FIRMA TRANSCRIPSIONAL DE HUH-7 EN PRESENCIA DE AAS.

One strategy that enhances a sense of trust and minimises fear of the unknown is the personal provision of information (Coulter, 1 989; Dewar & Morse, 1 995; Fareed, 1 996; Medland & Estwing Ferrans, 1 998; Stewart et aI., 2000). Being informed about what is going on is essential to retaining control and providing support when family members are critically ill (Mend onc a & Warren, 1 998; Minicucci, 1 998). One major contributing factor of distress expressed by spouses of those having coronary bypass surgery is the lack of information related to the expectations of rehabilitation and projected progress after surgery (Miller & Wikoff, 1 989; Thompson & Cordle, 1 988; Turton, 1 998).

As discussed in Section 2.3 .2, information, both verbal and written is essential to foster adherence to treatment on discharge, and to relieve the supporting spouse 's anxiety (Turton, 1 998). There are arguments that written information is necessary because there is too much information for the couples to absorb during times of stress (Azoulay et aI., 2002). In contrast, in situations where family me1llbers are given information leafletS alone, nearly a quarter of the research population did

not fully understand the implications of the diagnosis (Mahler & Kulik, 2002).

This is despite the leaflet being prepared by the professionals who worked in that

informs family members and subsequently benefits the patient's rehabilitation processes as video taped information is more informative than written information. Ironically, Trevor and Zoe felt that the books and information video they were given to view were a substitute for information from the nurses. Having

information via videos meant that the information was not personalised. Trevor and Zoe had limited opportunities to have their own questions addressed. This added to their sense of Being-without-others:

A lot of the time we were left alone. We were given the booklet to read, a video to watch [but no nurses spent time with us telling us what would happen] . . . (Zoe, p.S).

Another couple, who felt that they had not been given sufficient information to prepare them for discharge, also experienced a lack of information. That lack led to perceptions that there was no care at all:

. . . And there was a long weekend in the middle of his stay, so he had not seen any physios; nobody over that length of time. They didn 't tell us _{anything about what he should be doing, exercises or that.}

Nothing, we were told nothing (Victoria, pA).

Participants did not always find that the health professionals focussed on them during time of consultation, which reinforced that they were one of many. In empathetic states Da-sein must connect with others' Da-sein; empathy is also dependent upon understanding oneself (Heidegger, 1 962). However, nurses report that, because of overwhelming workloads and time, they are unable to get close to their patients (Strandberg et aI., 2002). The New Zealand health reforms have also resulted in increased casualisation of staff and fewer permanent nurses struggling to manage increasing workloads (Brinkman, 2002), leading to situations where nurses question if there is time to attend to the patient as an individual (Melnechenko, 2003). In the current study, participants reported that the nurses did not have the time to make that connection with the individual or focus on one patient who was ready for discharge. For example, one research participant reported that she had to make her own arrangements to return home when her husband was ready for discharge. The nurse refused to let her use the ward phone, as the nurse was fearful that the research participant wanted the District Health Board to fund the travel. Instead of listening to what the research participant really wanted, the nurse called in the social worker.

A lack of individual focus was also apparent when medical consultants monitored patients' progress in the wards. The individual patient and supporting spouse wanted progress reports. If the research participants could not be present during the consultant's visit, they had difficulty getting this information, or ascertaining what progress had been made. The research participants believed their needs for information, and individuality were minimised:

If I was there and the surgeon was doing his rounds, it was almost .. . ! mean it probably wasn 't looming large in his mind, but in our mind it did loom large . . . That kind of a feeling really. Unless you were on the spot when the surgeon did his rounds, you didn 't see him, and didn 't get that kind of information. Nurses quite often were reluctant to say

what the doctor said. I do think that it 's a small, well it 's not small .. .!t 's an important aspect, making sure that wife or partner is kept up-to-date with all the information, and be prepared to answer the same questions again. That was a problem. I'd ask him, "now what did the doctor say? " He 'd tell me, and down the track, we 'd maybe talk about it again and I'd say, "I can 't remember you saying that " or he 'd say the same thing. And then we were not sure what had been said at all. I think everybody takes what they know and understand from a conversation and it is only when you are down the track that you start questioning each other and you think, "oh, maybe I didn 't understand, or didn 't hear that bit " . .. (Winifred, p.2).

Another research participant explained that a health professional's lack of concern, added to the sense of isolation in the hospital-world that the research participants were experiencing during this time:

I can remember the kids being there then, and there was a young doctor on, and they did not ... there was something about this young guy that they did not like, did not like him at all. They said "Mum, he is not . . . He isjust a smart arse ". They were really upset with him. And I was telling them, "sh. " They were not happy with him at all. And we were told that he [my husband] was to see [a specialist]. And of course I was a receptionist at the local doctor 's surgery, and I knew [this specialist] usually assessed really old people .. . Why is he

[my husband] seeing this doctor? I couldn 't believe that he was

going to see a geriatrician. But it was to assess how we were going, and how we were coping with things. That was just prior, just before he wasjlown [on to the second centre] (Therese, p.4).

Had the house surgeon3 explained to the family the likelihood of treatment at the tertiary centre, and the rationale for the geriatrician referral, they may have felt cared for as a family unit, rather than confused, and subsequently angry.

Knowing, or not knowing, what to expect also influenced the degree to which the

research participants or their spouses felt that they were with-others and were able

to control the situation. One research participant's spouse spoke of how the lack of knowledge lessened the locus of control in overcoming cancer:

. . . if I was going to die of cancer next week, I would rather them tell me, because I can deal with it. I mightn 't like it, but I can deal with it. It 's when we don 't know. Like when I had [original cancer] and my lung is not working properly at the moment and .. . nobody will bloody give me any answers and so it makes me angry and frustrated.

Whereas if they just do everything that needs doing and tell me, I 'd go, "Oh OK, that 's fine ". Now I know I've got to do this, or do that or whatever, but, yeah I didn 't know what would be going on [when I

first had radiotherapy]' I thought [when I knew that I was going there

to have it], "oh well ". I mean [a friend, who was coming with me]

and I even talked about it. . . "Once they 've done your bit of treatment for the day, we will just go uptown and do a bit of shopping and we

have a look around the shops ". I didn 't know that I was going to be stuck in a tiny little room on my own, and that nobody was allowed over the threshold, and that when anyone came to the door, I would have to be over that side of the room. I didn 't know that . .. (Melanie,

p.4).

7.3. 4 The Spouse 's Reality Of Dis-Ease Adding To Being-Without-Others.