Digital Experiences – Patient’s Patchwork Knowledge in Health-Related Online Forums

Abstract

Patients undergoing infertility treatment are constantly confronted with complex decisions requiring scientific knowledge. Referring to scientific knowledge, which often is tentative and conflicting, however, frequently impedes the patients’ decision-making. Against this background, we analyse how infertility patients perceive and utilise other patients’ knowledge which was communicated and gained in infertility forums. A guiding premise of this article is that the characteristics of digital media help to bring scientific knowledge to a conclusion and, in this way, to translate it into an everyday decision-relevant resource. In a multimethod design, we carried out qualitative telephone interviews with 32 people with an unfulfilled desire to have children, a standardised online survey of 1,216 users of infertility forums as well as a standardised content analysis of three German-language infertility forums. Our study shows that patients’ online forums constitute a place where scientific knowledge and lived experiences intertwine. In order to increase their chances of a pregnancy, infertility patients using online forums interweave scientific knowledge and personal experiences, go back and forth in this process, and form patchwork knowledge enabling them to go on in decisions involving uncertainty. Scientific Knowledge in Everyday Life Nowadays, scientific knowledge is increasingly considered as the guiding principle of almost every sphere of life (Collins 2014, Nowotny 2016, Weingart 2013). Unlike religious or traditional knowledge, however, scientific knowledge is preliminary, controversial and therefore presents no simple certainty. Thus, if everyday life is based upon scientific knowledge, the opportunities of choice proliferate: Life, death, sex, religion, marriage, parenthood – everything becomes decidable, in a way has to be decided (Beck/Beck-Gernsheim 1994:16 f.). Knowledge societies then construct a “social world, in which things are more and more ‘made’ to happen” (Stehr 2001 b:10). This holds especially true for human reproduction. Due to new medical possibilities, such as birth control and reproductive medicine, as well as the societal acceptance of new forms of family, reproductive choices are constantly and significantly rising (McNeil 1990:11). Particularly assisted reproductive technologies, which have been developed over the last four decades, have pulled human reproduction into the scientific domain. Apart from adopting, fostering or changing partners, men and women seeking to fulfill their desire to have a child can pursue different ways of reproductive medical treatment. Even if Assisted Reproductive Technologies are widespread today, it is still the case that “fertility (...) is both unpredictable and 1 Soziale Welt, Sonderband 23 (2020), 198 – 209 https://doi.org/10.5771/9783845295008-198, am 12.08.2021, 13:18:27 Open Access http://www.nomos-elibrary.de/agb prone to turbulence” (Nowotny 2016:91). This means that scientific knowledge on infertility treatments is tentative, conflicting and complex, too. However, at the same time, laypeople are chiefly interested in the practical utility and applicability of their knowledge. For patients, scientific knowledge first and foremost has to be sufficient to satisfy the interests of everyday life. From their perspective, the nature of scientific knowledge diminishes its relevance as a resource in everyday life, as it is not possible to make a clear decision on a tentative and conflicting knowledge base. Thus, the interpretations of scientific knowledge “must come to a ‘conclusion’” (Stehr 2001 a: 90) – only then does scientific knowledge have any practical value in patients’ decision-making. Against this background, we analyse how infertility patients perceive and utilise other patients’ knowledge which was communicated and gained in infertility forums. A guiding premise of this article is that the characteristics of digital media help to bring scientific knowledge to a conclusion and, in this way, to translate it into an everyday decision-relevant resource. Internet, Infertility and Experiential Knowledge A meta study shows that in case of infertility, the Internet serves as a central, if not the most important source of information (Zillien et al. 2011). Besides information needs, the main reasons especially for the use of social media in case of infertility are needs for emotional, social and psychological support and for self-guided improvement (Epstein et al. 2002; Haagen et al. 2003; Kahlor/Mackert 2009; Malik 2010; Malik/Coulson 2008; Rawal/Haddad 2005; Weissman et al. 2000; Wingert et al. 2005). A qualitative study by Hinton et al. (2010) emphasises that the Internet is modifying the handling of infertility by giving sufferers targeted access to the experiences of others facing the same problem (Hinton et al. 2010: 440). Furthermore, Malik (2010) explicates that infertility forums enabled patients “to understand exactly what it was like to undergo treatment from those who had first-hand experience of infertility” (Malik 2010: 308). Analyses of the self-help movement have already illustrated that learning about other patients’ experiences affects health-related decisions, perceptions and actions (Borkman 1976). In general, there is a growing body of literature on the empirical examination of patients’ experiences (e.g. Akrich 2010; Brown 2004; Pols 2014; Rabeharisoa et al. 2014; Whelan 2007; Ziebland/Wyke 2012). These studies argue that patients’ experiences can provide knowledge which is valued by itself. However, while these empirical investigations put a focus on political activities of patient communities and analyse how groups concerned engage in science to change their situation (e.g. Akrich 2010, Brown 2004, Rabeharisoa et al. 2014), the study at hand adopts a mainly epistemological point of view. Whelan (2007), who analyses knowledge processes in (offline) groups of endometriosis patients, takes this perspective, too. Endometriosis is a hormonal and 2 Digital Experiences – Patient’s Patchwork Knowledge in Health-Related Online Forums 199 https://doi.org/10.5771/9783845295008-198, am 12.08.2021, 13:18:27 Open Access http://www.nomos-elibrary.de/agb immune system disease with pelvic pain as the main but not universal symptom. For this enigmatic disease, there is often no correlation between the severity of the pain about which patients complain and the observable symptoms, so that the perceptions of patients and physicians may diverge. Physicians often dismiss the endometriosis patients’ narrations as hypochondriacal descriptions of menstrual problems (Whelan 2007: 957). Against this background, patients try to handle the uncertainty of medical knowledge by relating it to their experience: “‘Experience’, then, becomes the arbiter of medical truth” (Whelan 2007: 962). On the basis of their experiential knowledge, endometriosis patients thus collaboratively define “what counts as ‘good knowledge’ in order to challenge medical authority” (Whelan 2007: 959). Experiential patient knowledge, then, is mainly seen as corrective of expert knowledge. In contrast, Pols (2014) illustrates for a community of patients suffering from lung emphysema – a severe lung disease – that their knowledge does not principally aim at a correction of physician knowledge, as lung emphysema is a widely researched, incurable disease that is usually cared for adequately (Pols 2014: 76). In this case, experiential patient knowledge consequently rather aims at managing everyday life with the illness: Patients for instance (collaboratively) learn how to deal with frequent breathlessness. This experiential knowledge is not positioned against but conglomerated with expert knowledge and presents as such “a profound mixture of homegrown concerns and values, with elements of medical knowledge and technology” (Pols 2014: 76). Infertility patients do not start their medical treatment because of acute physical pain, nor are they fatally ill. They rather, in the beginning, define themselves as patients in order to find a medicalised solution for an unfulfilled wish to have children. Infertility is then defined as a medical problem and as such can be defined as a socially constructed process; thereby, patients come to find reasonable ways of handling their problem of infertility (Greil et al. 2010: 141). This medicalisation of infertility can be seen as typical of a knowledge society in which infertility is no longer a matter of fate. In a knowledge society, it is possible “to ‘fix’ the infertility and produce a pregnancy” (Becker/Nachtigall 1992: 460) through medical means. As a consequence, at some stage in their course of treatment, infertility patients are confronted with complex decisions requiring scientific knowledge: They have to decide, for example, how they are going to approach infertility treatment, whether they are willing to accept specific stresses, and whether they want to undergo another treatment option after unsuccessful therapy. Besides these decisions, in infertility treatment, there is often no clear-cut indication for or against a medical intervention, so that there is ample scope for different opinions on treatment possibilities (Rauprich et al. 2011). Thus, infertility patients have to handle tentative and conflicting scientific knowledge, they have to learn to cope with uncertainty (Nowotny 2016:xiii). 200 Nicole Zillien https://doi.org/10.5771/9783845295008-198, am 12.08.2021, 13:18:27 Open Access http://www.nomos-elibrary.de/agb In the following, we start from the premise that emotions, personal stories and subjective judgements gain relevance in social media. Our thesis is that the architecture, the material composition of social media virtually encourages personal exchange: As Papacharissi argues, “[m]edia technologies afford affect” (2015: 20). Accordingly, a revaluation of subjective assessments in public exchanges can be observed; in large part, t