2021: A Year in DEPTH

DEPTH team members planning 2022 research

2021 was a busy year, for DEPTH and for researchers and communities worldwide. Here are some numbers that summarise our in-DEPTH work in 2021…


New research project, Routes: new ways to talk about Covid for better health. Focus on Gypsy Roma and Traveller communities, and migrant workers in precarious jobs. This participatory research is funded by the NIHR Public Health Policy Research Unit. The project responds to the Health and Security Agency need for urgent information on barriers and opportunities for improving health services relating to COVID-19 community prevention and response. Check out our brand-new webpage for more information. 


137 

Number of organisations and individuals contacted as part of our Routes project work, across mapping conversations, interviews, dialogue sessions and stakeholder conversations. 


Major funders for our participatory DEPTH research: UK Government FCDO (ACCESS: Approaches in Complex and Challenging Environments for Sustainable SRHR), NIHR (This Sickle Cell Life) and UK Government NIHR/DHSC (Routes: new ways to talk about Covid for better health. Focus on Gypsy Roma and Traveller communities, and migrant workers in precarious jobs). Across these projects, we are working in dialogue with communities as well as with policymakers, researchers and advocates. 


14 

Points in our preliminary guidelines for equitable academic authorship in collaborative health research. We built on good-practice guidelines from the International Committee of Medical Journal Editors (ICMJE), the British Sociological Association (BSA) and Committee on Publication Ethics (COPE) to recognise the specific needs of authors in co-production contexts, including research conducted with non-academic collaborators. You can read our guidelines, for free, here


Finalist nominations for the Royal College of Paediatrics and Child Health &Us ‘Voice Champion Award’. Dr Alicia Renedo and Dr Sam Miles were shortlisted for their work with children and young people, ‘championing their voices to inspire students and health workers at the London School of Hygiene & Tropical Medicine’. The nominations and shortlisting were run by young people. You can read more on our blog


Talented research degree students undertaking doctorates with DEPTH staff: Prima AlamCasey-Lynn CrowJulia FortierWeiqi HanErin HartmanMary MbuoMarthe Le Prevost (recently completed) and Maritza Lara Villota.  


1,278 

Total number of followers of our @DEPTH_LSHTM and our @ThisSCLife Twitter accounts. Check out our feeds out if you’re not signed up for daily updates, news articles and research findings. 


90 

Number of days we had to wind up a huge consortium project. ACCESS (Approaches in Complex and Challenging Environments for Sustainable SRHR) was axed without warning by the government in spring 2021. We nevertheless developed exciting outputs to share from our consortium work, available here. You can also read a summary of the project from our partners at IPPF (International Planned Parenthood Federation), here


2 

Strategy days to practice teamwork initiatives, discuss DEPTH priorities and plan our research strategy.  


5 

Total number of canine DEPTH team members. Gus and Ziggy are Sam and Laura’s puppies, while Bertie, Colin and Pepa are honorary doggie members!

Ziggy and Gus

We hope you enjoyed reading our ‘Year in 2021’. Watch this space for new developments in 2022…

DEPTH PhD student wins best poster at the 2021 Research Methods e-festival

Our latest DEPTH blog comes from PhD researcher Weiqi Han, supervised by DEPTH Director Professor Cicely Marston, with LSHTM colleagues Dr Shaffa Hameed and Dr Emma Slaymaker. Weiqi has just won best poster at the 2021 Research Methods e-festival for her work on using photo-elicitation to understand the lived experiences of sexuality of young people with physical disabilities in China. Over to you, Weiqi…

‘I really enjoyed my time at the 2021 Research Methods e-festival last month, hosted by the National Centre for Research Methods and methods@manchester. Around 80 sessions were held over five days, with more than 130 speakers offering diverse perspectives on the festival’s theme: innovation, adaptation and evolution of the social sciences. The e-festival was brought together by a common interest in interdisciplinary approaches within and across the various social sciences. It was web based and was highly interactive. Attendees could join sessions via live video streams, take part in community discussion boards and network with other scholars.

I was so excited to win best poster at the festival. Currently, I am in the qualitative data collection stage of my doctoral work. I am honoured and grateful for this recognition, and I hope that it draws more attention to studies on the intersection of sexuality and disability.

For many years, people with disabilities have encountered societal stigmatisation and oppression, which often causes them to suppress their sexual lives and sexuality. People with disabilities are often seen as asexual and thought to be incapable of embodying sexual emotions and desires. The transition from adolescence to adulthood is a time of instability, experimentation and exploration in various areas of life, most importantly in relation to sexuality. In the context of China, where this study will be based, 85 million people live with disabilities, and approximately 8 million of them are young people between the ages of 10 and 19 years.  Everyone has a right to sexual and reproductive health, and young people with disabilities should not be denied this inalienable right simply because of their disability.

The study seeks to explore young people (age 18–24) with physical disabilities’ qualitative accounts of their lived experiences of sexuality while transitioning to adulthood in China. Accordingly, a phenomenological approach to qualitative research will be utilised that focusses on the essence of the individuals’ lived experiences. Data will be primarily collected through photo elicitation interviews to centre the knowledge, voice, and lived experiences of young people with physical disabilities. 

People with disabilities are rarely given the opportunity to share their experiences and desires about their sexuality and intimate lives. Research on disability and sexuality cannot be carried out without the participation of people with disabilities. People with physical disabilities have almost always been represented in a negative light in the visual realm. To enhance the participant-led understandings of experiences of sexuality and disability, I decided to utilise a method designed to ‘give a voice’ to the participants and allow them to talk about their experiences. Specifically, I will use photo elicitation in conjunction with semi-structured interviews to gain a ‘phenomenological sense’ of the importance and meanings that the content of the photos holds for the participants while allowing them to relate and share their issues, experiences and concerns.’

Weiqi’s work station with her cat, Mia, keeping watch.

Thank you for your guest blog Weiqi, and we look forward to learning more about your project in this historically under-researched field. Watch this space!

As always, comments are welcome on this blog. You can also contact Weiqi for more information on weiqi.han@lshtm.ac.uk.

Who writes what? Responsible authorship recognition in co-produced research

DEPTH team members collating research themes

New term, new research! We’re very excited to publish our latest article: ‘Reimagining authorship guidelines to promote equity in co-produced academic collaborations’, open access in Global Public Health. This piece brings together our thoughts on academic authorship from our recent ACCESS project on sexual and reproductive health and rights (SRHR) for marginalised populations, with our thinking on knowledge co-production from the project ‘This Sickle Cell Life’, a sociological study of young people’s experiences of paediatric to adult healthcare transitions

The call for papers for a special issue of Global Public Health on ‘(Re)imagining Research, Activism, and Rights at the Intersections of Sexuality, Health, and Social Justice’ offered us the perfect opportunity to crystallise some of the discussions we had and are still having as a research team about health co-production, academic research, authorship, and social justice. We take collaboration and engagement very seriously in DEPTH here at LSHTM, and felt that established authorship guidelines, while excellent benchmarks for ethical research and publication practices, aren’t always fit for purpose when it comes to co-produced work with different stakeholders. As we reflect in our Discussion:

There are numerous structural barriers to full collaboration that have an impact on authorship. The structural barriers to collaboration in general can be revealed in decisions about authorship – they are highlighted in who makes authorship decisions, and who benefits from them, and the structures and conventions that support and entrench inequities and devalue collaborative in favour of competitive working. 

In light of these tricky contextual norms, we found numerous questions that needed unpacking: who is an author, and what do they contribute? When does a person’s place in the acknowledgements change to place on the author list, and when should it? How might we think more deeply about academic products and knowledge so that we do not inadvertently help supress voices that are already less heard? These voices are often less heard in academia because of the structures and customs of the academic system, so what impediments can we sidestep while acknowledging we still function within that system?

The result of our discussions is the article, which starts to explore how we might more explicitly pursue recognition of co-produced contributions to academic research. One way to hold ourselves and each other to account in equitable ways of working is through authorship guidelines, which we hope will prove useful as a jumping-off point for others engaged in collaborative work – especially with practitioners, activists, or non-academics, whose contributions and knowledges don’t always fit neatly into academic ‘boxes’. Having reflected on who tends to be disadvantaged by the current systems, we suggest that spending time thinking critically (and sometimes painfully) about these positions and relations can help to scaffold authorship norms that are fairer and more transparent.

You can read the whole piece here, free and open-access. But in this blog I wanted to highlight our authorship guidelines specifically. They are amended from existing excellent offerings of ICMJE and BSA, and move beyond them in that here we incorporate more explicit attention to different stakeholder contributions, and also to co-produced outputs. These are both themes that are long overdue more sustained reflection, and in an academic context of ever-increasing cross-disciplinary and cross-country collaboration and co-production with communities, we hope they prove useful for other researchers out there. 

Take a look at our suggested authorship guidelines and see what you think – and reply to this post if you have suggestions for improvements or any other comments:

 1.      The nature of academic publication processes and authorship conventions should be explained to all partners so that the meaning of authorship and involvement is clear to all parties regardless of university affiliation or discipline.
 2.      The project research/writing team should list details of expected papers early in any sub-project, including expected authorship and author order (especially first author).
 3.      The rationale for authorship and author order should be transparent. All authors must make a substantive contribution to the intellectual content of the publication.
 4.      Non-academic project partners should be invited to co-author the work, with plans in place early on about how to handle suitable contributions. Level of input required must be discussed and agreed early on to ensure clarity on how authorship is allocated.
 5.      Contributors whose contribution does not in the final product meet the criteria for authorship should be named in the acknowledgements. Named individuals must be informed so that they can withdraw their name if they wish.
 6.      Where used, translators/interpreters must be named in the acknowledgements.
 7.      Lead author must draft the paper, with input from other authors, and be responsible for submitting the paper and making any revisions in response to referee comments. The lead author must not submit any paper without the agreement of the named authors.
 8.      All academic publications should contain a statement about the contribution of each named author.
 9.      The PI must approve submission of academic articles from the project and must be named as author if criteria for authorship are met.
 10.    Academic journal publication must be supplemented with publication of findings in other channels to ensure inclusive dissemination (e.g. tweets, policy document, media article, public workshop).
 11.    The particular needs of members of the team should be considered in arranging publication strategy (e.g. need to gain experience of lead authorship). However, any named author must fulfil the requirements for their authorship position.
 12.    Sole authorship will not generally be possible or desirable within the project because of the collaborative nature of the work and our recognition that knowledge is co-produced through these collaborative relationships.
 13.    Consider adding the consortium or project name to all work with numerous contributors who do not meet the criteria for authorship and listing key contributors to the paper in the acknowledgements.
 14.    In the event of any disagreements or confusion about authorship or author order, please refer to these guidelines within the writing team. If there is still confusion, please request assistance from the PI as the question may need to be referred for a wider discussion and/or the guidelines may need to be clarified.
DEPTH Authorship Guidelines, 2021

Partnerships for Global Health: Putting theory into practice

For our latest DEPTH blog we asked LSHTM researcher Kimberley Popple to share her thoughts on NGO-academic collaborations as someone who has recently moved from the former to the latter. Thank you for your insights Kimberley – lots of food for thought!

Image: Dan Dimmock for Unsplash

Evaluation, Evaluation, Evaluation

Back in January this year I made the move from practitioner in the NGO world to becoming a researcher in the academic sector. I wanted to combine the skills I had developed in Public Health research with my knowledge and experience of programme implementation in the field.  It seemed to me that there were obvious synergies and opportunities for practitioners and academics to work together to improve global health. Certainly, from my own experience, the projects that I worked on could have benefited from drawing on people with specialist skillsets in data collection and analysis and with the time to conduct literature reviews, produce evidence maps, and test the change pathways that many of the programmes were built upon.

Before moving into academia, I worked on a large portfolio of grants in Sierra Leone as part of the Ebola response.  Most of the data we collected was used solely for routine monitoring and evaluation of interventions at the project-level. Its purpose was to track progress against set indicators and to report on spending to funders. As a result, collecting data that could be easily quantified was prioritised, and quantitative data was assumed by funders to show a greater impact than qualitative data. Further, qualitative data tends to fall within the remit of the accountability teams – it is used and relied upon but not as an indicator of impact. In the Sierra Leone scenario, success of an intervention was often measured by a high number of medical consultations or a large number of attendees at a meeting, rather than focusing on data related to quality of services or patient satisfaction. I remember one example of a gender-based violence (GBV) project in Freetown which was categorised by the funder as “underperforming” as the target number of survivors had not been reached. The fact that that the women who had been reached had received high quality support across the GBV spectrum of services was seemingly less valued. 

In Uganda, I worked on a maternal health project which introduced a client-exit survey for women to participate in at the hospital after receiving maternity care. However, the survey was administered by NGO staff who were working with the marginalised populations, and in close proximity to the medical staff who had provided their care. There was little recognition of the power imbalance between interviewer and interviewee or the desirability bias that might be present as a result of the women’s fear of negative repercussions from medical staff.

Evaluations were often seen as a tick-box exercise for donors and their design was fairly rudimentary. By the time the evaluation report was written, the programme had already moved onto the next phase to align with strict funding cycles. This left little room to reflect on lessons learned and engage in a process of iterative programme design. A recent systematic review has highlighted the lack of evaluations conducted on epidemic responses in humanitarian and low-income settings, with only one tenth of responses evaluated and with large gaps in quality, content and coverage of evaluations, limiting the ability to improve future responses.

Image: Dan Dimmock for Unsplash

Is the landscape changing?

Over recent years, the international development sector has intensified its focus on evidence-based programming and evaluation.  Many NGOs have increased their research capacity with dedicated departments and research staff (for example Airbel Impact Lab at International Rescue Committee, and the Response Innovation Lab at Save the Children), giving them the expertise and space to test out new formats for implementation, and to ensure programming is based on the latest evidence of what works.

New funding streams have emerged for research in the humanitarian field, such as Elrha’s R2HC programme, and there is donor pressure to evidence learning and use data for decision-making. Donors like the UK government’s Foreign, Commonwealth & Development Office (FCDO, formerly DFID) have developed more in-depth guidance on how to develop and use evaluation frameworks to measure impact and ensure accountability, with requests to include qualitative indicators in logframes.

What can academia bring to the table?

So, is there still a role for academics to play in supporting the work of NGOs? I believe there can be, particularly in the evaluation of complex interventions. Universities train public health professionals who often go on to work in the NGO sector. Expert knowledge of process and outcome evaluations can be drawn upon to test change pathways in Theories of Change. Systematic reviews can be performed by academics with fewer time and funding constraints, reducing the need to reinvent the wheel every time to search for the latest evidence. As academics, we can add our voice to campaigns as advocates of change. And the humanitarian health sector can harness specific skill sets in conducting clinical trials and in disease modelling. My sense is that as both sectors continue to develop and evolve, it will be important to continue to reflect on the value of academic-NGO partnerships for global health.

Image: you-x-ventures for Unsplash

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).

Screen Shot 2020-04-06 at 14.19.19

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.

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).

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 reflectionThe 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.

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 MarstonDEPTH 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.

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!

Presenting at the forthcoming BSA Medical Sociology Annual Conference

Last week, we headed to Glasgow for the BSA Medical Sociology Annual Conference to share a sneak preview of our findings from This Sickle Cell Life: voices and experiences of young people with sickle cell.

Sickle cell disease is a genetic blood disorder disproportionately found in minority ethnic communities in Britain. It is a chronic debilitating condition that both causes cumulative damage to multiple organ systems, and causes acute pain.

This Sickle Cell Life is part of the work of DEPTH research group at LSHTM. The project explores how people move from using child to adult healthcare services and asks young people about their experiences of living with sickle cell. Transitioning to adulthood is obviously not just something that affects clinical experiences and so we also explore education and relationships, and ask young people what is important to them.

At the BSA MedSoc conference we talked about how healthcare transitions shape the identity of young people, and how these transitions help ‘make’ particular kinds of patients.

Why focus on identity? Health transitions need new health knowledge and new behaviours to develop, but they also need development of self-perceptions and understandings of how a person should behave as an adult (rather than a child) patient. In this way, identities play an important role in shaping health practices and beliefs. Understanding identity development during transitions can help explain why some young people transition smoothly or less smoothly into healthy adulthood.

In our presentation, we talked about how ideas and discourses about self-management and healthy lifestyle within healthcare today act as a way to discipline young people “at a distance”, to quote Miller & Rose (1990) and influence their behaviour. These healthcare self-management discourses intersect with demands from schools that are often not compatible. For instance, schools demand that young people excel and become entrepreneurial, competent individuals, but excelling at school is far more difficult for young people who have to spend time in hospital, or who have to rest regularly to avoid having a pain crisis. These intersecting demands can translate into conflicting “self-disciplining” identities.

For young people with sickle cell, we found that transitions to adulthood involve relentless self-disciplining and self-surveillance to try to be as healthy as possible, while also aspiring to work hard so that they can develop and meet educational and career goals.

You can check back on our updates from the BSA conference on the Sickle Cell LifeTwitter account, here.