Open Access Open Access  Restricted Access Subscription or Fee Access

Meanings of participation in hospital care - as narrated by patients

Åsa Nilsson, Birgitta Lindberg, Siv Söderberg, Malin Olsson


Objective: Patient participation is said to be an important factor for patients to experience satisfaction and quality with hospital care. Still, little is known about what participation actually means for patients in the specific context of hospital settings. Therefore, the aim of this study was to elucidate meanings of participation as narrated by patients.

Method: Narrative interviews were conducted during the Autumn of 2013 until the Spring of 2014 and then phenomenological hermeneutically interpreted. In this study, we suggest that the phenomenon of participation in hospital care is experienced by the patient when being a co-creator and seen as an important person in a trustful context.

Results: The results illustrate that an experience of an open, cooperative and coherent environment invites and contributes to participate despite being in a vulnerable situation. The study highlights the importance of responding to each patient as a person, who sometimes has a need to participate actively and sometimes wants to hand over and assume the role of patient in the hospital care setting.

Discussion: Meanings of participation among patients in hospital care can be understood as a phenomenon experienced when being an involved co-creator and seen as an important person in a trustful context. In this study, as well as in previous research it is obvious that participation in hospital care concerns more than being involved in decision-making and receiving information.


Clinical communication, dignity, hospital care, lived experiences, narratives, nursing, patients, patient-clinician relationship, patient participation, patient satisfaction, person-centered healthcare, phenomenological hermeneutic interpretation, qualita

Full Text:



Berglund, M., Westin, L., Svanström, R. & Sundler, A.J. (2012). Suffering caused by care-patients' experiences from hospital settings. International Journal of Qualitative Studies on Health and Well-being 7, 186-188.

Fridh, I., Kenne Sarenmalm, E., Falk, K., Henoch, I., Öhlén, J., Ozanne, A. & Jakobsson Ung, E. (2015). Extensive human suffering: a point prevalence survey of patients' most distressing concerns during inpatient care. Scandinavian Journal of Caring Science 29, 444-453.

Henderson, S. (2003). Power imbalance between nurses and patients: a potential inhibitor of partnership in care. Journal of Clinical Nursing 12, 501-508.

Hyland, D. (2002). An exploration of the relationship between patient autonomy and patient advocacy: implications for nursing practice. Nursing Ethics 9, 472-482.

Irurita, V.F. & Williams, A.M. (2000). Balancing and compromising: nurses and patients preserving integrity of self and each other. International Journal of Nursing Studies 5, 579-589.

Strandberg, G., Åström, G. & Norberg, A. (2002). Struggling to be/ show oneself valuable and worthy to get care. Scandinavian Journal of Caring Science 16, 43-51.

Sørlie, V., Torjuul, K., Ross, A. & Kihlgren, M. (2006). Satisfied patients are also vulnerable patients-narratives from acute care ward. Journal of Clinical Nursing 15, 1240-1246.

Eriksson, K. (2006). The Suffering Human Being. Nordic Studio Press: Chicago.

Cahill, J. (1998). Patient participation - a review of the literature. Journal of Clinical Nursing 7, 119-128.

Florin, J., Ehrenberg, A. & Ehnfors, M. (2006). Patient participation in clinical decision-making in nursing: a comparative study of nurses’ and patients’ perception. Journal of Clinical Nursing 15, 1498-1508.

Randers, I. & Mattiasson, A-C. (2004). Autonomy and integrity: upholding older adult patients’ dignity. Journal of Advanced Nursing 45, 63-71.

Wadensten, B. & Ahlström, G. (2009). The struggle for dignity by people with severe functional disabilities. Nursing Ethics 16, 453-465.

Kitson, A., Marshall, A., Bassett, K. & Zeitz, K. (2013). What are the core elements of patient-centred care? A narrative review and synthesis of the literature from health policy, medicine and nursing. Journal of Advanced Nursing 69, 4-15.

McCormack, B. & McCance, T.V. (2006). Development of a framework for person‐centred nursing. Journal of Advanced Nursing 56, 472-479.

Ekman, I. (ed.). (2014). Personcentrering inom hälso- och sjukvård. Från filosofi till praktik. [Person-centeredness in health care. From philosophy to practice.] Stockholm: Liber.

Cahill, J. (1996). Patient participation: A concept analysis. Journal of Advanced Nursing 24, 561-571.

Sahlsten, M.J.M., Larsson, I.E., Sjöström, B. & Plos, K.A.E. (2008). An analysis of the concept of patient participation. Nursing Forum 43, 2-11.

Eldh, A.C., Ekman, I. & Ehnfors, M. (2006). Conditions for patient participation and non-participation in health care. Nursing Ethics 13, 503-514.

Eldh, A.C., Ekman, I. & Ehnfors, M. (2008). Considering patient non-participation in health care. Health Expectations 11, 263-271.

Tutton, E.M.M. (2005). Patient participation on a ward for frail older people. Journal of Advanced Nursing 50, 143-152.

Obeid, A. (2000). Perceptions of user participation in health care: 3. Journal of Community Nursing 14, 32-36.

Tobiano, G., Marshall, A., Bucknall, T. & Chaboyer, W. (2015). Patient participation in nursing care on medical wards: An integrative review. International Journal of Nursing Studies 52, 1107-1120.

Fröjd, C., Swenne, C.L., Rubertsson, C., Gunningberg, L. & Wadensten, B. (2011). Patient information and participation still in need of improvement: evaluation of patients´ perceptions of quality of care. Journal of Nursing Management 19, 226-236.

Suhonen, R., Papastavrou, E., Efstathiou, G., Tsangari, H., Larosova, D., Leino-Kilpi, H., Patiraki, E., Karlou, C., Balogh, Z. & Merkouris, A. (2012). Patient satisfaction as an outcome of individualized nursing care. Scandinavian Journal of Caring Sciences 26, 372-380.

Eldh, A.C., Ekman, I. & Ehnfors, M. (2010). A comparison of patient participation and patients’ descriptions as related to healthcare definitions. International Journal of Nursing Terminologies and Classifications 21, 21-32.

Thòrarinsdòttir, K. & Kristjànsson, K. (2014). Patients´ perspectives on person-centered participation in healthcare: A framework analysis. Nursing Ethics 21, 129-147.

Sandelowski, M. (1991). Telling stories. Narrative approaches in qualitative research. Journal of Nursing Scholarship 23, 161-166.

Lindseth, A. & Norberg, A. (2004). A phenomenological hermeneutical method for researching lived experience. Scandinavian Journal of Caring Sciences 18, 145-153.

Ricoeur, P. (2011). Homo Capax. Texter av Paul Ricoeur om etik och filosofisk antropologi I urval av Bengt Kristensson Uggla. [ Homo Capax. Texts by Paul Ricoeur on ethics and philosophical anthropology in the selection of Bengt Kristensson Uggla.] Göteborg: Bokförlaget Diadalos AB.

Kristensson Uggla, B. (2014). Personfilosofi – Filosofiska utgångspunkter för personcentrering inom hälso- och sjukvård. In: Personcentrering inom hälso- och sjukvård. Från filosofi till praktik. [Person-centeredness in health care. From philosophy to practice.]. I Ekman (ed.), pp. 21-68. Stockholm: Liber.

Toombs, SK. (1993). The meaning of illness: A phenomenological account of the different perspectives of physician and client. Dordrecht: The Netherlands Kluwer Academic.

Schuster, M. (2006). Profession och Existens. En hermeneutisk studie av asymmetri och ömsesidighet i sjuksköterskors möten med svårt sjuka patienter. [Profession and Existence. A hermeneutical study of asymmetry and reciprocity in the nurses' meetings with seriously ill patients.] Göteborg: Bokförlaget Daidalos AB.

Joolaee, S., Joolaei, A., Tschudin, V., Bahrani, N. & Nikbakht Nasrabadi, A. (2010). Caring relationship: the core component of patients’ rights practice as experienced by patients and their companions. Journal of Medical Ethics and History of Medicine 3, 1-7.

Ricoeur, P. (1992). Oneself as Another. Chicago: The University of Chicago Press.

Kolovos, P., Kaitelidou, D., Lemonidou, C., Sachlas, A., Zyga, S. & Sourtzi, P. (2015). Patient Participation in hospital care: Nursing staffs’point of view. International Journal of Nursing Practice 21, 258-268.

. Kvåle, K. & Bondevik, M. (2008). What is important for patient centered care? A qualitative study about the perceptions of patients with cancer. Scandinavian Journal of Caring Science 22, 582-589.

Tutton, E.M.M. (2005). Patient participation on a ward for frail older people. Journal of Advanced Nursing 50, 143-152.

Edvardsson, D.J., Sandman, P-O. & Rasmussen, B.H. (2005). Sensing an atmosphere of ease: a tentative theory of supporting care settings. Scandinavian Journal of Caring Science 19, 344-353.

Patton, M.Q. (2002). Qualitative research & evaluation methods (3rd edn.). London: Sage.

Dahlberg, K., Dahlberg, H. & Nyström, M. (2008). Reflective lifeworld research. Lund: Studentlitteratur.

Benner, P. (1985). Quality of life: A phenomenological perspective on explanation, prediction, and understanding in nursing science. Advances in Nursing Science 8, 1-14.



  • There are currently no refbacks.