Hostname: page-component-78c5997874-m6dg7 Total loading time: 0 Render date: 2024-11-11T08:23:26.221Z Has data issue: false hasContentIssue false
  • English
  • Français

Making sense of health and illness in palliative care: Volunteers' perspectives

Published online by Cambridge University Press:  27 September 2010

Andrée Sévigny ,
S. Robin Cohen ,
Serge Dumont  and
Annie Frappier
Andrée Sévigny*
Affiliation:
Département de Médecine Familiale et de Médecine d'Urgence, Université Laval, Québec, Canada Departments of Oncology and Medicine, McGill University, Montréal, Canada École de Service Social, Université Laval, Québec, Canada Centre d'Excellence sur le Vieillissement de Québec, Québec, Canada
S. Robin Cohen
Affiliation:
Departments of Oncology and Medicine, McGill University, Montréal, Canada
Serge Dumont
Affiliation:
École de Service Social, Université Laval, Québec, Canada
Annie Frappier
Affiliation:
Centre d'Excellence sur le Vieillissement de Québec, Québec, Canada
*
Address correspondence and reprint requests to: Andrée Sévigny, Hôpital St-Sacrement, 1050 Chemin Ste-Foy, Québec (Québec), G1S 4L8, Canada. Email: andree.sevigny.cha@ssss.gouv.qc.ca
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

To encourage communication and contribute to the palliative care movement's need for interdisciplinary care, this article offers to explore the stance of volunteers on two fundamental concepts, “health” and “illness,” as well as their related understanding of “palliative care.” Volunteers' understandings are then compared with the concepts put forth by the Canadian Hospice Palliative Care Association (CHPCA) in its “Model to Guide Hospice Palliative Care.”

Method:

Focus groups with volunteers, and individual interviews with coordinators from five selected palliative care community action organizations from across Canada, are used. A total of 65 participants from three Canadian provinces were interviewed.

Results:

Participants view illness as a subjective, multidimensional, and transformative experience that requires multiple adjustments. It is an impediment to personal equilibrium and a challenge for the terminally ill and their close ones. Health, on the other hand, is a complex phenomenon that consists of physical, psychological, social, and spiritual well-being. For participants, health is most often embodied by a person's capacity to adjust to their challenging circumstances. Both volunteers and coordinators see palliative care as an alternative approach to care that centers on helping patients and their families through their ordeal by offering comfort and respite, and helping patients enjoy their life for as long as possible.

Significance of Results:

Participants describe illness as a destabilizing loss and palliative care as a means to compensate for the numerous consequences this loss brings; their actions reflect these principles and are compatible with the CHPCA model.

Keywords

HealthIllnessPalliative CareVolunteeringMeaning
Type
Original Articles
Information
Palliative & Supportive Care , Volume 8 , Issue 3 , September 2010 , pp. 325 - 334
Copyright
Copyright © Cambridge University Press 2010

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

Ando, M., Morita, T., Lee, V., et al. (2008). A pilot study of transformation, attributed meanings to the illness, and spiritual well-being for terminally ill cancer patients. Palliative and Supportive Care, 6, 335–340.CrossRefGoogle Scholar
Antonovsky, A. (1996). The salutogenic model as a theory to guide health promotion. Health Promotion International, 11, 11–18.Google Scholar
Bardin, L. (1986). L'Analyse de Contenu (Content Analysis). Paris: Presses Universitaires de France.Google Scholar
Billings, J.A. (1998). What is Palliative Care? Journal of Palliative Medicine, 1, 73.CrossRefGoogle ScholarPubMed
Bingley, A.F., Thomas, C., Brown, J. et al. (2008). Developing narrative research in supportive and palliative care: The focus on illness narratives. Palliative Medicine, 22, 653–658.Google Scholar
Bircher, J. (2005). Towards a dynamic definition of health and disease. Medicine, Health Care and Philosophy, 8, 335–441.CrossRefGoogle ScholarPubMed
Boström, M. (2004). Cognitive practices and collectives identities within heterogeneous social movement: The Swedish environmental movement. Social Movement Studies, 3, 73–88.Google Scholar
Bowers, B.J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents. Advances in Nursing Science, 9, 20–31.CrossRefGoogle ScholarPubMed
Bowers, B.J. (1988). Family perceptions of care in a nursing home. Gerontologist, 28, 361–368.CrossRefGoogle ScholarPubMed
Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care. Ottawa: Canadian Hospice Palliative Care Association.Google Scholar
Carstairs, S. (2005). Still Not There. Quality End-of-Life Care: A Progress Report. http://sen.parl.gc.ca/scarstairs/PalliativeCare/Still Not There June 2005.pdf.Google Scholar
Cassarett, D.J., Hirsman, K.B. & Henry, M.R. (2001). Does hospice have a role in nursing home care at the end of life? Journal of American Geriatrics Society, 49, 1493–1498.Google Scholar
Castra, M. (2003). Bien Mourir: Sociologie des Soins Palliatifs (Dying Well: Sociology of Palliative Care). Paris: Presses Universitaires de France.Google Scholar
Cohen, S.R. & Leis, A. (2002). What determines the quality of life of terminally ill cancer patients from their own perspective? Journal of Palliative Care, 18, 48–58.Google Scholar
Cohen, S.R. & Mount, B.M. (2000). Living with cancer: “Good days” and “bad days” — what produces them? Can the McGill Quality of Life Questionnaire distinguish between them? Cancer, 89, 1854–1865.Google Scholar
Collie, K. & Long, B.C. (2005). Considering “meaning” in the context of breast cancer. Journal of Health Psychology, 10, 843–853.CrossRefGoogle ScholarPubMed
Davies, P.G. (2007). Between health and illness. Perspectives in Biology and Medicine, 50, 444–452.CrossRefGoogle ScholarPubMed
Deslauriers, J.-P. (1991). Recherche Qualitative: Guide Pratique (Qualitive Research: A Practical Guide). Montréal: McGraw-Hill.Google Scholar
Dolan, M.B. (1994). The invisible volunteer. The American Journal of Nursing, 94, 59–60.CrossRefGoogle ScholarPubMed
Doyle, D. & Woodruff, R. (2008). The IAHPC Manual of Palliative Care. http://www.hospicecare.com/manual/IAHPCmanual.htm.Google Scholar
Fjelland, J.E., Barron, C.R., et al. (2008). A review of the instruments measuring two aspects of meaning: Search for meaning and meaning in illness. Journal of Advanced Nursing, 62, 394–406.Google Scholar
Goldsteen, M., Houtepenb, R., Prootc, I.M., et al. (2006). What is a good death? Terminally ill patients dealing with normative expectations around death and dying. Patient Education and Counseling, 64, 378–386.CrossRefGoogle ScholarPubMed
Gottlieb, B. (2002). Older volunteers: A precious resource under pressure. La Revue Canadienne du Vieillissement, 21, 5–9.Google Scholar
Gourdji, I., McVey, L. & Purden, M. (2009). A quality end of life from a palliative care patient's perspective. Journal of Palliative Care, 25, 40–50.Google Scholar
Hackl, F., Halla, M. & Pruckner, G.J. (2009). Volunteering and the State. Working Paper No. 0901. Linz-Auhof – Austria: Department of Economics Johannes Kepler, University of Linz.Google Scholar
Hall, P. & Weaver, L. (2001). Interdisciplinary education and teamwork: A long and winding road. Medical Education, 35, 867–875.Google Scholar
Illness. (2009). In Merriam-Webster Online Dictionary. http://www.merriam-webster.com/.Google Scholar
Kagawa-Singer, M. (1993). Redefining health: Living with cancer. Social Science & Medicine, 37, 281–283.CrossRefGoogle ScholarPubMed
Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.Google Scholar
Krueger, R.A. (2000). Focus Groups, a Practical Guide for Applied Research. Thousand Oaks: Sage Publications.Google Scholar
Lindqvist, O., Widmark, A. & Rasmussen, B.H. (2006). Reclaiming wellness—living with bodily problems, as narrated by men with advanced prostate cancer. Cancer Nursing, 29, 327–337.Google Scholar
Lipowski, Z.J. (1970). Physical illness, the individual and the coping processes. Psychiatry in Medicine, 1, 91–102.Google Scholar
Lipowski, Z.J. (1983). Psychosocial reactions to physical illness. Canadian Medical Association Journal, 128, 1069–1072.Google ScholarPubMed
Lobchuk, M.M. & Vorauer, J.D. (2003). Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Social Science & Medicine, 57, 2379–2384.CrossRefGoogle ScholarPubMed
Lynn, J., Schuster, J.L., Wilkinson, A., et al. (2007). Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians. New York: Oxford University Press.Google Scholar
Mayer, R. & Ouellet, F. (1991). Méthodologie de Recherche pour les Intervenants Sociaux (Research Methodology for Social Work). Boucherville: Gaëtan Morin Éditeur.Google Scholar
McQuarrie, E.F. & McIntyre, S.H. (1988). Conceptual underpinnings for the use of group interviews in consumer research. Advances in Consumer Research, 1, 580–586.Google Scholar
McQuarrie, E.F. & McIntyre, S.H. (1990). What the group interview can contribute to research on consumer phenomenology. In Research in Consumer Behavior, Vol. 4, Hirshman, E.C. (ed.), pp. 165–194. Greenwich: JAI Press.Google Scholar
Melin-Johansson, C., Axelsson, B. & Danielson, E. (2007). Caregivers' perceptions about terminally ill family members' quality of life. European Journal of Cancer Care, 16, 338–345.CrossRefGoogle ScholarPubMed
Moulin, P. (2000). Les soins palliatifs en France : Un mouvement paradoxal de médicalisation du mourir contemporain (Palliative Care in France: A Paradoxical Movement that Medicalize contemporary dying). Cahiers Internationaux de Sociologie, CVIII, 125–159.Google Scholar
Mount, B.M., Boston, P.H. & Cohen, S.R. (2007). Healing connections: On moving from suffering to a sense of well-being. Journal of Pain and Symptom Management, 33, 372–388.CrossRefGoogle ScholarPubMed
Mystakidou, K., Tsilika, E., Kouloulias, V., et al. (2004). The “Palliative Care Quality of Life Instrument (PQLI)” in terminal cancer patients. Health and Quality of Life Outcomes, www.h910.com/content/12/1/8.Google Scholar
Paillé, P. & Mucchielli, A. (2003). L'Analyse Qualitative en Sciences Humaines et Sociales (Qualitative Analysis in Social Sciences and Humanities). Paris: Armand Collin/VUEF.Google Scholar
Palliative Care Australia. (2005). Standards for Providing Quality Palliative Care for all Australians. Canberra: Palliative Care Australia.Google Scholar
Pastrana, T., Jünger, S., Ostgathe, C., et al. (2008). A matter of definition — key elements identified in a discourse analysis of definitions of palliative care. Palliative Medicine, 22, 222–232.CrossRefGoogle Scholar
Pires, A.P. (1997). Échantillonnage et recherche qualitative: essai théorique et méthodologique (Sampling and Qualitative Research: Theoretical and Methodogical Essay). In La Recherche Qualitative. Enjeux Epistémologiques et Méthodologiques (Qualitative Research: Epislemology and Methodological Challenges), Poupart, J., Deslauriers, J.-P., Groux, L.-H. (eds.), pp. 113–167. Montréal: Gaëtan Morin Éditeur.Google Scholar
Poupart, J. (1997). L'Etretien de Type Qualitatif: Considérations Epistémiologiques, Théoriques et Méthodologiques (The Qualitative Interview: Epistemological, Theoritical and Methodological Reflexions). In La Recherche Qualitative. Enjeux Epistémologiques et Méthodologiques (Qualitative Research: Epistemological and methodology challenges), Poupart, J., Deslauriers, J.-P., Groux, L.-H. (eds.), pp. 173–209. Montréal: Gaëtan Morin Éditeur.Google Scholar
Sévigny, A., Dumont, S., Cohen, S. R., et al. (2009). Helping them live until they die: Volunteer practices in palliative home care. Nonprofit and Voluntary Sector Quarterly, http://nvs.sagepub.com/cgi/rapidpdf/0899764009339074v2.Google Scholar
Steinhauser, K.E., Christakis, N.A., Clipp, E.C., et al. (2000). Factors considered important at the end of life by patients, family, physicians, and other care providers. The Journal of the American Medical Association, 284, 2476–2482.CrossRefGoogle ScholarPubMed
Street, A. & Blackford, J. (2001). Communication issues for the interdisciplinary community palliative care team. Journal of Clinical Nursing, 10, 643–650.Google Scholar
Welsh, E. (2002). Dealing with data: Using NVivo in the qualitative data analysis process [Electronic Version]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 3, http://nbn-resolving.de/urn:nbn:de:0114-fqs0202260.Google Scholar
Worldwide Palliative Care Alliance. (2006). An Advocacy Tool Kit for Hospices and Palliative Care Organisations. London: Worldwide Palliative Care Alliance.Google Scholar
Zimmerman, S., Sloane, P.D., Hanson, L., et al. (2003). Staff perceptions of end-of-life care in long-term care. Journal of the American Medical Directors Association, 4, 23–26.Google Scholar