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

Palliative and Supportive Care

Volumn 8, Issue 3, 2010, Pages 325-334

  Sévigny, Andrée ^a,b,c   Cohen, S Robin ^b   Dumont, Serge ^a   Frappier, Annie ^c  

^a UNIVERSITÉ LAVAL   (Canada)

^b MCGILL UNIVERSITY   (Canada)

^c Centre D'excellence sur le Vieillissement de Québec   (Canada)

Author keywords

Health; Illness; Meaning; Palliative Care; Volunteering

Indexed keywords

EID: 77958585746     PISSN: 14789515     EISSN: 14789523     Source Type: Journal    
DOI: 10.1017/S147895151000012X     Document Type: Conference Paper

References (53)

1. 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.
2. Antonovsky, A. (1996). The salutogenic model as a theory to guide health promotion. Health Promotion International, 11, 11-18.
3. Bardin, L. (1986). L'Analyse de Contenu (Content Analysis). Paris: Presses Universitaires de France.
4. Billings, J.A. (1998). What is Palliative Care? Journal of Palliative Medicine, 1, 73.
5. 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.
6. Bircher, J. (2005). Towards a dynamic definition of health and disease. Medicine, Health Care and Philosophy, 8, 335-441.
7. Boström, M. (2004). Cognitive practices and collectives identities within heterogeneous social movement: The Swedish environmental movement. Social Movement Studies, 3, 73-88.
8. Bowers, B.J. (1987). Intergenerational caregiving: Adult caregivers and their aging parents. Advances in Nursing Science, 9, 20-31.
9. Bowers, B.J. (1988). Family perceptions of care in a nursing home. Gerontologist, 28, 361-368.
10. Canadian Hospice Palliative Care Association. (2002). A Model to Guide Hospice Palliative Care. Ottawa: Canadian Hospice Palliative Care Association.
11. 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.
12. 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.
13. Castra, M. (2003). Bien Mourir: Sociologie des Soins Palliatifs (Dying Well: Sociology of Palliative Care). Paris: Presses Universitaires de France.
14. 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.
15. 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.
16. Collie, K. & Long, B.C. (2005). Considering "meaning" in the context of breast cancer. Journal of Health Psychology, 10, 843-853.
17. Davies, P.G. (2007). Between health and illness. Perspectives in Biology and Medicine, 50, 444-452.
18. Deslauriers, J.-P. (1991). Recherche Qualitative: Guide Pratique (Qualitive Research: A Practical Guide). Montre ́al: McGraw-Hill.
19. Dolan, M.B. (1994). The invisible volunteer. The American Journal of Nursing, 94, 59-60.
20. Doyle, D.& Woodruff, R. (2008). The IAHPC Manual of Palliative Care. http://www.hospicecare.com/manual/ IAHPCmanual.htm.
21. Fjelland, J.E., Barron, C.R., et al. (2008). A reviewof the instruments measuring two aspects of meaning: Search for meaning and meaning in illness. Journal of Advanced Nursing, 62, 394-406.
22. 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.
23. Gottlieb, B. (2002). Older volunteers: A precious resource under pressure. La Revue Canadienne du Vieillissement, 21, 5-9.
24. 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.
25. 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.
26. Hall, P. & Weaver, L. (2001). Interdisciplinary education and teamwork: A long and winding road. Medical Education, 35, 867-875.
27. Illness. (2009). In Merriam-Webster Online Dictionary. http://www.merriam-webster.com/.
28. Kagawa-Singer, M. (1993). Redefining health: Living with cancer. Social Science & Medicine, 37, 281-283.
29. Kleinman, A. (1988). The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.
30. Krueger, R.A. (2000). Focus Groups, a Practical Guide for Applied Research. Thousand Oaks: Sage Publications.
31. 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.
32. Lipowski, Z.J. (1970). Physical illness, the individual and the coping processes. Psychiatry in Medicine, 1, 91-102.
33. Lipowski, Z.J. (1983). Psychosocial reactions to physical illness. Canadian Medical Association Journal, 128, 1069-1072.
34. 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.
35. 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.
36. Mayer, R. & Ouellet, F. (1991). Méthodologie de Recherche pour les Intervenants Sociaux (Research Methodology for Social Work). Boucherville: Gaëtan Morin E ́ diteur.
37. 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.
38. 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.
39. 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.
40. 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.
41. 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.
42. Mystakidou, K., Tsilika, E., Kouloulias, V., et al. (2004). The "Palliative Care Quality of Life Instrument (PQLI)" in terminal cancer patients. Health andQuality of Life Outcomes, www.h910.com/content/12/1/8.
43. Paillé, P. & Mucchielli, A. (2003). L'Analyse Qualitative en Sciences Humaines et Sociales (Qualitative Analysis in Social Sciences and Humanities). Paris: Armand Collin/ VUEF.
44. Palliative Care Australia. (2005). Standards for Providing Quality Palliative Care for all Australians. Canberra: Palliative Care Australia.
45. 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.
46. Pires, A.P. (1997). E ́ chantillonnage et recherche qualitative: essai théorique et méthodologique (Sampling and Qualitative Research: Theoretical and Methodogical Essay). InLa RechercheQualitative. 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 E ́ diteur.
47. 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 E ́ diteur.
48. 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.
49. 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.
50. Street, A. & Blackford, J. (2001). Communication issues for the interdisciplinary community palliative care team. Journal of Clinical Nursing, 10, 643-650.
51. 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.
52. Worldwide Palliative Care Alliance. (2006). An Advocacy Tool Kit for Hospices and Palliative Care Organisations. London: Worldwide Palliative Care Alliance.
53. Zimmerman, S., Sloane, P.D.,Hanson, L., et al. (2003). Staff perceptions of end-of-life care in long-term care. Journal of the AmericanMedical Directors Association, 4, 23-26.