Open Access Open Access  Restricted Access Subscription Access

Prostate cancer patients' experience of involvement in decision-making. A phenomenological hermeneutic study.

Mette Loewe Netsey-Afedo, Regner Birkelund

Abstract


Background: Shared decision-making (SDM) is a process increasingly recommended as a mean of involving patients in their care. Research shows, however, that it is infrequently employed in everyday clinical practice. Only limited research has been carried out concerning prostate cancer patients’ experiences of being involved in the course of their disease and whether they experience being informed in a relevant way. In Denmark this area remains under investigated. Patient satisfaction, treatment results and patient safety can be improved if patients are involved in decision-making concerning the course of their disease. Studies have shown that many prostate cancer patients prefer to engage in SDM with their doctor.

Aim: We aimed to examine prostate cancer patients' experience of becoming involved in decision-making concerning the course of their disease, as well as to examine whether they felt sufficiently informed.

Method: This study is based on qualitative semi-structured life-world interviews of 6 prostate cancer patients. The interviews were carried out in the participants’ homes during March and April 2014. The interpretation of the data is based on Paul Ricoeur’s phenomenological-hermeneutic theory of interpretation.

Results: Through analysis and interpretation of the data, two themes were identified: (1) Following the procedure (2) Like being a parcel at the mail distribution centre. The patients experienced being sent through a standard procedure with a one-sided focus on examinations and treatment issues. Recurring themes in the patients’ narratives were insufficient communication, objectification and lack of involvement in decisions concerning their disease and treatment.

Conclusion: It is concluded that most patients do not become involved in decision-making and do not feel sufficiently informed. This observation has direct implications for the extent to which care provision is person-centered.


Keywords


Prostate cancer, Experiences, Ricoeur, Phenomenological hermeneutical, Shared Decision Making, Patient involvement

Full Text:

PDF

References


Lomborg, K. (2013). Tiltrædelsesforelæsning: Hvad er patientinvolvering, og hvordan virker det? Klinisk Sygepleje 27, 6-20.

Sundhedsstyrelsen. (2005). Kræftplan II: Sundhedsstyrelsens anbefalinger til forbedringer af indsatsen på kræftområdet. Version: 1.0.

Sundhedsstyrelsen. (2010). Styrket indsats på kræftområdet - et sundhedsfagligt oplæg. 2010.

NHS England (2014). NHS England commitment to Shared Decision Making. Available at: http://www.england.nhs.uk/ourwork/pe/sdm/commitment/. Accessed May 10, 2015.

Abram, M.B., Ballantine, H.T., Dunlop, G.R. et al. (1982). Making Health Care Decisions. The Ethical and Legal Implications of Informed Consent in the Patient-Practitioner Relationship. President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, U.S. Government Printing Office Washington, D.C. 20402.

Makoul, G. & Clayman, M.L. (2006). An integrative model of shared decision making in medical encounters. Patient Education and Counseling 60, 301-312.

Da Silva, D. (2012). Evidence: Helping people share decision making. A review of evidence considering weather shared decision making is worthwhile. London: The Health Foundation.

Jacobsen, C.B., Pedersen, V.H. & Albeck, K. (2008). Patientinddragelse mellem ideal og virkelighed - en empirisk undersøgelse af fælles beslutningstagning og dagligdagens møder mellem patient og behandler. København: Sundhedsstyrelsen, Monitorering & Medicinsk Teknologivurdering, 2008 Medicinsk Teknologivurdering - puljeprojekter 2008; 8(3)/DSI Rapport 2008.07.

Coulter, A. & Collins, A. (2011). Making Shared Decision-making a Reality. No decision about me, without me. London: The King's Fund.

Holmes-Rovner, M., Gruman, J., Rovner, D.R. (2007). Shared decision-making in the US - research & development outpaces delivery. Zeitschrift für ärztliche Fortbildung und Qualität im Gesundheitswesen - German Journal for Quality in Health Care 101, 254-258.

Hornberger, J.C., Habraken, H. & Bloch, D.A. (1995). Minimum Data Needed on Patient Preferences for Accurate, Efficient Medical Decision Making. Medical Care 33, 297-310.

Kassirer, J.P. (1998). Managing Care - Should We Adopt a New Ethic? New England Journal of Medicine 339, 397-398.

Coulter, A. (2012). Leadership for patient engagement. London: The King's Fund.

Den Nationale Arbejdsgruppe for Patientsikkerhed i Kræftforløb. (2012). Patientsikkerhed i Kræftforløb. Statusrapport 2012. København: Kvalitet & Patientsikkerhed, Kræftens Bekæmpelse.

Bandura A. (1997). Self-efficacy: The Exercise of Control. New York: W.H. Freeman.

Zachariae, B. (1996). Mind and immunity: psychological modulation of immunological and inflammatory parameters. København: Munksgaard/Rosinante.

Sandager, M.T., Sperling, C., Vinter, M.M., Dahllöf, L.S., Bæksted, C. & Knudsen, J.L. (2013). Kræftens Bekæmpelses Barometerundersøgelse, 2013. Kræftramtes behov og oplevelser gennem behandling og i efterforløbet. København: Kvalitet & Patientsikkerhed, Kræftens Bekæmpelse.

Cancer Research UK (2014). Prostate cancer mortality statistics. Available at: http://www.cancerresearchuk.org/cancer-info/cancerstats/types/prostate/mortality/uk-prostate-cancer-mortality-statistics#geog. Accessed May 10, 2015.

Denis L., Joniau S., Bossi, A., Baskin-Bey, E. & Fitzpatrick J.M. (2012). PCA: Prostate cancer, patient-centred approach or both? BJU International 110, 16-22.

Wong F., Stewart, D.E., Dancey, J., Meana, M., McAndrews, M.P., Bunston, T. & Cheung, A.M. (2000). Men with prostate cancer: influence of psychological factors on informational needs and decision making. Journal of Psychosomatic Research 49, 13-19.

Boehmer, U. & Clark, J.A. (2001). Married couples' perspectives on prostate cancer diagnosis and treatment decision-making. Psycho-Oncology 10, 147-155.

Sinfield, P., Baker, R., Agarwal, S. & Tarrant, C. (2008). Patient-centred care: What are the experiences of prostate cancer patients and their partners? Patient Education and Counseling 73, 91-96.

O'Rourke, M. & Germino, B.B. (2000). From Two Perspectives to One Choice: Blending Couple and Individual Views of Prostate Cancer Treatment Selection. Journal of Family Nursing 6, 231-251.

Cohen H. & Britten, N. (2003). Who decides about prostate cancer treatment? A qualitative study. Family Practice 20, 724-729.

Fowler Jr., F.J., Gallagher, P.M., Bynum, J.P.W., Barry, M.J., Lucas, F.L. & Skinner, J.S. (2012). Decision-Making Process Reported by Medicare Patients Who Had Coronary Artery Stenting or Surgery for Prostate Cancer. Journal of General Internal Medicine 27, 911-916.

Seale, C. (2005). Portrayals of treatment decision-making on popular breast and prostate cancer web sites. European Journal of Cancer Care 14, 171-174.

Ricœur, P. (1973). Filosofiens kilder (The sources of philosophy). København: Vintens Forlagsboghandel A/S.

Ricœur, P. (1979). Fortolkningsteori (Theory of interpretation). København: Vintens Forlag.

Kvale, S. & Brinkmann, S. (2009). Interview: introduktion til et håndværk (‪InterViews: Learning the Craft of Qualitative Research Interviewing)‬. 2nd edn. København: Hans Reitzel Forlag.‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬‬

Datatilsynet. (2013). Available at: http://www.datatilsynet.dk. Accessed March 15, 2014.

Northern Nurses’ Federation. (2003). Nordic Nurses’ Federation Ethical guidelines for nursing reserarch in the Nordic countries. Denmark: Det Sygeplejeetiske Råd i Danmark. Danish Nurses Organisation.

Ricoeur, P. (1973). The Hermeneutical Function of Distanciation. Philosophy Today 17, 129-141.

Buber, M. (1997). Jeg og du (I and Thou.). 3rd edn. København: Hans Reitzel.

Martinsen, K. (2001). Øjet og kaldet. 1st edn. København: Munksgaard Danmark.

Joseph-Williams N., Elwyn G. & Edwards, A. (2014). Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Education and Counseling 94, 291-309.

Zoffmann, V. & Kirkevold, M. (2007). Relationships and Their Potential for Change Developed in Difficult Type 1 Diabetes. Qualitative Health Research 17, 625-638.

Dahlberg, K., Dahlberg, H. & Nyström, M. (2008). Methods for lifeworld reseach - data gathering. In: Reflective lifeworld research. 2nd edn., pp. 171-229. Lund: Studentlitteratur.




DOI: http://dx.doi.org/10.5750/ejpch.v4i2.1083

Refbacks

  • There are currently no refbacks.