Hostname: page-component-cd9895bd7-lnqnp Total loading time: 0 Render date: 2024-12-25T18:01:56.589Z Has data issue: false hasContentIssue false
  • English
  • Français

An interpretative phenomenological analysis exploring the lived experience of individuals dying from terminal cancer in Ireland

Published online by Cambridge University Press:  08 May 2014

Kara McTiernan  and
Michael O'Connell
Kara McTiernan*
Affiliation:
School of Psychology, University College Dublin, Dublin, Ireland
Michael O'Connell
Affiliation:
School of Psychology, University College Dublin, Dublin, Ireland
*
Address correspondence and reprint requests to: Kara McTiernan, School of Psychology, Newman Building, University College Dublin, Belfield, Dublin 4, Ireland. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The experience of living with dying has attracted limited research. We utilized interpretive phenomenological analysis to explore the lived experience of individuals with terminal cancer receiving palliative care in Ireland.

Method:

Participants were purposely selected from public interviews that had been conducted between 2006 and 2011. The study included the accounts of eight participants (N = 8; six females and two males) with a diagnosis of terminal cancer. Participant ages ranged from 36 to 68 years.

Results:

Three master themes emerged from the analysis: the personal impact of diagnosis, the struggle in adjusting to change, and dying in context. The results revealed that participants were still living while simultaneously dying. Interestingly, participants did not ascribe new meaning to their lives. The terminal illness was understood within the framework of the life that had existed before diagnosis. They strove to maintain their normal routines and continued to undertake meaningful activities. Management of unfinished business and creation of a legacy were salient tasks. Social withdrawal was not present; rather, participants engaged in emotional labor to sustain valued roles. However, we found that within the public domain there is a paucity of education and discourse supporting individuals at the end of life. The hospice was noted as an important external resource. Each participant experienced a unique dying process that reflected their context.

Significance of Results:

Healthcare professionals need to recognize the subjectivity of the dying process. Dying individuals require support and options to maintain their personhood.

Keywords

Living/dyingTerminal cancerIrelandInterpretive phenomenological analysis
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 3 , June 2015 , pp. 641 - 651
Copyright
Copyright © Cambridge University Press 2014 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Armstrong-Coster, A. (2004). Living and dying with cancer. Cambridge: Cambridge University Press.Google Scholar
Arndt, J., Greenberg, J. & Cook, A. (2002). Mortality salience and the spreading activation of worldview-relevant constructs: Exploring the cognitive architecture of terror management. Journal of Experimental Psychology–General, 131(3), 307–323.Google Scholar
Atkinson, S. & Rubinelli, S. (2012). Narrative in cancer research and policy: Voice, knowledge and context. Critical Reviews in Oncology/Hematology, 84, 11–16.Google Scholar
Balducci, L. (2012). Death and dying: What the patient wants. Annals of Oncology, 23(3), 56–61.Google Scholar
Bandura, A. (1989). Regulation of cognitive process through perceived self-efficacy. Developmental Psychology, 25(5), 729–735.Google Scholar
Bell, K. & Ristovski-Slijepcevic, S. (2011). Metastatic cancer and mothering: Being a mother in the face of a contracted future. Medical Anthropology, 30(6), 629–649.Google Scholar
Benzein, E., Norberg, A. & Saveman, B.I. (2001). The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliative Medicine, 15(2), 117–126.Google Scholar
Bingley, A.F., McDermott, E., Thomas, C., et al. (2006). Making sense of dying: A review of narratives written since 1950 by people facing death from cancer and other diseases. Palliative Medicine, 20(3), 183–195.Google Scholar
Blauner, R. (2006). Death and the social structure. In Death, dying and bereavement: Major themes in health and social welfare. Doka, K. (ed.), pp. 19–35. London: Routledge.Google Scholar
Braun, V. & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.Google Scholar
Breitbart, W. (2002). Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer, 10(4), 272–280.Google Scholar
Breitbart, W. (2006). The goals of palliative care: Beyond symptom control. Palliative & Supportive Care, 4(1), 1–2.Google Scholar
Brennan, J. & Moynihan, C. (2008). Cancer in context: A practical guide to supportive care. New York: Oxford University Press.Google Scholar
Byock, I. (2002). The meaning and value of death. Journal of Palliative Medicine, 5(2), 279–288.Google Scholar
Broom, A. & Cavenagh, J. (2011). On the meanings and experiences of living and dying in a hospice. Health, 15(1), 96–111.Google Scholar
Broom, A. & Tovey, P. (2007). The dialectical tension between individuation and depersonalization in caner patients' mediation of complementary, alternative and biomedical cancer treatments. Sociology, 41(6), 1021–1039.Google Scholar
Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4(2), 167–182.Google Scholar
Byock, I.R. (1996). The nature of suffering and the nature of opportunity at the end of life. Clinics in Geriatric Medicine, 12(2), 237–252.Google Scholar
Camus, J.T.W. (2009). Metaphors of cancer in scientific popularization articles in the British press. Discourse Studies, 11(4), 465–495.Google Scholar
Carlick, A. & Biley, F.C. (2004). Thoughts on the therapeutic use of narrative in the promotion of coping in cancer care. European Journal of Cancer Care, 13(4), 308–317.Google Scholar
Carlson, L., Baker, T. & Halifax, J. (2011). Mindfulness for cancer and terminal Illness. In Mindfulness and acceptance in behavioral medicine: Current theory and practice. McCracken, L. (ed.), pp. 159–186. Oakland, CA: New Harbinger Publications.Google Scholar
Cassell, E.J. (2004). The nature of suffering: And the goals of medicine. New York: Oxford University Press.Google Scholar
Chan, T.H., Ho, R.T. & Chan, C.L. (2007). Developing an outcome measurement for meaning-making intervention with Chinese cancer patients. Psycho-Oncology, 16(9), 843–850.Google Scholar
Charmaz, K. (1994). Identity dilemmas of chronically ill men. The Sociological Quarterly, 35(2), 269–288.Google Scholar
Chochinov, H.M. & Cann, B.J. (2005). Interventions to enhance the spiritual aspects of dying. Journal of Palliative Medicine, 8(1), 103–115.Google Scholar
Clarke, P. & Black, S.E. (2005). Quality of life following stroke: Negotiating disability, identity and resources. Journal of Applied Gerontology, 24(4), 319–336.Google Scholar
Clarke, N., Sharp, L., O'Leary, E. & Richardson, N. (2013). A report on the excess burden of cancer among men in the Republic of Ireland. Dublin: Irish Cancer Society.Google Scholar
Clayton, J.M., Hancock, K., Parker, S., et al. (2008). Sustaining hope when communicating with terminally ill patients and their families: A systematic review. Psycho-Oncology, 17(7), 641–659.Google Scholar
Copp, G. (1998). A review of current theories of death and dying. Journal of Advanced Nursing, 28(2), 382–390.Google Scholar
Corr, C.A. (1991). A task-based approach to coping with dying. Omega: Journal of Death and Dying, 24(2), 81–94.Google Scholar
Corr, C.A., Doka, K.J. & Kastenbaum, R. (1999). Dying and its interpreters: A review of selected literature and some comments on the state of the field. Omega: Journal of Death and Dying, 39(4), 239–260.Google Scholar
Coyle, N. (2004). The existential slap a crisis of disclosure. International Journal of Palliative Nursing, 10(11), 520–520.Google Scholar
Coyle, N. (2006). The hard work of living in the face of death. Journal of Pain and Symptom Management, 32(3), 266–274.Google Scholar
Erikson, E. (1950). Childhood and society. New York: W.W. Norton & Company.Google Scholar
Exley, C. (1999). Testaments and memories negotiating after-death identities. Mortality, 4(3), 249–267.Google Scholar
Exley, C. & Letherby, G. (2001). Managing a disrupted life-course: Issues of identity and emotion work. Health, 5(1), 112–132.Google Scholar
Farber, S., Egnew, T. & Farber, A. (2004). What is a respectful death. In Living with dying: A handbook for end-of-life healthcare practitioners. Berzoff, J. & Silverman, P.R. (eds.), pp. 102–127. New York: Columbia University Press.Google Scholar
Fife, B.L. & Wright, E.R. (2000). The dimensionality of stigma: A comparison of its impact on the self of persons with HIV/AIDS and cancer. Journal of Health and Social Behavior, 41(1), 50–67.Google Scholar
Fujita, K., Trope, Y. & Liberman, N. (2010). Seeing the big picture: A construal level analysis of self-control. In Self-control in society, mind, and brain, Hassin, R.R. et al. (eds.), pp. 408–427. New York: Oxford University Press.Google Scholar
Giddens, A. (1991). Modernity and self-identity: Self and society in the late modern age. Cambridge: Polity Press.Google Scholar
Goffman, E. (1990). Stigma: Notes on the management of spoiled identity. New York: Simon and Schuster.Google Scholar
Greenberg, J. & Arndt, J. (2011). Terror management theory. In Handbook of theories of social psychology. Van Lange, P.A. et al. (eds.), pp. 398–415. London: Sage Publications.Google Scholar
Grumann, M.M. & Spiegel, D. (2003). Living in the face of death: Interviews with 12 terminally ill women on home hospice care. Palliative & Supportive Care, 1(1), 23–32.Google Scholar
Health Service Executive (2013). National service plan. Retrieved May 1, 2013, from http://www.hse.ie/eng/services/Publications/corporate/nationalopernationalplan2013.pdf.Google Scholar
Howarth, G. (1998). Just live for today: Living, caring, ageing and dying. Ageing and Society, 18(6), 673–689.Google Scholar
Hubbard, G. & Forbat, L. (2012). Cancer as biographical disruption: Constructions of living with cancer. Supportive Care in Cancer, 20(9), 2033–2040.Google Scholar
Irish Cancer Society (2013). Cancer statistics. Retrieved May 1, 2013, from http://www.cancer.ie/about-us/media-centre/cancer-statistics.Google Scholar
Kaplan, K.O. (2005). Footprints on the sands of time. Death Studies, 29(8), 759–767.Google Scholar
Kastenbaum, R. (1996). A world without death? First and second thoughts. Mortality, 1(1), 111–121.Google Scholar
Kastenbaum, R. (2000). The psychology of death. New York: Springer Publishing Company.Google Scholar
Kearney, M. (1996). Mortally wounded: Stories of soul pain, death and healing. Dublin: Marino Books.Google Scholar
Kissane, D.W., Clarke, D.M. & Street, A.F. (2001). Demoralization syndrome: A relevant psychiatric diagnosis for palliative care. Journal of Palliative Care, 17(1), 12–21.Google Scholar
Kreuter, M.W., Green, M.C., Cappella, J.N., et al. (2007). Narrative communication in cancer prevention and control: A framework to guide research and application. Annals of Behavioral Medicine, 33(3), 221–235.Google Scholar
Krikorian, A., Limonero, J.T. & Maté, J. (2012). Suffering and distress at the end of life. Psycho-Oncology, 21(8), 799–808.Google Scholar
Kübler-Ross, E. (1969). On death and dying. New York: McMillian.Google Scholar
Kuhl, D. (2002). What dying people want: Practical wisdom for the end of life. New York: Public Affairs.Google Scholar
Levine, A. & Karger, W. (2004). The trajectory of illness. In Living with dying: A handbook for end-of-life healthcare practitioners. Berzoff, J. & Silverman, P.R. (eds.), pp. 273–296. New York: Columbia University Press.Google Scholar
Marrone, R. (1999). Dying, mourning, and spirituality: A psychological perspective. Death Studies, 23(6), 495–519.Google Scholar
McCarthy, J., Donnelly, M., Dooley, D., et al. (2010 a). The complete ethical framework for end-of-life care. Dublin: The Irish Hospice Foundation.Google Scholar
McCarthy, J., Weafer, J. & Loughrey, M. (2010 b). Irish views on death and dying: A national survey. Journal of Medical Ethics, 36(8), 454–458.Google Scholar
McCreaddie, M., Payne, S. & Froggatt, K. (2010). Ensnared by positivity: A constructivist perspective on being positive in cancer care. European Journal of Oncology Nursing, 14(4), 283–290.Google Scholar
McGrath, P. (2003). Religiosity and the challenge of terminal illness. Death Studies, 27(10), 881–899.Google Scholar
McKechnie, R., MacLeod, R. & Keeling, S. (2007). Facing uncertainty: The lived experience of palliative care. Palliative & Supportive Care, 5(3), 255–264.Google Scholar
McKeown, K., Haase, T., Pratschke, J., et al. (2010). Dying in hospital in Ireland: An assessment of the quality of care in the last week of life. Dublin: The Irish Hospice Foundation.Google Scholar
McKiernan, A., Steggles, S. & Carr, A. (2013). Understanding how people cope with cancer: A review of theories. The Irish Psychologist, 39(8), 218–223.Google Scholar
McSherry, C.B. (2011). The inner life at the end of life. Journal of Hospice & Palliative Nursing, 13(2), 112–120.Google Scholar
Mikulincer, M., Florian, V. & Hirschberger, G. (2003). The existential function of close relationships: Introducing death into the science of love. Personality and Social Psychology Review, 7(1), 20–40.Google Scholar
Murray, E. (2013). Access to specialist palliative care services and place of death in Ireland. Dublin: The Irish Hospice Foundation.Google Scholar
Murray, M. (1999). The storied nature of health and illness. In Qualitative health psychology: Theories and methods. Murray, M. & Chamberlain, K. (eds.), pp. 47–63. London: Sage Publications.Google Scholar
Neimeyer, R.A., Currier, J.M., Coleman, R., et al. (2011). Confronting suffering and death at the end of life, the impact of religiosity, psychosocial factors, and life regret among hospice patients. Death Studies, 35(9), 777–800.Google Scholar
Nissim, R., Rennie, D., Felming, S., et al. (2012). Goals set in the land of the living/dying: A longitudinal study of patients living with advanced cancer. Death Studies, 36(4), 360–390.Google Scholar
O'Shea, E., Murphy, K., Larkin, P., et al. (2008). End-of-life care for older people in acute and long stay care settings in Ireland. Dublin. Hospice Friendly Hospitals Programme and National Council on Ageing and Older People.Google Scholar
Pattison, E.M. (1977). The experience of dying. Englewood Cliffs, NJ: Prentice Hall.Google Scholar
Pinquart, M., Frohlich, C., Sibereisen, R.K., et al. (2005). Death acceptance in cancer patients. Omega: Journal of Death and Dying, 52(3), 217–235.Google Scholar
Quinlan, C. (2009). Media discourses on autonomy in dying and death. Irish Communications Review, 11, 37–49.Google Scholar
Quinlan, C. & O'Neill, C. (2009). Practitioners' perspectives on patient autonomy at end of life. Dublin: The Irish Hospice Foundation.Google Scholar
Reeve, J., Lloyd-Williams, M., Payne, S., et al. (2010). Revisiting biographical disruption: Exploring individual embodied illness experience in people with terminal cancer. Health, 14(2), 178–195.Google Scholar
Silverman, P.R. (2004). Dying and bereavement in historical perspective. In Living with dying: A handbook for end-of-life healthcare practitioners. Berzoff, J. & Silverman, P.R. (eds.), pp. 128–149. New York: Columbia University Press.Google Scholar
Smith, J.A. & Osborn, M. (2003). Interpretative phenomenological analysis. In Qualitative psychology: A practical guide to research methods. Smith, J.A. (ed.), pp. 51–80. Thousand Oaks, CA: Sage Publications.Google Scholar
Smith, J.A., Jarman, M. & Osborn, M. (1999). Doing interpretative phenomenological analysis. In Qualitative health psychology: Theories and methods. Murray, M. & Chamberlain, K. (eds.), pp. 218–240. London: Sage Publications.Google Scholar
Smith, J.A., Flowers, P. & Larkin, M. (2009). Interpretative phenomenological analysis: Theory, method and research. London: Sage Publications.Google Scholar
Sudnow, D. (1967). Passing on: The social organization of dying. Englewood Cliffs, NJ: Prentice-Hall.Google Scholar
Talwar, V., Harris, P.L. & Schleifer, M. (2011). Children's understanding of death: From biological to religious conceptions. New York: Cambridge University Press.Google Scholar
Willig, C. (2001). Introducing qualitative research in psychology: Adventures in theory and method. New York: Open University Press.Google Scholar
Willig, C. (2009). Unlike a rock, a tree, a horse or an angel: Reflection on the struggle for meaning through writing during the process of cancer diagnosis. Journal of Health Psychology, 14(2), 181–189.Google Scholar
Willig, C. (2011). Cancer diagnosis as discursive capture: Phenomenological repercussions of being positioned within dominant constructions of cancer. Social Science & Medicine, 73(6), 897–903.Google Scholar
Willmott, H. (2000). Death, so what? Sociology, sequestration and emancipation. Sociological Review, 48(4), 649–665.Google Scholar
Wilson, S. (2007). When you have children, you're obliged to live: Motherhood, chronic illness and biographical disruption. Sociology of Health & Illness, 29(4), 610–626.Google Scholar
Wong, P.T. & Tomer, A. (2011). Beyond terror and denial: The positive psychology of death acceptance, Death Studies, 35(2), 99–106.Google Scholar
Wright, K. (2003). Relationships with death: The terminally ill talk about dying. Journal of Marital and Family Therapy, 29(4), 439–453.Google Scholar
Wrubel, J., Acree, M., Goodman, S., et al. (2009). End of living: Maintaining a lifeworld during terminal illness. Psychology & Health, 24(10), 1229–1243.Google Scholar
Yedidia, M.J. & MacGregor, B. (2001). Confronting the prospect of dying: Reports of terminally ill patients. Journal of Pain and Symptom Management, 22(4), 807–819.Google Scholar
Zimmermann, C. (2012). Acceptance of dying: A discourse analysis of palliative care literature. Social Science & Medicine, 45(1), 217–224.Google Scholar