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Biomedicine and the humanities: growing pains
  1. Victoria Jane Hume1,2,
  2. Benson A Mulemi3,
  3. Musa Sadock4
  1. 1 Wits Institute for Social and Economic Research (WiSER), University of the Witwatersrand, Johannesburg, South Africa
  2. 2 Health Communication Research Unit, University of the Witwatersrand, Johannesburg, South Africa
  3. 3 Department of Social Social Sciences and Development Studies, Directorate of Research, Innovation and Graduate Training, The Catholic University of Eastern Africa, Nairobi, Kenya
  4. 4 Department of History, University of Dar es Salaam, Dar es Salaam, Tanzania
  1. Correspondence to Victoria Jane Hume, Wits Institute for Social and Economic Research (WiSER), University of the Witwatersrand, Johannesburg 2050, South Africa; victoriahume{at}yahoo.com

Abstract

In this article, we discuss the challenges facing humanities researchers approaching studies in clinical and community health settings. This crossing of disciplines has arguably been less often explored in the countries we discuss—Kenya, Tanzania and South Africa—but our experiences also speak to broader trouble with disciplinary ‘ethnocentrism’ that hampers the development of knowledge. After a brief contextualising overview of the structures within our universities that separate or link the humanities, medicine and social science, we use case studies of our experiences as an arts researcher, an anthropologist and a historian to draw attention to the methodological clashes that can hobble research between one disciplinary area and another, whether this manifests in the process of applying for ethical clearance or a professional wariness between healthcare practitioners and humanities scholars in health spaces. We argue overall for the great potential of humanities in the health ‘space’—as well as the need for improved dialogue between the disciplines to bring a diverse community of knowledge to bear on our understandings of experiences of health. And we suggest the need for a robust awareness of our own positions in relation to medicine, as humanities scholars, as well as a patient persistence on both sides of the humanities–health science equation to create a broader and ultimately more effective research system.

  • medical anthropology
  • history
  • arts in health/arts and health
  • medical humanities
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Introduction

Our article brings together three accounts from East and South Africa that serve to illustrate both the potential and the challenges of a humanities approach to healthcare.

Despite the relatively long lineages of medical anthropology, dating back to the 1950s,1–3 and medical history, dating back to the early 20th century4 (or more pertinently the social history of medicine, perhaps dateable to the 1960s),5 medicine and the humanities in general remain at some cultural and linguistic distance and their coming together can be a tentative, awkward business.6 7 There is a long history, too, of the arts’ conjunction with health, but the arts as health research, in particular, is a concept in its infancy.8 The work of medical anthropologists and historians in locations such as the USA, and of arts practitioners in the USA and the UK, suggests that this is more familiar territory in some countries than others. Indeed a cursory glance at medical anthropological and historical scholarship focused on East Africa suggests that much of it is still published by scholars based in universities in the North.

Many of the articles in this special issue allude to this theoretical imbalance between ‘North’ and ‘South’, and indeed the ways in which medical humanities (MH) from the ‘South’ is in and of itself a critique of this imbalance.i For us, however, the question is less one of hierarchy between the South and the North than an issue of communication across disciplinary boundaries.

With examples drawn from our personal experiences, we describe research conducted in a cancer ward in Nairobi, Kenya (Benson A Mulemi (BAM)); in relation to sexually transmitted disease in community settings in Mbozi district, Tanzania (Musa Sadock (MS)); and on an endocrinology unit in Johannesburg, South Africa (Victoria Jane Hume (VJH)). We argue that our quite specific experiences hint at broader issues relating to the complex intersections of the humanities and health, and speak to the humility and persistence necessary—from both sides of the humanities–health sciences equation—to bringing one disciplinary methodology to bear on another.

As well as the more familiar idea that knowledge created through the humanities is less ‘real’ than biomedical knowledge, these stories also warn of the humanities’ own reductive prejudices about clinical work and quantitative methodologies; as well as the dangers of working in a vacuum: when the space in health and healthcare that is not-medicine is so vast and so poorly mapped, the negative pressure can tempt us as humanities scholars to mistake our own limited incursions for a whole continent of knowledge. Moreover, the misgivings and lack of awareness of humanities scholarship among healthcare professionals (and/or researchers) are mirrored in our own need to better understand the language of health-science data collection and care.

Medicine and the humanities in three African universities

The concept of ‘medical humanities’ (MH), as this entire special issue suggests, is subject to ongoing attempts at definition. The one thing on which we can agree, to brutalise the Socratic paradox, is that we do not agree. Even allowing for this fluidity, however, we should not assume a commonality of context across continents.

Many of the leading MH texts derive from specific (Northern) scholarly contexts in which university faculties are organised in quite specific ways. Our own contexts may differ. According to Zeleza, the humanities as a discipline emerged in 20th-century Africa for those studies that had been excluded from the natural and social sciences (Zeleza, p5).9 The separation of the humanities from the social sciences is less than 5 years old in Tanzania. When MS’s project was under way, the study of medicine was non-existent at the University of Dar es Salaam—the School of Health Sciences was only inaugurated in November 2015, the year after its completion. Attention was paid to the disciplinary boundaries between medicine and the humanities, arts and social sciences, which shaped MS’s prolonged negotiations for ethical clearance, which—in the absence of a university medical ethics committee—was eventually given by a district research council composed entirely of members familiar with biomedical research protocol designs.

There has also been a strict distinction between humanities and social sciences and health/biomedical sciences in Kenya. University faculty structures typically distinguish medical from non-medical disciplines, which limits interactions among researchers and practitioners from what are perceived to be exclusive professional and career paths. Indeed, indicating ‘Arts and Social Sciences’ as BAM’s faculty, as an anthropologist seeking to carry out research in a clinical setting, intrigued the research and ethics committee, as they had not handled a research protocol from a non-medical scientist before. As with MS’s application, BAM’s was handled by an exclusively medical committee. With the increasing interactions between biomedical and humanities and social science researchers emerging across the last decade in Kenya, however, there is some hope that recognition of the medical and health humanities may materialise, as health sciences students have now been introduced to medical anthropology and medical sociology perspectives.

The University of the Witwatersrand (Wits) is one of the oldest and largest higher education institutions in sub-Saharan Africa modelled on the Western style of university. Besides the schools one might expect to find in South African Universities, Wits somewhat unusually houses social sciences and, more unexpectedly, speech pathology, audiology and psychology within the ‘humanities’. Equally rare in sub-Saharan Africa universities is the formal presence of the MH, except at the University of Cape Town8 and in a research stream within the broader multidisciplinary work of the Wits Institute for Social and Economic Research. As this SI suggests, there are many scholars working in areas that might broadly fall within the ‘MH’ rubric across different schools and research units across the region, however.

In all three cases, the clustering of the disciplines is largely influenced by administrative convenience rather than enhancing interdisciplinary projects. Interdisciplinarity tends rather to be fostered by research institutes with additional flexibility (and funding). Cross-curricular undergraduate work remains unusual.

Three case studies: Tanzania, Kenya and South Africa

Whitehead and Woods—in a helpful overview of the (largely Northern) development of MH—discuss ‘the three “Es” that have shaped and defined the field: ethics (medical ethics and bioethics), education (medical, but also increasingly health) and experience (particularly qualities of illness experience)’ (Whitehead and Woods, p3).10 Our case studies, all concerned with people’s experience of health and health interventions, fall under the third ‘E’. They are not collaboration, per se, and therefore not ‘multidisciplinary’ or even ‘interdisciplinary’. Instead all three apply the methodological approach of one discipline (respectively history, anthropology and creative practice) to an area conventionally believed to be the purview of another discipline (namely medicine, or more broadly, health). Moreover, our approaches were not text-based; we did not look (primarily) at another field of research, but rather worked as researchers in spaces of practice: either acute or community healthcare.

We summarise briefly below the context of our three approaches to understanding ‘qualities of illness experience’: historical, anthropological (specifically, ethnography) and creative.

Ethnography has evolved in healthcare settings over the past few decades in the North11–14 to focus on the descriptions of distinctive cultures of different hospitals, care practices in medical settings and societal values that shape patients’ experiences. Ethnography may examine, for example, unrecorded social behaviour, health and healthcare discourse, beliefs, ritual and the dynamics of social support systems that are essential to therapeutic relationships. Exploration of these elements in clinical settings in recent years has moved anthropological fieldwork from remote non-Western villages to Western institutions including biomedicine and hospitals.12 14–16

Although medical history traces its roots back to ancient civilisations in Egypt, Greece,ii China and India, the field separated from classical medicine in the late 19th century. However, medical history as an institutionalised academic field was founded in continental Europe in the 20th century (Rosenberg, p1).17 By the early 20th century, historians in Europe and America had started to integrate social, cultural issues into the study of medicine, health and disease. Notwithstanding the aforementioned developments in the field and up to the 1960s, as Rosenberg aptly observes, physicians dominated the field. Non-clinician historians only began to write about the history of medicine from the 1960s onwards following the rise of social history (Rosenberg, pp1–2).17 With regard to Africa, the discipline came with the imposition of colonialism, and scientists and physicians dominated the field. After the independence of many African countries in the early 1960s, the field was neglected until the 1970s when a handful of historiansiii and anthropologists began to write on medical history. Yet, from the 1980s onwards, the field has attracted great interest from historians. This situation has been spurred by the re-emergence of old infectious diseases such as malaria and tuberculosis (Marks, pp2065 and Malowany, 21518); and the emergence of the new one, namely HIV/AIDS5 19—a disease that became common in the 1980s and was by the 2000s an intracontinental crisis.

Creative research in health may be the youngest of the three approaches, but creative practice in health has ancient roots. Artists have always worked alongside medicine; examples, however scattered, exist as far back as recorded history.20 Over the last several decades, however, the various ways in which they meet healthcare have been significantly formalised. Alongside the evolving traditions of the arts therapies20 21 and community arts22 sit those of the ‘arts in health’. This last is a loose term (used perhaps mostly in the UK, the USA and Australia) to denote all kinds of artistic work conducted in an overt relationship with health—anything from commissioning visual art for a hospital wall to practising dance to mitigate the effects of Parkinson’s disease.23 A proportion of this work uses the arts as a means of documenting experiences of health, either autobiographically or via another artist (for example refs.24 and 25). Either implicitly or overtly it seeks to make the experience real to others by setting diagnosis and treatment in the broader context of people’s lives. While valuable knowledge of health is frequently created through this work, it remains fairly rare for this to be constructed or considered as research. This is changing, however (see eg ref. 26); and in South Africa a strong tradition of theatre in relation to social development,iv combined with the growth of photovoice and digital storytelling in relation to health, well-being and identity, is breaking new ground for the intersection between health, research and the arts.

We present below three accounts that may illuminate some of the frustrations and potential of these approaches. We will look not at the results of our research but at the context within which it was conducted. In all three cases, we focus only on two key elements of the projects: gaining permissions for the study and—during fieldwork—integrating professionally into the clinical, healthcare space.

Case study 1: An historian approaching community health in Tanzania (MS)

My PhD project on the History of Sexually Transmitted Diseases (STDs) was conducted in Mbozi district, in Tanzania, between 2008 and 2014. Mbozi—the district I come from—is predominantly rural. It is also the highest HIV/AIDS-affected area in the region. It is because of this reality that my study focused on investigating the forces behind the spread of, and responses to, STDs including HIV/AIDS in the district for over a century.

The study involved consulting documents and conducting interviews with key informants across the district. It straddled the disciplines of humanities, social sciences and medicine—and as a consequence encountered opportunities as well as problems. The major problems, which are the concern of this brief overview, were both methodological and misconceptions from some professionals that such a project would be the preserve of medicine and sociology (a social science) rather than history (a humanity).

Methodological hurdles during the conception and approval of the project

During the PhD’s conception and approval stages, which ran from September 2007 to 2009, I experienced the attempted imposition of quantitative methods on a study that was primarily qualitative.

Members of both the College Board and the Board of School of Graduate Studies, the university organs tasked with approving or rejecting a proposal before one embarks on fieldwork, insisted that I give a sample size and sampling procedures for the project. This suggestion at the College Board sparked resistance from some board members based in the humanities, especially historians—who argued that sample size and sampling procedures were not required, as the study intended neither to get representative sample populations nor poll opinions from respondents. Instead, they argued, the study was qualitative and aimed at finding and interviewing key informants—that is, people knowledgeable about specific past events and issues. It did not need to specify the number of interviewees. Most importantly, the study aimed at using archival and other past documents as its major sources for the reconstruction of the history of STDs in the district from 1905 to 2005.

Eventually, the proposal passed to the next stage of presentation at the Board of the School of Graduate Studies. Here, the same issue of sample size and sampling procedures resurfaced, mainly from board members based in the natural and social sciences. Despite my arguments about the irrelevance of sample size for the study, the Board of School of Graduate Studies resolved that this must be addressed in my proposal before it was finally approved by a subcommittee of the Senate under the chair of the Director of Postgraduate Studies. The Board of School of Graduate Studies directed that I should ‘Indicate clearly [respondents] who are to be interviewed and sample size in the Methodology’.v

My supervisor and I objected in writing to the chairperson of the committee, explaining why the sample size and sampling procedures were not required. Eventually, the committee agreed with our views and the proposal was approved, and thence passed on to the relevant district research council.

I would argue that the methodological clash described above stems from a lack of understanding among researchers from different academic disciplines. This is partly attributable to a conservatism inherent in each discipline—or what Paul Zeleza aptly calls ‘academic ethnocentrism’ (Zeleza, p4).9 In other words, where a member of a specific discipline only feels comfortable working with tools s/he has been trained to use (Hofstadter, p11).27 In the context of my study, a number of board members wanted to impose their working tools on my study despite their inappropriateness. Despite the challenge, however, my project was approved, though another problem was about to rear its head.

Suspicions from the medical profession: fieldwork experience

I faced some difficulty explaining the significance of historical research to some of the doctors working as Regional and District AIDS Control Coordinators. While in the field, I learnt that many projects on the prevention of STDs in the Southern Highlands of Tanzania involved collaboration between sociologists/anthropologists and medical professionals. Historians, like many other academicians from other humanities disciplines, were rarely involved. Implicitly, my project was seen by some medical professionals as an intrusion into space reserved for sociologists and healthcare professionals. Many of the AIDS Control Coordinators mistook my study for sociology; and when I explained that mine was a historical study, they asked for the significance of the project. I replied that the study could use past lessons to help solve some of the current problems related to the control of STDs. For example, understanding the failures of past interventions against other STDs that had focused on specific populations (such as sex workers, migrant labourers and low-ranking soldiers) suggests that attempts to control HIV/AIDS should encompass the whole of society and consider diverse approaches to fighting the epidemic, approaches that might include tackling poverty and gender inequalities. Medical personnel at the local level, such as Rural Medical Aids in rural dispensaries and Medical Assistant Officers in health centres, were convinced by this explanation, but the more senior Regional and District AIDS coordinators remained unconvinced.

Case study 2: An anthropologist investigating cancer in acute care (BAM)

My reflections derive from a study I carried out in a cancer treatment unit and ward of a public national referral hospital in Nairobi between 2005 and 2007.28 The study was approved not by the university, which as we explain above lacked the capacity to approve ethics relating to health, but by the Kenyatta National Hospital/University of Nairobi Ethics and Research Committee (ERC). I drew on direct non-participant observation and informal conversations as the main data collection techniques. I participated in informal, brief and focused, in-depth conversations with selected respondents and key informants on multiple occasions. Patients and caregivers in the study gave informed consent by either reading through and signing the consent form or agreeing verbally. I participated in the hospital and ward activities as a social being rather than a researcher claiming biomedical expertise. At times I had to run errands such as calling a relative, bringing a newspaper, getting mobile phone airtime cards and moving a pillow or even calling a nurse for patients. I occasionally consoled patients and some grieving relatives.

I elicited more data from other people who participated in the ethnography indirectly owing to their presence and engagement in the research setting as patients and either hospital or family caregivers. I perused some of the patients’ files for more background information on their social and medical history. I combined observation, focused formal interviews and informal conversations with patients, relatives and hospital staff in the adult cancer ward and clinic to collect information on how the different actors coped with cancer management and associated adversity. The second part the hospital ethnography entailed follow-up visits with 10 patients at home to explore the socioeconomic circumstances that shaped ongoing hospital management of cancer. The primary goal of the study was to contribute to hospital ethnography in low-income, middle-income countries and show how hospital and family circumstances in Kenya shaped patients’ experiences of acute cancer treatment.

What might be called the ethnographic dimensions of healthcare and research are rarely incorporated in hospital-based research in sub-Saharan Africa. As with MS’s study, it took time for the research ethics committee to endorse the hospital ethnography owing to the different and often conflicting views about the place of qualitative research design in complementing the pursuit of understanding ‘objective’ medical phenomena. The hospital’s management ultimately concurred with the research ethics and clearance committee’s final welcome of ethnography as a ‘new research approach’.vi

In the field

My ethnographic approach to understanding cancer patients’ experience of health was clearly new to the study hospital, and more broadly in the context of hospital-based research in Kenya (with some notable exceptions after my fieldwork).29–31 This fieldwork method remains unconventional for biomedical professionals and other hospital staff who have not been exposed to the social sciences’, arts’ or humanities’ approaches to and interest in health and healthcare. Some healthcare professionals viewed the hospital as their exclusive domain, in which non-medical disciplines could have no significant contribution. An oncologist, for example, said:

Sorry … you know you are doing a study in our department … one of us should be your supervisor … that is how it goes. You are using our patients … but you are doing the study with other people … How will the head of this department or I benefit from the study? … the only way one of us can benefit is through writing papers from the data … You are doing a study and we are the ones giving you the information … That means that you are using us … (Field notes, April 2006)

The qualitative approach in general was unfamiliar to clinical professionals, and hospital ethnography, more specifically, is inconsistent with typical healthcare work, quantitative research protocols and patient assessment procedures. Hospital care often entails impersonal, objective interactions with patients, which may not allow prolonged personal conversations with the patients and medical and family caregivers. On granting the research clearance, however, the ERC finally acknowledged the innovativeness of the hospital ethnography project as a relevant approach to understanding health issues and implementing patient with cancer care initiatives. The ethnographic experience confirmed the fact that the shortage of personnel in Kenyan public hospitals limits the amount and quality of time hospital staff are able to spend with patients and their family caregivers. My study also revealed that an ethnographer may be able to do what doctors and nurses are unable to: to listen to patients’ stories. Several nurses informed me that the ethnographic process was useful as many patients ‘opened up’ because of having someone they were able to talk to about their illness experiences.

My interaction with general physicians and oncologists demonstrated the challenges of collaboration with them as a non-biomedical actor. Medical hospital staff may be uneasy with the ethnographer or healthcare participants who lack a biomedical identity. This is because the hospital is an ‘unusual site’ for anthropological or non-clinical research or work.28 Similarly, conventional medical specialty boundaries construe clinical settings and healthcare practice as being outside the territory of disciplines that constitute MH. The presence of practitioners in the arts, humanities and behavioural and social sciences among biomedical professionals may also threaten the latter’s autonomy. A senior nurse-in-charge, for instance, asked me during a ward round:

Are you going to say in your report how badly we are doing? People will say, according to research done by so and so it was found that things are going in this manner … Are you investigating to report how efficient or inefficient we are? (Field notes, October 2005)

The above observation implies twofold interdisciplinary suspicion due to a convergence in conventionally delineated professional territories. First, the presence of a social scientist in the clinical setting created an uneasy curiosity. Second, qualms emerged about cross-disciplinary precision in eliciting evidence on health issues and their measurable contribution to the patients’ overall treatment, recovery and quality of life. Interdisciplinary tensions manifested further in the interactions between hospital staff in the higher and lower socio-medical hierarchies. This was characterised by the tendency of senior hospital staff to overrule and rescind the care decisions of more junior medical and administrative staff. I witnessed the uneasy patient care relationships, for instance, following the rejection of suggestions by nutritionists, social workers and a counsellor due to the ‘lack of published medical evidence’.

The remark below—made by a doctor in the Cancer Treatment Centre Admissions and Review Clinic—hints at both the restrictions placed on my research (‘just sit there and observe’) and the interest in it.

… what exactly do you want to observe? That must be a very interesting research … Okay, just sit there and observe … (Field notes, August 2005)

And indeed my experience did reveal clinicians’ gradual appreciation of the humanities approach to healthcare. Nurses began to introduce me as ‘one of us’. And in a debriefing seminar in which a haematologist had remarked ‘now we want to listen to real science’ (in an attempt to distinguish between ethnographic and biomedical presentations), my work was defended by a senior microbiologist.

Case study 3: Arts research investigating diabetes care (VH)

Between 2014 and 2017 I was a project manager on Blood Sugars, a 3-year, Wellcome Trust-funded public engagement programme focused on diabetes types 1 and 2.vii Blood Sugars was developed as a collaboration between applied drama, health communication and clinical practice, and was underpinned with research assessing the facilitators and barriers to care in an urban South African diabetes clinic. Data collection was a collaborative effort and made heavy use of both social science structures and applied drama techniques.

Ethics was—as for MS and BAM—a significant hurdle. This was a complex project requiring (as with most arts/health projects) public distribution of data in a number of forms (photographs, text, a performance, a short film)—making it ethically ‘risky’ from a review committee’s perspective, and requiring us to submit multiple full applications (five, in total) for one project—all somewhat awkwardly blending arts processes such as filmmaking or workshopping with research frameworks designed for more straightforward data-gathering enterprises.

From my perspective, however, perhaps in part because the arts are at least perceived to be subject to more fluid ethical processes than the social sciences, this admittedly time-consuming process of submitting (in every sense) to the medical ethics framework helped structure the project and iron out issues of confidentiality that might otherwise have been hard to address effectively in a large team. This awkward fit relates to the fact that the ethical quandaries presented by the arts differ from more conventional research methods.32 For all that it was necessary to ‘translate’ arts practice into a form that was legible to non-artists, however, this did not circumscribe the arts activity. Nor did the committee evince any principled reluctance to support what might be seen as a leftfield research approach. The suspicion VH encountered was in this case more on the side of the humanities researchers, who were initially reluctant to engage with the forms and processes of medicine, assuming them to be bureaucratic and restrictive. Yet in a recent evaluation of the project, one of the applied drama facilitators explained her gratitude for the ethics framework, which she felt strongly had helped contain extremely challenging conversations that arose during workshops.

Senior clinicians were enthusiastic about the project—as were the nurse educators. If some of the younger doctors emanated wariness in early meetings, and if clinicians struggled to understand the difference between applied drama and drama therapy, the social science/drama team matched this with gaps in our own knowledge: underestimating both—biomedically—the importance of the differences between type 1 and 2 diabetes, and— logistically—the complexity of hospital timetables and the demands our participatory ideas would make of them.

Fieldwork

The project took a phased approach to fieldwork.viii Initial data were collected using fairly conventional social science methods—observation, interviews and focus group discussions—by a team of two: an applied dramatist (Limpho Kou) and a social scientist (Tshegofatso Seabi). As with MS and BAM, the researchers found themselves constantly required to explain their presence. But the amount of time they spent in the space (weekly visits over 6 months) allowed us, like BAM, to reach a point of familiarity beyond the initial mystification. Once Kou and Seabi had established themselves, the next step—to introduce drama workshops—was far less difficult to take.

At this point a team of applied dramatists and actors were brought in to run a short series of workshops with patients and healthcare professionals, using forum and playback theatre.33 Here the interaction shifted into a far more emotional, lively space, where participants controlled the actors’ behaviour to establish and manipulate their own stories of health.

Kou and Seabi (and the trust they had built up in the unit) remained vital in this process. The two researchers recruited people into the workshops, oversaw consent processes and on some occasions stepped in to man the phones and answer questions for long enough to allow nurses to attend a (short) workshop. Like BAM, comforting relatives, providing the relief of conversation, their roles morphed from observer of to participant in the clinic.

The last phase was conducted outside the clinic, where in we built on the background information from the phases above with three ‘storytellers’ (living with diabetes) to develop a play.

The play was refined in conversation with two of these storytellers, and brought back to the hospital space for further feedback. To our delight almost every doctor in the clinic attended this ‘draft’ performance and offered helpful suggestions to improve the impact and accuracy of the play. The performance went on to travel to a variety of community settings and conferences.

Discussion

Our discussion will develop the two themes that emerge most strongly from these brief overviews, namely gaining access to a healthcare space and integrating into it once you are there.

Gaining access

Permission

All three case studies demonstrate a tension between humanities methodologies and health research ethics clearance processes that will be familiar to anyone who has worked at this intersection. There is some truth, after all, in the fact that medical ethics processes are bureaucratic, and that their particularities are strange to both humanities researchers and creative practitioners. The processes have been developed to safeguard patients likely to be subjected to clinical research, often involving an intrusion into the body of some kind, or observation of varying degrees of intimacy. They exist in a context where people may want to keep their health status secret for a multitude of reasons. They are also a response to the risk of coercion attached to health research, especially where the researched is likely to be in a position of relative powerlessness in relation to the researcher. The quantitative emphasis of most clinical research has encouraged a particular design, one that requires a sense of scale (sample number) and a sense of how people will be inducted into the process (sampling procedures) to mitigate these risks.

On the surface, the quantity-oriented design is ill-fitting for the purposes of the humanities—moreover, medical ethics’ notions of confidentiality and anonymity do not neatly align with the third ’E' (personal experience) we hope to elicit.10 But of course if we, as humanities scholars and creative practitioners, find these processes incomprehensible, the same may be true for the committee member trying to decipher our processes, and to their credit, often giving us the benefit of the doubt. Both biomedical and humanities actors need to understand the scope of each others’ disciplines to regulate access to diverse social and physical spheres in health research and practice in a mutually acceptable way. This may alleviate disciplinary and professional hegemonies, which shape academic or scientific ‘ethnocentrism’ that may in turn encumber the common goal of offering holistic healthcare (cf. refs.14 and 34).

The historians’ resistance to their university colleagues’ insistence on the quantitative is interesting in MS’s example. It draws attention to the ways in which this resistance is usually bypassed. Any humanities scholars working in health will come up against numbers in this way that seems entirely foreign to their training, but most will simply provide a number and rely on a (perhaps mutual) understanding that this is just a guide, and a way for the humanities to use qualitative ‘codes’ to get through systems designed for clinical research. Or they will (like VH) submit to these foreign rigours entirely and end up with hybrid work which itself is regarded with some suspicion by the ‘home’ discipline (is it really art if it has subjected itself to clinical frameworks?).

MS’s historian colleagues clearly felt this to be an incursion into disciplinary ‘rights’ and were prepared to argue against it. Successfully, in fact—as, eventually, the proposal moved through to the Board of the School of Graduate Studies. Similarly, the critics of BAM’s methodology were progressively cognisant of the complementary roles of ethnographic and quantitative methodologies in healthcare research and practice. This gradual acceptance of humanities approaches points to the need to be steadfast in advocating for disciplinary complementarity and an emphasis on methodological uniqueness as a way of facilitating useful professional interaction between humanities scholars and healthcare specialists.28

Zeleza’s ‘academic ethnocentrism’ (p4)9 (whereby a member of a specific discipline feels comfortable only with the tools s/he has been trained to use (p11))28, manifests in two ways in MS’s case study. First, a proportion of board members want to impose their own working tools, which to this historian seemed inappropriate. Second, MS’s home discipline resists another’s framework—despite tackling a subject conventionally considered to be within the latter’s purview.

Points of entry

The comments made to BAM—‘How will I benefit? You are doing a study and we are the ones giving you the information … That means that you are using us …’—evince a feeling of being ‘used’ by the ethnographer that merits some reflection, partly because there is some truth in it, although it may be glossed with paranoia. The anthropologist is after all using hospital staff and patients as her/his subjects—as a means of furthering her/his own researches. Chavis, Stucky and Wandersman note the very real risks of one-way processes in which data never return to the hospital or staff in question.35 The sense implicit in this clinician’s comments, of a closed loop in which clinical research ‘returns to sender’, may also be false, however; as Yasinksi puts it, ‘The world of clinical trials is far from perfectly transparent.’36

Watching arts practitioners explain their processes to a roomful of doctors at an early stage of the research, VH remembers a familiar discomfort at the clashing approaches. It seemed clear to her that the audience had little interest in the niceties of the applied arts. Yet this was not the suspicion that BAM and MS experienced as much as a habit of speedy decision-making processes. Overall, the attitude from senior hospital figures was one of welcome to anyone offering to help ameliorate a chronically under-resourced and growing problem. Clinicians knew only too well the indivisibility of medical and social issues, but lacked the capacity to effect change outside the hospital walls.ix

BAM’s own encounter with suspicion confirms for him the need for cross-disciplinary conceptual and methodological learning. Both biomedical and humanities practitioners lack basic cross-disciplinary knowledge. While medical practitioners may benefit from humanities' knowledge of the quality of care, social scientists and other experts in humanistic sciences may need more skills for ‘speaking medicine’, ‘knowing biology’ and ‘taking care of patients’ (Poland, p61).37

As BAM has argued before, the reception of hospital ethnography and humanities in the biomedicine realm is often gradual and its success depends on continuous rapport-building.29 With regard to cross-cutting ethnographic approaches, professional disagreement or conflicts in collaborative work in clinical settings can be minimised by clarifying methodologies. Anthropologists in clinical settings, for example, have to clarify their methods because the potential contribution of ethnography is not yet fully appreciated. Elaborating on the ethnographic approaches can also diminish the misconception that the choice of ethnography is an escape from scientific rigour in research.38 Practitioners of MH and biomedicine require a basic knowledge of the cross-disciplinary language of healthcare data collection and care interventions.

On both sides of the health–humanities equation we may need to consider what it might be helpful for our colleagues to understand, but also the point beyond which specialist knowledge is helpful only to the specialist. Harrop-Allin et al,39 for example, argue for the need to respect professional terminology when it comes to arts interventions in health spaces, but—to be deliberately provocative—how much does it really matter that an applied dramatist is sometimes called a drama therapist? And how much of physiology does a sociologist need to understand to be beneficial in a hospital setting?

This larger question of how much we need to know of each other’s worlds to work together infuses all multidisciplinary aspirations, but the MH, where the disciplinary breach is often so large, is particularly prey to large gaps in knowledge. To work cross-faculty—as the case studies suggest—may be a bigger leap than intra-faculty.

We would argue that we must temper our expectations of people’s capacity to understand our processes if we are to find ways to work together. And to cultivate patience with ourselves, as well as those whose disciplinary languages we do not yet understand.

Integration

Hospitals—including those within which BAM and VH conducted their research—are closed spaces. They are of course frequently sites of research but with notable exceptions (some of which are discussed in this special issue) this research rarely falls outside clinical paradigms. Although of course the amount will vary country to country, as far as we are aware humanities research in hospitals remains rare internationally. Similarly, in rural sub-Saharan Africa (areas such as Mbozi district in Tanzania, where MS conducted his research), field research is dominated by the social sciences. All of us, then, were outsiders in our chosen spaces. A position that leads to particular privileges and constraints.

As a hospital researcher without a biomedical identity and training, BAM found his interaction with nurses, patients, family caregivers and patient support staff easier than that with physicians and oncologists, for example. The latter either felt that they did not want to be part of a research process based on unfamiliar design or perceived the anthropologist’s presence as an intrusion into their professional workspace. General physicians and oncologists perceived less of a professional connection with an anthropologist than nurses and allied health professionals. As we have seen, nurses introduced him as ‘one of us’ (field notes, March 2006). And as a social being in the hospital he consoled patients and grieving relatives. Some ward staff considered his role—observing the space, and speaking to people—to be that of offering patients an alternative audience to whom they could express their emotional concerns; a pastoral role, in other words. In VH’s experience, this pastoral role is also often imposed on creative practitioners in hospital spaces. In one previous project, for example, a clinical psychologist had suggested that patients were willing to tell artists far more than she had been able to elicit—precisely because of their lack of biomedical identity.

Ethnographic skills—listening to patient narratives—may enhance therapeutic relationships through promoting patients’ readiness to confide in the caregivers. This also reinforces the narrative model of healthcare communication and therapeutic expression, which Whitehead and Woods describe as part of the ‘primal scene’ of MH (Whitehead and Woods, p2;10 see also Marini, p143)40 and which continues to be an influential stream of MH. Narratives among patients and some support staff in the Kenyan hospital ethnography included religious reflections, gospel songs and recounting of dreams. Some patients contributed personal diaries in which they composed autobiographies of their illness and treatment experiences. This broad ethnography could be said to be a form of ‘emotional communication’,41 which supports the researcher’s empathic understanding of patients’ emotions.

BAM’s work was appreciated both by patients—for listening to their stories,and nurses—for helping patients ‘to open up’. This implies that an integration of anthropological approaches and specifically ethnography in health sciences and nursing curricula would contribute to the quest for comprehensive incorporation of MH in medicine.

Yet this apparent elision between the humanities and humanitarianism presents an interesting conundrum for the researcher. BAM was in a position—indeed was professionally obliged to listen to stories. Hospital ethnography may facilitate patient-centred care initiatives because of its capacity for listening to patients’ experiences. Bosk reminds us that

fieldworkers watch, listen and use their own feelings and responses as guides to their interpretation of what is going on. In essence this kind of observation is not terribly different from what psychiatrists, psychologists, and social workers are instructed to do as therapists. (Bosk, p. 17)14

For the therapist, however, ‘this witnessing of action is a prelude to activity … This is not so for the fieldworker, who absorbs but does not respond to the situation’ (Bosk, p. 17).14 In the end, researchers are not counsellors; they are there to gather evidence. The complex boundaries between learning from a space and intervening in it—and between empathy and exploitation—are of course a subject of continual contention in anthropological circles,42–45 and to a lesser extent in the arts—and it is perhaps beyond the scope of this article to add to that discussion here. Yet it is worth noting that the risks inherent in the position of researchers are arguably especially acute in a space where as patients and families we are out of control of our position, and removed from our normal contexts—where our defences are down, in other words.

In relation to this, it is interesting to note that both VH and BAM have found themselves confused with doctors in hospital settings—in VH’s case (on a separate study) by an intensive care nurse, in BAM’s case by a number of patients. The lack of a uniform, the apparent ability to occupy otherwise private space, and ask questions of patients and families, probably in combination with our (middle) ages, suggests a particular position in the hierarchy associated primarily with doctors—similarly roving, mysterious figures. It is a mistake to think us doctors, of course, but it is telling of our privilege as humanities researchers—working to our own timetables in a highly regulated space. It behoves us to be aware of this privilege in a context where most staff—let alone patients and their families—have no such capacity for self-regulation. It is worth noting briefly that the two researchers working with VH, Kou and Seabi—as young womenmay have occupied a slightly different position in the space than that of BM and VH. And that this position (together with the trust they had patiently built over months of regular visits) perhaps contributed to the nursing staff’s willingness to have them support the administration of the unit.

BAM’s experience also suggests, however, that the presence of researchers could be perceived as a threat to the professional autonomy of healthcare professionals—in the case, for example, of the senior nurse who asked him whether he was ‘investigating to report how efficient or inefficient we are’.

VH, too, was asked by the study’s principal investigator (Prof. Claire Penn) to assure clinical staff before any research began that the team was not there to assess their work. Here the professional suspicion encountered by MS again emerges, although in a different form. Again, as humanities scholars we must consider the context into which we are walking. Hospital professionals are continuously being assessed in relation to their position in a rigid hierarchy. In a context in which decisions are undermined and professional competence regularly questioned, it is no surprise that external assessment may invite suspicion. It is up to us as humanities researchers to make our position clear, and—crucially—share the results of our work—an obligation often forgotten once we return to the safety of our home disciplines.

Conclusion

The cases presented in this article point to the significance of the orientations of MH practices such as the creative arts, anthropology (particularly ethnography) and history in the pursuit of contextualised, just and more humanised medical care (Bosk, pp xiv–xvi).14

By drawing on personal research experience, this article has outlined some of the challenges associated with projects that span disciplines. The challenges include, among others, academic ‘cocoonism’, and the belief that health issues are the preserve of specific disciplines.

This brief analysis of the experiences of three very different researchers in East and South Africa illuminates the complex nature of inclusion and/or exclusion tendencies inherent in various disciplines and professions. It is perhaps easier for us to make welcome a member of our own specific discipline or profession than a non-member, who may—particularly in the pressured environment of healthcare—represent a threat to our professional practice and be treated with some suspicion as a consequence. Yet all of these researchers’ experiences suggest that this rule does not hold as we become more familiar with each others’ work.

We would argue for the importance of dialogue across disciplines for a better (and more just) understanding of what might be termed ‘socio-medical’ issues that, by their nature, require a diverse community of knowledge.

The fact that we initially fail to understand the ways in which others’ disciplines might intersect with our own is perhaps inevitable. In just the same way that historians, artists or anthropologists will likely be unaware of the latest technical shifts in HIV research or kidney care, a nurse cannot be expected to know about the critical turn, or to realise that as a discipline history may have left behind the text-based model that we were taught at school and moved into the ‘real world’. We might know the headlines, but—unless we work in a way such as that van der Wiel describes in this volume,6 specifically to understand the architecture of clinical practice and researchx—we will not understand the structure that produces these headlines.

It is the doing that will make it possible. Short-term, one-off studies cannot foster a culture change. Until these one-offs begin to string together into a recognisable form (as may have happened with anthropology and social science in MS’s Tanzanian community health context), they are just unusual events. The keys to integrating these new practices into health spaces, therefore, may well be time and persistence.

But with this persistence we may be able to give voice to the silent aspects of biomedicine and strengthen submerged discourses in the pursuit of health and well-being. This article presents a plea for conscious efforts to bridge the divide between humanities and biomedicine to alleviate the growing human suffering due to a lack of adequate understanding between these approaches to cure and care. History, ethnography and the arts all have the potential to contribute to the growing global focus on health and social justice.46 Medical and health humanities can contribute to the effort to integrate humanist perspectives in attempts to strengthen the interface between non-biomedical practice and fieldwork in interventions for holistic health production, particularly among populations that are underserved in African health systems.

Acknowledgments

The authors acknowledge the support of the Medical & Health Humanities Africa Network and particularly the editors of this special issue in bringing this article to fruition.

References

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Footnotes

  • i For the purposes of this article, we subscribe to Levander and Mignolo’s definitions of ‘North’ and ‘South’(Levander, p. 3).47

  • ii In Greece in 431 BC historian Thucydides documented the emergence of plague during the Pelponnesian War.48

  • iii One of the more celebrated being Shula Marks.5

  • iv https://artshealthsouthafrica.wordpress.com/2014/09/08/something-like-82-of-the-audience-went-for-hiv-testing-within-a-week-of-having-watched-the-theatre-piece/ (accessed 3 March 2018).

  • v A letter from the Dean, School of Graduate Studies, ‘RE: Results of PhD Research Proposal,’ to MS, dated 2 February 2009.

  • vi Research involving human subjects in hospitals usually involves a twofold process of written permission: first, from the related university’s medical ethics committee; second, from the hospital itself—often in the form of its Chief Executive.

  • vii See https://mesh.tghn.org/articles/blood-sugars-diabetes-and-drama-joburg-and-soweto/.

  • viii It would be unusual for a creative practitioner to use this term, but I use it here for consistency with BAM and MS.

  • ix Although it should be noted that (as is far from unknown in South African government hospitals) physicians often paid for their patients medications themselves, and had in the case of this particular clinic developed workshop programmes to support employment and help people out of the traps chronic illness can close on us.

  • x Or indeed, as described in,7 within both medicine and the humanities.

  • Contributors All authors draw on their own research for these case studies.

  • Funding The studies discussed in this paper were funded and supported by (for VJH) the Wellcome Trust (grant number: 106481/Z/14/Z) and the National Research Foundation of South Africa; (for BAM) the Amsterdam Research institute of Metropolitan and International Development Studies (AMIDSt), University of Amsterdam and the AG Levintis Foundation at the University of Cambridge Centre of African Studies; (for MS) the African Doctoral DissertationResearch Fellowship (ADDRF) 2009 offered by the African Populationand Health Research Center (APHRC) in partnership with theInternational Development Research Center (IDRC) and Ford Foundation, the University of Dar es Salaam and the AfricanHumanities Dissertation Fellowship for 2011-2012 offered by African HumanitiesProgram (AHP) of the American Council of Learned Societies (ACLS) . VJH acknowledges in particular the following partners in the Blood Sugars project: the Health Communication Research Unit and Drama for Life (University of the Witwatersrand) and the Diabetes and Endocrinology Clinic, Chris Hani Baragwanath Academic Hospital.

  • Competing interests None declared.

  • Patient consent Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement If readers are interested in further data relating to these studies, they should contact the corresponding author.

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