Hostname: page-component-cd9895bd7-7cvxr Total loading time: 0 Render date: 2024-12-26T09:25:21.441Z Has data issue: false hasContentIssue false

Who Wants to be involved? Decision-Making Preferences among Residents of Long-Term Care Facilities

Published online by Cambridge University Press:  13 September 2016

Laura M. Funk*
Affiliation:
University of Victoria
*
Laura M. Funk, Centre on Aging, P.O. Box 1700, STN CSC, University of Victoria, Victoria, BC V8W 2Y2, ([email protected])

Abstract

While the benefits of participating in care or medical decision making are widely reported, research on decision-making participation preferences usually reveals some portion of individuals who do not want to be involved. Data collected through structured, in-person interviews with 100 residents of six long-term care (LTC) facilities in Victoria, British Columbia, were used to examine participation preferences with respect to four types of care decisions (bedtimes, medication choice, room transfer, and advance directives), as well as predictors of these preferences. Residents with higher levels of formal education, a greater number of chronic conditions, and greater confidence about the worth of their input tend to prefer more active involvement in decision making. This research also suggests that predictors of preference for independent control over decision making (active involvement) differ from predictors of preference for joint or shared decision making. Implications for the empowerment of LTC facility residents and the meaning of decision-making involvement in these environments are discussed.

Résumé

Les bienfaits de la participation aux soins ou aux décisions médicales sont largement rapportés, pourtant l'examen des préférences en matière de participation révèle que certaines personnes ne souhaitent pas s'impliquer dans ce processus. Nous nous sommes servis des données recueillies au cours d'entrevues structurées, menées en tête-à-tête avec une centaine de pensionnaires de six établissements de soins de longue durée (SLD) de Victoria, en Colombie-Britannique, pour étudier les préférences en matière de participation liées à quatre types de décisions de soins (heures du coucher, choix de médicaments, transfert dans une autre chambre et directives préalables), et les prédicteurs de ces préférences. En général, les pensionnaires ayant un plus haut niveau d'instruction, un plus grand nombre d'affections chroniques et une plus grande confiance dans leur jugement préfèrent participer plus activement aux décisions. Nos travaux suggèrent également que les prédicteurs de préférence liés au contrôle indépendant de la prise de décisions (la participation ≪ active ≫) diffèrent des prédicteurs de préférence liés à la prise de décisions concertée. Nous explorons les retombées de l'habilitation des pensionnaires d'établissement de SLD et le rôle de la participation à la prise de décisions dans ces cadres de soins.

Type
Research Article
Copyright
Copyright © Canadian Association on Gerontology 2004

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.)

Footnotes

*

This research was conducted as part of the M.A. degree program at the University of Victoria and was supported by a studentship award from the British Columbia Health Research Foundation (now the Michael Smith Foundation for Health Research).

References

Allshouse, K. (1993). Treating patients as individuals. In Gerteis, M., Edgman-Levitan, S., Daley, J., and Delbanco, T., (Eds.), Through the patient's eyes: Understanding and promoting patient-centred care (pp. 1944). San Francisco: Jossey Bass.Google Scholar
Arling, G., Harkins, E., & Capitman, J. (1986). Institutionalization and personal control: A panel study of impaired older people. Research on Aging, 8(1), 3856.CrossRefGoogle ScholarPubMed
Ashworth, P., Longmate, M., & Morrison, P. (1992). Patient participation: Its meaning and significance in the context of caring. Journal of Advanced Nursing, 17, 14301439.CrossRefGoogle ScholarPubMed
Beaver, K., Luker, K., Owens, R., Leinster, S., Degner, L., & Sloan, J. (1996). Treatment decision-making in women newly diagnosed with breast cancer. Cancer Nursing, 19(1), 819.CrossRefGoogle ScholarPubMed
Benbassat, J., Pilpel, D., & Tidhar, M. (1998). Patients' preferences for participation in clinical decision-making: A review of published surveys. Journal of Behavioral Medicine, 24(summer), 8188.CrossRefGoogle ScholarPubMed
Biley, F. (1992). Some determinants that effect patient participation in decision-making about nursing care. Journal of Advanced Nursing, 17, 414421.CrossRefGoogle ScholarPubMed
Blanchard, C., Labrecque, M., Ruckdeschel, J., & Blanchard, E. (1988). Information and decision-making preferences of hospitalized adult cancer patients. Social Science and Medicine, 27(11), 11391145.CrossRefGoogle ScholarPubMed
Collopy, B. (1988). Autonomy in long-term care: Some cru-cial distinctions. Gerontologist, 28(Suppl.), 1017.CrossRefGoogle Scholar
Clark, P. & Bowling, A. (1990). Quality of everyday life in long stay institutions for the elderly: An observational study of long stay hospital and nursing home care. Social Science and Medicine, 30(11), 12011210.CrossRefGoogle ScholarPubMed
Davidson, H., & O'Connor, B. (1990). Perceived control and acceptance of the decision to enter a nursing home as predictors of adjustment. International Journal of Aging and Human Development, 32(4), 307318.CrossRefGoogle Scholar
Davison, B., Degner, L., & Morgan, T. (1995). Information and decision making preferences of men with prostate cancer. Oncology Nursing Forum, 22(9), 14011408.Google ScholarPubMed
Deber, R., Kraetschmer, N., & Irvine, J. (1996). What role do patients wish to play in treatment decision-making? Archives of Internal Medicine, 156, 14141420.CrossRefGoogle ScholarPubMed
Degner, L., Kristjanson, L., Bowman, D., Sloan, J., Carriere, C., O'Neil, J., Bilodeau, B., et al. (1997). Information needs and decisional preferences in women with breast cancer. Journal of the American Medical Association, 277(18), 14851492.CrossRefGoogle ScholarPubMed
Dennis, K. (1990). Patients' control and the information imperative: Clarification and confirmation. Nursing Research, 39(3), 162166.CrossRefGoogle ScholarPubMed
Donaldson, C., Lloyd, P., & Lupton, D. (1991). Primary health care consumerism amongst elderly Australians. Age and Ageing, 20, 280286.CrossRefGoogle ScholarPubMed
Dunkle, R., Coulton, C., MacKintosh, J., & Goode, R. (1982). Factors affecting the post-hospital care planning of elderly patients in an acute care setting. Journal of Gerontological Social Work, 4(3/4), 95106.CrossRefGoogle Scholar
Everard, K., Rowles, G., & High, D. (1994). Nursing home room changes: Toward a decision-making model. Gerontologist, 3–4(4), 530–527.Google Scholar
Gecas, V. (1989). The social psychology of self-efficacy. Annual Review of Sociology, 15, 291316.CrossRefGoogle Scholar
Goffman, E. (1961). Asylums: Essays on the social situation of mental patients and other inmates. Garden City, NY: Doubleday.Google Scholar
Guagnoli, E., & Ward, P. (1998). Patient participation in decision-making. Social Science and Medicine, 47(3), 329339.CrossRefGoogle Scholar
Hack, T., Degner, L., & Dyck, D. (1994). Relationship between preferences for decisional control and illness information among women with breast cancer: A quantitative and qualitative analysis. Social Science and Medicine, 39(2), 279289.CrossRefGoogle ScholarPubMed
Haug, M. & Lavin, B. (1981). Practitioner or Patient: Who's in charge? Journal of Health and Social Behaviour, 22(3), 212229.CrossRefGoogle ScholarPubMed
Hibbard, J., & Weeks, E. (1987) Consumerism in health care: Prevalence and predictors. Medical Care, 25(11), 10191032.CrossRefGoogle ScholarPubMed
High, D., & Rowles, G. (1995). Nursing home residents, families and decision making: Toward an understanding of progressive surrogacy. Journal of Aging Studies, 9(2), 101117.CrossRefGoogle Scholar
Higgs, P., MacDonald, L., MacDonald, J., & Ward, M. (1998). Home from home: Residents' opinions of nursing homes and long-stay wards. Age and Ageing, 27(2), 199205.CrossRefGoogle ScholarPubMed
Hofland, B. (1988). Autonomy in long-term care: Background issues and a programmatic response. The Gerontologist, 28(Suppl.), 39.CrossRefGoogle Scholar
Iwasiw, C., Goldenberg, D., MacMaster, E., McCutcheon, S., & Bol, N. (1996). Residents' perspectives of their first two weeks in a long-term care facility. Journal of Clinical Nursing, 5, 381388.CrossRefGoogle Scholar
Kane, R. (1990). Everyday life in nursing homes: ‘The way things are.’ In Kane, R. & Caplan, A. (Eds.), Everyday ethics: Resolving dilemmas in nursing home life (pp. 320). New York: Springer.Google Scholar
Kapp, M. (1981). Health care decision making by the elderly: I get by with a little help from my family. The Gerontologist, 32(5), 619623.Google Scholar
Kohn, M., & Slomczynski, K. (1993). Social structure and self-direction: A comparative analysis of the U.S. and Poland. Cambridge: Blackwell.Google Scholar
Larsson, U., Svardsudd, K., Wedel, H., & Saljo, R. (1989). Patient involvement in decision-making in surgical and orthopaedic practice: The project perioperative risk. Social Science and Medicine, 28(8), 829835.CrossRefGoogle ScholarPubMed
Lidz, C., & Arnold, R. (1990). Institutional constraints on autonomy. Generations, 14 (69, Suppl.), 5668.Google ScholarPubMed
Lidz, C., Meisel, A., Osterweis, M., Holden, J., Marx, J., & Munetz, M. (1983). Barriers to informed consent. Annals of Internal Medicine, 99(4), 539543.CrossRefGoogle ScholarPubMed
Lupton, D. (1997). Consumerism, reflexivity, and the medical encounter. Social Science and Medicine, 45(3), 373381.CrossRefGoogle ScholarPubMed
Mhatre, S., & Deber, R. (1992). From equal access to health care to equitable access to health: A review of Canadian provincial health commissions and reports. International Journal of Health Services, 22(4), 645668.CrossRefGoogle ScholarPubMed
Mirowksy, J. & Ross, C. (1998). Education, personal control, lifestyle, and health: A human capital hypothesis. Research on Aging, 20(4), 415449.Google Scholar
Moody, H. (1988). From informed consent to negotiated consent. Gerontologist, 28(Suppl.), 6470.CrossRefGoogle ScholarPubMed
Morganti, J., Nehrke, M., & Hulicka, I. (1980). Resident and staff perceptions of latitude of choice in elderly institutionalized men. Experimental Aging Research, 6(4), 367385.CrossRefGoogle ScholarPubMed
Morris, J. (1997). Care or empowerment? A disability rights perspective. Social Policy and Administration, 32(1), 5460.CrossRefGoogle Scholar
Nystrom, A., & Segesten, K. (1994). On sources of powerlessness in nursing home life. Journal of Advanced Nursing, 19, 124133.CrossRefGoogle ScholarPubMed
Rodin, J. (1986). Health, control and aging. In Baltes, M., & Baltes, P. (Eds.), The psychology of control and aging. Hillsdale, NJ: Lawrence Erlbaum.Google Scholar
Rothbaum, F., Weisz, J., & Snyder, S. (1982). Changing the world and changing the self: A two-process model of perceived control. Journal of Personality and Social Psychology, 42(1), 537.CrossRefGoogle Scholar
Ryden, M. (1984). Morale and perceived control in institutionalized elderly. Nursing Research, 33(3), 130136.CrossRefGoogle ScholarPubMed
Schwarzer, R., & Fuchs, R. (1995). Changing risk behaviors and adopting health behaviors: The role of self-efficacy beliefs. In Bandura, A. (Ed.), Self-efficacy in changing societies (pp. 259288). New York: Cambridge University Press.CrossRefGoogle Scholar
Sensky, T., & Catalan, J. (1992, November 7). Asking patients about their treatment: Why their answers should not always be taken at face value. British Medical Journal, 305, 1109–1100.CrossRefGoogle Scholar
Smith, R., Strudler Wallston, B., Wallston, K., Forsberg, P., & King, J. (1984). Measuring desire for control of health care processes. Journal of Personality and Social Psychology, 47(2), 415426.CrossRefGoogle ScholarPubMed
Solomon, K. (1982). Social antecedents of learned helplessness in the health care setting. Gerontologist, 22(3), 282287.CrossRefGoogle ScholarPubMed
Strull, W., Lo, B., & Charles, G. (1984). Do patients want to participate in medical decision-making? Journal of the American Medical Association, 252(21), 29902994.CrossRefGoogle ScholarPubMed
Thompson, S., Pitts, J., & Schwankovsky, L. (1993). Preferences for involvement in medical decision-making: Situational and demographic influences. Patient Education and Counselling, 22, 133140.CrossRefGoogle ScholarPubMed
Tobin, S. (1995). Fostering family involvement in institutional care. In Smith, G., Tobin, S., & Power, P. (Eds.), Strengthening aging families: Diversity in practice and policy (pp. 2544). Thousand Oaks, CA: Sage.Google Scholar
Trnobranski, P. (1994). Nurse-patient negotiation: Assumption or reality? Journal of Advanced Nursing, 19, 733737.CrossRefGoogle ScholarPubMed
Vertinsky, I., Thompson, W., & Uyeno, D. (1974). Measuring consumer desire for participation in clinical decision making. Health Services Research, 9, 121134.Google ScholarPubMed
Waterworth, S., & Luker, K. (1990). Reluctant collaborators: Do patients want to be involved in decisions concerning care? Journal of Advanced Nursing, 15, 971976.CrossRefGoogle ScholarPubMed
Wetle, T. (1991). Resident decision-making and quality of life in the frail elderly. In Birren, J., Lubben, J., Cichowlas Rowe, J., & Deutchman, D. (Eds.), The concept and measurement of quality of life in the frail elderly (pp. 279296). San Diego, CA: Harcourt Brace Jovanovich/Academic Press.CrossRefGoogle Scholar
Wetle, T., Levkoff, S., Cwikel, J., & Rosen, A. (1988). Nursing home resident participation in medical decisions: Perceptions and preferences. Gerontologist, 28(Suppl.), 3238.CrossRefGoogle ScholarPubMed
White, C., & Janson, P. (1986). Helplessness in institutional settings: Adaptation or iatrogenic disease? In Baltes, M., & Baltes, P. (Eds.), The psychology of control and aging (pp. 297313). Hillsdale, NJ: Lawrence Erlbaum.Google Scholar