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A comparison of the concept of patient participation and patients’ descriptions as related to health care definitions
Department of Neurobiology, Care Sciences and Society, Karolinska Institutet ; School of Health and Medical Sciences, Örebro University, Örebro, Sweden.ORCID iD: 0000-0002-7737-169X
Sahlgrenska Academy at Göteborg University, Institute of Health and Care Sciences, Göteborg, Sweden.
School of Health and Medical Sciences, Örebro University, Örebro, Sweden.
2010 (English)In: International Journal of Nursing Terminologies and Classifications, ISSN 2047-3087, E-ISSN 2047-3095, Vol. 21, no 1, p. 21-32Article in journal (Refereed) Published
Abstract [en]

PURPOSE. To depict what patients describe as patient participation and whether descriptions of patient participation are affected by gender, age, healthcare contact, and duration of disease. DATA SOURCES. Current patients (n= 362) responded to a questionnaire on participation. DATA SYNTHESIS. Patients' descriptions focused on having knowledge, rather than being informed, and on interacting with health professionals, rather than merely partaking in decision making. CONCLUSIONS. Patients' descriptions of participation correspond with the International Classification of Functioning, Disability and Health's definition, which includes "being involved in a life situation." Healthcare legislation and professionals employ a narrower concept of patient participation as defined by, e.g., Medical Subject Headings. PRACTICE IMPLICATIONS. Findings suggest that health professionals need to embrace what patients describe as participation.

Place, publisher, year, edition, pages
John Wiley & Sons, 2010. Vol. 21, no 1, p. 21-32
Keywords [en]
Concept analysis; content analysis; patient participation; questionnaire
National Category
Nursing
Identifiers
URN: urn:nbn:se:du-14202DOI: 10.1111/j.1744-618X.2009.01141.xOAI: oai:DiVA.org:du-14202DiVA, id: diva2:723047
Note

Article originally included in thesis in manuscript form, with the title "Additional understanding of participation in health care: findings from a patient survey".

Available from: 2014-06-10 Created: 2014-06-10 Last updated: 2017-12-05Bibliographically approved
In thesis
1. Patient participation: what it is and what it is not
Open this publication in new window or tab >>Patient participation: what it is and what it is not
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
patient participation, non-participation, phenomenological hermeneutics, communication
National Category
Social Sciences Interdisciplinary Nursing
Identifiers
urn:nbn:se:du-15194 (URN)91-7668-503-9 (ISBN)
Public defence
2006-12-06, Aulan, Örebro universitet, Örebro, 13:00 (English)
Opponent
Supervisors
Available from: 2014-09-08 Created: 2014-09-08 Last updated: 2018-01-11Bibliographically approved

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Eldh, Ann Catrine

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