Publications

• Krawczyk, Marian; Solbrække, Kari Nyheim & Thoresen, Lisbeth (2025). Extending the concept of total pain to cancer survivorship. Frontiers in Sociology. 9. doi: 10.3389/fsoc.2024.1387096. Full text in Research Archive Show summary

  More people are surviving cancer than ever before. While there is a growing body of research on quality of life in cancer survivorship, we still do not have a good understanding of the lived complexities that many people experience after successful treatment. Inspired by the literature on existential concerns in cancer survivorship, we consider how the concept of ‘total pain’, which emerged from the contemporary hospice movement, may be useful to think about experiences of suffering in cancer survivorship, using interviews from a Norwegian research project Rethinking Cancer Survivorship. We find that the concept of total pain encapsulates concerns for existential suffering and also has unique features which offer new forms of understanding and action. This includes its origins within cancer care; how it addresses the individual as a whole and re-centres the body; its reliance on and recognition of the limits of narrative; how it attends to relationality; and how the concept may afford unique insights for service development. Dying from cancer and surviving cancer are different processes, but total pain can serve as a useful conceptual compass to orient our understandings of those who experience this illness, regardless of disease outcome

• Synnes, Oddgeir Arne & Bondevik, Hilde (2024). Repair and Re-enchantment: Reading and Writing Cancer. In Rasmussen, Anders Juhl & Sodemann, Morten (Ed.), Narrative Medicine: Trauma and Ethics. Vernon Press. ISSN 9781648898457. p. 91–101. Full text in Research Archive
• Kvaale, Kaja; Synnes, Oddgeir Arne; Lian, Olaug Synnøve & Bondevik, Hilde (2024). “That bastard chose me”: the use of metaphor in women’s cancer blogs. Qualitative Research in Medicine & Healthcare. 8(2). doi: 10.4081/qrmh.2024.11908. Full text in Research Archive Show summary

  ABSTRACT Metaphors play a significant role in how cancer is experienced and discussed. This study delves into the utilization of metaphors by women bloggers grappling with colorectal and gynecological cancers. By focusing on cancer types less represented in mainstream media, we aim to shed light on cancer cultures associated with body areas often considered taboo. Our findings reveal that widely rec- ognized expressions and stories about cancer, such as the metaphors of battle and narratives promoting optimism and heroism in the face of illness, are deeply ingrained. However, a notable discovery is the prevalence of personification alongside these conventional expressions. Personifying cancer endows it with human characteristics, providing an outlet for bloggers to express their fear and frustration, including articulating feelings of sadness and anger, diverging from narratives centered on heroism and positive thinking. Furthermore, our analysis reveals a significant emphasis on death, underscoring that despite advancements in treatment, bloggers still perceive cancer as highly lethal. Personification can serve both detrimental and therapeutic purposes for bloggers and for societal perceptions of cancer survivorship, both reinforcing and opposing dominant Western discourses sur- rounding the illness. These findings enrich our understanding of cognitive and cultural tools used to describe cancer within contemporary Western society.

• Fauske, Lena & Bondevik, Hilde (2024). Kreftoverlevelse – hva ligger i begrepet, og hvem favner det? In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 31–57. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Bondevik, Hilde & Synnes, Oddgeir (2024). Å artikulere kreftoverlevelse gjennom poetisk språk. In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 191–215. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Botn, Cecilie Strauman & Solbrække, Kari Nyheim (2024). Når helsetjenesten definerer hvordan man skal bli frisk. In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 121–144. doi: 10.62342/SAP.OA.2006. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Solbrække, Kari Nyheim (2024). Om kolorektal kreft og den (over)levde kroppens betydning. In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 145–168. doi: 10.62342/SAP.OA.2006. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Solbrække, Kari Nyheim & Bondevik, Hilde (2024). Kreftoverlevelse på nye måter – en introduksjon. In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 7–19. doi: 10.62342/SAP.OA.2001. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Thoresen, Lisbeth (2024). "Total pain" - et nøkkelbegrep i den palliative omsorgen for døende pasienter Men hva når pasienten overlever? In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 215–233. doi: 10.62342/SAP.OA.2010. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Andersen, Eva-Mari (2023). As if I was a spacecraft returning to Earth’s atmosphere. Expanding insights into illness narratives and childhood cancer through evocative autoethnography. Health. ISSN 1363-4593. doi: 10.1177/13634593231200123. Full text in Research Archive Show summary

  Today, a majority of children diagnosed with cancer are expected to grow up and live—hopefully until old age. Still, knowledge of the lived experience of childhood cancer survivors is sparse. In pursuit of knowledge expansion, by combining my intersecting roles as an academic, educational counselor, and childhood cancer survivor, I approach my personal illness narrative. By means of evocative autoethnography, I write intentionally vulnerably about my experiences and make them available for consideration. I explore my narrative through archives, artifacts, memories of the past, and conversations evoked in the present. I re-visit the cultural landscape of a southern Norwegian girl growing up in the 00s with cancer. Through this, my illness narrative presents as positioned, tangled, and interwoven with a developmental trajectory. Specific educational experiences seem to linger, and many are related to being absent from or re-entering school after the onset of illness. To grasp the intersecting and conflicting experiences of being very ill while also young, I suggest Erik Erikson’s moratorium as a key concept. To complement Arthur Frank’s illness narratives of restitution, chaos, and quest, I establish the moratorium narrative. As a fresh resource, the moratorium narrative underlines the need to make sensitive our academic community’s gaze on illness trajectories unfolding in formative phases and illness narratives defined by growing up. By providing a point of recognition that prompts elaboration, this could also provide the young and very ill with a much-needed narrative space of opportunity, of which more narratives are invited and insisted upon.

• Fauske, Lena; Jebsen, Nina Louise; Bondevik, Hilde & Bruland, Øyvind (2023). Exploring the Patient Perspective of Bone Sarcoma Survivors Who Have Undergone Particle Radiotherapy Abroad. Anticancer Research. ISSN 0250-7005. 43(5), p. 2031–2039. doi: 10.21873/anticanres.16364. Full text in Research Archive Show summary

  Background/Aim: Sarcoma patients’ experiences of their health-related quality of life and late effects following particle therapy are sparse. Such knowledge is essential to optimize treatment compliance and follow-up care related to this rapidly developing, but still centralized treatment modality. Patients and Methods: This qualitative study has an explorative design and applies a phenomenological and hermeneutical approach based on semi-structured interviews with 12 bone sarcoma patients who had undergone particle therapy abroad. The data were interpreted using thematic analysis. Results: Several of the participants called for more information about how the treatment would be carried out, its acute side effects and late complications. Most participants had positive experiences from the treatment and their stay abroad, but several struggled with late effects and other challenges. Themes that emerged from the analysis were “importance of being prepared”, “treatment and stay abroad”, “basically healthy, but with health problems and challenges”. Conclusion: Oncologists who inform and refer patients to particle therapy abroad must have sufficient experience of this treatment modality, prognoses, acute side effects, and late complications. Findings derived from this study may improve treatment preparation and compliance, enhance understanding of individual patient challenges to reduce stress and worry, and lead to better follow-up care and consequently quality of life of this selected group of bone sarcoma patients.

• Bjørvik, Eira; Thoresen, Lisbeth; Salamonsen, Anita; Fauske, Lena & Solbrække, Kari Nyheim (2023). Exploring the Impact of Interview Location on Knowledge Development. International Journal of Qualitative Methods (IJQM). 22. doi: 10.1177/16094069231168483. Full text in Research Archive Show summary

  In ethnographic and participatory studies, the study location is often claimed to have an obvious significance, whereas, in the methodology literature on qualitative interviews, this aspect is frequently treated as a pragmatic issue. Based on this background, there are claims that the location of an interview should be understood as a fundamental, active aspect of the research process as well as a sensitizing concept. Considering this ambition, the aim of this article is to develop further insights into how different interview locations may contribute to knowledge development regarding the issue being studied. Based upon a study on cancer survivorship and experiences from conducting interviews in three different settings, namely the participants’ home, an office on the university’s premises, and a cancer care center located at a hospital, this paper illustrates how the choice of location may have an impact and evoke insights and knowledge regarding the research issue. The interviews conducted in private homes provided insights into how life post cancer implicated a more house-bound lifestyle than before, with a risk of becoming isolated. The hospital setting yielded responses that were more mixed. While some could not stand coming there, others considered the hospital to represent safety. The third interview location, an office at the university, was the most ‘formal’ location and seemed to resonate with the participants’ present busy but exhausting work life.

• Kvaale, Kaja; Lian, Olaug S. & Bondevik, Hilde (2022). ‘Beyond my Control’: Dealing with the Existential Uncertainty of Cancer in Online Texts. Illness, Crisis and Loss. ISSN 1054-1373. 32(2), p. 192–208. doi: 10.1177/10541373221122874. Full text in Research Archive Show summary

  In this paper, we explore how existential aspects of being diagnosed and living with cancer are shared in stories that are publicly communicated online. Through a narrative analysis of online texts and blogs, we explore how people deal with their cancer experiences, how cultural norms about illness are expressed in their stories and why they write and publish their stories online. We found that the writers described cancer diagnosis as a defining moment in their lives. They portrayed it as a crisis that was followed by unpredictability, doubt, grief and loss, fitting with the term ‘existential uncertainty’. Writing and sharing their stories online, connecting with others and staying positive were ways of dealing with this uncertainty. These naturally occurring data offer insights into phenomena that are not easily accessed in a clinical setting; moreover, they provide unique insights into the cultural norms in which online illness narratives are embedded.

• Andersen, Eva-Mari (2022). Surviving cancer while young A meta-ethnography through temporal, social, interactional and personal experiences of survival. SSM - Qualitative Research in Health. 2, p. 1–9. doi: 10.1016/j.ssmqr.2022.100066. Full text in Research Archive Show summary

  Today, in Western countries, a majority of children, adolescents, and young adults diagnosed with cancer are expected to survive, potentially and hopefully until old age. There is a need for research that expands our knowledge of the ways in which young adult cancer survivors are understood, understand themselves, and narrate their lives. This meta-ethnographic review addresses this need, through the synthesis of ten qualitative research articles exploring the narratives of young adult cancer survivors, with a main focus put on the experiences described by survivors under the age of 30. In the synthesis, the narrated experiences of the young adult cancer survivors are presented through temporal, social, interactional, and personal dimensions. Although complex and intrusive, and constantly calling the young adult cancer survivors to action, these experiences are described as being masked and silenced. Seen together, they present surviving cancer while young as a unique way of being in the world, and as a multifaceted phenomenon present in everyday life and in all arenas of life. In conclusion, the synthesis prompts exploring young adults' survival-related experiences as credible and independent subjects of knowledge, but also as a common and shared responsibility.

• Hjulstad, Kristine; Bondevik, Hilde; Hem, Marit Helene & Nortvedt, Per (2022). “Struck down by cancer with no old life to fall back on” a clinical study of illness experiences among Norwegian adolescent and young adult cancer survivors investigating the ethical implications of their illness narratives. Cancer Reports. doi: 10.1002/cnr2.1765. Full text in Research Archive Show summary

  Background: Cancer is a leading cause of death among people 15–24 years of age. Increasing numbers of cancer patients survive. Extensive cancer therapy may cause wide-ranging somatic and psychosocial challenges in the lives of the survivors. Research indicates adolescent and young adult cancer (AYA) survivors need to be seen as a distinctive group of survivors having unique health care needs. The existing literature suggests the need for specific follow-up care programs addressing the challenges of AYAs and providing them access to specialized after care, as well as a need to explore AYA cancer survivors' own illness experiences. Aims: Through the theoretical lens of narrative medicine and care ethics, our purpose was to investigate the particular challenges encountered by the AYA cancer survivors, and how they view themselves in light of their illness experiences. We ask how AYA cancer survivors are met and understood by their medical professionals? Methods: This study applied a qualitative method using a narrative research design by collecting self-stories of illness in order to conceptualize human experiences of illness among AYA cancer survivors. Eight in-depth interviews were conducted using a narrative analysis according to the narrative plots of restitution, chaos and quest, as suggested by Arthur Frank. Results: Hopelessness and a struggle to take part in the activities of daily life as survivors of cancer were revealed. Too ill to fully take part in the society, the AYA cancer survivors strive to be understood for what they are, namely young survivors. Conclusion: The survivors´stories reveal a moral imperative that needs to be honored by medical professionals in order to improve cancer care. Cancer survivorship may be a lifelong process necessitating long-term follow-up care. With the lack of specific care programs for AYA cancer survivors, follow-up care is provided by general practitioners or other medical professionals, who often lack expertise in the unique challenges faced by AYA survivors. Because they feel their needs are unmet and their stories not understood, the AYA survivors might experience a sense of abandonment By adopting a care ethics and narrative medicine approach we provide medical professionals a theoretical framework to better understand and care for AYA cancer survivors. Clinical trial number is 2012/1141.

• Fauske, Lena; Wærstad, Pernille Holter; Hompland, Ivar & Bruland, Øyvind (2022). Hope as a Lifeline: Imatinib Discontinuation in Patients With Oligometastatic Gastrointestinal Stromal Tumours. Anticancer Research. ISSN 0250-7005. 42(2), p. 955–963. doi: 10.21873/anticanres.15555. Full text in Research Archive
• Solbrække, Kari Nyheim & Bondevik, Hilde (2021). Kreftoverlevelse på nye måter – om hvordan kreft erfares og omtales. In Botten, Grete Synøve (Eds.), Mangfold og engasjement i ti år. Institutt for helse og samfunn ved Universitetet i Oslo 2010-2020.. Norwegian Medical Society. ISSN 9788292871768. p. 157–165. Full text in Research Archive Show summary

  Stadig flere rammes av kreft. Samtidig er fremskrittene innen diagnostikk og behandling store og antall kreftoverlevere har økt betraktelig. Ved utgangen av 2020 hadde rundt 300 000 personer i Norge overlevd minst én kreftdiagnose. De omfattende behandlingene kreftpasienter gjennomgår innebærer at mange lever med senskader, traumatiske erfaringer og utfordringer. Med den betydelige veksten i antall kreftoverlevere som et utgangspunkt, er hovedmålet med vårt NFR-prosjekt Rethinking Cancer å problematisere kategorien «kreftoverlever» og dets helsepolitiske og kulturelle implikasjoner. Et annet mål er å utvikle ny kunnskap om hvordan overlevere etter gynekologisk kreft, prostatakreft og mage-tarm-kreft omtaler, nedtegner og billedlig sett representerer sine krefterfaringer, og i hvilken grad disse representasjonene henger sammen med mer etablerte og synlige diskurser om kreftoverlevelse. Et tredje mål er å bygge bro over denne kunnskapen til ulike pasientgrupper, helsemyndigheter og klinisk praksis, og dermed muliggjøre en kreftomsorg som er mer inkluderende og differensiert enn dagens. Samlet er målene i prosjektet sterkt fundert i behovet for å få bedre forståelse av hvordan menneskelig eksistens og teknologiske innovasjoner krysser hverandre, det vil si hvordan forholdet mellom medisinske innovasjoner og befolkningens forestillinger og praksiser knyttet til helse, sykdom, kropp og livskvalitet er flettet sammen i vår egen tid.

• Fauske, Lena; Bruland, Øyvind; Dahl, Alv A; Myklebostad, Åse & Reme, Silje Endresen (2021). Does the lightning process training programme reduce chronic fatigue in adolescent and young adult cancer survivors? A mixed-methods pilot study. Cancers. 13(16), p. 1–13. doi: 10.3390/cancers13164076. Full text in Research Archive Show summary

  Chronic fatigue is a common late adverse effect following oncological therapies. No effective treatments exist, although cognitive behaviour therapy has been reported to offer some benefits. The Lightning Process® is a three-day educational training programme with a six-month follow-up comprising elements derived from cognitive behaviour therapy, neurolinguistic programming, and stress theory, which are presented in a condensed form. This pilot intervention study represents the first systematic account of the experience and perceived efficacy of the LP training programme in 13 adolescent and young adult cancer survivors treated for sarcoma or Hodgkin lymphoma. Statistically significant improvements were documented for all the patient-reported outcome measure (PROM) questionnaires comparing the pre- and post-intervention periods. The qualitative findings of the interviews corresponded well with the PROMs findings, as participants emphasised that they now experienced both less fatigue and explicit improvement in their energy level.

• Frank, Arthur W. & Solbrække, Kari Nyheim (2021). Becoming a Cancer Survivor: An Experiment in Dialogical Health Research. Health. ISSN 1363-4593. doi: 10.1177/13634593211005178. Full text in Research Archive Show summary

  The article makes cancer survivorship the topic of an experiment in a form of writing we call dialogical response. First, in the style of autoethnography, each author presents an account of her or his long-term survivorship of cancer and the issues that involves. Less conventionally, we then respond each to the other’s story. The article seeks to contribute to an in-depth understanding of long-term cancer survivorship. More important, we offer it as an example of a form of writing rarely practiced in health research: speaking to those who participate in research, rather than speaking about those people. Among the multiple theoretical implications that could be explored, we consider Foucault’s concept of subjectification. Our argument is that recognising the discursive formulation of the subject can and should be complemented by recognition of the local, immediate dialogical formulation of subjects. Rather than presenting research findings about cancer survivors, we offer a performative enactment of survivorship as an ongoing process of dialogical exchange. We show ourselves, responding to each other, in the process of becoming the cancer survivors we are as a result of those responses.

• Kvåle, Kirsti; Haugen, Dagny Faksvåg & Synnes, Oddgeir (2020). Patients' illness narratives - From being healthy to living with incurable cancer: Encounters with doctors through the disease trajectory. Cancer Reports. 3, p. 1–7. doi: 10.1002/cnr2.1227. Full text in Research Archive
• Fauske, Lena; Hompland, Ivar; Lorem, Geir F; Hall, Kirsten Sundby & Bondevik, Hilde (2020). Striving towards Normality in Daily Life: A Qualitative Study of Patients Living with Metastatic Gastrointestinal Stromal Tumour in Long-Term Clinical Remission. Sarcoma. ISSN 1357-714X. doi: 10.1155/2020/1814394. Full text in Research Archive Show summary

  <i>Background</i> - This study explored how patients with metastatic gastrointestinal stromal tumour (GIST) experience the psychosocial challenges associated with their disease and its treatment, as well as how that experience influenced their practical, relational, vocational, and existential life. <p> <p><i>Methods</i> - This qualitative study has an explorative design and applied a phenomenological and hermeneutical approach. We conducted in-depth, semistructured interviews with 20 patients with metastatic GIST in long-term clinical remission. The gathered data were interpreted using a thematic analysis. <p> <p><i>Results</i> - Living with metastatic GIST, as well as the side effects of the required medication, led to changes that limited the participants’ daily life. They expressed how tiredness, impaired memory, and physical challenges were among the detrimental impacts of the disease on their family life, vocational life, social life, and leisure time. Adjustments were necessary to ensure they had sufficient energy to cope with the practical and relational aspects of everyday life. Feelings of uncertainty stemming from drug resistance, disease progression, and the possibility of early death were also experienced as challenging. Half the participants stated that it was difficult to keep negative mental health issues at bay, and all of them considered the time spent waiting for their scheduled follow-up scan to be burdensome. <p> <p><i>Conclusions</i> - It is important to focus increased attention on how the daily practical and psychosocial life of patients with chronic cancer, including metastatic GIST, is affected by their disease. Doing so might provide health-care workers with clues regarding how best to guide and support such patients throughout their emotional journey and, therefore, to improve their quality of life. As new medical treatments can also prolong survival and induce long-term clinical remission in relation to several other forms of metastatic cancer, the findings concerning GIST reported in this study might have widespread implications.

• Wahl, Astrid Klopstad & Bondevik, Hilde (2020). Mellom livserfaring og fagkunnskap under behandling med cellegift. Tidsskrift for Den norske legeforening (Tidsskriftet). ISSN 0029-2001. doi: 10.4045/tidsskr.20.0396. Full text in Research Archive
• Synnes, Oddgeir & Frank, Arthur W. (2020). Home as Cultural Imaginary at the End of Life. In Pasveer, Bernike; Synnes, Oddgeir & Moser, Ingunn Brita (Ed.), Ways of Home Making in Care for Later Life. Palgrave Macmillan. ISSN 9789811504051. p. 19–40. doi: 10.1007/978-981-15-0406-8_2. Full text in Research Archive
• Fauske, Lena; Hompland, Ivar; Lorem, Geir F; Bondevik, Hilde & Bruland, Øyvind (2019). Perspectives on treatment side effects in patients with metastatic gastrointestinal stromal tumour: a qualitative study. Clinical Sarcoma Research. 9(6). doi: 10.1186/s13569-019-0116-3. Full text in Research Archive Show summary

  <i>Background</i>: This study aims to explore how patients with metastatic gastrointestinal stromal tumour (GIST) experience the adverse efects of treatment, as expressed by the individuals themselves.<p> <p><i>Methods</i>: A qualitative, phenomenological and hermeneutic design was applied. Twenty patients with metastatic GIST participated in the study. In-depth and semi-structured interviews were conducted and then analysed by means of an inductive thematic analysis.<p> <p><i>Results</i>: The majority of participants reported experiencing a changed life after being diagnosed with metastatic GIST and commencing systemic medical treatment. More than half of them described partially debilitating self-reported side effects and complaints that had a detrimental impact on their lives. The life-prolonging tyrosine kinase inhibitor treatment prompted the participants to adapt to ‘a new normal’. Several participants also emphasised having an ambivalent relationship with the pill, although most looked upon it as ‘a friend’ because it kept them alive. Paradoxically, while the participants struggled with the side effects of treatment as well as the consequences of living with a chronic cancer, half of them considered themselves to be healthy and, thus, to not actually be cancer patients.<p> <p><i>Conclusions</i>: We observed a gap between the biomedical perspective on disease that health professionals typically adopt and the individual experiences of patients living with metastatic GIST. For those patients who are living in limbo between having metastatic cancer and offered an effective treatment, a holistic view of health on the part of their healthcare providers seems crucial. A vital goal should hence be to improve communication between healthcare professionals and GIST patients so as to secure an individualised follow-up with guidance on coping with, and adapting to, their new normal.

• Fauske, Lena; Bondevik, Hilde; Ahlberg, Karin & Bjørndal, Arild (2019). Identifying bone sarcoma survivors facing psychosocial challenges. A study of trajectories following treatment. European Journal of Cancer Care. ISSN 0961-5423. doi: 10.1111/ecc.13119. Full text in Research Archive
• Stene-Johansen, Knut & Bondevik, Hilde (2018). Fritz Zorn. Kreft i litterært perspektiv. Filologen. ISSN 0807-9250. p. 38–45. Full text in Research Archive Show summary

  Det følgende er et utdrag fra kapittelet "Kreft – eller spredningens logikk" i boken Sykdom som litteratur (Bondevik/Stene-Johansen 2011). Det er ett av bokens 13 kapitler som tar for seg hver sin medisinske diagnose og hvordan denne er beskrevet i litteraturen. Siden Sykdom som litteratur kom ut har mye skjedd innen kreftforskningen; mange former for kreft har fått enda bedre behandlingsmuligheter, avansert medisinsk teknologi og tidligere diagnostisering gjør at stadig flere overlever, og man taler sågar om kronisk kreft. Samtidig lever folk enger, noe som medfører at sykdommen også får en større utbredelse.

• Williams, Sean & Solbrække, Kari (2018). “Cancer Coiffures”: Embodied Storylines of Cancer Patienthood and Survivorship in the Consumerist Cultural Imaginary. Body & Society. ISSN 1357-034X. p. 1–26. doi: 10.1177/1357034X18781951. Full text in Research Archive Show summary

  Cancer patienthood and survivorship are often narrated as stories about hair and wigs. The following article examines cultural representations of cancer in mainstream memoirs, films, and on TV across Western European and American contexts. These representations are both the ideological substrate and a subtly subversive staging of a newly globalized cancer culture that expresses itself as an embodied discourse of individual experience. Wigs have become staples of an alternative story of especially women’s cancer experience, one that contrasts with the advertising slogans of what has been termed ‘Cancer Inc.’ But wigs are also a prop for consumerist self-(re)invention and can be appropriated stereotypically, with regard to stock gendered expectations – despite and alongside their subversive potential.

• Kvåle, Kirsti & Synnes, Oddgeir (2018). Living with life-prolonging chemotherapy-control and meaning-making in the tension between life and death. European Journal of Cancer Care. ISSN 0961-5423. 27(e12770). doi: 10.1111/ecc.12770. Full text in Research Archive
• Fauske, Lena; Lorem, Geir F; Grov, Ellen Karine & Bondevik, Hilde (2016). Changes in the body image of bone sarcoma survivors following surgical treatment - A qualitative study. Journal of Surgical Oncology. ISSN 0022-4790. 113(2), p. 229–234. doi: 10.1002/jso.24138. Full text in Research Archive Show summary

  <b>Background and Objectives:</b> Among several long-term effects, people treated for cancer may experience an altered appearance. Our study aims to identify how visible body changes following surgical treatment affect the life and identity of primary bone sarcoma survivors 3–10 years after diagnosis. A qualitative, phenomenological, and hermeneutic design was applied. <b> Methods:</b> Sarcoma survivors (n ¼ 18) who were previously treated at Norwegian Radium Hospital, Oslo University Hospital, participated in the study. In-depth and semi-structured interviews were conducted and analyzed using inductive thematic analysis. <b> Results:</b> The main finding of this study concerned how altered appearance after bone cancer treatment in the hip/pelvis or lower extremities affected the participants’ self-esteem. Half of the participants expressed concerns about their visible differences, particularly those with functional impairment. They felt that it is important to hide the bodily signs of changes to appear as normal as possible, as well as attractive and healthy. They describe, with specific examples, how these changes influence their self-realization, especially their social life. <b> Conclusions:</b> Healthcare providers who guide bone sarcoma survivors during follow-up should develop a comprehensive understanding of what it means to cope with a changed and challenging body.

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• Solbrække, Kari Nyheim & Bondevik, Hilde (2024). Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISBN 9788230403310. 253 p. doi: 10.62342/SAP.OA.2000. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

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• Synnes, Oddgeir & Bondevik, Hilde (2024). The healing power of creative writing in a safe group setting. Full text in Research Archive
• Solbrække, Kari Nyheim & Bondevik, Hilde (2024). "Kreftoverlevelse på nye måter». Presentasjon av forskningsfunn og samtale. Full text in Research Archive
• Solbrække, Kari Nyheim (2024). Kreftoverlevelse i et sosio-kulturelt perspektiv; Noen hovedfunn knyttet til livet etter gynekologisk kreft. Full text in Research Archive
• Solbrække, Kari Nyheim (2024). Unpacking and contextualizing aspects of embodiment and gender in gynecological cancer survivorship. Full text in Research Archive
• Solbrække, Kari Nyheim & Bondevik, Hilde (2024). Kreftoverlevelse som tverrfaglig forskningsfelt. Full text in Research Archive
• Solbrække, Kari Nyheim (2024). Å gjøre stomien til en del av seg selv. Full text in Research Archive
• Solbrække, Kari Nyheim (2023). (Un)making the stoma as part of oneself. Full text in Research Archive
• Solbrække, Kari Nyheim (2023). Gjør sykdom oss sterkere? Mange syke får høre at motgangen vil gjøre dem sterkere. Men stemmer det. Fordøyelsen. Tidsskrift for landsforeningen mot fordøyelsessykdommer. Full text in Research Archive
• Kvaale, Kaja (2022). Podcast: Kaja Kvaale og Eira Bjørvik – forsker på livet etter kreft. [Internet]. https://www.kreftkompasset.no/. Full text in Research Archive
• Kvaale, Kaja (2022). Å blogge seg gjennom kreft og overlevelse. Full text in Research Archive
• Bondevik, Hilde (2022). Litterære strategier ved selvopplevd kreft – om kreftfortellinger i ulike sjangre i Norge. Full text in Research Archive
• Solbrække, Kari Nyheim (2022). Å overleve kreft: Hvordan har vi det etterpå? Full text in Research Archive
• Bondevik, Hilde & Synnes, Oddgeir (2021). Kreativ skriving for kreftpasienter. Nettverket Carcinor. p. 10–12. Full text in Research Archive
• Synnes, Oddgeir & Bondevik, Hilde (2021). Å artikulere kreftoverlevelse gjennom poetisk språk. Full text in Research Archive
• Solbrække, Kari Nyheim & Bondevik, Hilde (2021). Investigating narrative citizenship in the context of cancer. Full text in Research Archive
• Solbrække, Kari Nyheim & Bondevik, Hilde (2021). Rethinking cancer survivorship. Exploring the foundations of research on how humans experience and voice cancer in a Norwegian context. Full text in Research Archive
• Solbrække, Kari Nyheim (2021). Om autoetnografisk metode. Eksempel frå egen forsking. Full text in Research Archive
• Solbrække, Kari Nyheim & Bondevik, Hilde (2020). Hva vil det si å erfare kreft? Full text in Research Archive
• Synnes, Oddgeir (2018). Poesi og forteljing som palliativ omsorg. Full text in Research Archive
• Synnes, Oddgeir (2018). Forteljingar ved livets slutt. Full text in Research Archive
• Kvaale, Kaja (2025). Marginalised Experiences and Dominant Narratives: Exploring Pelvic and Colorectal Cancers in Blogs. Universitetet i Oslo. ISSN 9788234805806. Full text in Research Archive Show summary

  This dissertation is positioned within the interdisciplinary fields of medical humanities and sociology, examining how individuals with cancer use blogging as a medium to narrate and make sense of their illness experiences. The study focuses on pelvic and colorectal cancer—two prevalent yet often stigmatized cancer types in Norway. The research explores three key questions: (1) How do bloggers articulate the existential challenges associated with cancer? (2) What linguistic and metaphorical strategies do they employ to conceptualize their illness? (3) How do they construct narrative identities through blogging? The study adopts a hermeneutic methodology, conducting a qualitative textual analysis of selected personal cancer blogs to identify recurring themes, narrative structures, and cultural framings of illness and survival. The findings indicate that blogging serves as a crucial platform for meaning-making, emotional processing, and community-building. Bloggers use metaphors, particularly personifications of cancer, to externalize and negotiate their experiences, and their narratives often challenge dominant discourses of cancer survivorship. Furthermore, the study reveals how cultural norms shape which illness experiences are shared and which remain marginalized in public discourse. By incorporating Norwegian-language blogs into the broader field of illness narratives, this dissertation contributes to existing research on cancer storytelling by highlighting the complexities of narrating a stigmatized illness. The study underscores the significance of digital storytelling as a tool for self-representation, social engagement, and identity reconstruction in the context of serious illness.

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