Exploring the Patient Perspective of Bone Sarcoma Survivors Who Have Undergone Particle Radiotherapy Abroad

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.publishedVersio

Negative and positive consequences of cancer treatment experienced by long-term osteosarcoma survivors : a qualitative study

This work was supported by the Helse Sor Ost, grant no. 2013032.Background: Our study aimed to explore how survivors of osteosarcoma of the lower extremity experience physical and psychosocial late effects several years after undergoing arduous treatment. A qualitative, phenomenological and hermeneutic approach was applied. Materials and Methods: Osteosarcoma survivors (n=8) who were previously treated at the Norwegian Radium Hospital, Oslo University Hospital, participated in the study. In-depth and semi-structured interviews were conducted. The interviews were analysed using inductive thematic analysis. Results: Three to ten years after diagnosis, the majority of participants had experienced both negative and positive consequences following treatment. Changes in activity and exclusion from participation in different areas were the most challenging consequences. Several of their experiences are similar to those described by people with disabilities. Conclusion: It is important to understand osteosarcoma survivors’ own experiences in order to assist those who struggle to reorient in life and to construct a new identity for themselves.PostprintPeer reviewe

“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

This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.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.publishedVersio

Absent organs – Present selves: Exploring embodiment and gender identity in young Norwegian women’s accounts of hysterectomy

In this paper, we explore how younger women in Norway construct their embodiment and sense of self after hysterectomy. To do this, we conducted in-depth interviews with eight ethnic Norwegian women aged between 25 and 43 who had undergone hysterectomy. In line with a broad phenomenological approach to illness, the study was designed to explore the trajectories of the women’s illness with a specific focus on concrete human experience and identity claims from a subjective point of view. In analysing the stories, we encountered feelings of suffering due to the loss of the uterus as well as profound side-effects, such as menopause. However, we also found evidence of relief from being treated for heavy bleeding and serious illness. In order to accentuate the individual voices in these illness stories, we chose a case-oriented analysis in line with Radley and Chamberlain (2001) and Riessman (2008). From this, two main seemingly contradictory storylines stood out: They have removed what made me a woman versus Without a uterus, I feel more like a woman. We also identified heteronormativity as an unstated issue in both these storylines and in the research data as a whole. Acknowledging diversity in the way women experience hysterectomy is important for a better understanding of the ways in which hysterectomy may affect women as humans as well as for developing more cultural competent healthcare services for this group

Jeg steg inn i en annen historie. Om Simone de Beauvoirs bok En lett og rolig død

Det er en utbredt oppfatning at døden er lite synlig i vår kultur og at vi snakker lite om den. Utgangspunktet for antologien Døden i livet er å utfordre disse forestillingene fra ulike perspektiv og fagfelt. Forfatterne understreker at døden er til stede i våre liv på mange måter. Vi ser den og opplever den i våre fysiske omgivelser, for eksempel der hvor vi har innrettet oss for å minnes de døde. Vi hører den eller leser om den i taler, dikt, musikalske tekster, salmer, nekrologer, biografier, bildebøker, romaner og avistekster. Vi uttaler oss om død i samtaler med hverandre, i karakteristikker av avdøde og gjennom fagspråk om sykdom og død. Vi viser vår forståelse av døden gjennom visuelle uttrykk som i avisbilder, i bokillustrasjoner og i de språklige bildene og metaforene vi bruker når vi omtaler den. Døden i livet er en tverrfaglig, vitenskapelig antologi. Boken består av 12 fagfellevurderte kapitler og henvender seg til forskere og studenter som har interesse av å sette seg inn i hvordan døden er til stede i vår kultur. Kapitlene er skrevet av forskere fra ulike fagfelt som helsefag, pedagogikk, idéhistorie, religionsvitenskap, litteraturvitenskap, språkvitenskap og retorikk

Litterære strategiar og sjølvopplevd kreft

In this article four literary works that thematise cancer are analysed in light of two recent trends in society: (1) the emergence of the bodily turn and the writing of one’s cancer experience through illness narratives, and (2) the increasing tendency towards an autobiographically influenced literature. The literary works comprise the novel Ei vinterreise (A Winter’s Journey) by Ragnar Hovland (2001), the novel La meg sove til dette bare er en drøm (Let Me Sleep Until This is Just a Dream) by Ellisiv Stifoss-Hanssen (2014), and two poetry collections, Den tredje porten (The Third Gate) by Åse-Marie Nesse (2000) and Muntre dødsdikt og andre dikt (Cheerful Death Poems and Other Poems) by Jan Jakob Tønseth (2015). All four authors have or had cancer at the time of writing, and the four works open up for a reading where the cancer is closely related to the life of the author. The article examines what the different books achieve by writing about cancer experiences in literary genres. A close reading of the books reveals that a literary representation opens up a more nuanced investigation of cancer experiences than what is found in more traditional illness narratives

Litterære strategiar og sjølvopplevd kreft

Abstract In this article four literary works that thematise cancer are analysed in light of two recent trends in society: (1) the emergence of the bodily turn and the writing of one’s cancer experience through illness narratives, and (2) the increasing tendency towards an autobiographically influenced literature. The literary works comprise the novel Ei vinterreise (A Winter’s Journey) by Ragnar Hovland (2001), the novel La meg sove til dette bare er en drøm (Let Me Sleep Until This is Just a Dream) by Ellisiv Stifoss-Hanssen (2014), and two poetry collections, Den tredje porten (The Third Gate) by Åse-Marie Nesse (2000) and Muntre dødsdikt og andre dikt (Cheerful Death Poems and Other Poems) by Jan Jakob Tønseth (2015). All four authors have or had cancer at the time of writing, and the four works open up for a reading where the cancer is closely related to the life of the author. The article examines what the different books achieve by writing about cancer experiences in literary genres. A close reading of the books reveals that a literary representation opens up a more nuanced investigation of cancer experiences than what is found in more traditional illness narratives

Sorg i diagnosekulturen. Mellom symptombeskrivelse og litterært uttrykk

Der portugiserne har sin fado og grekerne sine gråtekoner, har vi i dagens Norge få sorgritualer ut over selve begravelsesritualet. Det er som om krav om effektivitet og å være velfungerende, initiativrik og fleksibel utelukker en lengre sørgetid og derfor har fortrengt slike praksiser. I forbindelse med dødsfall og deltagelse i begravelse innen den nærmeste familien har for eksempel en ansatt normalt krav på en kort velferdspermisjon, vanligvis én dag i privat virksomhet, noen flere i kommune og stat.i Vi skal imidlertid ikke så langt tilbake i tid før det var vanlig å bære sørgebind i ett år etter at en nær person var død. Kulturen uttrykker med andre ord forventninger til og mønstre for hvordan den sørgende skal oppføre seg og sorg erfares. I noen sammenhenger er det samsvar mellom de kulturelle føringene og den enkeltes erfaring, i andre foregår det strid og forhandling, noe som gjerne endres over tid. Da kong Olav gikk bort i 1991, strømmet folket spontant til for å tenne levende lys utenfor Slottet. Etter massedrapene på Utøya og i regjeringskvartalet i 2011 ble Nordahl Griegs dikt «Til ungdommen» et samlende uttrykk for den kollektive sorgen. Og da en av langrennsjentene under OL i Sotsji i 2014 mistet broren sin, bar alle landslagsjentene sort sørgebånd. Slike spontane symbolske handlinger kan betraktes som uttrykk for at konvensjoner for hvordan vi uttrykker sorg, nettopp er i endring i dagens Skandinavia. [...] Boken dette kapitlet er hentet fra kan finnes på https://scandinavianacademicpress.no/boker/snart-er-vi-alle-pasiente