A web-based analysis has the advantage of capturing the views of a large and diverse population of women with a shared condition. Many of the accounts on the web forum are deeply personal, detailed, and moving. Women have articulated their experience both for themselves and for other site users. Dialogues frequently develop and many women express feelings of relief at finding people with similar experiences who understand and sympathise with their condition. The level of disclosure found on the site concurs with previous findings that the use of an internet forum has a disinhibiting effect and encourages a degree of openness and honesty that may be difficult to replicate in face-to-face discussion.
RUTIs are a relatively common but often poorly managed condition that can cause distressing local and systemic symptoms. Although frequently described in medical parlance as being a minor, self-limiting condition, for many women RUTIs cause severe physical discomfort and are associated with significant psychological distress, damaged relationships, and an inability to work or socialise that seriously undermine the quality of their lives. These reports are consistent with previous research describing wide ranging and frequently atypical symptoms of acute episodes of cystitis[10,11] that can adversely affect psychological wellbeing, social activity, and quality of life.[9,11]
Site-users' experiences of medical treatments are complex and diverse. Some women report frustration at what they regard as dismissive, patronising and uncaring treatment and express dissatisfaction with the side effects and short-term benefits of antibiotics. As a consequence Complementary therapies are widely used by women on the forum as primary or adjuvant treatments to alleviate symptoms and to address the perceived deeper immunological or emotional causes of these infections.
However women also report encountering excellent physicians and receiving sustained benefits from their treatment. Although the qualities of good doctoring may appear self-evident it is still both useful and salutary to have these explicitly identified by women who are clearly immensely relieved to be taken seriously, listened to, and cared for by well-informed physicians.
These contrasting findings support a recent analysis of older women's reports of receiving a similar mixture of adequate and inadequate conventional treatment for UTIs. In our account the medium of a web forum allows a particularly vivid articulation of the frustration over poor care and ineffective treatment. In part this may be a result of the observed phenomena that people interviewed via the Internet find it easier to register protest in the absence of a face-to-face interviewer. It may also be due to the constant availability of a web forum where users can post comments in 'real-time', such as on their return from a difficult GP consultation, or in the middle of the night when they are in pain and unable to sleep. These immediate and often quite raw reports are captured 'on line' and are given extra poignancy and significance as they become part of a narrative sequence lasting over several months and even years.
There are several limitations to this analysis. Participation in the forum was contingent upon having access to online computers or phones and possessing the skills, confidence, and desire to engage with online facilities. Women using the site were a self-selected sample who became actively involved with the COBF often because their condition was not well managed. This may mean that they had more extreme views and more difficult experiences than other women with RUTIs who did not post on the COBF forum. Therefore reported findings should only be very cautiously extended to the wider population of women suffering from RUTIs. There are also limitations in the data itself. Conducting a retrospective text-based analysis means that it has not been possible to ask participants to expand on or clarify their postings. Face-to-face interviews would have permitted a more detailed, responsive, and nuanced investigation of a woman's experience. Also the emphasis on this study has been on the content generally with a particular focus on a few specific themes. This was consistent with the study aims, to explore women's experiences of and perspectives on RUTIs, as represented on a major web-based forum. Analyses of the development of website narratives or of the diverse functions of the site for its users, for example, have not been conducted, but would be interesting areas for future investigation. Considerable more work needs to be done into how the medium of a web forum influences the way in which people can articulate and represent their life experiences.
BMC Fam Pract. 2014;15(162) © 2014 BioMed Central, Ltd.
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