Understanding Miscarriage Support through Social Media Focus Groups


We are a team of researchers: Mrs Mona Alqassim, PhD student at the School of Informatics, University of Edinburgh, and her supervisors Dr Maria Wolters and Prof Helen Pain. In our research, we want to design solutions for supporting women who are experiencing or have experienced a miscarriage. In particular, we are interested in meaningful ways to use technology (apps, social media, etc.) to do so. Together with women who have experience of miscarriage, we want to leverage technology to make access to social support.

In collaboration with the School of Computer Science and Informatics at Indiana University in the United States, we attempted to engage the community of women who have miscarried in the early and initial stage of the research. We invited them to define the problems together and develop an understanding of their experience, needs and requirements using “The Asynchronous Remote Community” (ARC).  ARC employs a social media platform to conduct research and get a clear picture and better understanding and clarify what the shape of the solution might be for certain problem. The focus of this ARC study was to determine women who have miscarried’s information and social support needs and their technology usage before, during, and after miscarriage. We recruited participants from the United Kingdom (UK) and the United States (US), two countries that share a common language, but have vastly different health care systems and approaches to perinatal care. Perinatal care in the US is led by obstetricians, while care in the UK is led by midwives and family doctors, with obstetricians only involved in case of complications.

Forty-four women who had experienced at least one miscarriage were recruited and assigned to two secure Facebook groups over eight weeks.  The ARC study consisted of 16 activities included discussions, creative tasks, and surveys.

From the responses of both groups, we find that participants have different needs and those needs can be varied with each miscarriage. So, in each miscarriage, they needed different things and they reacted differently too. We identified two major miscarriage care networks, formal (health care providers) and informal (friends, family, support groups). Technology use varied greatly, with smartphone use as the only common denominator. The main source of emotional, esteem, network, and tangible support was the informal care network, especially partners and people sharing their own miscarriage experience (peers). The formal care network was the most trusted informational support source. Many participants reported that their care networks were unable to provide sufficient emotional, esteem, network, and informational support. We identify three opportunities for eHealth: more timely access to informational support, better access to network support, and education for the informal care network.

We provide more details and preliminary findings of our ARC study here.