Researchers use Asynchronous Remote Communities (ARC) to reach out to target populations who may find it hard to meet in person, or make time for telephone interviews. So far, ARC studies have been conducted using closed and secure groups on Facebook, because most participants are active members of this social network. However, it is not clear how participants' Facebook usage might affect their engagement with an ARC study. In this paper, we report a secondary analysis of a recent ARC study of women who had experienced at least one miscarriage that focused on their information and social support needs. We find participants tend to be comfortable with seeking emotional support on Facebook, and even those who say they rarely post to Facebook engage with most group activities. We discuss implications for choosing platforms for ARC studies.

As research methods evolve to provide a voice to understudied, distributed communities, we explore our experiences running and analyzing Asynchronous Remote Communities (ARC) studies. Our experiences stem from four separate Facebook-based ARC studies with people who experience: rare disease, pregnancy, miscarriage, or HIV. We delve into these studies' methods, and present updated guidelines focused on improved study design, data collection, and analysis plans for ARC studies.

Background Lack of social support during and after miscarriage can greatly affect mental wellbeing. With miscarriages being a common experience, there remains a discrepancy in the social support received after a pregnancy is lost. Method 42 people who had experienced at least one miscarriage took part in an Asynchronous Remote Community (ARC) study. The study involved 16 activities (discussions, creative tasks, and surveys) in two closed, secret Facebook groups over eight weeks. Descriptive statistics were used to analyse quantitative data, and content analysis was used for qualitative data. Results There were two main miscarriage care networks, formal (health care providers) and informal (friends, family, work colleagues). The formal care network was the most trusted informational support source, while the informal care network was the main source of tangible support. However, often, participants’ care networks were unable to provide sufficient informational, emotional, esteem, and network support. Peers who also had experienced miscarriage played a crucial role in addressing these gaps in social support. Technology use varied greatly, with smartphone use as the only common denominator. While there was a range of online support sources, participants tended to focus on only a few, and there was no single common preferred source. Discussion We propose a Miscarriage Circle of Care Model (MCCM), with peer advisors playing a central role in improving communication channels and social support provision. We show how the MCCM can be used to identify gaps in service provision and opportunities where technology can be leveraged to fill those gaps.

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Background: Lack of social support during and after miscarriage can greatly affect mental wellbeing. With miscarriages being a common experience, there remains a discrepancy in the social support received after a pregnancy is lost. Method: 42 people who had experienced at least one miscarriage took part in an Asynchronous Remote Community (ARC) study. The study involved 16 activities (discussions, creative tasks, and surveys) in two closed, secret Facebook groups over eight weeks. Descriptive statistics were used to analyse quantitative data, and content analysis was used for qualitative data. Results: There were two main miscarriage care networks, formal (health care providers) and informal (friends, family, work colleagues). The formal care network was the most trusted informational support source, while the informal care network was the main source of tangible support. However, often, participants’ care networks were unable to provide sufficient informational, emotional, esteem, and network support. Peers who also had experienced miscarriage played a crucial role in addressing these gaps in social support. Technology use varied greatly, with smartphone use as the only common denominator. While there was a range of online support sources, participants tended to focus on only a few, and there was no single common preferred source.Discussion: We propose a Miscarriage Circle of Care Model (MCCM), with peer advisors playing a central role in improving communication channels and social support provision. We show how the MCCM can be used to identify gaps in service provision and opportunities where technology can be leveraged to fill those gaps.