2.7 Narrative theory and methods for Peer Research
‘Methodologies, after all are stories too’ (O’ Flaherty,1988 pg. 2)
‘Stories after all, are methodologies too’ (Marlett, 1996, pg. 161)
- The power of story in identity, community building, education, social innovation, 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
While health science is located in silos with publications protected by coded language and structures, narrative research brings new voices and perspectives to research that increase transparency and impact. As such narrative supports the growing pressure to democratize science, especially as part of citizen science as a community development. The following link to a special edition on storytelling in citizen science Issue 05, Special Issue: Stories in Science Communication, 2019 demonstrates the range of use of stories in all aspects of citizen engagement along with theoretical models of how stories facilitate community and school based research. Narrative using new social media platforms is transforming communication and how we do research.
This chapter could not have been written without the inspiration of researchers who were experiencing health concerns. They used their unique dual roles to explore how direct experience enriches and informs scholarship. Dr. Art Frank, a sociologist at the U of C, wrote about his experience with cancer in the Wounded Storyteller (Frank,1995) and created a new genre of health sociology that encouraged academics to explore narrative. Kay Refdield Jamison, author of her autobiography, An Unquiet Mind (1995) laid the groundwork for a range of academic and popular books that brought new light to bipolar disorder.
New research directions such as narratives of change (Whittmayer, Narratives of change: and narrative foresight. Milojevic, The power of storytelling and video: a visual rhetoric for science communication provides democratic, participatory structures and action research to address the surge of potential of narrative approaches in citizen science.
The narrative ideas included in this chapter represent a very narrow spectrum within the vast and deep universe of story, narrative research, and theory. We deal here with two goals of emancipatory science; exposing systemic discrimination and supporting empowerment as a prelude to creating change narratives to guide social innovation. When patients and communities deconstruct or take apart institutionalized narratives of compliance, they envision the changes needed to flourish and become key stakeholders in their health, health care and health care transformation.
Before beginning this chapter, take time to link to ‘Losing our stories’ presentation in PRISM (Losing Our Stories: Early Experiences of Individuals Facing Mental Illness ) that explores the insidious loss of personal stories and identity when people become part of the mental health system. Look at the results and discussion as an example of how compliance and becoming your diagnosis was challenged by a common story of reconnecting.
A Peer Research approach to Narrative
Stories are the data of peer research, where stories are considered incidents to be units of analysis to be compared, coded and categorized in order to explain, describe and suggest emancipatory action. These incidents can be full stories, fragments of stories, the beginnings, plots and endings of stories. They can also be representations of story such as metaphors, strategies, songs, pictures, films, advertisements or and common slang or sayings.
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 that are reinforced by standardized labels, diagnostic tests and surveys that support a one size fits all belief about the experience of each diagnostic category. These patient stories are adopted and embodied because they open the door to the clinical pathways that define expectations, roles and the relationships. People refer to themselves as their diagnosis and their stories are about healthcare.
This loss of personal stories not only changes the content of stories, the characteristics of stories change as well. Patient stories lose their individuality and singularity within the context of the collective patient role and the shift from the personal to aggregate experience. Peer research might begin with these compliance saturated stories but seem to pivot to reclaiming their perspective on the health care they receive or would like to receive.
New practices emerging from artificial intelligence and machine learning to identify patterns and make decisions require a patient perspective that has been reclaimed from the expectations of health systems. Just as physician narratives and notes made significant advancements when added to machine learning, so too will direct patient experience increase the power and usefulness of machine learning about patient experience. The final result will be patient informed algorithms for treatment options.
Strengths of narrative
There is an extremely broad spectrum of why storytelling and narrative is important in citizen science, health science, science communication and narratives that foretell futures. Some of these are suggested below to convey the scope of narrative
- Stories make sense of illnesses and healing
- You listen to a story as if you were in the story and this increases memory
- Stories look back, process the present and forecast options of what could be or should be
- Stories begin in chaos and in the telling and retelling make sense of the unexplainable - medically unexplained symptoms, novel health situations such as Covid 19 and emancipatory achievements, post-traumatic stress
- Stories can sell ideas that are complex
- Stories are windows into traditions and cultures that are hard to access.
- Finally stories are subversive, they expose official stories and the counter narratives told by frontline staff or patients.
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 they decide to engage patients and communities in their research. My PhD study began in the midst of fierce debates over appropriate roles for researchers in participant or partnership research. In Women's Words (Guckand Patia, 1991) 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, 1986, 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.
- The researcher analyzes and interprets narratives on his own with no contact after data collection
- The researcher has the subject verify the transcripts
- The researchers completes the project and shows it to the subjects for verification
- There are opportunities for separate roles for narrators and narrative researchers
- The researcher and the subject enter into an ongoing dialectic about meaning and arrive at a joint product
- The researcher is the scribe representing stories told
None of these reflected the nature of our roles at the beginning of the new social movements case studies, but our research relationship grew into partnerships which reflects 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. Peer research is an interaction controlled by role expectations. If the role is not discussed openly, participants are left to construct their own roles, thereby producing data constructed within their assumption of who they were and why they were telling the story. This basic misunderstanding challenged the scientific assumptions and the veracity of the claimed results.
I quickly came to see that all research, and co research in particular, needed to include a process of good faith negotiations of roles and expectations that were no different than negotiating roles in counselling, teaching or health care. 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 want to know why they had been chosen so they could share how they saw themselves, their expectations in light of the risks, costs and potential benefits. Without this foundation, two separate versions would result from each party’s best guess of what was being created and what that meant. This negotiation was the foundation of the co research social contract development in chapter 2.
Individual stories allow people to share experience and to create shared stories that can be analyzed by academic researchers, co researchers or the story tellers themselves. Peer research brings new scope to the study of real life experiences. Historically, ethnography was the study of a culture, social institutions and communities by a researcher who attempted to immerse themselves in the culture. The Peer researcher is embedded by virtue of being a member of the group studied.
In Canada we see this through the powerful participatory and action research done by trained peer researchers within the HIV/AIDS community https://pacificaidsnetwork.org/. This natural partnership between researchers and peer researchers reduces the ethical and scientific challenge of imposing theory on vulnerable populations. At the most inclusive level, stories of expectations explain and resolve problems. Stories enable people to analyze their experience and try out new versions through trying out new endings and new beginnings that could point the way to increased capacity in the future. The role of the researcher in community narratives continues to challenge research that relies on the past and present, hopefully narrative research about futures will create new ground to explore roles and relationships.
How narrative improves health research and care
The link below identifies the ways in which story and narrative impact not only our ability to process information, but to use and remember it. 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. 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.
Stories 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 are 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, in education and therapy but it has not penetrated the shields around health research.
In 2014 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. The European WHO, Health Evidence Network produced a report, the ‘Cultural Contexts of health: the use of narrative research in the health sector (Greenhalgh) (https://www.ncbi.nlm.nih.gov/books/NBK391070/)’. The WHO 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 identified strengths and limitations of using narrative to identify shared values and meaning related to culture in the following list:
- 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 that “rigorously conducted and analyzed narrative research can complement the findings of randomized trials, observational studies and routinely collected data of various kinds. It can inform hypothesis-driven studies and refinement of survey instruments. It can explain the failures and partial successes of past policy initiatives and inform the introduction and implementation of new policies”. Data storytelling has been called the last 10 feet of research where it creates a coherent and compelling narrative to share data results. https://www.nugit.co/what-is-data-storytelling
The above primarily refers to the use of individual stories of patient healthcare experience. However this is only one of three commonly understood levels of narrative.
Levels and types of stories as they relate to health
This section describes how personal stories take on the character of community narratives when they are shared. These narratives then grow into master narratives 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.
Stories: the level of the individual, personal events
Henry Enns, a founder of Disabled People’s International, connected with groups of disabled people around the globe through sharing 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 inadequacies but about the common lack of society planning to make access to buildings ( especially bathrooms that claim to be to accessibility code- except for wheelchairs) employment and housing a priority.
The word story comes from the French ‘histoire’ or history. A story is, in effect, an account of incidents or events, recalled or anticipated. In most northern countries it 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. In many ways the structure of the story follows the fairy tale format: a hero encounters something strange or a challenge and perseveres and is rewarded at the end of the story.
Stories reflect cultures through different structures and forms. For example, the sacred stories in indigenous communities include elders, the land, and ceremony. Indigenous peoples in Canada’s west tell stories through totem poles, or with parallel plains sign language. The parables, originally a Jewish style of storytelling, disrupt thinking about everyday life. Something unexpected happens in order to provoke thinking about how God might work in everyday life.
The story template is used as a framework for collecting, transcribing and interpreting stories. Placing data into this simple depiction of the beginning, middle and end of the story is, in effect, a first step in analysis that identifies data according to the structure and function within the story. In this regard it translates a personal story to a narrative because the structure brings meaning that can be shared, compared and combined with other personal stories.
- The title of the story captures the meaning of the story as a unique incident.
- The context of the story includes the properties of stories, the who, what, where, when that set the stage by locating the stories in time and space along with the roles actors play
- The trigger: the ‘why’ the story began.
- The plot; the ‘what happened’, telling the story as a sequence of events in time
- The consequence: lessons learned and meaning is conveyed in anticipated or preferred outcomes.
Stories as told, are accounts of what happened and convey a personal truth, framed by the reason for telling the story and the person's individual style. As researchers, our desire to validate people’s personal truth may lead to confusion. Traditional research practices often obscure relationships between events and experiences and to disrupt the individual’s attempts to make a coherent sense of what is happening to them and around them (Mishler, 1986 page 105).
The need to recognize the existence of personal truth became apparent when I realized that it was impossible for me to speak about the life world of a co researcher. Her story of experience, in her voice, provides direct insight into possible categories, priorities, codes, and possibilities from a patient or community perspective. My interpretation of an individual’s personal stories was framed by my life world and perspective that coloured my understanding of what was happening. I could not represent my interpretation as being more meaningful than her’s. The magic happened when we shared interpretations, our discussions produced a combined personal and academic representation and interpretation.
The quality of partnership research is increased when search for personal truth is framed within patient and community experience. The researcher can provide insight into the generalizability of the findings as the findings represent classes of groups with whom she shares life worlds.
A young man or woman 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.
In summary, personal stories of direct experience inform much of health research. This makes sense because medical treatment is individualized. Few patients become part of a health related group.
Narratives: the level of shared meaning in the group or community
Telling the stories of John’s humorous attempts to play rugby on the high school team became the glue of the Friday pub nights for years, long past his death. His stories were what defined their camaraderie and acceptance of each other’s successes and failures and the support that sustained them.
The meaning of narrative comes from the Greek ‘Gnare’ or meaning. Narratives are the primary scheme by which human existence is rendered meaningful. This comes from social construction theory that ‘the meaning of things arise out of the social interactions one has with one's fellows, (Blumer, 1986, see Symbolic Interactionism, perspectives and methods). Stories take on value and meaning as they are shared and repeated in different contexts, with different people for different purposes, and in the process they become narratives. Narratives are the fruit of shared experience and in health, shared programs, clinics, outreach and community supports. These social organizations are the seedbed of health narratives.
A peer research project is a group that comes together to share common experience. The process of sharing individual stories in the group creates narratives. The process of sharing and collaborating as part of analyzing and interpreting stories develops new collective knowledge in the form of narrative.
Narratives outline problems, diagnose causes and suggest solutions (Roe, 1994). They link to time, space and previous action to gather meaning. Narrative opens an opportunity to study how to break the dominance of the past over the future (Lissandrello and Grin, 2011), by imagining how current events can be challenged and transformed.
I was working with the founder of Greenbank to code a story about professionals who tried to take over 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 title of the story ‘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 to be prepared. It was not a threat but a fact of doing business as social innovation.
The new meaning brought action into the story. Which one was correct? In the end, it didn’t matter. What mattered was that the title or theme had changed to bring action and power to the overall storyline. It demonstrated how important it was to engage to clarify meaning.
Narratives evolve as a story responds to new challenges and as members share and retell their stories. Narratives are the brand and the slogans of change - Black lives matter cover the many instances where people did not matter. Within health, stories about patients evolve into narratives told within different professional enclaves and these narratives are often based on disciplinary expectations instead of the stories told by patients.
The seniors in the Grey Matter study were motivated to confront geriatric and gerontological narratives of loss, ‘downhill slide, decrepitude and burden of care. They were looking to challenge these health care narratives with examples of resilience, personal wellness and peer support. They found these challenging narratives through sharing stories of experience and creating narratives or 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. Their narratives were the theories that explained their experience and their ability to respond to adversity. These narratives were the brand or the slogans of emancipation and defined who they were and could be in society. (Refer to Appendix 1 in Grey Matters, Resilience as Social Capital)
Narratives also create the impetus to change practice. Charrons 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. Narrative approaches to understand immediate patient experience also provide connections to previous experience and anticipated futures.
To summarize, emancipatory narratives capture the struggle to overcome prejudice or marginalization and in the process these narratives challenge the existing accepted professional or political discourse. A narrative is a story with a purpose, it conveys something new or different from the expected personal story. These collective stories suggested new roles and relationships, and the way we see ourselves and relate to each other (definition of social invention (Conger 1984).
Master or Meta Narrative: The Discourse Level of Systems and Society
The story of Terry Fox became an example of Canadian social discourse. He courageously challenged cancer through running across Canada and in the end cancer won. His story of courage in the face of a common enemy spurred generations of Canada to run for the cure. This discourse is seldom understood in countries where only winning counts.
A response to the above story: We all need heroes, especially those heroes that are part of us -imperfect, struggling, but with determination and focus that perhaps we feel we all lack. We want people to look up to those who are not so remote from us. There’s no nobility without struggle.
Master narratives operate at the organizational and societal level. They are shared across situations, especially across those situations that hold power. These master narratives become dominant discourses when they justify political action, policy and procedures that define people as ‘outsiders’. The power held by experts and the systems that support them became a target of early emancipatory science. They 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.
Master narratives, when they are expressions of counter culture, trigger imagination and are a tool or resource of empowerment. In many ways, emancipatory meta narratives provide the link between narrative and social change. They identify change in social relations, new ways of doing, organizing, framing and knowing. Narratives of change therefore consist of a set of ideas, concepts, metaphors, stories of innovation that motivate people to act.
Emancipatory narratives tell why the change is needed (what is the social problem that unites us) and tell about the systemic forces supporting oppression. They also identify who has the power and how change can be promoted. They do this by opening up novel ways of looking at things and new possibilities for action. This is the topic of chapter 9 which is about systemic analysis of health care discourse from two perspective: systemic discrimination and collective empowerment. They reflect and at the same time create reality by challenging the norms, values and beliefs of the dominant discourse. In the process challenging or emancipatory discourses devise alternative futures.
The most important aspect is how power is enacted. If it helps the individual or the group to live a better and more productive life- to flourish, the discourse is worth telling and retelling. These master narratives or discourses can become a key resource for changemaking. They are the overarching storylines used to understand the nature of social innovation (De Fina. 2008, pg382). Change does not exist without changes to personal stories, narratives and discourse. Wettmayer, Julia Backhaus et al, (2015), support these master narratives of social change triggering imagination, and being resources of empowerment. These narratives of change move the question from ‘what is’ to ‘what if’ (Sools, 2012) to ‘what next might happen’ (Shotter and Katz, 2004).
In summary individual stories of both oppression and empowerment, when shared become narratives and these narratives that motivate change become master narratives that challenge oppression and incite collective actions.
A Narrative Theory of Health Care and Health Research
The following theory captures the potential role of narrative ways of knowing in health research. This theory is drawn from Polkinghorne’s theory underlying narrative therapy, which in many ways parallels the discovery of the power of narrative in peer research. Narrative therapy revolutionized psychotherapy; the therapist is not the expert diagnosing problems and offering solutions, the narrative therapist encourages the person to tell and analyze their own stories. The therapist becomes the listener responding and supporting their analysis and looking for stories that challenge the problem saturated stories in some way. The person is encouraged to find meaning in these challenging stories that they apply to their own life and in the process discover new stories and productive scripts to replace problematic scripts.
Narrative research invites participants to share stories of experiences that allow them to find new meaning in their stories. The result often explains a common, persistent problem that leads to sharing ideas about how to resolve or reframe the problem. That is why peer research is considered action research. Narrative therapy, narrative medicine and narrative research all encourage interactions that are emancipatory in intent and action. The following theory of narrative or family therapy was originally produced by Polkinghorne as a theory to explain the underlying action of therapy and I have applied this to provide a comparison to the theory of narrative peer researchpg.54, Polkinghorne in The Handbook of Narrative and Psychotherapy: Practice, Theory and Research
Narrative therapy was considered a tool for empowerment because it focused on assisting clients to examine their understanding of key events in their lives in order to challenge negative or constricting understandings so that they adopt more constructive actions. Similarly, narrative peer research and narrative medicine encourage partnerships that explore storied experience in order to understand a problem-saturated medical situation from a variety of perspectives.
There are four themes in the theory of narrative therapy that have enhanced the impact of narrative as a means of supporting personal growth and empowerment. These themes can also inform the partnerships between researchers, patients and communities interested in minimizing negative systemic forces and creating new roles and relationships (ie, stories) that enable patients to gain power and insight about their health and wellness. These themes are: emphasis on patient and community strengths; partnerships in research and health care; introducing a social constructivist approach to meaning; and, emphasis on a narrative or story form of sharing information and meaning.
Focus on patient and community strengths.
In counselling/therapy the move from a pathology to a strength based approach changed a focus on weakness and inadequacy to strength and capacity. The change to a focus on action and solutions is built on client strengths and uncovering surprising stories of strength.
Within the first few years of PaCER peer research a similar shift appeared as patients searched for ways to be more than the problems they experienced. They used phrases such as ‘being as healthy as is possible’ ‘finding ways to live a good life in spite of’. 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 not realizing there was a different patient narrative of problem solving and wellness.
The theory of Salutogenesis which depicts the two solitudes of health: disease and ‘ease’ or wellness, captures this distinction by celebrating patient expertise. Sharing problems may start with conversations about shared problems but peer research also leads to explaining the problem in order to find ways of coping and finding new meaning and purpose in life.
Partnerships between researchers or health care providers and participants
The partnership in narrative therapy is an active and equal interaction where the client becomes the problem solver and the therapist calls attention to and reinforces client strength, insight and problem solving competence. In the early stages of peer research, I drew on the traditions within action research where all in the group were considered equal. We saw patients becoming researchers formed partnership with oneself, understanding both patient and researcher roles.
In narrative research groups, participants and peer researchers share common experiences to understand, explain and resolve social problems through envisioning alternative story trajectories. The role of the peer researcher is not the same role as the co-researchers but there is reciprocity and equal voice.
Introducing a constructivist approach
This book is grounded in constructivist approaches because it is focused on the shared or constructed meaning of experience. Social constructivist principles, practices and theory are based on concepts created through sharing meaning. This also implies that socially constructed realities can be deconstructed and reconstructed.
Narrative or story forms of meaning.
Personal stories, narratives and master narratives convey societal meaning. All exist within a common story structure. Each story is configured from memories of events that hold meaning for the telling. The vast variety of story forms includes formal stories, incidents, metaphors, strategies, scripts and even stories enclosed in videos, social media, policy statements and protocols. Narrative psychology, anthropology, education and sociology each have specific frameworks to use the power of narrative within their arsenal of methods but the narrative forms in peer research that following a time honoured story template seem to work with many disciplines. Narrative as part of this science of engagement is pragmatic, it suggests ways to use narrative techniques to engage citizens and communities in the issues which mean the most to them.
To these we might add the following concepts that add to the theory of narrative in therapy, health and research. These are introduced as they arose during the incubation stages of peer research.
The pragmatic value of narrative research is clear, narrative is ‘good’ because it works.
This section introduces the evolution of narrative methods for peer research and how social innovators all used stories to disrupt stigmatized master narratives by telling new stories of liberation and emancipation that reflected the wisdom traditions of the founder and the communities they were part of. Henry Three Suns used tribal understanding of native wisdom traditions of colour, sound, traditional stories and nature to inform indigenous child welfare, Gerry Kinsella adapted the root metaphor of David and Goliath to capture the challenge to systemic discrimination of persons with disability and Dame Cicely Saunders, used Christian liberation theology to frame stories of dignity in dying.
During the development of peer research with seniors, we used and adapted the storied peer research methods to co design a curriculum that included observing, peer to peer narrative interviews and a new extended group method that promoted discussion and storytelling. By the end of the 4 year project, seniors co wrote Grey Matters (2010) that included their work in co designing narrative strategies and methods.
At the same time I was teaching the use of stories to understand social construction. Over a four year period students in Community Rehabilitation and Disability Studies were part of class research projects based on autobiographies using detailed narrative informed discourse analysis. The goal was to understand the social construction and reconstruction of self after health problems and disabling conditions. The analysis process is included in the appendix.
The curriculum and engagement strategy from Grey Matters (2010) was then used to train peer researchers for the Alberta Strategic Clinical Networks. The action learning cycle was used during the innovation stage to refine narrative peer research. The year-long internships demonstrated that narrative methods were a natural companion to grounded theory analysis.
Narratives also support the emancipatory nature of peer research as part of a theory of narrative in health, research and therapy
‘Good stories do more than create a sense of connection, they build familiarity and trust, and allow the listener to enter the story where they are, making them more open to learning. Good stories can contain multiple meanings so they're surprisingly economical in conveying complex ideas in graspable ways. Dec 20, 2017’ accessed on line Jan,2021
We begin with consent forms intended to protect patients and build trust by describing the purpose of the research, the method and how patients and their data will be protected. However, they are written to comply with ethical protocols and basic legal requirements. The structure and the language of consent forms threaten many from marginalized groups who are hesitant to sign any document that represents authority.
Trust can be enhanced by creating a story of the research from the perspective of patients and community members that can be posted on-line as part of the research project, shared with potential recruits, the programs they attend and patient organizations. These stories can include links to patient advisors, community members or peer researchers who can be the first contact. The stories in the social contract in Chapter 2 negotiated an understanding of the implicit goals of engagement, what was expected and when goals had been reached. This ensured that trust, safety and engagement was built throughout the research process.
Focusing research priorities with patients and communities
Peer research, done by, with, and for patients is best done with a clear focus that will guide the research process. Focus doesn’t restrict creativity, focus deepens and enriches research about the chosen concern or innovation. Focus enables explaining what is happening instead of relying on opinions and descriptions.
The elements and nature of Stories
In peer research, the mandate of engagement has led to the search for methods that would bridge the gap between data collection, analysis and interpretation to create a more streamlined and simplified approach. Stories became the bridge.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) as the line goes up we see the conflict or exciting force (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 of the return to normal or a new normal at the bottom right.
Figure 1: typical pattern of stories
In our study of health research, we tend to be a slight variant of an upside down V, which seems to convey most health related problems. This story begins with a line that depicts everyday life then a downward slope that depicts the onset of a health problem. The slope can be gradual or steep, smooth or rocky but eventually it levels out and the person begins an upward climb to a new normal or even find themself in an improved situation.
Life as normal
Illness, trauma, disability onset
Fall in function, cognition, emotions
Recovery and new normal
Figure2 Anticipated pattern of health related journey
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.
At the end of each interview or research group, participant co researchers are invited to identify and analyze the stories that were told. This is both a tool to ensure that stories are complete and to bring personal meaning to what they have learned from telling the stories. It is also possible to go over the properties (the who what where and when) and patterns between the stories told: the same place, the same type of professional providing care, a contact with a peer in the situation, a similar feeling, a strategy.
The story itself
Story: an account of incidents or events, recalled or anticipated. It includes a beginning that sets the context of the story, the middle is a plot or sequence of the events, conflicts or challenges that build to a climax that then leads to an ending, that indicates the impact and consequence of the story. In peer narrative research we use these three elements in the following ways:
- The beginning sets the context of the story. This generally includes properties that become very important when comparing stories
- Who, the characters
- When in the life of the main character this story takes place
- Where identifies the setting, the hospital waiting room.
- Why identifies the reason for telling the story
- The middle of the story includes the trigger that starts the story, and the plot or strategy of the story to convey the conflicts, challenges, opportunities that lead to the climax and the unraveling of the issues that lead to
- The ending that resolves the issues and tells of the new normal that is possible. The ending is also very important when analysing the stories because it tells of the consequences and learnings of the story.
Types of Stories
The ending of a story also confirms the character or type of story. As you looking over the stories that are told in peer to peer setting they seem to represent the following types of stories
- Survival stories where the threat is overcome
- Esteem stories where the result is an increase in your status
- Personal Growth, where the opportunities and challenges led to your 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 outcomes
- 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
Whatever the type of story, turning data into a story begins with taking the data of stories apart. You start by looking for: A story, a story fragment, metaphor, strategy or slogan that can be sorted and constantly compared and resorted. Let's look at typical parts of stories:
Stories as incidents
The term incident is used to denote a unit of data to be analyzed. This includes statements about what happens (in action research) or a description of a phenomenon ( experience) The following are common forms of incidents
- A story, fully formed, with beginning, and end. These full stories can be transcribed into story templates that provide a standard format used in data collection, managing data, data analysis and interpretation. The title of the story names what is happening, the context includes properties, the plot is the movement of the story and the consequence places the story as an anticipation of a new normal
- Incidents can be short summaries of actions or description that include an actor, action and outcome. These are captured using the language of the teller that are shortened and abstracted.
The following is a quote from Henry Three Sons, talking about how sports and competition exposed reserve children to white students and how white society worked.
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
That was an accomplishment
You get appreciation from the province and the family.
Henry Three Sons transcript, 1990, pg 19.
Notice how the following incidents are abstracts of the same content that could also be considered incidents. The language used in the incident is the same albeit in a shorter form. Each incident note conveys an action or idea as above.
In high school we got to know white kids
Coaches said we could be as good as white kids
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 as individual short stories were sorted into different categories of ‘Learning about white society’, ‘Competing in sport’ and ‘New ways of being together’. In the final theory, these incidents were part of a core category called ‘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’.
The value of the use of incidents as individual units of analysis is that they can be detected and recorded directly in focus group notes, interviews and observations even when they are not a part of stories. The incidents can be written verbatim during data collection, and then shortened or abstract during analysis and interpretation. Incidents are easily recognized by participants but remain private when reported in categories and quotes for presentations and publications.
Metaphors represent meaning and values when there are few words to explain meaning. Metaphors can represent actions, feelings, outcomes or expectations and are treated as incidents, My body was limp like a rag doll after the accident; I felt warmth, like sunshine that sinks into me. Root metaphors represent how we make sense of our lives. Life is like weather, I think like a computer. Root metaphors can introduce shifts in understanding over time. I remember my childhood as a time of sunshine and clear skies, 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 that might stifle or negate possible change. These worldviews are often held in our most protected and often unconscious levels of thought but may be tapped through metaphors that may be less threatening than the worldview itself.
Metaphors are often captured in Slogans and Sayings of groups and communities. Black lives matter, nothing about us without us. They are found on plaques, social media, these are particularly useful when online or in health settings. They often capture the goal, the outcome or the expectations of people.
Metaphors provide the data for deep analysis and questioning and uncover sources of institutional power, particularly in eligibility criteria this inactive, moderately obese woman in her 60’s may not be a candidate for surgery. They also enable focus groups to identify common metaphors used to describe current systemic discrimination and metaphors that
Emerging directions in narrative analysis.
The analysis of stories continues to expand. For example Roest, 2021 ( link) has consolidated a narrative analysis grid that complements the existing narrative analysis that has emerged as part of peer research. The following is an adaptation of the four step analytic process of analysis. The following table uses the analytic framework using narrative and grounded theory elements of a combined research method.
Use Invivo (participant) language in story template
-Does this story relate to the main concern, if not move to back up data
-Contex incidents (who, where, when)
-Plot incidents: and then, and then
-Consequence incidents (then, because
-include isolated incidents that exist outside of formal stories
Highlight quotes that capture the essence of the story or incident.
-How does this story relate to the main concern
-What was/is/could happening: What for or why
-Adjectives that describe emotions and pronouns that convey agency.
-The arc of the story
-Include representations of stories; metaphors, slogans, frameworks that underlie the stories- indigenous, gender, race, age
-Use the analysis of full stories and story elements to compare to other stories to create storied categories where the similarity is the code that holds the incidents together.
-Categories join and split and the codes change.
4.Using the coded categories
Use the information to define the main concern according to the findings
Explain the core category and how it relates to the main concern and organizes the core category
Use the explanation to suggest a coherent action plan to resolve the main concern.
3. Coding exists at the category level. The category codes are constantly compared to determine
-The strength of relationship to the main concern
- The ability of the coded category to explain the main concern
-The ability of the coded category to resolve the main concern
-The relationship with other coded categories
- Emerging patterns and emerging core category that best resolve the main concern.
Table 1 The narrative analytic framework adapted from Roest.
This adapted proposal of narrative analysis is presented within the analytic structure of grounded theory. The main difference is the use of incidents as units of analysis. Incidents are stories or statements of what is or has happened or what could happen. This solidifies the action nature of narrative and provides a four step process of analysis that focuses first on analysis in the original definition of analysis as the taking apart of data into small pieces in order to enable organizing data to find meaning. This is represented by the use of a story template to harvest and organize data into stories. This process was uncovered by the Seniors in Grey Matters as they struggled to create transcripts of audio tapes. They eventually refused to transcribe audio tape but found they could use the story template (link to example) to insert data related to the context, the plot and the consequence. They found it interesting to look for elements of the story, they used the language of the story teller (in vivo) and didn’t have to be concerned about syntax or grammatical structure. They had an advantage in that they could re-engage their participant
The second analysis questions the initial story template in order to explore how it relates to the main concern by using a set of questions that define the context, the plot and the outcomes. This step enables the analyst to understand the underlying, the current and assumed meanings to be able to explore and extend the scope of the emerging categories.
The third level maintains focus on the analysis based on in vivo code that could be considered the title of the story that captures the meaning. Each story has a title or code and when a new story is titled, the stories fall into a category that encompasses similar stories. At this point the incidents or story elements are also analysed to see if the new story creates a new category or reinforces the existing category. When peer researchers work in pairs or in small groups, the questioning process becomes efficient and focused. They can study a story, compare it to other stories and continually recode as new stories and incidents are identified in the data.
The fourth analysis has been underway from the beginning and this is the rationale for all action research - to explain the concern in order to resolve it. The action is focused and specific to the main concern. The core category is the one that best explains and provides suggestions for resolving or reconsidering the concern or focus of the study. At this stage the focus shifts to action and innovation. In systems based research, this harkens back to the system analysis and the standpoint theory to find a way forward to reduce obstacles or systemic discrimination. For innovation based research, this focus provides the rational and strategy that informs practical innovation goals .
Interpreting stories in the search for narrative truth
‘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.
‘Narrative truth’ is evident when the story is true regardless of its historical veracity because the story has utility and meaning for people’ (Spense, 1982). Some short stories are so powerful that they hold narrative truth as is. For Example the following simple 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 named.
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. Saunders, 1988, page 2
Helen's story challenges most of the stereotypes of severely disabled people; the lack of respect for their condition, the sadness of disability, the value of 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 could be expected.
Peer research often experiences a strong pull to empowerment as collective stories develop camaraderie through sharing both pain and humour. These 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 had been defined by common labels or experiences - patients, disabled, prisoners, aboriginals that defined how they were distinct from general society. Collective stories as narratives and metanarratives of emancipation are about challenging power, risk and experimenting, individual and collective strength and collective action. The following two collective stories are examples
We are separated by thousands of miles, different nationalities, culture, circumstances , backgrounds and power but I am convinced we are standing on the same base; we are the defenders of friendship and understanding and ‘morning is in our heart’
(letter from a prisoner to a Quaker pen pal)
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
We told 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
Enns, Disabled people’s international 74-75.
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 one’s role. This empowerment shines in the comment from Debbie, a trainee and apprentice trainer at Greenbank training centre in Liverpool, UK.
N. Did you find a difference
Between the disabled and non disabled staff when you first came to Greenbank?
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
If Grerry says ‘Come on you, you can do that’, I know now that he’s pushing it
Or I think You know 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
The following is taken from the results of the new social movement study.
Innovators, especially those coming from the target population, share a common reality. At some point in their lives, they experienced the damaging effects of being marginalized. Each had escaped from the potential harm of stigma and learned helplessness and become empowered in the process. They used their stories to motivate others like them or those they aligned with, to find empowerment, they encouraged others to make the stories their own and to help others understand new challenging stories to counteract oppression, abuse or marginalization.
In the search for narrative truth, collective or shared stories are no longer products in and of themselves but tools in an ongoing emancipatory process
Advances in Narrative as part of innovation.
The use of stories in innovation requires stories of what might happen, or what should happen. These are the stories of anticipated and hoped for futures. Recent developments in narratives of change (Wittmayer, 2015) provide exciting ways to use the above format to understand social innovation by identifying hoped for, anticipated and feared futures (link). 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, standardized epic story formats to track progress during mock up testing. Familiarity with narrative analysis especially would bring a new skill set to design thinking.
Stories and narrative analysis continue to evolve in health research as this manuscript expands to include social innovation in health. A new set of narrative opportunities are used as part of design thinking and these methods can be used in qualitative and peer research. These methods are included in chapter 11.
The following is an overview of the key findings related to the use of narrative in research.
Stories are the way people share experience health and health care. Those with direct experience across settings, transitions, professionals, levels of care and organizational structures are able to share stories of expertise that lead to narratives of change.
Narrative research tells a story about a problem that should and could be changed. It is about explaining the problem to find solutions. There is a new ending that suggests how to resolve the problem in the future.
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 CGT difficult, lengthy, highly conceptual and open ended. Many thought that it was impossible for patients as peer researchers to move into this rarefied and intellectual research domain.
The systematic use of stories challenged these assumptions. The major question is perhaps not if patients can conduct CGT but if CGT analysis and practice can be simplified through the use of a narrative foundation. Just as Glaser (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. The final word: Stories are the content that makes the link between CGT and engagement theory work.
You might consider thinking about one of your favorite stories about a health related incident. Think about how it began as a story and may have informed narrative or metanarratives that you hold. Write it as a story template and if you are intrigued, conduct a basic narrative analysis.
.For those interested in a practical guide to the use of narrative,the following is a lay report that is short and comprehensive, Mitchell and Equdo, which is available on line. https://apps.dtic.mil/sti/pdfs/ADA421725.pdf This can be used as an extra resource that is designed for front line workers.
The following link to narrative foresight that becomes necessary when creating narratives for social change. and narratives of change Narratives of change: How social innovation initiatives construct societal transformation - ScienceDirect
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. (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. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1114541/ , Database of patients' experiences (DIPEx): a multi-media approach to sharing experiences and information - The Lancet,
Our Video Library - Sunnybrook Hospital demonstrates how medical facilities are incorporating social media into their online resources.
The following table summarizes the elements of student research done on over 100 autobiographies to refine the Standpoint theory and identity and describe transitions.
Data collected and analysed
1. The Stories
Title for the story
The title represents the story. It often includes the words of the story teller. The title stands for the action and results of the story
The trigger of the story that disrupts the equilibrium
loss, challenges, unexpected support, threat to income,
It was my first day and I was excited to wear my new shoes to school
Betty had been admitted again because her weight had dropped to 87 pounds
The context of the story, the characters,
When I started grade one, my mother walked me to school to make sure no one would make fun of me
Betty, on her 21st birthday is sitting in her bleak hospital room with her dad, thinking that this may be her last birthday
List of incidents recorded as what happened
The consequence of the plot
The outcomes, changes in direction, role
2. Discourse analysis of the stories selected
Unpacking the language of the author
The tone of the language
Emotional, descriptive, abstract, professional, advocacy. Pluchiks circle of emotions mapped directly onto the grid and provided an additional support for locating the incidents of the story according to control or agency and self regard.
The social structure and scope of the story. For example
I was considered to indicate agency whereas ‘me was considered to be passive.
‘We’ was an indicator of connection, he, she, they were active whereas him, her and them were passive.
Active and passive verbs
Study of agency, location of the agency (locus of control)
Finding the root metaphors in the text. A plant metaphor was considered an indicator of growth and therefore suggested agency, black dogs a sign of being controlled by negative influences
Developing simple scripts
When (the trigger) when I am in a crowd of people I don’t know
I (summary of the plot) I try to close in and get to the edge
Then (the consequence). I can figure out how to get away
Summary of what the student had learned about patient experience from the analysis and the how the scripts depicted the trajectory of personal experience
NOTE the following section emerged during the group discussions each year – an iterative investigation of students.
Plot stories or on a standpoint map
Identifying where the story script is located on the standpoint grid and the movement noted. Refer to Pluchiks emotion circle for support. Robert Plutchik
Finding and mapping common story scripts
These basic scripts are combined with others to create script categories and these combined or common scripts were plotted on the grid and summarized as a standpoint analysis.
2. Narrative Analysis used to uncover the social reconstruction of self after health and disabling condition.
Story Analysis Workbook Excerpts
Inquiry into scripts of Recovery and Resilience
The author of this excerpt was a student in the narrative analysis class. Any identifying information about the student has been removed
An inquiry is a structured set of questions leading to novel and personal answers. Learners own their knowledge and gain confidence in their critical thinking capacity.
Reference for Autobiography:
Roney, L. (1999). Sweet invisible body: Reflections on a life with diabetes. New York: Henry Holt and Company, LLC.
Short 200 word book report:
Lisa Roney writes of how being diagnosed with diabetes at age twelve has affected her life. She describes the constant attention diabetics must pay to diet, exercise, and the constant balance of high and low blood sugar. She voices how diabetes infiltrates all aspects of her life. Through her autobiography, Roney hopes to reach out to other diabetics, inform others about the implication of a chronic disease and also to validate her own story. Her struggle and life experiences lead her from a young girl trying to be brave, to an defiant teenager challenging authority, a college student pretending diabetes doesn’t exist, to a battered lover defined by diabetes, and then leave her having found her place as a writer. Throughout the novel, Roney knows that her experiences and choices have brought her to where she is, but as is the case throughout much of her narrative, she finds it hard to break out of the control she requires in order to risk any of herself to others. Through her uninhibited recounting of her life, Roney exposes herself, provides an intimate look into the world of a person with diabetes and provides hope for others.
2. Data collection: Chronological story chain
1. Title: Grandpa’s moral story p. 5-7
Description: Grandpa tells story of how his brother Russell lost the tips of his fingers to a young Lisa who hears the moral of perseverance and overcoming horrible events.
2. Title: Hershey Haze p. 18 - 24
Description: Vaguely aware that she is not well, but too tired to do anything about it, 12 year old Lisa waits for her mother to come home and return the doctors call which confirms that she does have diabetes.
3. Title: Able to take care of yourself. p. 26 - 31
4. Title: It’s Okay, I’m Brave p. 44 - 46
Description: Lisa’s rolling veins cause problems for a nurse who tries to take her blood, but fails and cries due to the pain she has caused Lisa, who tells her, “It’s okay. Really.”
5. Title: Out of lines p. 50 - 53
Description: Unfairly made to do lines, Lisa copies out an excerpt about strict teachers really being afraid; this earns her more lines that she uses to continue her protest.
6. Title: Role Reversal p. 62 - 64
Description: While they are hiking, Lisa’s brother, who usually looks out for her on hikes, becomes dehydrated and needs Lisa to take care of him.
7. Title: Soda of Hope p. 69 - 72
Description: Coming home from a high school trip to Mexico, Lisa is falling into insulin shock from lack of food and is saved by the sodas that were all the Mexicans hoping to cross the border had to sell before they found work.
8. Title: Just a Drunk Tourist p. 85 - 90
Description: Travelling alone in Venice, after hiking, Lisa shares drinks with Australian women and her glucose drops. Too proud to ask for help she stumbles around Venice humiliated by others reactions to her condition until she finds her hotel.
9. Title: Allies in a train of normals p. 91 - 93
Description: Lisa is embarrassed about testing her blood in a train car until the elderly man across from her turns out to be a diabetic as well.
10. Title: Mary’s Marvellous Diner: Everyone Welcome p. 97 - 104
Description: Mary’s Diner was a safe haven for college students to work, where staff and customers alike were comfortable regardless of their shortcomings and Lisa could work and not feel set apart.
11. Title: Cheater, Cheater, Ice Cream Eater p. 125 - 128
Description: While visiting her Uncle and Aunt, who constantly monitor her eating, Lisa sneaks some ice cream while her aunt is out, and is caught by her cousin whom she perceives as disgusted by her behaviour.
12. Title: Running with Indifferent Rose p. 154 - 156
Description: Lisa’s new exercise partner continually changes plans and shows no regard for the structure Lisa needs to regulate her diabetes, so she decides to exercise alone once more.
13. Title: Fear of Blindness is Blinding p. 165 – 168
Description: While proofreading for a law firm, Lisa experiences visual problems related to hyperglycemia and reflects that fearing blindness misled her into art studies rather than following her passion for writing.
14. Title: Learning by Lightning p. 174 – 177
Description: One of her favorite teaching moments, during a storm her students were restless so she abandoned her plan and just let the students write while she felt the power of language.
15. Title: Practically Perfect Panos p. 202 – 211
Description: Panos accepted her diabetes and created a want for monogamy in Lisa, but they had little in common and he disagreed on the nature of fidelity, eventually giving her an STI.
16. Title: Bill Destroys Belief p. 212 – 219
Description: Long term relationship with Bill who cheated uninhibitedly, lied and raped her leaves Lisa jaded and wondering if her diabetes made her think she had to put up with this kind of treatment.
17. Title: Trapped, Fighting and Paralyzed p. 242 – 248
Description: Lisa describes recurring nightmares where a sniper holds her hostage and she won’t escape alive, others where she rushed by a man who never hurts her but she cannot move, and ones when she yells at people in her life that she is angry with in waking life but can’t communicate with.
18. Title: Cheating Craig for Control p. 266 – 267
Description: A new roommate already found to take her place, Lisa’s planned move falls through. Craig offers to work it out together but Lisa’s name is on the lease and she refuses to leave.
19. Title: Cassie is Witnessed p. 279 – 283
Description: Lisa’s cat Cassie is diagnosed with diabetes, as she gets worse her life is worth fighting for from Lisa’s perspective. When she passes away Lisa takes comfort in the fact that she was known and thus lived fully.
20. Title: Safe and Loved with Sally p. 292 – 295
Description: After four years alone, Lisa lives with a roommate again and is worried Sally will start to hate her but Sally regards Lisa’s quirks with affection.
Choose 5 key stories from the Trajectory above and repeat the following three analyses for each story. Copy the templates for each story.
2. Sample Analysis of Plot and Structure of key stories
Able to take care of yourself
The beginning. The context (the who, when, where)
Lisa, as a teenager in hospital with diabetes is faced with learning how to inject herself before she can leave the hospital. The nurses and her family try everything
The middle: The plot (what happened in clear, concrete steps)
1. Lisa’s mom went to an American Diabetes Association support group meeting where one mother spoke of her teenage daughter who still refused to give herself injections.
2. Her mom tells her that she is not leaving the hospital until she can give herself her own shot.
3. Lisa practices on oranges but struggles with the idea of self-mutilation and of something “alien invading the body”.
4. Every nurse on the floor tries a different tactic but after days patience is wearing thin.
5. Finally a candy striper cuts the deal that Lisa can try it on her first if she does it on herself immediately after.
The ending: Lisa does the needle on the candy striper and then finds it much easier to do it on herself than on someone else.
3. Sample Discourse Analysis of language in key stories- abbreviated
Select a passage from each story that captures the emotion or movement of the story.
1. Underline individual words that jump out, and write them down here. Read your words aloud and write about the nature of the words, what they tell you about the author (who is the author here – victim, colleague, expert, etc. and how do the words generate sympathy, justify anger, etc). Look at the familiarity of the words, how they fit together, are they concrete or abstract, raw or sophisticated, strong or gentle, intimate or aloof.
Airy, braced, warm, jerks, dim, rivulet, frightened, tensed, hurting, flesh, recoiled, squeezed, scarlet, imprints, bruise, swelled, angry, puncture, relief.
The nature of the words is one of battle. She starts out bracing herself, frightened. Then there is the attack – hurting, flesh – and the retreat – recoiled. The aftermath is tolled – squeezed, scarlet, imprints, bruise, swelled, angry, puncture – and the final verdict is passed – relief. In this story Lisa is a warrior on trial. She is being put to the test in a battle of wills. Her unwillingness to break the integrity of her skin and the need to permeate that barrier so she can learn to take care of herself are in conflict. She knows she must overcome her willingness and the generals are present to witness her battle and judge her bravery. The words she uses are strong and very sensual. This highlights the emotional as well as physical struggle she is experiencing.
2. Circle pronouns as connections and indicators of agency. Count the number of each type of pronoun and comment on who each pronoun (I, we, they, she, it, etc) represents.
Me, my: 6 times – represents Lisa
I: 9 times – represents Lisa
The story shifts from me/my to I after Lisa has gotten the needle in and can now take it out.
Her, she, and herself: 8 times – represents the candy striper
Everyone: 1 time – represents her parents and a floor nurse
3. Record verbs as indicators of agency. Are these verbs active or passive? Indicate agency for verbs as indicated:
Technique – evaded – Lisa (the technique is in control) active
Lisa – braced – side of my right hand (she is mobilizing her hand) active
Lisa – planted – needle (using different mediums, first her hand and now the needle, she is acting upon the candy striper) active
Giving the needle – take – time (In the story the wording is “This seemed to take forever…”) active
Dim – going – vision (This verb is passive)
Sweat – running down – back (she has no control over her body) active
Candy striper – sucked – air (awareness of the candy striper acting is established) active
Candy striper – tensed – her arm (though this verb is active, it goes on to say in spite of herself – implying that she was not in control of her actions)
Lisa – hurting – candy striper (Lisa is now the one acting directly upon the candy striper) active
Lisa – pulled – syringe (there is a shift back to the medium of the needle) active
Lisa – recoiled – herself (Lisa withdraws herself, now that she is finished the needle her focus is once again on her own body) active
Lisa – squeezed – her left hand (Looking at the candy stripers arm after, Lisa again looks at the effects of the medium between her and the candy striper, in this case her hand) active
Lisa – withdraw – needle (still the candy striper is not mentioned – the needle is) active
Bruise – swelled – candy stripers arm (The actual wording does not mention the candy striper here, but the angry puncture wound) active
Though the author is using very active and vivid verbs here, her role in the affair is very passive. She is rarely in control of the events that are happening beyond her own body. It is her hand that grips the arm and the needle, but her role in puncturing the candy striper’s flesh is minimalized through the prominent role that the needle takes on.
4. Purpose / Motivation for telling this story at this point in the book. Look to changes in power, establishing new roles etc.
This is one of the first instances where Lisa really talks about losing control. She has just been diagnosed, but previously was vague about what was happening to her. Now that she knows that she has diabetes, suddenly she is powerless. Whether or not she wants to invade her body with a needle, is irrelevant, if she wants to live – if she wants to leave the hospital, she must overcome that barrier. This is where her battle with diabetes begins.
4. Sample Metaphor Analysis
Read the autobiography to find mention of metaphors. Often metaphors are implied and hidden.
Metaphors often point to ideas of concern, strong emotion or confusion.
Meaning that the metaphor provides for the author
“The state of the weather seems comparable to my blood sugar levels – some days it makes exercise outdoors impossible, but most of the time it’s just something to take into consideration.” (p. 149).
The weather is constantly something that affects our daily lives just as diabetes is a constant force in Lisa’s life. Sometimes there are storms, sometimes there are beautiful sunny days, but most of the time, it’s just the weather. I think this is the way Lisa would like to be, however she lets the forces of her diabetes control her much more often and fully than just something to take into consideration.
“I envisioned a silent monster always after me with an eraser; some days it didn’t make much progress, but others I would be going home with barely more than my toenails. During the evening and night, my real self would regenerate, but if I had been erased down to my toes that particular day, then I might have to go in to work the next morning still missing my head or my hands. That gave the eraser demon a jump start and the cycle might go through a horrible phase where I couldn’t restore myself and so hardly knew myself, barely felt that I existed.” (p. 168).
The context of this metaphor is her work. She feels that her job is dull and she is wasting away working there. However, I believe this could also be a metaphor for her diabetes. Some days she accepts it and has small triumphs – like passing her swimming exam when she was having a low blood sugar – but other days it wears at her and consumes her.
2. Is there an underlying root metaphor to the book, for example, does the person use weather, plants, animals, machines, places as the underlying metaphor and how does it shift during the course of the book.
Food is the underlying metaphor in this book. She starts out with Cheese pie being her big accomplishment and then she had to change to learning how to make whole wheat bread.
She then talks about being a child, when her mother told her she could catch more flies with honey than vinegar, the saying that girls are sugar and spice, and being sweet didn’t enable to her who always had to avoid sweets.
Then she works at Mary’s Diner in college where the motto’s are “Moderation is for monks” and “Too much of a good thing is wonderful”. Here Lisa became an addict of good milk and cheese, malt in her shakes and strong coffee – the food of adults. The large portions offered at the diner and the unhealthy foods are an example of the years Lisa spent pretending that her diabetes didn’t matter much.
When she was a child she was not forced to finish what was on her plate, but instead her parents taught her to enjoy good food – central to life.
Her brother ate with abandon – filling his hollow legs to their grandfather’s delight, but she had to exercise control. She compares this control needed to keep her alive to the same control anorexics desire through the control of their food. “Diabetics are given an eating disorder as part of a prescription for survival” (p. 122).
She then tells of the secretary who ate the chocolate bar guiltily and her own ice cream sneaking at her aunts. This is the temptation and weakness of cravings that people succumb to and then berate themselves for. The metaphor regards Lisa’s desires to fit in, indulge and live fully versus her need to control and the guilt and public shame she feels if she cheats.
Her roommate Shaun cooks Asian meals and once again introduces Lisa to the goodness and romantic mystery of good eating. Her flip back and forth between enjoying food, then dieting with other roommates, punishing and enjoying, seems to run parallel with the way she handles her diabetes.
The last section of her book, she titles “A Knot of Chocolate Covered Pretzels”. As a child she adored the tradition of chocolate covered pretzels which only were available at Christmas. Now she can get them any time at her grocery store. The pretzels “tie knots in [her] stomach as a symbol of how [she has] tried to lead a “normal” life, over and over desiring to be and acting like “everybody else” (p. 234). They are yet another representation of a life she cannot live but longs for.
6. Playing out scripts.
Insert scripts for the book in the text boxes.
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.
Brave Little Girl Script (purple)
2. Hershey Haze
3. Able to Take Care of Yourself
4. It’s Okay, I’m Brave
The Rebel Script (red)
5. Out of Lines
8. Just a Drunk Tourist
11. Cheater, Cheater, Ice Cream Eater
18. Cheating Craig for Control
The Outsider & Damsel in Distress Scripts (wine)
12. Running with Indifferent Rose
The Jaded & Diabetic Scripts (grey)
13. Fear of Blindness is Blinding
16. Bill Destroys Belief
17. Trapped, Fighting and Paralyzed
The Understood Script (yellow)
7. Soda of Hope
9. Allies in a Train of Normals
10. Mary’s Marvellous Diner: Everyone Welcome
15. Practically Perfect Panos
20. Safe and Loved with Sally
The Giver (green)
6. Role Reversal
7. Cassie is Witnessed
The Just Lisa Script (blue)
1. Grandpa`s Story
14. Learning by Lightning
Gold scripts – Lisa often mentions that other people with diabetes have gone on to be married and live happy lives, but she never tells a story about it. Just that she knows that it`s possible.
Using the guide attached. What is your overall interpretation of the autobiography, what you have learned about health capacity, resilience, recovery and empowerment? The following questions might guide your work. Max 5 pages.
How does the outline of health capacity relate to my autobiography? What have I learned about resilience and recovery from the scripts that were uncovered? What might be the root metaphor/script for the book and how does it inform the idea of health reclaimed?
Lisa evaluated everything she ever chose in her life based on her diabetes. Her choice to go into art was due to her fear of becoming blind. Her decisions to stay with different men, the reasons they left, the reason she is alone now – all of these she attributes to her only lover for life; the diabetes
………Lisa doesn’t seem to sense any purpose in her struggle with diabetes. Though she begins her novel with the story of her grandfather`s brother who lost his fingers and went on to live a full life, overcoming that tragedy and likely many others, she cannot seem to overcome the magnitude of her own “tragedy”. When she was younger the point of her challenges was to make her a brave little girl. She gives herself needles to please everyone and doesn’t complain so that she is not a burden on anyone. The only purpose that came of that was for Lisa to continue holding her own. They taught her how to be the independent woman she is now, whether she liked it or not.
Lisa feels that her family never fully addressed the implications of her condition. When she is older she asks her mother if it was her diabetes that broke up their family. Even later on in life she is taking on guilt that is unwarranted. Or perhaps she is so into the role of blaming everything on her diabetes that she is just trying to fit one more event under the category of things that her diabetes ruined.
Therefore I ask myself the question: What is Lisa’s health capacity? I find it hard to answer this question. If Lisa is okay with being alone, if she is happy in her independence, then I would say she is already healthy. She has her mother to call her every morning and make sure she is okay. She has friends around her. She has a career that she is passionate about and talented at. Therefore, it may be a matter of perspective. Lisa may find that having her mom call her every day is detrimental to their relationship or she could see it as the opportunity to talk to her mother each and every morning, something that could strengthen their bond. If her mother is anything like mine, she would probably relish the need to talk to her daughter at the beginning of each day.
Therefore, if Lisa’s perspective is all that is keeping her unhappy, is that the same as being unhealthy? Health is certainly related to happiness, I believe, but a person’s perspective is unique to them and it is their right to hold that point of view. Perhaps, the similarities she draws between anorexia and diabetes are not so far off and a shift in perspective is what Lisa needs to become healthy again. However, I believe she is simply in a slump on her trajectory. She writes that this is just a phase and that she will move out into the wider world once more where her body and her life can flow in and out with the rest of society.
It seems that Lisa’s health capacity is limited. However, this may just be a time in her life, a period that she needs to go through to become better equipped to handle what is next to come. If she believes this of the adversity she is facing now, then she has all the health capacity she needs. Even if Lisa does not see the challenges she is currently staring down in this light, she might end up coming out the other side with greater health capacity anyways. Something definitely needs to happen for Lisa to shift her outlook in order for her to regain her social, emotional and spiritual health, whether it is internal or external.
Reading Lisa’s autobiography taught me that there is always more to a person than meets the eye. The title of her novel, “Sweet Invisible Body”, alludes to the invisibility of her condition, but at the same time I think it hints at some of the fear and the softness at her core. Though she comes across as strong and fiercely independent, she is afraid and vulnerable. These are qualities that people rarely see of her. Just as I failed to recognize the degree to which my housemate was susceptible to his diabetes, many people close to Lisa likely fail to realize the degree to which her condition impacts her life.
I always thought that Jeansol was embarrassed by his condition and that he didn’t want to speak of it. I wonder now if that was more my projection onto him, than his attitude that I perceived. Perhaps if I hadn’t been afraid to ask him about it, fearing that he was afraid of appearing weak, I could have had a better understanding of what life for him was really like. I lived in the same house as him for nearly nine months, and I am still not sure whether or not he feels the way Lisa describes. Certainly, that day that they took him to the hospital, he admitted to us later, he thought for sure he was going to die. I do not have that experience, yet I do not see him as having one foot in another world. He came back to live with us right afterwards. Perhaps I was too wrapped up in my own world to notice. Perhaps we were all scared of our mortality. Perhaps Lisa is right and people with diabetes do cause us to fear and so we would much rather ignore what they have to deal with constantly. Or maybe JeanSol had better health capacity and resiliency. He was younger when it happened. In a couple of years, it may be that JeanSol will be fighting off his own darkness. Or conceivably, his brush with death may have given him a greater appreciation for life. A strength that Lisa does not have because though she has tread the threshold, she has not knocked upon death’s door.
Drawing comparisons is fruitless though, as each and every individual will be different. Reading this novel has taught me that health is self-defined. A doctor can say that Lisa is in perfect health as she manages her diabetes so closely and effectively. However, if Lisa does not feel healthy, then she isn’t; especially because health capacity is centralized on belief. This is not likely what health professionals would like to hear as it implies that they are powerless to help a person unless they can help them change what they believe, and that is a hard thing to do. There are certainly ways to do it and improving overall health is a solid way to start. However, in the end, the individual’s perception of their own health is what is most crucial to the definition of health.
Currently Lisa’s root script is that of the Diabetic. In this novel especially, everything she does seems to relate back to her condition. She can be as physically healthy as humanly possible and yet she is not a picture of full health because her way of living with her condition is limiting other areas of her life. Her doctors cannot help her to change her concept of diabetes. There are many ways that people could try to help her shift her point of view, but in the end, it’s up to Lisa alone to determine how she will react to events. Undeniably, some of this is also determined by previous experience and shaped by environmental factors, but general outlook is something that she can control, if she chooses.
I have learned that I have taken my health for granted. I assume that it would be easier than is probably true in actuality for people to adapt to and learn to live with a chronic condition. I have also learned that likely the reason people do not want to talk about their disability is because they do not want to be defined by it. However, if they were to know that they could talk about their disability without being labelled as that and that alone, they would likely appreciate someone who is willing to listen. Complete understanding and the ability to empathize are not as important as the willingness to just hear and witness. People want someone who can give testimony to their lives. I will never know what it is like to be diagnosed with diabetes from the age of eleven and then to live with the implications of that for the rest of my life. I do not need to experience this to be able to lend a sympathetic ear to someone who needs to talk out their challenges and come to terms with what they are struggling with.
It seems that people with chronic illness would need this more often than most. Most problems that we deal with in our daily lives have solutions and are issues that pass and can be resolved. With a chronic illness, the problem does not go away. There will be days that are better than others, but for those that are hard, it would be difficult to talk about it with someone who has to hear about it constantly. Tiring others out with our personal strife’s is not a way to endear ourselves to those we care about. Yet, if there is someone to talk to every now and then and intermittently provide that release, then the problem doesn’t seem so unbearable. Perhaps that is why Lisa’s novel takes on such an unyieldingly disheartened inflectionience. She finally has an audience.