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 definitions, 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…
Contents
Introduction
Background
An integrative analysis of patient participation and non-participation
Legal aspects of patient participation
Perspectives on participation and non-participation
from the semantic analysis
Terms related to participation and non-participation
according to health care classifi cations
Patient participation as expressed by nurse theorists
Patient participation and non-participation as regarded
n scientifi c studies
Summary of the integrative analysi
Rationale
Aim
Method
Theoretical considerations related to data collection and analysis
Nursing and caring as used in data collection and analysis
Characteristics of the studie
Participants and setting
Data collection
Data analysis
Ethical implications
Findings
Experiences of patient participation and non-participation of patients with chronic heart failure (I)
Patient participation and non-participation as experienced by
patients and nurses, and as shown in visits at a nurse-led outpatient clinic for heart failure (II)
Patients’ common descriptions of participation (III)
Conditions for experiences of patient participation
and non-participation (IV)
Summary of the fi ndings
Author: Eldh, Ann Catrine
Source: Orebro University
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