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Patient participation: what it is and what it is not
Örebro University, Department of Health Sciences.ORCID iD: 0000-0002-7737-169X
2006 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

In general, patient participation is regarded as being informed and partaking in decision making regarding one’s care and treatment. This interpretation is common in legislation throughout the Western world and corresponding documents guiding health care professionals, as well as in scientific studies. Even though this understanding of the word participation can be traced to a growing emphasis on individuals’ autonomy in society and to certain dictionary defi nitions, there are other ways of understanding participation from a semantic point of view, and no trace of patients’ descriptions of what it is to participate can be found in these definitions.

Hence, the aim of this dissertation was to understand patients’ experience of the phenomenon of patient participation. An additional aim was to understand patients’ experience of non-participation and to describe the conditions for patient participation and non-participation, in order to understand the prerequisites for patient participation.

The dissertation comprises four papers. The philosophical ideas of Ricoeur provided a basis for the studies: how communication can present ways to understand and explain experiences of phenomena through phenomenological hermeneutics. The first and second studies involved a group of patients living with chronic heart failure. For the fi rst study, 10 patients were interviewed, with a narrative approach, about their experience of participation and non-participation, as defi ned by the participants. For the second study, 11 visits by three patients at a nurse-led outpatient clinic were observed, and consecutive interviews were performed with the patients and the nurses, investigating what they experience as patient participation and non-participation. A triangulation of data was performed to analyse the occurrence of the phenomena in the observed visits. For paper 3 and 4, a questionnaire was developed and distributed among a diverse group of people who had recent experience of being patients. The questionnaire comprised respondent’s description of what patient participation is, using items based on findings in Study 1, along with open-ended questions for additional aspects and general issues regarding situations in which the respondent had experienced patient participation and/or non-participation.

The findings show additional aspects to patient participation: patient participation is being provided with information and knowledge in order for one to comprehend one’s body, disease, and treatment and to be able to take self-care actions based on the context and one’s values. Participation was also found to include providing the information and knowledge one has about the experience of illness and symptoms and of one’s situation. Participation occurs when being listened to and being recognised as an individual and a partner in the health care team. Non-participation, on the other hand, occurs when one is regarded as a symptom, a problem to be solved. To avoid non-participation, the information provided needs to be based on the individual’s need and with recognition of the patient’s knowledge and context.

In conclusion, patient participation needs to be reconsidered in health care regulations and in clinical settings: patients’ defi nitions of participation, found to be close to the dictionaries’ description of sharing, should be recognised and opportunities provided for sharing knowledge and experience in two-way-communication.

Place, publisher, year, edition, pages
Örebro: Örebro universitetsbibliotek , 2006. , p. 96
Series
Örebro Studies in Care Sciences, ISSN 1652-1153 ; 11
Keywords [en]
patient participation, non-participation, phenomenological hermeneutics, communication
National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
URN: urn:nbn:se:oru:diva-734ISBN: 91-7668-503-9 (print)OAI: oai:DiVA.org:oru-734DiVA, id: diva2:137201
Public defence
2006-12-06, Aulan, Örebro universitet, Örebro, 13:00 (English)
Opponent
Supervisors
Available from: 2006-11-14 Created: 2006-11-14 Last updated: 2020-01-29Bibliographically approved
List of papers
1. The phenomena of participation and non-participation in health care: experiences of patients attending a nurse-led clinic for chronic heart failure
Open this publication in new window or tab >>The phenomena of participation and non-participation in health care: experiences of patients attending a nurse-led clinic for chronic heart failure
2004 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 3, no 3, p. 239-246Article in journal (Refereed) Published
Abstract [en]

Background: Patient participation is stressed in the health care acts of many western countries yet a common definition of the concept is lacking. The understanding of experiences of patients with chronic heart failure (CHF) who attend nurse-led specialist clinics, a form of care suggested as beneficiary to this group, may promote a better understanding of participation. Aim: To investigate the meanings of participation and non-participation as experienced by patients living with CHF. Methods: Narrative interviews analysed in the phenomenological hermeneutic tradition inspired by Ricoeur where the interpretation is made in the hermeneutic circle, explaining and understanding the experienced phenomena. Findings: Participation was experienced as to “be confident”, “comprehend” and “seek and maintain a sense of control”. Non-participation was experienced as to “not understand”, “not be in control”, “lack a relationship” and “not be accountable”. The findings indicate that the experiences of participation and non-participation can change over time and phases of the disease and treatment. Conclusion: The study suggests an extended view on the concept of participation. Patients' experiences of participation in health care can vary and should therefore be an issue for dialogue between nurses and patients with CHF in nurse-led specialist clinics.

National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-3169 (URN)10.1016/j.ejcnurse.2004.05.001 (DOI)
Available from: 2006-11-14 Created: 2006-11-14 Last updated: 2020-01-29Bibliographically approved
2. The meaning of patient participation for patients and nurses at a nurse-led clinic for chronic heart failure
Open this publication in new window or tab >>The meaning of patient participation for patients and nurses at a nurse-led clinic for chronic heart failure
2006 (English)In: European Journal of Cardiovascular Nursing, ISSN 1474-5151, E-ISSN 1873-1953, Vol. 5, no 1, p. 45-53Article in journal (Refereed) Published
Abstract [en]

BackgroundThe legislation of many Western countries emphasizes active patient participation. Patients with chronic heart failure (CHF), however, have experienced participation differently from the general interpretation of legal definitions. Education improves uptake of self-management strategies yet knowledge is lacking about support of patients' own resources in CHF.

AimTo explore the phenomena of patient participation and non-participation as shown in patient visits to a nurse-led clinic for CHF and as experienced by the patients and nurses.

MethodsData triangulation of field notes from participatory observations and texts from narrative interviews with the patients and assigned nurse specialists. Data were analyzed according to the phenomenological hermeneutic tradition.

FindingsPatients' experience of participation and non-participation was interpreted as “Being responsible and accepting responsibility” and “Lacking an equal relationship while being controlled”, respectively. Nurses experienced patient participation as “Getting information and security to act” and patient non-participation as “Not accepting”.

ConclusionConflicting values of patients and nurses, which were interpreted with respect to participation and non-participation, presumably might influence patient information and education negatively. The issue of participation should be raised as a means of attaining concordance and to facilitate patient participation with education specifically tailored to the individual patient's needs.

National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-3170 (URN)10.1016/j.ejcnurse.2005.06.002 (DOI)
Available from: 2006-11-14 Created: 2006-11-14 Last updated: 2020-01-29Bibliographically approved
3. Additional understanding of participation in health care: findings from a patient survey
Open this publication in new window or tab >>Additional understanding of participation in health care: findings from a patient survey
(English)Manuscript (Other academic)
National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-3171 (URN)
Available from: 2006-11-14 Created: 2006-11-14 Last updated: 2020-01-29Bibliographically approved
4. Conditions for patient participation and non-participation in health care
Open this publication in new window or tab >>Conditions for patient participation and non-participation in health care
2006 (English)In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, Vol. 13, no 5, p. 503-514Article in journal (Refereed) Published
Abstract [en]

This study explored patients' experiences of participation and non-participation in their health care. A questionnaire-based survey method was used. Content analysis showed that conditions for patient participation occurred when information was provided not by using standard procedures but based on individual needs and accompanied by explanations, when the patient was regarded as an individual, when the patient's knowledge was recognized by staff, and when the patient made decisions based on knowledge and needs, or performed self-care. Thus, to provide conditions for true patient participation, professionals need to recognize each patient's unique knowledge and respect the individual's description of his or her situation rather than just inviting the person to participate in decision making.

National Category
Social Sciences Interdisciplinary Nursing
Research subject
Nursing Science
Identifiers
urn:nbn:se:oru:diva-3172 (URN)10.1191/0969733006nej898oa (DOI)
Available from: 2006-11-14 Created: 2006-11-14 Last updated: 2020-01-29Bibliographically approved

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