaces what people view as their realities but also positions the researcher within such realities as part of the research act. Other academic co-researchers and participant co-researchers have focused exclusively on a narrative approach within their participatory case study work and the development of a personal or collective theory, embedded in the use and enjoyment of biographical methods, including visual media (for instance, Chapters 2, 4 and 10). These aforementioned chapters are characterised by a creative and inventive stance by academic co-researchers and participant co-researchers, such as ‘interaction-focused life story work’ (Kindell et a!., 2019), the development of ‘life stoiy scripts’ or centre stage diagram techniques (Williams and Keady, 2012a,b). The range of analytic methods and techniques is also characterised by pluralism, extending from thematic analysis, grounded theory techniques and positioning analysis (Harre et al., 2009).

Overall, the book seeks only to guide the development of participatory case study work with a focus on ageing studies, through the application of its ‘vision and values’ and the ‘stepping model’, rather than a formulaic regime of activities or methods. Moreover, the steps inherent in the stepping model are at times to be implied rather than made explicit in the writing-up of participatory case study examples shared in this book. As editors, we did not want to insist that all authors must outline the ‘steps’ they adopted - and when - in the presentation of their individual or collective (group-based) cases. The reader must therefore read between the lines at times and keep the steps of the stepping model in mind when working through the presented case(s) in each of the chapters. Importantly, it is the reflexivity and intuitive practices of the academic and participant co-research- ers working together that enables creativity and the authentic voice to emerge and embody the representation of lived experience.