Guidelines as governance: Critical reflections from a documentary analysis of guidelines to support user involvement in research

Stuhlfauth, Susanne; Knutsen, Ingrid Ruud; Foss, Ingrid Christina

doi:10.1111/nin.12378

Cited by 4 publications

(7 citation statements)

References 53 publications

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“…In four studies, no specific disease population was described [ 32 , 37 , 41 , 58 ]. In 21 studies, solely patients were involved [ 27 , 29 , 30 , 34 , 35 , 39 , 40 , 44 , 45 , 47 , 48 , 51 , 52 , 55 – 57 , 61 – 65 ], six studies involved public [ 32 , 36 , 38 , 42 , 46 , 58 ], 19 studies involved a combination of patients and public [ 15 , 24 – 26 , 28 , 31 , 41 , 43 , 49 , 50 , 53 , 54 , 59 , 60 , 66 – 70 ] and ten studies did not report whether they used patients, public or both [ 2 , 33 , 37 , 71 – 77 ].…”

Section: Resultsmentioning

confidence: 99%

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Dengsø,

Lindholm,

Herling

et al. 2023

Res Involv Engagem

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Background Over the past decades, there has been a growing international interest in user involvement in healthcare research. However, evidence on the management and impact of patient and public involvement in Nordic healthcare research remains limited. Objective The aim was to explore and delineate the current state, practice, and impact of patient and public involvement in healthcare research across different areas of healthcare and patient populations in the Nordic countries. Methods We conducted a scoping review using nine scientific databases and gray literature from 1992–2023. Sources were categorized as empirical or non-empirical. We used the Guidance for Reporting Involvement of Patients and the Public Short Form 2 checklist for reporting of patient and public involvement in healthcare research and the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews. Results A total of 56 publications were included, consisting of 39 empirical and 17 non-empirical sources. Gray literature varied among countries and institutions encompassing different types of documents. We found an increase in the number of publications on patient and public involvement in Nordic healthcare research. This was evidenced by the growing number of references and institutional initiatives intended at involving the public, indicating the increasing emphasis on patient and public involvement in Nordic healthcare research. The terminology used to describe patient and public involvement varied over time. However, there has been a gradual narrowing down of terms as the concept of PPI has become more integrated into research practices, particularly with the involvement of funding agencies. Conclusion The utilization of patient and public involvement in Nordic healthcare research has substantially increased, proliferated, and gained widespread acceptance across diverse healthcare domains. The variety of approaches challenged our scoping review in terms of systematic description and impact. Patient and public involvement was applied in one or more research stages using different methodologies and terms. International agreement on terms and definitions is needed for reliable interpretation of the use of patient and public involvement in Nordic healthcare research.

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Section: Resultsmentioning

confidence: 99%

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Dengsø,

Lindholm,

Herling

et al. 2023

Res Involv Engagem

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“…User involvement in research is in addition justified from common ethical ideals. Individuals that are affected by the disease in focus should have the opportunity to influence activities so important for them ( 14 ). User involvement ensures that those who are affected can contribute with their knowledge and lived experience.…”

Section: Patient Involvementmentioning

confidence: 99%

“…Usually, it is not meaningful for either patients or researchers that they take part in all meetings and in the day-to-day work. However, regular contact is important to secure influence, mutual interest, and interaction ( 14 ). Providing information, support and feedback to the user representatives is a key to effective engagement.…”

Section: Patient Involvementmentioning

confidence: 99%

“…MG research needs the input from patients who have experienced the various symptoms, examinations, and therapies, as well as the multiple consequences of having MG. MG patients know from experience the needs for a precise diagnosis and better treatment, for correct information and more knowledge. The linguistic shift from “patient” to “user” reflects a change in ideology ( 14 ). Our recent paper has illustrated the complex needs of MG patients ( 15 ).…”

Section: Introductionmentioning

confidence: 99%

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User Involvement in Myasthenia Gravis Research

Gilhus

Hovland²

2022

Front. Neurol.

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“…However, paternalistic ideology, in which patients are assumed to comply and play minimal and passive roles, has traditionally dominated health care (Beauchamp & Childres, 2019). This viewpoint still seems to be present in the legal text (Aasen & Dahl, 2018) of information given to patients (Aasen et al., 2020), in care and treatments (Aasen, 2015), and in guidelines for user involvement in research (Stuhlfauth et al., 2020). This study focuses on patient experiences of participation in specialised rehabilitation.…”

Section: Introductionmentioning

confidence: 99%

From open to locked doors – From dependent to independent: Patient narratives of participation in their rehabilitation processes

Aasen

Nilsen

Dahlborg

et al. 2021

Journal of Clinical Nursing

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Aims and objectives The present study aimed to explore patients' experiences of participating in their rehabilitation process in the context of specialised rehabilitation in Norway. Background The rights of patients to participate in their care and treatment is an ideology that underlines newer international and Norwegian public documents. However, there is a gap between policy statements and clinical practice, and a discrepancy between patients' and professionals' statements about patient participation in rehabilitation. Design A qualitative approach with a narrative design. Methods Eleven patients were individually interviewed to tell their stories about the rehabilitation processes. We utilised narrative analysis with a three‐dimensional space narrative structure including temporality, sociality and spatiality. This study followed the COREQ checklist. Results The analysis identified two throughout plots: ‘person‐centred culture’ and ‘time’, and three plots which constructed how the patients participate in change through the rehabilitation process: (a) dependent—‘open doors’; (b) motivation from within; and (c) independence—‘locked doors’. Conclusions Patient participation in rehabilitation was dependent on person‐centred cultures in the unit and on different aspects of time. The dialogue and the power balance between the patients and the health personnel changed as the rehabilitation progressed. Motivation for rehabilitation had to come from within patients. The paternalistic ideology did not seem to dominate the specialised rehabilitation unit in the present study. Relevance to clinical practice This study gives new insight into how patients participate in change in the rehabilitation process. This can be valuable for healthcare professionals and governments. Insight into how the lack of person‐centred focus can harm the rehabilitation process, and a deeper understanding of the meaning of time in the rehabilitation process is essential. These results may provide a stimulus for discussions on how patients might participate in their rehabilitation process.

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Guidelines as governance: Critical reflections from a documentary analysis of guidelines to support user involvement in research

Abstract: This study focuses on guidelines to regulate user involvement in research. During the last decades, user involvement has been established as an ideal within health care (Baim-Lance, Tietz, Lever,

Cited by 4 publications

References 53 publications

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice

User Involvement in Myasthenia Gravis Research

From open to locked doors – From dependent to independent: Patient narratives of participation in their rehabilitation processes

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