Background: In this study, agents working in positions of authority within health sector organisations shared their perspectives concerning both the involvement of experts by experience with intellectual disabilities within their own organisations and their recommendations as to how best to involve experts by experience in policy and practice.
Method: Using purposive sampling, eight agents were selected for semi-structured interviews. The interviews were analysed using thematic analysis.
Results: The results indicated the importance of involving experts by experience. However, they also highlighted several barriers such as a lack of emphasis on genuine attention, insufficient visibility and recognition of expertise, and a lack of support for sustainable inclusion.
Conclusions: Agents are willing to involve experts by experience in health sector organisations, but practical challenges hindered them from actually doing so. This study emphasises the importance to find solutions for better inclusion in policies.
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http://dx.doi.org/10.3109/13668250.2023.2275943 | DOI Listing |
Mol Genet Metab Rep
March 2025
Hayward Genetics Center, Dept of Pediatrics, Tulane University Medical School, New Orleans, LA, USA.
Objective: To provide insights and strategies for pegvaliase management in challenging cases with phenylketonuria (PKU) based on the first 5 years of experience with pegvaliase in real-world clinical practice.
Methods: Twelve PKU experts gathered during a one-day, in-person meeting to discuss clinical cases illustrating important lessons from their experiences treating patients with pegvaliase in real-world clinical practice. Challenges with pegvaliase experienced prior to and during treatment and corresponding strategies to overcome them were discussed.
Unlabelled: The increased rate of anterior cruciate ligament (ACL) tears has led to a greater number of revisions. Revision surgery can be performed in one or two stages. Single-stage revision ACL reconstruction (ssRACLR) may be performed when prior tunnels can be re-used or bypassed whereas a two-stage procedure is indicated when bone grafting of dilated tunnels prior to revision is necessary.
View Article and Find Full Text PDFPostgrad Med J
January 2025
Faculty of Law, University of Abuja, PMB 117, Gwagwalada, Abuja 902101, Nigeria.
Engaging in research during medical training is crucial for fostering critical thinking, enhancing clinical skills, and deepening understanding of medical science. Despite its importance, the shortage of physician-scientists lingers with many trainees and junior doctors encountering challenges navigating the research process. Drawing on current literature, this article provides a comprehensive roadmap, categorising 12 actionable strategies into five themes, to help medical trainees overcome common obstacles and optimise their research experience.
View Article and Find Full Text PDFJ Intellect Dev Disabil
September 2024
Tranzo, Tilburg School of Social and Behavorial Sciences, Tilburg University, Tilburg, the Netherlands.
Background: In this study, agents working in positions of authority within health sector organisations shared their perspectives concerning both the involvement of experts by experience with intellectual disabilities within their own organisations and their recommendations as to how best to involve experts by experience in policy and practice.
Method: Using purposive sampling, eight agents were selected for semi-structured interviews. The interviews were analysed using thematic analysis.
J Intellect Dev Disabil
September 2024
Department of Clinical Child and Family Studies, Vrije Universiteit Amsterdam, Amsterdam, Netherlands.
Background: Intellectual disability organisations in the Netherlands are seeking to improve clients' quality of care by implementing methods that reduce involuntary care. This study described insights gained from sharing tacit and experiential implementation knowledge in Communities of Practice (CoP).
Method: In a participatory research, managers, policymakers, experts-by-experience, support staff, and researchers participated in two CoP.
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