Ethical Issues

Ethics approval for undertaking this study was acquired through Massey University Human Ethics Committee and the Hawke' s Bay Ethics Committee. Although none of the spouses were to be current in-patients in the non-local tertiary centres, the Hawke's Bay Ethics Committee requested that I notify them prior to conducting initial interviews. This was so that the areas in which the spouse had been treated could be identified, enabling the local ethics committee to notify the relevant area ethics committee that the research was being conducted.

However it became apparent during the first interview that I was not able to become privy to the site of the non-local tertiary hospitalisation until the interview was in progress. In addition, the site of the hospitalisation would not form part of the findings. On further correspondence with the local ethics committee it was suggested that I formally inform the regional ethics

committees in the four areas that the spouses would likely be hospitalised in, of the research. Having complied with this requirement, I continued with the interviews.

After some initial interviews, I became concerned that I would be unable to maintain confidentiality for two reasons. Early research participants lived in one particular province, and if they had been treated at the local hospital prior to the transfer, there was a danger that their situation could be recognised. The participants had been transferred to Palmerston North, Wellington and Auckland for treatment. I became concerned that it may be easy to identify

them if I discussed the length of stay, or the specific medical condition that caused hospitalisation. On the other hand, I did not want their stories to become so vague that they became meaningless. Therefore, after additional correspondence with the Hawke's Bay Ethics Committee, they forwarded approval for me to interview participants from two other District Health Boards.

Of the 1 4 individuals or couples affected by a transfer to a non-local tertiary centre, and who took part in this research, six of the spouses had cancer, five had heart conditions, while the remaining three had other conditions that required treatment in non-local tertiary hospitals. In all, these research participants were from six different geographical areas, and the spouses had been transferred to five centres, including some being transferred to more than one centre for the same illness. Although the spouses of the research

participants had differing medical conditions, aspects of their stories that they shared were similar.

All research participants had the opportunity of having a support person present during the time of interview. It was a coincidence, rather than for support, that eight of the research participants had their spouse there for either one or two interviews. This privileged me to hear things from both

perspectives, but there were times when I also wanted to hear things from the research participant's perspective only, and had to negotiate a time to revisit, or explore the experiences with the research participant alone.

I had also arranged access to counselling should the research participants find that recalling their experiences of having their spouse hospitalised in the non­ local tertiary setting caused distress. After my second interview I did not

emphasise this, as that second participant became apprehensive that she was going to be questioned until she became upset and traumatised. When approaching people, most did not think that they would need a counsellor, as they felt they "had nothing to say"; they "just got on with it".

Each interview was begun with the same question "Tell me about the events to

[your spouse} needing out-oJ-town hospitalisation ". Despite the claims that

they had little to contribute to the research, the transcripts reflected that I would often ask the opening question, and apart from using facilitative communication techniques, would not ask another question for some two or three pages. There is obviously comfort in having someone who wanted to hear the experiences of hospitalisation from the supporting spouse's perspective. After some initial surprise that someone was interested, the research participants told their stories in the hope that others may learn from the experience.

After I had presented some of my research findings at a seminar, two people approached me and asked me if they could take part. Both talked about the experiences of having a spouse hospitalised in a non-local tertiary setting. However although she was interviewed about her husband's non-local hospitalisation, this second person wanted to talk more about her experiences of supporting her daughter who was currently undergoing treatment. This research participant had felt in control when her husband had been

hospitalised in a non-local tertiary centre. In contrast, she felt quite powerless in dealing with her daughter's illness, and providing support from a distance, and said, "it is nice to talk to someone who is interested". Her need to tell me about her daughter also made me realise that there are commonalities in having loved ones hospitalised in non-local tertiary centres, and the stories I was hearing were not unique to spouses. As identified this research

participant's sense of control that had sustained her during the time her husband was hospitalized non-locally, but not during the time that her daughter was hospitalized out-of-town.