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.
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.
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.
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.
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.
‘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.’
‘I think about it every day, every night, first thing in the morning when I wake up.’
‘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 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.’
‘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.’
‘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.’
‘Yes I cried. I didn’t cry out loud, I cried inside.’
‘He has put all his papers in order, but I never ask what he’s doing when he does this.’
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.’
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.
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.
Baker, C, Wuest, J., Stern, P.N. (1992) Method slurring: the grounded theory/ phenomenological example. Journal of Advanced Nursing 17: 1355-1360.
Beck, T.C. (1994) Phenomenology: its use in nursing research. International Journal of Nursing Studies 31: 6, 499-510.
Brannon, L. (1992) Health Psychology: An introduction to behaviour and health. Belmont, Ca: Wadsworth Publishing.
Cancer Research Campaign. (1996) Lung Cancer and Smoking (Factsheet 2). London: Cancer Research Campaign.
Colaizzi, P.F. (1978) Psychological research as the phenomenologist views it. In: Valle, R.S., King, M. (eds). Existential Phenomenological Alternatives for Psychology. New York, NY: Oxford University Press.
Department of Health. (1994) Policy Framework for Commissioning Cancer Services: A consultative document (the Calman report). London: The Stationery Office.
Ekberg, J.Y., Griffith, N., Foxall, M.J. (1986) Spouse burnout syndrome. Journal of Advanced Nursing 11: 161-165.
Field, P.A., Morse, J.M. (1987) Nursing Research: The application of qualitative approaches. London: Chapman and Hall.
Germino, B.B., Fife, B.L., Funk, G.F. (1995) Cancer and the partner relationship: what is its meaning? Seminars in Oncology Nursing 11: 1, 43-50.
Jasper, M.A. (1994) Issues in phenomenology for researchers in nursing. Journal of Advanced Nursing 19: 309-314.
Kalayjian, A.S. (1989) Coping with cancer: the spouse’s perspective. Archives of Psychiatric Nursing 3: 3, 166-172.
Kaye, J.M., Gracely, E.J. (1993) Psychological distress in cancer patients and their spouses. Journal of Cancer Education 8: 1, 47-52.
Kubler-Ross, E. (1969) On Death and Dying. London: Tavistock.
Lewis, F.M. (1986) The impact of cancer on the family: a critical analysis of the research literature. Patient Education and Counselling 8: 3, 269-289.
Lewis, F.M. (1990) Strengthening family supports: cancer and the family. Cancer 65: 752-759.
Morse, S.R., Fife, B. (1998) Coping with a partner’s cancer: adjustment at four stages of the illness trajectory. Oncology Nurses’ Forum 25: 4, 751-760.
Northouse, L.L., Peters-Golden, H. (1993) Cancer and the family: strategies to assist spouses. Seminars in Oncology Nursing 9: 2, 74-82.
Omery, A. (1983) Phenomenology: a method for nursing research. Advances in Nursing Science 5: 2, 49-63.
Ruevini, U. (1975) Network intervention with a family crisis. Family Process 14: 193-204.
Stetz, K.M. (1987) Caregiving demands during advanced cancer. Cancer Nursing 10: 5, 260-268.
NHS Executive. (1998) Improving Outcomes in Lung Cancer. London: The Stationery Office.
Woods, N.F., Lewis, F.M., Ellison, E.S. (1989) Living with cancer: family experiences. Cancer Nursing 12: 1, 28-33