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This Sickle Cell Life, co-production & academic research

Recruitment information for This Sickle Cell Life participants (Photo: Anne Koerber)

Our latest blog by DEPTH researcher Dr Sam Miles takes a break from coronavirus research to explore the themes of co-production and collaboration in our recently completed project This Sickle Cell Life. Read on to find out more…

Regular readers of this blog will know that our work in DEPTH (Dialogue, Evidence, Participation & Translation for Health) includes thinking about how we involve different communities in health research. Today I’m writing about This Sickle Cell Life, a recently completed qualitative research project that talks to young people about their lives and experiences of having sickle cell disease. I should add that some of what I’m writing about is based on team discussions and reflections. We’re writing this up in more detail with our co-authors and I’ll keep you posted on how it progresses.

I got involved in This Sickle Cell Life with Professor Cicely Marston and Dr Alicia Renedo when I started here at LSHTM in 2017. Funded by the National Institute for Health Research (NIHR), the project explores how young people experience transitions in moving from paediatric to adult healthcare services. This includes for example how our participants experience GP surgeries, scheduled hospital visits or unscheduled (i.e. emergency) trips to A&E. We also explored the personal and day-to-day experiences of young people living with sickle cell disease. We were aiming to answer questions including: What is the relationship between a young person with sickle cell and their doctor, and how does this change if you move away from home for college, university or work? And why do young people with sickle cell sometimes delay going to the emergency department when they have a sickle cell pain crisis? (Read this excellent overview by Sickle Cell Society for more on pain). We then cast the net wider to think about family, school, sex and relationships.

Our aim was to offer a much-needed sociological picture of how a young person with sickle cell navigates their life and their future, to mirror the more extensive clinical and quantitative research that has been published about the condition. That’s not to say that sickle cell research is exactly a crowded market – Professor Simon Dyson, who has made brilliant sociological contributions over many years, has rightly noted the lack of sickle cell research compared to other chronic health conditions, and how social, economic and ethnic determinants play into this marginalisation:

‘…impairment is primarily socially created by environmental factors, consumption patterns and accidents and not by genetic disorders.’ (Dyson 1998: p.123).

sicklecells - Wikipedia commons

Sickled cells (Photo: Wikipedia Commons)

Co-production

Fieldwork was already expertly wrapped up by Alicia when I joined the project, but I got to be part of the really interesting results analysis, discussion and dissemination work, including an engagement event with the public which in turn led to some fantastic community projects of its own. You can read more about the work here, but what I’m going to focus on in this blog was the role of ‘co-production’ in the project: put simply, that means working with different ‘kinds’ of people to produce research that is a collaborative effort. Co-produced research recognises that expertise is held by a range of people rather than only the ‘usual suspects’ (in this scenario, academics or clinicians). Advocates of co-production hope that the research findings developed are more rounded-out and take into account the ‘embodied’ knowledge of people who are living the journey themselves (see Renedo et al., 2018 for more).

One of the distinctive features of This Sickle Cell Life was that it was co-produced with two young sickle cell patient experts and a sickle cell parent/carer expert from the outset. All three have extensive knowledge of sickle cell and life with sickle cell, and already advocate for healthcare improvement in their own lives. They were involved long before I was – right from the project planning and application stage before funding was granted, in fact. They were also paid for their time. Partnering with these three experts added a very important facet to the research we conducted. There is a lot of talk in public health research about ‘PPI’, or patient & public involvement with healthcare. In the NHS, the motto ‘nothing about me, without me’ represents one way in which patient involvement is rationalised. Funders and grant-giving bodies are (rightly) keen to see meaningful involvement with the communities (sometimes also called beneficiaries) who are most relevant to the research being done. Co-production can also shine a light on the power imbalances that often happen in a traditional researcher-participant relationship in social sciences research which can reinforce all sorts of unhelpful hierarchies and prejudices.

SickleCell-futures- emergency dept
Documenting the participatory dissemination event for This Sickle Cell Life (Photo: Anne Koerber)

In our project, we agreed with our patient experts that it was particularly important that their voices were heard, because they contributed expert knowledge of their bodies and their own health conditions, as well as helping us at the findings stage of the research, highlighting themes that were most pertinent to improving healthcare environments for people with sickle cell. We further argued at every stage (to colleagues, institutions, sceptics – anyone who would listen basically) that our involvement processes needed to be considered, balanced, and properly thought-through – lip-service involvement doesn’t help any party and it is not in the spirit of meaningful participation. We wanted to amplify less-heard voices and hear stories from our patient experts and carer experts because their analysis of their own, and others’, experiences of sickle were invaluable. Our collaborators’ input contributed a different side to more traditional qualitative research; as a team, we worked to interpret the data and draw out the implications for practice.

The highlight of the project for me was not just the valuable findings that came out of 80 interviews with young people, which are research outputs of their own brilliantly managed by Alicia (which you can read for free here), but the process of co-producing research with patient experts and carers. I have discussed the idea of co-production a bit in my own digital technology and sexuality research, in which I (loosely) explored the co-production by both researcher and participant of a safe discursive space for covering sensitive topics in sex and sexuality in fieldwork research (which you can read for free here). But This Sickle Cell Life made co-production central from the start and throughout the full four years of the project; it is clear to me only now how truly different this way of working is, and the value it adds.

Attendees at the participatory dissemination event for This Sickle Cell Life (Photo: Anne Koerber)

The winding road to publication: How expertise is framed in academia

What was interesting was how our co-produced research outputs were received by peer reviewers for academic journals. Having learnt so much from our patient experts about how their experiences reflected what our results showed us about participants’ experiences, we invited them to write an academic article with us. We did this by discussing study findings with them and inviting them to discuss these themes with us as I took notes and recordings to write into a larger discussion. It was a long process, involving lots of conversations in cafes, on the phone and by email to coordinate our different experiences and expertise.

However, upon submission several reviewers critiqued what they felt to be overly personal accounts of sickle cell. Even having noted our co-produced efforts and celebrated this ethos, reviewers still picked out patient expert passages that they felt were lacking objective research – questioning the expertise of our co-production partners who were best placed to be reflecting on the study findings. Where our patient experts told us how their experiences chimed with those of the participants when it came to hospital care or chronic ill health or family issues, and I wove these reflections into our discussion section, reviewers felt this expertise was anecdotal or somehow unscientific – as if the rest of the qualitative dataset was by contrast unobjectionable or markedly positivist, when of course it wasn’t. We were in the paradoxical position of amplifying the expert knowledge of people with sickle cell and yet that knowledge being somehow too ‘real-life’.

We were in the paradoxical position of amplifying the expert knowledge of people with sickle cell and yet that knowledge was somehow too ‘real-life’.

I have sympathy for the reviewers, too, because despite the best will of a whole range of actors to more actively incorporate a range of knowledges into academic publications, establishment traditions prevail. This clashes with what I guess I would call the out-of-place-ness of equitable authorship, which synthesises a range of voices, including those which are non-establishment and may contribute in different (often refreshingly different) ways than are standard. None of this is to say that it wasn’t a valuable experience, but it was a long one. Critical Public Health and its editors did support our approach, with suggestions back and forth, and published what we hope will be the first of several co-produced articles (read it for free here).

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That leads us to one of the curious tensions in this kind of work – our collaborators are clearly experts, but they’re not academics. Does that matter? Well, it shouldn’t – especially given the UK NHS drive to centre patients and public at the forefront of research and healthcare involvement. And yet the process of publishing papers with our patient experts was not straightforward. It required different ways of working than what we were all used to, and different approaches – and that’s before we consider the lengthy journey we then had publishing our co-produced academic article, where roadblocks re-emerged.

I came to see that the key contribution of any author is their contribution to ‘the work’, and this can go far beyond typing up results or making an argument for changing UK healthcare practices in an academic article. Instead, it is about having conversations – in ways that ensure equity between all parties – and then using academics’ toolkits to package this co-produced knowledge whilst maintaining its integrity. For us, a more liberatory outcome would have been yet more unconventional than the finished piece. Maybe this would have taken us further from what makes an academic article an academic article. Well, you might argue, if you really want to publish more collaboratively, perhaps a different format would be better suited – a commentary, or an editorial, or a blog – and we are in the process of doing all those things. But this argument overlooks the ostensible openness of academic publishing to co-produced and public involvement endeavours. We’re all supposed to be embracing that ethos…aren’t we? There is work to do, it seems, in lining up expectations with conventions in co-produced research outputs.

Workshopping involvement at This Sickle Cell Life participatory dissemination event (Photo: Anne Koerber)

Final thoughts

As for the research itself, it’s been a fantastically valuable project for better understanding the health and social conditions of sickle cell. There are definitely ways we can further improve on our approaches to co-production for next time. It’s also not to say that our co-production work was straightforward or easy. On the contrary, it required constant communication between all parties to stay on the same page. But that ongoing relationship, and that time taken to gather views from around the table really ought to be how we always operate: with care, consideration and dialogue between all parties at all times. We came to define it as ‘slow co-production’, which I’ve blogged about before (we lay out what we think are its strengths in this article). It is only within the tight parameters of contemporary academic research contracts that this valuable, lengthy process feels like a luxury. I should add that the NIHR were very supportive of our approach and helped us build into our budget money to support exactly this kind of process, and they also gave us a generous timeframe in which to generate all this co-produced work.

It also encourages us to question what constitutes ‘knowledge’, who or what entities ‘hold’ knowledge (and you see it performed nowhere more starkly than in healthcare settings), and of the power imbalance between researcher and participant. Now I think twice before internalising the status quo of privilege and position in knowledge-holding (and knowledge exchange). I think more about how practical experience informs knowledge – or is overlooked by systems of knowledge and knowing – and who actually gets a seat at the table in supposedly collaborative endeavours. Cicely and Alicia have written about all of this and more, and you can read this work here, here and here.

Pursuing co-production helps us recognise the importance of prioritising equitable social science research that values all voices equally and recognises a range of expertise, rather than relying on the (often colonial, socially-structured, privileged) expertise bestowed – and often still prioritised – by academia.

Some of the This Sickle Cell Life collaborators (Top row L-R: Patrick Ojeer, Ganesh Sathyamoorthy, Sam Miles, Nordia Willis, Alicia Renedo, Andrea Leigh. Bottom row L-R: Cicely Marston, John James, Siann Millanaise. Photo: Anne Koerber)

This Sickle Cell Life was funded by the National Institute for Health Research Health Services and Delivery Research Programme (project number 13/54/25). The views and opinions expressed therein are those of the author and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.

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Sex is biological and gender is social – right?

Recent social media debates have shown that misunderstandings about ‘biological sex’ are common. In our latest blog, DEPTH Director Professor Cicely Marston discusses how simplistic ideas now circulating about biological sex miss the mark – and why it matters. 

Photo by Liv Bruce on Unsplash

Isn’t it the case that biological sex can only be binary – that you can only be biologically male or biologically female? And why does it matter anyway? In this blog I’ll discuss why biological sex is more complicated than many people think.

A popular way to explain the concept of ‘gender’ is to say that ‘sex is biological and gender is social’. This can help get the idea across that gender is ‘social’ – that is to say, it is something created by people, involving things like expectations, behaviours, and beliefs about masculinity and femininity. It’s true that gender is indeed social, but this leaves the idea that ‘sex is biological’ unexamined – and in some aspects in fact, ‘biological’ sex is social too.

But how can ‘biological sex’ possibly be in any way social? The basic thing to understand is that categories and labels – even words themselves – are social. For instance, if I call something a table you will know roughly what I mean. The table is real, material, and can vary: for example being made of different materials, in different sizes, and so on. We agree as speakers of the language roughly what we mean by “table”. 

Photo by Abel Y Costa on Unsplash

All the word “table” reflects is what we have decided, collectively over time, counts as a table. E.g. a table generally has legs, but not always the same number. It might be raised high off the floor, or be low. Through usage, all that diversity comes to be labelled with the same word “table”. 

When differentiating tables becomes socially important, language adapts, and the word “table” might be qualified (“occasional table” or “coffee table”). 

In the same way, “biological sex” is what we conceptualise, as a society, as “biological sex”. It is a label used to describe a collection of indicators, biologies, and anatomies. Indicators (e.g. chromosomes, gametes), that have changed over time and with scientific discoveries. It’s not a failsafe way to know what a particular individual’s biology is in every case.

This is why we can say that the biological sex binary is socially constructed– biological sex as male or female is a shorthand for categorisations of the material world that we find useful.

Photo by hessam nabavi on Unsplash

To take the most obvious example, many people see a “biological” binary in genital shape, yet this is an imperfect heuristic. (Content warning: genital cutting mentioned below). In many places, babies are assigned to the category “male” or “female” based on the shape of their genitals at birth. However, individuals may have a genotype that appears to “contradict” their assigned sex, or that in other ways doesn’t match the simplified XX vs XY that we learn at school. Unsurprisingly, people who assert that biological sex is binary seem to offer varying and sometimes contradictory biological markers that they claim divide everyone in the world neatly into two categories. Is it chromosomes? Gametes? Testosterone levels? Genital appearance? Nobody seems to be sure. 

“Biological sex” is a construct that helps our highly gendered society to categorise and label others.

“Biological sex” is a construct that helps our highly gendered society to categorise and label others. But why bother? The sex binary has major social significance (so much so that children with genitals less easy to read as male/female may be subject to genital cutting), and people who do not present in line with the sex they were assigned at birth, or who are not read as clearly “male” or “female”, continue to experience social disapproval, discrimination, and violence.

The idea of “naturalness” or the intrinsic/immutable binary nature of “biological sex” is important socially too. If the binary is “natural” or “biology” there’s nothing we can do about it, and departures from the typical become “disorders” rather than simply variation. Similar ideas also underpin arguments that differences (and inequalities) between men and women are biologically determined and so cannot be overcome. 

The biological sex binary oversimplification does particular harm when it is weaponized to vilify or discriminate against individuals or groups who are deemed not to fit such as people not easily read as “female” or “male”, and when backwards logic is used to try to gloss over discrimination and vilification by representing it as simply a consequence of the “natural” order of things. 

To summarise, “biological sex” involves not only the material but also the social. The crucial point is that the idea of a strict and immutable binary is socially constructed. The concept of “biological sex” is not inevitable because we have bodies, it is a response to how we see those bodies and how, as a society, we want to divide them up into categories. So the whole argument about gender and sex binaries is not an argument about science – however much people want to present it as one – it is an argument about classification and how we as a society choose to label people. Biological sex is social as well as material: and that matters.

Photo by Luca Vavassori on Unsplash

What do you think? Thoughts, questions – and answers – are, as ever, welcomed in the comments section below this blog.  (NB: If you’re reading this article on the DEPTH blog mainpage, click on the title of this post and comments will open at the bottom).

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Oh, What Do You Do To Me? the City says to Tinder

Happy new year! We are welcoming back our readers with this new blogpost by DEPTH researcher Sam Miles, who was recently invited to be interviewed about sex, technology and cities for the Urban Political podcast. Read on to find out how it came about… 

Sam: As well as working with my DEPTH colleagues here at LSHTM on sexual and reproductive health and rights (SRHR) for marginalised populations, and on the voices and experiences of young people with sickle cell, I have for a while now researched the relationship between sex and sexualities, digital technologies, and space. It’s work that I started for my PhD in 2013 and every year the themes it throws up feel even more relevant – how people find social or sexual relationships, how personal safety operates online and offline, what community means for LGBT+ people, and how we integrate (or don’t integrate) technologies into our daily lives.

I was recently invited by The {Urban Political} podcast to give an interview on dating apps and urban geographies. The {Urban Political} produces podcasts on ‘contemporary urban issues with activists, scholars and policy-makers’ that aim to advance our understanding of urban environments and how we might make them more democratic. They wanted to discuss my research on the relations between online dating apps and the production of urban space, especially with regards to sex and sexualities. I said yes because I was so intrigued by the questions presenter Dr Markus Kip posed:

Do apps like Grindr and Tinder make the city a more loving place? Do they make dating more safe for women or trans people? And do they cohere greater acceptance of queer cultures, or the opposite?

These are important questions. When put to you by someone not in your head, as it were, they have the helpful effect of sharpening focus on what is really at stake when it comes to the reality (and future) of digital technology and the welfare of sexual minorities.

People’s lived experiences are important. Thinking about the consequences of changing physical environments through the use of dating and hook-up apps beyond simplistic readings of ‘good’ and ‘bad’ offers us a real opportunity to think critically about what these platforms mean not just for individual users, but more widely for society, community and geopolitics.

urban politicalThat’s not all: in the podcast we also discuss what app companies do with the data that users provide (whether willingly or unknowingly), and what ethical boundaries are being tested in this kind of data sharing – as well as the ethics of app use itself. I’ve argued before that locative media technologies have grown at such a rapid pace that mutually-agreed social codes for use are yet to catch up with the development of these sophisticated platforms, which can lead to clashing expectations between users. I believe these (perfectly valid) tensions will be replicated and amplified across a wide range of social networks and ‘smart’ technologies in the near future as digital technologies become progressively more integrated into our daily lives.

As for the question ‘what needs to happen at an individual, collective or technological level to make online dating more useful or pleasant?’, there are any number of answers, and for me none of them are definitive. It’s become clear over recent years that dating apps are not an alternative utopian world, free from the ugliness of ‘real’ life – numerous reports of racism (special mention for #KindrGrindr), femmephobia and fat-shaming on just Grindr alone exemplify exactly that. But maybe there is space for a future of sociality, solidarity and support for sexual minorities who network online. We already see these kinds of networks in action in queer organising, online communities, and support groups at various scales and in various guises. There is no reason why dating and hook-up apps cannot similarly be collectively co-opted to embrace more ‘promiscuous’ socialisation to combat loneliness, more political solidarity with a range of queer identities and livelihoods, and more support for sexual rights agendas, whether they be PrEP provision or sexual & reproductive health rights. We can make it a 2020 resolution, can’t we?

You can listen to the podcast here, and check out other Urban Political podcasts here. There’s plenty to choose from, from the Hong Kong protests to heritage vs. gentrification.

This article was adapted from Sam’s blog post on Sexuality & the city.

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Trip report: LSHTM Participatory research workshop at Kyoto University

In our latest blog post, DEPTH researcher Dr Alicia Renedo gives us an overview of her experience delivering a short course on participatory research at Kyoto University School of Public Health.

Kyoto streetscape. Photo: Alicia Renedo

The short course consisted of two full day workshops (day 1 Professor Pranee Liamputtong and day 2 Dr Alicia Renedo), which included a combination of mini-lectures, reflective discussions and participatory group work by students from Kyoto University. Research degree students from LSHTM also attended the course at Kyoto and presented some of their own participatory research projects

Professor Liamputtong from Western Sydney University delivered an engaging session on the theory and methods of PAR (participatory action research). PAR emphasises involvement of participants in the research undertaken and encourages participants to shape the research undertaken. The day started with an inspiring introduction into the philosophy behind PAR, which drew upon the pioneering ideas of Brazilian educator Paulo Freire. Students learned about the importance that Freire’s work has had on the theory and practice of participation for social change and health improvement. In particular, Professor Liamputtong challenged students to think about how Freire’s concepts of ‘radical love’ and ‘conscientization’ can contribute to more equitable research. This is a type of research that challenges the status quo by engaging ignored and silenced voices and addresses the problems marginalised communities identify as central to their everyday life.

Professor Liamputtong contextualised PAR within the wider debate about decolonising research methodologies. She drew on Linda Tuhiwai Smiths’ work to make an excellent case for the need to stop conducting research that takes away the knowledge and livelihoods of communities and suppresses their identities.

This introduction to the theory and philosophy of PAR was followed up by an overview of different creative PAR methodologies, from body-mapping to photovoice. We also learned about the personal skills PAR researchers need to develop; reciprocity, self-reflexivity, respect, self-awareness, humility, and compassion amongst others.

On the second day, Dr Renedo encouraged students to think critically about participation in health. She gave on overview of the body of work she’s developed with Professor Cicely Marston focused on understanding how community participation and patient involvement in healthcare research works in practice: what works, why and how? She started the day with an introduction to work they have developed on theorising participation and using participatory approaches in health research. Their work has addressed important evidence gaps on participation in health by developing critical theory on undertheorized aspects, which are also neglected in practice. In this first session, students learned about the importance of space in making participation successful and inclusive, and about the role of temporal, social and material aspects of participatory space in influencing participants’ ability to negotiate their rights for quality health and to mobilise for better health.

In this session, students also learned about how social relationships and research practices at the core of participatory research shape the identities of participants, that is how participants see their role and capacity to influence. Dr Renedo closed this first session with a discussion about the social production of new forms of knowledge through participatory processes; what happens when the technical knowledge of researchers and healthcare providers interacts with the knowledge brought by communities?

In the second session, Dr Renedo stimulated group discussion around the guiding principles for participatory research. She introduced students to guiding principles for ensuring participatory research is ethical and inclusive to deliver bottom-up solutions for the communities we are working with. Students were tasked with planning a participatory research project with vulnerable communities. Before they started, Dr Renedo warned students about some of the potential risks of participatory research, for example, community disengagement, mistrust and reinforcement of pre-existing inequalities and power hierarchies.

Kyoto University campus lunch. Photo: Alicia Renedo

In the afternoon, Dr Renedo presented a case example of DEPTH participatory research project co-produced with sickle cell disease (SCD) patient advocates (patients with SCD and carers of patients with SCD). Her session was followed up by presentationson PAR conducted by LSHTM research degree students: Asmae Doukani, Stefanie Fringes and Chris Obermeyer.

Asmae Doukani gave a talk about her participatory research journey and reflected on her personal learnings about meaningful user involvement in the development and evaluation of digital mental health interventions. Chris Obermeyer gave an overview of his grassroots participatory research involving communities in improving PrEP promotion in Ukraine. Stefanie Fringes helped students think critically about how to do participation with young people as research partners in the context of HIV in adolescent health.

Alicia would like to give a special thanks to Ayako Kohno and Teranee Techasrivichien, from Kyoto University School of Public Health, for inviting us to participate in the workshop. She adds:

“I was truly inspired by all presentations and by Kyoto University students’ critical insights into participatory research. The workshop stimulated truly collective learning. I look forward to continue conversations and see how the students can draw on the learnings from the two-day workshop in their own research.”

A recording of the two-day workshop will be available via Kyoto University’s website. We will add a link to these resources when they are ready.

Kyoto streetscape. Photo: Alicia Renedo

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Can sexuality education can help prevent partner violence?

Today’s blog is very topical because LSHTM doctoral researcher and DEPTH member Shelly Makleff has been attending the SVRI Forum  2019 in Cape Town this week to present a co-produced project by LSHTM, IPPF/WHR and Mexfam that highlights the potential of sexuality education as a strategy for preventing partner violence. DEPTH director Professor Cicely Marston is co-PI. Her presentation is entitled “Preventing intimate partner violence among  young people – a qualitative  study examining the role of comprehensive sexuality education”. Now let’s hear a little more about the project…

We wanted to know if sexuality education can help prevent partner violence. The London School of Hygiene and Tropical Medicine (LSHTM) partnered with IPPF/WHR in New York and Mexfam in Mexico City to try to find out. We have promising results that we’ve begun to publish. Below we share some of our key findings.

Mexfam taught a 20-hour course to high school students on a weekly basis for one semester. We evaluated this course through a longitudinal study with nearly 300 students. Using observation, surveys, interviews, and focus groups, we found four main ways in which sexuality education seems to contribute to intimate partner violence prevention and response.

First, encouraging critical reflection. The course provided a space to share experiences and debate beliefs about violence. For example, questioning whether jealousy and possessive behavior were signs of love, or rather, forms of violence. One young woman said:

The health educator made it very clear to us that if your partner really loved you, they would accept you as you are. They wouldn’t be telling you ‘don’t dress that way’ or ‘I don’t want you to talk to him.’ That is a type of violence.”

Participants also said the course helped them rethink gender norms. One young man told us:

My classmate said that the man has to work, and the woman should stay in the house. It made me think. I think you need to give freedom to both people in a relationship.

Second, building assertive communication. Participants said they became more comfortable talking about relationships and sexuality as the course progressed. They also shared the information from the course with friends and family, intervened in violence around them, and some left possessive relationships.

Third, promoting care-seeking behavior. Health educators emphasized the right of young people to receive care, and provided information, support and referrals. Students told us they felt more prepared to seek care if it became necessary. Indeed, the percent of participants who knew where to seek support for violence more than doubled over the semester.

 Fourth, ongoing training and support to health educators. This is crucial so they are prepared to address conflict in the group, encourage critical reflection, and create a safe space for discussion.

Copyright Mexfam, 2019

Based on the three-year project in Mexico, we have recommendations for implementation and policy that can be found in our briefing paper. Here are some highlights:

  • First, communication with participants can continue after an intervention ends, to encourage access to support and care in the long term.

  • Second, sexuality education should engage teaching methods and participatory activities relevant to participants’ lives.

  • Third, such courses should aim to shift gender norms, avoid heteronormative bias, and highlight forms of non-violent behavior.

  • Finally, school authorities should formally support such interventions and ensure that teachers and other staff are trained to address school-based violence.

In conclusion, we suggest that relatively short-term sexuality education has real potential to help prevent intimate partner violence. The findings reinforce the importance of working in schools – which are strategic both as settings for violence and for its prevention.

You can read more about our findings here:

Makleff S, Garduño J, Zavala RI, Barindelli F, Valades J, Billowitz M, Silva Márquez VI, Marston C. “Preventing intimate partner violence among young people – a qualitative study examining the role of comprehensive sexuality education.” Sexuality Research and Social Policy (2019).  https://doi.org/10.1007/s13178-019-00389-x

Briefing paper: “Preventing intimate partner violence among young people– The role of comprehensive sexuality education.” Advancing Learning and Innovation on Gender Norms (ALIGN) (2019).

Stay tuned for further academic papers and a series of three policy briefs, the first of which can be found here: https://www.ippfwhr.org/wp-content/uploads/2019/10/policybrief.pdf

You can also follow Shelly on her new Twitter account, and check out our ongoing DEPTH research on Twitter.

What do you think? Thoughts, questions – and answers – are, as ever, welcomed in the comments section below this blog.

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Why neglect of STIs and infertility could be undermining family planning programmes

 

In a new blog comissioned for BMJ, DEPTH team member Professor Cicely Marston and Dr Suzanna Francis argue that neglect of STIs and infertility undermines family planning programmes worldwide.

Copyright: LSHTM

Why do people still not use effective contraceptive methods?

One reason is that many women and their families in low- and middle-income countries fear the most effective contraceptives can cause infertility.  A conventional response to this is that people simply need more information to put them on the right track – that women who, for instance, are using injectable contraceptives simply need reassurance that any fears of infertility are unfounded.

But what if the risk of infertility in some lower income countries is all too real – but the real cause is hidden? This, our paper argues, may well be happening with infertility caused by undiagnosed, asymptomatic STIs.

Chlamydial infection in particular is an important cause of tubal factor infertility. So infertility caused by undetected, asymptomatic chlamydia may well be widespread in areas where it is prevalent – including among women who have recently stopped using contraceptives.

All of this may contribute to a sense that it is the contraceptives causing the infertility – simply because their use coincides with less or no condom use, and undetected STI infection.

An indicator of the scale of the threat STIs pose to women’s fertility comes from recent work (here and here) in South Africa, showing a major, uncontrolled chlamydia epidemic among young people. It seems reasonable to assume that this problem, and any resulting infertility, is not confined to one country.

Copyright: LSHTM

We hope our commentary will encourage more research into the global prevalence of STIs and the degree to which the associated infertility could be undermining people’s trust in family planning programmes. Counterintuitively it is possible that by addressing fertility problems in programme settings, fertility may even be reduced as more people trust that they can use contraception without experiencing devastating infertility.

More broadly, we call for research and programmes that address women’s own priorities as a starting point to develop sexual and reproductive health programmes that are more attractive and win people’s trust.

To address complex problems, programmes and research must be co-produced with the communities concerned, and break down disciplinary boundaries such as those between family planning and STI prevention and treatment.

Crucially, programmes must address women’s right and desire to control their fertility in the fullest sense – in other words having children when they want them as well as avoiding births when they do not. In high fertility settings, infertility – so often personally devastating and socially stigmatising for the people affected – may not even be considered a problem by funders. This needs to change.

Copyright Daniel McCartney

by Cicely Marston, DEPTH research group (Twitter), and  Suzanna Francis

This post was first published online at BMJ Sexual & Reproductive Health on September 26 2019.

You can read our blog in BMJ Sexual & Reproductive Health, open access and free to read here . You can read the full paper here.

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Exploring locative dating technology and queer male practice-based identities

In our latest blog, DEPTH researcher Sam Miles discusses his latest publication for new social science collection The Geographies of Digital Sexuality. Sam’s chapter explores the practices of men seeking men on online dating apps and argues that these practices can be categorised into different identities, or ‘typologies’, of user.

 

geogsI was invited last year by Andrew Gorman-Murray and Catherine J. Nash to write a chapter for their new book, The Geographies of Digital Sexuality. I thought for a long time about what to write about. My work has been moving over time from queer male technologies and fieldwork ethics to sexual behaviour, and from there to sex and sexuality more generally, as our new ACCESS project at London School of Hygiene & Tropical Medicine develops. I’m still fascinated by technology, sex and relationships, but looking globally at some of these relationships in very different contexts – marginalised populations, challenging settings, and complex geopolitical environments in the global South.

We know that gay and bisexual men in Europe and north America are a comparatively privileged sexual minority (although MSM – men who have sex with men, but don’t identify as gay or bisexual – are often less privileged), especially compared to lesbian, bisexual, and transgender people. The lives and experiences of a wider range of people need further amplification – especially given common misunderstandings about technology use in socioeconomically disadvantaged settings; people are often surprised to hear that smartphones are used almost everywhere in the world. This includes within seriously deprived settings, where it may be the single most important object for a family’s livelihood or income. That does not mean it is not also used for communicating, partner-seeking, or pornography in any number of these settings.

Photo by Martin Tod, licensed under CC BY-NC-SA 2.0

Nevertheless, one of the things that people still ask me a lot about when they hear about my PhD and its research into smartphone dating apps is about people’s behaviour online: things that people complain about seeing again and again. It’s as if there are a list of the ‘usual suspects’ to be wary of when using dating or hook-up apps, from the ubiquitous time-waster (‘talk, talk, talk, and yet never agrees on concrete plans to meet up) to the catfish (‘Amazingly good looking but interested in me!’, or ‘keen to meet but there’s something weird about the photos’). It provoked new questions based on online identity: Could we sketch out different ‘types’ of dating app user? Would those ‘types’ translate between queer and heterosexual? Do different apps host different types?

My qualitative fieldwork suggested that male-male apps contained ‘types’ that were far more specifically defined, and more commonly recognised by a whole range of users, than anything I was reading about being theorised elsewhere, so I looked into it further and developed three ‘types’ of user: the Embracer, the Timewaster, and the Minimalist. Whilst the vignettes I write in the chapter are fictional, they are amalgamated from a range of real-life users I spoke to, augmented by the profiles of other users that my participants discussed repeatedly (and usually in strongly positive or strongly critical ways). These profiles build an interesting picture of different modes of use for a market-dominant app like Grindr or Tinder. These ‘types’ of user, and the strong feelings they provoke in others, also speak to an argument I bang on about a lot: that the social codes of these GPS-enabled apps have yet to catch up to their digital sophistication. The result is user enthusiasm for what these platforms can offer in meeting new people – especially important for sexual minorities – tempered by real frustrations about other people not taking the app seriously, or taking it too seriously, or just not reflecting the user’s desired path to encounter.

Even more fascinating perhaps is the finding that the Timewaster – an app user who is keen to chat, seemingly reciprocates interest, and yet keeps postponing a date or other physical meeting, seemingly content to exist only in cyberspace – is almost universally criticised by users. Yet many of these same users sometimes exhibit precisely this behaviour themselves. This paradox serves to emphasise that we must not think of ‘types’ or user typologies as somehow fixed, but instead flexible categorisations that users might adopt, consciously or not, at different times in their app use over time. You may not see yourself as a time-waster because it’s not a trait you think is very attractive, but that doesn’t mean that sometimes you’re not that person to another frustrated user.

dating app.jpg

The picture built up by this qualitative work is one of seriously mixed feelings. Users characterise their time using online partner-seeking apps with as much ambivalence as enthusiasm. Thinking more about what the categories I have sketched out above might mean for online partner-seeking, and how social and/or sexual connection happens (or doesn’t happen) online can help us to think about larger questions far beyond the scope of dating apps. These include who we are when we’re online, and why that still feels ‘removed’ or disembodied from what should by now be a more taken-for-granted, hybridised digital-physical reality.

The chapter is called ‘Going the Distance: Locative Dating Technology and Queer Male Practice-Based Identities’ and you can read it here, or view the full book listing here.

This post has been adapted from Sam’s original blog at Sexuality & the City.

What do you think? You can comment below (if you’re reading this article on the DEPTH blog mainpage, click on the title of this post and comments will open at the bottom). We’d love to hear from you.

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Let’s talk about sex

How do researchers go about interviewing people about sex and sexualities? To what extent do we – or should we – share our own experiences? And what kind of ‘spaces’ do these highly personal conversations fit into?

DEPTH researcher Dr Sam Miles was invited by the academic journal Area to write a blog for their outreach website Geography Directions, based on his recent article ‘“I’ve never told anyone this before”: Co‐constructing intimacy in sex and sexualities research’. In the blog, Sam explores the ethics of fieldwork in sex and sexualities research. Have a read… 

The (in)famous male-male dating and hook-up app Grindr recently celebrated its 10th birthday. To mark the anniversary, a whole range of articles have cropped up variously celebrating and lamenting Grindr’s influence across the world (by which I mean literally across the world – it counts nearly 4 million active users across 234 different countries (Grindr, 2019)). What makes this generation of mobile phone matchmakers different from the online platforms that went before them, for example Gaydar, match.com, Yahoo chatrooms? Apps such as Grindr are GPS-enabled, which enables users to ‘rank’ other users of the app by proximity, ensuring that potential matches can be discovered and introduced in real-time across physical space.

Reflecting on Grindr’s first decade, The BBC identifies a ‘rocky relationship’, whilst VICE magazine explores Grindr’s relationship with identity fraud and drug-based ‘chemsex’; meanwhile, Gay Times reports that 56% of Grindr users believe they can find true love on the app. Whatever your opinion on it – and there are many – there is no doubt that this mobile phone matchmaker, along with its competitors Hornet, Scruff & Jack’d, has had a profound impact on gay and bisexual communities. These apps have also opened up new avenues for men seeking sex with men (MSM) who for whatever reason – familial, cultural, or religious – do not identify as gay or bisexual.

Grindr Stock image

The bigger question raised by these recent articles seems to be: how do dating and hook-up apps impact on same-sex and queer relationships today? This question cannot be answered by quantitative usage data alone. After all, we know that high usage does not necessarily mean high popularity. We need to explore peoples’ real life experiences in order to more fully understand the impact of dating and hook-up apps on same-sex and queer relationships.

I decided that the best way to get a detailed understanding of how these apps influence sexual and social behaviours would be to interview users about their experiences online, offline, and in the ‘hybrid’ space bridging the two, where virtual introductions result in real-life encounters. My doctoral research revealed some important findings: (1) that dating and hook-up apps play a significant role in how men now meet other men, especially within wider debates about the ‘death of the gay bar’, and (2) that the relationship between mobile phone dating app users and the people they meet can be awkward, with social cues yet to catch up to the sophistication of the technologies in use.

The sensitive nature of the research topic meant that there was an array of ethical and practical challenges for me to grapple with during my doctoral fieldwork. In my recent Area paper, I reflect on some of these challenges and explore how researchers and participants can work together to create a meaningful space that not only enables data collection, but facilitates honest and valuable conversation. I consider what the researcher’s responsibility should be for a participant’s safety in this discursive space. I also reflect on how ‘involved’ I should be as a researcher. I’m a person, not a robot, and several decades of feminist research has already explored the strengths and issues bound up in bringing ‘yourself’ into the research field (for example, see Bain & Nash (2006) and Smith (2016)). But the opposite extreme of the objective, positivist robot researcher is the inappropriately involved one, a role which would be both institutionally unethical and personally unacceptable. I therefore identified my own boundaries as well as the participants’s boundaries. The result was a co-constructed discursive space that we worked together to construct, perhaps surprisingly, in totally public venues and in one-off, hour-long interviews rather than more private or longer-term meetings. These were not ‘intimate’ spaces in a traditional sense, but nevertheless the space-within-a-space that we constructed invited app users to speak about highly personal experiences, some for the first time ever.

I also make the case for the using public places for staging sensitive conversations. The assumption that private matters cannot be discussed in public requires a rethink. Public spaces like libraries or cafes enfold within them more private spaces – not just actual booths or nooks, although these can contribute – but I’m thinking here about more conceptual spaces. These are built simply via one-to-one, in-person conversation in a space where a hubbub of background talking, or the hiss of coffee machines brewing, provides a backdrop to conversation that can be very productive.

Finally, when it comes to dating and hook-up apps in particular, I suggest that people are particularly keen to share their views because the social norms of dating app use are so complex and still so poorly understood. For lots of people online dating remains taboo. In this context, the chance to share their thoughts, feelings and experiences when it came to the digitally-introduced, physically-involved relationships these platforms offer may have been liberating.

Love dating apps or hate them (or both), what I hope the article communicates is that we need to talk more with users about the ways in which technologies impact on our personal lives, in order to think about the social codes developing from their use that will inform a whole range of wider contexts.

What do you think? Let us know by commenting below…

References:

Bain, A., & Nash, C. (2006) Undressing the researcher: Feminism, embodiment and sexuality at a queer bathhouse event. Area, 38, 99–106. https://rgs-ibg.onlinelibrary.wiley.com/doi/pdf/10.1111/j.1475-4762.2006.00663.x

Damshenas, S. (2019) 56% of Grindr users believe they can find love on the app, study finds. Gay Times. Retrieved from: https://www.gaytimes.co.uk/community/119691/56-of-grindr-users-believe-they-can-find-love-on-the-app-study-finds/

Fox, L. (2019) 10 years of Grindr: A rocky relationship. BBC News. Retrieved from: https://www.bbc.co.uk/news/technology-47668951

Grindr. (2019) Grindr.com. Retrieved from: https://www.grindr.com/

Miles, S. (2017) Sex in the digital city: location-based dating apps and queer urban life. Gender, Place & Culture, 24, 1595-1610: https://www.tandfonline.com/doi/abs/10.1080/0966369X.2017.1340874?tab=permissions&scroll=top

Miles, S. (2018) Still getting it on online: Thirty years of queer male spaces brokered through digital technologies. Geography Compass. e12407. ISSN 1749-8198 DOI: https://doi.org/10.1111/gec3.12407

Miles, S. (2019) “I’ve never told anyone this before”: Co‐constructing intimacy in sex and sexualities research. AREA. https://rgs-ibg.onlinelibrary.wiley.com/doi/full/10.1111/area.12550

Smith, S. (2016) Intimacy and angst in the field. Gender, Place & Culture, 23, 134–146.

Staples, L. (2019) Grindr Users Talk Highs and Lows After Ten Years of the App. VICE Magazine. Retrieved from: https://www.vice.com/en_us/article/59x83d/grindr-users-talks-highs-and-lows-after-ten-years-of-the-app-1

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Protecting ‘thinking space’: our experience of using calendar time blocking

In our latest blog, DEPTH team members Professor Cicely Marston and Dr Alicia Renedo explain how we actually get thinking (and writing) done when everyone wants our time

Have you tried time blocking to deal with the endless onslaught of tasks in academia? It works for us. We’d love to hear about other experiences in the comments too.

Universities are sources of endless admin and bureaucratic reporting processes (e.g. supervision contact points for overseas students, online appraisal systems). The ever-increasing managerialism and research-related admin work (ethics applications and funding reporting systems) leave little time for doing research and knowledge production activities. It is very difficult to free up time to engage in in-depth academic activities such as data analysis, and writing.

To protect ‘thinking space’ and to manage work overload, we use a very simple tactic: calendar time blocking. We use this in two ways:

  1. To ensure we complete all of our responsibilities (as a task checklist) 
  2. To manage our time and energy better.  

Calendar time blocking helps us meet deadlines, but also helps plan for the different types of knowledge, levels of concentration and time needed for specific tasks. For instance, in-depth conceptual work and theory development, writing, and analysis require extended periods of time and can be jeopardised by interruptions such as admin requests, emails and meetings. It works simply by treating each task as requiring an appointment to complete. You estimate how much time you will need to complete the task, and make an appointment accordingly in your calendar.

Alicia: I block Fridays as a writing day, and try to block 2-3 day per week when I need to do more intensive analysis and writing. I have chosen Fridays as a writing day because this is when there are fewer emails and requests for meetings. Because some admin work requires prompt responses, I leave tasks such as emails and form filling for times of the day when my brain works less efficiently and just before a break (e.g. lunchtime and/or end of the day before leaving the office). I try to organise meetings around these times too, and when possible I try to concentrate meetings on the same day(s) of the week. For those days full of meetings I put fewer in-depth tasks in the calendar for the little remaining time available.

Cicely: I increasingly block almost every task, even fairly small ones, in my calendar. It can be alarming to see the reality of how much time is used up in management and admin. I have several research projects that I am either leading or contributing to, so I need to have leeway in my calendar for unexpected or overrunning tasks. For this reason I only block four days (usually Monday to Thursday) in my calendar – inevitably I have spillover into the ‘spare’ day and it saves me having to rejig all the time blocks in subsequent weeks. In the unusual cases where there have been significant delays that will affect future tasks, time blocking means I can more easily see if I need to rearrange non-urgent meetings or tasks so that I can still meet deadlines, or whether I need to give advance notice that I might be late completing a task. I like it when others use time blocking because they can give me a realistic idea of when they can complete a task and I can plan my work accordingly. Writing this blog with Alicia has made me reflect that I should aim to have a weekly writing day as well as a ‘spillover’ day blocked in my diary.

Calendar time blocking helps us by protecting our thinking time; by helping avoid the situation where admin tasks interfere with the flow of ideas and reflective processes needed for in-depth academic work; and by stopping us quickly jumping into smaller admin tasks at the expense of dealing with more painful tasks, such as writing. It is easy to fall into dealing with tasks that can be completed quickly and avoid slower more in-depth ones which produce longer-term outputs.

Calendar blocking can also bring collective benefits. For instance, it helps when justifying to others why you cannot instantly respond to their requests. It can also help others organise their calendars – we often set our calendars to produce and deliver papers so that we coincide with the ‘free’ space in our co-authors’ time-blocked calendars. Time blocking also helps students know when they can access our support and this helps them plan ahead to deliver their writing work, with the assurance that we will send feedback on time.

Tip: In outlook, emails can easily be converted into appointments or meetings. Using this means you have relevant details in your time block ‘appointment’ when you work on the task (assuming you are time blocking using Outlook calendar), rather than having to go back and search for them.

Do you use time blocking? Any tips about how to do it better gratefully received in the comments!

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Consulting an ethicist is the least common way of seeking to resolve ethical dilemmas!

For our latest blog we are thinking about ethical issues in research. Here, DEPTH staff member Dr Catherine McGowan discusses some of the roadblocks to resolving ethical dilemmas in the public health field.

 

Ethical dilemmas are part of professional life. But how do we navigate these dilemmas successfully? How do we ensure that we are resolving dilemmas in a way that leaves us feeling as though we have taken the best possible course of action?

People regularly make difficult decisions in their daily lives and are accustomed to resolving ethical dilemmas based on personal reflection and consultation with family, friends, and colleagues. Resolving dilemmas in the workplace, for a public health professional, is different in the sense that decisions may affect the health and wellbeing of many people. For example, decisions about resource allocation – in a context in which the public need for services outweighs an agency’s capacity to deliver – can markedly reduce life expectancy in areas not receiving services. Making the best possible decision in such circumstances, one which promises the greatest common good, is often difficult. Yet recognising, understanding, and resolving ethical dilemmas is like any other technical competency. Training in public health ethics provides the basis for sound ethical decision-making, but how many public health professionals have received education or training in public health ethics? How often do public health professionals encounter ethical dilemmas? How do public health professionals approach complex moral dilemmas?

In our latest paper entitled Education, training and experience in public health ethics and law within the UK public health workforce we present the results of a survey of 562 public health practitioners in the UK. The Faculty of Public Health, the Royal Society of Public Health (RSPH), the UK Public Health Register (UKPHR) and Public Health England disseminated a link to an online survey asking about experience, education and training in public health ethics. Nearly 40% of respondents were public health consultants or specialists; the rest were registrars, academics, directors of public health, practitioners, managers, nurses or midwives. Over half of the respondents reported encountering ethical issues on a monthly, weekly, or daily basis whilst just under a third reported that their organisation had implemented mechanisms, adopted tools, or recommended resources to facilitate consideration or resolution of ethical issues. Interestingly, when asked to indicate how they go about resolving ethical issues the majority indicated that they resolve them in discussion with colleagues or on ‘personal reflection’. That is to say: the least common way of seeking to resolve ethical dilemmas was by consulting an ethicist!

We also asked respondents how dealing with ethical issues affects them: over half questioned whether they dealt with ethical issues in the best way and a quarter reported feeling anxious about dealing with ethical issues at work. Interestingly, many respondents indicated that they enjoyed the challenge of dealing with ethical issues. Unfortunately, relatively few respondents had received training in public health ethics.

 Moving forward, we believe there is a need to develop and support capacity among the public health workforce through the provision of education, training, guidance, and mentoring in public health ethics. Public health professionals should be equipped to make the best possible decisions in complex circumstances for the betterment of health, and wellbeing and equity.

Look out for our upcoming paper in the Journal of Public Health – it will be published as part of a thematic issue on public health ethics. We’ll post about it on our Twitter feed and DEPTH website, so look out for updates.

October 2019 UPDATE: The article is now published and available to view, free & open access to all. Check it out here at Journal of Public Health.

What do you think? You can comment below (if you’re reading this article on the DEPTH blog mainpage, click on the title of this post and comments will open at the bottom). We’d love to hear from you.