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      Patient and Public Involvement and Engagement in a doctoral research project exploring self‐harm in older adults

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          Abstract

          Background

          The contribution of involving patients and public in health research is widely reported, particularly within mental health research. Less is written about such contributions to doctoral research. The research focus of this doctoral research, self‐harm in older adults, was put forward by a Patient Public Involvement Engagement (PPIE) group, who contributed to its development.

          Aims

          Critically reflect on the process, potential impact and identify challenges and opportunities in involving robust PPIE in a doctoral study.

          Methods

          Three PPIE members contributed to a systematic review (SR) and a qualitative study through a series of four workshops to meet the aims of the study. PPIE contributed to developing the SR review questions, protocol, data analysis and dissemination of findings. For the qualitative study, they helped develop research questions, protocol, public‐facing documentation, recruitment strategies and data analysis. Involvement followed the GRIPP2‐SF reporting checklist.

          Results

          PPIE enhanced methodological rigour, data analysis, interpretation and dissemination of findings. Challenges included lack of ethical guidance, time‐related pressures and ensuring support for PPIE members. These were successfully managed through ongoing dialogue and regular communication.

          Conclusions

          PPIE can enhance the quality and depth of doctoral research, as lived experiences shared by PPIE members add to research's components. Exposing early‐career researchers to PPIE can build research cultures sensitive to PPIE's potential contribution and develop the expertise needed to avoid tokenistic involvement. Capturing lay perspectives is essential in mental health research to ensure research findings are accessible and that findings inform clinical practice. However, clear guidance on the ethical dimensions to PPIE is needed.

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          Most cited references16

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          GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research

          Background While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers is often inconsistent, limiting our understanding of how it works, in what context, for whom, and why. Objective To develop international consensus on the key items to report to enhance the quality, transparency, and consistency of the PPI evidence base. To collaboratively involve patients as research partners at all stages in the development of GRIPP2. Methods The EQUATOR method for developing reporting guidelines was used. The original GRIPP (Guidance for Reporting Involvement of Patients and the Public) checklist was revised, based on updated systematic review evidence. A three round Delphi survey was used to develop consensus on items to be included in the guideline. A subsequent face-to-face meeting produced agreement on items not reaching consensus during the Delphi process. Results One hundred forty-three participants agreed to participate in round one, with an 86% (123/143) response for round two and a 78% (112/143) response for round three. The Delphi survey identified the need for long form (LF) and short form (SF) versions. GRIPP2-LF includes 34 items on aims, definitions, concepts and theory, methods, stages and nature of involvement, context, capture or measurement of impact, outcomes, economic assessment, and reflections and is suitable for studies where the main focus is PPI. GRIPP2-SF includes five items on aims, methods, results, outcomes, and critical perspective and is suitable for studies where PPI is a secondary focus. Conclusions GRIPP2-LF and GRIPP2-SF represent the first international evidence based, consensus informed guidance for reporting patient and public involvement in research. Both versions of GRIPP2 aim to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence. In order to encourage its wide dissemination this article is freely accessible on The BMJ and Research Involvement and Engagement journal websites. Electronic supplementary material The online version of this article (doi:10.1186/s40900-017-0062-2) contains supplementary material, which is available to authorized users.
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            Non-suicidal self-injury v. attempted suicide: new diagnosis or false dichotomy?

            Non-suicidal self-injury (NSSI) is a term that is becoming popular especially in North America and it has been proposed as a new diagnosis in DSM-5. In this paper we consider what self-harm research can tell us about the concept of NSSI and examine the potential pitfalls of introducing NSSI into clinical practice.
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              Postnatal depression in Southern Brazil: prevalence and its demographic and socioeconomic determinants

              Background Studies investigating the prevalence of postnatal depression (PND) show rates ranging from 5% to 36.7%. The investigation of age, race, educational levels, religion and income as risk factors for PND has yielded conflicting results. The aim of this study is to investigate the prevalence of PND in women residing in Southern Brazil and the associated risk factors. Methods This is population-based cross-sectional study of women residing in Porto Alegre who delivered in June 2001. A sample of 271 participants were selected from the Record of Living Newborn Infants of the State Health Department (the official Brazilian database and stores the name and address of all women who give birth to living newborn infants) using a process based on pseudo-random numbers which choose a random sample from 2.000 records. Once the addresses were identified, the women were visited at their place of residence (home, hotel, boarding house and prison), with the interviews taking place between the 6th and the 8th week after delivery. The association between the risk factors and PND was investigated through bivariate analysis using Pearson's chi-square test. Student's t-test was used to analyze the continuous variables. To identify independent risk factors, multivariate analysis was performed using hierarchical levels with a predefined model that took into account the time relationship between PND and the risk factors. Cox's regression was used to calculate the prevalence ratios. Results The PND prevalence rate found was 20.7% (CI 95% 15.7 – 25.7). After adjusting for confounding variables, per capita income was found to have a significant association with PND. Conclusion The prevalence of PND is higher than the figures found in most developed countries and similar to the figures found in developing countries. Differences in PND by regions or countries can be partially explained by the effect of income on the mediation of risk factors. In low income populations, women should be routinely evaluated for postnatal depression, and those with no partner or spouse are likely to require further care from health services and should be given the benefit of mental health prevention programs.
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                Author and article information

                Contributors
                Role: PhD studentm.i.troya.bermeo@keele.ac.uk
                Role: Professor
                Role: Research Associate
                Role: Senior Research Fellow
                Role: Senior Lecturer
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                26 May 2019
                August 2019
                : 22
                : 4 ( doiID: 10.1111/hex.v22.4 )
                : 617-631
                Affiliations
                [ 1 ] Research Institute for Primary Care and Health Sciences Keele University Keele UK
                [ 2 ] Midlands Partnership Foundation Trust Stafford UK
                [ 3 ] West Midlands Collaboration for Leadership in Applied Health Research and Care Coventry UK
                [ 4 ] Family Medicine and Primary Care Lee Kong Chian School of Medicine, Nanyang Technical University Singapore Singapore
                [ 5 ] School of Medicine Keele University Keele UK
                Author notes
                [*] [* ] Correspondence

                M. Isabela Troya, Research Institute for Primary Care and Health Sciences, Keele University, David Weatherall Building, Staffordshire, ST5 5BG, UK.

                Email: m.i.troya.bermeo@ 123456keele.ac.uk

                Author information
                https://orcid.org/0000-0003-0474-3832
                https://orcid.org/0000-0002-9722-9981
                https://orcid.org/0000-0002-5064-6446
                https://orcid.org/0000-0002-8557-6222
                https://orcid.org/0000-0002-5752-3270
                Article
                HEX12917
                10.1111/hex.12917
                6737763
                31131529
                28850ed3-6f5c-48f9-9367-1efeb170adc0
                © 2019 The Authors Health Expectations Published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 26 October 2018
                : 23 March 2019
                : 05 May 2019
                Page count
                Figures: 1, Tables: 2, Pages: 15, Words: 8970
                Funding
                Funded by: ACORN Studentship, Keele University
                Funded by: Allan and Nesta Ferguson Charitable Trust
                Funded by: West Midlands Collaboration for Leadership in Applied Health Research and Care
                Funded by: Santander Bank
                Categories
                Original Research Paper
                Original Research Papers
                Custom metadata
                2.0
                hex12917
                August 2019
                Converter:WILEY_ML3GV2_TO_NLMPMC version:5.6.9 mode:remove_FC converted:11.09.2019

                Health & Social care
                aged,patient participation,qualitative,self‐harm,self‐injurious behavior,systematic review

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