Hostname: page-component-78c5997874-m6dg7 Total loading time: 0 Render date: 2024-11-01T21:13:17.532Z Has data issue: false hasContentIssue false
  • English
  • Français

Struggling to find meaning in life among spouses of people with ALS

Published online by Cambridge University Press:  03 July 2014

Anneli O. Ozanne ,
Ulla H. Graneheim  and
Susann Strang
Anneli O. Ozanne*
Affiliation:
Department of Neurology, Institute of Neuroscience and Physiology, Sahlgrenska University Hospital, Gothenburg, Sweden
Ulla H. Graneheim
Affiliation:
Department of Nursing, Umeå University, Umeå, Sweden
Susann Strang
Affiliation:
Institute of Health and Care Sciences, Sahlgrenska University Hospital, Gothenburg, Sweden
*
Address correspondence and reprint requests to: Anneli O Ozanne, Department of Neurology, Institute of Neuroscience and Physiology, Sahlgrenska University Hospital. SE-413-45 Gothenburg, Sweden. E-mail: anneli.ozanne@gu.se
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

The aim of this study was to illuminate experiences of finding meaning in life among spouses of people with amyotrophic lateral sclerosis.

Method:

Thirteen interviews were analyzed with qualitative content analysis.

Results:

The spouses were struggling for meaning at the end of a dark tunnel. They felt limited and isolated in their proximity to death. They lived imprisoned lives, felt lonely, considered life to be unfair and incomplete, and mourned the loss of their future. However, they found meaning despite the proximity of death through cherishing their own lives, fellowship, accepting the present, and believing in meaning after the partner's death.

Significance of results:

Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

Keywords

Amyotrophic lateral sclerosisMeaningQualitative content analysisSense of coherenceSpouse
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 4 , August 2015 , pp. 909 - 916
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

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(9), 1158–1169.Google Scholar
Antonovsky, A. (1987). Unraveling the mystery of health: How people manage stress and stay well. San Francisco: Jossey-Bass.Google Scholar
Aoun, S.M., Connors, S.L., Priddis, L., et al. (2012). Motor neurone disease family carers' experiences of caring, palliative care and bereavement: An exploratory qualitative study. Palliative Medicine, 26(6), 842–850.Google Scholar
Brandstatter, M., Kogler, M., Baumann, U., et al. (2014). Experience of meaning in life in bereaved informal caregivers of palliative care patients. Supportive Care in Cancer, 22(5), 1391–1399.Google Scholar
Breitbart, W., Gibson, C., Poppito, S.R., et al. (2004). Psychotherapeutic interventions at the end of life: A focus on meaning and spirituality. Canadian Journal of Psychiatry. Revue Canadienne de Psychiatrie, 49(6), 366–372.Google Scholar
Brooks, B.R. (1994). El Escorial World Federation of Neurology criteria for the diagnosis of amyotrophic lateral sclerosis. Subcommittee on motor neuron diseases/amyotrophic lateral sclerosis of the World Federation of Neurology Research Group on Neuromuscular Diseases and the El Escorial “Clinical limits of amyotrophic lateral sclerosis” workshop contributors. Journal of the Neurological Sciences, 124(Suppl.), 96–107.Google Scholar
Chio, A., Gauthier, A., Calvo, A., et al. (2005). Caregiver burden and patients' perception of being a burden in ALS. Neurology, 64(10), 1780–1782.Google Scholar
Chio, A., Logroscino, G., Hardiman, O., et al. (2009). Prognostic factors in ALS: A critical review. Amyotrophic Lateral Sclerosis, 10(5–6), 310–323.Google Scholar
Cohen, S.R., Mount, B.M., Tomas, J.J., et al. (1996). Existential well-being is an important determinant of quality of life: Evidence from the McGill Quality of Life Questionnaire. Cancer, 77(3), 576–586.3.0.CO;2-0>CrossRefGoogle ScholarPubMed
Ettema, E.J., Derksen, L.D. & van Leeuwen, E. (2010). Existential loneliness and end-of-life care: A systematic review. Theoretical Medicine and Bioethics, 31(2), 141–169.Google Scholar
Ferrell, B.R., Smith, S.L., Juarez, G., et al. (2003). Meaning of illness and spirituality in ovarian cancer survivors. Oncology Nursing Forum, 30(2), 249–257.Google Scholar
Graneheim, U.H. & Lundman, B. (2004). Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(2), 105–112.Google Scholar
Jenkinson, C., Fitzpatrick, R., Swash, M., et al. (2000). The ALS health profile study: Quality of life of amyotrophic lateral sclerosis patients and carers in Europe. Journal of Neurology, 247(11), 835–840.Google Scholar
la Cour, P. & Hvidt, N.C. (2010). Research on meaning-making and health in secular society: Secular, spiritual and religious existential orientations. Social Science & Medicine, 71(7), 1292–1299.Google Scholar
Mackinnon, C.J., Smith, N.G., Henry, M., et al. (2014). Meaning-based group counseling for bereavement: Bridging theory with emerging trends in intervention research. Death Studies, 38(3), 137–144.Google Scholar
Melin-Johansson, C., Henoch, I., Strang, S., et al. (2012). Living in the presence of death: An integrative literature review of relatives' important existential concerns when caring for a severely ill family member. The Open Nursing Journal, 6, 1–12.Google Scholar
Milberg, A. & Strang, P. (2003). Meaningfulness in palliative home care: An interview study of dying cancer patients' next of kin. Palliative & Supportive Care, 1(2), 171–180.Google Scholar
Mockford, C., Jenkinson, C. & Fitzpatrick, R. (2006). A review: Carers, MND and service provision. Amyotrophic Lateral Sclerosis, 7(3), 132–141.Google Scholar
Nolan, M.T., Kub, J., Hughes, M.T., et al. (2008). Family health care decision making and self-efficacy with patients with ALS at the end of life. Palliative & Supportive Care, 6(3), 273–280.CrossRefGoogle ScholarPubMed
Olsson, A.G., Markhede, I., Strang, S., et al. (2010 a). Differences in quality of life modalities give rise to needs of individual support in patients with ALS and their next of kin. Palliative & Supportive Care, 8(1), 75–82.Google Scholar
Olsson, A.G., Markhede, I., Strang, S., et al. (2010 b). Well-being in patients with amyotrophic lateral sclerosis and their next of kin over time. Acta Neurologica Scandinavica, 121(4), 244–250.Google Scholar
Olsson Ozanne, A.G., Strang, S. & Persson, L.I. (2011). Quality of life, anxiety and depression in ALS patients and their next of kin. Journal of Clinical Nursing, 20(1–2), 283–291.Google Scholar
Olsson Ozanne, A., Graneheim, U.H., Persson, L., et al. (2012). Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin. Journal of Clinical Nursing, 21(9–10), 1364–1373.Google Scholar
Oyebode, J.R., Smith, H.J. & Morrison, K. (2013). The personal experience of partners of individuals with motor neuron disease. Amyotrophic Lateral Sclerosis & Frontotemporal Degeneration, 14(1), 39–43.Google Scholar
Ozanne, A.O., Graneheim, U.H. & Strang, S. (2013). Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients. Journal of Clinical Nursing, 22(15–16), 2141–2149.CrossRefGoogle ScholarPubMed
Whitehead, B., O'Brien, M.R., Jack, B.A., et al. (2012). Experiences of dying, death and bereavement in motor neurone disease: A qualitative study. Palliative Medicine, 26(4), 368–378.Google Scholar
Wijesekera, L.C. & Leigh, P.N. (2009). Amyotrophic lateral sclerosis. Orphanet Journal of Rare Diseases, 4, 3.Google Scholar
Williams, M.T., Donnelly, J.P., Holmlund, T., et al. (2008). ALS: Family caregiver needs and quality of life. Amyotrophic Lateral Sclerosis, 9(5), 279–286.Google Scholar
Yalom, I.D. (1980). Existential psychotherapy. New York: Basic Books.Google Scholar