Constructing family identity close to death


Daily life close to death involves physical, psychological, and social strain, exposing patients and their family members to major transitions affecting relational patterns and identity. For the individual family member, this often means sharing life with a changing person in a changing relationship, disrupting both individual identity and family identity. Our aim was to deepen the understanding of individual experiences that are important in constructing family identity close to death at home. We performed a secondary analysis of qualitative data collected through 40 interviews with persons with life-threatening illness and the family members who shared everyday life with them. The analysis resulted in interpretive descriptions which provided three patterns important for creating family identity, which we here call “we-ness” close to death. The patterns were: being an existential person, being an extension of the other, and being together in existential loneliness. Together, these three patterns seemed to play a part in the construction of family identity; we-ness, close to death. One important finding was the tension between the search for togetherness in “we-ness” while dealing with an existential loneliness, which seemed to capture an essential aspect of being a family of which one member is dying. 

Share and Cite:

Carlander, I. , Ternestedt, B. , Sandberg, J. and Hellström, I. (2013) Constructing family identity close to death. Open Journal of Nursing, 3, 379-388. doi: 10.4236/ojn.2013.35051.

Conflicts of Interest

The authors declare no conflicts of interest.


[1] Ek, K., Ternestedt, B.M., Andershed, B. and Sahlberg-Blom, E. (2011) Shifting life rhythms: Couples’ stories about living together when one spouse has advanced chronic obstructive pulmonary disease. Journal of Palliative Care, 27, 189-197.
[2] Ekwall, E., Ternestedt, B.M. and Sorbe, B. (2007) Recurrence of ovarian cancer-living in limbo. Cancer Nursing, 30, 270-277.
[3] Schumacher, K.L. and Meleis, A.I. (1994) Transitions: A central concept in nursing. Image: The Journal of Nursing Scholarship, 26, 119-127. doi:10.1111/j.1547-5069.1994.tb00929.x
[4] 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, 333-342.
[5] Gomes, B., Calanzani, N., Curiale, V., McCrone, P. and Higginson, I.J. (2013) Effectiveness and cost-effectiveness of home palliative care services for adults with advanced illness and their caregivers. Cochrane Database of Systematic Reviews, 6, Article ID: CD007760. doi:10.1002/14651858.CD007760.pub2
[6] Carlsson, M.E. (2012) Sleep disturbance in relatives of palliative patients cared for at home. Palliative & Supportive Care, 10, 165-170. doi:10.1017/S1478951511000836
[7] Stajduhar, K., Funk, L., Toye, C., Grande, G., Aoun, S. and Todd, C. (2010) Part 1: Home-based family caregiving at the end of life: A comprehensive review of published quantitative research (1998-2008). Palliative Medicine, 24, 573-593. doi:10.1177/0269216310371412
[8] Funk, L., Stajduhar, K., Toye, C., Aoun, S., Grande, G. and Todd, C. (2010) Part 2: Home-based family caregiving at the end of life: A comprehensive review of published qualitative research (1998-2008). Palliative Medicine, 24, 594-607. doi:10.1177/0269216310371411
[9] 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:10.1111/j.1365-2702.2006.01473.x
[10] Henriksson, A. and Andershed, B. (2007) A support group programme for relatives during the late palliative phase. International Journal of Palliative Nursing, 13, 175-183.
[11] Wells, J.N., Cagle, C.S., Bradley, P. and 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
[12] Hudson, P. (2004) Positive aspects and challenges associated with caring for a dying relative at home. International Journal of Palliative Nursing, 10, 58-65
[13] Anderson, B.A. and Kralik, D. (2008) Palliative care at home: Carers and medication management. Palliative & Supportive Care, 6, 349-356. doi:10.1017/S1478951508000552
[14] Carlander, I., Sahlberg-Blom, E., Hellstrom, I. and Ternestedt, B.M. (2011) The modified self: Family caregivers’ experiences of caring for a dying family member at home. Journal of Clinical Nursing, 20, 1097-1105. doi:10.1111/j.1365-2702.2010.03331.x
[15] Jaspers, K. (1970) Philosophy. The University of Chicago Press, Chicago.
[16] Chochinov, H.M. and Cann, B.J. (2005) Interventions to enhance the spiritual aspects of dying. Journal of Palliative Medicine, 8, S103-S115. doi:10.1089/jpm.2005.8.s-103
[17] Bryson, K.A. (2004) Spirituality, meaning, and transcendence. Palliative & Supportive Care, 2, 321-328. doi:10.1017/S1478951504040428
[18] Williams, A.L. (2006) Perspectives on spirituality at the end of life: A meta-summary. Palliative & Supportive Care, 4, 407-417. doi:10.1017/S1478951506060500
[19] Browall, M., Melin-Johansson, C., Strang, S., Danielson, E. and Henoch, I. (2010) Health care staff’s opinions about existential issues among patients with cancer. Palliative & Supportive Care, 8, 59-68. doi:10.1017/S147895150999071X
[20] Koffman, J., Morgan, M., Edmonds, P., Speck, P. and Higginson, I.J. (2012) “The greatest thing in the world is the family”: The meaning of social support among black Caribbean and white British patients living with advanced cancer. Psycho-Oncology, 21, 400-408. doi:10.1002/pon.1912
[21] Arnold, B.L. (2011) Mapping hospice patients’ perception and verbal communication of end-of-life needs: An exploratory mixed methods inquiry. BMC Palliative Care, 10, 1. doi:10.1186/1472-684X-10-1
[22] Carlander, I., Ternestedt, B.M., Sahlberg-Blom, E., Hellstrom, I. and Sandberg, J. (2010) Being me and being us in a family living close to death at home. Qualitative Health Research, 21, 683-695.
[23] Jo, S., Brazil, K., Lohfeld, L. and Willison, K. (2007) Caregiving at the end of life: Perspectives from spousal caregivers and care recipients. Palliative & Supportive Care, 5, 11-17. doi:10.1017/S1478951507070034
[24] Kristjanson, L.J. and Aoun, S. (2004) Palliative care for families: Remembering the hidden patients. Canadian Journal of Psychiatry, 49, 359-365.
[25] Carlander, I., Ternestedt, B.M., Sahlberg-Blom, E., Hellstrom, I. and Sandberg, J. (2011) Being me and being us in a family living close to death at home. Qualitative Health Research, 21, 683-695. doi:10.1177/1049732310396102
[26] Pickens, N.D., O’Reilly, K.R. and Sharp, K.C. (2010) Holding on to normalcy and overshadowed needs: Family caregiving at end of life. Canadian Journal of Occupational Therapy, 77, 234-240.
[27] Erikson, H. (1998) Life cycle completed. Extended version with new chapters on the ninth stage of development by Joan M. Erikson. W.W. Norton & Company, New York.
[28] Midtgaard, J., Rorth, M., Stelter, R. and Adamsen, L. (2006) The group matters: An explorative study of group cohesion and quality of life in cancer patients participating in physical exercise intervention during treatment. European Journal of Cancer Care, 15, 25-33.
[29] Stoltz, P., Lindholm, M., Uden, G. and Willman, A. (2006) The meaning of being supportive for family caregivers as narrated by registered nurses working in palliative homecare. Nursing Science Quarterly, 19, 163-173.
[30] Avis, M., Elkan, R., Patel, S., Walker, B.A., Ankti, N. and Bell, C. (2008) Ethnicity and participation in cancer self-help groups. Psychooncology, 17, 940-947. doi:10.1002/pon.1284
[31] Kurz, J.M. (2001) Experiences of well spouses after lung transplantation. Journal of Advanced Nursing, 34, 493-500.
[32] Milberg, A. and Strang, P. (2007) What to do when “there is nothing more to do”? A study within a salutogenic framework of family members’ experience of palliative home care staff. Psycho-Oncology, 16, 741-751. doi:10.1002/pon.1124
[33] Brannstrom, M., Ekman, I., Boman, K. and Strandberg, G. (2007) Narratives of a man with severe chronic heart failure and his wife in palliative advanced home care over a 4.5-year period. Contemporary Nurse, 27, 10-22.
[34] Palm, I. and Friedrichsen, M. (2008) The lived experience of closeness in partners of cancer patients in the home care setting. International Journal of Palliative Nursing, 14, 6-13.
[35] Sand, L. and Strang, P. (2006) Existential loneliness in a palliative home care setting. Journal of Palliative Medicine, 9, 1376-1387. doi:10.1089/jpm.2006.9.1376
[36] Milberg, A. and Strang, P. (2004) Exploring comprehensibility and manageability in palliative home care: An interview study of dying cancer patients’ informal carers. Psycho-Oncology, 13, 605-618. doi:10.1002/pon.774
[37] Dale, B., Saevareid, H.I., Kirkevold, M. and Soderhamn, O. (2010) Older home nursing patients’ perception of social provisions and received care. Scandinavian Journal of Caring Sciences, 24, 523-532.
[38] Nilsson, B., Lindstrom, U.A. and Naden, D. (2006) Is loneliness a psychological dysfunction? A literary study of the phenomenon of loneliness. Scandinavian Journal of Caring Sciences, 20, 93-101.
[39] Thorne, S. (1994) Secondary analysis in qualitative research: Issues and implications. Critical issues in qualitative research methods. Sage, Thousand Oaks.
[40] Thorne, S. (1998) Ethical and representational issues in qualitative secondary analysis. Qualitative Health Research, 8, 547-555. doi:10.1177/104973239800800408
[41] McAdams, D., Josselson, R. and Lieblich, A. (2006) Identity and story: Creating self in narrative. American Psychological Association, Washington DC. doi:10.1037/11414-000
[42] Thorne, S. (2008) Interpretive description. Left Coast Press, Walnut Creek.
[43] Thorne, S., Kirkham, S.R. and MacDonald-Emes, J. (1997) Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20, 169-177. doi:10.1002/(SICI)1098-240X(199704)20:2<169::AID-NUR9>3.0.CO;2-I
[44] Thorne, S., Reimer, K.S. and O’Flynn-Magee, K. (2004) The analytical challenge in interpretive description. International Journal of Qualitative Methods, 3, 1-11.
[45] Jenkins, R. (2008) Social identity. 3rd Edition, Routledge, New York.
[46] Yalom, I. (1980) Existential psychotherapy. Basic Books, Inc., New York.
[47] Waldrop, D.P., Kramer, B.J., Skretny, J.A., Milch, R.A. and Finn, W. (2005) Final transitions: Family caregiving at the end of life. Journal of Palliative Medicine, 8, pp. 623-638. doi:10.1089/jpm.2005.8.623
[48] Glaser, B.S. (1965) An awareness of dying. Aldine, New York.
[49] Andrews, T. and Nathaniel, A.K. (2009) Awareness of dying revisited. Journal of Nursing Care Quality, 24, 189-193.
[50] Grothe, T.T., Rydahl, H.S. and Wagner, L.I. (2012) Prioritising, downpalying and self-preservation: Processess significant to coping in advanced cancer patients. Open Journal of Nursing, 2, 48-57. doi:10.4236/ojn.2012.22009
[51] Meleis, A.I. (2010) Theoretical development of transistions. In: Meleis, A.I., Ed., Transition Theory Middlerange and Situation-Specific Theories in Nursing Research and Practice, Springer Publishing Company, New York, 13-51.
[52] Andershed, B. and Ternestedt, B.M. (2001) Development of a theoretical framework describing relatives’ involvement in palliative care. Journal of Advanced Nursing, 34, 554-562.
[53] Ward-Griffin, C. and McKeever, P. (2000) Relationships between nurses and family caregivers: Partners in care? Advances in Nursing Science, 22, 89-103.
[54] Sahlberg-Blom, E., Ternestedt, B.M. and Johansson, J.E. (2000) Patient participation in decision making at the end of life as seen by a close relative. Nursing Ethics, 7, 296-313.
[55] Milberg, A. and Strang, P. (2003) Meaningfulness in palliative home care: An interview study of dying cancer patients’ next of kin. Palliative & Supportive Care, 1, 171-180. doi:10.1017/S1478951503030311
[56] Dean, R.A. and Gregory, D.M. (2004) Humor and laughter in palliative care: An ethnographic investigation. Palliative & Supportive Care, 2, 139-148. doi:10.1017/S1478951504040192
[57] Astedt-Kurki, P. and Isola, A. (2001) Humour between nurse and patient, and among staff: Analysis of nurses’ diaries. Journal of Advanced Nursing, 35, 452-458.
[58] Dean, R.A. and Gregory, D.M. (2005) More than trivial: Strategies for using humor in palliative care. Cancer Nursing, 28, 292-300.
[59] Hollman, G., Ek, A.C., Olsson, A.G. and Bertero, C. (2004) Meaning of quality of life among patients with familial hypercholesterolemia. Journal of Cardiovascular Nursing, 19, 243-250. doi:10.1097/00005082-200407000-00004
[60] Kirk, P., Kirk, I. and Kristjanson, L.J. (2004) What do patients receiving palliative care for cancer and their families want to be told? A Canadian and Australian qualitative study. British Medical Journal, 328, 1343.
[61] Benzar, E., Hansen, L., Kneitel, A.W. and Fromme, E.K. (2011) Discharge planning for palliative care patients: A qualitative analysis. Journal of Palliative Medicine, 14, 65-69. doi:10.1089/jpm.2010.0335
[62] Sahlberg-Blom, E., Ternestedt, B.M. and Johansson, J.E. (2001) Is good “quality of life” possible at the end of life? An explorative study of the experiences of a group of cancer patients in two different care cultures. Journal of Clinical Nursing, 10, 550-562. doi:10.1046/j.1365-2702.2001.00511.x
[63] Thorne, S. (1994) Secondary analysis in qualitative research: Issues and implications. In: Morse, J., Ed., Critical Issues in Qualitative Research Methods, Sage, Thousand Oaks, pp. 263-279.

Copyright © 2024 by authors and Scientific Research Publishing Inc.

Creative Commons License

This work and the related PDF file are licensed under a Creative Commons Attribution 4.0 International License.