Highlights

• The power of story in identity, community building, education, social innovation, and health-related community business
• Stories, narratives, and metanarratives
• Narrative in medicine
• Using narratives for building trust, research priorities, data collection, interpretation, and implementation
• Discourse analysis of stories in autobiography
• A narrative data science

While seeking to test the feasibility of co-research in Chapter 2, we discovered that narrative methods unleash the power of stories as reservoirs of experiences and expertise that are essential to peer research. Stories allowed us to explore existing theory and create a storied method for co-design, data collection, analysis, interpretation, and innovation. Consistent use of story identifies and explains shared concerns and explores potential solutions and actions that are meaningful to patients and communities. The challenge has been how to make narrative meaningful to health professionals and researchers who favour itemized, standardized, and aggregated evidence.

The chapter begins with Rita Charon (2001, https://doi.org/10.1001/jama.286.15.1897), a pioneer in narrative medicine, who has been instrumental in calling attention to medicine’s need to find more humble, respectful ways to see health from a contextualized, patient’s perspective. A narrative gaze invites healthcare into an intersubjective dance, populated by patients, healthcare providers, and families in their relationships. This opens the door to using stories to explore present and past experience along with possible futures as suggested by Duncan Campbell (2015, https://onthewards.org/bother-listening-patients/).

While coded language and siloed health publications protect power and professionalism in research, there is the growing pressure to democratize science by making room for voices of those who live with, care for, and support patients and their families. Patients are the only new partners in open innovation in science (OIS) initiatives that don’t have an existing research methodology or understanding of science. It is therefore important to consider the need for narrative research methods, especially those that have been co-designed and tested with them. Narrative, in this time of new social media platforms that are familiar to patients, can and should be part of how we gather and understand data that is relevant to patients and the public.¹

Medical sociology and psychology already have adopted narrative, and this chapter could not have been written without the inspiration of researchers who experienced health concerns and used narrative. Using dual roles to explore how direct experience enriches and informs scholarship. Dr. Art Frank, a sociologist at the University of Calgary, wrote about his experience with cancer in The Wounded Storyteller (2013), which encouraged academics to explore narrative. Kay Redfield Jamison, author of the autobiography An Unquiet Mind (1997), produces academic and popular books that brought new light to bipolar disorder through a patient lens. New research directions such as narratives of change (Wittmayer et al., 2015, http://www.transitsocialinnovation.eu/content/original/Book%20covers/Local%20PDFs/181%20TRANSIT_WorkingPaper4_Narratives%20of%20Change_Wittmayer%20et%20al_October2015_2.pdf) and narrative foresight (Finkler & Leon, 2019, https://doi.org/10.22323/2.18050202) provide democratic, participatory, and action research perspectives and structures to address the surge of potential of narrative approaches in citizen and personal science.² This work informs the creating of a theory of engagement in this book.

A Peer Research Approach to Narrative

People tend to lose their personal stories when confronted with serious illness. As patients, they quickly become socialized to new stories about who they are now, as ‘the patient.’ They view their new identity through clinical and illness stories and language that reinforce standardized labels and practices about their new identity. These patient stories are adopted and embodied because they open the door to the clinical pathways that define expectations, roles, relationships, and life goals. People see themselves as their diagnosis and healthcare roles. This loss of personal stories not only changes the content of stories, but the characteristics of stories also change.

Patient stories lose their individuality and singularity as they become absorbed in their care pathways. Peer research reclaims the importance of patient perspective as an active participant in the decisions about what they experience or would hope to achieve. The use of stories as data reclaims a patient voice that makes these authentic health research partnerships possible by describing a patient perspective of main concerns that invites engagement in potential solutions. Stories can be full stories or fragments of stories, using research methods that incorporate personal and shared stories, metaphors, songs, pictures, films, advertisements, or common slang or sayings, in person or online.

New practices emerging from artificial intelligence and machine learning identify patterns and make decisions but require data from real-life patient perspectives. Just as physician narratives and notes made significant advancements when added to machine learning, so too will direct patient experience data increase the power and usefulness of machine learning about patient experience. The final result will be patient-informed algorithms for treatment options. This movement is enhanced through examples such as Zamplo https://www.zamplo.org that are creating platforms that combine online research, patient access to research to data platforms and treatment options while opening the gates to patient networks.

Strengths of Narrative

The following summarizes some of the reasons why stories are essential to research about patient experience.

• Stories make sense of illnesses with links to healing.
• When you listen to a story, you process the action as if you were the actor and this increases memory.
• Stories look back, process the present, and forecast options of what could be or should be.
• Stories start in chaos, and in the telling and retelling make sense out of confusion.
• Stories can make ideas that are complex seem doable.
• Stories are windows into traditions and cultures that are hard to access.
• Finally, stories are subversive; they expose official stories and, in doing so, counter dependence, vulnerability narratives.

The Role of the Researcher in Narrative Research

We begin this section with a discussion about the basic shifts in researcher roles that are necessary when the decision is made to engage patients and communities in research using narrative methods. My PhD study began in the midst of fierce debates over appropriate roles for citizens in participant or partnership research as part of civil rights movements. For example, in Women’s Words (Gluck & Patai, 1991, https://doi.org/10.4324/9780203819371), Etter-Lewis stated that women should tell their own interpreted stories, while in the next chapter, Katherine Borlan, a folklorist, cautioned that researchers needed to maintain responsibility for research integrity by re-telling community stories through an academic lens. Mishler (1996) used the term ‘critical research’ to challenge researchers to enhance the opportunities for those studied to gain awareness and improve their status. Mishler, in the same text, suggested a continuum of shared interpretation strategies in narrative research:

1. The researcher analyzes and interprets narratives on their own, with no contact after data collection.
2. The researcher has the subject verify the transcripts.
3. The researcher completes the project and shows it to the subjects for verification.
4. There are opportunities for separate roles for narrators and narrative researchers.
5. The researcher and the subject enter into an ongoing dialectic about meaning and arrive at a joint product.
6. The researcher is the scribe representing stories told.

None of these accurately reflected the nature of our roles at the beginning of the original research to test the feasibility of co-production, but our research relationship grew into partnerships, which reflected point number five above. The partnership was built on a shared commitment to move beyond the moral imperative of engagement, to learn how to create a relationship at all stages that would combine rigour, experience, and meaning for both me and the co-researchers. Within these relationships, peer research is seen as an interaction controlled by role expectations. If the roles are not discussed openly, participants are left to construct their own roles as narrators, telling stories based on their assumptions about what the researcher was looking to find.

Experience with peer research reinforced the need to include a process of negotiating roles and expectations as outlined in Chapter 3. I needed to be clear about why I was committed to the research, what co-researchers could expect of me, and how we would handle challenges. This also included what co-researchers wanted to know about why they had been chosen, disclose how they saw themselves, and their concerns and hopes in light of the risks, costs, and potential benefits. Without this foundation, there are risks for each party, left to guess about what was adequate when they were finished and what the results meant.

In Canada, we see this through the powerful participatory and action research done by trained peer researchers within the HIV/AIDS community (PAN, n.d., https://paninbc.ca). In narrative methods, roles of peer researchers and participant co-researchers are more easily balanced. The natural peer partnership between researchers and participants significantly reduces the ethical and scientific challenge of imposing theory on vulnerable populations. At the most fundamental level, enabling stories of role expectations to be shared enables peer research to use stories to share ideas and concerns.

This reflects narrative therapy where the person is encouraged to explore different endings to entrenched problematic stories. In peer research the same is true when peers share stories and, in the process, come to understand the problems and possible alternative outcomes.

How Narrative Improves Health Research and Care

Stories impact not only our ability to process information, but how to use and remember stories (Zak, 2013, https://greatergood.berkeley.edu/article/item/how_stories_change_brain). The innate or hard-wired biological power of stories works as follows. When your brain detects the beginning of a story, the auditory cortex becomes active. Then the left temporal cortex, the language cortex, becomes engaged and filters out complex and distracting language to focus on the story. By the time the frontal and parietal cortices become involved, we are literally engaged with what’s happening in the story as neurons respond as if we were enacting the story in person.

As we hear stories they are translated into personal ideas and experiences in the brain. This process is called ‘neural coupling,’ where experience told in the story is mirrored by the same experience in the listener’s brain. Speaker-listener neural coupling underlies successful communication. Emotionally charged stories release the neurotransmitter dopamine that ensures that memories remain relevant and accessible. These neurological patterns have spawned new transdisciplinary research and science used in business and marketing, social change at the organizational and political levels, education, and therapy, but it has not penetrated the shields around health research.

We see the evolution of narrative in health research beginning in 2014, when the Lancet called attention to qualitative research to broaden the scope of health research and to become more cultural, humanistic, and holistic. The increasing presence of wellness theories, such as salutogenesis, honed interest in narrative research to capture personal stories of success. The World Health Organization (WHO) Health Evidence Network produced a report on the cultural contexts of health and the use of narrative research in the health sector (Greenhalgh, 2016, https://www.ncbi.nlm.nih.gov/books/NBK391070/). This report focused on how qualitative evidence from narratives has been deployed in the health sector and to what effect. Within the scope of policy and planning, the report highlighted strengths and limitations of using narrative to identify shared values and meaning related to culture in the following:

• Individual accounts of illness.
• Case study narratives of health organizations and systems.
• Cultural narratives where stories are embedded in master narratives of disadvantaged or displaced communities.
• Policy discourses that drive action.
• Shared narratives.

The report concluded, “In recent years, researchers have recognized both the ethical and the scientific challenges of imposing their own research framing (e.g., a particular theoretical lens) on the voices of the vulnerable” (Greenhalgh, 2016, para. 9). They suggest that phenomenology, co-design approaches, and community-based participatory research open opportunities to employ naturally occurring narratives and online communities, broadening the options to include narrative in health research.

There is increasing support for narrative research as an adjunct to quantitative research to support patient-oriented research and policy evaluation and innovation. Data storytelling (Nugit, n.d., https://www.nugit.co/what-is-data-storytelling/) has been called the last 10 feet of research, where it creates a coherent and compelling narrative to share data results.

Levels and Types of Stories as They Relate to Health Research

There are three commonly understood types of stories that operate at the personal, group, and societal or organizational level.

This section describes how personal stories take on the power of community narratives when they are shared. These narratives then grow into master or metanarratives or discourses that challenge dominant professional and institutional discourse. The research of my thesis revealed three significant levels: personal stories, narratives, and metanarratives or discourse. This is depicted in the following example.

Henry Enns, a founder of Disabled People’s International, connected with groups of disabled people around the globe by encouraging sharing personal stories of the challenges of living with disabilities. These painful and embarrassing stories, when shared in groups, led first to dark humour and then to the realization that the challenges were not about their personal or group inadequacies but about the common lack of institutional planning to make access to funding, buildings, and services a priority. Personal stories led to shared and compared stories that identified stories with meaning for the group. These then led to stories about power, oppression, and emancipation.

Stories: The Level of the Individual, Personal Accounts of Events

The term ‘story’ has ancient roots in most languages, most frequently, a form of ‘historia’ to describe a form or way of sharing experience: a tale, information, stained-glass windows.

A story is a report, description, account or a telling,

either true or imagined,

of an event, incident, occurrence or something that happened, is happening or could happen

that has not been widely known or previously told.

In most northern countries, a story includes a beginning that sets the context of the story, the plot or sequence of the events, and an ending that indicates the impact and consequence of the story. This provides a framework for collecting, transcribing, and interpreting stories. This structure presents stories as data for analysis that can be shared, compared, and combined with other stories. Mishler cautions that our “attempts to validate people’s intentions or personal truth inserts our theories into personal stories. Traditional research practices often obscure relationships . . . and disrupt the individual’s attempts to make sense of what is happening to them and around them” (Mishler, 1986, p. 120).

I realized that it was impossible for me to represent the life world of a co-researcher during my thesis. My interpretation of a co-researcher’s personal stories coloured my understanding of what was happening. I learned that the story in vivo, in the person’s own voice, provided direct insight into possible categories, priorities, codes, and possibilities for using the same basic story to convey many meanings depending on the intention and outcomes expected.

A young man with AIDS may tell or interpret stories from the perspective of gay men as a group, a person with terminal illness, a young person living on fixed incomes with ongoing needs for support, a person stigmatized and alone, or someone living in a large city. He may share much in common with each of the groups he represents. In peer research, the peer connection creates the context (type of group above) and the co-researcher contributes within this shared view of the world. He is clear about himself as a producer of knowledge within the shared context.

Narratives: Stories of Shared Meaning in the Group or Community

The meaning of narrative comes from the Greek ‘gnare’ or meaning. Narratives are the way human existence is rendered meaningful to others. Stories take on value and meaning as they are shared and repeated in different contexts, with different people, for different purposes. Stories become narratives of expertise and potential futures.

A peer research focus group comes together to share common experiences and in the process the group creates narratives of their collective understandings. The process of sharing, analyzing and interpreting individual stories develops narratives in research in the same way people who share common experiences create narratives that create collective understandings of their fears and concerns, experience, and aspirations. They connect the past to the future through shared stories in the present.

Narratives are triggers of action research, they identify common concerns, explain what is happening, and explore alternative outcomes and actions to challenge dominant restrictive discourse. The following story from my time at Greenbank demonstrates this.

I was working with the founder of Greenbank to code data in a story about professionals who tried to take over Greenbank and move Gerry to ‘disabled jobs’ within Greenbank. I had named the story ‘Carpet Bagging’ because they were opportunists looking to take over. He was very offended by my assumption that he was considered weak because he was disabled and countered with the titles of ‘Playing Coach’ and ‘Taking Back Power.’ After much debate, we agreed that the meaning in the story was ‘Expect Takeover Attempts by Those in Power.’ The eventual title spoke of a relationship wherein innovators needed to expect takeover bids and be prepared. It was not a threat but a fact of doing business, as social innovation threatens those in power.

The above discussion created new meaning and made future analysis lively and collaborative. In the end what mattered was that the title (the code for the story) had changed to bring action and power to the overall storyline of Greenbank. It demonstrated how important it was to clarify the meaning of individual stories to make room for potential change narratives.

The seniors in the Grey Matters study (Marlett & Emes, 2010, https://press.ucalgary.ca/books/9781552382516/) were motivated to confront geriatric and gerontological narratives of loss, ‘downhill slide,’ decrepitude, and burden of care. They were looking to challenge these healthcare narratives, and in their research, they found narratives of strength through common stories of expertise and knowledge, not deficit and loss. Their stories spoke of the importance of family and community strength during war and depression that prepared them to be resilient, resourceful, and political. These narratives were slogans of emancipation and defined who they were and could be in society. They feared for young people who lacked opportunities to test their abilities and build resilience. These findings seemed to challenge geriatric and gerontology professionals when presented at conferences.

Narratives also create the impetus to change in healthcare practice. Charon’s 2017 work on narrative medicine motivates physicians who are interested in making a difference to restore medicine to a more holistic and humane partnership with patients. She does this by sharing common stories of relationships, insight and foresight

To summarize, emancipatory narratives tend to capture the struggle to overcome prejudice or marginalization, and in the process, these narratives challenge the power of accepted professional or political discourse. A narrative is a story with a purpose—it conveys something new or different from the expected patient story. Collective stories suggest new roles and relationships in the way we see ourselves and relate to each other.

Master Narrative or Metanarrative: Using Emancipatory Narratives to Challenge Systemic Discrimination

The story of Terry Fox and the Run for the Cure became an example of a Canadian metanarrative. He courageously challenged cancer by running across Canada, and in the end, cancer won. His story of courage in the face of a common enemy spurred generations of Canadians to run for the cure. This discourse is seldom understood in countries where only winning counts. We all need heroes, especially those heroes that are part of us—imperfect, struggling, but with determination and focus. We want people to look up to those who are like us.

Master narratives operate at the organizational and societal level to define, share, and hold power. These master narratives become dominant discourses when they justify political control through policy and procedures that restrict the independent action of those who fall within their authority. The power held by experts and the systems that support them became a target of early emancipatory social science that studied the language of the power holders to lay bare the means of oppression. Discourse analysis became the tool of critical theory and emancipatory science to understand metanarratives, especially in academic programs such as feminist, racist, Indigenous, and disability studies that are devoted to social change. They use action research to confront power through new ways of doing, organizing, framing, and knowing through narratives and metaphors that reinforce innovation and action.

To date, health systems have been relatively immune to these challenges because their power holds the promise of access to life-saving information and care. Early emancipatory narratives in health identify why change is needed by unpacking the systemic forces supporting dependence and marginalization. They also locate who has the power and how change can be promoted. This is the message of Chapters 9 and 10 of Section 3, which is about systemic analyses of healthcare discourse from two perspectives: systemic discrimination and collective empowerment. They create alternate realities by challenging the norms, values, and beliefs of the dominant discourse and, in the process, devise alternative futures and the social innovations for change that focus on the use of narratives as community development practice (De Fina & Georgakopoulou, 2008, https://doi.org/10.1177/1468794106093634).

These emancipatory and change narratives move the question from ‘what is’ to ‘what if’ to ‘what might happen next’ (Wittmayer et al., 2015, http://www.transitsocialinnovation.eu/content/original/Book%20covers/Local%20PDFs/181%20TRANSIT_WorkingPaper4_Narratives%20of%20Change_Wittmayer%20et%20al_October2015_2.pdf). Individual stories of both oppression and empowerment, when shared, become narratives, and these narratives motivate change and become master narratives that challenge oppression and incite collective actions.

Narrative Data Methods Support Social Change Using Peer Research

I was privileged to be able to teach narrative therapy to graduate students, and it informed my approach to teaching and emancipatory science. Narrative therapy revolutionized psychotherapy just as narrative medicine revolutionized clinical practice by encouraging new stories and productive scripts to build courage, curiosity, and competence.

All social innovators in the new social movements study used narratives to disrupt stigmatizing master narratives by using their experience as examples of new stories of liberation and emancipation. Henry Three Suns used Native wisdom traditions to inform Indigenous child welfare; Gerry Kinsella adapted the root metaphor of David and Goliath to challenge systemic discrimination of persons with disabilities; and Dame Cicely Saunders used Christian liberation theology to frame stories of dignity in dying. The integrated narrative co-design and research methods then informed peer research methods.

• Peer research with seniors championed narrative focus groups and interviewing methods that consolidated the importance of sharing stories in peer research. At the same time, I was teaching the use of stories in social construction to find common scripts in autobiographies that reconstructed identity after illness and disability.
• During co-design of PaCER peer research, patients shared stories to understand problems and find solutions. This was surprising to the early research teams who partnered with us, because they had believed that patients experience mainly vulnerability, loss, trauma, and deficit. They had not heard a different patient perspective of problem solving and wellness that promotes stories of experience, expertise, strength, insight, and problem-solving competence.

The Elements and Nature of Stories

In peer research, we search for methods that promote iterative data collection, analysis, and interpretation to create a more streamlined and simplified approach. Narrative data promoted both participatory practices and constant comparison. Narratives generally follow two basic patterns.

The first is the traditional wide upside-down V that begins at the bottom left with the setting of the story (the who, what, when, and where). The trigger starts the story and as the line goes up, we see the conflict or problem (the trigger that starts the story) and then the rising action. At the top of the V, the climax explains or resolves the trigger, and we have the falling action and the moral lessons learned to return to normal or a new normal at the bottom right. In healthcare the climax tends to focus on healthcare intervention.

Figure 7.1 Typical Pattern of Stories

In health research, we tend to see an upside-down V. A story begins with a line that depicts everyday life, then a downward slope that depicts the experience of health problems. The slope can be gradual or steep, smooth or rocky, but most frequently it levels out as the person begins an upward climb to a resolution. That can include rehabilitation, a new normal, or even finding themself in an improved situation.

Figure 7.2 Anticipated Pattern of Health-Related Personal Health Journey

This storyline reflects the dominant story of healthcare that begins with the experience of a patient during the onset of illness, trauma, and loss. When told by healthcare professionals, it is assumed that the patient will engage professionals during this time, who will then diagnose the underlying problem, slow the fall, and provide treatment to recover. The subtext of this healthcare story is one of patient vulnerability and fallibility and the ability of professionals to respond to patient needs and guide them to the new normal.

This does not include those with conditions that arise early in childhood, where the journey has not established a base. Here the goal of the journey is an uphill climb over time, the journey from the bottom of the above figure.

Figure 7.3 is presented to offer a very different picture of a patient story, done by a group of patients living with chronic illness. The story itself was difficult to find because most of the co-researchers and peer researchers involved in the research were at different stages and had different healthcare pathways. The final storyline or theory called upon what had happened, what was happening, and what might happen in a sequence of substories. This created a very powerful storyline of the hidden pathways through chronic illness. The patient story is here presented as a poster that aligns with the clinical story and professional opportunities for engaging patients.

Figure 7.3 Hidden Pathways Through Chronic Illness

Note: Credit: Zelinsky, S., Marlett, N., & Shklarov, S. (n.d.), Hidden pathways diagram. Source: Banerjee et al., 2013, http://hdl.handle.net/1880/109953.

This theory creates a series of hidden pathways, with each stop along the way a chapter of regaining control of a chronic condition. The dynamic feature of the patient pathways is the dynamic representation of increasingly autonomous destinations as chronic conditions, health, and relationships change. This patient research of chronic conditions creates new options to support shared decision-making between patients and health providers as indicated in Figure 7.3.

Peer research storytelling in a group captures the ability to respond to past, present, and future storied destinations. At the end of each interview or research group, participant co-researchers are invited to identify and analyze the stories that were told with the peer researchers. This ensures that stories are complete and bring new meaning to what co-researchers have learned from telling the stories. It is also possible to apply the properties (the who, what, where, and when) to inform the nature of their journey: the places, the type of professional providing care, a contact with a peer in the situation, a similar feeling, a strategy.

Common Types of Stories from Peer Research

This leads to looking at the types of stories that are told in peer-to-peer settings:

• Health-related survival stories, where the threat is identified and attempts made.
• Esteem stories, where overcoming health problems are celebrated.
• Personal growth, where the opportunities and challenges lead to the capacity to try new things.
• Action or adventure stories about a quest to find an answer, take control, be a different you.
• Mystery stories, where you and others look for answers.
• Comedies, where threats and low self-esteem are challenged by unexpected positive experiences.
• Journey stories that track stages in recovery or acceptance of disability or death.
• Teaching stories that describe how new ideas and skills can be achieved.

Elements of Stories Told by Patients for Patients

We now look to the similar structures of stories as used in research. Stories are composed of major elements: the title, context, the incidents, plot, consequences, and meaning. These elements form the basis of the story format used in most narrative research.

The title of the story names (codes) the story that has meaning to the teller of the story (in vivo code). Titles often change when stories are shared, and in the end the title of the story acts as a major theme of what happened, is happening, or could happen.

The context includes properties that define the nature of the story, the actors, the places, the social situation. Properties are identified by who, where, when, and other questions that categorize stories.

The plot, the movement of the story is a sequential accounting for the actions of a single story, but elements of the plot may become known from other stories and thus can be used in several plots. This allows for detailed understanding of the movements within the trajectory of the story through the focus on properties of how, why, and then.

The term incident can refer to short abstractions of actions that include actors, actions, and outcomes. These incidents provide a bridge between grounded theory and more traditional thematic analysis. Grounded theory, especially participatory grounded theory, is adept in using and comparing incidents that can be analyzed using properties of narrative.

The ending, consequence, outcome, or moral of the story marks the end of a story. It tells what has been learned in the telling of the story and may suggest the beginning of the next story. The ending marks at least a partial resolution of the situation that triggered the story as indicated in the diagrams of story frameworks above.

Narrative peer research uses a standard story template to explore a story’s properties during data collection, managing data, data analysis and interpretation, and theory. The template promotes iterative story presentations that evolve from personal stories to shared/collective stories that act as narratives. The format remains the same, but the nature of the incidents evolve from personal to collective stories and, in peer research, to scripts for action that challenge systemic discrimination, policy triggers, or social innovation.

The following is an example from Indigenous co-researcher Henry Three Suns. He is talking about how sports and competition allowed reserve students to learn how white society worked.

The first transcription is typical of many transcripts here, presented using a transcription that captures the speech rhythm that reinforces the intention and meaning by starting a new line with each pause in speech rather than traditional transcriptions that force grammatical structures onto oral data.

We were exposed to other schools in high school

Mostly white schools

In sports and the like

And we were led to believe that you could be as good as the other person

And we won a lot of high school matches

And to prove to ourselves that we could do well

One of the prides of my life is the provincial basketball championship

We won

That was an accomplishment

You get appreciation from the province and the family.

(Henry Three Suns; Marlett, 1996 thesis data)

Notice how the following list is presented as incidents of the above content that occurred as Henry and I discussed his initial story. The language used is Henry’s but reflects an initial analysis of what the story contributed to his work.

In high school we got to know white kids

Coaches said we could be as good as them

We won many high school games

We won the provincial basketball championship

I was proud of our success

The province and our families appreciated our achievements.

These incidents could then be sorted into different categories of ‘learning about white society,’ ‘competing in sport,’ and ‘new ways of being together.’ In the final theory, these incidents led to a category of ‘Indian Briefcases,’ which spoke of a time when Blackfoot members who had learned about white ways began to negotiate with those in power. His grandmother laughed as he tried to work with white officials, saying “you just have to use white people to practice on until you can figure it out.”

In later narrative peer research with seniors, the peer researchers used the template while listening to the tapes to fill in the story template, which avoided full-text transcripts. This made it easy to record incidents within the template and allowed them to compare the stories using the templates to combine and rename stories as they were shared.

The value of the use of incidents as individual units of analysis is that they can be detected and recorded directly as focus group, interviews, and observations stories. The incidents can be written verbatim during data collection and then shortened during analysis and interpretation. Incidents are easily recognized by participants but remain private when reported in categories and quotes that are recognized both by participants and effective in oral presentations and publications.

Metaphors Act as Stories to Explore Meaning

There are five main types of the figurative language—metaphors, similes, personification, hyperbole, and symbolism—that provide ways to understand meaning within stories. Metaphors are the most commonly used tool by citizens and were common as patients struggled to explain their experiences and their expertise. They represent meaning and values when there are few words to explain what is happening. Metaphors can suggest actions, feelings, outcomes, or expectations, and are treated as incidents. “My body was limp like a rag doll after the accident,” or “I felt warmth, like sunshine that sinks into me.”

Root metaphors are used to find a way to make sense of how our lives are changing. “Life is like weather,” “I think like a computer,” “I seem to have become my electric wheelchair.” Root metaphors can introduce shifts in understanding over time. “I remember my childhood as a time of sunshine and clear skies,” or “I can only try to avoid the hurricanes of my bipolar life.” In this way, metaphors are windows to worldviews that lie beneath the surface of competing worldviews, which might stifle or negate possible change. These worldviews are often held in our most protected and often unconscious levels of thought.

Common metaphors are often captured in slogans and sayings. “Black lives matter,” “nothing about us without us,” or “ban the bomb.” They are found on plaques, social media, graffiti, and are particularly useful online or in health settings. They often capture the goal, the outcome, or the expectations of marginalized people.

Metaphors provide the data for deep analysis and questioning during research and the participant co-researchers should be invited to explain the metaphors they use in relation to the research being done. Metaphors uncover sources of institutional bias and examples of unexpected success.

Emerging Directions in Narrative Analysis Suggest a Framework for an Integrated Narrative Science in Peer Research

This section attempts to locate the use of narrative in peer research compared to an exciting narrative framework for qualitative narrative research by Roest et al. (2021, https://doi.org/10.1186/s12910-021-00691-7). The original four quadrant process proposes a four-step narrative analysis to guide research projects.

• The first cycle of analysis is in vivo coding to capture incidents within stories. This relates to the use of the story template in peer research to locate incidents within the context, plot, and consequence of stories. In vivo coding is the first level of analysis of data collected during observations, interviews, focus groups, and online patient self-help platforms. The structure of the template enables analysis to move through all four cycles as stories are combined and divided as concepts are identified.
• The second cycle of analysis employs features to interrogate incidents. In peer research features are related to properties used in classical grounded theory, but the intent and outcome is similar. Peer research focuses on properties that relate to each stage of the research:
  • SET: Co-design of the main concern, properties of who, where, what happened, and what then. These help categorize concerns for prioritizing the focus of the proposal.
  • COLLECT: Iterative data collection and analysis to inform the main concern to search for possible solutions. Properties include who, what, where, when, why, and why now, then.
  • REFLECT: Choosing the best solution to the main concern that is feasible and important to patients using properties. Properties include how the story relates to the main concern, why it works, what is anticipated if it was implemented, and who would implement it and how.
  • INNOVATE: The properties now shift to implementation, such as who will conduct the design of the solution, what is needed to ensure it is EDI compliant, who will pay for the solution, how will costs be covered.
• The third cycle of analysis relates to context of the analysis, by consolidating themes through the various forms of data collection and analyses. In peer research, constant comparison is inductive in that the findings of each step decides the direction needed to extend or challenge the findings until a best solution from a patient perspective is found for the main concern of the research. The equivalent analysis in peer research begins with COLLECT and continues through REFLECT and INNOVATE in an attempt to tell the story of the iterative process and how each step informed the final solution.
• The fourth cycle of the Roest cycle is the synthesis in light of the research question and what has been learned about the methods and the research findings. This cycle in peer research takes place early in the process as the peer research team becomes part of the sponsored research team, sharing emerging findings and challenges. As the REFLECT process identifies how the research informs a patient perspective of a solution to the identified main concern, there is an opportunity to reflect on the narrative data processes informing the research and how it builds bridges to implementation from a patient perspective.

The above exploration of peer research and the qualitative narrative analysis methodology of Roest highlights the shared importance of in vivo incidents and the use of features or properties as analytic tools to interrogate incidents and stories to capture what has happened, is happening, and what could happen. It solidifies the action nature of peer research that focuses on patient concerns and solutions. It also highlights the use of a standardized template to facilitate analysis in peer research that also maintains the integrity of stories to support the evolution of in vivo codes as part of iterative analysis.

In the final chapter, it was finally possible to complete a narrative form of analysis that maintains the integrity of the story as data, method, and theory throughout the engagement strategy of SET-COLLECT-REFLECT. It has not yet been tested, but it builds levels of analysis by using story properties from individual stories of personal concerns that captures the power of story. The next stage encourages sharing stories through the power of narrative to capture concepts that have meaning at the level of the group. The final stage uses past concerns, the current understandings, and potential action-based stories that aspire to suggest potential solutions as the collective expertise of patients who are willing to share stories to make a difference.

The End Goal of Narrative

“Sharing stories to make a difference” was first coined by an Indigenous community researcher as a way to define what PaCER research meant to her community.

The end goal of narrative is to produce stories that are so powerful that they hold narrative truth. For example, the following tale by Dame Cicely Saunders, founder of the modern hospice movement, is an example of a challenge to the existing health discourse for dying patients. In an infectious and gentle manner, the challenge is implied, not shouted. The medical discourse of loss, fallibility, and dependence is challenged through a simple story:

Always I remember Helen’s laughter. She had a delicious sense of the ridiculous, and especially of the ridiculousness of her own crippled body. She neither pitied it nor hated it—there it was and, like everything else in life, could be laughed at. From behind the curtains came muffled giggles from the nurses, from the bathroom came quite uncontrollable laughter. (Cicely Saunders, 1988)

Helen’s story challenges most of the stereotypes of severely disabled people—the lack of respect for their condition, the sadness of disability, objectivity and non-involvement of staff. This one small story undermines medical, professional, and charity discourses about disability. Stories such as these challenge prevailing oppressive discourse by presenting a very different story of joy and friendship that clashes with what might be approved.

Shared stories often tell about the strengths of patients and communities, in contrast to the weaknesses implied by the dominant medical discourses. For example, those who were part of the new social movements thesis had been defined by political and professional labels or experiences—patients, disabled, prisoners, Aboriginal peoples, that defined how they were distinct from general society. Collective stories as narratives and metanarratives of emancipation are about challenging power, risk. This enables us to combine individual and collective strength to achieve collective action. The following two collective stories are examples:

There is a great deal of camaraderie among disabled people

Telling stories and laughing at themselves

I don’t think that really happened until the grassroots movement got off the ground

When the professionals were involved

You just didn’t tell jokes about how crazy it was to be in a wheelchair

But now we tell all kinds of stories

Even jokes about sexual feelings

The professionals thought it disgusting

That created a certain sense of community

Of bonding among the group by challenging professionals

(Henry Enns, Disabled Peoples’ International; Marlett, 1996)

All story types have the potential to be emancipatory when they share themes of personal competence, purpose, or contribution. It is about finding and sharing inner authority and finding our preferred roles. This empowerment shines in the comment from Debbie (D), a trainee and apprentice trainer at Greenbank training centre in Liverpool, UK.

N (Nancy). Did you find a difference between the disabled and non-disabled staff when you first came to Greenbank?

D. Yeah. I didn’t trust anyone who was able bodied.

N. Are you like that still now that you’re becoming staff?

D. I’m less likely not to trust anyone but I’m not blind anymore

When Gerry says ‘come on you, you can do that’, I know now that he’s pushing it

You know, I think he’s not exactly me

He may be close

Like what I can do in a chair

The disability and the handicap

But he’s not a woman and doesn’t have the same problems

(Debbie, Greenbank; Marlett, 1996)

Advances in Narrative as Part of Innovation

The use of stories in innovation needs stories of what might happen, what could or should happen. These are the stories of anticipated and hoped-for futures. If you are interested in this field, recent developments in narratives of change provide exciting ways to use this chapter to understand social innovation by identifying hoped for, anticipated, and feared futures (Wittmayer et al., 2019, https://doi.org/10.1016/j.futures.2019.06.005). The narrative approach above can also be used in design thinking. There are already many narrative or storied methods being used for user story mapping, projects defined by stories and standardized epic story formats to track progress during prototype testing in design thinking.

Stories and narrative analysis continue to evolve in health research as this manuscript expands to include social innovation in health. New narrative opportunities in design thinking can also be used in qualitative and peer research. These methods are expanded in Chapter 11.

Summary

Stories are the way people share experiences of health and healthcare. Patients with direct experience across settings, transitions, professionals, levels of care, and organizational structures are able to study and share stories of expertise and hope for futures that lead to narratives of change. The ending to a peer research story becomes a practical theory that is useful and meaningful for patients, the public, health systems, and health research.

We realized that the use of narrative methods overcame many of the obstacles that made classical grounded theory seem difficult, lengthy, highly conceptual, and open-ended. The systematic use of stories challenged these assumptions. The major question is perhaps not if patients can conduct classical grounded theory, but if classical grounded theory analysis and practice benefit when simplified through the use of a narrative methodology. Just as Glaser and Strauss (1967) predicted, grounded theory can be done effectively by those without extensive disciplinary training, and we came to believe that the use of narrative made grounded theory even more plausible as a force for social change. Stories and their analysis provide the link between classical grounded theory and the science of engagement.

Questions for Discussion

1. Select one of your favourite stories about a health-related incident. Think about how it began as a story and may have informed narrative or metanarratives that you now hold. Share your findings with others.
2. Write your personal experience in a story template and, if you are intrigued, conduct a basic narrative analysis using the set of questions to identify properties.
3. What obstacles do you see in using narrative in the research you have been involved with? Where do these obstacles come from and how could narrative be adapted to support inclusion?
4. What similarities do you see between narrative medicine and peer research? Have you encountered narrative medicine or therapy in your training or practice?

Resources

• For those interested in a practical guide to the use of narrative, this lay report by Mitchell and Egudo (2003, https://apps.dtic.mil/sti/pdfs/ADA421725.pdf) is short and comprehensive. This can be used as an extra resource that is designed for frontline workers.
• Narrative foresight becomes necessary when creating narratives for social change, as explored by Wittmayer et al. (2019, https://doi.org/10.1016/j.futures.2019.06.005).
• There are other practical reasons for health researchers to engage patients in peer research using narrative. At the foundational level, narrative methods have made inroads in quality improvement research (Greenhalgh et al., 2005, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1744090/pdf/v014p00443.pdf), and there is an increase in patient experience collections that capture personal and family stories:
  • “Why Study Narrative?” (Greenhalgh & Hurwitz, 1999, https://doi.org/10.1136/bmj.318.7175.48)
  • “Database of patients’ experiences (DIPEx): A multi-media approach to sharing experiences and information” (Herxheimer, et al., 2000, https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(00)02174-7/abstract)
  • For an example of how medical facilities are incorporating social media into their online resources, see Sunnybrook Hospital’s Video Library (n.d., https://sunnybrook.ca/content/?page=youtube-video-library)

1. Narrative Analysis of Autobiographies: An Example

The following case book summarizes the elements of student research done on over 100 autobiographies to learn how to analyze citizen stories to understand the process of personal growth and resilience due to illness and loss.

2. Narrative Analysis Used to Uncover the Social Reconstruction of Self After Health and Disabling Condition

The author of this excerpt was a student in the narrative analysis class. It has been revised to remove any identifying information.

Choose five key stories from the trajectory above and repeat the following analyses for each story. Copy the templates for each story.

3. Playing Out Scripts

This exercise creates a space to think about the final step in understanding personal truth—the wisdom that the person has to offer from their journey through disability and health concerns.

While people tell individual and unique stories, they do so with recognizable underlying scripts that provide the structures for what roles they play and what they expect of others. Once you have identified common scripts in your text, take these scripts back to the data set of 20 stories to see which stories are told from these common scripts. Identify other scripts in your 20 stories. If possible, take your script discoveries to other stories in your autobiography to find other scripts.

As you begin to understand the purpose of the script (agency and self-regard) you can begin to understand the path taken by the author in finding meaning through adversity.

References

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