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Justification for information and knowledge: Perceptions of family members in palliative home care in Sweden

Published online by Cambridge University Press:  26 February 2004

MARIA J. FRIEDRICHSEN
MARIA J. FRIEDRICHSEN
Affiliation:
Faculty of Health Sciences, Department of Welfare and Care, Palliative Care, Linköping University, 601 74 Norrköping, Sweden
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Abstract

Objective: Several studies have concluded that family members in palliative home care want information about the patient's disease. The aim of this study was to describe family members' perceptions of their motivation for receiving information about the patient's disease.

Method: Semistructured tape-recorded interviews were performed with 20 family members of patients with incurable progressive cancer who were admitted to hospital-based home care in Sweden. Data were analyzed using a qualitative phenomenographic method.

Results: Family members justified their informational needs by emphasizing that they needed to understand and confirm what would happen when the disease progressed, to be mentally prepared for the future, to organize their daily life, to be a source of information to others, and that receiving information was a natural right.

Significance of results: This study has revealed some explanations as to why family members want information. In clinical practice, it is important that palliative care team members are aware of family members' level of knowledge and their need for information, as this mental preparation is important.

Keywords

Family membersPalliative home careInformationMotivation
Type
Research Article
Information
Palliative & Supportive Care , Volume 1 , Issue 3 , September 2003 , pp. 239 - 245
Copyright
© 2003 Cambridge University Press

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References

REFERENCES

Archbold, P.G., Stewart, B.J., Greenlick, & M.R., et al. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health, 13, 375–384.Google Scholar
Åstedt-Kurki, P., Paunonen, M., & Lehti, K. (1997). Family members' experiences of their role in a hospital: A pilot study. Journal of Advanced Nursing, 25, 908–914.Google Scholar
Chaitchick, S., Kreitler, S., Rapoport, & Y., et al. (1992). What do cancer patients' spouses know about the patients? Cancer Nursing, 15, 353–362.Google Scholar
Clumpus, L. & Hill, A. (1999). Exploring the views of carers of cancer patients in an inner city locality. International Journal of Palliative Nursing, 5, 116–123.Google Scholar
Conley, V. & Burman, M. (1997). Informational needs of caregivers of terminal patients in a rural state. Home Healthcare Nurse, 15, 808–817.Google Scholar
Dahlgren, L. & Fallsberg, M. (1991). Phenomenography as a qualitative approach in social pharmacy research. Journal of Social and Administrative Pharmacy, 8, 150–156.Google Scholar
Dunn, S., Butow, P., Tattersall, & M., et al. (1993). General information tapes inhibit recall of the cancer consultation. Journal of Clinical Oncology, 11, 2279–2285.Google Scholar
Friedrichsen, M., Strang, P., & Carlsson, M. (2000). Breaking bad news in the transition from curative to palliative cancer care: Patient's view of the doctor giving the information. Supportive Care in Cancer, 8, 472–478.Google Scholar
Friedrichsen, M., Strang, P., & Carlsson, M. (2002a). Cancer patients interpretation of verbal expressions when given information about ending active tumour treatment. Palliative Medicine, 16, 323–330.Google Scholar
Friedrichsen, M., Strang, P., & Carlsson, M. (2002b). Receiving bad news: Experiences of family members. Journal of Palliative Care, 17, 241–247.Google Scholar
Harding, R. & Higginson, I. (2001). Working with ambivalence: Informal caregivers of patients at the end of life. Supportive Care in Cancer, 9, 642–645.CrossRefGoogle Scholar
Hilton, B., Crawford, J., & Tarko, M. (2000). Men's perspectives on individual and family coping strategies with their wives' breast cancer and chemotherapy. Western Journal of Nursing Research, 22, 438–459.Google Scholar
Hinds, C. (1992). Suffering: A relatively unexplored phenomenon among family caregivers of non-institutionalised patients with cancer. Journal of Advanced Nursing, 17, 918–925.Google Scholar
Hinton, J. (1981). Sharing or withholding awareness of dying between husband and wife. Journal of Psychosomatic Research, 25, 337–343.Google Scholar
Houts, P.S., Rusenas, I., Simmonds, & M.A., et al. (1991). Information needs of families of cancer patients: A literature review and recommendations. Journal of Cancer Education, 6, 225–261.Google Scholar
Iconomou, G., Vagenakis, A., & Kalofonus, H. (2001). The informational needs, satisfaction with communication, and psychological status of primary caregivers of cancer patients receiving chemotherapy. Supportive Care in Cancer, 9, 591–596.CrossRefGoogle Scholar
Kilpatrick, M., Kristjanson, & L.J., et al. (1998). Information needs of husbands of women with breast cancer. Oncology Nursing Forum, 25, 1595–1601.Google Scholar
Marton, F. (1981). Phenomenography: Describing conceptions of the world around us. Instructional Science, 10, 177–200.CrossRefGoogle Scholar
McCorkle, R. & Pasacreta, J. (2001). Enhancing caregiver outcome in palliative care. Cancer Control, 8, 36–45.Google Scholar
Patton, M. (1990). Qualitative Evaluation and Research Methods. London: Sage Publications.
Rose, E.K. (1999). A qualitative analysis of the information needs of informal carers of terminally ill cancer patients. Journal of Clinical Nursing, 8, 81–88.Google Scholar
Stetz, K.M. (1987). Caregiving demands during advanced cancer: The spouses' needs. Cancer Nursing, 10, 260–268.Google Scholar
Tringali, C. (1986). The needs of family members of cancer patients. Oncology Nursing Forum, 13, 65–69.Google Scholar
Wakefield, M. & Ashby, M. (1993). Attitudes of surviving relatives to terminal care in south Australia. Journal of Pain and Symptom Management, 8, 529–538.Google Scholar
Walker, E. (2002). Partners' experiences of living with a patient with lung cancer. Professional Nurse, 17, 345–348.Google Scholar
Wilkes, L., White, K., & O'Riordan, L. (2000). Empowerment through information: Supporting rural families of oncology patients in palliative care. Australian Journal of Rural Health, 8, 41–46.Google Scholar
Zahlis, E. & Shands, M. (1991). Breast cancer: Demands of the illness on the patient's partner. Journal of Psychosocial Oncology, 9, 75–93.Google Scholar