Promoting Enhanced Patient and Family Caregiver Congruence on Lung Cancer Symptom Experiences

Michelle M. Lobchuk

Lesley F. Degner

Dan Chateau

Donna Hewitt

ONF 2006, 33(2), 273-282. DOI: 10.1188/06.ONF.273-282

Purpose/Objectives: To test the effects of different perspective-taking instructional sets, gender, caregivers' personal histories with cancer, and caregiving relationship factors on family caregiver and patient perceptual agreement of symptom experiences of patients with lung cancer.

Design: Counterbalanced.

Setting: Thoracic oncology outpatient clinical setting in Canada.

Sample: 98 dyads consisting of patients with lung cancer and their family caregivers.

Methods: Data were collected on a one-time basis by employing an abbreviated version of the Memorial Symptom Assessment Scale targeting lack of energy and worrying. Caregivers were randomized to one of six counterbalanced conditions of perspective-taking instructions.

Main Research Variables: Caregiver discrepancy scores, instructional sets (i.e., neutral, self-report, and imagine-self and imagine-patient perspective-taking), order effects, gender, caregivers' personal history with cancer, and caregiving relationship factors.

Findings: No order effects were found for the instructional sets. Instructions to imagine the patient's perspective over imagining how the caregiver would feel if he or she had cancer were most effective in enhancing the caregiver's ability to estimate the patient's lack of energy and worrying. Gender had no significant effects. The amount of patient-caregiver communication had a positive impact on the accuracy of caregivers' perspectives.

Conclusions: The patient-oriented instructions had a limited impact on enhancing patient-caregiver congruence on patient symptoms. This likely is related to the study's convenience sample of caregivers who appear to naturally engage in empathic processes of patient-oriented perspective-taking when they assessed and reported on patient symptom conditions.

Implications for Nursing: Further exploratory work should identify interpersonal conditions that negatively hamper the effects of caregiver perspective-taking on their reasonable understanding of patient symptoms.

Jump to a section

    References

    Aaronson, N.K. (1991). Methodologic issues in assessing the quality of life of cancer patients. Cancer, 67(3, Suppl.), 844-850.

    Andershed, B., & Ternestedt, B.M. (1999). Involvement of relatives in care of the dying in different care cultures: Development of theoretical understanding. Nursing Science Quarterly, 12(1), 45-51.

    Bakas, T., Lewis, R.R., & Parsons, J.E. (2001). Caregiving tasks among family caregivers of patients with lung cancer. Oncology Nursing Forum, 28, 847-854.

    Bar-Tal, Y., Barnoy, S., & Zisser, B. (2005). Whose informal needs are considered? A comparison between cancer patients and their spouses' perceptions of their own and their partners' knowledge and informational needs. Social Science and Medicine, 60, 1459-1465.

    Batson, C.D., Early, S., & Salvarani, G. (1997). Perspective-taking: Imagining how another feels versus imagining how you would feel. Personality and Social Psychology Bulletin, 23, 751-758.

    Borthwick, D., Knowles, G., McNamara, S., O'Dea, R.O., & Stroner, P. (2003). Assessing fatigue and self-care strategies in patients receiving radiotherapy for non-small cell lung cancer. European Journal of Oncology Nursing, 7, 231-241.

    Breetvelt, I.S., & Van Dam, F.S. (1991). Underreporting by cancer patients: The case of response-shift. Social Science and Medicine, 32, 981-987.

    Canadian Cancer Society & National Cancer Institute of Canada. (2005). Canadian cancer statistics 2005. Toronto, Canada: National Cancer Institute of Canada.

    Carlson, L.E., Ottenbreit, N., St Pierre, M., & Bultz, B.D. (2001). Partner understanding of the breast and prostate cancer experience. Cancer Nursing, 24, 231-239.

    Clotfelter, C.E. (1999). The effect of an educational intervention on decreasing pain intensity in elderly people with cancer. Oncology Nursing Forum, 26, 27-33.

    Cooley, M.E. (2000). Symptoms in adults with lung cancer: A systematic research review. Journal of Pain and Symptom Management, 19, 137-153.

    Cooley, M.E., Short, T.H., & Moriarty, H.J. (2002). Patterns of symptom distress in adults receiving treatment for lung cancer. Journal of Palliative Care, 18, 150-159.

    Cooper, E.T. (1984). A pilot study on the effects of the diagnosis of lung cancer on family relationships. Cancer Nursing, 7, 301-308.

    Corner, J., Plant, H., & Warner, L. (1995). Developing a nursing approach to managing dyspnoea in lung cancer. International Journal of Palliative Nursing, 1(1), 5-11.

    Degner, L.F., & Sloan, J.A. (1995). Symptom distress in newly diagnosed ambulatory cancer patients and as a predictor of survival in lung cancer. Journal of Pain and Symptom Management, 10, 423-431.

    Deschler, D.G., Walsh, K., & Hayden, R.E. (2004). Follow-up quality of life assessment in patients after head and neck surgery as evaluated by lay caregivers. Head and Neck Nursing, 22(1), 26-32.

    Ekfors, H., & Petersson, K. (2004). A qualitative study of the experiences during radiotherapy of Swedish patients suffering from lung cancer. Oncology Nursing Forum, 31, 329-334.

    Folstein, M.F., Folstein, S.E., & McHugh, P.R. (1975). "Mini-mental state": A practical method for grading the cognitive state of patients for the clinician. Journal of Psychiatric Research, 12, 189-198.

    Gilbert, D.T., Pinel, E.C., Wilson, T.D., Blumberg, S.J., & Wheatley, T.P. (1998). Immune neglect: A source of durability bias in affective forecasting. Journal of Personality and Social Psychology, 75, 617-638.

    Glover, J., Dibble, S.L., Dodd, M.J., & Miaskowski, C. (1995). Mood states of oncology outpatients: Does pain make a difference? Journal of Pain and Symptom Management, 10, 120-128.

    Graham, T., & Ickes, W. (1997). When women's intuition isn't greater than men's. In W. Ickes (Ed.), Empathic accuracy (pp. 117-143). New York: Guilford Press.

    Grassi, L., Indelli, M., Maltoni, M., Falcini, F., Fabbri, L., & Indelli, R. (1996). Quality of life of homebound patients with advanced cancer: Assessments by patients, family members, and oncologists. Journal of Psychsocial Oncology, 14(3), 31-45.

    Hays, R.D., Vickrey, B.G., Hermann, B.P., Perrine, K., Cramer, J., Meador, K., et al. (1995). Agreement between self-reports and proxy reports of quality of life in epilepsy patients. Quality of Life Research, 4, 159-168.

    Hodges, L.J., Humphris, G.M., & Macfarlane, G. (2005). A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Social Science and Medicine, 60, 1-12.

    Hudson, P., Aranda, S., & McMurray, N. (2002). Intervention development for enhanced lay palliative caregiver support-The use of focus groups. European Journal of Cancer Care, 11, 262-270.

    Keefe, F.J., Ahles, T.A., Porter, L.S., Sutton, L.M., McBride, C.M., Pope, M.S., et al. (2003). The self-efficacy of family caregivers for helping cancer patients manage pain at end-of-life. Pain, 103, 157-162.

    Krishnasamy, M., & Wilkie, E. (1999). Lung cancer: Patients', families' and professionals' perceptions of health care need. A national needs assessment survey. London: Macmillan Practice Development Unit.

    Kristjanson, L., Nikoletti, S., Porock, D., Smith, M., Lobchuk, M., & Pedler, P. (1998). Congruence between patients' and family caregivers' perceptions of symptom distress in patients with terminal cancer. Journal of Palliative Care, 14, 24-32.

    Kurtz, M.E., Kurtz, J.C., Stommel, M., Given, C.W., & Given, B.A. (2000). Symptomatology and loss of physical functioning among geriatric patients with lung cancer. Journal of Pain and Symptom Management, 19, 249-256.

    Larsson, B.W., Larsson, G., & Carlson, S.R. (2004). Advanced home care: Patients' opinions on quality compared with those of family members. Journal of Clinical Nursing, 13, 226-233.

    Lobchuk, M.M. (2001). Family caregiver "perspective-taking": A determinant of "empathic" accuracy on symptom experience in advanced stage cancer patients. Unpublished doctoral dissertation, University of Manitoba, Canada.

    Lobchuk, M.M., Kristjanson, L., Degner, L., Blood, P., & Sloan, J.A. (1997). Perceptions of symptom distress in lung cancer patients: I. Congruence between patients and primary family caregivers. Journal of Pain and Symptom Management, 14, 136-146.

    Lobchuk, M.M., & Vorauer, J.D. (2003). Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Social Science and Medicine, 57, 2379-2384.

    McPherson, C.J., & Addington-Hall, J.M. (2003). Judging the quality of care at the end of life: Can proxies provide reliable information? Social Science and Medicine, 56, 95-109.

    Miaskowski, C., Kragness, L., Dibble, S., & Wallhagen, M. (1997). Differences in mood states, health status, and caregiver strain between family caregivers of oncology outpatients with and without cancer-related pain. Journal of Pain and Symptom Management, 13, 138-147.

    Murray, S.A., Boyd, K., Kendall, M., Worth, A., Benton, T.F., & Clausen, H. (2002). Dying of lung cancer or cardiac failure: Prospective qualitative interview study of patients and their carers in the community. BMJ, 325, 929.

    Neyer, F.J., Banse, R., & Asendorpf, J.B. (1999). The role of projection and empathic accuracy in dyadic perception between older twins. Journal of Social and Personal Relationships, 16, 419-442.

    Oh, E.G. (2004) Symptom experience in Korean adults with lung cancer. Journal of Pain and Symptom Management, 28, 133-139.

    Pistrang, N., & Barker, C. (1995). The partner relationship in psychological response to breast cancer. Social Science and Medicine, 40, 789-797.

    Portenoy, R.K., Thaler, H.T., Kornblith, A.B., Lepore, J.M., Friedlander-Klar, H., Kiyasu, E., et al. (1994). The Memorial Symptom Assessment Scale: An instrument for the evaluation of symptom prevalence, characteristics, and distress. European Journal of Cancer, 30A, 1326-1336.

    Redinbaugh, E.M., Baum, A., DeMoss, C., Fello, M., & Arnold, R. (2002). Factors associated with the accuracy of family caregiver estimates of patient pain. Journal of Pain and Symptom Management, 23, 31-38.

    Saxena, A., Mendoza, T., & Cleeland, C.S. (1999). The assessment of cancer pain in north India: The validation of the Hindi Brief Pain Inventory: BPIH. Journal of Pain and Symptom Management, 17, 27-41.

    Sneeuw, K.C., Aaronson, N.K., de Haan, R.N., & Limburg, M. (1997). Assessing quality of life after stroke: The value and limitations of proxy ratings. Stroke, 28, 1541-1549.

    Sneeuw, K.C., Aaronson, N.K., Osoba, D., Muller, M.J., Hsu, M.A., Yung, W.K., et al. (1997). The use of significant others as proxy raters of the quality of life of patients with brain cancer. Medical Care, 35, 490-506.

    Stotland, E. (1969). Exploratory investigations of empathy. In L. Berkowitz (Ed.), Advances in experimental social psychology (pp. 271-314). New York: Academic Press.

    Thorn, B.E., Keefe, F.J., & Anderson, T. (2004). The communal coping model and interpersonal context: Problems or process? Pain, 110, 505-507.

    Thulesius, H., Hakansson, A., & Petersson, K. (2003). Balancing: A basic process in end-of-life cancer care. Qualitative Health Research, 13, 1353-1377.

    Tishelman, C., Degner, L.F., & Mueller, B. (2000). Measuring symptom distress in patients with lung cancer. A pilot study of experienced intensity and importance of symptoms. Cancer Nursing, 23, 82-90.

    Yates, P. (1999) Family coping: Issues and challenges for cancer nursing. Cancer Nursing, 22, 63-71.

    Zhang, A.Y., & Siminoff, L.A. (2003). Silence and cancer: Why do families and patients fail to communicate? Health Communication, 15, 415-429.