“communities and patients seem far more open to arts as a tool for allowing their voice to be heard, allowing them to become empowered”
Interview with Dr Jennifer Watermeyer, member of the Health Communication Research Unit and a Senior Lecturer in Speech Pathology & Audiology, University of the Witwatersrand (6th August 2014).
VH Maybe if you start by telling me a bit about your organisation or the work that you do within your organisation…
JW OK. So the Health Communication Research Unit started off in about 2004; I was an undergrad student, and Claire [Penn – Director of the Unit] had started her focus on qualitative research in healthcare contexts. I think that really came out of a frustration that she had with her own discipline, of Speech Pathology, and just wanting to – extend beyond the boundaries of that discipline, and really use what we know about communication, and particularly about interpreting, to get into healthcare contexts and make a difference.
So she started with a couple of projects looking at interpreting – and looking at it from a linguistic angle, and then the project really – grew into something more, and then we started [thinking about] ‘OK well, we’ve had a look at doctor-patient interactions, what else can we look at? So, I came on board as a postgrad, and looked at pharmacy interactions; other people started looking at other interactions; and we found that we built up this collection of … different healthcare fields. And then once we’d looked at a number of professions and healthcare interactions, we started to branch out a bit further, and say ‘well how can we turn this into training, or – something meaningful, that would actually impact on practice in clinics?’
And that has really been our primary focus in the last few years. And out of that has grown [work with] for example, Drama for Life – working in an interdisciplinary way with specific clinics, with specific people from other university departments … With a focus on disease-specific, site-specific training, research, recommendations to sites.
Essentially what we are doing is trying to empower health professionals and teams in particular – rather than saying ‘OK we’re going in to fix these nasty doctors’ [laughs] or ‘deal with these lazy nurses’ (because I think that is often the perception out there); so we’ve looked at the team, and done training with teams.
Out of that basis grew this focus on – almost an action research approach to what we do. And – from that has grown funding support, so we have a lot of funding from various organisations, we’ve grown our postgraduate numbers, we’ve grown our outputs. And one of our goals has really been … not only to support and empower clinics locally and health professionals throughout Africa, but to actually focus on establishing a research area in South Africa, because ‘health communication’ didn’t really exist. There were a couple of splinter people doing research here and there but nothing really focused.
So, a lot of the work of the unit has been around trying to establish that niche. And also a commitment to quality research, and trying to publish internationally. And trying to showcase our work at international conferences, in international publications etc.
VH You were saying something quite interesting about conferences before …
We were talking about … perhaps a lack of communication between South African and scholarship from parts of Europe, or the rest of the world.
JW Yeah, I mean we’ve gone to a number of international conferences over the past decade. And it’s been a hard journey. We often find that we are the only ones from outside of Europe and the US and Australia. Those seem to be the strong regions in terms of health communication research. And we’re usually the only South Africans; the only Africans, often. … I think our issues are very different, but in a way we have such strengths – in our diversity, and in our approach. And South Africans are known for making a plan, and making things work when we don’t have resources. And being cut off from the world during sanctions and apartheid really taught us that. But it’s meant that now, as we enter into an international arena, people still look askance and they say ‘oh, it’s the South Africans … oh shame, they’re trying hard…’ And that is really the attitude that we’ve found in a lot of contexts.
And especially if you mention the word HIV there’s an attitude of … ‘it’s got nothing to do with me. It’s not a European problem.’ So we’ve learnt to hide the South African bit, we’ve learnt to hide the HIV bit; and although we present on those topics, we don’t flash it around in the title, in the abstract, to the same extent as we used to; because we found that when we did, the response was often not wildly enthusiastic.
VH Would you say it’s a failure of imagination, something to do with not being able to apply the concept of AIDS as a chronic disease to – what might be thought of as a ‘European’ chronic disease?
JW Yeah, I think it’s partly that. I think it’s also a lack of understanding of the South African context. I think people really don’t know enough about us. And it’s only after many, many years of really trying hard, and going to the same conferences, and building up research links and collaborations, that people have started to see that our research has value. And that the research that we’re doing is in some ways much more advanced and further down the line than what some of our colleagues in other countries are doing.
… It’s hard to get that recognition. … We’ve had [similar experiences] with publications – and I know it’s not just us, it’s [also] other researchers around South Africa who’ve had the experience of being told by journal editors that we need to get our language edited. I think any time the word ‘Africa’ pops up, there’s an assumption that it’s not good enough, it’s not – of interest.
VH That’s shocking.
JW It is shocking [laughs], but it’s kind of – it is part of our role, too, to go out there and educate people, and that’s why we trek across the world to these conferences, that’s why we pay huge sums of money and stay in dodgy youth hostels etc. In order to showcase our work.
VH There’s a kind of interesting comparison with the arts and health world in a way … I think people in that world have also invested quite a large proportion of scant resources on pitching up at conferences where they wouldn’t be expected. And trying to demonstrate that it is possible to have a sophisticated concept of health that doesn’t come from a clinical, pharmacological model. I mean it’s a different issue; but it’s all to do with prejudices about what constitutes valid intellectual thought, valid academic work, valid – stuff that could potentially feed into policy.
JW Yeah, and I think ultimately what it really says is that medicine is still so dominated by – a medical point of view, by a quantitative background, by clinical trials, and that mindset is really what we’re [up] against.
I was talking earlier about instances of supervising students where you put together a beautiful qualitative project and then you have to defend, and fight, and go through a whole process of trying to get it through some committee who’ve decided that they don’t think qualitative research is something that medics should be doing. So that has been difficult. I’m dealing with an issue at the moment with a student who’s put together a lovely project that’s qualitative and quantitative, and no, they don’t want the qualitative bit, they’re prepared to approve the quantitative bit but not the qualitative. And my argument was it’s actually not a project without both elements. We’ve had to prove … that I’m somebody who has qualitative experience, I’m coming on board with this project, I’ve worked on projects before at the clinic. And even with that kind of argument, they’re still saying No. Not interested. So that’s the mindset.
VH And it’s unfortunate because there obviously are individual doctors who feel very differently about that – individual researchers who feel very differently about that.
JW Yes, and I’ve come across some wonderful people out there. I’ve done research for example with [people like] Ashraf Coovadia, who’s at Rahima Moosa Mother and Child Hospital; who heard me speak at a conference and came up to me and said ‘I love the work that you’re doing and I want you to do research at [my] clinic, and I’m completely invested in learning about qualitative research, having qualitative studies done at the clinic…’ And that process that has opened doors for other students to start qualitative projects, for other staff members at that clinic to learn about qualitative research. But that’s – that’s the exception, not the rule.
VH How much of the HC unit is focussed on health outcomes … Is it more about – behavioural change, or do you have a sense that you’re having a direct impact on the health of communities or individuals?
JW That’s a very tricky topic to answer and it’s something that we’ve grappled with tremendously over the years … essentially what we are working with is the premise that if we improve communication between health professionals and patients – if we improve understanding, if we improve relationship, rapport, trust, all of those elements, then we are hopefully promoting … improved adherence to treatment; because if you have buy-in, and you have a relationship or a sense of trust between a patient and a health professional, that patient is more likely to adhere to that treatment. But then how do you measure that? And that’s the issue that we’ve grappled with. How do you measure for example going in and doing a training workshop on communication skills? How do you measure whether that has impacted positively, caused change etc.?
So, we’ve had a number of big projects over the years where we’ve tried, sometimes quite ambitiously, to look at the micro aspects of interactions and communication. And do a sort of a pre-/post-intervention assessment. With mixed results. Because communication is so complex, it’s not something that you can very easily measure. And so what we’ve been doing over the last few years is working on the basis that this is our premise: we are anticipating that it will lead to improved adherence, improved health outcomes, improved patient follow-up, patients actually arriving for consultations etc. But we can’t measure it [very easily].. And there are studies out there, for example in the States – people have done work looking at things like the link between communication and adherence. And so we’re building our research on what other people have done.
VH Again there’s quite a lot of parallels with arts in health – I think it’s that thing of quite a complex intervention that’s working on a number of levels, and how do you disentangle one aspect of it from another aspect of it…
JW [with the arts] … I think there are huge opportunities for getting involved with communities. And what we’ve found through some of our work is that communities respond very positively when you bring the arts in. So for example drama; or other people have done projects like memory boxes, which involve drawings, and narrative. And allowing people to feel that their voice is being heard. And I think the arts are brilliant tools for enabling that to happen.
VH So it’s primarily to do – for you – with finding ways of hearing the patient’s perspective, voice, narrative, all those things…
JW Yeah. And to be honest I think in terms of getting an in, and getting the buy-in, communities and patients seem far more open to arts as a tool for allowing their voice to be heard, allowing them to become empowered etc. … And that’s been a very positive way of getting involved.
VH Why do you think that is?
JW I think its because the medical fraternity are so entrenched in their ways, in what they’ve been taught, in how they’ve been taught – and it’s only through experience that I think some of them have their eyes opened to the fact that the arts have a place. But I think communities come without those preconceived ideas. And I think [that in] a lot of our communities in South Africa, diversity brings with it an attunement to things like arts, music. Storytelling is something that is very much entrenched in some of our African cultures, for example. So they’re far more open to that.
VH So it’s a way of tapping into something which is already an accepted form of communication rather than imposing something which isn’t?
JW Absolutely, yeah.
VH And [do] you have an example of a project where you think that’s worked particularly well, and where there’s been a specific intervention that you think has done something that couldn’t have been achieved [otherwise]?
JW I think the project that I would think about most is the one that we did in a clinic in Mpumalanga, where we spent quite a long time doing preliminary interviews with patients, community members, staff, about some of the challenges at the clinic, what was working well – and based on that research we went and designed an intervention programme that involved drama techniques … things like role-playing difficult situations, communicating with children for example. And our aim with that was really to empower the staff and develop a sense of teamwork.
And that was a very successful workshop … over two days; and out of that came a follow-up study where we went back six months later and said ‘OK, how did that workshop impact on you, and your practice?’
And what we saw was that staff were then able to take those techniques and implement them in the way that they practised. So, for example, some of the staff had developed songs – there was a song about handwashing, there was a song about TB – and then taken them into communities. … one of the staff members [also] had an adolescent group where she started working on developing a film about the community, about the challenges that they faced.
So that workshop and the introduction of drama techniques … actually empowered the staff to use those same tools, or similar tools, to reach out to communities. Which was great.
VH I think it’s quite easy for artists to be – protective of their methodology … I feel very strongly there’s a case for the professional artist in a lot of these situations, but it’s interesting … in a way one of the greatest values is handing over those tools; so they’re not – really yours to keep in the end …
JW Yeah, ultimately surely that should be the point – that we empower other people to run with it, and to take the tools that we teach them; and take those into communities to effect change? Because we can’t possibly be doing all of this prevention and promotion and educating and empowering; so I think that’s a big component of an action research approach – to actually train people to then carry it out themselves.
VH Do you have any sense of the relationship between that kind of art intervention and the mainstream art world? … Does it feel like a continuum or does it feel like they’re completely distinct practices?
JW For me I think it feels like it’s quite distinct. And certainly in the academic environment, and from my experience of having worked with the drama department for example, it seems to be quite disconnected. So we have programmes where people, for example, go in and do education on a health topic in schools and prisons, in clinics. But that is very different in some ways to what they would be doing on a stage, as a theatre production. Although I think their aim is to try and bring the two together, and to train students and enable students to be able to do both, I think there is quite a disjuncture between mainstream arts and what we’re doing in healthcare practices.
And perhaps that’s just because it’s a fledgling field, in terms of what we’re doing in those healthcare contexts; … Catherine Burns [in her interview here] spoke about trying to establish a medical humanities focus in South Africa, and because we’ve never had that, I don’t think there’s ever really been much of an interface between mainstream arts and healthcare contexts [in South Africa]. And so by actually establishing fields like medical humanities and health communication in this country, that gives us opportunities to – to go forward. And start to interface with – the arts.
VH How do you feel you sit in terms of mainstream health practice at the moment?
JW … It does feel a bit like a starfish approach sometimes: that through your research, you have the opportunity to educate a couple of people, and to open a couple of people’s eyes to this world of looking at healthcare in a different way. It’s not something that you can reach out to the masses with – at this point. [laughs] The medical masses are not necessarily receptive; so it’s very much … changing one health professional’s perceptions, or one clinic’s perceptions, at a time.
VH [Do you have a] sense of whether there is such a thing as ‘arts in health’ in South Africa? I’m aware that it’s not really used as a term, but – but do you think it’s a practice that exists and is established … in terms of what’s happening ‘on the ground’? Are you aware of stuff when you go to clinics?
JW On the ground, I would say for the most part no. But you do find … people like us, people like DfL [Drama for Life], for example, who are actively going into healthcare settings and doing small projects based on the arts, or bringing in qualitative research. And I think the arts and the qualitative side of things very much go hand in hand – the humanities, the arts, qualitative [research]. But for the most part, no – I don’t think there’s a field or a – an established – ‘anything’.
VH But it creeps into conferences in strange ways; you were talking about Section 27 and the work that they do –
JW Yeah – there’s a very strong activism base here in South Africa; so the Treatment Action Campaign, Section 27, and other organisations, are very, very vocal, and it’s really because of their hard work that we have, for example, such a big ARV rollout programme. So activism has always been something that’s very strong in this country. But how that interfaces with the arts would be an interesting thing to look at – and I mean certainly my experience recently at this TB conference in Durban was that [laughs] the interface between the activists and the medics was not a particularly easy one. … a lot of the medics were not particularly happy to have the activists there. … So [laughs] – there’s work to be done, I think.
VH It struck me that [in the context of health activism] perhaps that the arts are just one of a range of tools, rather as they are for you, that can be used to – to push an idea or to change a way of thinking, something like that?
JW … I was interested along those lines to see that at this TB conference there was a lot of focus on films, for example, and – and actually showcasing films that tell narratives of people who have experienced diseases.
My sense is that we have a very big job, and a – responsibility – as artists, as humanitarians, or as qualitative researchers – to focus on quality in the way that we introduce the arts into medicine. So if we have quality productions, where there has been research underpinning it … really fantastic production … not just a group of [laughs] fluffies coming together and putting something on … that is when I think the medics really listen, and are interested.
So that would be my point of view: that I think we need to have a commitment to quality; because we are – we are very much still seen as the fluffies [laughs]; and unless we actually work on changing that … there will always be resistance to getting the arts into healthcare, and medicine.