When interactional researchers step out into the medical world to collect data, they might be recording people in discomfort, pain or distress. As well as the researchers’ own conscience and ethics,  institutional and legal rules should ensure that dignity and propriety are respected. Wendy Archer gives a personal and topical account of her own work in the very sensitive environment of end-of-life care.

Just over a year ago, I began working on a video-based conversation analytic study of communication in hospice therapy sessions involving end of life care specialist physiotherapists and occupational therapists and patients with terminal illness.

Led by Ruth Parry, and funded by the National Institute for Health Research (NIHR), the VERDIS-AHP study will shortly recruit its first participants having recently received ethics approval; but as healthcare communication researchers will be aware, setting up a study in such a sensitive setting, negotiating access and approaching busy practitioners – though eventually rewarding – is very challenging.

Permission to record very sensitive health encounters

As someone new to health services research, I found that the range of permissions needed to carry out research with NHS patients seemed initially overwhelming. Alongside clearance permissions (e.g. Occupational Health, Disclosure & Barring Service), certifications (e.g. Good Clinical Practice, Valid Informed Consent) and confidentiality agreements, a Letter of Access was needed establishing my researcher credentials and giving me access to the research site. These requirements forewarned of the challenges that would need to be addressed during the project and gave an initial sense of the social organization of the setting and the concerns of research participants [1].

Getting in but not getting in the way

Once we secured initial permissions, the next step was negotiating the physiotherapists’ and occupational therapists’ involvement. That proved to be lengthy and protracted, with much work going into specifying exactly how we would approach, recruit, and work with therapists and with the hospice as a whole. After all, the therapists had jobs to do, and patients to attend to; were we simply going to get in the way?

To facilitate this and raise awareness of our research plans, I drew on existing relationships established during a previous study [2] carried out by Ruth Parry and Marco Pino. Getting to know the medical and administrative staff who had been involved in this earlier study was a crucial first step in gaining the trust and cooperation of key institutional staff.  We needed to identify which working relationships would be helpful. These relationships turned out to be instrumental not only in gaining access, but even more positively in shaping and refining our recruitment and data collection procedures. And – a huge plus –  in navigating the steps involved to secure ethics approval under the new ‘streamlined’ HRA approvals system for NHS research.

Being there and being accepted

I spent some time becoming familiar with the hospice environment, being around, hanging out, being visible, and being there for a reason. I set up meetings with the multi-disciplinary team, got myself introduced to key staff, and arranged to shadow physiotherapists and occupational therapists during their  ward rounds and therapy sessions. I hoped to become part of the furniture – functional, familiar and Not In The Way.

The observations of the physiotherapists’ and occupational therapists’ work on ward rounds and with patients was beneficial on several levels. Seeing, right up close, the actual details of their daily routines showed me the many facets of the therapists’ roles, and gave me insight into the nature of both the scheduled and the more acutely planned therapy sessions at the hospice. I was able to see that their work frequently involved multiple participants: consultants, doctors, nurses, discharge liaison and social workers delivering joint sessions with therapists, as well as relatives, friends or carers accompanying patients for therapy. This reality was complex – and made me rethink some of my assumptions and my research methodology.

My frequent presence in the hospice also provided opportunities to seek the views and opinions of therapy staff on the many practical issues which would be key to developing our study protocol and applying for ethics approval. This was especially important in detailing how – with minimal disruption to ward and clinic activities – consent processes with therapists and patients might be carried out and recording equipment [3] could be set up.

Observing consultations and therapy sessions was also valuable in ways that I had not anticipated: by providing insight into the nature of the hospice data that would be collected, the challenges of performing detailed CA analysis on ‘difficult’ conversations and the need to develop mechanisms of support for dealing with this became clear.

My own role

Besides the practicalities of negotiating aspects of the setting, it was also important to negotiate my own role within the hospice.

To dispel understandable resistance and fears about ‘exposure’ [2], I decided that flexibility and daily attendance at the hospice over several days in succession would be helpful. I tried to get across that our research aims were neither critical nor evaluative of the activities we hoped to observe. My spending long periods of time at the hospice helped me build trusting relationships with therapists. It normalised my presence in the hospice and minimised my identity as an external, alien researcher.

But maximising support for the research also meant raising awareness of the general purpose of our study [4] and outlining our plans to make, analyse, store and archive recordings for future teaching and research purposes whilst emphasising the non-critical nature of our CA approach. This involved meeting with physiotherapists and occupational therapists both collectively and individually to discuss their willingness to participate, to answer questions about the research and to reassure them that, in line with previous research [2], our study design was ethically sound and our methods acceptable to the stakeholders from whom we had sought advice (e.g. study advisors, representatives from patient and public involvement / engagement groups).

Looking ahead …

On the “cost” side, gaining permission, negotiating access and securing support presented constantly emerging challenges and required significant time investment. On the “benefit” side, though, decisions taken on the basis of situational awareness and knowledge of the setting and its participants positively influenced both the research design and our recruitment and data collection plans. So when it came to the crunch of official approval, our protocol received favourable review by the ethics committee and the support of therapists and staff at our chosen research site. We could go ahead. Without all the preliminary spadework, that would not have happened.

References

1. Atkinson, P. and M. Hammersley, Ethnography: principles in practice. 3rd ed. 2007, London: Routledge.
2. Parry, R., et al., Acceptability and design of video-based research on healthcare communication: Evidence and recommendations. Patient Education and Counseling, 2016. 99(8): p. 1271-1284.
3. Parry, R., Notes on equipment for recording and analysing. 2013.
4. ten Have, P., Doing conversation analysis: a practical guide. 2nd ed. 2007, London: Sage.