We used interpretive description to describe how everyday life close to death was experienced and dealt with in families with one member who had a life-threatening illness. We performed 28 individual, couple, and group interviews with five families. We found two patterns, namely, “being me in a family living close to death” and “being us in a family living close to death.” “Being me” meant that every individual in the family had to deal with the impending death, regardless of whether or not he or she was the person with the life-threatening illness. This was linked to ways of promoting the individual’s self-image, or “me-ness.” This pattern was present at the same time as the pattern of “being us,” or in other words, being a family, and dealing with impending death and a new “we-ness” as a group. “Striving for the optimal way of living close to death” was the core theme.
Åberg, A.C., Sidenvall, B., Hepworth, M., O’Reilly, & Lithell, H. ( 2004). Continuity of the self in later life: Perceptions of informal caregivers. Qualitative Health Research, 14, 792-815. doi:10.1177/1049732304265854
2.
Andershed, B. ( 2006). Relatives in end-of-life care. Part 1: A systematic review of the literature the five last years, January 1999-February 2004. Journal of Clinical Nursing, 15, 1158-1169. doi:10111/j.1365-2702.2006.01473.x
3.
Andrews, T., & Nathaniel, A.K. (2009). Awareness of dying revisited . Journal of Nursing Care Quality, 24, 189-193. doi:10.1097/NCQ.0b013e3181a34130
4.
Bacon, E. ( 2009). Positive experiences in caregivers: An exploratory case series. Behavioural and Cognitive Psychotherapy, 37, 95-114. doi:10.1017/S1352465808005055
5.
Badr, H., & Acitelli, L.K. (2008). Does talking about their relationship affect couples’ marital and psychological adjustment to lung cancer?Journal Cancer Survivor, 2, 53-64. doi:10.1007/s11764-008-0044-3
6.
Beauchamp, T.L., & Childress, J.F. (2008). Principles of Biomedical Ethics (6th ed.) New York: University of Oxford Press.
7.
Bee, P.E., Barnes, P., & Luker, K.A. ( 2009). A systematic review of informal caregivers’ needs in providing home-based end-of-life care to people with cancer. Journal of Clinical Nursing, 18, 1379-1393. doi:10.1111/j.1365-2702.2008.02405.x
8.
Berger, R., & Weiss, T. ( 2009). The posttraumatic growth model: An expansion to the family system. Traumatology, 15, 63-74. doi:10.1177/1534765608323499
9.
Bowlby, S., Gregory, S., & McKie, L. ( 1997). "Doing home": Patriarchy, caring, and space. Women’s Studies International Forum, 20, 343-350. doi:10.1016/S0277-5395(97)00018-6
10.
Briscoe, W.P., & Woodgate, R.L. (2010). Sustaining self: The lived experience of transition to long-term ventilation. Qualitative Health Research, 20, 57-67. doi:10.1177/1049732309356096
11.
Carlander, I., Sahlberg-Blom, E., Hellström, I., & Ternestedt, B.-M. (2010). The modified self: Family caregivers’ experiences of caring for a dying family member at home . Journal of Clinical Nursing. doi:10.1111/j.1365-2702.2010.03331.x
12.
Case, D. ( 1996). Contributions of journeys away to the definition of home: An empirical study of a dialectical process. Journal of Environmental Psychology, 16, 1-15. doi:10.1006/ jevp.1996.0001
13.
Charmaz, K. ( 1995). The body, identity, and self: Adapting to impairment . Sociological Quarterly, 36, 657-680. doi:10.1111/j.1533-8525.1995.tb00459.x
14.
Chick, N., & Meleis, A.I. ( 1986). Transitions: A nursing concern. In P. Chinn (Ed.), Nursing Research Methodology: Issues and Implementation. Rockville, MD: Aspen.
15.
Chochinov, H.M. ( 2006). Dying, dignity, and new horizons in palliative end-of-life care. CA: A Cancer Journal for Clinicians, 56, 84-103. Retrieved from http://caonline.amcancersoc.org/cgi/content/full/56/2/84
16.
Commission of Inquiry on a National Cancer Strategy. ( 2009). A national cancer strategy for the future-Summary. Report of the Commission of Inquiry on a National Cancer Strategy (Robert Williams, Trans., Publication No. SOU 2009:11). Stockholm, Sweden: Swedish Government Official Reports. Retrieved from http://www.regeringen.se/content/1/c6/12/09/76/01389b21.pdf
17.
Deaux, J.A., & Faux, S.A. ( 1991). Qualitative nursing research. A contemporary dialogue . In J. M. Morse (Ed.), Conducting qualitative studies with children and adolescents (pp. 203-223). Thousand Oaks, CA: Sage.
18.
Denzin, N. K., & Lincoln, Y. S. (Eds.) (2008). Collecting and interpreting qualitative materials (3rd ed.). Thousand Oaks, CA: Sage.
19.
Dobratz, M.C. ( 2002). The pattern of becoming-self in death and dying. Nursing Science Quarterly, 15, 137-142. doi: 10.1177/08943180222108796
20.
Dumont, I., Dumont, S., & Mongeau, S. ( 2008). End-of-life care and the grieving process: Family caregivers who have experienced the loss of a terminal-phase cancer patient. Qualitative Health Research, 18, 1049-1061. doi:10.1177/1049732308320110
21.
Dunning, S. ( 2006). As young child’s parent dies: Conceptualizing and constructing preventive interventions. Clinical Social Work Journal, 34, 499-514. doi:10.1007/s10615-006-0045-5
22.
Eggenberger, K.S., & Nelms, P.T. ( 2007). Being family: The family experience when an adult member is hospitalized with a critical illness. Journal of Clinical Nursing, 16, 1618-1628. doi:10.1111/j.1365-2702.2007.01659.x
23.
Elmberger, E., Bolund, C., & Lützen, K. (2002). Men with cancer. Changes in attempts to master the self-image as a man and as a parent. Cancer Nursing, 25, 477-485.
24.
Erlingsson, C., Carlson, S., & Saveman, B.-I. (2006). Perceptions of elder abuse: Voices of professionals and volunteers in Sweden-An exploratory study. Scandinavian Journal of Caring Science, 20, 151-159.
25.
Fürst, C.J. ( 2000). Perspectives on palliative care: Sweden. Support Care Cancer, 8, 441-443. doi:10.1007/s005200000196
Glenngård, A.H., Hjalte, F., Svensson, M.Anell, A., & Bankauskaite, V. (2005). Health systems in transition: Sweden. Copenhagen, Denmark: World Health Organization Regional Office for Europe on behalf of the European Observatory on Health Systems and Policies.
28.
Hudson, P. ( 2004). Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 58-65.
29.
James, I., Andershed, B., & Ternestedt, B.-M. (2009). The encounter between informal and professional care at the end of life. Qualitative Health Research, 19, 258-271. doi:10.1177/1049732308329309
30.
Jaspers, K. ( 1970). Philosophy. Chicago: University of Chicago Press.
31.
Kaiser, K. ( 2009). Protecting respondent confidentiality in qualitative research. Qualitative Health Research, 19, 1632-1641. doi:10.1177/1049732309350879
32.
Kenne Sarenmalm, E., Thorén-Jönsson, A.-L. , Gaston-Johnasson , F., & Öhlén, J. (2009 ). Making sense of living under the shadow of death: Adjusting to a recurrent breast cancer illness. Qualitative Health Research , 19, 1116-1130. doi:10.1177/1049732309341728
33.
Kristjanson, L.J., & Aoun, S. ( 2004). Palliative care for families: Remembering the hidden patients. Canadian Journal of Psychiatry, 49, 359-365.
34.
Lifton, R.J. ( 1993). The Protean self. Human resilience in an age of fragmentation . Chicago: University of Chicago Press.
35.
McPhedran, S. ( 2009). Animal abuse, family violence, and child wellbeing: A review. Journal of Family Violence, 24, 41-52. doi:10.1007/s10896-008-9206-3
36.
Meleis, A.I. ( 2007). Theoretical nursing. Development & progress (4th ed., pp. 453-480). Philadelphia: Lippincott Williams & Wilkins.
37.
Meleis, A.I., Sawyer, L.M., Im, E.O., Hilfinger Messias, D.K., & Schumacher, K. (2000). Experiencing transitions: An emerging middle-range theory. Advances in Nursing Science , 23, 12-28.
38.
Metha, A., Cohen, R., & Chan, L.S. ( 2009). Palliative care: A need for a family system approach . Palliative and Supportive Care, 7, 235-243. doi:10.1017S1478951509000303
39.
Morse, J.M. ( 1994). "Emerging from the data": The cognitive process of analysis in qualitative inquiry. In J. M. Morse (Ed.), Critical issues in qualitative research methods (pp. 23-43). Thousand Oaks, CA: Sage.
40.
Morse, J.M. ( 2006). The power of the anecdote. Qualitative Health Research, 16, 1019-1020. doi:10.1177/1049732306292121
Morse, J.M. ( 2009b). "Going beyond your data," and other dilemmas of interpretation . Qualitative Health Research, 19, 579. doi:10.1177/1049732308330603
43.
Öhlén, J., Andershed, B., Berg, C., Frid, I., Palm, C.-A., Ternestedt, B.-M., & Segesten, K. ( 2007). Relatives in end-of-life care. Part 2: A theory for enabling safety. Journal of Clinical Nursing, 16, 382-390. doi:10.1111/j.1365-2702.2006.01474.x
44.
Olive, P. ( 2007). Care for emergency department patients who have experienced domestic violence: A review of the evidence base. Journal of Clinical Nursing, 16, 1736-1748. doi:10.1111/j.1365-2702.2006.01746.x
45.
Persson, C., & Sundin, K. ( 2008). Being in the situation of a significant other to a person with inoperable lung cancer. Cancer Nursing, 31, 380-387. doi:10.1097/01. NCC.0000305763.89109.60
46.
Radway, S., Albanese, T., Clough, L., Sims, L., Mason, H., & Jahangiri, S. ( 2009). End-of-life decision making and emotional burden: Placing family meetings in context. American Journal of Hospice and Palliative Medicine, 26, 376-383. doi:10.1177/1049909109338515
47.
Raunkiær, M. ( 2007). At vœre døende hjemme-hverdagsliv og idealer (To be dying at home-Everyday life and ideals). Lund, Sweden: Lund University.
48.
Rosenbaum, E., Garlan, R.W., Hirschberger, N., Siegel, A.L., Butler, L.D., & Spiegel, D. ( 2006). The life tape project: Increasing family social support and symbolic immortality with a brief existential intervention for cancer patients and their families. Omega, 53, 321-339.
49.
Sand, L., Olsson, M., & Strang, P. ( 2009). Coping strategies in the presence of one’s own impending death from cancer. Journal of Pain and Symptom Management , 37, 13-22. doi:10.1016/j.jpainsymman.2008.013
50.
Sandelowski, M. ( 2000). Whatever happened to qualitative description?Research in Nursing & Health, 23, 334-340. doi:10.1002/1098-240X(200008)
51.
Sandelowski, M., & Barroso, J. ( 2003). Classifying the findings in qualitative studies. Qualitative Health Research, 13, 905-923. doi:10.1177/1049732303253488
52.
Saveman, B.-I., Hallberg, I.-L., & Norberg, A. ( 1996) Narratives by district nurses about elder abuse within families. Clinical Nursing Research-An International Journal , 5, 220-236. doi:10.1177/105477389600500208
53.
Schroevers, M.J., Helgeson, V.S., Sandeman, R., & Ranchor, A. ( 2010). Type of social support matters for prediction of posttraumatic growth among cancer survivors. Psycho-Oncology, 19, 46-53. doi:10.1002/pon.1501
54.
Schumacher, K.L., & Meleis, A.I. ( 1994). Transitions: A central concept in nursing. Journal of Nursing Scholarship, 26, 119-127. doi:10.1111/j.1547-5069.1994.tb00929.x
55.
Ternestedt, B.-M. ( 2009). A dignified death and identity-promoting care. In L. Nordenfelt (Ed.), Dignity in care for older people (pp. 146-167). Chichester, UK: Wiley-Blackwell.
56.
Ternestedt, B.-M., Andershed, B., Eriksson, M., & Johansson, I. ( 2002). A good death. Development of a nursing model of care . Journal of Hospice and Palliative Nursing, 4, 153-160.
57.
Thorne, S. ( 2008). Interpretive description. Walnut Creek, CA: Left Coast Press.
58.
Thorne, S. ( 2009). Is story enough?Qualitative Health Research , 19, 1183-1185. doi:10.1177/1049732309343951
59.
Thorne, S., Armstrong, E.-A., Harris, S., Hislop, G.T., Kim-Sing, C., Oglov, V., . . . Stajduhar, K.I. (2009). Patient real-time and 12-month retrospective perceptions of difficult communications in the cancer diagnostic period. Qualitative Health Research, 19, 1383-1394. doi:10.1177/1049732309348382
60.
Thorne, S., Reimer Kirkham, S., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorial qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20, 169-177. doi:10.1002/(SICI)1098240X(199704)
61.
Thorne, S., Reimer Kirkham, S., & O’Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3, 1-2.
62.
Weisman, A.D. ( 1972). On dying and denying: A psychiatric study of terminality . New York: Behavioral.
63.
Wells, J.N., Cagle, C.S., Bradley, P., & Barnes, D.M. ( 2008). Voices of Mexican American caregivers for family members with cancer: On becoming stronger. Journal of Transcultural Nursing, 19, 223-233. doi:10.1177/1043659608317096
64.
Wennman-Larsen, A., & Tishelman, C. ( 2002). Advanced home care for cancer patients at the end of life: A qualitative study of hopes and expectations of family caregivers. Scandinavian Journal of Caring Sciences, 16, 240-247. doi:10.1046/ j.1471-6712.2002.00091.x
65.
Williams, A.M. ( 2004). Shaping the practice of home care: Critical case studies of the significance of the meaning of home. International Journal of Palliative Nursing, 10 (7), 333-342.
66.
Wong, W.K., & Ussher, J. ( 2009). Bereaved informal carers making sense of their palliative care experiences at home. Health and Social Care in the Community , 17, 274-282. doi:10.1111/j.1365-2524.2008.00828.x
67.
World Health Organization. (2010). Definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/
68.
Zwahlen, D., Hagenbuch, N., Carley, M.I., Jenewein, J., & Buchi, S. ( 2009). Posttraumatic growth in cancer patients and partners-Effects of role, gender and the dyad on couples’ posttraumatic growth experience . Psycho-Oncology, 19, 12-20. doi:10.1002/pon.1486
