Small stories, big dilemmas: some thoughts on method

In my last post I touched on the concept of ‘small stories’, the brief, fragmented, conversational narratives that arise naturally in our everyday interactions. Small stories are everywhere: doctor-patient encounters, business meetings, phone calls, talk in the car, and conversations between friends are just some of the interactional contexts where small stories emerge. The question that continues to pulse is how to capture these spontaneous and fleeting snippets of talk in action.

One issue with collecting small stories is the inevitable influence of the researcher’s involvement. For data to be considered ‘naturally-occurring’, Potter (1996, p.135) says that it must pass the ‘dead social scientist test’: that is, the data used should be based on an interaction that “would have taken place in the form that it did had the researcher not been born or if the researcher had got run over on the way to the university that morning”. But the ethical requirement that one must first obtain the informed consent of participants makes it hard to see how any data could be collected had the researcher “not been born”.

The famous sociolinguist William Labov used the term “observer’s paradox” to describe the difficulties of obtaining natural speech in research situations. As he puts it: “The aim of linguistic research in the community must be to find out how people talk when they are not being systematically observed; yet we can only obtain this data by systematic observation” (1972, p.209). While it is widely accepted that the observer’s paradox can never be completely overcome, researchers across the social sciences have sought to obtain data that is as close to naturally-occurring as possible (Gordon 2012). To do this, they have used research methods such as audio or video recordings and participant observation of some form or other. But for those of us who are narrative inquirers, gatherers of, and listeners to stories, these methods set off all sorts of alarm bells.

Narrative inquiry is a relational inquiry. Clandinin and Connelly (2000, p.189) tell us that “relationship is key to what it is that narrative inquirers do”. As narrative inquirers, we do research with rather than on our participants. We step out from behind the bushes and walk alongside them. We treat stories as gifts that are shared with us through the generosity of those whom we want to learn more about. It is precisely for these reasons that the thought of using recording devices or mechanically observing interactions troubles me. Like Blix (2016, p.29), I worry about becoming an “academic parasite”, intruding into people’s lives only to extract their stories away from them and scramble out post data collection.

I ask you, then, how do we approach studying small stories narratively? What kinds of methods should we use if we are to maintain a relational ethical stance in small story research? I’m drawn to Ron Pelias’ (2011) description of leaning in during everyday life encounters as a way to think about the study of small stories. Is it possible to “lean in” as Pelias suggests, to engage in the everyday life worlds of our participants without creating a sense of surveillance and eavesdropping?

One might say that I am caught in what Derrida (1993, p.12) calls aporias, moments of “not knowing where to go”. But as Caine (2010) reminds us, narrative inquiry is a fluid form of investigation; it is like travelling to and within unfamiliar landscapes without a map. What compels me to think carefully and critically about my choice of methods is that the participants I will be working alongside are in a vulnerable space. I will be entering the lives of families at a time of great disruption when serious illness calls forth important and sometimes difficult stories. This kind of research demands methods that build the highest level of sensitivity into their core.

References

Blix, BH 2016, ‘The Importance of Untold and Unheard Stories in Narrative Gerontology: Reflections on a Field Still in the Making from a Narrative Gerontologist in the Making’, Narrative Works: Issues, Investigations & Interventions, vol.6, no.2, pp.28-49.

Caine, V 2010, ‘Narrative Beginnings: Traveling To and Within Unfamiliar Landscapes’, Qualitative Health Research, vol.20, no.9, pp.1304-1311.

Clandinin, DJ & Connelly, FM 2000, Narrative inquiry: Experience and story in qualitative research, Jossey-Bass, San Francisco.

Derrida, J 1993, Aporias: Dying – Awaiting (one Another at) the “Limits of Truth”, Stanford University Press, Stanford.

Gordon, C 2012, ‘Beyond the observer’s paradox: the audio-recorder as a resource for the display of identity’, Qualitative Research, vol.13, no.3, pp.299-317.

Labov, W 1972, Sociolinguistic patterns, University of Pennsylvania Press, Philadelphia.

Pelias, R 2011, Leaning: A poetics of personal relations, Left Coast Press, Walnut Creek, California.

Potter, J 1996, ‘Discourse analysis and constructionist approaches: Theoretical background’, in J Richardson (ed.), Handbook of qualitative research methods for psychology and the social sciences, BPS Books, Leicester, pp.125-40.

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Big vs. small stories: A foot in two camps

While World Cup fans have been obsessing over the age-old Messi-Ronaldo debate, I’ve been immersed in another ongoing debate, one that swelled up in 2006 between three scholars: applied linguist Alexandra Georgakopoulou, narrative psychologist Mark Freeman, and narrative psychologist Michael Bamberg. The debate concerns the pros and cons of, on the one hand, reflective narratives told in interview settings (‘big’ stories) and on the other, stories told in the immediate interactions of everyday life (‘small’ stories).

Bamberg and Georgakopoulou both think that there is something troubling about big story research. Their main concern is that when we confine people to a room with a stranger for a few hours and ask them to tell us their story, we are stepping outside the normal, everyday contexts within which stories are told, and within which they surface. Big stories, then, are said to be somewhat artificial and removed from day-to-day reality; they are renditions of “life ‘on holiday'” (Freeman 2006).

Rather than privileging big stories, as has mostly been the case in narrative research, Bamberg and Georgakopoulou want us to turn our attention to small ones. Small stories are the kinds of stories we tell each other in passing as we go about our everyday lives; stories that “seem to pop up, not necessarily even recognised as stories, and [are] quickly forgotten” (Bamberg 2006). These stories have some kind of immediacy in that they are concerned with the ‘now’, the recent past, or the projected near future. Bamberg believes that small stories are the “‘real’ stories of our lived lives”.

Freeman, however, has hit back in defence of big stories. His argument centres around the idea that reflection is an aspect of life itself and is helpful in research terms. Freeman takes up the position that there is “plenty of meaning to go around”; in other words, there is room enough in the world of narratives for all stories, big and small. But Bamberg remains defiant, describing himself as “skeptical” about whether “small stories and big stories can manage to co-exist peacefully and complement one another”.

What is at issue for me in this debate is which type of story is most useful for studying illness experiences in the context of family life. It seems that there is much to gain from a small story approach that takes narrative “down to size” (Freeman 2006) where we can see what, in their daily lives, people are doing when they tell stories about illness and, therefore, what these stories actually do when they are told. But I am also wary of the practical challenges of trying to ‘catch’ these stories, which Hymes (1996) calls “fleeting moments of narrative orientation to the world”.

In my view, a danger lurking in the small story approach is forgetting about or pushing aside our sensitivity to the relational spaces that bring people together in research relationships. I say this because, for me, the main impulse for turning to narrative research in the first place is its relational orientation; it is a commitment to a form of togetherness in research where meaning-making is collaborative and where the lives of researchers and participants are intertwined (Clandinin 2013). Clandinin and Connelly (2000) help us see narrative inquiry as more than a methodology; it is a way of being in relation. As narrative researchers we attend to difficult stories and experiences, we carry them with us; we dwell alongside participants and hold close their vulnerabilities in our retellings. It is here, in these spaces of coming together where I see the very strength of narrative inquiry.

Ultimately, what seems to underlie the big story/small story debate is a desire to tame narratives, to systematise and pin them down into neatly defined categories. But prising narratives apart and seeing them in binary terms is futile when, in fact, narratives have both small and big story attributes. And here lies the challenge: if we can’t enclose narratives in boxes, fence them, label them, or separate them by their size, how might we, as narrative researchers, begin to embrace working in the borderlands with the nebulous, slippery, bendable, unwieldy nature of our inquiries?

References

Bamberg, M 2006, ‘Stories: Big or small – why do we care?’, Narrative Inquiry, vol.16, no.1, pp.139-147.

Clandinin, DJ 2013, Engaging in narrative inquiry, Left Coast Press, Walnut Creek, California.

Clandinin, DJ & Connelly, FM 2000, Narrative inquiry: Experience and story in qualitative research, Jossey-Bass, San Francisco.

Freeman, M 2006, ‘Life “on holiday”? In defense of big stories’, Narrative Inquiry, vol.16. no.1, pp.131-138.

Georgakopoulou, A 2006, ‘Thinking big with small stories in narrative and identity analysis’, Narrative Inquiry, vol.16, no.1, pp.122-130.

Hymes, D 1996, Ethnography, linguistics, narrative inequality. Toward an understanding of voice, Taylor and Francis, London.

Blogging through cancer

Well, I’ve finally found a reason to write my own blog. I’m 38 years old, have two young kids and breast cancer.

— Laurie Kingston, not just about cancer, 12 January 2006

For health narrative researchers, cancer blogs hold a mine of 24-carat data. They offer a unique level of access to the intimate experiences of life with cancer and provide vivid insights into the diverse predicaments associated with the illness. This includes things such as the emotional impact of receiving a cancer diagnosis; the trajectory of treatments with adverse side-effects; the process of dealing with doctors and healthcare systems; the experience of having cancer in the context of family, work and social lives; and the everyday, mundane troubles that are experienced in the shadow of serious illness.

In research literature, cancer blogging is characterised as a form of affective labour that carries a therapeutic and emancipatory potential (McCosker & Darcy 2013). We are told of the “wounded blogger” – a play on the title of the classic The Wounded Storyteller by Arthur Frank (1995) – who writes about and through cancer as a way of making sense of their altered self, life and body (Coll-Planas & Visa 2016). Blogs are also thought to be a kind of subaltern tool for cancer patients to challenge medical authority and recover a sense of agency and control over their health outside of medical discourses and practices (McCosker & Darcy 2013). To quote Michel de Certeau, whose book The Practice of Everyday Life (1984) I’ve been reading, cancer blogging might be seen as a “tactic of the weak”.

There are also practical reasons why cancer patients take to blogging. One common reason cancer patients use blogs is to keep family and friends updated on their care and health status (Keim-Malpass & Steeves 2012). As somebody interested in family health communication, I am curious to know how family members respond to the blog posts written by their ill loved one, and what place the issues and topics made public in these posts have in their everyday cancer conversations. It seems that we have little understanding of the interplay and relation between online self-narration and actual, offline talk about cancer.

One thing we do know is that cancer blogging opens new and promising possibilities for improving healthcare services. A key benefit of cancer blogs is their capacity to provide information not otherwise available to oncologists and other clinicians about patient and family experiences outside of medical encounters (Gualtieri & Akhtar 2013). Cancer blogs also provide unsolicited narratives that are driven by the concerns of patients and their families rather than concerns of researchers or healthcare providers (O’Brien & Clark 2012). Cancer bloggers write about what is important to them in their own illness journeys. The challenge for healthcare providers is to find ways of using this sort of knowledge that is experiential, unbidden, and not produced under institutional conditions.

Given that cancer blogs circulate in public, they also play an important role in shaping what we know and think about cancer. Judy Segal (2012) has looked into how publicly-told cancer narratives are used to answer the question, “How shall I be ill?” She found that the stories that circulate most frequently and readily in public – the “triumphal” stories about staying positive and about cancer being a gift – are not helpful to many cancer patients and their families. This includes herself, as she powerfully explains in her newspaper editorial Cancer isn’t the best thing that ever happened to me. She writes:

…while some of us wish to find meaning in illness, some of us would prefer to turn away from the demand of coherence itself, and see cancer as meaningless-some terrible bad luck, adding up to nothing. Then, the question is not whether we can make room, in clinical settings and in domestic ones, for a sad or a hopeless story, but whether we can make room for no story at all (Segal 2012).

This paragraph stands out to me because it goes against the very foundational premise on which narrative research is based, that is: humans are fundamentally storytelling, meaning-making beings. Stephanie Trigg (2007), an academic and cancer blogger, reaffirms this notion: “So prevalent is the expectation that people who get sick turn into writers.”

What I take from this is that we need to be attentive to the diversity of meanings given to the experience of cancer. We must also acknowledge that there is a wide range of resources – both narrative and non-narrative in form – through which those experiencing cancer may express and explore their experiences, negotiate their identities and manage their daily lives. This can include, but is in no way limited to, the act of blogging.

References

Coll-Planas, G & Visa, M 2016, ‘The wounded blogger: Analysis of narratives by women with breast cancer’, Sociology of Health and Illness, vol.38, no.6, pp.884-898.

de Certeau, M 1984, The Practice of Everyday Life, trans. S Rendall, University of California Press, Berkeley.

Gualtieri, L & Akhtar, FY 2013, ‘Cancer patient blogs: how patients, clinicians, and researchers learn from rich narratives of illness’, Proceedings of the ITI 2013 35th International Conference on Information Technology Interfaces, Cavtat, Croatia, 24-27 June.

Keim-Malpass, J & Steeves, RH 2012, ‘Talking with death at a diner: Young women’s online narratives of cancer’, Oncology Nursing Forum, vol.39, no.4, pp.373-378.

McCosker, A & Darcy, R 2013, ‘Living with cancer: Affective labour, self-expression and the utility of blogs’, Information, Communication and Society, vol.16, no.8, pp.1266-1285.

O’Brien, MR & Clark, D 2012, ‘Unsolicited written narratives as a methodological genre in terminal illness: Challenges and limitations’, Qualitative Health Research, vol.22, no.2, pp.274-284.

Segal, J 2012, ‘Cancer Experience and Its Narration: An Accidental Study’, Literature and Medicine, vol.30, no.2, pp.292-318.

Trigg, S 2007, ‘I’ve written my talk: blogging, writing and temporality’, Luminous Gerberas, HEAT 15, pp.115-126.

Stories from the other side of healthcare

The scream that goes through the house is the heartbeat that makes audible, at last, who we are, how resonant we are, how connected we are.

— Arnold Weinstein (2003)

Over the past few weeks I’ve been closely following The Haunted One on Twitter. This account has been set up for healthcare professionals to share difficult stories, specifically the traumatic, painful, and hard stuff they witness every day at work and that stays with them long after their shift is done. It interests me how these fragile stories are piling up and circulating through a space in which they do not comfortably reside. There have been several concerns raised about patient privacy and confidentiality, with some users questioning whether it’s appropriate to bring these stories into the public domain.

In her book Other People’s Stories (2005), Amy Shuman writes that stories need to travel beyond their owners to accomplish cultural work. We can see this in Patient Opinion, which focuses on making patients’ stories of healthcare experiences travel for improving services. The Haunted One does cultural work by providing a safe place for healthcare professionals to expose their vulnerable selves, something which is not typically encouraged in the culture of medicine.

Shuman also talks about the fault lines that crack open when stories travel. By fault lines, she means the sorts of ethical quagmires that stories can fall into on their paths. For example, Patient Opinion has been criticised for its slicing and dicing approach to moderating the stories that pass through its feedback system. The privacy and confidentiality issues that The Haunted One has been wrestling with are essentially a question of who has the right to tell which stories under what circumstances, issues of what Shuman calls entitlement to acts of narration. Claiming entitlement to the stories posted on The Haunted One is complicated because they are each, as Cathy Caruth (1996) puts it, “the story of the way in which one’s own trauma is tied up with the trauma of another”. This places storytellers in a catch-22 position: telling hard stories might make a better world, but they are never just our own to tell.

The Haunted One is a powerful reminder that patients, families, and healthcare professionals are not separate storytelling entities, even though much research treats them this way. The storytelling that takes place in healthcare is a product of the intersections of lives and the entanglement of experiences that brings patients, families, and healthcare professionals together in a storied web. This is why it’s important to be mindful of our responsibilities when telling stories about health, illness, and care that are inevitably entwined with the lives of others.

What I also find appealing about The Haunted One is that it challenges the way we see healthcare professionals. As Paul Atkinson (1997) has said of illness narratives, patients are typically represented as the victims, and medical staff as the villains. In many of the academic papers I’ve read, patients’ storylines are analysed to reveal the absence of compassion, sensitivity, and respect in clinical environments. Often, healthcare professionals are viewed as uncaring and disengaged and are found to ignore and dismiss patients’ suffering and keep families at arm’s length. However, The Haunted One presents a completely different picture. It unveils the basic humanity of healthcare professionals as people who care about the patients they care for, whose hearts bleed and eyes weep for them, and who carry their wounds and losses with them.

The Haunted One is a small but significant step towards humanising healthcare because it facilitates, in the words of literary scholar Arnold Weinstein (2003), “a world that is linked and meshed, a world in which pain and feeling bind us rather than divide us, an ecosystem that flaunts the primacy of emotion itself as a human bridge.” And, as a growing researcher trying to learn my way around this vast field, it has shown me the importance of understanding what it means to experience healthcare from both inside and outside the clinic doors.

References

Atkinson, P 1997, ‘Narrative Turn or Blind Alley?’, Qualitative Health Research, vol.7, no.3, pp.325-44.

Caruth, C 1996, Unclaimed Experience: Trauma, Narrative, and History, Johns Hopkins University Press, Baltimore.

Shuman, A 2005, Other People’s Stories: Entitlement Claims and the Critique of Empathy, University of Illinois Press, Urbana.

Weinstein, A 2003, A Scream Goes Through the House: What Literature Teaches Us About Life, Random House, New York.

Can stories survive in healthcare?

“Be heard” says the tagline on Patient Opinion, an independent, not-for-profit feedback platform that gathers patient stories to improve healthcare services. In two words, this tagline sums up one of the most common and enduring criticisms of healthcare: patients are not being listened to.

Patient Opinion is doing something about this. They ask healthcare services to respond to patients’ stories, take action where necessary, and report back on what changes were made as a result. But before any of this can happen, every story requires some degree of tinkering.

Let me tell you about ‘Dave’. Dave is a pseudonym for a participant in this study. He shared a story on Patient Opinion UK about the care his father received at ‘Smalltown Hospital’ (another pseudonym). Dave wrote that nurses were unaware his father had two strokes.

Before it was published, Dave’s story was carefully edited by Patient Opinion’s moderation team. His first sentence, “This hospital has been awful for a very long time.”, was deleted. A passage written in capitals was changed to lowercase, an exclamation mark was taken out, and scare quotes around the word ‘specialist’ were removed. Phrases like “I felt that”, “I found this”, and “I do not believe” were added to make it clear that this was Dave’s opinion.

The process of moderation is all about risk management. From a legal perspective, this work is necessary to ensure that Patient Opinion is not liable for defamation. From an ethical point of view, however, moderation raises concerns around authenticity, representation, and power, and leaves us wondering what it means to “be heard” in healthcare. (In an email to Patient Opinion, Dave said his story “was diluted” to produce an “ambigious” version that “lacks any impact”. He asked for it to be taken down.)

There’s more to this matter than just moderation, though. Postings on Patient Opinion are used internally by healthcare organisations in a variety of managerial routines. In the Director of Nursing’s office at Smalltown Hospital, postings are summarised into a single line in an Excel spreadsheet. From there they are turned into data from which graphs and tables are made to compare departments and measure staff performance.

What strikes me here is how hard it is to resist institutional pressures to simplify and quantify. Healthcare organisations are searching for ways to become more story conscious, but it’s precisely this narrative work that is usually incompatible with standard accountability procedures. Stories like Dave’s are chopped up and excavated for formalised knowledge about a given practice, and then reassembled into a format that can be processed as efficiently as possible. And so we end up at the same point as before, where the voices of patients and their families are lost in a pool of numbers.

Of course, this is not to say that all healthcare organisations operate this way, or that feedback platforms like Patient Opinion are unable to initiate change, because they do (read this, and this). Rather, I am asking us to consider what place stories have in the notoriously data-driven healthcare industry. When it comes to using patient feedback for quality improvement, how can we redesign the dynamics of dominant quantitative accountability procedures to make room for embodied experiences of care – be it stories or art or poetry or photography – which are not accountable in that way?

Reference

Ziewitz, M 2017, ‘Experience in action: Moderating care in web-based patient feedback’, Social Science & Medicine, vol.175, pp.99-108.

A post to remember

It’s March. The summer holidays have come and gone. I’m back at my desk, scrolling through a thirty page journal article that has words in it like ‘phenomenological’ and ‘hermeneutic’, thinking it’s no wonder nobody ever reads this stuff.

But here I am, starting a research project that will one day become a thesis that nobody will ever read, because for one reason or another, I’m not yet ready to say goodbye to university life (just ask my dad who thinks PhD stands for ‘Permanently home Daughter’).

Right now I’m testing the waters, seeing what other people have done and, perhaps more importantly, what they haven’t done. In the process, I’m trying to find inspiration for a research idea that’s achievable, that does something useful, and above all, that lights a spark of curiosity inside me.

Earlier this week I sat in on a presentation given by a PhD student from my faculty. The presentation followed a format that researchers everywhere are trained to repeat: these are my questions, this is what I’ve done, and here’s what I’ve found. And while this made for a very interesting presentation, what I really wanted to know is what drew the student to their project in the first place. I wanted to ask: Why do you care about this project, and what makes this enough of a reason for you to be standing here today having done all this work and not something else?

Because being a researcher isn’t easy. And even if you’ve designed the most exciting or fulfilling or personally meaningful project, it doesn’t take long before you become caught up in the rigmarole of ethics procedures, and the messiness of doing fieldwork, and then the difficult, draining work of writing. As everything piles up, the passion weakens and that spark fades, and you end up just wanting the whole thing to be over with.

But I’m not going to let this happen. I’m writing this post to serve as a reminder to me, for whenever the going gets tough, not to forget why I’m doing this, what I’m here to learn more about, and the reasons why I care.