Reducing the Stigma of Sexual and Reproductive Health Care Through Supportive and Protected Online Communities

Abstract

In many cultures where discussions and care-seeking for sexual and reproductive health (SRH) are stigmatized, unmarried women often suffer silently, facing risks of sexually transmitted infections and gynecological complications. South Korea exemplifies this challenge, with SRH topics remaining stigmatized, potentially contributing to Korean women’s high incidence rates of cervical cancer. To address this problem, we designed and studied a protected online community for unmarried Korean women with 9 weeks of guided activities relating to SRH. We describe how these activities helped participants reflect on and discuss the typically taboo topics surrounding SRH. Results indicate that the online community effectively supported participants in initiating additional offline conversations about SRH with more people, and even encouraged some women to seek clinical care. This work sheds light on the potential of supportive and protective online communities to facilitate SRH, offering newfound options for supporting women in cultures where such care is stigmatized.

Introduction

Many unmarried women suffer silently, rather than seek care for stigmatized sexual and reproductive health (SRH)^1,2, particularly in many Asian cultures where even conversations about such topics are considered taboo^3-5. This fear of social judgment prevents these women from receiving needed health care, such as screening and prevention of sexually transmitted infections (STIs)^3,6, which poses great risks such as pelvic inflammatory disease, ectopic pregnancy, and infertility⁷. Although shifts in sociocultural beliefs have attempted tflargo decouple female sexuality and marriage^7,8, many unmarried women still hesitate to openly discuss their sexual lives or seek related care, even for non-STI-related issues like cervical cancer screening and prevention (e.g., Pap smear, human papillomavirus (HPV) vaccines)⁶. These patterns reflect the enduring influence of traditional beliefs in many Asian cultures. For example, in Japanese culture, discussions about reproductive organs are considered to violate the code of civilized morality¹⁰. In China, even in cities where healthcare is more accessible, only one in ten unmarried women seek visits for stigmatized SRH care⁸. Similarly, in South Korea (hereafter referred to as Korea), few unmarried women seek care for SRH issues, even when they are symptomatic^10,11. Although the Korean government has promoted the seeking of the necessary care from an early age (e.g., supporting 12-year-old girls to receive the HPV vaccine and counseling¹¹), few unmarried women pursue SRH^6,12. This stigmatization could lead to worse health outcomes. For instance, Korean women living in Korea have a cervical cancer incidence 7.1 times higher than non-Latino White women, while Korean immigrant women exhibit a 5.95 times higher incidence⁶.

For other types of stigmatized healthcare, such as acquired immunodeficiency syndrome¹³(AIDS), miscarriage¹⁴, and pregnancy loss²³, online communities have helped people connect and openly discuss stigmatized healthcare. By engaging in structured activities in a supportive and protected space with others who are also burdened by stigmas, participants of these online communities felt supported to reflect on and discuss their experiences^13,14. Furthermore, network-level disclosures of stigmatized health experiences on a one-to-many basis became a source of support for invisible and currently silent individuals with similar experiences in their network²³. The support for reflections and discussions about their experiences led to a feeling of liberation and encouragement to disrupt the prejudices detrimental to their health¹³. Yet, little work has examined their use to support unmarried women in discussing and seeking stigmatized SRH. In this paper, we address that gap by creating a supportive and protected online community with guided activities related to SRH. We then studied its effect on unmarried women in Korea, one of many Asian cultures where SRH discussions and care-seeking continue to be stigmatized. We describe how the guided activities within this safe space supported our participants in reflecting, discussing, and, in some cases, ultimately seeking SRH care.

Methods

We created an online community for unmarried Korean women using a known Human-Computer Interaction method, asynchronous remote communities (ARC), to support structured reflection and discussion of the culturally taboo topic of SRH. We describe ARC, participant characteristics, platform selection and privacy measures, activities and study procedures, and analysis in the subsections. This study was approved by our university’s Institutional Review Board.

Asynchronous Remote Communities

ARC are online communities employed for research purposes. They allow participants to join an online community surrounding a shared interest and connect through structured activities created by researchers^13,15,16. Researchers have employed ARC as a helpful method to address related difficulties of conducting studies with people who have constraints in location, time, privacy, and stigma^13,15,16. ARC allows participants to join the online community created by the researcher without having to allow researchers into their environments or be physically present during activities^13,15. Most importantly, participants do not know who the other participants are and thus can share their thoughts and experiences without inhibition due to social, cultural, and political climates^13,14. ARC studies with individuals from marginalized communities benefit them by creating a supportive space where they could socialize and vent about their problems and seek support without disclosing their identities¹³. Thus, we found potential in ARC to build a supportive and protected environment where unmarried women could safely and freely reflect on and discuss the culturally taboo topic of SRH.

An ARC study involves a group of participants in an online environment (typically a private online group or community created by the researcher) completing periodic activities both individually and as a group^15,17. Commonly used activities are built upon MacLeod et al.¹⁵’s original set of activities that were inspired by traditional Human-Computer Interaction research methods (e.g., focus groups, surveys, diaries, photo elicitation, and personas) and then were expanded by Phrabhakar et al.¹⁶ and Maestre et al.¹³’s ARC studies. Participants complete ARC activities at any time during the period specified by researchers (e.g., a week)¹⁷. Participating in these activities allows ARC participants to dedicate time to contemplate each activity topic, offering them the opportunity to organize their thoughts, articulate them through written or verbal expression, and delve into the thoughts and experiences of others— all while alleviating the pressure associated with completing a formal, in-person research activity^13,15,17.

Participants

We recruited 26 unmarried Korean women participants who ranged in age from 20 to 34 (μ = 26.8, σ = 3.1) through snowball sampling and from university research-study recruitment boards. We used email to send our informed consent document to anyone expressing interest in the study and called each of our potential participants to walk through the document and answer any questions that they had about the study. After the call, we asked them to send the signed document if they were interested in participating. All participants received primary and secondary education in Korea and were all currently living in Korea. No participants were currently married, nor had they been married before. All participants had used online communities prior to the study. Each participant was compensated $70 for completing the study, regardless of their level of activity. Participants who completed the evaluation interview received an additional $30.

Platform Selection and Privacy

We built the ARC on its own platform using Wix.com, which allows us to restrict access to community content for non-members. It also enabled the researchers to disassociate participants’ ARC identity from their other online identities by creating passwords and usernames for the participants without linking their email addresses. We chose not to use private Facebook groups, a popular choice of platform for existing ARC studies^13-16, because our participants used online communities separated from their social media accounts to search for SRH information or advice, often due to privacy concerns. Also, to ensure the privacy of the users when discussing a taboo topic, we randomly assigned each participant a Korean pseudonym that was not associated with any of the participants’ names as their usernames.

Activities and Study Procedures

We prepared a set of activities inspired by Dunbar et al.¹⁷’s and MacLeod et al.¹⁵’s ARC method blueprint of activities prior to the study. We developed additional activities to support reflection and sharing of thoughts and experiences on SRH. In Table 1, we elucidate the activities that participants completed during their 9-week study participation, which is a typical length for ARC studies¹⁷. Two activities—Ask Me Anything (A10) and Diary (A11)—were available from the study start date to the study end date to facilitate socializing and communication among participants.

Table 1.

ARC Activity Descriptions. Week = Week introduced in the study. The bold-faced activities (A2, A4, A5, and A7) were most relevant to the ARC outcomes discussed in this paper.

Week	Activity	Description
1	A1: Introductions	Participants introduced themselves without direct identifiers (e.g., name, age, address, region, contact information).
1	A2: Ranking of Problems	Participants chose the relevant reasons for difficulties in seeking support for SRH care from the list of reasons and ranked the top three reasons that make it personally difficult for them to seek support.
2	A3: Advice Columnist	Participants acted as advice columnists giving advice to a fictional character going through a common SRH care problem that unmarried Korean women face.
3	A4: Open-Ended Questions	Participants posted replies to two prompts given by the researchers. The first prompt was on the appropriate timing and place for women’s health issues education. The second prompt was on how they would approach or not approach their hypothetical daughters when they are experiencing SRH care problems.
4	A5: Circle Network Diagram	Participants used household objects to illustrate how comfortable they were sharing information with different people by drawing circles with themselves at the center and placing people at different distances from the center.
5	A6: Personas	Researchers provided an explanation of microaggressions and their negative impacts on health. Then, the researchers created and posted 2 microaggression perpetrator personas and asked participants to critique them and discuss how representative they are of their own lives.
6	A7: Things I Wish I Knew & Photo Elicitation	Participants were asked to share what they wished they knew when they were younger related to their SRH care. Participants were also instructed to upload 1-2 photos (either self-taken or stock photos) representing the content or theme of their letter to their younger self if they were comfortable with it.
7	A8: Microaggression Counteraction Tool Testing	Participants gave feedback on 4 microaggression counteraction tool prototypes that showed how negation or invalidation of unmarried Korean women’s support seeking for SRH care could be counteracted.
8-9	A9: Debrief Survey & Reviewing Others’ Responses	Participants were asked to complete a survey to debrief their experiences in the study. Also, the participants were asked to review the Q&A board and the diary board during weeks 8 and 9.
1-9	A10: Ask Me Anything	Participants posted questions on women’s health issues or problems and receive feedback from other participants.
1-9	A11: Diary	Participants wrote down details about a specific type of women’s health event as it occurs.

A discussion board was created for each weekly activity, and the most recent weekly activity was posted on top to increase its visibility. All activities’ responses were shared except for the Debrief Survey & Reviewing Others’ Responses (A9). All participants completed all the weekly activities (A1-A9). All participants were sent emails about the week’s activity when it was posted. Additionally, all participants were sent reminder emails three days before the activity, and participants who had not completed the activity one day before the deadline were sent another email. Each weekly activity was designed to take approximately 15 minutes to complete. The activity completion deadline was set to one week after the activity had been posted, but participants were granted deadline extensions upon request.

After the 9-week study participation, participants were asked to participate in an optional evaluation interview that lasted approximately 50 to 60 minutes. We asked about their overall experience with the ARC, the enjoyability and difficulty of the activities, what activities supported them in thinking about and/or discussing the culturally taboo topic of SRH, whether and how the activities helped them discuss the culturally taboo topic, and whether and how the activities affected their seeking of SRH. Twenty-one participants completed the evaluation interview. For the 5 participants who did not participate in the evaluation interview, their study participation ended after week 9.

Analysis

We audio-recorded the evaluation interviews and used a professional transcription service to have the recordings transcribed verbatim. After transcribing the interviews, the transcripts were translated by the first author (who is a native Korean who went to school in Korea but received additional intensive English education in middle and high school). We coded the transcripts with the ATLAS.ti software using an inductive approach¹⁸. First, to derive codes representing dominant concepts in the data, the first author read and coded through each transcript. She then clustered related codes into overarching categories using an affinity diagramming approach, wherein she arranged coded excerpts into clusters according to similarity. To validate the coding scheme, she iterated on affinity diagramming with the second author. Discussions were conducted with all authors at every stage to further ensure validity.

Results

In this paper, we provide a high-level evaluation of how reflecting on experiences about SRH every week in a supportive and protected online community led to the two primary ARC outcomes (Figure 1): (1) being more open-minded about SRH and expanding SRH discussions with others and (2) making or considering making visits for SRH care. We focus on elucidating activities A2, A4, A5, and A7 because they were most relevant to the two outcomes.

Figure 1.

The flowchart diagrams describe how reflecting on experiences about sexual and reproductive health (SRH) every week in a supportive and protected online community supported women’s reflections and realizations (represented in the rectangle diagram shapes) and led to the ARC outcome (represented in the diamond diagram shape) in each row.

ARC Outcome 1: Being More Open-Minded about SRH and Expanding SRH Discussions with Others

While thinking about and verbalizing their responses for the weekly activities, participants reflected on their current limitations in SRH confidants and sources of help, especially with the Circle Network Diagram (A5) activity. Most participants did not share SRH concerns with even their close friends or mothers because of a psychological barrier.

I thought that I could have shared these issues with my friends (although I’m not sharing right now). I also thought that I couldn’t even share it with my mom even though she’s family. I felt a psychological barrier of some sort. – P1

P6 elucidated on the psychological barrier that thinking about SRH is not easy for unmarried women because of the deeply rooted societal perception that the OB-GYN is a place for only married women who have had sexual experiences.

I hadn’t really thought about the topic of women’s health before I joined this study. I just thought of it when I was thinking of the broader category of my personal health. I think it’s harder for unmarried women to think about this (SRH concerns, issues, and experiences) compared to married women. Although women’s rights in our country (South Korea) have been improved, it’s still unnatural (for unmarried women) to go to the OB-GYN. The OB-GYN is limited to married women. Going to the OB-GYN is connected to your sexual experiences, symptoms or illnesses related to your sexual experiences. That’s still seen in a very negative light. – P6

While completing A5, many participants had the opportunity to realize that they were reluctant to share SRH concerns and experiences even if they thought they were not reluctant before. This realization led them to think that they would benefit from talking about these concerns with others.

I thought that I wasn’t reluctant to talk about sexual/reproductive health concerns, but I realized (while participating in this study) that the reason I don’t talk to others about these (sexual/reproductive health concerns) is that I am reluctant because of the negative societal perception. I thought that it would be beneficial for me to talk about these concerns with others. – P22

Another factor that led participants to become more open to the idea of discussing or even initiating SRH discussions was finding validation from other participants’ responses that they were not alone. Participants felt reassured that other unmarried women had similar concerns that were rooted in the social prejudice against unmarried women seeking SRH care.

It was reassuring in a way to get to know that other people had similar or the same concerns, especially about being hesitant to seek SRH care because of others: what they say or how society will judge you. – P16

Thus, with these realizations and reflections through talking about their SRH experiences in the ARC, many participants found value in these discussions about the culturally taboo topic. The values they found in the online discussions transferred over to offline discussions, and many participants found themselves to have more open-mindedness in discussing SRH concerns and experiences outside the ARC.

Although this is a study and not a currently usable community, providing the opportunity for people to talk about their experiences and thoughts had a meaning of its own. I felt like I could talk about my thoughts and experiences (on SRH) better in real life. – P1

Participants further wanted the confidants with whom they were sharing their SRH concerns to better understand and resonate with them.

I felt that I could bring up things like “my period is irregular” with more ease now. I now have this feeling that I hope that the person I’m sharing this with knows this about me and can resonate. – P26

Moreover, a few participants took the initiative to discuss or share their SRH concerns and experiences. These participants realized that discussions about SRH are not occurring because no one initiates these discussions, even though they all share similar concerns. They thought that if they initiated the SRH conversations, other unmarried women who have similar concerns could join the conversations and support each other by sharing more about their concerns and experiences on the culturally taboo topic.

I thought about initiating these conversations (about SRH) more. It’s just that no one initiates these conversations. Everyone has similar concerns, so if we open up the space for these conversations, people could resonate and share more. – P6

Participants stated that they did not expand their SRH conversations with others in the past because they were worried about how others would perceive them as the conversations were related to sexual experiences, and most people around them do not discuss SRH explicitly.

I thought more about why I don’t talk to others about this (SRH) and why I thought that it was kind of unnecessary. Since it’s related to sex, I don’t want the person I’m sharing this with to look at me in a weird way. Also, a lot of people don’t talk about this, and the symptoms of the commonly discussed topic of vaginitis are kind of disgusting. - P22

After their reflection on the current limitations of discussing SRH-related topics with others, they realized that SRH is not an embarrassing or shameful topic to discuss. This realization occurred especially with the second prompt of the Open-Ended Questions (A4) activity: how unmarried women would approach or not approach their hypothetical daughters when they are experiencing SRH care problems. While thinking about and verbalizing the response to the A4 prompt, they realized that SRH is not a shameful topic and that it should and could be discussed with even their future daughters.

While I was thinking about how to talk to my (future) daughter if she is having problems or concerns related to sexual or reproductive health, I realized that these issues are not something to be embarrassed about. I wanted to discuss these things in a warm and inviting manner with my daughter in the future. – P8

With this realization that SRH is not an embarrassing topic and could and should be discussed with others, many participants considered expanding whom they shared SRH-related issues and concerns with–participants’ SRH confidants and sources of help–after the circle network diagram exercise in A5. The realization that occurred in A4 was put into practice with A5.

I never explicitly perceived who I was sharing my concerns or experiences about SRH with. Through the Circle Network Diagram activity, I was able to specify the abstract “others that I share with” into specific groups and set up clearer boundaries for whom I want to include. I thought hard about the distance between me and others. I thought about which friends I could share with, how close I am with them, and what situations they are in. – P6

Many participants who had not shared their SRH-related concerns and experiences online also considered extending the range of people with whom they share to online communities. These participants felt more comfortable sharing with others online after participating as members of an online community through the ARC.

I considered broadening the range of people with whom I share concerns about SRH. I considered if I should only tell people who are close to me or also share online which I wasn’t comfortable with. I decided that I’d be able to share with my mom, my close friends, and online communities after participating in this community (ARC). – P2

Participants who expanded their network of people with whom they share their SRH-related concerns and experiences during or after the study further broadened what they discuss about the culturally taboo topic with their family and friends. With friends, they were able to share concerns or fears that they had not shared with them before, such as their fear of seeking care for SRH.

I thought I was pretty open about SRH care, but I realized that I was scared about going (to the OB-GYN). It was not something I would have wanted to share before, but I shared that with my friends. – P16

With family members, participants experienced having conversations about SRH that they had never had with them prior to their participation in the ARC. These new discussions occurred with female family members, especially with their mothers, and they were initiated in two ways. The first way was them initiating these conversations with their mothers after thinking about how they would approach their hypothetical future daughters if they had SRH-related concerns with the second open-ended prompt of the A4 activity.

My mom says that I don’t need to talk about sexual and reproductive issues with her, but while doing the activity on what I would say to my (future) daughter if she came to me with her own concerns, I realized that I wanted to talk to my daughter about these things. I thought more about what exactly I wanted to share with her and how I wanted to share those things with her. These considerations helped me communicate with my mom more about these things. – P18

The second way the conversations about SRH were initiated was by participants’ mothers asking about the gift cards the participants were given as compensation. Regardless of the way the conversations were initiated, the conversations with their mothers on a topic they had not discussed before helped participants understand their mothers’ experiences with stigma related to unmarried women discussing SRH-related topics with others.

I shared that I was doing this study because my mom asked where I was getting all these gift cards. I don’t talk to my mom about my personal reproductive health concerns, but she shared her experience of using tampons when they first came out. It came out in her twenties, and when she shared with her friends that she was using tampons, her friends called her a w**** and worn out for using them. – P5

Thus, with the reflection on experiences about SRH every week, participants were able to engage in and initiate never-had or deeper conversations with people they expected support from on SRH-related issues.

ARC Outcome 2: Making or Considering Making Visits for SRH Care

We expected the ARC-based online community to support unmarried Korean women’s discussion of the stigmatized topic of SRH with others. Unexpectedly, we also found that the ARC-based online community affected participants’ SRH care-seeking at the clinic.

The making or consideration of making visits for SRH care started with participants’ realization of their hesitancy in making visits for SRH care. While completing the Ranking of Problems (A2) activity, they realized why they were hesitant to seek SRH care: the social prejudice against unmarried women going to Obstetrics and Gynecology (OB-GYN) visits.

I realized I did have prejudices against unmarried women going to the OB-GYN. I never thought I had any problems with going to the OB-GYN, but through the activities, especially the earlier one (Ranking of Problems activity), I realized my prejudices were blocking me from going. Even if I had pressing issues, I treated them as insignificant issues because of my prejudice. – P17

Even participants who had sought SRH care before realized that they were still hesitant to continue seeking SRH care.

I thought I was okay with going to the OB-GYN by now (after having visited the OB-GYN). However, I realized that I still had hesitancy to go to the OB-GYN because of the negative societal perception. – P16

Another contributing factor that led participants to make or consider making visits for SRH care was learning about other unmarried women’s experiences that differed from their own. Such learning occurred during their participation in A5 and Things I Wish I Knew & Photo Elicitation (A7) activities. With A5, participants were able to realize that some unmarried women go to the OB-GYN despite the similar difficulties they endured due to the stigma associated with SRH. With A7, they learned that many unmarried women who have sought the stigmatized SRH care did not show hesitancy in seeking necessary care.

While doing the Circle Network Diagram activity, I realized that there are a number of people who go to the OB-GYN. While doing the Things I Wish I Knew (& Photo Elicitation) activity, I realized that people who go, go without hesitancy. – P14

Furthermore, participants learned that the unmarried women who go to the OB-GYN sought SRH care for issues that they had not considered to be a serious issue that warranted making an SRH care visit.

In the community (ARC), people were going to the OB-GYN for far less serious problems. I didn’t go to the OB-GYN during the study, but I am now more open to going to the OB-GYN for follow-ups. – P16

After the study activities, many participants who had not sought SRH care prior to the participating in the ARC-based online community considered making visits for SRH care.

While participating in it (ARC) and after too, I felt like the OB-GYN became a place that I could go to. I don’t know if this is a good example, but I felt like it could be a place I could go to if I had a common cold. – P13

A few participants even went to the OB-GYN and chose to share more information with their clinicians. Participants who had not been able to follow through with recommended care were able to better understand their SRH through further discussions with their clinicians and follow their recommended care.

I was hesitant to go (to the OB-GYN) because I didn’t want to talk about my sexual experiences. During this study, I realized that I could share my experiences easily with others when it was anonymous. I started to wonder why I couldn’t open up to my gynecologist. … Previously, I came back from the OB-GYN because I didn’t want to do the ultrasound. However, during the study, I made an appointment to go again and do the ultrasound. I found out that I had polycystic ovary syndrome. I asked my gynecologist a lot about the syndrome, and my gynecologist was surprised that I suddenly shared so much with her. I built a better rapport with her during that visit, at least, I think so. – P18

Participants who were still hesitant to make in-person visits for SRH care sought care with clinicians online.

After these two activities (Circle Network Diagram and Things I Wish I Knew & Photo Elicitation activities), I don’t think I was ready to go to the OB-GYN in person, but I did seek care online with a gynecologist on a (SRH) issue that I had a problem with. – P14

Although small in numbers, we found value in the ARC-based online community to not only support unmarried women’s discussion of the culturally taboo topic of SRH but also further support unmarried women’s SRH care seeking.

Discussion

With our ARC-based online community, we discovered that establishing a safe space for reflecting on and sharing SRH experiences can effectively catalyze and advance the pursuit of stigmatized SRH among unmarried women. Our discussion outlines the potential benefits of such supportive and protected online communities in supporting these women in discussing and seeking SRH. First, we reflect on how ARC’s features for time, location, and privacy contributed to the creation of a secure online environment for participants to openly reflect and share their SRH experiences. Subsequently, we explore how ARC served as a catalyst, enabling the initiation or expansion of SRH conversations with female family members crucial to health-oriented family communication. Lastly, we highlight how ARC served as a medium for resonating and learning from the SRH experiences of other unmarried women.

ARC as a Safe Online Community for Protected Reflection and Sharing of SRH Experiences and Concerns

When unmarried Korean women are trying to pursue SRH, they lack support from people whom they trust to support and help make decisions with them, such as their mothers, their network of friends, and romantic partners^6,10,19. Often, they are told by these expected supporters that changes in their marital status or time would resolve their medical problems and that they are promiscuous for pursuing necessary SRH care^10,19. Thus, with the severe lack of support offline, unmarried Korean women seek haven in online spaces, specifically in online forums where they could ask questions anonymously, such as NatePann and Naver Jisikin¹⁰. However, these online spaces are often not actually safe because unmarried Korean women face judgments rooted in social prejudices from other members that condemn and invalidate their SRH-related concerns and experiences¹⁰.

Given this lack of support, unmarried Korean women are in urgent need of a safe online space to reflect on and share their SRH experiences and concerns with others who are also seeking support. In line with the previous ARC studies conducted with stigmatized groups^13,14, the ARC-based online community served as a supportive and safe space where unmarried Korean women would reflect on and share SRH experiences and concerns while still having their identity protected (i.e., through the use of pseudonyms in the community) at a time and space convenient for them. Therefore, although SRH was a difficult topic for participants to share with others, even with people very close to them (e.g., mothers and close friends), they were able to deeply think about and share their thoughts on this “shameful and immoral” topic.

We underscore two crucial steps we took to ensure the protection of our participants’ identity and for them to feel safe to reflect on and share their concerns and experiences related to the stigmatized SRH. First, we established an uncoupled platform by creating a separate online community platform that was not linkable to any social media accounts or email accounts. Second, we assigned pseudonyms for usernames and passwords randomly, so that any subconscious representations of the participants’ identities would not be shown. With these two steps, we were able to further dissociate participants’ identities in the ARC-based online community from their offline and other online identities. The extra measures put in place to ensure participants’ identity protection served as a base for them to reflect and share their SRH-related experiences without feeling shameful or burdened to discuss a stigmatized topic. Thus, we saw ARC as having the potential to serve as a safe space with the protection it provided and the offering of the time and place to pause and reflect on the culturally taboo topic of SRH.

ARC as a Catalyst for Initiating or Expanding SRH Conversations with Female Family Members

Parents have been a primary source of stigma narratives^6,10,19,20. Thus, public health efforts have emphasized the importance of health-oriented family communication, especially between mothers and daughters, as mother-daughter SRH communication has been identified as one of the most effective prevention strategies in promoting SRH^19,20. Also, many unmarried women from Asian cultures that stigmatize SRH shared a desire to have increased communication about SRH with their families^19,20. Yet, SRH conversations between mothers and daughters in Asian cultures are limited or non-existent, even based on recent research^6,10,19,20.

The ARC-based online community supported unmarried women to reflect on their current limitations of whom they share their SRH concerns and experiences through the Circle Network Diagram activity of A5. Participants found it beneficial to have a specific time and space dedicated to reflecting on their relationships and the individuals they felt comfortable confiding in regarding their SRH concerns and experiences. This allowed them to delve deeper into the reasons behind their choices, exploring both the connections they could trust and the barriers that prevented them from sharing with certain individuals.

Through the second prompt of the Open-Ended Questions activity of A4, where they contemplated how they would approach SRH conversations with their hypothetical daughters in the future, participants also considered their current discussions on SRH with their mothers. In doing so, they became aware of areas for improvement in both past and ongoing SRH dialogues with their mothers. The realization of both how limited or non-existent SRH conversations with their family members are and how they wanted the conversations to improve helped participants initiate or expand conversations with their mothers and family members. The initiation and expansion of SRH conversations helped them to understand their mothers’ experiences with SRH better and deconstruct the generational passing down of the negative sociocultural beliefs that inhibit discussions and the pursuit of SRH. Thus, we found potential in ARC-based online communities to improve health-oriented family communication among female family members (e.g., mothers and grandmothers) who have the most impact on unmarried women’s pursuit of SRH.

ARC as a Medium for Resonating with and Learning about Other Unmarried Women’s SRH Experiences

People from stigmatized communities have turned to the Internet to cope and compensate for a lack of access to information and the inability to form offline relationships with others who share their stigmatized condition^13,14,21. The Internet has provided a means for them to disclose information regarding their stigmatized conditions more easily without necessarily having to reveal their identities and feel embarrassment^13,14,21. With the online community that we created using the ARC method, we found that this ARC-based online community supported learning about other unmarried women’s experiences with SRH that were similar to and yet different from their own. The activities that participants found particularly impactful in facilitating relatability and learning about shared experiences were the Ranking of Problems (A2), Circle Network Diagram (A5), and the Things I Wish I Knew & Photo Elicitation (A7) activities. Through A2, participants first reflected on if and why they were hesitant to seek care for SRH. With this reflection, they were able to realize that social prejudice and stigma were major reasons for their reluctance in SRH care-seeking. Through both A5 and A7, participants recognized that despite facing similar challenges associated with the stigma surrounding SRH, some unmarried women still sought care at clinics. Moreover, both A5 and A7 revealed that unmarried women often seek care for SRH issues that they hadn’t previously considered worthy of clinic visits. This realization not only facilitated a sense of relatability but also broadened participants’ perspectives on SRH care needs.

By engaging with others’ experiences in A5 and A7, participants not only empathized with fellow unmarried women but also gleaned insights into different coping mechanisms for dealing with SRH-related stigma. This dual understanding served as a catalyst for encouraging further discussions on stigmatized SRH topics and promoting proactive attitudes towards seeking SRH care.

This finding is also supported by Maestre et al.¹³’s study on creating an ARC for individuals with AIDS, which found that participants from a stigmatized population enjoyed activities that allowed them to learn from other people’s experiences and ideas and relate to what they do in their lives. Similarly, online health communities and forums with individuals who do not have a stigmatized condition have been shown to empower patients by learning from each other²².

In this study, we have found that some participants not only resonated with and related to other participants’ experiences but took it one step further. These participants who had not had an SRH care appointment prior to participating in the online safe space took the step to go to an SRH care appointment. Thus, we found the ARC-based online communities supported unmarried women’s pursuit of SRH clinical care when they learned that others in a similar situation had taken such action.

Limitations

This work must be considered in light of its limitations. The first author who conducted the interviews with the participants was from the same stigmatized population. Thus, the participants may have felt a connection with the interviewer and enabled thoughtful responses. However, they may have also felt pressure to be portrayed as strong women who were making changes to take charge of their own health. Future studies should explore how the ARC outcomes differ from having the interviewer not be from the same population as the participants.

Conclusion

This research highlights the potential of ARC-based online communities as safe havens for unmarried women in cultures where SRH is stigmatized. By fostering a supportive and protected environment, these platforms facilitate the initiation and expansion of SRH conversations, as well as the seeking of SRH care. Participants benefited from a dedicated time and space within these communities to reflect and share concerns and experiences related to SRH. Through guided activities, they were able to delve into their own thoughts and experiences about SRH, while also resonating with and learning from the experiences of other unmarried women. This newfound clarity on leveraging ARC-based online communities to support SRH pursuits shows significant potential for improving the health outcomes of unmarried women, especially in cultures where SRH care is stigmatized.