Original title: Patient och medaktör. Studier av patientdelaktighet och hur sådan stimuleras och hindras. Title in English: Patient and Co-actor. Studies of patient participation and how this is stimulated and hindered. Language: Swedish with summary in English. Keywords: behaviour, Co-actor, Critical Incident Technique, barriers, focus group, Grounded Theory, nurse-patient relationships, nursing, patient participation. ISBN: 978-91-628-7410-0 The overall aim of this thesis was to contribute to the development of knowledge of what could strengthen patients’ participation in their own care by clarifying the phenomenon patient participation and describe how it is stimulated or hindered, respectively. Data collection were obtained from focus groups (13); with patients (26) and with nurses (31) and interviews; with patients (17) within inpatient somatic care at five hospitals in West Sweden. This thesis includes four papers. Grounded Theory has been described and used to explore the meaning of patient participation in nursing care from a patient point of view. “Insight through consideration” was generated from four interrelated categories: Obliging atmosphere, Emotional response, Concordance and Rights. Grounded Theory has also been used to clarify Registered Nurses’ understanding of patient participation in nursing care. Four properties emerged: Interpersonal procedure, Therapeutic approach, Focus on resources and Opportunities for influence. A thematic content analysis has been described and used to explore barriers for patient participation in nursing care with a special focus on adult patients identified as: Facing own inability, Meeting ignorance, Meeting a paternalistic attitude and Sensing structural barriers. A qualitative approach, using the Critical Incident Technique has been described and used to identify incidents and nurses’ behaviours that influence patients’ participation in nursing care based on patients’ experiences from inpatient somatic care, identified as: Regarded as a person, Engaged through information, Acknowledged as competent, Abandoned without backup, Belittled verbally, Ignored without influence. This thesis has clarified the fact that patient participation is something that needs to be worked on and further developed in health and medical care. This requires nurses as well as leaders at all levels to become aware of the rights and expectations patients have. To achieve optimum patient participation, patients need to be encouraged and supported by knowledgeable and dedicated nurses in order to increase their own control. In order to improve patient participation, traditional structures as well as attitudes of the caregivers need to be questioned and replaced.

Registered nurses at the bedside are accountable for and oversee completion of patient care as well as directly leading and managing the provision of safe patient care. These nurses have an informal leadership role that is not associated with any given position. Leadership is a complex and multifaceted concept and its meaning is unclear, especially in the staff nurse context. The aim was to describe registered nurses’ perceptions of what it entails to be the leader at the bedside in inpatient physical care. A phenomenographic approach was employed. Interviews were performed with Swedish registered nurses (). Five descriptive categories were identified: demonstrating clinical knowledge, establishing a good atmosphere of collaboration, consciously structuring the work in order to ensure patients’ best possible nursing care, customized presence in the practical work with patients according to predetermined prerequisites, and monitoring coworkers’ professional practice. Registered nurses informal role as leader necessitates a social process of deliberate effort to attain and maintain leader status and authority. Participants used deliberate communicative approaches and interactive procedures. Leader principles grounded in the core values of the nursing profession that ensure nursing values and person-centered attributes were a key aspect.

Background: In many Western countries as in Sweden, patients have legal right to participate in own care individually adjusted to each patient's wishes and abilities. There are still few empirical studies of patients' perceptions of barriers for participation. Accordingly, there is a need to identify what may prevent patients from playing an active role in own nursing care. Such knowledge is highly valuable for the nursing profession when it comes to implementation of individual patient participation. Aim and objective: To explore barriers for patient participation in nursing care with a special focus on adult patients with experience of inpatient physical care. Methodological design and justification: Data were collected through 6 focus groups with 26 Swedish informants recruited from physical inpatient care as well as discharged patients from such a setting. A content analysis with qualitative approach of the tape-recorded interview material was made. Ethical issues and approval: The ethics of scientific work was adhered to. Each study participant gave informed consent after verbal and written information. The Ethics Committee of Göteborg University approved the study. Results: The barriers for patient participation were identified as four categories: Facing own inability, meeting lack of empathy, meeting a paternalistic attitude and sensing structural barriers, and their 10 underlying subcategories. Conclusions: Our study contributes knowledge and understanding of patients' experiences ofbarriers for participation. The findings point to remaining structures and nurse attitudes that are of disadvantage for patients' participation. The findings may increase the understanding of patient participation and may serve as an incentive in practice and nursing education to meet and eliminate these barriers, in quality assurance of care, work organization and further research. © 2011 The Authors. Scandinavian Journal of Caring Sciences © 2011 Nordic College of Caring Science

Patient participation is an important basis for nursing care and medical treatment and is a legal right in many Western countries. Studies have established that patients consider participation to be both obvious and important, but there are also findings showing the opposite and patients often prefer a passive recipient role. Knowledge of what may influence patients' participation is thus of great importance. The aim was to identify incidents and nurses' behaviours that influence patients' participation in nursing care based on patients' experiences from inpatient somatic care. The Critical Incident Technique (CIT) was employed. Interviews were performed with patients (), recruited from somatic inpatient care at an internal medical clinic in West Sweden. This study provided a picture of incidents, nurses' behaviours that stimulate or inhibit patients' participation, and patient reactions on nurses' behaviours. Incidents took place during medical ward round, nursing ward round, information session, nursing documentation, drug administration, and meal.

AIMS AND OBJECTIVES: The aim of this study was to clarify Registered Nurses' understanding of patient participation in nursing care. Objectives were to investigate ward nurses' interpretation of the elements of patient participation and its implementation. BACKGROUND: One goal of health care is patient participation. Registered Nurses must encourage the participation of their patients in nursing care situations. A right for patients to make their own informed choices is laid down in Swedish laws and national and local directives. The concept of patient participation can be interpreted differently and is thus difficult to implement and evaluate. Current nursing literature provides little clarity of the elements and processes of patient participation and conceptual definitions differ. DESIGN AND METHODS: A qualitative approach was applied and the Grounded Theory method used. Thirty-one Registered Swedish Nurses described the meaning of patient participation and its implementation in nursing care. Seven focus group interviews with nurses providing inpatient somatic care were carried out in five hospitals in west Sweden. RESULTS: Four properties, describing nurses' approaches and procedures, constitute patient participation. The properties are: interpersonal procedure, therapeutic approach, focus on resources, opportunities for influence. These properties were considered crucial for patient participation in a nursing care context. CONCLUSIONS AND RELEVANCE TO CLINICAL PRACTICE: The results clarify the concept of patient participation from a nursing perspective. A comprehensive description of important factors for patient participation could be made on the basis of nursing experience. This comprehensive description can be used in nursing care practice and its evaluation. The developed categories can be used in nursing care documentation of how patient participation is realized.

The study’s rationale: Patients’ influence in health care through participation, freedom of choice and information, is laid down in laws, national and local directives. In nursing care situations, the degree to which a patient participates depends on the nursing staff. Accordingly, hindrances for patient’s participation during nursing care is an important question for the nursing profession. Aims and objectives: The aim was to focus on Swedish Registered Nurses opinion of hindrances for patient participation in nursing care and to uncover the informants’ perspectives in depth. Methodological design and justification: The study was limited to inpatient somatic care and has a qualitative approach. Data were collected through seven focus group interviews with 31 Registered Nurses from five hospitals. An analysis of the tape-recorded interview material was made, combining elements of content analysis with aspects of the Grounded Theory approach. Ethical issues and approval: The ethics of scientific work was followed. The participants gave informed consent. Verbal and written information was given as a guarantee that all information would be treated confidentially outside the focus group. Formal approval by ethical committee was not required according to national and local directives. Results: Hindrance for patient participation in nursing care comprised three themes: Competence, Influence of significant others and Organization and work environment, and their seven underlying subthemes. Conclusions: The study clarified factors, which individually or combined may be hindrance for patient participation in nursing practice. Professional nurses must be able to find a balance for their patients’ participation in nursing care activities through identification and coping with the hindrances. The three themes and seven subthemes here identified, can be used in patient care and its’ evaluation, like also quality assurance of care and work organization and in nursing education. For further development replication studies are needed, like additional studies of patients and significant others. © 2005 Nordic College of Caring Sciences.

The concept of patient participation has an array of interpretations and lacks clarity. The purpose of this article is to explore the concept of patient participation within the context of nursing practice. The method described by Walker and Avant (1995) is used. The critical attributes of the concept are identified. Formation of model, borderline, and contrary cases exemplifies key characteristics. Antecedents, consequences, and empirical referents presented allow for further refinement of the key attributes defining the concept. Patient participation in nursing practice can be defined as an established relationship between nurse and patient, a surrendering of some power or control by the nurse, shared information and knowledge, and active engagement together in intellectual and/or physical activities.