Hostname: page-component-78c5997874-dh8gc Total loading time: 0 Render date: 2024-11-10T21:47:21.487Z Has data issue: false hasContentIssue false
  • English
  • Français

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

Published online by Cambridge University Press:  08 April 2015

Mary R. O'brien Open the ORCID record for Mary R. O'brien [Opens in a new window]  and
David Clark
Mary R. O'brien*
Affiliation:
Reader in Health Research, Evidence-Based Practice Research Centre (EPRC), Edge Hill University, Ormskirk, Lancashire, United Kingdom
David Clark
Affiliation:
School of Interdisciplinary Studies, University of Glasgow, Dumfries Campus, Scotland, United Kingdom
*
Address correspondence and reprint requests to: Mary R O'Brien, Evidence-Based Practice Research Centre (EPRC), Edge Hill University, Ormskirk, Lancashire, United KingdomL39 4QP. E-Mail: obrienm@edgehill.ac.uk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The notion of spirituality/religious belief is recognized internationally as a domain within end-of-life care and is important in patients' and carers' quality-of-life. When faced with incurable illness, patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with amyotrophic lateral sclerosis/motor neuron disease (ALS/MND) cope with their impending death.

Method:

Unsolicited narratives (internet and print-published) written by individuals diagnosed with the terminal condition of ALS/MND were analyzed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years (from 1968 to 2005) were included.

Results:

Our findings reveal that religious faith sustains and helps people to avoid despair, and personal spirituality helps them make sense of what is happening to them.

Significance of Results:

The use of personal narratives by people with ALS/MND has provided a vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be underestimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team.

Keywords

SpiritualityReligious faithAmyotrophic lateral sclerosis/motor neuron disease (ALS/MND)Written narrativesCoping
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 6 , December 2015 , pp. 1603 - 1614
Copyright
Copyright © Cambridge University Press 2015 

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

Bender, C. & McRoberts, O. (2012). Mapping a field: Why and how to study spirituality. Brooklyn: SSRC Working Papers. Available at http://blogs.ssrc.org/tif/wp-content/uploads/2010/05/Why-and-How-to-Study-Spirtuality.pdf. Last accessed November 4, 2014.Google Scholar
Bolmsjö, I. (2001). Existential issues in palliative care: Interviews of patients with amyotrophic lateral sclerosis. Journal of Palliative Medicine, 4(4), 499–505.Google Scholar
Braun, V & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 77–101.Google Scholar
Calvo, A., Moglia, C., Ilardi, A., et al. (2011). Religiousness is positively associated with quality of life of ALS caregivers. Amyotrophic Lateral Sclerosis, 12, 168–171.Google Scholar
Clark, D. & Centeno, C. (2014). Historical perspectives on end-of-life care in a global context: Europe. In Safe passage: A global and spiritual sourcebook for care at the end of life. Lazenby, M. et al. (eds.), pp. 36–47. New York: Oxford University Press.Google Scholar
Cobb, M. (2008). Spiritual care. In Psychosocial issues in palliative care., 2nd ed. Lloyd-Williams, M. (ed.), pp. 191–207. Oxford: Oxford University Press.Google Scholar
dal Bello-Hass, V., Andrews-Hinders, D., Bocian, J., et al. (2000). Spiritual well-being of the individual with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 1, 337–341.Google Scholar
Delgado-Guay, M. (2014). Spirituality and religiosity in supportive and palliative care. Current Opinion in Supportive and Palliative Care, 8(3), 308–313.CrossRefGoogle ScholarPubMed
Department of Health (2008). End-of-life care strategy: Promoting high-quality care for all adults at the end-of-life. London: The Stationery Office.Google Scholar
Dobratz, M.C. (2013). “All my saints are within me”: Expressions of end-of-life spirituality. Palliative & Supportive Care, 11, 191–198.Google Scholar
Eysenbach, G & Wyatt, J. (2002). Using the internet for surveys and health research. Journal of Medical Internet Research, 4(2), ee13. Available at http://www.jmir.org/2002/2/e13/edn. Last accessed March 25, 2013.Google Scholar
Fanos, J.H., Gelinas, D.F., Foster, R.S., et al. (2008). Hope in palliative care: From narcissism to self-transcendence in amyotrophic lateral sclerosis. Journal of Palliative Medicine, 11(3), 470–475.CrossRefGoogle ScholarPubMed
Fegg, M.J., Wasner, M., Neudert, C., et al. (2005). Personal values and individual quality of life in palliative care patients. Journal of Pain Symptom Management, 30(2), 154–159.Google Scholar
Fegg, M.J., Kögler, M., Brandstätter, M., et al. (2010). Meaning in life in patients with amyotrophic lateral sclerosis. Amyotrophic Lateral Sclerosis, 11, 469–474.Google Scholar
Fiifi-Amoah, C. (2011). The central importance of spirituality in palliative care. International Journal of Palliative Nursing, 17(7), 353–358.Google Scholar
Foley, G., O'Mahoney, P. & Hardiman, O. (2007). Perceptions of quality of life in people with ALS: Effects of coping and health care. Amyotrophic Lateral Sclerosis, 8, 164–169.Google Scholar
Garrett, C. (2002). Spirituality and healing in the sociology of chronic illness. Health Sociology Review, 11(1–2), 61–69.Google Scholar
Grant, E., Murray, S., Kendall, M., et al. (2004). Spiritual issues and needs: Perspectives from patients with advanced cancer and non-malignant disease. A qualitative study. Palliative & Supportive Care, 2, 371–378.Google Scholar
Hardey, M. (2002). “The story of my illness”: Personal accounts of illness on the internet. Health, 6(1), 31–46.Google Scholar
Hecht, M., Hillemacher, T., Gräsel, E., et al. (2002). Subjective experience and coping in ALS. Amyotrophic Lateral Sclerosis, 3, 225–232.Google Scholar
Holloway, I. & Freshwater, D. (2007). Narrative research in nursing. Oxford: Blackwell Google Scholar
Lambert, R. (2006). Spiritual care. In Palliative care in amyotrophic lateral sclerosis: From diagnosis to bereavement, ed. Oliver, D. et al. (eds.), pp. 143–168. Oxford: Oxford University Press.Google Scholar
Ming-Shium, T. (2006). Illness: An opportunity for spiritual growth. The Journal of Alternative and Complementary Medicine, 12(10), 1029–1033.Google Scholar
Mitsumoto, H., Bromberg, M., Johnston, W., et al. (2005). Promoting excellence in end-of-life care in ALS. Amyotrophic Lateral Sclerosis, 6, 145–154.Google Scholar
Murphy, P., Albert, S., Weber, C., et al. (2000). Impact of spirituality and religiousness on outcomes in patients with ALS. Neurology, 55, 1581–1584.Google Scholar
Nelson, N.D., Trail, M., Van, J.N., et al. (2003). Quality of life in patients with amyotrophic lateral sclerosis: Perceptions, coping resources, and illness characteristics. Journal of Palliative Medicine, 6(3), 417–424.Google Scholar
O'Brien, M.R. & Clark, D. (2012). Unsolicited written narratives as a methodological genre in terminal illness: Challenges and limitations. Qualitative Health Research, 22(2), 274–284.Google Scholar
Oliver, D. (2002). Palliative care for motor neurone disease. Practical Neurology, 2, 68–79.Google Scholar
Pagnini, F., Lunetta, C., Rossi, G., et al. (2011). Existential well-being and spirituality of individuals with amyotrophic lateral sclerosis is related to the psychological well-being of their caregivers. Amyotrophic Lateral Sclerosis, 12, 105–108.Google Scholar
Pitts, V. (2004). Illness and internet empowerment: Writing and reading breast cancer in cyberspace. Health, 8(1), 33–59.Google Scholar
Plahuta, J.M., Mcculloch, B.J., Kasarskis, E.J., et al. (2002). Amyotrophic lateral sclerosis and hopelessness: Psychosocial factors. Social Science & Medicine, 55(12), 2131–2140.Google Scholar
Puchalski, C. (2012). Spirituality as an essential domain of palliative care: Caring of the whole person. Progress in Palliative Care, 20(2), 63–65.Google Scholar
Rabkin, J., Wagner, G. & del Bene, M. (2000). Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosomatic Medicine, 62, 271–279.Google Scholar
Robinson, I. (1990). Personal narratives, social careers and medical courses: Analyzing life trajectories in autobiographies of people with multiple sclerosis. Social Science & Medicine, 30(11), 1173–1186.Google Scholar
Sullivan, C. (2010). Theory and method in qualitative research. In Doing qualitative research in psychology: A practical guide. Forrester, M. (ed.), pp. 15–38. London: Sage.Google Scholar
Vachon, M., Fillion, L. & Achille, M. (2009). A conceptual analysis of spirituality at the end of life. Journal of Palliative Medicine, 12, 53–59.CrossRefGoogle ScholarPubMed
Veldink, J., Wokke, J., van der Wal, G., et al. (2002). Euthanasia and physician-assisted suicide among patients with amyotrophic lateral sclerosis in the Netherlands. The New England Journal of Medicine, 346(21), 1638–1644.Google Scholar
Walsh, S.M., Bremer, B.A., Felgoise, S.H., et al. (2003). Religiousness is related to quality of life in patients with ALS. Neurology, 60(9), 1527–1529.Google Scholar
Wood-Allum, C. & Shaw, P. (2010). Motor neurone disease: A practical update on diagnosis and management. Clinical Medicine, 10(3), 252–258.Google ScholarPubMed
World Health Organization (1998). The World Health Organization Quality of Life Assessment (WHOQoL): Development and general psychometric properties. Social Science & Medicine, 46, 1569–1585.Google Scholar
Young, J.M. & McNicoll, P. (1998). Against all odds: Positive life experiences of people with advanced amyotrophic lateral sclerosis. Health & Social Work, 23(1), 35–43.Google Scholar