RESULTADOS DE LA APLICACIÓN Y AUTOEVALUACIÓN

Let me introduce the research participants to you. All names used have been changed. I had initially intended that the research participants would select a name for themselves. Prior to the interviews, I decided against that, as I did not want the participants to adopt a role in a play that they had written, but to talk about their real experiences as they occurred for them. Making up pseudonyms after I had met each research participant initially caused me problems as the names I gave them were so removed from the people who so generously shared their stories, I felt I was giving them personalities that they did not have. While I could easily go to any piece of the individual transcripts and remember passages of the stories word for word, I had difficulty

remembering the names I had randomly assigned to the participants. To counteract this, I interwove their pseudonyms into each of the transcripts, and used them in any reference I made to their stories. Once I immersed myself in their stories, I forgot the research participants' real names, and began to think of them by their pseudonyms. These pseudonyms citations are used in the thesis rather than interviews numbers from one to 14.

Of the couples affected by having the spouse hospitalised in non-local tertiary centres, four wives and ten husbands required transfer to another centre. It may be a coincidence, but of these couples, only one man accompanied his wife for a short period of time. On the other hand, six of the wives

accompanied their husbands for the entire time that they were in the non-local tertiary centre; only two of the wives stayed at home. One of the women spent some time in the out-of-town centre with her husband before returning home. Traditionally, it has been seen that women have the role of caring during times of sickness (Koivula et ai., 2002), and the role of men as carers is often overlooked (Maughan et ai., 2002). Certainly, it was not in the scope of my research to determine the role of men as carers. However, it seemed that the male participants of the current study were content to leave the specialist nursing to the health professionals and wanted to reassure their wives that they could manage the household without them for a while.

The estimated age-range of the research participants was mid-thirties to mid­ seventies. At the time of interview their age did not appear important. What was important was that six of the couples had young children at some stages during the illness that required non-local tertiary hospitalisation, which affected their freedom to accompany their spouse. Five of the research participants were business people, and the non-local tertiary hospitalisation resulted in them making alternative arrangements to maintain that business, or influenced their ability to accompany their spouse. Six of the participants were in paid employment, and availability of sick leave influenced the decision of staying at home, or accompanying the spouse out-of-town. The remaining three were retired, in which case it was finances and support that influenced their decision to stay at home, or accompany the spouse.

Although some of the spouses took part in primary health activities such as monitoring cholesterol levels and cancer screening, eight couples had no warning of the life-changing occurrences that were about to occur. Of the fourteen spouses who required hospitalisation in a non-local tertiary centre, only three patients were suddenly transferred. However, the medical condition of five of the remaining eleven spouses did deteriorate suddenly, hastening the need for transfer to the tertiary setting. Two of those five were transferred from local hospitals to the tertiary settings. In addition, although the couples had little warning of the life-threatening illness, most of them had to wait for the treatment at the tertiary centre. Some of the spouses were transferred directly from the local hospital, while others were discharged and put on a waiting list.

The research participants had to make several adjustments to the world as it became when their spouse's health was compromised. Some of these adjustments had been made several years before. For example, although one of the research participants had a driver's licence, this person never really used it. They lived .140 km from the regional hospital. Her husband needed to have renal dialysis three times a week and he was too sick to drive himself to the centre of treatment. They had to rely on friends, until after some time

assistance, and had to learn how to drive. Furthermore this research participant also realised that her husband's wages (their only source of income) were in an account in his own name. (Although this aspect of the story centres on events thirty years ago, and might not occur in this day, it could occur with de facto couples maintaining their independence.) Her husband at that point was desperately ill, but she had no access to money to maintain the house. Once he was discharged from hospital, the bank account was put into joint names. She also wondered what other adjustments to the world she would have to make.

The length of time that the spouses were hospitalised in non-local tertiary centres varied from three days to eighteen weeks. My concerns about how to compare such different lengths of time are addressed in this chapter, as it became apparent that it was not the length of time that was the issue, but rather the experience during that time of having one's spouse hospitalised in a non-local setting.

Winifred was married to Robert who had long-term complications from a medical condition he acquired some years before. Therefore she was used to him being in hospital, and as she said "I don 't panic about it now, 'cos I think

'oh well, he is in the right place '" (p. ! ) .

Andrea also had lots o f experience with her husband being hospitalised out­ of-town. Eight years prior to the current study he had been transferred to a non-local tertiary centre for elective surgery. She had accompanied him on that occasion and, with her daughters, turned the trip into a type of holiday. His condition had deteriorated over the years and at times he had gone to stay with their children "to give me a breaJ(' (p. !). Unfortunately he required hospitalisation during some of these times. On one occasion, Andrea chose not to go and see him for the first few days. She had been looking forward to a break from single-handedly caring for her husband and the household, and although she did not express it, there was a feeling of resentment that he required out-of-town hospitalisation during times when he had gone to stay with other people.

Yoland had been worried about Melanie's well-being for six years prior to her needing hospitalisation out-of-town. He was unable to accompany her to have treatment, something that Melanie was still upset about. Meanwhile, Y oland was so relieved that Melanie was to receive treatment, he felt timely treatment w�s more vital than it being delayed until he could get time off work.

Carol had a long period of time accompanying her husband to the non-local tertiary centre. He had been waiting for some time to have surgery in the out­ of-town centre, but had little warning of the actual transfer.

Time away became part of a continuum of living for Nancy. William had received out-of-town treatment about five years before the time of the interview. Nancy simply said of her role at that time "] went with him [to the initial specialist appointment when the treatment plan was developed] and ] went with him for every treatment after that" (p. l ).

Zoe was fortunate that she was able to accompany her husband when he was transferred out-of-town. Zoe's husband, Trevor, was going to be transferred to a non-local tertiary centre for elective surgery. However his condition deteriorated, so his transfer was initially delayed for a few days until he was stabilised, prior to the transfer. Because it was initially planned that Trevor would have the surgery, Zoe had already arranged to have time off from her place of employment. The altered timing of the out-of-town hospitalisation resulted in Zoe having to change the travel arrangements, and paying full price for the airfare to the tertiary centre; a financial cost they had not planned on.

Financial costs also challenged Warren and Alice. Warren has had several trips to non-local tertiary centres for treatment, and each time Alice juggled her time and commitments to support Warren and the children at home. As well as meeting financial commitments, Alice has been fortunate that family support also sustained her and Warren during the times of treatment.

Paul found juggling their business and home life, including looking after two young children, a challenge during the time that Glenys was hospitalised in another centre. Like Warren and Alice, Paul and Glenys decided that he would not accompany her, as they wanted to create as much normality for the children as possible. Paul later identified that their two-year-old daughter was very confused by her mother's absence, and they speculated whether their decision was the correct one to make.

Edward and Trudie also tried to determine the best options for the entire family when Trudie required out-of-town hospitalisation. In addition, Edward, was reluctant to jeopardise his work, and struggled to balance his commitments to Trudie, and his work. He accompanied Trudie to the non­ local tertiary centre for some time, but also had to leave her there in the centre while he returned to paid employment.

Queenie found solace in her work when Gerry needed transfer to a tertiary hospital. However, her work was not in the town that she lived in, so she needed to return home and make hasty preparations so that she could support her husband. The next few weeks resulted in her travelling between hospital, home and work.

Victoria and Don also needed to change arrangements when Don was suddenly hospitalised for a longer period of time than anticipated in the non­ local tertiary centre. Don was expecting to undergo pre-admission screening tests in the tertiary centre; an expectation of being in the centre overnight only. The couple were unprepared for his extended admission.

Jan and Euan were on holiday when he identified the symptoms that resulted in a transfer to a non-local tertiary centre. Not only was their holiday ruined, the tertiary centre would not treat Euan at that time. Therefore, they needed to return home and in the subsequent period of time waited for treatment. Jan found herself watching her husband for signs of exacerbation of this medical condition until his condition deteriorated to the point where they returned to the out-of-town centre for surgery. Furthermore, Jan felt that Euan was

cheated as he had taken particular lifestyle precautions, but still developed the same condition that caused his father to die at a young age. Jan was relieved when Euan was finally treated; relief that sustained her during the days that he

was away.

Owen chose not to accompany his wife Fiona when she was transferred to a non-local tertiary centre. He had a seasonal business to run, and felt that it would not be fair to ask anybody else to run this during a particularly busy time. In addition, he knew that his wife was surrounded by support in the tertiary centre.

The last couple, Therese and Emie had long ago adjusted to the illness that resulted in Ernie requiring out-of-town hospitalisations. Despite having had long periods of time to make the adjustments, Ernie's condition suddenly deteriorated. Therese was uncertain whether he would survive the transfer.

At the time of Ernie's original illness, they had young children.