Narrated Experiences of Medically Assisted Reproduction in Hungary - Infertility from a Multimethod Perspective

Kivonat, rövid leírás

The doctoral dissertation is focusing on the biographical disruptions and lived experiences of female patients using medically assisted reproductive technologies in Hungary. In general, the aim of the thesis research is to explore patients’ constructed narratives about infertility and reproduction technologies used in treatment. Further goal is to understand the role of patients’ accumulated knowledge in the form of ‘lay expertise’ has affected interactions with medical professionals and their perceptions of the doctor-patient relationship. Moreover, the inquiry aspired to uncover how the gendered reproductive responsibility of pronatalist Hungary influence participating women’s actualities and experiences. Four research questions were formulated for the investigation, the main findings detailed in the last section of the abstract. The thesis draws on the combination of four distinct theoretical fields. The four approaches the thesis gains inspiration from are the following: (1) science and technology studies (STS) to explore the connection between lay public and complex technologies; (2) medical sociology to trace what factors contribute to the new type of doctor-patient relationship apparent today; (3) gender role theory to engage the fact of gendered reproductive responsibility and genetic burden fuelled by the pronatalist rhetoric and social policy of Hungary; (4) the unique position and effect of online science communication on the aforementioned phenomena and mechanisms. To achieve its goals the exploratory thesis research utilizes a multimethod qualitative approach, relying on both active and passive research methodologies. The methodological design of the project connects online and offline data, its main prong being a netnography of online traces about infertility and medically assisted reproduction appearing in Hungarian public online discussion communities. The other, active strand of inquiry involved 18 qualitative patient, and 12 semi-structured expert interviews, which were used as complementary methodology. Rigorous qualitative thematic analysis guided by the six-step framework and guidelines presented by Braun and Clarke (2006) was applied to all data types. The main findings of the thesis research can be summarized as follows: • • Online conversation can be structured along the lines of four distinct patient pathways, or thirteen main identified themes about infertility and medically assisted reproduction. • • Participants of these online discussion communities are female, and group cohesion can be observed in both the topics and a special patient language used, which aims to soften textbook medical terminology. • Both in the online trace data and the qualitative interviews evidence was found that the patients were not only knowledgeable but have accumulated knowledge that fit the definition of lay expertise. • • The lay expert patients often utilized their knowledge to confront medical professionals, lay expert peers were asked to validate professional diagnoses and recommendations. • • The tensions observed in the doctor-patient relationship can partly be attributed to this accumulation of lay, contextual expertise, but also to the dysfunctions experienced in the public and private branches of the Hungarian health care system. • • Limited trust towards medical professionals was also observed. Patients attributed this declining trust both to the perceived lack of expertise of the professionals and from a behavioural focus, their perceived bad intentions. This observed decline in authority provides further evidence of the shift in the dyad’s interactional change, and orientation towards a form that can be grasped by modern doctor-patient relationship models and not the traditional Parsonian functionalist role-based modelling. • • Women assume most of the genetic responsibility during medically assisted reproduction. Underlying this is partially ideological, embedded in the pronatalist and traditionalist Hungarian society, and partially practical with women having more access to the information flow from professionals and the fertility institutions. • • Contradicting international research findings, while male partners proved to be supportive during the treatment process, they did not take on the role of information seekers but appeared to stay more passive.