Skip to main content Accessibility help

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

  • Andrée Sévigny (a1) (a2) (a3) (a4), S. Robin Cohen (a2), Serge Dumont (a3) and Annie Frappier (a4)



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.”


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.


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.


Corresponding author

Address correspondence and reprint requests to: Andrée Sévigny, Hôpital St-Sacrement, 1050 Chemin Ste-Foy, Québec (Québec), G1S 4L8, Canada. Email:


Hide All
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, 335340.
Antonovsky, A. (1996). The salutogenic model as a theory to guide health promotion. Health Promotion International, 11, 1118.
Bardin, L. (1986). L'Analyse de Contenu (Content Analysis). Paris: Presses Universitaires de France.
Billings, J.A. (1998). What is Palliative Care? Journal of Palliative Medicine, 1, 73.
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, 653658.
Bircher, J. (2005). Towards a dynamic definition of health and disease. Medicine, Health Care and Philosophy, 8, 335441.
Boström, M. (2004). Cognitive practices and collectives identities within heterogeneous social movement: The Swedish environmental movement. Social Movement Studies, 3, 7388.
Bowers, B.J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents. Advances in Nursing Science, 9, 2031.
Bowers, B.J. (1988). Family perceptions of care in a nursing home. Gerontologist, 28, 361368.
Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care. Ottawa: Canadian Hospice Palliative Care Association.
Carstairs, S. (2005). Still Not There. Quality End-of-Life Care: A Progress Report. Not There June 2005.pdf.
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, 14931498.
Castra, M. (2003). Bien Mourir: Sociologie des Soins Palliatifs (Dying Well: Sociology of Palliative Care). Paris: Presses Universitaires de France.
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, 4858.
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, 18541865.
Collie, K. & Long, B.C. (2005). Considering “meaning” in the context of breast cancer. Journal of Health Psychology, 10, 843853.
Davies, P.G. (2007). Between health and illness. Perspectives in Biology and Medicine, 50, 444452.
Deslauriers, J.-P. (1991). Recherche Qualitative: Guide Pratique (Qualitive Research: A Practical Guide). Montréal: McGraw-Hill.
Dolan, M.B. (1994). The invisible volunteer. The American Journal of Nursing, 94, 5960.
Doyle, D. & Woodruff, R. (2008). The IAHPC Manual of Palliative Care.
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, 394406.
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, 378386.
Gottlieb, B. (2002). Older volunteers: A precious resource under pressure. La Revue Canadienne du Vieillissement, 21, 59.
Gourdji, I., McVey, L. & Purden, M. (2009). A quality end of life from a palliative care patient's perspective. Journal of Palliative Care, 25, 4050.
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.
Hall, P. & Weaver, L. (2001). Interdisciplinary education and teamwork: A long and winding road. Medical Education, 35, 867875.
Illness. (2009). In Merriam-Webster Online Dictionary.
Kagawa-Singer, M. (1993). Redefining health: Living with cancer. Social Science & Medicine, 37, 281283.
Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
Krueger, R.A. (2000). Focus Groups, a Practical Guide for Applied Research. Thousand Oaks: Sage Publications.
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, 327337.
Lipowski, Z.J. (1970). Physical illness, the individual and the coping processes. Psychiatry in Medicine, 1, 91102.
Lipowski, Z.J. (1983). Psychosocial reactions to physical illness. Canadian Medical Association Journal, 128, 10691072.
Lobchuk, M.M. & Vorauer, J.D. (2003). Family caregiver perspective-taking and accuracy in estimating cancer patient symptom experiences. Social Science & Medicine, 57, 23792384.
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.
Mayer, R. & Ouellet, F. (1991). Méthodologie de Recherche pour les Intervenants Sociaux (Research Methodology for Social Work). Boucherville: Gaëtan Morin Éditeur.
McQuarrie, E.F. & McIntyre, S.H. (1988). Conceptual underpinnings for the use of group interviews in consumer research. Advances in Consumer Research, 1, 580586.
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. 165194. Greenwich: JAI Press.
Melin-Johansson, C., Axelsson, B. & Danielson, E. (2007). Caregivers' perceptions about terminally ill family members' quality of life. European Journal of Cancer Care, 16, 338345.
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, 125159.
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, 372388.
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,
Paillé, P. & Mucchielli, A. (2003). L'Analyse Qualitative en Sciences Humaines et Sociales (Qualitative Analysis in Social Sciences and Humanities). Paris: Armand Collin/VUEF.
Palliative Care Australia. (2005). Standards for Providing Quality Palliative Care for all Australians. Canberra: Palliative Care Australia.
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, 222232.
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. 113167. Montréal: Gaëtan Morin Éditeur.
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. 173209. Montréal: Gaëtan Morin Éditeur.
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,
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, 24762482.
Street, A. & Blackford, J. (2001). Communication issues for the interdisciplinary community palliative care team. Journal of Clinical Nursing, 10, 643650.
Welsh, E. (2002). Dealing with data: Using NVivo in the qualitative data analysis process [Electronic Version]. Forum Qualitative Sozialforschung / Forum: Qualitative Social Research, 3,
Worldwide Palliative Care Alliance. (2006). An Advocacy Tool Kit for Hospices and Palliative Care Organisations. London: Worldwide Palliative Care Alliance.
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, 2326.



Full text views

Total number of HTML views: 0
Total number of PDF views: 0 *
Loading metrics...

Abstract views

Total abstract views: 0 *
Loading metrics...

* Views captured on Cambridge Core between <date>. This data will be updated every 24 hours.

Usage data cannot currently be displayed