Together for change: investigating a socio-technical system approach for supporting miscarriage
Alqassim, Mona Yahya M
Globally, miscarriage is affecting a substantial number of women: about 1 in 5 women who know they are pregnant miscarry. Importantly, miscarriage can be profoundly distressing, and lack of social support during and after a miscarriage can greatly affect women’s wellbeing. Unfortunately, miscarriage is not a commonly discussed topic, despite the significant number of miscarriages occurring. As a result of the lack of discussion around the subject of miscarriage, it continues to be stigmatised and misunderstood. Consequently, there is inadequate communication between women who have experienced miscarriage and care networks when communicating their social support needs. This thesis investigates how technology can be meaningfully leveraged to enhance those communications. As a theoretical framework, the thesis author uses the Circles of Care Model, which has previously successfully been used to understand the complex context of caring for people with chronic illness. The research process was strongly participatory, inspired by principles of Community-Based Participatory Research. The main contributions of this thesis are: (a) an in-depth and rich holistic contextual understanding of the social support needs of women who have miscarried, describing in-depth their practices and use of technology (b) extending the Circles of Care Model approach to designing a socio-technical system for miscarriage care (c) proposing empirical design goals for socio-technical systems for miscarriage care that are grounded in mixed methods research with women from different cultures and different health care systems. In collaboration with ProHealth Lab, University of Indiana, Bloomington, United States, we began with an exploratory Asynchronous Remote Communities (ARC) study to investigate the breadth of miscarriage experiences, the support needs that arise, the people who can help, and the potential scope for technology to facilitate the support needed. The study involved 16 activities (discussions, creative tasks, and surveys) posted in two closed, secret Facebook groups over eight weeks. Women who have miscarried face barriers to receiving appropriate social support when communicating with their care network. Since miscarriage still carries a considerable stigma, women hear unwanted responses and belittlement of the loss, which made them more hesitant to reach out. They often felt unable to discuss their feelings and thoughts openly, as they feared a lack of empathy. Without having a guiding hand, women who have miscarried feel alone in this experience. They live experience that no one has prepared them to, very few people understand and sometimes is challenging to get support. This left many overwhelmed with complex social support needs while in a raw emotional state, and often with insufficient informational, emotional, esteem and network support at the time. While women experiencing a miscarriage utilise various technology channels for seeking support when other options fail them, each woman only focuses on a few online streams. We developed the Miscarriage Circle of Care Model (MCCM) to mapping the formal, informal care networks, and their respective roles in providing social support. Our findings highlight the importance of integrating the Peer Advisor support to provide holistic support for a woman experiencing a miscarriage. Next, the thesis author carried out five sets of 1:1 co-design workshops with women who have miscarried to investigate how technology might help address their unmet support needs, given the map of formal and informal care networks we developed. The workshops were structured around a journey mapping exercise. The thesis author also used card sorting to explore mental models of miscarriage support. The thesis author collected data both from women who had miscarried and those who had not experienced miscarriage themselves but felt a strong connection to the topic. We involve women who have not experience a miscarriage in the process to explore the different clustering behaviour between women with experience of miscarriage and those without experience, which in turn, help to understand how the experience of miscarriage changes the perception of support. The thesis author distilled the findings into actionable design goals, which were then instantiated in a wireframe prototype of the socio-technical system solution, which was designed to be able to fit into a pregnancy app. The thesis author evaluated the prototype in another five series of 1:1 workshops using techniques from usability testing, such as task analysis, and methods from service design, such as love letters / break up letters. Overall, women considered the prototype to be useful and acceptable, with suggestions for improvements. The thesis author concludes with a critical reflection of the process and findings and provides a conclusive description and suggestions for implementing them in practice. Through reflection on the experiences in conducting research for this thesis, including the difficulties we faced and decisions we made, we derive insights into the role of design, power relations in the community and research in a sensitive area. We conclude with a discussion of limitations and discuss how the MCCM developed in this thesis might be implemented within existing miscarriage care in the United States and United Kingdom healthcare systems.