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Sharing abortion experiences online: how my research is being shaped by the global pandemic

I know that I am not the only researcher whose project has been impacted by the recent COVID-19 pandemic. But, in an unexpected twist, my research might become ultimately more relevant in the long run. You see, I am a PhD student looking into how women talk about their abortion experiences, and interact with the experiences of others, in online spaces. One in three women will have an abortion in their lifetime, making it the most common gynaecological procedure worldwide. And yet, many women choose not to talk publicly about their abortion experiences because it remains a stigmatised procedure, criminalised in many countries, and highly regulated in others. Whilst choosing to remain silent about their abortion may protect them from the stigmatising reactions of others, this also prevents women from accessing social support, and further perpetuates the silence and stigma around abortion more generally.

Why research online abortion disclosures?

My Masters research (conducted in 2018) looked at who women chose to talk to about their abortion with friends, family, and conception partners. But several women described sharing their abortion experiences online. For some, they looked online because they didn’t know of anyone in their life who had previously had an abortion, and were looking for some direct experience to comfort them. For others, posting about aspects of their experience was their way of fighting abortion stigma and normalising the procedure. However, little research to date has focused on how women use the Internet to share their abortion experience, despite the existence of many designated online spaces in which to do so (shoutyourabortion.com, womenonweb.org, etc).

We know that individuals with other healthcare needs and conditions have utilised online chat rooms, support groups, and message boards, and benefit from disclosing their experiences through computer-mediated communication. Online, people can connect with others without geographical boundaries, when it is convenient for them, and from the comfort of their own home. The anonymity provided by Internet communication has been demonstrated to encourage those living with stigmatised conditions, such as HIV to speak with others in a similar situation. The support provided in such contexts is sometimes perceived to be more valuable than that provided by those without that shared experience. These online spaces may foster empowerment by offering experiential knowledge of, for example, what a medical procedure will be like, knowledge that is often not provided by healthcare professionals.

Abortion online and COVID-19

My study explores how and why women use these online spaces in the context of their abortion experience, in the hopes that with this knowledge, I can contribute to better support for women and reducing abortion stigma. But with current government guidelines about social distancing and the importance of staying at home, these online resources might become even more vital for women in the UK (and globally). We all have to be more creative with communicating with those outside our household at the minute. But there is a particular question around how women can access abortion services safely, without exposing them to unnecessary risk by requiring them leaving their homes during this pandemic (for further information regarding this topic read Carrie Purcell and Nicola Boydell’s blog post here)

This unprecedented time could be a chance to utilise existing online resources for women during and after their abortion. For instance, womenonweb.org provides abortion pills and telemedicine for women where abortion is illegal. They have demonstrated the safety and utility of women accessing abortion services online. Initially the UK governments refused to embrace this option, however, they have since changed their guidance. Women in Scotland, England, Wales, and Northern Ireland (with the help of British Pregnancy Advisory Service) can now have the consultation using telephone or video calls, and can take both early medical abortion medications (mifepristone and misoprostol) at home during the first 10 weeks of pregnancy.

With these movements towards telemedicine abortion care, and in this time of heightened computer-mediated communication and uncertainty, it is crucial to understand how and why women are using online spaces to post about their abortions and interact with other women’s stories. Are they receiving the healthcare and social support they need? Are they experiencing abortion stigma either on or offline? This study seeks to answers these questions by interviewing women and speaking to them about their personal experiences with talking and reading about abortion online.

Want to contribute your story/experience?

I have recently requested an amendment to my study’s ethical approval, adapting my research methodology to allow for interviews via Zoom or telephone. I want to hear from women about why they have used online resources and spaces before, during, and after their abortion. If you would like to participate in this study or just find out more,
Check out my study’s Facebook page
Please follow me on Twitter for more updates: @Rwilsonlowe

Working together to understand condom and contraception use among young people in Scotland

We are now about half way through the CONUNDRUM project – a research study aiming to understand the social context shaping use and non-use of condoms and contraception for penetrative sex among young people in Scotland.

Rather than rush headfirst into “collecting” data, we’ve spent the past six months working with young people and a range of professionals involved in supporting young people’s sexual health to better understand what they think this study needs to focus on. At the midpoint of the project, now seems like a good time to pause and reflect on what we’ve been doing so far.

How did the CONUNDRUM project come about?

CONUNDRUM emerged from conversations between people involved in the design and delivery of services providing free condoms and contraception. They perceived changes in uptake among young people over recent years and wanted to find out what was going on. While condoms remain a commonly used form of protection against sexually transmitted infections and (where relevant) unintended conceptions, over the last five years, there have been strong indications in some areas of Scotland that fewer young people than before are accessing free condom services, such as c:card schemes. National data also suggest a decline in use of some forms of Long Acting Reversible Contraception (LARC), such as the implant, IUD and IUS, among women under 20.

Among those working to improve young people’s sexual health, these changes raise important questions – have young people’s attitudes towards using condoms and contraception changed in recent years? What matters most for young people in accessing free condoms and contraception, and are these priorities being met? And how do young people navigate the complex array of information and messages about sexual health in general, and condoms and contraception in particular?

To investigate this situation, three NHS health boards (Greater Glasgow and Clyde, Lanarkshire, Lothian) in partnership with Scottish Government, asked us (a team of researchers at University of Glasgow) to explore the multi-level and complex factors shaping young people’s use and non-use of condoms and contraception for penetrative sex in Scotland. In particular, the study commissioners wished to understand the contemporary social context in which young people are making decisions about condoms and contraception. Our aim is to work with young people to shape the study throughout, including to co-produce recommendations for future sexual health policy and service provision. We were asked to provide a broad picture of the social context, and to ensure multiple experiences and perspectives are represented in the research. This includes working with young people living in a range of locations and circumstances, and with a range of gender and sexual identities.

What have we been doing so far?

The first phase of CONUNDRUM involved 7 interactive workshops – six with young people (38 total), and one with 22 professionals involved in supporting young people’s health and wellbeing (e.g. health promotion workers, youth workers, school and family nurses, pharmacists).

We designed these sessions to help us understand young people’s and professionals’ views on what topic areas to explore with young people in the next phase of the study, which will involve small group discussions and an online survey. We used systems thinking tools, including a technique called rich picture, to open up conversations about the numerous factors shaping young people’s use and non-use of condoms and contraception.

images from workshops with young people, including rich pictures and study priority setting activities

These discussions underlined a basic, yet crucial point: no one factor ‘causes’ young people to use or not use condoms or contraception. Rather, young people’s experiences in relation to condoms and contraception are dynamically shaped through their interactions with many different actors and contexts within a complex system that involves sexual partners, friends, families, education systems, health services, community and faith groups, mainstream and social media, porn, and so on. Not only does this complex social system have many interrelated parts, it is also continuously evolving – whether that be due to social changes (e.g. changing norms regarding roles and responsibilities for sexual health), technological changes (e.g. development of new prevention technologies, growth of digital health services, proliferation of apps offering new ways to sexually connect with others), political changes (e.g. cuts to funding for sexual health), and so on.

Building cross-sector partnerships and ways of working that allow us to engage with this complexity matter because “solutions” to improving sexual health are unlikely to be simple or located just in one part of the system. Improving sex education in schools, or innovating sexual health services, would – on their own – not be enough. Rather, assessing and rethinking the system in a way that better protects and promotes young people’s sexual health requires the action and collaboration of many different partners, and young people must be at the heart of these efforts.

images from workshop with multi-sector stakeholders

What’s next for CONUNDRUM?

Building from the discussions we’ve had with young people and multisector stakeholders, our next steps are to further explore the priority topics identified in our first phase. As with everyone, we have had to adapt our plans in the context of the COVID-19 pandemic, meaning all of the remaining study activities will now be conducted virtually. This includes:

    • Small group discussions with young people living in three health boards (Greater Glasgow and Clyde, Lanarkshire, and Lothian);
    • An online survey which will go live in June 2020 and will be open to any young person aged 16-24 who lives in Scotland;
    • Collaboration with young people to co-develop policy and practice recommendations for the NHS and Scottish Government.

Thanks to everyone who has participated in CONUNDRUM so far! If you would like to get involved, be added to the mailing list for the final report, or if you have any comments or feedback, please get in touch with us at sphsu-conundrum@glasgow.ac.uk

You can also find project updates on twitter at #ProjectCONUNDRUM.

COVID-19 & Questions for SRHR & social justice research

As we all have had to dramatically change our professional and personal practices in the last few weeks – changes which will last for weeks, if not months or longer – what are the implications for cross-sector collaborative research in sexual and reproductive health and rights (SRHR) and social justice? While our research may be stopped, temporarily paused, or shifted to virtual methods to accommodate new material conditions, much more than our methodologies will be affected by COVID-19. We have already witnessed significant disruption to health care practices and services, where existing services have been temporarily suspended, moved online or continue in extremely challenging circumstances; and we are now faced with the immediate impact of physical distancing, increased ill-health within communities and radical transformations of livelihoods on the social, sexual and health practices of communities.

The demands of SRHR and social justice do not stop during a global pandemic. This public health crisis presents a complex set of challenges, implications, and – potentially – innovations – for sexual and reproductive health, and research should play a key role in documenting, understanding and supporting these changes. Below, we pose a number of questions that are intended as a starting point for a collaborative SRHR and social justice agenda. That is, we aim to start conversations, encourage dialogue between and across research, community, clinical and policy partners and to support our much-needed collaborative efforts in the midst of the current crisis.

What are the immediate responses to current public health measures (including but not limited to physical distancing), and how can SRHR and social justice be safeguarded and supported in this context?
As services and practitioners respond in uncertain times, we need to ensure that existing SRHR and community support services are safe, that ongoing access is facilitated, and that these transitions to new modes of delivery and models of service do not exacerbate already existing inequalities. Where some services have significantly restricted or stopped entirely (e.g. Gender Identity Clinics, in-clinic STI testing), others have moved to telemedicine and online support (e.g. abortion services, private home testing, intimate partner violence services). How will these transitions affect not only the experience and effectiveness of these services, but the disproportionate burden of ill health, inequalities and injustices for those in already precarious positions? Beyond access to services, what are the material implications – and strategies for support – for those communities who rely on physical outreach support (e.g. people who live in remote and rural locations with limited/no internet connection or phone reception, people who are not digitally literate, and/or support for harm reduction amongst people who use drugs and/or who may be homeless) or who rely on income and/or provisions that necessitates physical contact (e.g. people who engage in sex work)?

How will increased and long-term delays to already over-stretched services and care affect existing socio-economic and socio-cultural inequalities and how can these be mitigated?
Even before COVID-19, support for sexual and reproductive health was already operating in a challenging environment; budget cuts, increased complexity of sexual health interventions, and the realities of structural barriers to health provided significant challenges and long waiting lists. What, then, will large-scale disruption to, and pausing of, services mean for the ongoing health and wellbeing? What does the absence of state provision mean for community care practices? Will this gap be filled by individual and/or more privatised health practices (e.g. self-sourcing of PrEP or gender-supporting hormones) and how might this affect more marginalized communities as well as government commitment to state services?

What role for community voice, involvement and rights?
Public patient involvement (PPI), and the meaningful engagement and participation of communities is recognized as an essential component of effective and sustainable SRH services. At times of crisis, how can the lived experiences and concerns of affected communities continue to be included in multi-sectoral responses? How can communities play a key role in the design of responses to COVID-19 and the re-organisation of services in the short, medium and potentially long-term? And how can we support the meaningful and ethical involvement of diverse communities at a time when physical contact is minimised and when ongoing inequalities and socio-economic disparities are heightened?

What are the longer-term implications of this crisis for SRH?
We know that testing and access to medications will be affected by COVID-19 as supply chains, physical mobility and staff capacity are disrupted. We also know that socially complex SRHR issues will feel the effects of this crisis for months and likely years to come. How resilient are communities, practitioners and even researchers, and how can they best be supported? What creative and generous responses will emerge from community need and how might these affect relationships with healthcare provision? What will the longer-term economic implications of this crisis be on funding for health services and organisations (third sector, community research) and how might this affect both how we work together and on what we prioritize?

These questions and concerns are by no means the only questions we need to consider. We would welcome further thoughts on the immediate, and longer-term implications of COVID-19 on sexual and reproductive health, rights and social justice.

Doing trans and non-binary sexual health research – George Burrows

I am an MRC funded Doctoral Researcher at the MRC/CSO Social and Public Health Sciences Unit (SPHSU), University of Glasgow. I have a background in biomedical science, adult nursing, sociology and research methods and have worked across NHS and third sector LGBT projects on sexual health, trans support and learning disabilities. In 2017, I completed a qualitative study on ‘emotional safety’ in trans adult’s romantic and sexual relationships. A lay report is available on request.

My current research looks at sexual function and medicalisation within trans and non-binary adults’ sexual experiences, and I am interested in intersectional perspectives, particularly around disability. Read more about my research at bit.ly/TNBStudy, where you can download the participant information sheet. The experiences of trans women and trans / non-binary people who were assigned male at birth are currently under-represented. If you have this perspective and would potentially like to be interviewed, please get in touch with any questions and for more details. You can email me at g.burrows.1@research.gla.ac.uk. I’m aiming to complete interviews by the end of June 2020.

What have I learned about trans and non-binary sexual health research?

The theme for this year’s LGBT History Month in Scotland is ‘what have we learned?’ in the thirty years after legislation that stopped conversations between teachers and school students about being LGBT1. Before looking at the legacy of this legislation and its relevance to my research, I’d like to look further back in history at some of the early research relating to trans (sexual) health. This was before the term ‘non-binary’ was known and understood as we know it today.

Two things stand out to me in the history of sexuality research, which have enduring effects on how we understand trans and non-binary people’s sexual health. Firstly, the concept of ‘inversion’ came about in the mid-nineteenth century2. Inversion referred to deviation from gendered norms, which included homosexuality as well as gendered expression through clothing. Sexuality and gender are undoubtedly complex and inter-related, and their conflation was perhaps a necessary part of the evolution of knowledge. However, the sexualisation of gender divergence by regarding it as a ‘deviant’ sexuality is counterproductive for understanding people’s identities and needs within present-day society.

Secondly, there have been many attempts to suppress knowledge development around sexuality and gender. Take, for example, the work of Magnus Hirschfeld, who was an early sexologist. He researched and published a book called ‘Die Transvestiten’ (The Transvestites) in 1910 3, 4 and established the world’s first Institute of Sexology in 1919 in Berlin. Although the book remains available, the primary data was lost when the institute was burned down in 1930 under the Nazi regime.

Closer to home and in more recent history, legislation known as Section 28 / Clause 2a was designed to suppress any positive sense of self that a young person might have the potential to develop in relation to non-heterosexual orientation. Local authority employees were prohibited from teaching or publishing materials that would “promote homosexuality or[…] the acceptability of homosexuality as a pretended family relationship” 1. In practice, teachers feared discussing gay, lesbian and bisexual identities at all, even in neutral ways, due to the risk of being convicted and losing their livelihoods. This left students without opportunities to gain support and positive role models of who they might be(come). Some schools went even further and promoted heterosexuality in their teaching. As part of my religious education class, I was required to design my own wedding, including the invitations and what I would wear on the day. Bear in mind that this preceded equal marriage, civil partnerships and any form of legal recognition of trans people in any part of the UK. Our Story Scotland has more information about Section 28 / Clause 2a and an archive of LGBT oral histories.

Over 15 years since the abolition of Section 28 / Clause 2a, its legacy endures. In my current research (see bit.ly/TNBStudy ), some trans and non-binary people have cited Section 28 as a reason for the resolute silence on queer lives during their formative years. The social environment suppressed young people’s knowledge, cultivating a lack of self-understanding and self-censorship.

The enduring conflation of sexuality and gender has had two main effects. Firstly, people who distinguished gender from sexuality in their own minds were sometimes misunderstood by other people, who read their gendered attributes as markers of sexuality. For example, people who were assigned female were assumed to be non-heterosexual rather than having a male or non-binary gender identity, or the sexual objectification of trans women. Some people self-censored to avoid being misunderstood in social situations. Secondly, the inaccurate representation of gender divergence as a sexual matter contributed to other trans and non-binary people taking longer to make sense of their own feelings and identities.

The medicalisation and sexualisation of gender divergence has also affected how trans and non-binary people think about and describe themselves. The history of medicalisation and sexualisation, particularly of trans women, has understandably made some trans and non-binary people wary of research, especially if it focusses on sexual health and relationships. I see this as a reason for the varied response across trans and non-binary communities to my call for participation. Many trans and non-binary people who were assigned female at birth have enquired and generously offered to be interviewed in my research. Trans and non-binary people who were assigned male at birth have been notably few among those who are seeking to take part. I understand this, while also still aspiring to speak with a wider range of people, so that my research has greater potential to increase the knowledge and evidence base to improve all trans and non-binary people’s sexual health.

If you are interested to know my research findings, you can ask me to send the summary report when it’s ready (expected at the end of 2021 or early 2022). Meanwhile, you can register for free to attend the ‘Sex, Drugs and Scotland’s Health’ conference at https://www.hiv.scot/Event/sex-drugs-and-scotlands-health where I will be attending and hope to speak about trans and non-binary sexual health. The conference is taking place in Dundee from 3rd-5th June 2020. I hope to see many of you there.

  1. Local Government Act. 1988, Her Majesty’s Stationery Office: UK.
  2. Chauncey, G., From Sexual Inversion To Homosexuality: Medicine And The Changing Conceptualization Of Female Deviance. Salmagundi, 1982(58/59): p. 114-146.
  3. Hirschfeld, M., Selections from The transvestites: The erotic drive to cross-dress, in The transgender studies reader, S. Stryker and S. Whittle, Editors. 2006, Routledge: London. p. 28-39.
  4. Hirschfeld, M., Die Transvestiten; ein Untersuchung über den erotischen Verkleidungstrieb mit umfangreichem casuistischen und historischen Material. 1910, Berlin: Pulvermacher. 562.

Beyond 2020: Reflecting on Scotland’s SHBBV Framework

IReSH members Nicola Boydell and Sally Brown reflect on the Scottish Government’s meeting ‘Beyond 2020 – Refreshing Scotland’s Ambitions in relation to Sexual Health and Blood Borne Viruses’ held in Perth in July.

What should the Scottish Government’s Sexual Health & Blood Borne Virus look like beyond its current 2020 remit? This was the subject of a day-long consultation that took place in the summer. A mix of NHS clinical or clinical related staff, third sector representatives and academics were brought together to discuss key issues and concerns about how to take things forward.

The meeting began with a keynote address from the Minister for Public Health, Joe Fitzpatrick where he announced the Scottish Government’s aim to eliminate Hepatitis C in Scotland by 2024. However, the overall focus of the meeting was to discuss how to make progress around the five outcomes of the SHBBV Framework; cafe style discussions with facilitators took place on each table, and key points and messages from all of these were noted.

Many of the discussions were focussed on particular sectors or clinical interests, framed around questions such as:

  • How can services and the third sector support people to remain engaged with HIV care and treatment?
  • What will be the key challenges and barriers to achieving HepC elimination by 2024?
  • How can we best target outreach testing?

There were also questions with a broader scope, such as:

  • How can we promote good sexual health across the population?
  • How can we better use our data to track impact and support change?
  • What are the inequalities in SHBBV facing Scotland’s diverse communities?

There was considerable discussion and dialogue on these issues. An emerging theme across these topics was the acknowledgement that sexual health and wellbeing is not solely a biomedical or clinical issue.  It is influenced and affected by the wider social determinants of health, social contexts, and people’s understandings of risk. We were encouraged that discussions about how to identify key sexual health issues and deliver an effective strategy focused on the need for more research, more data, and better collaborations.

In light of this, we were encouraged that IReSH – as a network –  could continue to make a valuable contribution to discussions about the next strategy and more generally to Scottish sexual health and wellbeing in our ongoing research collaborations and interdisciplinary discussions with clinical, community and policy partners. The current Framework is outcomes based and makes clear recommendations for NHS Boards, Local Authorities, Third Sector agencies and other stakeholders around particular approaches and ‘deliverables’ that support outcomes to be achieved. Where the current Framework outcomes focus on aspects of service provision and policy, we suggest that including research-related recommendations to both processes and outcomes would not only send a clear signal of the importance of research involvement but also facilitate cross-sector, interdisciplinary research collaborations that would ultimately help to achieve its goals.

We plan to continue our discussions and collaborations with partners across Scotland. Given the turn-out of attendees from Grampian, Fife and Highlands as well as Glasgow and Edinburgh, we plan to run events outside the central belt in future. We welcome contact from clinical, community and research partners within and outside of the central belt to continue these conversations and collaborations.  Please get in touch if you would like to find out more and get involved in our IReSH network activities.

Making the Case for HIV Literacy

With developments in self-testing for HIV and STIs, the expansion of drugs used for prevention and treatment and an increase in apps and digital technologies, sexual and reproductive health and wellbeing is rapidly changing. This means that the information people need to know about good sexual and reproductive health, where they can get it and how they can use it, is becoming more complex. It’s also not clear how people – and wider communities – can be best supported in accessing, understanding and using this information.

Continue reading “Making the Case for HIV Literacy”