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      Public and Patient Involvement in Doctoral Research During the COVID-19 Pandemic: Reflections on the Process, Challenges, Impact and Experiences From the Perspectives of Adults With Cerebral Palsy and the Doctoral Researcher

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          Abstract

          Introduction

          Cerebral palsy (CP) is a lifelong condition, where people may experience complications as they age. Including the views of people with CP through Public and Patient Involvement (PPI) ensures that research into the condition is relevant and meaningful in addressing their concerns. However, there is a lack of evidence on incorporating the voices of adults with CP in the doctoral research process. Therefore, this paper aims to provide an overview of how adults with CP were involved in a doctoral research process during the pandemic.

          Methods

          This paper describes the PPI process and its impact at various stages of the doctoral research process and reflects on the experiences from the perspective of the doctoral researcher and adults with CP using the INVOLVE Values and Principles framework. Five adults with CP were consulted throughout the doctoral research programme. The data for this paper is a combination of reflection notes, email exchanges, meeting minutes and informal discussions with the PPI team on their experiences of being involved in the PPI process. The content of this paper is informed by GRIPP 2 checklist.

          Results

          The doctoral researcher and adult reflections highlighted the value of collaboration and the positive impact on research at each stage of the doctoral research process. Although meetings were adapted due to the pandemic, the values of PPI were adhered to throughout the doctoral research.

          Conclusion

          Involving adults with CP positively impacted the doctoral research process. It is recommended to consider individual access needs to ensure meetings and information are accessible for disabled adults. Our reflective findings and recommendations may help other researchers who plan to involve adults with CP in doctoral research.

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          Most cited references41

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          The qualitative content analysis process.

          This paper is a description of inductive and deductive content analysis. Content analysis is a method that may be used with either qualitative or quantitative data and in an inductive or deductive way. Qualitative content analysis is commonly used in nursing studies but little has been published on the analysis process and many research books generally only provide a short description of this method. When using content analysis, the aim was to build a model to describe the phenomenon in a conceptual form. Both inductive and deductive analysis processes are represented as three main phases: preparation, organizing and reporting. The preparation phase is similar in both approaches. The concepts are derived from the data in inductive content analysis. Deductive content analysis is used when the structure of analysis is operationalized on the basis of previous knowledge. Inductive content analysis is used in cases where there are no previous studies dealing with the phenomenon or when it is fragmented. A deductive approach is useful if the general aim was to test a previous theory in a different situation or to compare categories at different time periods.
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            A report: the definition and classification of cerebral palsy April 2006.

            For a variety of reasons, the definition and the classification of cerebral palsy (CP) need to be reconsidered. Modern brain imaging techniques have shed new light on the nature of the underlying brain injury and studies on the neurobiology of and pathology associated with brain development have further explored etiologic mechanisms. It is now recognized that assessing the extent of activity restriction is part of CP evaluation and that people without activity restriction should not be included in the CP rubric. Also, previous definitions have not given sufficient prominence to the non-motor neurodevelopmental disabilities of performance and behaviour that commonly accompany CP, nor to the progression of musculoskeletal difficulties that often occurs with advancing age. In order to explore this information, pertinent material was reviewed on July 11-13, 2004 at an international workshop in Bethesda, MD (USA) organized by an Executive Committee and participated in by selected leaders in the preclinical and clinical sciences. At the workshop, it was agreed that the concept 'cerebral palsy' should be retained. Suggestions were made about the content of a revised definition and classification of CP that would meet the needs of clinicians, investigators, health officials, families and the public and would provide a common language for improved communication. Panels organized by the Executive Committee used this information and additional comments from the international community to generate a report on the Definition and Classification of Cerebral Palsy, April 2006. The Executive Committee presents this report with the intent of providing a common conceptualization of CP for use by a broad international audience.
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              GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

              GRIPP2 (short form and long form) is the first international guidance for reporting of patient and public involvement in health and social care research. This paper describes the development of the GRIPP2 reporting checklists, which aim to improve the quality, transparency, and consistency of the international patient and public involvement (PPI) evidence base, to ensure that PPI practice is based on the best evidence
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                Author and article information

                Contributors
                Journal
                Front Rehabil Sci
                Front Rehabil Sci
                Front. Rehabilit. Sci.
                Frontiers in Rehabilitation Sciences
                Frontiers Media S.A.
                2673-6861
                2673-6861
                03 June 2022
                2022
                03 June 2022
                : 3
                : 874012
                Affiliations
                [1] 1Department of Public Health and Epidemiology, RCSI University of Medicine and Health Sciences , Dublin, Ireland
                [2] 2Public and Patient Involvement Contributor , Ireland
                [3] 3College of Health, Medicine and Life Sciences, Brunel University London , Uxbridge, United Kingdom
                [4] 4School of Nursing and Midwifery, Queen's University Belfast , Belfast, United Kingdom
                Author notes

                Edited by: Linda Li, University of British Columbia, Canada

                Reviewed by: Jenny Leese, University of Ottawa, Canada; Simon Décary, Université de Sherbrooke, Canada

                *Correspondence: Manjula Manikandan manjulamanikandan@ 123456rcsi.com

                This article was submitted to Disability, Rehabilitation, and Inclusion, a section of the journal Frontiers in Rehabilitation Sciences

                Article
                10.3389/fresc.2022.874012
                9397843
                36188919
                dbcafdc3-0c4a-47e4-9755-3c90973256ba
                Copyright © 2022 Manikandan, Foley, Gough, Harrington, Wall, Weldon, Ryan, Kerr, Walsh and Fortune.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 11 February 2022
                : 06 May 2022
                Page count
                Figures: 0, Tables: 3, Equations: 0, References: 40, Pages: 11, Words: 8525
                Funding
                Funded by: Royal College of Surgeons in Ireland, doi 10.13039/100012921;
                Categories
                Rehabilitation Sciences
                Perspective

                public and patient involvement (ppi),covid-19,adults,cerebral palsy,doctoral research,perspective

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