Gestational diabetes mellitus, healthcare and self-organised online support communities: a mixed methods investigation exploring women’s experiences

<p dir="ltr">Background: Gestational diabetes mellitus (GDM) is currently the most common medical complication of pregnancy, with prevalence rising worldwide, yet there has been limited examination of patient use of social media to cope with the demands of the condition. This thesis examines women’s experiences of GDM healthcare and self-organised GDM online support communities on Facebook. Rationale: The increased prevalence of GDM has significant implications for the Australian healthcare system. At any moment, women are logging onto Facebook and interacting in GDM online support communities, yet relatively little is known about what is posted and expressed in such groups. Understanding how these self-organised communities inform, support and empower users is valuable given women look to the internet and social media, regardless of formal advice, to improve self-management and seek out informational and emotional support. Objective: This thesis uses mixed methods to investigate women's experiences of GDM healthcare and GDM online communities to discover the nature of the relationship between the healthcare system and self-organised online communities. Research articles: This thesis contains five articles, alongside autoethnographic sections that include detailed reflections on the researcher's 'lived' experience of GDM and how her positionality informed the program of research. Article I is a scoping review of the experiences of GDM healthcare internationally, and Articles II-V are empirical studies. Article II examines the contents of GDM online communities on Facebook focusing on prevalent topics and users' help-seeking styles; Article III explores women’s motivation to join such groups and the perceived value and benefits of involvement; Article IV analyses the characteristics of members of GDM communities on Facebook, exploring the uptake and value of the internet and online support communities for GDM, and how participation contributes to empowering experiences of healthcare; and Article V provides in-depth analysis of participants’ accounts of GDM online communities to increase understanding of how peer support and discussion is enabled and enacted. Methods: This mixed methods investigation was underpinned by the research paradigm of pragmatism, and involved a content analysis of Facebook posts (n=388), quantitative and qualitative analysis of responses from a web-based cross-sectional survey (n=340), and a thematic analysis of semi-structured phone interviews (n=28). Participants were recruited from two peer-led closed GDM Facebook groups in Australia, self-organised independently by members of the public. Findings: The findings revealed reasons women joined GDM online communities on Facebook and the perceived value they gained for GDM self-management through discussions on quotidian topics of concern and receiving support. Other benefits included the sharing and perusal of lived experiences and the feeling belonging to a community. Informational and emotional support needs in relation to GDM were somewhat met by peer-led online communities and contributed to the ability to self-advocate and a greater sense of empowerment. Participants’ accounts suggested GDM online communities serve as an adjunct to formal healthcare, augmenting clinic-based appointments and clinical management of GDM. It was also indicated by some that information found online and in such communications are discussed with healthcare providers. Contributions of the thesis: The thesis provides insight into a researcher's experiences of maternity and GDM healthcare, which informs the program of research into women's experiences of both GDM healthcare and GDM online support communities. Through self-organisation online, women collaboratively navigate the challenges of self-management and healthcare. As these findings show how GDM online communities can complement formal health care and help address unmet needs, an opportunity exists for healthcare providers to invest in formal outreach into GDM online support communities on Facebook.</p>