A space for suffering? : communicating breast cancer in an online self-help context

Final draft post refereeing, reprinted with permission. Published version available at publisher's site: http://dx.doi.org/10.1177/1049732308327076In this article, I explore the communication in an online self-help group for Norwegian women with breast cancer, aiming to add further knowledge to the question of whether the online context functions as a “liberating realm” for alternative discourses about illness. My analysis is conducted within an action oriented frame and is based on participant observation of the online communication and qualitative interviews of women who participated in the group. Based on the analysis, I argue that proposals of a replication of dominating offline discourses in online communication are affirmed. More precisely, the argument is that a “socially desirable” story about the cancer “hero” was further circulated in this online context, and that experiences of resignation and meaninglessness were not woven into the communication. Offering some reflections on this process, I suggest that it has active and voluntary aspects that need attention in further research

Between stigma and pink positivity: women’s perceptions of social interactions during and after breast cancer treatment

This study explores women’s perceptions of social interaction during and after their treatment for early stage breast cancer. Analysis of interviews with 24 women between 6 months-29 years post-diagnosis, reveals that interactions can be influenced by conflicting public discourses surrounding breast cancer. For example, there is the continuing association of cancer with death and the resulting potential for a stigmatised identity (Goffman, 1963). In contrast is the ultra-positive discourse around cancer survivorship, with breast cancer in particular being associated with pink campaigning and a push towards positive thinking. Participants described ‘managing’ conversations during treatment; sometimes playing down their ‘private’ suffering and presenting a positive (‘public’) image rather than risk alienating support. After treatment they were encouraged to move on and get back to ‘normal’. Whilst other breast cancer patients/survivors were often good sources of support, there was also a danger of assuming that all experiences will be the same. We present data to illustrate that women often present ‘public’ accounts which are driven by an expectation of positivity and fear of stigmatization at all stages of breast cancer treatment and beyond

Group interventions to improve health outcomes : a framework for their design and delivery

Peer reviewedPublisher PD

Development of Trust in an Online Breast Cancer Forum: A Qualitative Study

Background: Online health forums provide peer support for a range of medical conditions, including life-threatening and terminal illnesses. Trust is an important component of peer-to-peer support, although relatively little is known about how trust forms within online health forums. Objective: The aim of this paper is to examine how trust develops and influences sharing among users of an online breast cancer forum. Methods: An interpretive qualitative approach was adopted. Data were collected from forum posts from 135 threads on nine boards on the UK charity, Breast Cancer Care (BCC). Semi-structured interviews were conducted with 14 BCC forum users. Both datasets were analysed thematically using Braun and Clarke’s [2006] approach and combined to triangulate analysis. Results: Trust operates in three dimensions, structural, relational and temporal, which intersect with each other and do not operate in isolation. The structural dimension relates to how the affordances and formal rules of the site affected trust. The relational dimension refers to how trust was necessarily experienced in interactions with other forum users: it emerged within relationships and was a social phenomenon. The temporal dimension relates to how trust changed over time and was influenced by the length of time users spent on the forum. Conclusions: Trust is a process that changes over time, and which is influenced by structural features of the forum and informal but collectively understood relational interactions among forum users. The study provides a better understanding of how the intersecting structural, relational and temporal aspects that support the development of trust facilitate sharing in online environments. These findings will help organisations developing online health forums

An exploration of how young people and parents use online support in the context of living with cystic fibrosis

Background: There is increasing recognition of the Internet's potential role in providing information and support for people living with long-term conditions. However, how young people and parents use online forms of self-care support in the context of living with childhood chronic illness has been under-researched. Objective: To explore how online peer support is used by young people and parents to support self-care in relation to cystic fibrosis (CF). Setting and participants: Online forum for young people and parents based on a CF charity website. A total of 279 individuals participated in the forum during the study. Design: An online ethnographical approach, involving observing, downloading and analysing discussion group postings. All postings made over a random 4-month period were included (151 discussion threads). Results: The online setting enabled a physically disconnected group to connect and create a safe space to collectively share experiences and receive support to manage and live with cystic fibrosis. Participants exchanged experientially derived advice and views on how to manage treatments, emotions, relationships, identity and support from services. While parents sought information and support on managing specific therapies/services and ways of maintaining their child's health, the information and support young people desired appeared to be more directed at how to 'fit' CF into their everyday lives. Discussion and conclusions: Online support groups appear to supplement professional support in relation to self-management. They enable young people and parents to share experiences, feelings and strategies for living with long-term conditions with peers and develop the expertise to empower them in interactions with health-care professionals

Cancer patients’ experiences of using an Interactive Health Communication Application (IHCA)

Interactive Health Communication Applications (IHCAs) are increasingly used in health care. Studies document that IHCAs provide patients with knowledge and social support, enhance self- efficacy and can improve behavioural and clinical outcomes. However, research exploring patients’ experiences of using IHCAs has been scarce. The aim of this study was to explore cancer patients’ perspectives and experiences related to the use of an IHCA called WebChoice in their homes. Qualitative interviews were conducted with infrequent, medium and frequent IHCA users—six women and four men with breast and prostate cancer. The interviews were transcribed and analyzed inspired by interactionistic perspectives. We found that some patients’ perceived WebChoice as a “friend,” others as a “stranger.” Access to WebChoice stimulated particularly high frequency users to position themselves as “information seeking agents,” assuming an active patient role. However, to position oneself as an “active patient” was ambiguous and emotional. Feelings of “calmness”, “normalization of symptoms”, feelings of “being part of a community”, feeling “upset” and “vulnerable”, as well as “feeling supported” were identified. Interaction with WebChoice implied for some users an increased focus on illness. Our findings indicate that the interaction between patients and an IHCA such as WebChoice occurs in a variety of ways, some of which are ambivalent or conflicting. Particularly for frequent and medium frequency users, it offers support, but may at the same time reinforce an element of uncertainty in their life. Such insights should be taken into consideration in the future development of IHCAs in healthcare in general and in particular for implementation into patients’ private sphere

The sociology of cancer: a decade of research

Biomedicine is often presented as the driving force behind improvements in cancer care, with genomics the latest innovation poised to change the meaning, diagnosis, treatment, prevention and lived experience of cancer. Reviewing sociological analyses of a diversity of patient and practitioner experiences and accounts of cancer during the last decade (2007–17), we explore the experiences of, approaches to and understandings of cancer in this period. We identify three key areas of focus: (i) cancer patient experiences and identities; (ii) cancer risk and responsibilities and (iii) bioclinical collectives. We explore these sociological studies of societal and biomedical developments and how sociologists have sought to influence developments in cancer identities, care and research. We end by suggesting that we extend our understanding of innovations in the fields of cancer research to take better account of these wider social and cultural innovations, together with patients, activists' and sociologists' contributions therein

The challenge of fitting in: non-participation and withdrawal from an online self-help group for breast cancer patients

Online self-help groups multiply peoples' possibilities to exchange information and social support. Such possibilities are expected to be of crucial value for the 'new' healthcare user. However, similar to experiences from face-to-face based groups, studies of online self-help groups report high drop-out rates. Knowledge about why this happens is scarce. By means of qualitative interviews and participant observation, this article examines non-participation and withdrawal from an online self-help group for Norwegian breast cancer patients. Five conditions are identified as barriers to use; a need to avoid painful details about cancer, not being 'ill enough' to participate, the challenge of establishing a legitimate position in the group, the organisation of everyday life and illness phases that did not motivate for self-help group participation. I suggest that an adoption of the biomedical explanation model represents an important background for this pattern, an argument which contrasts prominent assumptions about the new healthcare user who does not accept the biomedical 'restitution story' in her efforts to make sense of an illness. A further suggestion is that experiences of self-help groups as arenas for successful coping need to be further considered as a barrier to use

Keeping up with the new health care user : the case of online-help groups for women with breast cancer

Målet med denne doktorgradsstudien var å få økt kunnskap om hva slags potensial internettbaserte selvhjelpsgrupper kan ha som rehabiliteringstilbud til kvinner som er behandlet for brystkreft. Som del av studien ble det etablert en selvhjelpsgruppe for brystkreftopererte på Internett. Dette foregikk i regi av Kreftforeningen og Nasjonalt Senter for Telemedisin. Selvhjelpsgruppen var tilgjengelig fra slutten av oktober 2003 til og med februar 2005. 40 brystkreftopererte kvinner i ulik alder og stadium av sykdommen valgte å delta. Data ble samlet inn ved hjelp av spørreskjema, deltakende observasjon av aktiviteten i gruppen og åpne intervjuer av et utvalg deltakere. Det ble skrevet ca 1100 innlegg, og kvinner med spredning framstod som de mest aktive brukerne av tilbudet. Studien bidrar til å bekrefte at deltakelse i en selvhjelpsgruppe på Internett kan ha stor betydning for kvinner som er behandlet for brystkreft. Materialet reiser imidlertid også kritiske spørsmål til hvilke forventninger vi kan ha til slike tilbud. Et hovedargument i denne studien er at arbeidet med å mestre det livstruende aspektet ved kreft bidro til at gruppen ikke ble ”utnyttet” som antatt i de mest radikale anslagene og at mange valgte å forlate gruppen. Et videre argument et at kvinner med brystkreft ofte har omfattende omsorgsoppgaver og er yrkeskvinner, og at ønsket om å fungere i disse rollene kan bli begrensende for deres engasjement i selvhjelpsgrupper. I tillegg til å rette et kritisk søkelys på antatte endringer i pasientrollen, tilsier erfaringene fra denne studien at det også er nødvendig å ha fokus på organisering av internettbaserte selvhjelpsgrupper i det videre arbeidet med å kartlegge potensialet i disse. For eksempel reiser studien spørsmål om det er nødvendig å definere målgruppen for tilbudet klarere enn det som ble gjort her. Et videre spørsmål er om det også bør inkluderes en mer aktiv ledelse av slike grupper enn det vi la opp til i denne studien