PhD researcher Shelly Makleff and Professor Cicely Marston, members of the DEPTH research hub at London School of Hygiene & Tropical Medicine, have collaborated to write a new blogpost about the value of qualitative data in assessing sexuality education.
Their piece, titled ‘Qualitative data shows how sexuality education can address social norms’, explores how comprehensive sexuality education (CSE) might influence young people’s beliefs and behaviours, via a study examining a one-term comprehensive sexuality education programme implemented by Mexfam. The researchers employed an in-depth, longitudinal qualitative approach to the research field to learn about changes as they were happening, rather than after they had taken place. As Makleff and Marston argue:
A combination of retrospective interviews with a wider range of participants and longitudinal interviews with a small number of “case study” participants can be useful: it illuminates a range of participant experiences while enabling researchers to zoom in on some of the small and gradual changes that they experience.
You can read the full blog on the ALiGN website, here.
Two members of the DEPTH team, Cicely Marston (supervisor) and Shelly Makleff (PhD student) discuss how best to present quotations from interview transcripts when writing up. We talk about how to present ‘untidy’ speech (e.g. ‘um’, ‘er’, repetition), how much to ‘tidy up’ quotes, and the implications of any ‘tidy up’.
Shelly’s interviews and analysis have been done in Spanish and the quotes she presents in the final write up are translated into English. Here we present a lightly edited version of a supervisory email interchange we thought might be useful to others. And we would love to hear your views in the comments – we certainly don’t have all the answers.
To leave a comment, make sure you’ve clicked on this article’s headline so you are reading the post itself, not the DEPTH blog homepage.
SM: How do you clean up a transcribed quote to present it in an article? Every time I cut some words, even just filler words, should I mark these omissions with an omission marker (such as […])? Or do I have the liberty to just cut those fillers without a […], in order to create a clean and readable quote?
CM: In my opinion all cuts should be marked with an omission marker (e.g. […]). I have argued about this with a journal before because newspapers use ellipses to indicate omissions (rather than a specific omission marker that only indicates omissions). The issue is that when you do this, there is no obvious way to mark pauses in someone speaking so you would need to find another pause marker that won’t be confused with an omission marker. You could do this by writing [pause] every time, but this also makes quotes hard to read if there are a lot of pauses. When you are using translated quotations, it is less clear what to do because for instance, you might keep the translation ‘clean’ by not including every single one of the filler words (though I would recommend you keep them as much as possible where there is a direct translation (e.g. in Mexican Spanish, hesitation where people say ‘este…’ can be translated as ‘um…’ in English), or at least if there is no direct equivalent, make sure you keep the spirit of the original which might have involved hesitations).
For translations, where it is good practice to provide the original language version in an appendix, one way to get around this is to present the original language quotations with all the pause markers etc included, and then present ‘tidied up’ translations in the body of the article. If you do this, you should mention it in the methods section so the reader knows they can refer to the original language quotations. Note that ‘tidying up’ is particularly challenging when you are working in your non-dominant language, which is all the more reason to present the original language transcript excerpts verbatim.
SM: Ok, so sounds like you’d always use […] to signify every piece of cut text in the article. For a conference poster, do you think it’s ok to leave out the […] for filler words so it’s smoother to read?
CM: I would keep it precise i.e. show where you have edited – I assume you won’t cut all the ums and errs. I get quite suspicious when I see a perfect quote because very very few people speak in complete sentences with no hesitations. if you genuinely think the hesitations are unimportant in any given instance, then you *can* edit them, but make sure there is a note that you have done this somewhere on the poster, for transparency.
SM: If I’m adding clarifying info in , do I do that instead of or as well as the words that are being replaced? In other words, would it be “So for them [the students]” or “So for [the students]”?
CM: I would go with the longer version so that it is clear what they actually said versus what is your interpretation/explanation.
SM: Can I add punctuation and make sentences to create more clarity, when the speech was transcribed as a long run-on sentence?
CM: Yes, definitely improve the punctuation – transcriptions are almost always badly punctuated, especially when the narrative includes reported speech, in which case transcribers often give up on attempting to punctuate it altogether – and to be fair it can take a while to get it right even if it is quite obvious without punctuation what the speaker has said. It is worth doing because it does make it much harder to read when transcripts not properly punctuated. If you are not sure how to punctuate the sentence from the transcript alone (e.g. it is unclear where the emphasis in the sentence was), you will need to go back to the original audio to ensure your ‘new’ punctuation correctly represents what was said.
SM: I wish there were guidelines for this! In a quick internet search, I didn’t find any, at least not that are clear per discipline. While looking for guidelines I did see an article about the diversity of perspectives among academics about how they edit qualitative quotes. One perspective in favour of editing out the filler words pointed out that if participants saw their own quote with all the filler words, they’d feel embarrassed, and it isn’t an expectation that everyone speaks perfectly but that as researchers we should present their ideas as clearly as possible in a way they’d feel comfortable with. And actually, in Mexico when we shared the transcribed quotes with the health educators, they felt embarrassed about it, joking that they needed diction classes. They even made a meme of their horrified reactions when they read their words on paper and heard how they talked (see below). For the presentation of the data, we hadn’t really cleaned up the quotes, it was mainly verbatim, but the idea still stands- the way we represented them didn’t make them sound eloquent, and that embarrassed them.
CM. I agree that if the quotes have names attached to them, the person might prefer a ‘cleaned’ version, but your quotes are anonymised and so from an individual perspective I don’t think that is too much of a concern.
Having said that, it’s true that original, not tidied-up quotations might contribute to a discourse of the ‘other’ being inarticulate. People who are looking for ways to find others inferior will likely find them regardless and so I’m not sure that compromising the integrity of the transcript will help (although I’m open to arguments to the contrary).
Overall, though, going along with the idea that there is a ‘better’ way to speak brings its own problems. Should we all speak in perfect sentences? Who determines what is ‘perfect’ or ‘best’? This is especially difficult if you are trying to ‘tidy up’ sentences that were spoken in another language than our dominant language. As researchers we should commit to transparency. Interviewers who worry about their sentences should probably listen back to the interviews – they will hear that it sounds very normal, even if they hesitate, repeat words, use filler words, reframe questions and so on. It’s important to build rapport – if you don’t naturally speak in 100% full sentences in real life, why would you do so in an interview? Being inauthentic, or struggling to present a more perfect self, may well have a negative impact on the interview overall.
What do you think? How have you handled these issues? Let us know in the comment section below. If you can’t see where, click on this article headline and scroll to the bottom.
Our latest blog is by Dr Sam Miles, who discusses the recent publication of his academic article ‘Still getting it on online: Thirty years of queer male spaces brokered through digital technologies’ in the journal Geography Compass.
By way of introduction, I thought I’d borrow from my latest article to give you a snapshot of what I’ll be talking about in this blog post:
I call on contemporary scholarship to demonstrate how [mobile phone] platforms offer a way into answering larger cultural questions about cruising, queer social life, and space. I conclude that these locative digital media occupy a distinctive position in the history of queer technologies and signal a shift in how gay male online spaces are both conceptualised and experienced.
In the social sciences, theories of sex and sexuality have long been tied up in ideas of space and place. There are any number of examples we can think of, from the spaces of sex work and how these spaces are regulated or policed, to the rise (and more recently, fall) of the commercialised ‘gay village’ in the global north, which is often discussed in terms of its relations with economics and gentrification.
Trying to better understand the relationship between sex and sexuality and space is important because beyond theoretical ideas, it has an impact on how a location might influence sexual identity, practices or safety. For example, healthcare interventions for sex workers might depend on a safe space accessible from their working space. Civil rights demonstrations or an LGBTQ pride parade in a repressive political environment can be read as a temporary ‘queering’ of the orthodoxy or regime by making space for sexual difference in streets normally controlled by the mainstream.
My own research has focused on digital technology and sexual practices. I have been interviewing ‘MSM’ (men who have sex with men, including but not limited to gay and bisexual men) to learn more about how recent developments in technology mean that queer male space is not just physical, but virtual too.
Geography Compass invited me to write an article for them reviewing the history of queer male online space. I think this topic is particularly fascinating is because the social sciences have long tracked physical queer spaces, and this research is widely known; less is known about how online platforms contribute to producing or re-making queer spaces. What I specialise in is locative media – by which I mean GPS enabled mobile phone apps – that are now very popular amongst MSM to network and meet others for social and/or sexual connection. These locative apps include Tinder, Grindr and Hornet, and have a huge user base around the world. Grindr alone counts nearly 4 million users per day.
I argue that the development of mobile internet over the past decade, and the GPS abilities that are now built into even basic smartphones, strongly influence how men meet other men for relationships and sex. This in turn has an impact on ‘offline’ LGBTQ venues such as gay bars or cruising sites, as well as traditional understandings of ‘queer community’ and what that might mean. As I write in the article:
Male–male locative media can strengthen and extend social‐sexual networks, facilitating meetings with like‐minded men across a borough, district, or city. This is especially true among the users for whom a queer community is out of reach because of their isolation, whether familial, social, or geographical.
Of course, being connected to other sexual minorities through an app does not automatically constitute a community, but some users do report a sense of like-mindedness, even if this does not match up with the more established ways in which we define community.
Beyond MSM populations specifically, this idea of technology redefining community, whether for better or worse (or indeed both!) is crucial to how we understand how technology mediates human behaviour. In a public health context, technology needs to be harnessed in ways which are alert to local conditions, whether that is in terms of unequal access to technology, or an affinity (or restriction) to certain kinds of communication device. At the same time, the widespread adoption of mobile phone technology – 5 billion people worldwide now have access to mobile phones – shows that digital technology ‘on the go’ will become ever more central to daily life. The job now is to extend research carried out on mobile digital technologies and sexualities to different populations to help us understand more about how these platforms will impact on social and sexual practices in the near and distant future.
You can read Sam’s article here and follow him on Twitter here.
What is the legacy of medical sociology? How has it shaped other disciplines and practices? And what is its role in challenging the status quo of inequalities in health?
These were some of the topics discussed by very talented people at this year’s MedSoc (Medical Sociology) Conference in Glasgow. These were also some of the issues that drove our aim to explore how transitions to adulthood for young people with sickle cell could be improved and how healthcare services could help support these. The conference provided a great opportunity to present our sickle cell research.
Our presentation focused on how health transitions shape the identities of young people and how this contributes to the ways in which young people develop into adult patients. Transitions to adulthood can often bring challenges, and for young people with sickle cell, the challenges often faced in education, social and emotional transitions to adulthood are complicated by their condition, and they must navigate these complex changes as well as changes in their hospital care that can bring problems as they move from child to adult health services.
There was a range of interesting presentations to choose from. Martyn Pickersgill’s fascinating talk about the dialectic between patient experience and diagnostic practice, resonated with some of our findings on the hybridisation of knowledge through the dialogue between ‘subjective’ patient experiences and ‘objective’ evidence. Charlotte Kühlbrandt’s ethnographic paper helped to shed light on the intricate relationship between citizenship/non-citizenship and patienthood/non-patienthood in the context of Roma Health Mediation in Romania. In this case, health mediation becomes correction in the production of normative forms of citizens and patients. In our case, we showed how healthcare transitions become self-disciplining ‘at a distance’ and form part of a relentless process of self-governance through which young people try to become the types of patient and citizens they ought to be.
Eva Krockow made us think about how we balance the individual versus collective good when we make choices about antibiotic prescribing.
The panel plenary, with a focus on inequalities, was fascinating. The keynote papers from Professor Ellen Annandale discussed the ‘gendering’ of health inequalities and the embodiment of global gender power relations such as the health consequences of biogenetic trade. Professor Hannah Bradby pointed out barriers faced by forced migrants across Europe, the stratification of migrant status and how this interacts with “acceptable” forms of vulnerability. Some migrants find themselves having to amplify and enact their vulnerability (mental health) to access care and citizenship status. Professor Graham Scambler’s keynote paper on “What’s Left of Class for medical sociology?” encouraged discussion about our role as sociologist activists in challenging health inequalities.
With Scambler’s call to action, I left the conference eager to continue my commitment to medical sociology and critical engagement with inequalities in health. You can keep up to date with our work in these areas via our website, DEPTH twitter account and our This Sickle Cell Life project twitter account.
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.
Despite widespread media attention, repeated public health alerts, and the US President’s declaration of the opioid overdose epidemic as a ‘public health emergency’, fatal overdoses continue to rise.
A key factor is pharmaceutical fentanyl – a powerful synthetic opioid commonly used in clinical settings to reduce moderate to severe pain. Since 2014 illegally manufactured fentanyl, and many of its analogues, have been used to adulterate street drugs, principally heroin. Fentanyl is considerably more potent by weight than heroin and has been responsible for a significant number of fatal drug overdoses in North America since 2015.
Preliminary data released by the Centres for Disease Control and Prevention suggest that in 2016 more than 20,000 people died from unintentional overdoses involving synthetic opioids (not including methadone) in the United States. In Canada, 3,671 people died from unintentional overdose in 2017 – 72% of these deaths can be attributed to fentanyl or fentanyl analogues.
So what can be done?
Harm reduction agencies in North America have begun to distribute test-strips which, when dipped in a drug solution, are able to detect fentanyl and many of its analogues. Is this a potential answer to the overdose problem? Perhaps; but caution is required.
First, research suggests that while self-testing technologies may be accurate in a laboratory, they may be considerably less effective when used in a real-life setting. Contamination, for example with injecting equipment, is more likely to occur in a street setting than a laboratory.
Second, the test strips are only able to indicate whether or not fentanyl is present in a drug solution, they do not indicate how much fentanyl is present. In cases where a comparatively large proportion of a drug is fentanyl, ‘test hits’ taken by users to reduce their risk of overdose in response to a positive test may be ineffective in reducing the risk of overdose.
Third, while some test strips have demonstrated greater than 95% accuracy, this still leaves the possibility of a false negative in one in twenty tests of fentanyl-adulterated drugs. People may inject heroin up to five times a day rendering false-negative a fairly regular occurrence. Additionally, test strips have shown to have a low detection limit, a drug sample may test positive when a minimal amount of fentanyl is present. There is a risk that users may not consistently modify behaviour if drugs are routinely testing positive without producing the anticipated psychoactive effect.
Fourth, not all test strips are created equal. DanceSafe, a US-based public health organisation, in conjunction with the University of California San Francisco, tested five fentanyl test strips from three different manufacturers and found that four of the test strips did not detect carfentanil (a fentanyl analogue that is considerably more potent by weight than fentanyl); one test strip did not work at all.
The need to tackle the fentanyl crisis is clear. A recent drug-checking pilot carried out in Vancouver found that 90.6% of drugs submitted tested positive for fentanyl. Though fentanyl was most commonly found in heroin, it was identified in other street drugs as well, including: amphetamines, methamphetamines, crack, and cocaine.
And the problem is not confined to North America. Since 2014, six fentanyl variations have been identified in the UK, with several overdoses attributed to fentanyl occurring in the North East of England in 2017.
But should we be promoting test strips as a potential solution to the crisis?
In June 2018 Health Canada cautioned against relying on test strips alone, suggesting that other precautions were necessary to prevent overdose including: never consuming alone, consuming a lower dose – “start low and go slow”, and only using drugs in the presence of someone who is equipped with, and knowledgeable about the administration of, naloxone.
Providing appropriate messaging on how to interpret test results and their limitations is key. We must understand more about the accuracy and acceptability of fentanyl self-testing, and research should also aim to inform the development of an effective means of dispensing test strips – and associated risk-reduction measures – to those who do not regularly come into contact with harm reduction services. Education and appropriate harm reduction messaging to mitigate against the risk of false negatives alongside strategies to prevent or reverse overdose is crucial.
There is huge potential in self-testing technology but it must be used as part of a package of risk-reduction measures. The problem is clear but the answers are not.
Our article, ‘Slow co-production’ for deeper patient involvement in health care’, has just been published in the Journal of Health Design. It’s open access so anyone can read it, download it and share it. The article argues that ‘slow co-production’, achieved by involving patients in in-depth research, can help deepen patient involvement in health care. We describe how slow co-production offers a mutually beneficial form of patient and public involvement. It promotes patient-centered knowledge and helps us to examine and reflect on the co-production processes themselves, rather than always rushing to evaluate the end product as if it came into being without a process and a series of human relationships.
The thinking behind this article was our different and shared experiences of time constraints in qualitative fieldwork. We discussed, for example, those times when we felt pressured to move on from fieldwork when we didn’t feel we had been able to fully examine the narratives that we were learning about, or the interviews we were conducting. This restriction to fieldwork research is usually required for budget and time constraints, but it can feel frustrating to have to withdraw from the work being conducted when it feels like there is more to be gained.
More positively, we recognise that we have also experienced opportunities for more thorough, in-depth ‘slow’ research, including the Sickle Cell project that this new article takes as its case study. We believe that this kind of ‘slow’ research, as previously explored in healthcare research by Vincanne Adams et. al (2013) and Heather Mendick (2014) amongst others, is an important antidote to the ever-building pressures that are heaped upon the researcher. To make things yet more complicated, these pressures come from a range of different external sources: for example, a rush to complete fieldwork within a limited timeframe to minimise costs for the funding body, or unexpected delays in participant recruitment that mean that tightly organised fieldwork cannot extend beyond the ethical clearance period granted by the host organisation.
This idea of ‘slow’ working isn’t new (see, for example, Honoré, 2005, or ‘A Call for Slow Scholarship’ by Hartman and Darab, 2012), but it is worth repeating: so much of academic research is subject to the restrictions of budget, outcome, time constraints and metrics that need ticking off that we forget how valuable time and space are for germinating our best ideas. The useful analytical frameworks, or new theories, or vital links we make between seemingly unrelated sets of results are often produced in the scarce time we get to think deeply about concepts or theories at length. It is this type of time which has become most compressed in the contemporary neoliberal university, where there are so many competing demands on the researcher’s time and attention, from emails to admin to marking to service.
In our discussions we came to a consensus that for us, ‘slow’ co-production is about having time to genuinely engage with others in dialogues that cover more ground than simply sharing ideas, although of course ideas come from dialogue so the two concepts aren’t separate. As well as sharing ideas, we can think of slow co-production in terms of humanity and human rights: specifically, reducing the gap between the researcher and the researched, and trying to find common ground in a qualitative methodology that productively disrupts some of the traditional boundaries that we have seen replicated over and over across social sciences and public health research. Therefore, as well as the point that taking more time in the research field can develop more positive, meaningful relations between the different parties in the research, we also want to stress that this in-depth, detailed, sensitive approach to interviewing is a specific form of co-production, and one that we want to pursue further across our DEPTH projects.
So, whilst our article is primarily arguing for the importance of involving patients and participants in qualitative research from the start and throughout the lifespan of a research project, we hope it also offers a small insight into the opportunities enabled by ‘slow’, thorough working between researchers and participants. This ‘slow’ process – scarce as it sometimes feels the opportunity is – can offer a really valuable way into mutually beneficial collaboration.
Hartman Y, Darab, S. (2012) A Call for Slow Scholarship: A Case Study on the Intensification of Academic Life and Its Implications for Pedagogy. Review of Education, Pedagogy, and Cultural Studies, 34(1): 49-60. https://doi.org/10.1080/10714413.2012.643740
Honoré C. (2005) In Praise of Slowness: Challenging the Cult of Speed. New York: HarperCollins.
Now that you’ve been introduced to our new blog, we thought it would make sense to give you a whistle-stop tour of our DEPTH research group here at LSHTM.
We are a group of scholars in the Department of Public Health, Environments and Society at London School of Hygiene & Tropical Medicine who take an interdisciplinary approach to health. We are one of LSHTM’s newest hubs, developed earlier this year as a way to bring together some of our shared work. We use the acronym DEPTH to unify our themes of Dialogue, Evidence, Participation and Translation for Health. We conduct research into different types of dialogue and different people’s participation in health with the aim of increasing equity and improving health worldwide, and amplifying less-heard voices.
Our new website has allowed us to introduce a wider audience to our public health work – you can check it out here. We see it as a space for communication and conversation – not just with academic colleagues, but also in policy debates, in education systems and with the wider public. We also think it is important to show our work to a wide range of audiences, not just specialists, and so we have listed all of our individual or combined efforts on thispage, including summaries of each research paper listed in plain English, with concepts summarised and acronyms explained. You can read about the six Research themesthat underpin DEPTH here. These research themes include our work on patient and public involvement, dialogues about sexual and reproductive health and young people’s experiences of Sickle Cell, and our work with Imperial College London on the ethics of electronic health records.
As for this blog, it functions as a conversation space. It provides a way for us to write about important studies in the field of community involvement, participation and public health. We will talk about our own research, but will also write about current affairs as well as research from elsewhere, when we would like to contribute to debate. We agree that one of the most important things we can do as academics is move beyond our own research specialisms to listen to – and amplify – the perspectives of those who may be less heard. We hope you will find these perspectives as valuable as we do – and key to this is conversation.
Finally, we want to hear from you too! Our blog now has comment space, and we’re very keen to hear your views, thoughts and ideas. You can get also get involved via our Twitter account, and you can contact us with questions, feedback or even your own blog pitch. Finally, look out for upcoming events on this blog page, where we will post details of future talks, meetings and events, as well as commentaries on new publications and policy.
Thanks again for reading and we look forward to sharing more about our work at DEPTH.
We’ve recently developed our own website, including academic publications, updates and links to our research areas including This Sickle Cell Life, sixteen18 and patient & public engagement. To ensure maximum interaction with readers, we have made this WordPress website to allow (indeed, to positively encourage!) reader comments. We feel that this is a crucial part of our work. We see our blog as a space for communication and conversation – not just with academic colleagues, but also in policy debates, in education systems and with the wider public.