Acknowledgements
The authors would like to thank the following:
The members of the Public Advisory Group, Jenny Carter, Mary Langan, Mary O’Toole and Frances Steepe, who together acted as a sounding board to the research team and provided advice across all aspects of the work.
The members of the Professional Advisory Group, who together gave their expertise specifically to inform the protocols for the WP1 rapid reviews and the criteria for excellence for the WP2 mapping work that informed the selection of case study sites for WP3. They engaged with the study as ‘critical friends’ for the later WPs from a senior policy, commissioning and practice perspective.
The external members of the independent SSC, chaired by Ruth Northway (Professor of Learning Disability Nursing, University of South Wales), Philippa Russell (Vice-President of Carers UK and family carer), Jill Manthorpe (Professor of Social Work, King’s College London), Elizabeth Tilly (founder of Building Bridges social enterprise), Sally Warren (Managing Director, Paradigm, a development and training organisation) and John Lish (expert by experience), for their support and guidance.
The GM GOLD team of older PWLD and their supporters who regularly included discussion of the study at their meetings and encouraged the researchers to seek their views as issues arose.
The research participants who agreed to take part in WP2, WP3 and WP4 and who variously gave interviews, attended focus groups, completed questionnaires, contributed to co-design work and let us ‘hang out’ with them as they lived their lives at the case study sites.
Jenny Carter, Sam Bennett and Kathy Liddell, who as PWLD or family carers contributed to the ethnography resources developed through engagement funding from the NIHR School for Primary Care Research.
Co-researchers Kerry Martin, Dawn Wiltshire, Shirley Odell and Richard Hughes on the WP3 ethnography and insights substantially increased the value of the work.
Chris Hatton, co-investigator, for his contribution to the overall study design, guidance throughout the study and insights during the development of the final resources and recommendations, providing specific expertise on health and social inequalities experienced by PWLD.
George Julian, freelance knowledge transfer consultant, who constantly challenged the research team to greatly improve the applicability of the research and the quality and utility of the research outputs.
Melanie Chapman, co-investigator at Manchester Metropolitan University, who contributed to the WP3 ethnography data collection and supporting co-researchers to contribute throughout. She convened and led the GM GOLD meetings and contributed text to the corresponding section of the report.
Jillian Pawlyn, Registered Nurse and lecturer in Learning Disabilities Nursing at the OU, who contributed to the WP1 rapid reviews, promoted the survey for WP2 and raised awareness of the study on social media and co-authored the OpenLearn course for health and social care practitioners.
Susan Ledger, a visiting fellow at the OU, who contributed to the WP3 ethnography by providing expertise on learning disability policy, legislation and practice guidance and contributed to data analysis at one site.
Noelle McCormack, visiting research fellow at the OU, who conducted the ethnography at two WP3 case study sites and contributed to the development of the WP3 coding framework.
Arne Mueller, researcher, who conducted the ethnography at one case study site and provided editorial assistance.
Luke Geohegan, Head of Policy and Research at the BASW, who as co-investigator advised on how the research findings might influence practice, leading the development of a practice guide for social workers.
Joanne Jordan, research fellow at the OU, who co-authored the protocol paper, conducted and co-authored the first two WP1 rapid reviews, and contributed to the third rapid review. She contributed analysis of interviews in WP2.
Mary Larkin, co-investigator, who contributed peer reviewed outputs for two WP1 reviews, lead author for an OpenLearn resource for carers in WP5, and set up a forum of best practice for carers linked to the OU’s Carer Research and Knowledge Exchange Network.
Jitka Vseteckova, co-investigator, who took a lead role in the WP1 protocols, contributed to the first two WP1 reviews and co-authored the papers describing that work.
Victoria Byrne, researcher at Manchester Metropolitan University, who contributed to the WP3 ethnography data collection and conducted the WP1 third rapid review at the OU.
Daniel Docherty, co-investigator with lived experience, for his contributions towards the study inception, as a member of the study team and through the GM GOLD meetings.
Lisa Davidson from the self-advocacy organisation My Life My Choice, Oxford, who supported Public Involvement co-investigator Bebbington throughout.
Vanessa Eade, who was instrumental in obtaining the necessary ethics approvals for WP3, and Elizabeth Woolliams, who provided unwavering practical help and administrative support when the study was led from the University of Oxford.
Sally Warren (Managing Director of Paradigm) and Jo Giles (research assistant from Kingston University and also of Paradigm), who together developed the Continuing Professional Development course for social workers. Giles also supported Richard Keagan-Bull in his role as a researcher on WP4.
The OpenLearn team at the OU for supporting the production of two OpenLearn courses, one for family carers and one for practitioners.
Gail Hanrahan and Ben Briggs for forming part of the critical panel for the OpenLearn resources.
Jennifer Bostock, an experienced patient and public involvement representative for NIHR, for delivering training to public contributors on how to participate in research studies effectively as a lay participant.
Grace Barnes for illustrating the ‘Planning Ahead’ cards.
The team at Opening Doors, an organisation run by PWLD, for providing the research team with training in producing Easy Read materials.
Martin Simpson-Scott, Monitoring Programme Manager at NIHR, for providing support and sound advice.
Contributions of authors
Sara Ryan (https://orcid.org/0000-0002-7406-1610) (Professor of Social Care, Co-Principal Investigator) co-led the overall design and provided academic leadership for the study, supervised the WP3 ethnography, contributed to the WP5 OpenLearn resources and led the development of the course for social workers and the film, sat on the SSC, led the writing of the final report including as lead author for Chapters 1, 4, 5, 7 and 9 and gave final approval of the manuscript.
Louise Wallace (https://orcid.org/0000-0003-3770-0580) (Professor of Psychology and Health, Co-Principal Investigator) co-led the overall design and provided academic leadership for the study, chaired the Professional Advisory Group, co-authored the papers describing WP1 rapid reviews 1 and 2, conducted the WP2 work to identify exemplars of good practice, contributed to the WP5 OpenLearn resources, set up and managed the project website, contributed expertise to the other WPs, was a member of the SSC, authored Chapter 3, contributed to other chapters of the final report, and gave final approval of the manuscript.
Elizabeth Tilley (https://orcid.org/0000-0003-4665-394X) Senior Lecturer in Health and Social Care, co-investigator) contributed to the overall study design, led the WP1 rapid reviews, the WP3 ethnography at two case study sites and the WP5 OpenLearn courses, contributed expertise to the other WPs, was lead author of Chapter 2, contributed to other chapters of the final report, particularly Chapters 4, 5 and 7, and gave final approval of the manuscript.
Irene Tuffrey-Wijne (https://orcid.org/0000-0002-7288-9529) (Professor of Intellectual Disability and Palliative Care, co-investigator) contributed to the overall study design, led the WP4 end-of-life planning work, contributed expertise to the other WPs, co-authored Chapter 6, contributed to other chapters of the final report and gave final approval of the manuscript.
Magdalena Mikulak (https://orcid.org/0000-0002-1519-7673) (Senior Research Fellow in Health and Social Care) contributed to the design of the WP3 ethnography, conducted the ethnography at four case study sites, contributed to the WP5 resources, co-authored Chapters 4 and 5, contributed to other chapters of the final report and gave final approval of the manuscript.
Rebecca Anderson (https://orcid.org/0000-0002-7095-8914) (Research Associate in Health and Social Care) contributed to the design of and conducted the WP4 end-of-life planning work, was lead author for Chapter 6, contributed to other chapters of the final report and gave final approval of the manuscript.
Angeli Vaid (https://orcid.org/0009-0007-4102-1165) (Public Involvement Lead, Co-investigator) contributed to the overall study design, led patient and public involvement activities and input throughout the study, chaired the Public Advisory Group and supported other public members, was a co-researcher on the WP3 ethnography, contributed to the WP5 resources, co-authored Chapter 8, contributed to other chapters of the final report and gave final approval of the manuscript.
Pam Bebbington (https://orcid.org/0000-0002-4274-9883) (expert by experience, co-investigator) contributed a lay perspective to the overall study design, and provided expert by experience advice throughout the study, was a co-researcher on the WP3 ethnography, contributed to the WP5 resources, contributed to the final report and gave final approval of the manuscript.
Richard Keagan-Bull (https://orcid.org/0009-0006-0278-8112) (Research Assistant and expert by experience) contributed the perspective of a person with learning disabilities to the design of the WP4 end of life planning work, jointly conducted the WP4 work with support from Anderson, provided expert by experience advice throughout the study, contributed to the final report and gave final approval of the manuscript.
Emmie Morrissey (https://orcid.org/0000-0003-0801-8128) (Research Project Manager, project management) contributed to specific aspects of the study design and managed the conduct of the study with Martin, contributed to the final report and gave final approval of the manuscript.
Angela Martin (https://orcid.org/0000-0001-6196-0409) (Research Operations Manager) project management, contributed to the overall study design and managed the conduct of the study, co-authored Chapter 8 on patient and public involvement, co-ordinated and contributed to the authorship of the final report and gave final approval of the manuscript.
Disclosure of interests
Full disclosure of interests: Completed ICMJE forms for all authors, including all related interests, are available in the toolkit on the NIHR Journals Library report publication page at https://doi.org/10.3310/MTHW2644.
Primary conflicts of interest: Each named author has competed the ICMJE Uniform Disclosure Form for potential conflicts of interest (COI).
Sara Ryan declares membership of the National Institute for Health and Care Research (NIHR) Research for Social Care (RfSC) Funding Committee and that she is a Trustee of LMCP Care Link, was principal investigator of NIHR128616 and is co-principal investigator of NIHR135080 and NIHR131322. Irene Tuffrey-Wijne is principal investigator of the NIHR RfSC-funded project (NIHR202963). Elizabeth Tilley is a co-applicant on NIHR202963. Rebecca Anderson is co-principal investigator on NIHR202963. Louise Wallace was co-investigator of NIHR130995, NIHR Health and Social Care Delivery Research (HSDR) 17/05/30 and is co-principal investigator of NIHR131322 and NIHR205625. Louise Wallace was a member of the NIHR HSDR Commissioned Funding Committee 1 November 2019–30 November 2022, HSDR Remit and Competitiveness commissioned workstream 2015–19, SDO – NHS Evaluations Panel Member 2009–11 and HSDR Funding Committee (Seacole) 2020–22.
Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to all deidentified data may be granted following review.
Ethics statement
The WP2 scoping and mapping exercise was approved by the Human Research Ethics Committee, the Open University (reference HREC/3636/Wallace, obtained 14 July 2020). The WP3 ethnography was approved by the London – Camden and Kings Cross Research Ethics Committee (reference 12/LO/0062, obtained 1 February 2021). The WP4 stage 1 interviews and focus groups was approved by the Social Care Research Ethics Committee (reference 20/IEC08/0035, obtained 13 November 2020); the stage 2 co-designing resources was approved by the London – Camberwell St Giles Research Ethics Committee (reference 21/LO/0494, obtained 9 August 2021); and the stage 3 evaluation of the resources was approved by the Yorkshire and the Humber – Bradford Leeds Research Ethics Committee (reference 22/YH/0138, obtained 25 July 2022).
Information governance statement
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Department of Health and Social Care disclaimer
This publication presents independent research commissioned by the National Institute for Health and Care Research (NIHR). The views and opinions expressed by the interviewees in this publication are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, MRC, NIHR Coordinating Centre, the HSDR programme or the Department of Health and Social Care.
This monograph was published based on current knowledge at the time and date of publication. NIHR is committed to being inclusive and will continually monitor best practice and guidance in relation to terminology and language to ensure that we remain relevant to our stakeholders.
Publication
Mikulak M, Ryan S, Tilley E, Ledger S, Davidson L, Bebbigton P, Wiltshire D. Sticky categories and their negative consequences: people with learning disabilities and ‘behaviours that challenge others’. Scand J Disabil Res 2024;26(1):110–23. https://doi.org/10.16993/sjdr.1069
Disclaimers
This article presents independent research funded by the National Institute for Health and Care 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, the HSDR 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, the HSDR programme or the Department of Health and Social Care.
