Just a “Click” away from evidence-based online breast cancer information, advice and support provided by a specialist nurse: An ethnonetnographic study

Breast cancer has had, and will continue to have, a devastating impact on the lives of many Australian women, their families, friends and the wider community. The concomitant treatment of this disease places a considerable burden on the health care system and the supporters of the person diagnosed with this disease. While there are many government and non-government organisations that provide treatment and support services for the person with breast cancer, these services are usually provided in person either in the home or at the organisation’s offices. This study extended the information advice and support aspects of these services to the online or Internet based realm via the design and development of a breast cancer focused online support community www.breastcancerclick.com.au and explored the role of the expert nurse through the employment of a specialist breast care nurse as a member, moderator and health professional within this online community. This study used an ethnonetnographic approach, including online (on the Internet) and offline (face-to-face) methods, to explore the role of the specialist breast care nurse within the online, breast cancer support, community. The study was comprised of three phases, Phase One, the offline and online identification of the information, advice and support needs of Western Australian women with breast cancer and their Internet use; development of a website designed to meet those needs and to foster the development of an online support community; Phase Two, the employment and introduction of a specialist breast care nurse as a member and provider of evidence-based information, advice and support for online community members; Phase Three, the online and offline collection of data relevant to the role of the specialist breast care nurse within the online support community. The identification of the expert nurse as a linchpin in the patient’s care and communication has implications for future nursing practice and curricula as well as consumers of health care. Recommendations arose from the findings in relation to further research, nursing practice, education these recommendations indicate an innovative extension to expert nursing practice and together the elementary guidelines for health professional when developing an illness specific online support community foreshadow a future direction for nursing, in line with the digital age

Self-revelation in an online health community: Exploring issues around co-presence for vulnerable members

Problem: This paper addresses the implications of working with vulnerable groups in the context of an online health community when members move from co-presence online to co-presence offline. Theoretical Approach: The case study presented in this paper challenges the expectation that self-revelations are usually more common in online environments because of the anonymity and comfort experienced there. Methodology: Taking as its example the events in a research project designed to investigate the relative features of online communities and social network sites by using a ‘netnographic’ approach, this paper examines the introduction of live chat sessions with a view to building social and emotional involvement in community members who had been, to that point, somewhat disengaged. Findings: On the fourth live chat, shortly before Christmas, one community member suggested that they meet for a meal, effectively moving the co-presence from the online community into the offline world. This duly occurred the following week, but the situation did not develop as the research team members had envisioned and instead they found themselves dealing with a member who, in person, was revealed to be feeling suicidal. Conclusion: Addressing the case study in terms of the implications of co-presence and self-revelation in research settings, this paper goes on to describe the changes in policy and process instigated by the support organisation to prepare for other possible events of this nature

Embodying knowledge of breast cancer in a disembodied community?

Few life experiences have a greater impact upon the sense of self than the diagnosis of a life-challenging illness. Breast cancer is such an illness, and the sudden transition from \u27well\u27 to \u27ill\u27 is unsettling for a person\u27s sense of knowing who they are in \u27their\u27 own body. What you know about your body, what others know about your body and what your biology knows about your body become suddenly problematic. This paper addresses what people know about their bodies before and after experiencing a breast cancer diagnosis by examining relevant theory and empirical data drawn from an online community for people with breast cancer, their families and supporters. In the Breast Cancer Click (BCC) online community members are encouraged to blog their breast cancer journey, engage in discussion forums, use a private messaging function to talk in real-time with each other and a breast care nurse, and to participate in live group chat. The records of all these activities have been used in a netnographic study which aims to examine the efficacy of this mutual support community. In this paper we present some of the material which has been created in the community’s activities to consider the embodied experience of breast cancer. Evidence from online community members is addressed to consider what a western cultural experience of breast cancer as captured by a disembodied online community can tell us about embodiment and embodied knowledge

Creativity in an online community as a response to the chaos of a breast cancer diagnosis

No abstract available

The specialist breast care nurse\u27s role in the indentification and minimisation of distress in a members\u27 only, breast cancer focused online support community

Objectives: To show how a specialist breast care nurse (SBCN) can use the distress thermometer to determine an online community member’s distress level and then use the information in their posts and blogs to identify the cause(s) and deal with them appropriately. To highlight the use of a structured written emotional expression (SWEE) format online, as a way of minimising distress. Method: A survey of online community members together with analysis of the content of members’ posts and blogs to determine whether their distress thermometer score had decreased since the SBCN had been online to deal with member distress. Results: The survey showed that four of the survey participants who completed the survey N=30 had completed a SWEE, been personal messaged by the SBCN about their distress thermometer score and declared that the information and advice they received had been instrumental in decreasing their distress score. It was not possible to identify whether a SWEE made any difference to the Distress Score. Conclusion : The SBCN can use the Distress Thermometer tool online to screen for member distress and deal with this distress through information, advice and support or referral to another health professional. A DT scores should be repeated before and after each of the breast cancer treatment stages so that appropriate interventions can be put in place to minimise or prevent the member’s distress. Specialist nurses in other specialised nursing areas can use the distress thermometer to measure and address the problems/issues causing support community members distress. That the content of a SWEE is one way in which members can document and vent about the problems causing their distress and this information can be used by the nurse to put in place appropriate solution or provide advice and support

Munchausen by Internet and nursing practice : An ethnonetnographic case study

This paper used Feldman’s clues to factitious illness behavior on the Internet (FIBI), to determine whether the online behaviour of one member of an online breast cancer support community www. breastcancerclick.com , moderated by a specialist breast cancer nurse (SBCN), could be Munchausen by Internet (MBI) and why identification of this behaviour is important for online nursing practice. This was a focused ethnonetnographic and qualitative research study whereby the online behaviour of one member was observed and compared with Feldman’s clues to factitious behaviour on the Internet. The online data showed that nine out of ten of Feldman’s clues were applicable to the member’s behavior in the Click online community. The relevance of these findings are discussed in relation to the effects this behaviour can have on other community members, the attendant legal ramifications and the necessity for nurses and other health professionals, who are employed or who participate in online support communities, to be aware of this behaviour and how to recognize it

Building An Online Community In The Context Of An Existing Social Network Site

This paper compares the characteristics of the Purple Boot Brigade, a social network for supporters of Breast Cancer Care WA, with the characteristics of Breast Cancer Click, an online community. Whereas online communities might be conceptualised as relatively flat structures, in which membership is developed as a result of time spent online and in communication with fellow members, a social network can be seen as hierarchical, where members invite their face-to face colleagues and friends to join with them in online activities. In the case of this research it was hoped that the two environments would offer different benefits and exhibit complementary and mutually-supportive characteristics. The Purple Boot Brigade is a well-established social network site which espouses consciousness-raising, education and sponsorship to develop knowledge and awareness of breast cancer in its many forms. However, this social network had a number of drawbacks when it came to supporting people with breast cancer. Hence it was decided to establish Breast Cancer Click as an online community where people with breast cancer could seek support. This paper interrogates the contemporary challenges of building an online community, even with the benefit of a pre-existing social network site