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Library›Open textbooks›An online supported self-management toolkit for relatives of people with psychosis or bipolar experiences: the IMPART multiple case study›Acknowledgements

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An online supported self-management toolkit for relatives of people with psychosis or bipolar experiences: the IMPART multiple case study · Acknowledgements

Acknowledgements

CC BY 4.0 · NIHR Journals Library · approximately 7 min read

This study is dedicated to Naomi Fisher who very sadly died during the publishing of the final report. She was our warm, funny, generous and incredibly clever colleague and friend who we will remember always. She played an essential role in this study and spent her life trying to improve support for people with mental health difficulties.

The IMPART study was supported by the North West Coast Clinical Research Network, including research support costs. We thank all of the staff and relatives at the six participating NHS trusts and the members of the Study Steering Committee chaired by David Kingdon, Professor of Mental Health Care Delivery within Medicine at the University of Southampton. We also thank Anthony Greenwood, Claire Hilton, Laura Wainwright, Sarah Tambo, Charlotte Rothwell and Samuel Williams for support with data collection or administrative tasks at Lancaster University, and Shashya Wijesinghe and Francesca Bentivegna for similar services at UCL.

We would like to acknowledge the extensive time and effort of all of the staff and relatives who took part in the IMPART study. This work would not have been possible without their generous co-operation. We would like to acknowledge further support for the study from Laura Wainwright and Claire Hilton who conducted the interviews with relatives and REACT supporters (respectively) in the REACT feasibility trial, which was used for the secondary analysis in phase 1. We would like to thank Nic Barnard for helping to pull together the report and make sure it all made sense (hopefully). All errors and confusion are the responsibility of the authors.

We have provided extensive quotations from data collected during this study from all six trusts. These have been carefully edited to ensure that all quotations are anonymous. We have also attempted to hide the identity of individual NHS trusts by allocating bird habitat names. Further data are not openly available because we would not be able to share this without jeopardising anonymity. Data may be available on request.

Contributions of authors

Fiona Lobban (https://orcid.org/0000-0001-6594-4350) (Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) was the chief investigator.

Duncan Appelbe (https://orcid.org/0000-0003-1493-0391) (CTRC, Department of Biostatistics, University of Liverpool) contributed IT design, management and support for the online collection of data from the study participants.

Victoria Appleton (https://orcid.org/0000-0002-7214-0702) (Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) was the lead research associate in the North of England sites in year 1.

Golnar Aref-Adib (https://orcid.org/0000-0003-2220-5317) (Division of Psychiatry, UCL) was author of the systematic review on factors affecting implementation of DHIs for people with psychosis or bipolar disorder and/or their family and friends.

Johanna Barraclough (https://orcid.org/0000-0003-1189-5340) (Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, and the Department of Clinical Psychology, Lancaster University) was a trainee clinical psychologist researcher on the study with a focus on relatives’ data collection and analysis.

Julie Billsborough (https://orcid.org/0000-0002-4801-4853) (McPin Foundation) contributed data analysis, co-ran a SRG meeting, gave input into data days, contributed to the report and provided her perspective as a carer.

Naomi R Fisher (https://orcid.org/0000-0002-4851-7207) (Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) led on design of the implementation plans.

Sheena Foster (https://orcid.org/0000-0002-2052-9476) (McPin Foundation) contributed data analysis, co-ran a SRG meeting, gave input into data days, contributed to the report and provided her perspective as a carer.

Bethany Gill (https://orcid.org/0000-0002-8104-3955) (Research Associate, Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) was the North of England site lead research associate in the final year of the project and contributed data collection management and analysis.

David Glentworth was an IMPART lead at a participating trust.

Chris Harrop (https://orcid.org/0000-0002-0644-8127) was an IMPART lead at a participating trust.

Sonia Johnson (https://orcid.org/0000-0002-2219-1384) (Division of Psychiatry, UCL) was the South of England sites lead.

Steven H Jones (https://orcid.org/0000-0002-8801-5113) (Spectrum Centre for Mental Health Research; Division of Health Research; Faculty of Health and Medicine; Lancaster University) was a North of England site lead.

Tibor Z Kovacs (https://orcid.org/0000-0002-1572-4066) was a site PI and IMPART lead at a participating trust.

Elizabeth Lewis (https://orcid.org/0000-0001-8840-4621) (Research Assistant, Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) was the interim North of England sites lead research associate.

Barbara Mezes (https://orcid.org/0000-0002-0799-2423) (Research Associate, Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) wrote the methods and results sections of the quantitative study. She contributed to the conception and design of the quantitative components of the IMPART study and contributed to data collection, checking and analysis, production of graphs and tables and interpretation of results.

Charlotte Morton (https://orcid.org/0000-0003-3848-420X) (Research Assistant, Division of Psychiatry, UCL) was the lead research associate for the South of England sites.

Elizabeth Murray (https://orcid.org/0000-0002-8932-3695) (Research Department of Primary Care and Population Health, UCL) contributed to setting the research questions, designing the research methods and protocol, analysing and interpreting the data and writing the final report.

Puffin O’Hanlon (https://orcid.org/0000-0003-3515-1661) (Research Assistant, Division of Psychiatry, UCL) contributed to study design, protocol writing, data collection and qualitative data analysis.

Vanessa Pinfold (https://orcid.org/0000-0003-3007-8805) (McPin Foundation) was the PPI lead.

Jo Rycroft-Malone (https://orcid.org/0000-0003-3858-5625) (School of Healthcare Sciences, Bangor University) was a co-applicant, advised on the approach to case study data collection and analysis, and commented on drafts of the final report.

Ronald Siddle (https://orcid.org/0000-0002-2303-5148) was a grant holder, REACT lead and REACT supporter at a participating trust.

Jo Smith (https://orcid.org/0000-0002-0277-1680) (School of Allied Health and Community, University of Worcester) was an EIP expert clinical advisor.

Chris J Sutton (https://orcid.org/0000-0002-6406-1318) (Centre for Biostatistics, Division of Population Health, Health Services Research & Primary Care, School of Health Sciences, Faculty of Biology, Medicine and Health, The University of Manchester) gave input to the design and management of the project, support with statistical analysis and reporting of quantitative data, and input to the synthesis and interpretation of study results.

Pietro Viglienghi (https://orcid.org/0000-0002-0699-6596) took part in the pilot and was the IMPART lead at a participating trust.

Andrew Walker (https://orcid.org/0000-0001-6486-6135) (Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) is a digital technologist who was involved in the implementation of the REACT toolkit and the iterative development of the IMPART study. He also contributed data extraction, management and analysis.

Catherine Wintermeyer (https://orcid.org/0000-0002-9164-1334) (Spectrum Centre for Mental Health Research, Division of Health Research, Faculty of Health and Medicine, Lancaster University) was involved in the initial planning of the IMPART project and analysis of the REACT feasibility data.

Publications

Lobban F, Appleton V, Appelbe D, Barraclough J, Bowland J, Fisher NR, et al. IMPlementation of A Relatives’ Toolkit (IMPART study): an iterative case study to identify key factors impacting on the implementation of a web-based supported self-management intervention for relatives of people with psychosis or bipolar experiences in a National Health Service: a study protocol. Implement Sci 2017;12:152.

Aref-Adib G, McCloud T, Ross J, O’Hanlon P, Appleton V, Rowe S, et al. Factors affecting implementation of digital health interventions for people with psychosis or bipolar disorder, and their family and friends: a systematic review. Lancet Psychiatry 2019;6:257–66.

Lobban F, Appelbe D, Appleton V, Billsborough J, Fisher NR, Foster S, et al. IMPlementation of An online Relatives’ Toolkit for psychosis or bipolar (IMPART study): iterative multiple case study to identify key factors impacting on staff uptake and use. BMC Health Serv Res 2020;20:1–3.

Data-sharing statement

The PI and sponsor will ensure that all data are stored in formats that comply with widely accepted standards, in line with the recommendations of the UK Data Service (www.ukdataservice.ac.uk; accessed 6 December 2019) for data sharing, reuse and preservation. Standard protocols will be adopted for naming of files and versioning.

All anonymised new data will be prepared and stored in Lancaster University’s research data repository [via the university’s research information management system, Pure (Elsevier, Amsterdam, the Netherlands)] for a minimum of 10 years beyond the end of the project, under the university’s research data policy.

Ownership of copyright and intellectual property rights for all research conducted for the IMPART study will ultimately be held by Lancaster University, as sponsor. All new research data suitable for reuse will be available with an appropriate Creative Commons Licence (Attribution NonCommercial 4.0 International; CC BY-NC 4.0) that allows reuse by other researchers.

The PI is ultimately responsible for data management and sharing. The Lancaster University research data management team provided guidance on data management and sharing.

Extensive anonymised quotations from data collected during the study have been included in the report. All queries regarding these should be submitted to the corresponding author in the first instance. Access to further available anonymised data may be granted following review and if appropriate agreements are in place.

Disclaimers

This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Department of Health and Social Care.

← ReferencesList of supplementary material →

Attribution. Fiona Lobban; Duncan Appelbe; Victoria Appleton; Golnar Aref-Adib; Johanna Barraclough; Julie Billsborough et al. (2020). An online supported self-management toolkit for relatives of people with psychosis or bipolar experiences: the IMPART multiple case study. NIHR Journals Library. Copyright © Queen’s Printer and Controller of HMSO 2020. This work was produced by Lobban et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This issue may be freely reproduced for the purposes of private research and study and extracts (or indeed, the full report) may be included in professional journals provided that suitable acknowledgement is made and the reproduction is not associated with any form of advertising. Applications for commercial reproduction should be addressed to: NIHR Journals Library, National Institute for Health Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK. Licensed under CC BY 4.0. NCBI Bookshelf NBK562351. CC BY 4.0. Original source ↗. Text reproduced from the Bookshelf XML without changing wording; figures, images and supplements are not reproduced.

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