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A Sankey diagram showing how many of the 42 participants learned about their miscarriage and the medical decisions to complete their miscarriage. Based on participants' experiences, we abstracted their miscarriage journeys and identifed the resources they needed throughout this time frame (Early Pregnancy Journey (blue), Trigger Event (yellow), and Medical Decision & Grieving (purple)).
Contexts in source publication
Context 1
... looking at the progression of symptoms leading up to miscarriage, we found each miscarriage was unique in the frequency, length, and severity of symptoms. Using the participants' timelines, we constructed an abstracted timeline based on commonalities throughout the timelines using afnity diagramming, as shown in Figure 2. This timeline breaks down into fve stages: Pregnancy Acknowledgment, Early Pregnancy Journey, Trigger Event, Grieving and Medical Decision, and Recovery. ...
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Objective
To investigate the magnetic resonance imaging (MRI) features of women with prior second-trimester pregnancy loss, and to establish a nomogram prediction model for subsequent miscarriage.
Methods
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In an analysis of risk evaluation and mitigation strategies for teratogenic drugs, Ameet Sarpatwari, Beatrice Brown and Aaron Kesselheim explore the variation in primary and secondary prevention measures.
Background
The goal of this study was to investigate which factors, excluding embryo aneuploidies, are associated with miscarriage in patients who have undergone a single euploid blastocyst transfer.
Methods
Retrospective, observational and multicenter study with 2832 patients undergoing preimplantational genetic testing for aneuploidies (PGT-A) d...
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Citations
... A promising trend we saw in the systematic reviews was researchers conducting studies with participants in more than one country. A WEIRD [15] example is from Kresney et al. [14] where they borrowed from the medical informatics community [2] and created a " Table 1" that differentiated the demographics based on two countries -the United States and the United Kingdom. One challenge with these cross-country comparative studies is the granularity is still large; thus, the context and resources available to participants are not as specific. ...
... In an investigation of information seeking behavior during pregnancy, Burleson et al point out the significance of trust for information seeking and suggest healthcare providers who engage with users in online communities should aim to be "approachable, empathetic, and responsive" in order to establish trust with users. Similarly, Kresnye et al [65] investigated information needs during miscarriage and pregnancy loss. They suggest that a "personalized information system should also allow women to connect with the practitioners who provide compassionate services" [65]. ...
... Similarly, Kresnye et al [65] investigated information needs during miscarriage and pregnancy loss. They suggest that a "personalized information system should also allow women to connect with the practitioners who provide compassionate services" [65]. ...
... Social technologies for IMPs should 1) account for a variety of IM practices and business models, including birth work organizations and solo practices, 2) facilitate collaboration amongst community members to enhance IMPs worklife balance and reduce burnouts, 3) promote access to diverse educational resources for IMPs, including apprenticeship opportunities for novice practitioners (also suggested by [109]), 4) reduce barriers for constructing professional online identities by centralizing online profiles and avoiding redundancies, 5) incentivizing community engagement through the promotion and advertisement of job opportunities, 6) distribute the community moderation workload among IMPs, and 7) scaffold trust-building interactions and activities. Additionally, as recommended by Kresnye et al. [65] such technology should support "fusion of data from multiple streams" and support multiple modalities for communication and facilitate the transition from online to face-to-face communication. The design of such systems has the potential to improve the legitimacy of IM practices, enable IMPs to better navigate the intersection of their personal and professional lives, and enhance social support for birthing individuals. ...
The use of integrative medicine (IM) practices during pregnancy are on the rise in the United States and a growing number of individuals seek pregnancy support outside of the conventional medical system every year. There is a variety of integrative medicine providers (IMPs) who work outside the clinical system to fill the gaps in pregnancy support by providing a set of services such as midwifery, doula care, childbirth education, and lactation support. Evidence suggests integrative medicine providers positively impact pregnancy experiences, yet IMPs are often marginalized and excluded from the conventional pregnancy healthcare system. We present results from an ongoing investigation that seeks to understand the roles IMPs play in pregnancy healthcare journeys, and the pregnancy ecology. We interviewed 12 integrative medicine providers to understand their needs and challenges concerning technology, business models, and communication practices. Our findings reflect on a broad range of topics including the intersection of personal and professional journeys, legitimacy within the healthcare system, and the provision of personalized care. We discuss the potential for technology to support IMPs and present implications for the design of future pregnancy support technologies. Improving collaborative care and communication technologies for the IM community has the potential to improve professional experiences and the quality of care provided by IMPs. WARNING: This paper includes detailed personal narratives of individuals' pregnancy healthcare journey including information about, pregnancy, labor, delivery, birth stories, and pregnancy loss.
... In this paper, we focus on the providers of social support, and on the communication between the woman who has miscarried and her network of formal and informal providers. Aspects of our work that are relevant to information repositories are discussed in more detail elsewhere [73]. ...
... Preliminary findings regarding social support were reported in [79]. The method itself is further discussed in [77], and findings from activities that target informational support needs are discussed in [73]. ...
... Most participants wanted more timely information and suggestions on what to do, guidance on what to expect next, stories about other people's experiences, or at least referral to other resources which would help them navigate their miscarriage journey. A more detailed analysis of these informational support needs is given in [73]. Here, we focus on the role of the informal and formal care network in providing this support. ...
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.
... Such work provides insights into the information that specific groups seek [20,21], how privileged and other communities differ in their use of information to inform their care [22], and the benefits and challenges individuals face when finding information on the internet [12,21,23,24]. With respect to pregnancy loss, prior work has examined topics such as social support and self-disclosure at the intersection of pregnancy loss and technology [25][26][27], showing how internet-based spaces are sites for support exchange, sensemaking, and validation or invalidation [28][29][30]. A recent study provided insights into information needs after loss, including general information about loss, counseling resources, others' experiences, and information from providers [28]. ...
... With respect to pregnancy loss, prior work has examined topics such as social support and self-disclosure at the intersection of pregnancy loss and technology [25][26][27], showing how internet-based spaces are sites for support exchange, sensemaking, and validation or invalidation [28][29][30]. A recent study provided insights into information needs after loss, including general information about loss, counseling resources, others' experiences, and information from providers [28]. We built on these works to explore the dimensions of information behavior after pregnancy loss in relation to existing internet-based spaces, the needs these spaces help meet, challenges they pose to individuals enduring a pregnancy loss, and outcomes. ...
... • Information search: the processes of information seeking and information retrieval • Knowledge construction: mental constructs are shaped or designed to function as a basis of thinking • Information production: creating an expression of knowledge, which others can also observe • Applying information: information functions as a resource in some processes • Effects of information: changes brought about by information HCI scholarship's examination of information behavior has mainly centered on the concepts of information need [28] and information search (eg, how social contexts, environments, specific disabilities, or even mood can influence individuals' information-seeking behavior [8][9][10]37,38]). In this study, we recognized the need to go beyond information seeking and consider information use concepts. ...
Background:
Information behavior describes all human behaviors in relation to information. Individuals experiencing disruption or stigma often use internet-based tools and spaces to meet their associated information needs. One such context is pregnancy loss, which, although impactful and common, has been absent from much of feminist and reproductive health and information behavior scholarship. By understanding information behavior after pregnancy loss and accounting for it in designing internet-based information spaces, we can take a meaningful step toward countering the stigma and silence that many who experience such loss endure, facilitate coping, and make space for diverse pregnancy narratives in our society.
Objective:
This study's objective is to provide a characterization of internet-based information behavior after pregnancy loss.
Methods:
We examined internet-based information behavior after pregnancy loss through 9 in-depth interviews with individuals residing in the United States. We analyzed the data by using open and axial coding.
Results:
We identified the following three themes in relation to participants' information behavior in internet-based spaces: needed information types, information-related concerns, and information outcomes. We drew from information behavior frameworks to interpret the processes and concerns described by participants as they moved from recognizing information needs to searching for information and to using information and experiencing outcomes. Specifically, we aligned these themes with information use concepts from the information behavior literature-information search, knowledge construction, information production, information application, and information effects. Participants' main concerns centered on being able to easily find information (ie, searchability), particularly on topics that had already been covered (ie, persistence), and, once found, being able to assess the information for its relevance, helpfulness, and credibility (ie, assessability). We suggest the following design implications that support health information behavior: assessability, persistence, and searchability.
Conclusions:
We examined internet-based information behavior in the context of pregnancy loss, an important yet silenced reproductive health experience. Owing to the prevalence of information seeking during pregnancy, we advocate that generic pregnancy-related information spaces should address the needs related to pregnancy loss that we identified in addition to spaces dedicated to pregnancy loss. Such a shift could not only support those who use these spaces to manage pregnancies and then experience a loss but also help combat the silence and stigma associated with loss and the linear and normative narrative by which pregnancies are often represented.
... In this paper, we focus on the providers of social support, and on the communication between the woman who has miscarried and her network of formal and informal providers. Aspects of our work that are relevant to information repositories are discussed in more detail elsewhere [73]. ...
... Preliminary findings regarding social support were reported in [79]. The method itself is further discussed in [77], and findings from activities that target informational support needs are discussed in [73]. ...
... Most participants wanted more timely information and suggestions on what to do, guidance on what to expect next, stories about other people's experiences, or at least referral to other resources which would help them navigate their miscarriage journey. A more detailed analysis of these informational support needs is given in [73]. Here, we focus on the role of the informal and formal care network in providing this support. ...
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.
Pregnancy is a significant but stressful life transition, requiring effort from multiple stakeholders including expectant parents, family members, and friends to navigate. Existing work has primarily focused on understanding and supporting the technology use of pregnant people, neglecting other stakeholders' needs and participation. We therefore consider how pregnancy tracking apps both improve and interfere with the reconfiguration of social relationships caused by pregnancy, drawing on insights from family sociology to examine how these relationships evolve over pregnancy and the transition to parenthood. We reviewed the features of 20 pregnancy tracking apps, and analyzed 4,709 public reviews of them, finding that stakeholders used apps to bond with one another around the excitement of pregnancy, build a prenatal relationship with the fetus, and co-manage pregnancy-related logistical tasks. We find that not accounting for fetal demographics and users' identities, along with socio-cultural norms around gender and parenting roles, often inhibit these collaborative practices. We therefore suggest designing collaborative pregnancy tracking technology that considers both inclusiveness and specificity regarding stakeholders' different roles and relationships to pregnancy.
Social comparison and social support have implications for individuals' wellbeing, offline and on social media. Perceptions of similarity underlie both social comparison and social support processes, though how comparison and support function in tandem in online spaces, and which aspects of identity and experiential similarity are salient to which comparison and support outcomes, merits investigation. Through interviews with people who have joined or considered joining social media-based support groups following pregnancy loss (N=18), we provide an intracommunity view into social comparison within online support groups. We identify a set of identity and experience attributes that inform perceptions of similarity and difference in these support spaces. We characterize tensions arising from these attributes and propose the preliminary Social Comparison and Social Support in Online Support Groups model to describe interactions between social support and comparison processes within online support groups. We further discuss findings' implications for design, including via introducing the tolerance principle of online health support groups. CAUTION: This paper includes quotes about pregnancy loss.
Navigating conception, pregnancy, and loss is challenging for lesbian, gay, bisexual, transgender, and queer (LGBTQ) people, who experience stigma due to LGBTQ identity, other identities (e.g., loss), and intersections thereof. We conducted interviews with 17 LGBTQ people with recent pregnancy loss experiences. Taking LGBTQ identity and loss as a starting point, we used an intracategorical intersectional lens to uncover the benefits and challenges of LGBTQ-specific and non-LGBTQ-specific pregnancy and loss-related online spaces. Participants used LGBTQ-specific online spaces to enact individual, interpersonal, and collective resilience. However, those with multiple marginalized identities (e.g., people of color and non-partnered individuals), faced barriers in finding support within LGBTQ-specific spaces compared to those holding privileged identities (e.g., White and married). Non-LGBTQ spaces were beneficial for some informational needs, but not community and emotional needs due to pervasive heteronormativity, cisnormativity, and a perceived need to educate. We conceptualize experiences of exclusion as symbolic annihilation and intersectional invisibility, and discuss clinical implications and design directions.
