Pilot and initial interviews

The process of arranging the interviews was more time-consuming than I had anticipated. Various constraints influenced the number of participants who could be invited into the study at any one time. During the first phase o f pilot interviews, I approached only one family as I wanted to pilot the process in order to identify any major flaws or misgivings related to the proposed process. This one pilot interview took four months in total to organise and undertake (including transcription of the tape).

During this initial pilot interview I found it difficult not to comment on some of the responses given and on occasions I spoke and advised the family as a DTC, rather than listening and observing as a researcher. I also felt that the family saw me as a DTC and not as a researcher. Charmaz (2006:26) points out that “the interviewer is there to listen, to observe with sensitivity and to encourage the person to respond”, which should result in the participant doing most of the talking.

Whilst going through this process of transition from DTC to researcher, I found myself in a more vulnerable position than I had anticipated. Going into the home of a bereaved family as a DTC equips you with a ‘protective authority', as might a nurse's uniform or a doctor's white coat; it separates you from the patient and defines roles. Families see you as a HCP which in many ways protects you from some of the sensitive and emotional aspects of dealing with bereaved families.

I did not anticipate feeling so vulnerable when I removed my DTC hat and I was a little nervous as I was out of my comfort zone. Whilst acknowledging this, I do not believe that it had a negative effect on the interviews or the outcomes. However, as I undertook more interviews I began to adopt the role of researcher. The three initial pilot interviews proved very useful as they allowed me time to address some of the complexities that emerged from being involved in two roles. By the seventh interview, I was much more confident and more at home with my role as a researcher. I found that I was able to separate the two roles for the first time and really felt that I was first and foremost a researcher and not the DTC doing a post-donation follow up visit.

4.8.1 Listening process and my response to participant queries

My listening skills improved with each interview and it was obvious from playing the tapes back that I had begun to feel much more comfortable and was not saying very much by the fourth interview. When some of the concerns the families expressed needed the attention o f their DTC, I discussed these with the participant family member after the interview was finished and the tape was switched off. I then reported back to the key DTC who had made the initial contact with the family. Many of the families wanted to know the progress of the patient who had received an organ transplant from their relative. I had anticipated that this would emerge from many o f the interviews and a feedback system as described below was in place. This had been proposed and agreed when I first met with the DTC teams. Any operational concerns raised by the family relating to the donation process were reported

back to the relevant DTC for them to take action. The family was made aware that their enquiries would be dealt with by their key DTC.

It was originally proposed that the interviews would last no more than one hour. However, I found on a number of occasions that once the interview was finished and both myself and the participant were more relaxed, the conversation began to flow more naturally, which prompted me to switch the tape recorder back on. Following these initial interviews I allowed the interview to go on for as long as the family wished to talk and not be too rigid with the original planned one hour. I soon began to realise that the richest data came when the family were more relaxed and when a good rapport had developed between us.

4.8.2 Development of the interviewer - interviewee relationship

This section discusses some of my own self-analysis which has been essential in order to improve my skills and become an effective researcher.

Although in-depth interviews were the most appropriate method for the study and I felt very confident that I had the right experience and skills to undertake such sensitive research, I did encounter difficulties. I have had considerable experience of visiting bereaved donor families at home, which is standard practice at the request of a donor family following donation of a relative’s organs. However, I questioned my method very carefully, particularly as I was approaching a potentially vulnerable group by inviting bereaved families into this study. A major challenge in undertaking this research was the ability to separate my two roles otherwise referred to as wearing two hats, one as a researcher and the other as a DTC, which proved complex at times. Three of the interviews were complicated further as I had been the DTC on duty when their relative donated organs, and I was the DTC who had been involved in the approach for consent and facilitated the organ donor process (discussed in detail in Chapter 8).

I was constantly aware of the potential advantages and disadvantages of researching in this familiar field and questioned how well I would be able to conduct research as an insider in my own professional area and develop into

a sociological researcher. Indeed I can resonate with Corbin (Corbin and Buckle, 2009), who when referring to herself, said "As a qualitative researcher I don’t think being an insider makes me a better or worse researcher: it just makes me a different type of researcher” (2009:56).

4.8.3 Data Collection: Conducting the interview

All the participants were asked to sign the consent form (Appendix 8) prior to the interview. Before the participant signed the consent form I reiterated the purpose of the research and ensured that the family member had understood the participant information sheet (Appendix 7) that I had sent them by the post some weeks prior to the actual interview appointment. I also explained that I was there in my capacity as a researcher and not as a DTC, and that following the interview there would be time for them to discuss with me any questions they had about the organ donation, which I would take back to their key DTC.

Given the nature of the interview, enhanced sensitivity was required. Lee (1993) recognises that both the interviewer and those being interviewed are likely to feel discomfort about highly sensitive topics. Although I have years of professional clinical experience in caring for bereaved families which has furnished me with the skills required to interact confidently with the bereaved, I was still conscious that the dynamics between the family and myself were different during the research interview. With each interview I became much more comfortable with my position as a researcher, which again changed the dynamics.

All 20 interviews were conducted face to face and audio-taped. No one expressed any objection to the interview being taped. I was conscious during the interview that I should not be totally reliant on the tape and that I should listen to the participants in case the recorder broke down and I needed to rely on my memory to retrieve the data. Mason gives very good advice in the case of failed equipment when she says “not paying full attention to the interaction, there will be little you can retrieve from” (1996:77). I planned to analyse the non-verbal data that I noted down during the interview and this

required careful listening and observation. I made notes of my observations immediately after each interview in the car, which proved invaluable during data analysis.

I felt it was important that the time and place of the interview should be at the convenience of the donor family and not me as the researcher. All 20 interviews were held at a convenient location for the family, 17 were held in the privacy of the family's home, two took place in the regional DTCs office at the request of participants and one interview took place at the participant’s place of work, which was a NHS GP clinic. I was conscious that this interview might raise some very emotional issues which may have made it difficult for the participant to go straight back to work, so we arranged to conduct the interview at the end of her working day.

Going into the home of a donor family changes the dynamic of the relationship of the DTC with the donor family, and going in as a researcher changed the dynamic even further. I often felt nervous as I was conscious that I was invading their privacy to some extent. I was there for my PhD study and not because the family had requested a home visit as they sometimes do following their relative’s organ donation. The relationship between the DTC and the donor family is often complex. It could be said to be unique in that the family often identify with the DTC as they are the person who last cared for their relative and in whom they have placed a great deal o f trust.

When entering the home of the donor family, I always felt incredibly humbled and very grateful that I had been invited in. The donor family member would often start to talk about their loved one and show personal effects such as photographs or a favourite chair. They wanted to let me know that their relative was a real person, which really brought home the significance of the loss

I started each interview by asking them to tell me in their own words what they remembered about what happened at the time of their relative’s donation, placing particular emphasis on the timings of when they were asked about organ donation. During the interview I attempted to follow my interview guide

(Appendix 9). However this was not always appropriate as I did not want the participants to lose their train of thought and although I maintained the focus on the timing of the approach, I allowed the family to tell their own ‘story’.

Following the interviews all participant families were sent a thank you letter (Appendix 10).

Seven of the interviews I conducted involved more than one family member being present during the interview. As detailed in Table 4.1, these were the families of Mrs Evans, Geri, Nicola, Oscar, Jack, Henry, and Donald.

Although this did not present any issues for me during the interview, I did encounter some minor challenges during the initial analysis and transcription of the recorded interview data from these seven families. The transcription was particularly challenging as participants tended to talk over each other which made it difficult in some parts to understand what had been said.

During one interview it seemed that one of the participants was actually

‘reconstructing’ the event as she recounted it, as some of what she said happened was difficult to comprehend given that the participant was not at the hospital during the time period she was recounting. Another challenge was when one family member was dominant over his two adult children and would not allow them to tell their story, which may have meant I did not get their full version of accounts. As well as challenges of having more than one person present during the interview, there were also advantages, as when one family member could not recall what had happened, another family member could. In summary, although there were advantages and disadvantages in having more than one family member present at the interview, apart from lengthening the transcription process, there were no major concerns.