Researching sensitive and emotive topics: The participants’ voice

Abstract

There are different groups in society who may be considered vulnerable, for example those experiencing mental or physical health issues, learning disabilities, prisoners or children. There are, however, other groups in society who may also be regarded as vulnerable, such as those who are bereaved. Vulnerability in relation to the bereaved occurs as a result of experiencing a normal life event, death or a loss. In this situation vulnerability may be transient and, depending upon the management of the bereavement, generally temporary. Unlike the aforementioned groups, participants required for this type of research (bereavement, death and dying) are able to consent themselves into projects, and the capacity to do so is not an issue. Undertaking research with those who may be considered vulnerable into sensitive, emotive topics such as death and dying can create difficulties for the National Research Ethics Service (NRES), making it difficult to get approval for such studies. It appears that the ethical issues are concerned with not wishing to cause distress to participants when asked for research purposes to recollect what for some may have been emotionally challenging and traumatic events. The article offers a narrative, reflective account of the above from several perspectives: being employed as a contract researcher in a university; having experience of being an active member of a National Health Service Research Ethics Committee; and later assuming the role of full-time postgraduate (PhD) student requiring ethical approval to undertake research with what may be considered a vulnerable group involving a sensitive and emotive topic. Valuable insights from participants – their views on participation in an emotive research project and good practice in research having been explored via questionnaire – are highlighted and discussed.

Background

I have been a member of the National Research Ethics Service for a number of years. My initial appointment was as an expert member whilst employed as a Research Nurse at a university in the north-west of England responsible for co-ordinating two different quantitative projects focusing on different aspects of dementia. I had previous extensive clinical experience as a Registered Mental Health Nurse (RMN) of working with this group and their carers in both the National Health Service and private sector. Moving into research was a change in career direction. Developing experience and knowledge regarding the practice of research led to curiosity about ‘gatekeepers’ (Payne and Field, 2004) about whom colleagues were often overheard complaining. This was mostly as a result of applications not being given ethical approval. There were also narratives and anecdotes in abundance of colleagues’ experiences when attending committee meetings. These meetings were interpreted by colleagues as terrifying, negative and where possible something to be avoided at all costs in the future.

There appeared to be a ‘them’ (REC members) and ‘us’ (researchers) culture. The need to establish what really occurred behind closed doors and why this group of people (RECs) were so feared amongst the research community continued to feed curiosity. An application to become a member of what was then COREC was borne out of this curiosity. This was successful and the role of expert member on a National Health Service Research Ethics Committee commenced, albeit with some trepidation about what I was about to experience.

Over time many projects came and went, many investigators attended meetings, confidence in the role increased and the realization of what an ethics committee’s function is began to dawn. Observing and practising from the other side of the fence was becoming crucial to understanding the research process and ultimate purpose of the ethics service: supporting researchers and ensuring all possible steps are taken to undertake an ethical piece of work resulting at some point in benefits for society. As a committee member I was able to relay to researchers within my department reassurances about the facilitative and supportive role and function of ethics committees. This facilitated breaking down some of the barriers, misunderstandings and misinterpretations amongst my colleagues when considering or making further applications for approval.

During my first term as a member, several student projects came before the committee. There were certain times of year when the majority of projects received for review were submitted by students. Rarely did supervisors accompany their students, who almost always entered the room appearing like lambs to the slaughter – the fear on their faces was permeable. On these occasions, witnessing them leave with a smile and seeming eternally grateful for advice and information they received created immense pleasure amongst committee members. There were, of course, other times when the quality of projects was unacceptable and major changes to protocols and documentation were going to be required in order for investigators, student or otherwise, to acquire the ‘elusive’ ethical approval.

As the term progressed, more and more projects considered ‘emotive’ and including vulnerable populations, usually mental health service users, were reviewed by the committee. Ethical issues raised tended to involve introducing or increasing the risk of causing distress to participants. It became apparent that there was what appeared to be a paternalistic nature of some committee members, who felt that inducing distress or increasing the risk for this to occur was unethical. The wider picture and context of how this may occur – for what purpose, how it would be managed, by whom, any positive aspects of this and participants’ own ability to decline the invitation to participate – appeared to elude some members. On these occasions such projects were frequently the source of much debate amongst committee members, resulting in many long discussions and disagreements.

Undergraduate and postgraduate study had been undertaken by myself on two previous occasions. These culminated in small empirical pieces of research, and neither had resulted in actual attendance at an ethics committee meeting. After a number of years as a volunteer for the NHS Research Ethics Service I found myself in the role of full-time student. This necessitated an application to an ethics committee for approval to undertake an exploratory qualitative research project leading to a PhD. The topic of study was one considered sensitive and emotive: death, dying and end-of-life care. The study population could be considered vulnerable by virtue of being bereaved informal carers of people with dementia. For most participants they had been informal carers over many years, including the time around the death of their loved one – a situation often resulting in poor physical and mental health outcomes for informal carers (Almberg et al., 1998; Bell et al., 2001; Cahill and Shapiro, 1998; Department of Health, 2008). Participants were recruited from outside the NHS jurisdiction, and therefore ethical approval to undertake the study was obtained from a full University Research Ethics Committee (UREC). The process for seeking ethical approval from the UREC is rigorous, and similar to NRES applications. One difference at this particular university was students not being permitted to attend without supervisor/s. As a result, queries regarding the application (not surprisingly related to the risk of inducing distress) were sent to both supervisor and student via email. Once these were satisfied, ethical approval was granted.

This article presents and discusses results from a feedback questionnaire administered post-interview as part of the project mentioned above. Whilst there is reference to vulnerability and vulnerable groups, the main focus of the article is the issue of researching sensitive and emotive topics. To facilitate a greater understanding, specific details of the questionnaire aspect of the project are outlined below.

Aims

Establish how a group of people considered vulnerable – by nature of being an informal carer for a person with a life-limiting illness (dementia) and subsequently being bereaved – felt about being involved in a research study exploring such emotive issues as experiences of death and dying. Results from the questionnaire would help inform the development of future projects of a similar nature.

Methods

Ethical approval was obtained from a UREC to interview participants on one occasion about their experiences of caring for someone with dementia in the last year of their lives and time surrounding death (n = 41). Following interview, each participant was asked to complete a brief anonymous feedback questionnaire (Barnett, 2001) on their experience of being involved in the project and being interviewed. A stamped addressed envelope was provided to facilitate return of this to the researcher. Questionnaires not returned were taken as an indication participants did not wish to be involved in this aspect of the research study. Owing to the small number of questionnaires involved and the qualitative nature of information obtained, the researcher analysed these independently of any software.

Results

Total sample: n = 41, female n = 32, male n = 9; ages ranged from 18 to 86 years, participants came from varied socio-economic backgrounds, and the relationship to the deceased was mostly sibling or spouse. Out of the total sample, 85% (31) of questionnaires were returned; 90% (28) were glad they participated; 10% (3) had no strong feelings either way about participation; 32% (10) did not find the interview upsetting; 68% (21) found the interview upsetting but cathartic. Qualitative aspects from the questionnaires are presented and discussed below.

Interviews for the research project had taken place prior to the questionnaires being given to participants. The questionnaire asked specific questions of participants regarding how participation had made them feel and what their experiences were.

A number of participants stated that they found the interview upsetting but cathartic in nature. The opportunity to talk to an independent person (researcher) about their experiences was welcomed. For some their participation had enabled reflection and re-appraisal of sequences of events and actions which had occurred at the time.

As part of the questionnaire participants were asked if they found telling their story upsetting in any way. Below are some of the responses/comments from the questionnaires:

Obviously, when I was recalling some very poignant moments I felt very emotional and I was distressed. In a way it was a relief to ventilate some deep emotions, especially to a sympathetic and understanding listener.

Only from bringing back memories but I feel the experience was beneficial for me.

It was the first time I had discussed my feelings for my mother and the circumstances of her death. I felt that I was in a secure environment with a sympathetic interviewer.

I did, but I was glad that I took part; it was emotional as I loved my dad very much, it is good to talk and I hope it helps the study.

Although I felt emotional at times, it was ok.

The responses above indicate that participants interpreted interviews as beneficial, despite there being elements of upset and distress. It appears that participants expected and accepted that the interview might be difficult, raising emotions within them, but that this was in fact acceptable to them. The responses above also demonstrate a positive relationship between researcher and participants. This is interpreted as indicative of potential benefits and not the anticipated negative effects to participating in such sensitive and emotive research projects.

Participants were given the opportunity in the research project to write down their story or be interviewed on one occasion by the researcher. Only one participant chose to write their story, which was as a result of time constraints for this person.

Time constraints of potential participants can be one of the issues affecting recruitment into research studies in general. Compensation payments are made in some studies on occasions in acknowledgement and recognition of this. This raises other ethical issues for committees when considering type and amount of payment. To avoid this, to reduce the research burden of participants and, in an attempt to improve recruitment into the project, the location and time of day of interviews was suggested and chosen by participants. This ensured that they were interviewed at a time and place convenient to themselves and with which they would hopefully feel comfortable.

A small number of participants (n = 2) chose to be interviewed on neutral territory: one at the local branch of a charitable organization and one at a local hospice. Eight participants chose to be interviewed at their place of work, mostly for convenience purposes. All other participants chose to be interviewed within their own homes. Those who chose face-to-face interviews were invited to comment on this in the questionnaire. Below are some of the comments made:

Interviewer and setting created as relaxed an atmosphere as possible.

The interviewer was relaxed, friendly and sensitive to my moments of emotional recollection. I did not find anything about the interview, which was in my own home at a mutual time, negative in any way.

I was glad I was able to do the interview in my own home, I felt comfortable.

The interview was very convenient to myself.

I prefer a one to one interview; it is very personal, comforting to have someone with you if you get emotional.

These responses appear to indicate that participants welcomed and valued the opportunity to be in control of the interview and process, including selecting where and when this would take place (Grinyer, 2002).

Some participants also used the questionnaire as an opportunity to make comments about my role as the interviewer, and all of these were positive.

Interview very professional and I felt very much at ease … no questions asked were either too probing or unsympathetic.

I found the interview done with great kindness and expertise; I hope I have been of help.

The interview was very well conducted, the interviewer being very pleasant and understanding.

The interviewer was professional and sensitive. She also explained in full what was about to happen and what would be done with the information she took from me.

The comments above offer valuable insights for NRES committee members regarding what skills and experience researchers need to possess. It also helps to inform committee members about the type of skills and experience they need to be alert for on researchers’ curriculum vitaes when considering sensitive and emotive projects, the risk of distress and its management along the research process.

The questionnaire also asked participants if they felt it was appropriate to ask people to be involved in such emotive research projects. There was a ‘Yes’/‘No’ option response to this question and space for comments. Only one participant did not make a comment on this part of the questionnaire but answered ‘Yes’ to the question regarding appropriateness of inclusion in such emotive research. The comments below are a selection from this aspect of the questionnaire:

It is important to further our understanding of these aspects of our lives that can so often be ignored because they are painful… it is important that they are shared if they can contribute to more sensitive care and support in the future and a better more dignified care for people with dementia.

If by my having this interview I can help someone else not have to go through what I did, if measures can be put in place to alleviate the pain I suffered then it will all be worthwhile.

In order to make future progress, research is vital and needs to be continued to help more people as we are all living longer and therefore dementia will only increase.

Again, the above offers valuable insights into participants’ and potential participants’ views on research in general and researching emotive and sensitive topics.

Discussion

As identified earlier, when referring to those considered vulnerable it could be argued for some that vulnerability is transient in nature. It may be as a result of a life event including the death of a loved one or being in the position of an informal carer for someone with a life-limiting illness such as dementia. When thinking about the term ‘vulnerable’, words such as weak, defenceless and helpless immediately spring to mind, along with a picture of someone requiring protection (Oxford Mini Dictionary, 2002). ‘Sensitive’ is a term used to describe something that may be considered secret, confidential, fragile and delicate. Therefore if we combine the two for research purposes it may come as no surprise that people falling into this combined category may be viewed by some as being in need of protection from research (Payne and Field, 2004).

For the purpose of this article and discussion, death and dying are considered in the context of being sensitive and emotive topics to research. Obtaining ethical approval for such projects can be problematic, and recruitment may be difficult.

There are references in the literature to what has been interpreted as the obstructive and paternalistic nature of ethics committees that colleagues complained about (Chalmers, 2011; Gallagher, 2010; Juritzen et al., 2011; Panagua, 2012). The process of human research is described by some as highly regulated, rigorous, detail-oriented or potentially harmful, but most of all hopefully beneficial (Arford et al., 2008). The ethical standards and assessments of researchers themselves are generally not regarded as sufficient to protect individuals against abuse or from exposure to hazards or strains or prevent damaging consequences of research to society as a whole (Juritzen et al., 2011). The post-war period saw the introduction of a number of guidelines aimed at prevention of abuse of individuals and promotion of good scientific practices in relation to research. The primary role of the ethics committees in the protection of the welfare of research participants is not contested (Chalmers, 2011). Committees serve an important function in the protection of the public from harmful or exploitative research. It can be argued that they are necessary for the monitoring of researchers and their practices if we are to avoid repetition of atrocities that occurred in the past.

There are also references in the literature to the ‘power’ that ethics committees wield over researchers, their activities and those whom they are intended to protect, i.e. participants (Juritzen et al., 2011) It can be argued that the emphasis placed upon voluntary informed consent is based upon a necessity to protect participants from unacceptable research practices – something terrible or evil (Juritzen et al., 2011). Committees making decisions on behalf of potentially vulnerable people or groups about being studied may exclude large groups from research. Doing so may expose them to the concealment of unacceptable, poor practices or prevent them from participating in the progress and development that research could have provided. The paternalistic interventions of ethics committees could thereby have unintended effects by preventing the participation of those who may be considered vulnerable but who are able to decide for themselves whether to be involved in emotive and sensitive topics.

Alexander (2010) suggests that in the past ethics committees and researchers have avoided research among vulnerable people and groups because of prevailing perceptions that such research is unethical and difficult. They go on further to argue that it is unethical not to research vulnerable populations. By excluding vulnerable people and groups from research endeavours they are being deprived of the benefits to be gained from research. They also suggest that people in vulnerable populations are being subjected to paternalistic attitudes of those who believe they know what is in the best interests of others who are, in fact, capable of making their own informed choices.

When considering recruitment into studies focusing on emotive and sensitive topics, potential participants may feel the risk of becoming distressed when re-living their experience too great and not something they wish to expose themselves to, and therefore decline the invitation to participate. Participants in the project were therefore given both written and verbal information about the study on different occasions, in the form of initial advertising, via telephone, email and post. Prior to consent and interviews commencing, the Patient Information Sheet was discussed at length. Participants were given every opportunity to make an informed choice for themselves about participation. This was commented upon by a participant in the feedback questionnaire (page 7).

Obtaining ethical approval for the project had not been without challenge from the UREC. This was related to the potential for distress amongst participants to occur, and required reassurances that research personnel had the appropriate qualifications and experience to manage this in these circumstances, and there was a clear strategy in place in the event of distress occurring. This information was contained in the UREC application. Details of my background (mental health) and experience of working with people in distress were outlined, along with a detailed protocol for the management of distress should this occur. Both project supervisors had similar backgrounds, but the UREC required extra reassurance. This reassurance can be given verbally by researchers when attending committee meetings. Committee co-ordinators and members need to insist on this kind of information being available on application for review. This will include details on backgrounds, research experience and any training specific to the project topic. It is not paternalistic to decline or defer approval in circumstances where these questions or concerns cannot be satisfied. It is unethical to approve a project that has not satisfied the committee that the research personnel have the necessary skills and qualifications required to conduct ethical research involving sensitive and emotive topics.

Despite the ethical concerns raised by the reviewing committee about distress occurring, we can see from the earlier comments from the questionnaires that this appeared to be an acceptable risk participants were prepared to take. Based upon the information they had received from me as the researcher, including what would happen if they became upset, they were able to make an informed choice about participation. This group were happy to be researched, were competent and able to consent themselves into the study or decline if they wished, and a significant number commented that they actually derived benefits from participation and enjoyed this. This would not have occurred had ethical approval not been granted on the grounds that the topic was too emotive and sensitive to research and the risk of inducing distress too great.

A central feature of the majority of qualitative research is the interactive nature of data collection. It generally involves meaningful communication between individuals conducting the research and their participants (Buckle et al., 2010). This core aspect of data collection is frequently identified as the most concerning and potentially harmful aspect of qualitative bereavement research. Despite this, the benefits to participants of taking part in qualitative research involving interviewing are prominent in the literature (Beck, 2006; Birch and Miller, 2000; Buckle et al., 2010; Cooke and Bosley, 1995; Payne and Field, 2004). As noted in the comments from participants earlier, they clearly appeared to derive benefit from having an opportunity to speak with someone (researcher) independent of them emotionally and their situation about what had occurred and the impact upon them at that time and into their futures. Whilst this is not the explicit intention of this kind of research, is this a bad thing when this occurs?

There is a tendency to conceptualize the bereaved as vulnerable and in need of protection from research or during the process (Payne and Field, 2004). Instead of thinking the research interview exploring complex personal issues pertaining to death, grief and bereavement may result in harm, it may be more helpful to think of research and process with this group in terms of potential benefits for participants when therapeutic aspects of the research interview are considered. There is evidence in the literature to suggest that participants value involvement in research into death and dying, in particular. The process of telling their stories was reported as therapeutic despite the emotional demands of recalling painful memories for research purposes. The results presented in this article from the questionnaire element of the study support this and contribute to the literature. Outcomes from the research such as publications are also viewed as significant by participants and interpreted as lasting memories to their loved ones (Grinyer, 2004).

Conclusion

Research into bereavement and experiences of death, dying and care received at this difficult time is crucial. It will help facilitate implementation of the strategies, directives and guidance that are available to follow in relation to the provision of good end-of-life care.

Giving favourable opinions to research projects sensitive and emotive in nature and which may involve those considered vulnerable in our society is necessary and integral to improving service provision. This includes research into experiences of death and dying across a range of care environments and caring circumstances. In such circumstances the question for NRES and committee members is how best researchers can include and not exclude these groups in an ethical manner.

It is important to hear the voices of those experiencing different terminal illnesses and end-of-life care as dying and death approaches. This is necessary if service provision is to meet need, demand, and the requirements and recommendations of recent legislation and directives. The role of NRES is therefore not to restrict or inhibit such projects, but rather to ensure that this is done in a safe, timely, sensitive and ethical manner – striving to ensure that those undertaking such projects have the necessary experience and qualifications to do so in a manner that reduces the risk of harm to participants. This may necessitate an increase in training for research personnel in order to satisfy the ethics community that the risk of harm to potential participants is minimal. In order for this to occur, the research and ethics communities need to collaborate and communicate more effectively to identify training needs.