Hostname: page-component-586b7cd67f-vdxz6 Total loading time: 0 Render date: 2024-11-20T17:30:37.405Z Has data issue: false hasContentIssue false

Palliative care clients' and caregivers' notion of fear and their strategies for overcoming it

Published online by Cambridge University Press:  03 June 2014

Joy Penman*
Affiliation:
Centre for Regional Engagement, University of South Australia, Whyalla Norrie, Australia
Bronwyn Ellis
Affiliation:
Centre for Regional Engagement, University of South Australia, Whyalla Norrie, Australia
*
Address correspondence and reprint requests to: Joy Penman, University of South Australia, 111 Nicolson Avenue, Whyalla Norrie SA 5608, Australia. E-mail: [email protected]

Abstract

Objective:

This paper aims to clarify our understanding of fear and explore the strategies employed by people with life-limiting conditions and their caregivers in addressing the emotion of fear as they journey through the dying process. The role of fear is discussed: different kinds of fear, the tangible and intangible measures by which people manage their fear, and the ways of transcending fear.

Method:

The findings of a larger research project funded by the Australian Department of Health and Ageing are drawn upon. In-depth interviews were conducted with clients and caregivers relating to the psychosocial and emotional issues in palliative care. Secondary analysis was utilized to examine the perceptions of fear in this cohort.

Results:

While there were many other findings, the results highlighted in this paper relate to the notion of fear among interview participants. Interview data showed that people with life-limiting conditions and their caregivers had different types of fear and employed a variety of strategies to deal with fear. Four themes emerged embodying these strategies: calling on their own resilience and inner resources, maintaining human relationships, gaining the ability to “keep one step ahead” in the dying process, and engaging in spirituality and religion.

Significance of results:

The implications of the findings for healthcare professionals are highlighted. The recognition of emotions is embedded in palliative care; healthcare professionals should view the management of emotions as an integral part of professional practice. Addressing fear is essential because unresolved fear can impinge on one's ability to cope. Our paper brings together different perspectives on fear and how vulnerable individuals attempt to cope with it while at the same time providing a view of the challenges confronting healthcare professionals who are engaged with them and committed to optimizing health outcomes for palliative care clients and their caregivers.

Type
Original Articles
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

Baetz, M. & Toews, J. (2009). Clinical implications of research on religion, spirituality, and mental health. Canadian Journal of Psychiatry, 54(5), 292301.Google Scholar
Brammer, R. (2009). Spirituality, AIDS, and sexuality. Journal of GLBT Family Studies, 5(3), 203214.Google Scholar
Byrne, M. (2002). Spirituality in palliative care: What language do we need? International Journal of Palliative Nursing, 8(2), 6770, 72–74.Google Scholar
Campbell, J.D., Yoon, D.P. & Johnstone, B. (2010). Determining relationships between physical health and spiritual experience, religious practices, and congregational support in a heterogeneous medical sample. Journal of Religion and Health, 49(1), 317.Google Scholar
Cayetano-Penman, M.J. (2012). The phenomenon of spirituality: Palliative care clients' and caregivers' experiences in engaging with spiritual matters. Doctoral dissertation. Whyalla: Centre for Regional Engagement, University of South Australia.Google Scholar
Chaudhry, H.R. (2008). Psychiatric care in Asia: Spirituality and religious connotations. International Review of Psychiatry, 20(5), 477483.Google Scholar
Coeling, H.V., Biordi, D.L. & Theis, S.L. (2003). Negotiating dyadic identity between caregivers and care receivers. Journal of Nursing Scholarship, 35(1), 2125.Google Scholar
Cosgrove, J.F., Nesbitt, I.D. & Bartley, C. (2006). Palliative care on the intensive care unit. Current Anaesthesia and Critical Care, 17(5), 283288.Google Scholar
Denz-Penhey, H. & Campbell Murdoch, J. (2008). Personal resiliency: Serious diagnosis and prognosis with unexpected quality outcomes. Qualitative Health Research, 18(3), 391404.Google Scholar
Dunne, T. (2001). Spiritual care at the end of life. Hastings Center Report, 31(2), 2226.Google Scholar
Easton, K.L. & Andrews, J.C. (2000). The roles of the pastor in the interdisciplinary rehabilitation team. Rehabilitation Nursing, 25(1), 1012, 39.Google Scholar
Ellis, B. & Penman, J. (2013). Helping to empower regional multidisciplinary health teams to provide holistic palliative care. In Proceedings of the 12th national rural health conference, Adelaide SA, 7–10 April. Gregory, G. (ed.), pp. 1–15. Canberra: National Rural Health Alliance. Available at http://nrha.org.au/12nrhc/wp-content/uploads/2013/06/Ellis-Bronwyn_Penman-Joy_ppr.pdf.Google Scholar
Folkman, S. & Lazarus, R.S. (1988). Manual for the ways of coping questionnaire. Palo Alto: Consulting Psychologists Press.Google Scholar
Forcina Hill, J.M. (1993). Education in diverse cultural attitudes: Stereotyping or increasing cultural sensitivity. In Proceedings of the Australian Association for Hospice and Palliative Care National Conference, Melbourne. Abstract 40.Google Scholar
Griggs, C. (2010). Community nurses' perceptions of a good death: A qualitative exploratory study. International Journal of Palliative Nursing, 16(3), 140149.Google Scholar
Harding, R. & Higginson, I.J. (2003). What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliative Medicine, 17(1), 6374. Abstract available at http://www.ncbi.nlm.nih.gov/pubmed/12597468.Google Scholar
Hudson, R. & Richmond, J. (2003). Living, dying, caring (life and death in a nursing home), 2nd ed. Melbourne: Ausmed Publications.Google Scholar
Huether, S.E. & McCance, K.L. (2004). Understanding pathophysiology, 3rd ed. St. Louis: Mosby.Google Scholar
Ironson, G. & Hayward, H. (2008). Do positive psychosocial factors predict disease progression in HIV-1? A review of the evidence. Psychosomatic Medicine, 70(5), 546554.Google Scholar
Johnson-Laired, P.N. & Oatley, K. (1992). Basic emotions, rationality, and folk theory. Cognition & Emotion 6(3–4), 201223.Google Scholar
Katerndahl, D.A. (2008). Impact of spiritual symptoms and their interactions on health services and life satisfaction. Annals of Family Medicine, 6(5), 412420.Google Scholar
Kaut, K.P. (2002). Religion, spirituality, and existentialism near the end of life: Implications for assessment and application. American Behavioral Scientist, 46(2), 220234.Google Scholar
Kissane, D.W., Bloch, S. & Burns, W.I. (1994). Perceptions of family functioning and cancer. Psycho-Oncology 3, 259269.Google Scholar
Kociszewski, C. (2003). A phenomenological pilot study of the nurses' experience providing spiritual care. Journal of Holistic Nursing, 21(2), 131148.Google Scholar
Lazarus, R.S. (1993). Coping theory and research: Past, present, and future. Psychosomatic Medicine, 55, 234247.Google Scholar
Lugton, J. (2003). Communicating with dying people and their relatives. Melbourne: Ausmed Publications.Google Scholar
Michelson, K.N. & Steinhorn, D.M. (2007). Pediatric end-of-life issues and palliative care. Clinical Pediatric Emergency Medicine, 8(3), 212219.Google Scholar
Mitchell, G., Bowman, J., McEniery, J., et al. (1999). The blue book of palliative care: Evidence-based clinical guidelines for primary practitioners, 3rd ed. Old Ipswich: Commonwealth Department of Health and Aged Care.Google Scholar
Moos, R.H. (1993). Coping responses inventory: Professional manual. Odessa, FL: Psychological Assessment Resources.Google Scholar
Niven, N. & Robinson, J. (1994). The psychology of nursing care. London: Macmillan.Google Scholar
Oliver, M. & Penman, J. (2011). A state-of-the-art learning environment in palliative care is proving useful for rural health professionals. In Proceedings of the 11th national rural health conference, rural and remote Australia: The heart of a healthy nation, Perth, 13–16 March. Available at http://nrha.org.au/11nrhc/papers/11th%20NRHC%20Oliver_Mary_D1.pdf.Google Scholar
Oliver, M., Penman, J. & Ofner, C. (2005). The impact of partnership on capacity building in palliative care among rural communities: A South Australian experience. In Proceedings of the 8th national rural health conference, 10–13 March 2005, Alice Springs NT. National Rural Health Alliance. Available at https://www.yumpu.com/en/document/view/13702053/nrhc-2005-conference-national-rural-health-alliance.Google Scholar
Oliver, M., Penman, J. & Ofner, C. (2006). Partnering with rural communities to improve access and education in palliative care. Whyalla: Centre for Regional Engagement, University of South Australia. Available at http://202.74.67.49/docs/publications/1155_Access%20and%20Education%20in%20Palliative%20Care.pdf.Google Scholar
Oliver, M., Ofner, C., Penman, J., et al. (2007). Pastoral care, counseling and support: Reflective practice in palliative care. A resource manual for health professionals. Whyalla: Centre for Regional Engagement, University of South Australia.Google Scholar
Payne, S., Hawker, S., Kerr, C., et al. (2007). Healthcare workers' skills: Perceived competence and experiences of end-of-life care in community hospitals. Progress in Palliative Care, 15(3), 118125.Google Scholar
Plutchik, R. (1970). Emotions, evolution and adaptive processes. In Feelings and emotions. Arnold, M.B. (ed.), pp. 324. New York: Academic Press.Google Scholar
Plutchik, R. (1980). Emotions: A psychoevolutionary analysis. New York: Harper & Row.Google Scholar
Plutchik, R. (1985). On emotion: The chicken-and-egg problem revisited. Motivation and Emotion, 9, 197200.Google Scholar
Reeve, J. (2001). Understanding motivation and emotion, 3d ed, New York: John Wiley and Sons.Google Scholar
Richards, T. (2000). N5 reference guide. Victoria: QRS International.Google Scholar
Ross, L. (1994). Spiritual aspects of nursing. Journal of Advanced Nursing, 19, 439447.Google Scholar
Schultz, J.M., Tallman, B.A. & Altmaier, E.M. (2010). Pathways to posttraumatic growth: The contributions of forgiveness and importance of religion and spirituality. Psychology of Religion and Spirituality, 2(2), 104114.Google Scholar
Sherman, D.W. (2001). The perceptions and experiences of patients with AIDS: Implications regarding quality of life and palliative care. Journal of Hospice and Palliative Nursing, 3(1), 716.Google Scholar
Skilbeck, J. & Payne, S. (2003). Emotional support and the role of clinical nurse specialists in palliative care. Journal of Advanced Nursing, 43(5), 521–30.Google Scholar
Stedeford, A. (1981). Couples facing death, II: Unsatisfactory communication. BMJ, 283(6299), 10981101.Google Scholar
Steinhauser, K.E., Alexander, S.C., Byock, I.R., et al. (2008). Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial. Journal of Palliative Medicine, 11(9), 12341240.Google Scholar
Tang, W.-R. (2009). Hospice family caregivers' quality of life, Journal of Clinical Nursing, 18(18), 25632572.Google Scholar
Weiten, W. & Lloyd, M.A. (2008). Psychology applied to modern life: Adjustment in the 21st century, 9th ed. Belmont, CA: Wadsworth Cengage Learning.Google Scholar
World Health Organization (WHO) (2014). WHO definition of palliative care. Available at URL: http://www.who.int/cancer/palliative/definition/en/.Google Scholar