A Comparison of the Concept of Patient Participation and Patients' Descriptions as Related to Healthcare Definitions

Eldh, Ann Catrine; Ekman, Inger; Ehnfors, Margareta

doi:10.1111/j.1744-618x.2009.01141.x

Cited by 115 publications

(187 citation statements)

References 31 publications

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“…for high levels of patient participation it has been shown to be important for patients to acquire appropriate insights and knowledge, not only information, and to have the opportunity to interact with health professionals. This is in line with the ICF's definition of participation (24). however, little is known about patients' perspective on participation in multimodal pain rehabilitation.…”

Section: Introductionsupporting

confidence: 57%

Being in an exchange process: Experiences of patient participation in multimodal pain rehabilitation

2013

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Objective: To explore primary healthcare patients' experiences of patient participation in multimodal pain rehabilitation. Patients and methods: A total of 17 patients who had completed multimodal rehabilitation for persistent pain were interviewed. The interviews were analysed using qualitative content analysis. Results: One theme, Being in an exchange process, and 4 categories emerged. The theme depicted patient participation as a continuous exchange of emotions, thoughts and knowledge. The category Fruitful encounters represented the basic prerequisites for patient participation through dialogue and platforms to meet. Patients' emotional and cognitive resources and restrictions, as well as knowledge gaps, were conditions influencing patient participation in the category Inequality in co-operation. Mutual trust and respect were crucial conditions in patient's personal relationships with the health professionals, forming the category Confidenceinspiring alliance. In the category Competent health professionals, the health professionals' expertise, empathy and personal qualities, were emphasized to favour patient participation. Conclusion: Patient participation can be understood as complex and individualized. A confidence-inspiring alliance enables a trusting relationship to be formed between patients and health professionals. Patients emphasized that health professionals need to play an active role in building common ground in the interaction. Understanding each patient's needs in the participation process may favour patient participation.

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Section: Introductionsupporting

confidence: 57%

Being in an exchange process: Experiences of patient participation in multimodal pain rehabilitation

2013

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“…Better HF knowledge was significantly associated with the aspects of participation, higher ratings for received information and fulfilled needs (I).This result is in concordance with previous qualitative findings that have described the importance of knowledge in relation to participation , Eldh et al 2010, and with the patients' descriptions (II). This association between knowledge and aspects of participation could also be of interest for HF self-care.…”

Section: Factors Associated With Patient Participationsupporting

confidence: 82%

“…The concept participation is frequently used in the health care context, and in legal texts it is often referred to as taking part in decisions and receiving information (Eldh et al 2010). A broader definition is offered by The International Classification of Functioning, Disability and Health (ICF), that defines participation as "involvement in a life situation".…”

Section: The Concept Participationmentioning

confidence: 99%

“…Participation means to achieve knowledge, including good conditions for communication , Eldh et al 2010. Furthermore, being treated with respect is also described as participation (Bastiaens et al 2007, Eldh et al 2010, Larsson et al 2011b. Patients have referred to decision-making in relation to participation, but their preferences for involvement in decisions vary (Guadgnoli & Ward 1998, Saino et al 2001, Say et al 2006, Bastiaens et al 2007, Thompson 2007, Ekdahl et al 2010.…”

Section: Patients' View Of Participationmentioning

confidence: 99%

“…Participation includes interaction with health care providers (Bastiaens et al 2007, Eldh et al 2010, exchange of information (Eldh et al 2006a, Bastiaens et al 2007, Höglund et al 2010, Larsson et al 2011b, and being able to understand the information (Eldh et al 2010). Participation means to achieve knowledge, including good conditions for communication , Eldh et al 2010.…”

Section: Patients' View Of Participationmentioning

confidence: 99%

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Participation in heart failure home-care : Patients’ and partners’ perspectives

Näsström¹

2015

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Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care. Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners. Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together. Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV). Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. As...

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Experiences of living with symptomatic atrial fibrillation

et al. 2022

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Atrial fibrillation (AF) is the most common arrhythmia. In 2010, more than 33.5 million people worldwide were estimated to be affected and the disease continues to increase in both prevalence and incidence (Chugh et al., 2014). Increased prevalence is due to both improved awareness of AF resulting in systematic diagnosis of AF being made earlier (Kirchhof, Breithardt, et al., 2016) and increases in the life expectancy of the general population (Hindricks et al., 2020).Age is a major risk factor for AF, along with other factors that can be modified by lifestyle changes, namely high blood pressure, high cholesterol levels, diabetes, obesity and obstructive sleep apnoea syndrome (Hindricks et al., 2020). | BACKG ROU N DThe risk of AF for people of European descent and over the age of 55 is 1 in 3 (Hindricks et al., 2020). In Sweden, about 330,000 persons live with the diagnosis of AF (Riksförbundet HjärtLung, 2021).Since many individuals have asymptomatic AF and/or are undiagnosed, prevalence, in general, is assumed to be significantly higher (Kirchhof, Benussi, et al., 2016). Symptoms for those affected vary; some have no symptoms at all while others experience severe symptoms with a large symptom burden. Common symptoms are palpitations, shortness of breath and fatigue (Hindricks et al., 2020).Research shows that AF negatively affects health-related quality of life (HRQoL), often in relation to the severity of symptoms (Freeman

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A Comparison of the Concept of Patient Participation and Patients' Descriptions as Related to Healthcare Definitions

Cited by 115 publications

References 31 publications

Being in an exchange process: Experiences of patient participation in multimodal pain rehabilitation

Being in an exchange process: Experiences of patient participation in multimodal pain rehabilitation

Participation in heart failure home-care : Patients’ and partners’ perspectives

Experiences of living with symptomatic atrial fibrillation

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