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Partners' experiences of living with a patient with lung cancer

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Elizabeth M. Walker, BSc, RN.

Respiratory Nurse Specialist, St Mary’s Hospital, Portsmouth, Hampshire

The poor prognosis of lung cancer (Box 1) not only affects the person with lung cancer but also his or her partner and family. Partners often feel distressed, angry and frustrated at the apparent lack of support and understanding offered them (Northouse and Peters-Golden, 1993), and believe the general population assume that cancer is suffered by the patient alone (Germino et al, 1995). The Department of Health (1994) has recognised the impact of lung cancer on families and states that the psychosocial aspects relating to their situation should be an integral part of cancer care. Once this understanding has been reached, the nurse may then be able to offer more specific and appropriate care to partners.

The poor prognosis of lung cancer (Box 1) not only affects the person with lung cancer but also his or her partner and family. Partners often feel distressed, angry and frustrated at the apparent lack of support and understanding offered them (Northouse and Peters-Golden, 1993), and believe the general population assume that cancer is suffered by the patient alone (Germino et al, 1995). The Department of Health (1994) has recognised the impact of lung cancer on families and states that the psychosocial aspects relating to their situation should be an integral part of cancer care. Once this understanding has been reached, the nurse may then be able to offer more specific and appropriate care to partners.



The patient’s partner is automatically expected to support the patient, both physically and emotionally, but this will not be easy to do if they are feeling unsupported themselves (Woods et al, 1989).



The reason for carrying out the project was to improve nurses’ understanding of what the experience of being married to or the long-term partner of someone with lung cancer is like. Partners’ needs are sometimes, unfortunately, less apparent (Germino et al, 1995) and quite different to those of the patient (Lewis, 1986). A phenomenological approach was used and was achieved by the use of six semi-structured interviews exploring the ‘lived experience’ of the partners of lung cancer patients.



Literature review
As this project followed a phenomenological approach, the literature relating to the subject should not be analysed until after data collection has taken place in order to reduce the chances of bias in the researcher (Baker et al, 1992). However, a brief literature review follows that expands on issues already mentioned, such as the impact of the disease on the family and the role of support in this situation. Searches were performed using Cinahl and Medline databases with secondary searches from generated reference lists.



A diagnosis of cancer affects the whole family, making life unpredictable (Lewis, 1990). The disruption to family life may well be long term, and is likely to cause much stress and suffering for all involved (Morse and Fife, 1998). Brannon (1992) suggests that any illness is a crisis not only for the person who is ill but also for their family, and Northouse and Peters-Golden (1993) describe the spouse as a co-sufferer of the disease. Often the illness situation will be a new experience for everyone involved and the demands created by this will not previously have been experienced. Coping with these changes and coming to terms with them can be very stressful (Stetz, 1987).



Kaye and Gracely (1993) believe that the spouse or partner suffers more distress than the patient, and they suggest that a patient’s stress levels will often drop following diagnosis and treatment, whereas a spouse’s stress levels will stay constantly high.



Ekberg et al (1986) suggest that nurses have a responsibility to care for the partner as well as the patient and that this is more important now than it has ever been, because partners are no longer seen as passive observers but as active participants.



As this study was concerned with exploring the experience of being the partner of a lung cancer patient, and because little is known about the subject, a qualitative methodology seemed appropriate. Nursing and a qualitative methodology have much in common. Phenomenology was the qualitative approach chosen, as it is an inductive research method investigating human experience (Jasper, 1994). In this process it is the role of the researcher to humanise research and to interpret and understand the information gathered rather than explain it.



The participants in this study were all from the researcher’s local area. All respondents had a partner with lung cancer being cared for by one of the four respiratory consultants in the local NHS trust. The type of sample was opportunistic as the participants were selected according to their ability to articulate and provide explanation (Field and Morse, 1987). Both the patient and partner were fully aware of the lung cancer diagnosis, and before asking the partner to participate in the study, permission from the patient was sought. In keeping with the aim of discovering the richness of individual experience and the fact that data collection and analysis in phenomenology is time consuming the sample size was necessarily small (Omery, 1983). Six people were interviewed before saturation occurred.



Data collection
Semi-structured interviews were chosen as a means of getting the lived experience of the respondent without contaminating data (Jasper, 1994). The advantage of this type of interview is that the researcher can obtain information required while still giving the informants the freedom to respond in whatever way they wish. The opening question of the interview was: ‘Tell me what it is like being the partner of someone with lung cancer.’ Other areas covered were about life changes, feelings towards lung cancer, personal needs and social support. The interviews were all audiotaped and transcribed verbatim immediately after. Information on non-verbal behaviour was then added.



Data analysis
The framework described by Colaizzi (1978) was used to analyse the data generated from the interviews. These steps appear to combine some structure with the philosophical meaning of phenomenology. The steps used in this method are summarised in Box 2.



Results were compared to findings in the nursing literature.



Life changesThe issue that caused most concern to the respondents when talking about how their lives had changed was how their role in the marital relationship had altered. For the respondents this usually meant changed daily responsibilities and a disruption of daily life:
‘I’ve found it’s been more of a trial because after 50 years coming up this year, I am having to do virtually… everything, and I’ve coped with it alright but I get so uptight about it all.’



For some respondents cancer had completely taken over their lives. This issue is discussed by Germino et al (1995) who talk about the partners in their study having a preoccupation with the consequences of the illness. The participants in this study talked about their constant thoughts about cancer, from the moment they wake up and right through the day:
‘I think about it every day, every night, first thing in the morning when I wake up.’



Their thoughts are about what is happening to their partner currently and what may be happening in the future. This preoccupation was not experienced by all the participants, but by those whose partners had a poorer prognosis and who had had palliative treatment. The participants whose spouses had had surgery as a potentially curative treatment had a different outlook. They were living each day as it came, and not worrying about the future so much, as one partner said:
‘Let’s enjoy our life, what we’ve got left of it now. To hell with saving and money and worrying about the kids and all that.’



The difficulties these life changes caused have implications for health professionals. It is important that nurses are aware of the changes that are happening, and how some partners will find it difficult to cope, especially with household issues. Increased awareness by the health professionals may encourage referrals for increased social support and ultimately help the spouses to adjust more effectively.



Coping mechanisms
The emotions felt by the participants in this study were extensive, and they were often part of the coping mechanism people used to deal with extremely difficult situations. The participants in this study initially could not believe that their partner had lung cancer, and it took a while for the reality of the situation to become apparent, as one respondent said:
‘When she came home and said cancer … Oh! (respondent was tearful) Took a while to sink in.’



Kubler Ross (1969) talks about people desperately seeking reassurance from fortune tellers or faith healers, and this was certainly true for some of the respondents in this study who used good luck charms to help keep them positive, and which they blamed when things started to go wrong.



Helplessness and isolation were also often discussed by the participants, and much of the literature exploring the experiences of the partners of cancer patients identifies this emotion (Kalayjian, 1989; Morse and Fife, 1998; Lewis, 1986).



Many of the respondents had experienced anger since their partner’s diagnosis, though none of them had found it overwhelming or constant. Anger was expressed towards cigarettes for causing the cancer, and also about the length of time taken to get a diagnosis.



The respondents in this study all had hope. Nobody saw the situation they were in as completely hopeless. This hope varied from hope for a cure (in some cases realistically) to a hope that symptoms would be relieved. Kubler Ross (1969) suggests that hope runs alongside the other emotions experienced and, although these other emotions will fluctuate, hope will be constant.



Respondents found it very hard to cope with watching their partner’s suffering, and not knowing how to deal with it. In this situation the nurse’s role should include giving information and educating patients and partners, as well as offering support. Information should be accessible throughout the course of the illness, and needs to cover physical and emotional issues (Northouse and Peters-Golden, 1993).



The effect of support on stress levelsConstant stress was a big concern for the participants in this study. Their stresses came from frustrations at having to cope with a changed role, to worries about their partner’s condition and the future:
‘I feel frustrated some days when my knees hurt a little bit and it gets to me. ‘Oh for goodness sake, why can’t you sit up when I’ve told you,’ I think to myself. Oh, I shouldn’t moan.’



This finding is in agreement with much of the literature, which has compared the different stresses that patients and their spouses experience during a cancer prognosis (Kalayjian, 1989; Kaye and Gracely, 1998). There seems to be little doubt that the stress a partner experiences equals that of the patient, but Kaye and Gracely (1998) suggest that the patient’s stress fluctuates while the partner’s stress levels remain constantly high. It is important that nurses are aware of this when caring for cancer patients and their families.



Ruevini (1975) believes that family and friendship systems are vital in reducing stress levels, and that social support helps the coping process and influences well-being. There was much support given to the respondents in this study from family, friends and neighbours. It was seen as a very positive aspect of the situation and the support given was viewed as vitally important, both physically and emotionally:
‘It’s very nice when you’ve got people around that know you well enough and respect you well enough to come and rally round and help.’



The support that the respondents get from their families and friends has been discussed, but what about support from the health-care professionals looking after them? There is very little formal support available for the partners of cancer patients in hospitals, and when discussed during the interviews, all respondents declared they would not be interested in ‘support groups’, or anything similar.



It may be that formal support is inappropriate for this group of partners. It may help if the health professionals caring for the family are more aware of informal ways of offering support. It is important for spouses to be encouraged to attend the outpatients department, and for their presence to be acknowledged (Northouse and Peters-Golden, 1993). During the consultation the partners’ needs should be assessed as well as those of the patient, and if further support is needed then referrals made as appropriate.



Communication issuesNone of the respondents in this study appeared able to talk to anyone about the feelings they had:
‘Yes I cried. I didn’t cry out loud, I cried inside.’



Often the interview for this study was the first time they had voiced their feelings, and for some it was very distressing. Germino et al (1995) suggest that communication between partners may well be connected to pre-cancer patterns and this would seem to make sense. If two people have never really talked to each other about their feelings, why should a diagnosis of cancer change that? Does it matter if partners do not communicate with each other? If both partners are happy with the situation then there should not be a problem. Conflicts occur when, first, there is a difference between the partners’ communication needs, which happened with at least one respondent in this study or, second, when there is a conflict between the need to share feelings and a wish to protect, reassure and comfort a partner:
‘He has put all his papers in order, but I never ask what he’s doing when he does this.’



It is useful to be aware that in-depth communication between the patient and his or her partner may not be happening, even though it is actively encouraged by health-care professionals.



Fears for the future
Anxieties about the future were an important part of the partners’ experience. These anxieties included issues such as fear when new symptoms develop, concerns for their own health, fear about the death of their partner and facing life afterwards. Lewis (1986) talks about the emotional strain a partner feels in seeing his or her partner suffer, and this was demonstrated in this study by respondents talking about wanting to see their partner’s suffering stop. One respondent commented:
‘I think in reality she will be glad to go, and in a way, yes, I will too so she doesn’t suffer any more.’



The uncertainty about how their partner will die is a cause for many worries. These worries usually relate to the unknown course of the disease, the possibility of pain and the possibility of death when not expecting it (Lewis, 1986; Lewis, 1990). Kalayjian (1989) discusses the fact that partners may also begin to have disturbing thoughts about their own mortality, and this was certainly an issue discussed by the participants in this study.



Limitations of this research
Despite efforts to pursue this study without any personal bias, Merleau-Ponty (1964) in Beck (1994) believes complete reduction of personal bias is not possible. It could therefore be argued that this study is not without researcher bias.



Another limitation is that of interview technique. As a novice researcher I found it very difficult to switch from my role of nurse to that of researcher. I found that the interviews, at times, deeply upset respondents, and when this happened I struggled to explore those issues more deeply because of the fear of causing more distress.



The sample used in this study was not a representative sample, but an opportunistic one, so it is possible that a different group of participants would have different experiences. However, data saturation did occur after six interviews, with no new categories being generated at this time.



Scientific methods of research aim to generate theories of explanation and prediction that can be generalised (Jasper, 1994). The purpose of phenomenology is to generate concepts and theories for testing by other methods. This study has provided descriptive data that needs to be explored further in order to be able to generalise the findings.



Conclusions and implications
This study has highlighted many issues and questions that need further investigation. For example, are increased stress levels related to poor communication skills between partners? Or are stress levels related to personal support networks? All this needs to be explored further, so that the care given to the whole family can be improved.



From the findings it would seem that formal support, such as the provision of self-help groups, would not be appropriate. The respondents all stated categorically that they would not want formal support. Informal support, however, is essential, as is recognising that the patient’s partner has needs, as well as the patient. It is important that health-care personnel caring for these families acknowledge the spouse’s presence during a consultation, and give them time to express their own worries and concerns, either by themselves or with their partner.



It is hoped that this description of the partner’s experience will be of interest to anyone caring for patients with lung cancer and their families and may lead to a reconsideration of the care given.



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