Nursing involves being with people at the most difficult times in their lives, maybe after experiencing trauma (both mental and physical), receiving a serious diagnosis, being bereaved or experiencing health problems that lead to social isolation and stigma. Nursing requires us to enter into these sensitive spaces with compassion, sensitivity and skill – guided by a sound knowledge base. Conducting research into the sensitive, often socially taboo, areas of life has to be a central element of nursing academia, and there have been some excellent examples in JCN recently. For example, the study by Lo et al. (2008) with fungating wounds investigated the stigma experienced by patients with severe facial disfigurement, work by Huang et al. (2008) exploring parents experiences of having a child with cancer and Ayaz and Kubilay’s (2008) study into the sexuality dimensions of stoma care, which explored those most intimate issues of sexual activity and body image. Such research is important because, like nursing itself, it enquires into the places where individuals are often most vulnerable, where people are at need most and, therefore, where nurses can make the biggest impact.
There is clear evidence that, when nurses initiate discussions about sensitive areas of their patients’ lives, it is usually appreciated and welcomed. Often patients find the topic too difficult or embarrassing to mention and are relieved when practitioners open up the issue. However, such interventions require a sound evidence base, and it is vital that as nurse researchers we continue to press the boundaries with research into sensitive issues, particularly exploring and testing what is effective once we have begun to explore these sensitive issues with our patients. In other words, when we ‘open the door’ into these areas of our patients’ lives, it is crucial that we can actually try to do something when we are there. In this regard, I particularly selected Ayaz and Kubilay’s (2008) work on sexuality and stoma as an example earlier because it not only explores how patients feel about a sensitive issue (something we are often quite good at) but that it also offers a process, subsequently, to address these issues in practice. This later point is often lacking in many research studies that explore sensitive issues. Exploratory studies are worthwhile and shed light on these ‘dark corners’ of health and illness – but a light should be something to work by – and I think we need to do more in exploring and testing what can be done in practice to address, ameliorate and manage the sensitive issues we have uncovered. It is vitally important that nurse researchers continue to develop this work especially in cultures and settings that have been traditionally resistant to many sensitive issues concerning health and behaviour.
However, I think that there are three particular issues that have developed over the last few years that can have an impact on nursing research in sensitive areas and are worth exploring. First, are we beginning to shy away from research that may be considered ‘intrusive’ or ‘voyeuristic’ by overly eager ethical and scientific review bodies? Maybe we are; the rise of the research governance ‘industry’ and its efforts to police research can have a detrimental, creeping, effect upon researchers. From my own field of research in sexual health I have experienced colleagues sanitising questionnaires and interview schedules to remove ‘intrusive’ questions or items at the behest of scientific and ethical review boards, often reducing the opportunity to collect valuable data on topics that are certainly sensitive – but important nonetheless. The notion of privacy and confidentiality are, rightly, more strongly enshrined in health care policy and procedure now, but we must not let these concerns stifle the requirement to understand how our patients and others experience the most sensitive and traumatic issues in their lives. If nurse researchers had not, for example, explored sexuality in such detail in the post AIDS 1980s (often in the face of public and professional resistance), we would not be in the position we are now where sexuality is widely seen as a relevant aspect of nursing care. However, referring back to an earlier point – we are still not as good at describing effective ways to address sexuality in care practically as we are at highlighting it as an issue.
I think that this attention by research ‘gate-keepers’ may well be having a secondary effect too; are we as researchers sometimes overestimating the emotional harm our work in sensitive areas may cause? I occasionally have to advise colleagues and students in describing how they would deal with an interviewee becoming distressed during a research study and how they would manage this type of event. This is again done mainly at the behest of ethical review procedures. This may be appropriate in some instances – but I have yet to upset an adolescent male by asking him about his sexual behaviour, drinking, drug taking or smoking. Are we getting some things out of proportion? I am not proposing that in many situations safeguarding against emotional reactions by research participants is not relevant – but perhaps we need to be more selective. It could be that there is now a ‘standard’ response to queries about how our research may cause emotional stress that leads to complacency. We do not seem to have a wide evidence base for the extent of the emotional distress caused by nursing research or a sound body of literature on its management. It is time that nurse researchers, particularly of the qualitative genre, began writing about their experiences and the measures they propose to avoid emotional harm and/or to address it within their research. For example, how common is this issue, are there any screening procedures that can reduce this problem, how do we deal with the tensions between being a nurse and a researcher when participants become upset, what pathways of referral are useful? Furthermore, what evidence have we got to understand the long term emotional impact of sensitive research – on both participants and researcher – and how can research designs address this?
Paradoxically, there is also another issue in sensitive research – that of de-sensitisation to what is and is not sensitive. By this I mean, as nurses, we so often live with certain issues and have come to terms with them that we may forget their power. A classic example from sexual health research is the assumption that everyone is as happy with questions about intimate sexual practices and sexual orientation as we sexual health clinicians and researchers may be. This could also equally apply to other intimate private issues we encounter as nurses such as bereavement, bodily disfigurement and mental health. Research into sensitive topics requires a great deal of self-awareness and reflection on how the issue is viewed by others. We may be completely aware of the rationale for asking men if they have ever had a homosexual experience – but reviewers and research participants will need to be clear that these type of data are helpful to us as practitioners – not that it is simply interesting to know. Being clear about the practical benefits of such research will also help to justify this type of enquiry. I think we need to move beyond the maxim that simply knowing about these sensitive issues and raising awareness amongst our fellow practitioners is enough. We need to be addressing the ‘so what’ element of this type of research; in other words, what can we do in practice to help? Indeed, it is this last point that is a particular strength of the JCN in that researchers are consistently asked by the editorial team and reviewers about the implications for clinical practice of their research.
Another issue is that research that explores the most sensitive areas of life should be rigorously designed and conducted by a skilled researcher. This sounds common sense, but it may be that new researchers (for example, at Masters level) should be guided away from sensitive issues until their research skills are more developed. I say this for two reasons. First, postgraduate projects are unlikely to be extensive enough to produce very robust findings – and surely a justification for exploring the most intimate aspect of someone’s life is that the results will be helpful to others, if not the participant personally? Second, although supervised, new researchers may conduct their first ever interview discussing the most traumatic, private or embarrassing experience of an individual’s life – surely someone in a vulnerable position like this should have an experienced interviewer? My suggestion is that new researchers, particularly qualitative researchers, develop their skills exploring topics that are less sensitive in the beginning and then move on gradually to enquire into more delicate and emotionally charged subjects.
But what is ‘sensitive’ research? It could be argued that all health related research has this potential – certainly any health information is accepted as being confidential. But I do not think this is helpful and there are clearly areas of nursing research that are more sensitive than others, for example, research into abuse, sexuality, mental illness, body image and self esteem. Renzetti and Lee (1993) highlight three ‘broad areas’ that encompass and define ‘sensitive research’ which, although dated provides a useful definition that allows us to define sensitivity in research terms. It provides a quick check-list that can inform decision making in the area of postgraduate research supervision for instance. They propose that sensitive research involves studies:
Firstly, where the researcher poses an intrusive threat dealing with areas that are private, stressful or sacred. Secondly, the study of deviance and social control and involves the possibility that information may be revealed that is incriminating or stigmatising in some way. And thirdly, when research impinges on political alignments, if ‘political’ is taken in its widest sense to refer to the vested interests of powerful persons or institutions, or the exercise of coercion.
Of course, we must remember that different cultures have their own particular sensitivities and in the era of international research collaboration local knowledge can be invaluable. However, an outsider perspective on local taboo issues can be equally helpful. Things change over time too. What was sensitive may not be so now – but what was once seen as routine may now have deeply sensitive elements. As researchers we must be constantly aware of the social world around us and carefully assess the sensitive elements of our work, plan for how we may address them and also strongly justify why we are enquiring of them in the first place. It is vitally important we keep going with research that is sensitive. This is the area where the challenges lie and as nurses we are best placed to adapt our clinical skills of talking to our patients about difficult and personal issues to that of conducting research into these areas