Sharing stories: Experiences of sharing personal stories and creating a collective story about living with advanced cancer

Abstract

Narratives play a crucial role in shaping individual and collective identities, also in the context of illness. This study explored the experiences of individuals with advanced cancer who participated in a narrative course at a Danish research clinic in 2022. This course included a collective storytelling exercise where participants shared personal illness narratives that eventually were integrated into a collective story document. Drawing on ethnographic fieldwork including participant observations, individual interviews, focus groups, and the collective story documents, this study explores two key research questions: What do collective stories reveal about participants’ experiences of living with advanced cancer? How do participants experience the process and significance of creating collective stories, both within the course setting and beyond? The findings reveal that the collective stories predominantly centered on themes of suffering and loss, including physical, emotional, and social challenges. Sharing and listening to these stories in common fostered a sense of community among participants, alleviating feelings of loneliness and validating their experiences. However, attempts to share the collective stories outside the course setting often proved challenging, highlighting the unique role of the course as a supportive “local moral world.”

The study underscores the potential of collective storytelling in rehabilitation and palliative care, while emphasizing the influence of broader cultural and social narratives on illness experiences.

Keywords

cancer and palliative care illness narratives chronic illness disability ethnography death bereavement

Introduction

Narratives operate on multiple levels in everyday life and society, ranging from the intimate stories we share with loved ones, to organizational narratives that shape institutional practices, and even to the grand narratives that define cultural and national identities (Blix, 2017). Narratives are not merely stories communicated to others (Gubrium and Holstein, 2009); they emerge from social interactions that influence both the content and trajectory of the stories themselves. These narratives are always embedded in specific social and local contexts, interconnected with dominant macro-narratives (de Fina, 2008). As such, narratives must be understood as a social practice, requiring attention to socially shared resources and analysis within broader social and cultural contexts (Atkinson, 2009; Frank, 2013; Gubrium and Holstein, 2009).

Severe illness is a call for narratives (Frank, 2013), and illness narratives have been a significant focus in social and healthcare research (Bury, 2001; Charon et al., 2016; Hydén, 1997). Through narration, individuals living with illness can (re)construct their life histories, “recreate a temporal context that had been lost” (Hydén, 1997: 53), and articulate their experiences of suffering (Frank, 2013; Hydén, 1997; Kleinman, 1998). Narration may also provide a sense of healing by helping individuals maintain or restore meaning and consistency in their lives, which may have been disrupted by illness (Bury, 1982, 2001; Hydén, 1997). While illness narratives often focus on individual experiences, the act of narrating illness is inherently social (Hydén, 1997). Stories shared in clinical settings are, like all stories, shaped by the context, influencing both their form and purpose (Hydén, 1997).

Over the past decade, there has been growing interest in patients’ personal illness experiences in both research and clinical interventions (Roikjaer et al., 2022). Narrative-based interventions in cancer patient care utilize storytelling and personal narratives as therapeutic tools to encourage self-expression and foster understanding. These approaches prioritize meaning-making rather than focusing solely on coping outcomes (Ramya and Sheelam, 2024). However, dominant cultural narratives and moral imperatives surrounding cancer rehabilitation and survivorship significantly shape how patients experience and recount their illness (Broom et al., 2019; Hansen and Tjørnhøj-Thomsen, 2008; Segal, 2012). Research has shown that individuals with cancer often adapt cultural and biomedical discourses when narrating their illness. For example, Sidenius et al. demonstrated how women with endometrial cancer internalized healthcare professionals’ optimistic framing of their prognosis, leading them to describe their illness in terms of “feeling lucky” (Sidenius et al., 2019b) or referring to their cancer as “good” (Sidenius et al., 2019a). Similar findings emerged in a study on the illness narratives of individuals with operable lung cancer (Schoenau, 2022). Additionally, scholars have highlighted how organizational narrative within the field of rehabilitation may privilege certain stories over others, underscoring the importance of considering the institutional and structural contexts of storytelling (Graff et al., 2023). Thus, illness narratives extend beyond individual expressions of experience and can serve to collectivize personal illness experiences (Hydén, 1997; Jess et al., 2023; Lindenmeyer et al., 2011; Turner, 2017). Moreover, storytelling in Scandinavian rehabilitation and palliative care interventions is perceived as meaningful by participants and their families. Roikjær et al. scoped 42 studies, 17 of those reporting an outcome, and a few of those in the sense of an acceptance, belonging and connectedness related to sharing stories (Roikjaer et al., 2022). Still, while the significance of storytelling, belonging and identifying in cancer peer support groups have been documented (Midtgaard et al., 2006; Yaskowich and Stam, 2003), we found no studies about creating and sharing a collective story document.

In 2022, a Danish research clinic at the Danish Knowledge Centre for Rehabilitation and Palliative Care (REHPA) introduced a narrative course for individuals with advanced cancer as part of a combined rehabilitation and palliative care program for people living with advanced cancer. With a focus on storytelling, the overall aim of the course was to support participants’ quality of life by creating meaning, foster hope and restore a sense of coherence in life. One exercise aimed to compose a collective story based on the participants’ individual narratives. This study explores the experiences of participants who engaged in the collective story exercise. The study seeks to answer the following research questions: What do collective stories reveal about the participants’ experiences of living with advanced cancer? How do participants experience the process and significance of creating and sharing collective stories, both within the course setting and beyond?

Although the distinction between the concepts of “narrative” and “story” remains a topic of debate within the field of narrative research, and the two terms are often used interchangeably (Mattingly and Garro, 2000), we use the term “stories” to specifically refer to the collective narrative exercise of constructing shared accounts about life with advanced cancer. Beyond this context, we do not differentiate between the two terms.

The study context and the collective story exercise

This study is grounded in ethnographic fieldwork conducted in the context of a narrative course held on three separate occasions with three different groups in a Danish research clinic in 2022. The objective of the clinic is to develop, test and evaluate different methods within rehabilitative (sometimes combined with palliative care) courses for people with life-threatening illnesses. Patients are recruited from all over the country. The narrative course was defined as an innovative research-anchored program to be tested in the clinic three times in 2022. The form and content of working with a collective story document was tried out before at courses for elderly people suffering from HIV (Jess et al., 2023; Jess and Timm, 2019) and the idea of combining rehabilitation and palliative care in a course for people suffering from advanced cancer (Raunkiær, 2024; Raunkiær and Gärtner, 2020).

Eligibility criteria in the clinic required participants to be over 18 years old, diagnosed with cancer, fluent in Danish, self-reliant, and willing to participate in both the narrative course and the study. The participants at this course were not limited to a specific diagnosis of cancer. Participants were recruited through the clinic’s normal channels such as flyers at hospital wards, homepages etc. The participants were referred to the clinic by a doctor and underwent individual assessment by the clinic staff. The majority of participants were female (n = 30), with ages ranging from 39 to 87 years. A total of 36 individuals participated, with 28 completing. Reasons for not completing the course varied. One participant died, two did not complete due to illness, three did not provide a reason for not completing, and two participants reported harmful experiences at the initial stay (Gärtner et al., 2025).

The course consisted of an initial 4-day residential stay, followed by a 2-day follow-up stay approximately 5–6 weeks later. The research clinic is situated in a hospital, close to historic architecture and nature, and is designed to be calming and inspiring. All participants had private rooms and all meals were provided. The course’s primary aim was to support participants in constructing and reconstructing meaning and a sense of coherence in life while living with advanced cancer (Gärtner et al., 2025, 2026). The course was modeled after the general courses offered at the REHPA research clinic, which typically include a 5-day residential stay, a 12-week home-based period with assignments, and a concluding 2-day residential stay (Rasmussen et al., 2020).

The course was developed by professionals at the REHPA research clinic, including a psychologist, nurses, and physiotherapists. In April 2021, the external course designers conducted training for clinic professionals on how to facilitate the course. Two of the authors, HSG and HT, attended this training session to gain a deeper understanding of the course content.

While the overall focus of the clinic is rehabilitation and palliative care approaches, this narrative course was furthermore grounded in the understanding that individuals continuously shape and reshape their identities through storytelling and attentive listening, and that narratives are influenced by social processes (Frank, 2013; Jess et al., 2023; White, 2006). The theoretical framework for the course drew inspiration from dignity therapy (Chochinov et al., 2005) and narrative therapy (White, 2006). While dignity therapy involves creating a document summarizing a patient’s life story, narrative therapy is based on the idea that actively engaging with storytelling can help individuals identify alternative narratives about their lives, potentially altering their perceptions of the future. Both approaches inspired the collective story exercise (Gärtner et al., 2025, 2026) but still with an overall focus on a sense of quality of life more than therapeutic outcomes.

The collective story exercise was the first of six narrative activities introduced to participants during the course (Gärtner et al., 2025, 2026). This exercise aimed to help participants identify both individual and shared experiences of living with advanced cancer. While this specific exercise focused explicitly on participants’ illness and illness trajectories, the other narrative activities explored different aspects of their lives, such as personal resources, social roles, and social networks (Gärtner et al., 2025, 2026).

At the start of the exercise, participants were invited to reflect on and write down their thoughts in response to five prompts:

How do you experience your body’s reaction to treatment?

How has living with a chronic and incurable illness affected you mentally?

How would you describe your encounters with the healthcare system?

How has living with a life-threatening illness affected your relationships with the social world (e.g. working life, social network, sports, community engagement through clubs and associations)?

How does your chronic illness affect themes in your life, such as thoughts about isolation, loss of meaning, constant choices, and mortality?

Participants then shared their reflections in small groups of two to three participants, identifying commonalities and shared experiences. In the next step, all groups and the course facilitators came together in a plenary session to share their reflections. This session was audio-recorded, and the course facilitators guided the discussion to ensure that all groups addressed each question, and the differing perspectives were acknowledged.

After the plenary session, the audio recordings were transcribed and by a student worker and edited by the course facilitators. The research team was not involved in this process. The editing resulted in a five-six-page document that synthetized the collective storytelling process into a collective story, primarily using the pronouns “we” and “us.”

On the final day of the initial residential stay (or during the follow-up days in one case due to the COVID-19 pandemic), participants reconvened in a plenary session where the collective story was read aloud by one of the course facilitators. The readers positioned themselves close to the participants and read slowly and deliberately. Participants were then invited to share their immediate reflections. Finally, each participant received a printed copy of the collective story to take home. The course facilitators emphasized that this document was personal and could be used as the participants wished, but they highlighted the option of sharing it with friends and family.

Methods

Study design

The study was conducted as an ethnographic field study, drawing on the expanding body of ethnographic research that incorporates narrative theories and concepts (Riessman, 2008: 67). The first author (HSG) conducted 185 hours of participant observation with all enrolled participants, as well as individual interviews with nine participants (three from each separate course) during the 5–6-week interval between the initial stay and the follow-up stay. Additionally, the first author conducted six focus group interviews – two on the final day of each course. All 28 participants who completed the course participated in a focus group interview, with each group consisting of three to six participants and lasting approximately 90 minutes. Furthermore, the three collective stories constructed during the courses were included as data material. These stories ranged in length from 2320 to 2541 words.

Analysis

The study design, which included participant observation, individual interviews, focus groups, and story documents, yielded a rich and comprehensive data material. While having a large data material in qualitative studies can sometimes compromise the depth of analysis, it also offers the advantage of examining a phenomenon from multiple perspectives. In this study, we did not employ data triangulation to enhance the validity of the results. Rather, the diverse data sources allowed us to explore both the content of the collective stories and the participants’ experiences with the process and significance of creating them.

Guided by our first research question, the first step of the analysis involved a thematic narrative analysis of the collective story documents (Riessman, 2008). Our objective was to examine the content of the stories by identifying and analyzing narratives within the text, ultimately pinpointing the key stories within the documents. This process required reading each document multiple times to gain familiarity with the stories. We focused on similarities and differences across the documents and identified metaphors and story plots. Based on this analysis, we identified the key story of “suffering and loss.” We also focused on how this key story was embedded within, and influenced by, broader social and cultural narratives surrounding cancer and rehabilitation.

The next step of the analysis was guided by our second research question, which explored how participants experienced the process and significance of creating the collective stories both within the course setting and beyond. This stage concentrated on analyzing transcripts from individual interviews and focus groups. As Mattingly (2010) suggests, the meaning of a story is shaped not only by its content but also by its context and the storyteller. Therefore, it is essential to consider both the story itself and the situational and conditional practices of storytelling, including its embeddedness in practice (Peterson and Langellier, 2007). In this regard, the first author’s field notes played a crucial role in this phase of the analysis.

Our approach was abductive and iterative (Timmermans and Tavory, 2022), allowing us to identify patterns and unexpected findings across the data. These insights were interpreted in relation to the previously identified key story of “suffering and loss.” In line with Riessman (2008: 73), prior theory served as a resource for interpretation of the spoken and written narratives. We drew on theoretical perspectives on illness narratives and their connection to social and cultural contexts informed our analysis. Specifically, our exploration of the “socially situated practice of storytelling” (Gubrium and Holstein, 2009: 9) and shared experiences drew inspiration from Steffen’s (1997) work on illness narratives. Furthermore, Kleinman and Kleinman’s (1991) insights into understanding human experiences of suffering as an intersubjective medium, along with their concept of “local moral world,” significantly shaped our analysis. This process involved multiple rounds of coding, categorizing emerging themes, re-examining the data, and engaging with theoretical perspectives. These steps were accompanied by ongoing discussions among the authors.

Ethics

All participants received both oral and written information before providing written consent to participate in this study. The study adheres to the principles of the Helsinki Declaration (World Medical Association, 2013). The Committee on Health Research Ethics in the Region of Southern Denmark determined that this study did not require ethical approval. Additionally, the study was approved by The University of Southern Denmark and is registered under notification number 11.471.

In a study involving individuals living with life-threatening illnesses, ethical considerations extend beyond procedural requirements. Research involving personal stories, such as illness narratives, demands careful attention to safeguarding participants’ anonymity. We have taken great care to exclude names, locations, and any other identifying information that could compromise participants’ anonymity. Some participants chose not to complete the narrative course, reporting that they found the experience to be harmful. They reported that certain stories were supported and encouraged, while others were suppressed, reflecting a complex interplay between the participants, the course facilitators, and the course structure. This issue has been addressed in detail elsewhere (Gärtner et al., 2025). However, even participants who completed the courses may have had negative experiences. In fact, some participants approached the first author to share feedback they wished to convey to the course facilitators. In such cases, she communicated their concerns as requested. Although the first author clearly stated that she was not part of the group of professionals leading the courses and was participating solely as a researcher, some participants may have hesitated to share information with her, believing her primary loyalty was to the clinic.

Findings

Our analysis identified four themes that address both the content of the collective stories (Research question 1) and the participants’ experiences of the process and significance of creating these stories (Research question 2).

Collective stories about suffering and loss

Prompted by the five guiding questions, the collective stories predominantly focused on suffering. They revolved around various forms of loss: loss of bodily functions, identity, relationships, trust, participation in everyday activities, happiness, and even the ability to dream about the future.

We experience different losses. We experience sorrow over the loss of our ability to work, our children, loss of. . . It is just one sorrow after the other. Loss.

(Excerpt from the collective story, Course II).

There is also great sorrow connected to different losses. Partially, loss of identity and control over your life, to do things and accomplish many goals in life. The loss of opportunity to have experiences in the future like growing old or having grandchildren – things we might not get to experience. And then the sorrow it is to lose, lose an active lifestyle.

(Excerpt from the collective story, Course I).

Suffering in the form of pain, fatigue, anxiety, and loneliness also emerged as dominant themes:

When we think about how it has affected us psychologically to have a chronic, incurable illness, there is now a seriousness in life. There is a lost faith in life. It feels like getting slapped and ‘well, I can also fall ill’.

Then, the loneliness sets in, too. When you sit alone and maybe find yourself surrounded by peace, then your thoughts are allowed to run free. Even though we are many people at home, we may feel incredibly lonely. They are there, but they don’t know how it feels to be us.

And then there is the anxiety. For some of us, it is about dying and leaving our children too soon. For others among us, the anxiety is about how you can’t trust your body.

(Excerpt from the collective story, Course II).

Although the collective stories predominantly centered on themes of suffering and loss, participants reported that sharing experiences and listening to the experiences of others was meaningful. A key element of this significance was rooted in the specific context of the course, which was grounded in a group of “fellow sufferers” (Steffen, 1997, p. 105). The process of telling and listening to each other’s stories fostered a strong sense of community among participants. The course setting legitimized and valued their stories of loss and suffering, providing a supportive space for expression. One participant explained how the reciprocity of storytelling mediated the emotional weight of the narratives:

Even though it is tough, it’s the recognizability in it. To meet and hear others who had the same experiences. It’s also a gift to receive, I think. (Excerpt from Focus Group 4, Course II).

Participants reported that the collective stories wove their individual experiences with advanced cancer into a shared story fostering mutual acknowledgment. These shared stories of struggles seemed to strengthen their sense of community and, for some, helped to alleviate feelings of loneliness:

Again, it’s the recognizability in it, that you are not alone, because you recognize yourself in the collective story (. . .) I had such a lonesome feeling – that I was alone in this, and it disappeared a little. (Excerpt from Focus Group 4, Course II).

Recognizing their experiences within a group of fellow sufferers (Steffen, 1997) helped validate the participants’ individual illness experiences, transforming personal suffering into shared stories of hardship. These findings echo Steffen’s (1997) anthropological work on Alcoholics Anonymous, which emphasizes the transformative power of storytelling in turning individual illness stories into shared experiences.

The process of transforming individual illness narratives into collective stories emphasized the transition from the individual “I” to the collective “we.” As Frank (2009) explains, all stories create a distinction between the “I” that narrates and the “I” that suffers:

What I can affirm is how stories can bring existential or spiritual healing, and crucial to that healing is the capacity of stories to open a distance between the patient living in a diseased body and the ill person who is able to narrate illness. (Frank, 2009: 6).

This distinction may be a reason why sharing illness stories can be experienced as healing. Moreover, the abovementioned statement from one of the focus groups (“. . .you recognize yourself in the collective story (. . .) I had such a lonesome feeling – that I was alone in this, and it disappeared a little”) suggests that the collective story may have helped alleviate participants’ feelings of loneliness in their suffering.

The impact of dominant narratives about cancer and rehabilitation

The collective stories were not merely accounts of suffering and loss but also reflections of how participants’ narratives about health, illness, and suffering were shaped by the cultural and social narratives available to them. This influence is evident in how the collective stories represented the participants’ relationships with their bodies:

Some of us had a feeling, until now, until we got sick, that we were a team with our body. We could exercise and eat healthy, and in return, we could trust our body to take us through a half-marathon or whatever we wanted. But suddenly, we can’t trust it – it just falls ill and gets cancer. (Excerpt from the collective story, Course II)

A lot of us have the experience that, in the midst of life, we are made to feel very old. At a time when we should feel strong and beautiful and sexy. And it happened very suddenly (Excerpt from the collective story, Course I).

These excerpts illustrate that the sick body is portrayed as more than just “wounded” by illness, as described by Frank (2013). Additionally, they reveal that participants’ narratives are embedded within social and cultural narratives that suggest we should be able to control our bodies (Nettleton and Watson, 1998). This theme is also evident in sections of the collective stories that were “emplotted” (Steffen, 1997: 105) with positive conclusions:

It is like the body, in some days, becomes used to all the medicine you get. Like, think of all the drugs and stuff we put into our bodies, but it just keeps going and going. It’s crazy. It’s incredible how strong the body actually is. (Excerpt from the collective story, Course III)

Other scholars have highlighted how discourses in cancer rehabilitation can influence individuals with life-threatening illnesses to feel obligated to persevere and thrive despite their suffering. Managing the suffering of illness well can seem like a moral imperative (Hansen and Tjørnhøj-Thomsen, 2008), a theme that was also emphasized in the collective stories:

And then you find that you lose your motivation and faith, but at the same time, you feel that you must have it – faith and motivation – to keep living the way you do. But at the same time, it is lost, right? It’s like you are in a bit of a conflict there. (Excerpt from the collective story, Course II)

Some of us find that you need to accomplish many things. That now you need to live a lot, but actually, you can’t live a lot all of a sudden. Because maybe you’re working, or your kids are going to school, and it’s just a normal everyday life. (Excerpt from the collective story, Course II)

These excerpts reflect how participants, confronted with their own mortality, continued to shape their narratives based on their personal expectations and the societal expectations placed upon them. This situates the collective stories within the context of dominant illness narratives which frame cancer as a battle (Ellingson, 2017). They thereby serve not only as testimonies of experiences with advanced cancer but also as illustrations of how these experiences are shaped by social and cultural contexts surrounding the storytellers.

Reading and listening to the collective story

It is the final day of the four-day main stay at the Research Clinic. The participants are seated around the tables in the room. The anticipation is palpable; there is hardly any small talk. I long to go home. Perhaps the participants feel the same? The professionals introduce the purpose of this session. Everyone remains silent. The psychologist positions herself on the edge of the table, one leg touching the ground while the other hovers in the air. In her hands is the transcribed and edited collective story, which she is about to read aloud. The room is still as she begins. A chill runs down my spine. As she reads, I glance around at the participants. Some are visibly moved, their eyes welling with tears. Others stare out the window in deep concentration or look down at their hands. I struggle to suppress my own tears. Rarely have I been in a room so charged with emotion. For several minutes, the only sound is her voice, carrying the collective story from the page into the present. (Field notes, Course II)

As described in the field note, the atmosphere in the room was emotionally charged even before the reading began. For some of the participants, the reading of the collective story aloud in a plenary session was a pivotal component of the course, as illustrated in this interview dialog:

Participant: (. . .) It really gave me such a sense of being understood, of being seen. That someone truly gets it. So, I actually experienced it as ultra-important. One of the things that resonated most with me when I got home was hearing that story.

Interviewer: Have you looked at it again at home or re-read it?

Participant: Yes, and that was a bad idea.

Interviewer: It was a bad idea?

Participant: Yes, well (. . .) when I read it myself, it was just words. Not because I’m bad at reading, but because I didn’t feel embraced or heard the way I did when it was read aloud. I thought I could replicate that feeling [laughs], but it was different (. . .) It was delivered in a way that felt empathetic. I think it felt like being cared for because the tone of voice was soft (. . .) I don’t know if I would have felt differently if someone else had read it aloud, but I still think a large part of the effect came from hearing it read aloud. (Interview with participant Course III)

The reading of the collective story connected the participants’ initial storytelling to more embodied experiences during the reading, integrating all phases of the exercise into a cohesive whole. One participant explained that she was initially confused about what the course facilitators meant by “the collective story,” as she had not thought much about this in the first phase of the exercise. However, the reading transformed her understanding and moved her deeply (Focus group 2, Course II).

For others, hearing the collective story read aloud was a profound, almost spiritual experience. As illustrated in the field note excerpt, some participants either teared up or visibly cried during the reading. These experiences extended beyond the specific moment and context of the reading; they became impactful memories that participants carried with them, as expressed weeks later during the follow-up course:

Participant 1: What made the biggest impression on me was the collective story [others verbally agree]. It’s incredible. We sat there, 13 different people with very different [cancer] illnesses, all in completely different stages of this journey, and yet it was spot on. I mean, I think that’s amazing.

Participant 2: It’s a good starting exercise because it created an instant bond between us. You could relate to everybody (. . .)

Participant 3: It was so incredible, almost like a spiritual experience, hearing it read aloud (. . .) It was one of those moments where you think – though it’s unlikely – that maybe there is something more between heaven and earth. At least, that’s how it felt. It was something I brought home with me. I couldn’t believe how emotional I became. For someone like me – a large, strong man – it was such a powerful experience. (Focus group 3, Course II)

One participant tearfully described the reading as having a “therapeutic effect,” feeling “healing,” and making her feel “recognized” as a person, despite also feeling sorrowful (field notes, Course III). Another participant noted that after hearing the collective story read aloud, she felt more empathetic toward herself, as the story reflected the struggles she had experienced. In this way, the collective stories not only helped participants express their struggles but also enabled them to better understand their suffering. Advanced cancer calls for narratives about the ill body (Frank, 2013), but storytelling also occurs through bodily and communicative practices within relationships (Langellier and Peterson, 2011). As we have shown, it is important to explore the significance of the collective stories as both “a making and doing” (Peterson and Langellier, 2007: 205).

Sharing the collective stories in everyday life

Some participants chose to share the collective story with loved or close ones, while others discussed it in other cancer support groups they attended. For some, taking the collective story home to share with friends and family was seen as significant:

Well, I brought the collective story with me back home, of course, and I read it out loud to my family. And it was really lovely for me. Because they hadn’t grasped the point the way we do. I hadn’t been able to explain or word it, and people always just said, ‘I pity you’ but shut up, I don’t want to be someone you pity! But, when I had read it aloud, it just. . . I don’t know if it was as meaningful for them as it was for me, but it just made so much sense to me, because now they know what it’s really like. (Excerpt from Focus Group 4, Course II)

Although the excerpt describes a meaningful shared experience, it also notes that the significance of sharing the collective story was perhaps primarily felt by the participant and perhaps less so by the recipients. Other participants reported that when they shared the collective story with outsiders, the document’s meaningfulness to them was not always acknowledged by those recipients:

I had my neighbor read it, but I didn’t get that much feedback. I think I’ll use it for myself from now on, as a way of offering myself comfort. I can always take it out again and remind myself that I’m not alone in this. (Field notes, Course III)

Some participants described instances where their loved ones rejected the collective story because the content was too painful:

The collective story we made – it moved me a lot. And I have tried to show it to my husband, and he was touched by it, but it was too much for him. He just couldn’t. I thought that maybe he could use it to understand where I am on my trajectory, but it was too much for him. (Interview, Course II)

Participation in the course represented inclusion into a local moral world (Kleinman and Kleinman, 1991; Steffen, 1997). As previously demonstrated, participants’ accounts of suffering and loss were legitimized and valued within this community of fellow sufferers. However, sharing these stories with people outside this group proved challenging. Stories of suffering can burden the listener, and generally, listeners prefer illness narratives that emphasize hope and positivity (Frank, 2013). The difficulty participants experienced in sharing the collective stories illustrates how the course created a unique local world. Within this setting, participants could share stories of suffering and loss that might not be accepted or understood in their everyday lives outside this setting.

Discussion

Existing literature supports the idea that sharing stories of illness-related suffering can have a healing effect (Frank, 2013; Hydén, 1997; Kleinman, 1998). Our study demonstrates that the exercise of constructing a collective story was a meaningful experience for participants, particularly because it allowed them to integrate their individual experiences of living with advanced cancer into a shared story. This process helped alleviate feelings of suffering, loss, and loneliness, feelings and experiences which have also shown to be alleviated in other narrative interventions (Hydén, 1997; Midtgaard et al., 2006; Roikjaer et al., 2022; Yaskowich and Stam, 2003). Still, we found that the creation of a shared document and the act of reading it aloud was a crucial part of the exercise. We also found that participants faced challenges when attempting to share these stories with significant others, in their everyday lives. This indicates the significance of the community of peers sharing the story and the feelings of acceptance, belonging and connectedness as found in other studies (Roikjaer et al., 2022).

Collective stories differ from individual illness narratives in that they generally do not prescribe a model for future actions (Mattingly and Garro, 2000; Steffen, 1997). This distinction sets the collective story exercise apart from other narrative activities in the course, which often included professionally guided prompts encouraging participants to focus on meaning, life values, future actions, or drawing on past life experiences. Through the sharing of everyday lives and individual stories during the course and through the process of constructing collective stories about life with advanced cancer, a certain community was fostered – a local moral world where participants’ experiences of suffering and loss were not only acknowledged but also valued and legitimized (Kleinman and Kleinman, 1991). Simply being recognized and validated in their experiences of suffering appeared to provide participants with a sense of healing and relief.

Additionally, we have demonstrated how the collective stories were shaped by the social and cultural contexts in which they were embedded (Bury, 2001; Kleinman and Kleinman, 1991; Langellier and Peterson, 2011). Cancer is deeply entrenched in public discourse (Garden, 2010; Nielsen, 2019; Plage and Olson, 2021). Frank (2013) identifies three ideal types of illness narratives – restitution, quest, and chaos – and notes that restitution narratives are often favored in everyday life and societal discourse, including on social media (Donnelly, 2024; Frank, 2013). As a result, individual stories of suffering from incurable and life-threatening illnesses may remain untold in everyday contexts (Broom et al., 2019; Donnelly, 2024). Our study participants encountered similar challenges when sharing their collective stories. These findings further support the observation that dominant narratives not only shape the expression of illness experiences but also influence how those experiences are lived. This underscores the importance of understanding both individual and collective illness narratives within their broader cultural and social contexts. In this study, we found that constructing collective stories within the specific context of fellow sufferers created a safe space for sharing stories of suffering that might otherwise be suppressed by dominant illness narratives in participants’ daily lives. Also, a few participants found it challenging to align their own story or situation to “the local moral world” of the peers, which calls for attention to “dark logics” at play and for individual considerations to be taken in health care interventions (Bonell et al., 2015).

We argue that the construction of collective stories provided participants with a unique storytelling opportunity that is not directly comparable to other formal or informal storytelling activities in everyday life or narrative research, apart from a few exceptions (Jess et al., 2023; Steffen, 1997). This suggests the approach’s potential for broader application in rehabilitation and palliative care interventions for individuals with life-threatening illnesses. The study also highlights the importance of recognizing the socially situated nature of collective stories (Gubrium and Holstein, 2009; Steffen, 1997) and how their meaning was tied to the act of reading and the embodied experience of listening (Mattingly, 2010; Mattingly and Garro, 2000). In our study we also found, that the creation of a document to read aloud and to take with you, was important.

One aim of the collective story exercise was to create a document that could be shared, drawing theoretical inspiration from dignity therapy (Chochinov et al., 2005). However, unlike dignity therapy, which is based on participants’ life story and personal accounts of what matters most to them, the collective story was shaped by five specific prompts and focused on identifying commonly recognizable elements in the participants’ narratives. The collective stories explored in this study were essentially constructed through a creative, collaborative storytelling process involving both participants and course facilitators. Central to understanding these stories is recognizing how the five prompts and the sharing of individual narratives in groups and plenary sessions created a unique space where sharing experiences of cancer and its treatment was not only encouraged but expected.

We did not conduct a detailed analysis of the editing process, the transcription and the summarizing of the collective stories. As a result, our understanding of the construction process relies solely on the first author’s observations documented in fieldnotes, as well as participants’ responses shared during interviews and focus groups. Still, our trust in the editing process is supported both by others working with a concept of “collective story” (Richardson, 1997) and describing the editing process as transforming key themes into “threads in a collective tapestry” (Turner, 2017), and by the participants’ recognition of the story.

Despite this limitation, the various research methods employed in this study complemented one another well. As Riessman (2008: 71) notes, while problematic, a common approach in ethnographic research is “to reconstruct the narratives heard, creating summaries in field notes [and] readers must trust the investigator’s representation.” To enable readers to critically evaluate our interpretations, we have included excerpts from fieldnotes, interviews, and focus groups throughout the results section.

Our findings highlight the importance of conducting ethnographic fieldwork to explore the significance of rehabilitation efforts like the collective storytelling exercise. By adopting this perspective, we gained a deeper understanding of how and why the exercise was meaningful, while also exploring the complexities involved in creating, listening to, receiving, and sharing the collective story document.

Conclusion

Guided by questions about illness trajectories and treatment, the collective story revealed the suffering and losses of living with advanced cancer. Our findings demonstrate that the collective story process provided participants with meaningful healing experiences. For instance, experiencing that their individual illness narratives were integrated into a shared story helped alleviate feelings of loneliness and legitimized their experiences of suffering and loss, rendering them valuable within the specific course community, which we identified as a “local moral world.” We further illustrated that sharing these collective stories beyond the course setting was often perceived as challenging, underscoring the idea that their significance was deeply tied to the local moral world. Moreover, we highlighted how the collective stories were shaped by dominant cultural and social narratives, emphasizing the importance of understanding them within a broader context.

Footnotes

ORCID iDs

Henriette Søby Gärtner

Bodil H. Blix

Mette Raunkiær

Helle Timm

Ethical considerations

All participants received oral and written information before providing a written consent for participation in this study. This study follows the principles of the Helsinki Declaration (WMA, 2022), and the Committee on Health Research Ethics in the Region of Southern Denmark established that this study did not require an ethical approval (case number: 20202000-211). The study was approved by The University of Southern Denmark, stored under notification number 11.471.

Funding

Funding was provided by the Danish Knowledge Center for Rehabilitation and Palliative Care (REHPA), the Danish Cancer Society (grant number: R280-A16681) and University of Southern Denmark.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Author Biographies

Henriette Søby Gärtner holds a master’s degree in sociology from the University of Copenhagen and a PhD from the National Institute of Public Health, University of Southern Denmark. Her research primarily revolves around narrative methods, as well as rehabilitation and palliative care for individuals affected by cancer.

Bodil H. Blix, RN, PhD, is a professor at UiT - The Arctic University of Norway and at Western Norway University of Applied Sciences. Her research focuses on the intersections of critical gerontology and healthcare services. She specializes in qualitative research methods and has published extensively in the area of narrative inquiry.

Mette Raunkiær, RN, MSc, PhD, is a professor and the head of research at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care, Odense University Hospital, University of Southern Denmark. Her research interests include palliative care, rehabilitation, primary care, evaluation, and action research.

Helle Timm, MSc, PhD, is a professor at National Institute of Public Health, University of Southern Denmark. She also serves as a senior researcher at UCSF - Centre for Health Research, Copenhagen University Hospital, and as an affiliated professor at the Faculty of Health Sciences, University of the Faroe Islands. Her primary research interests include everyday life and life stories of severely ill individuals, concepts and practices of care, rehabilitation and palliative care, the history of health specialties, and qualitative research with an emphasis on narratives.

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