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Ryan S, Wallace L, Tilley E, et al. Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study. Southampton (UK): National Institute for Health and Care Research; 2024 Jun. (Health and Social Care Delivery Research, No. 12.16.)

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Improving support and planning ahead for older people with learning disabilities and family carers: a mixed-methods study.

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Appendix 4Work package 5: dissemination plan

Output/activity typeTitleWP AudienceAvailable
Press releaseNew research to improve support for older people with learning disabilities and end-of-life planning for carers: GOPA Growing older/Planning AheadAllAcademics, policy, voluntary sector, publicn/a
WebsiteImproving the support for older people with learning disabilities and BTCO, family and professional carers, and supporting EOLC planning for carersAllAcademics, policy, voluntary sector, public http://wels​.open.ac.uk​/research/growing-older-planning-ahead
Academic paper
British Journal of Learning Disabilities (BJLD)		‘Ethno … graphy?!? I can’t even say it’: Co-designing training for ethnographic research for people with learning disabilities and carersWP3Academics and co-researchers https:​//onlinelibrary​.wiley.com/doi/full/10.1111/bld.12424
Academic paper response
BJLD		Response to ‘Ethno … graphy?!? I can’t even say it’: Co‐designing training for ethnographic research for people with learning disabilities and carersWP3Academics and co-researchers https:​//onlinelibrary​.wiley.com/doi/full/10.1111/bld.12452
Academic paper
Systematic Reviews		Transitions for older people with learning disabilities and BTCO, and their family carers: a merged protocol for two rapid scoping reviews of evidenceWP1Academics https:​//systematicreviewsjournal​.biomedcentral​.com/articles/10​.1186/s13643-021-01883-3
Academic paper
BJLD		‘My name on the door by the Professor’s name’: The process of recruiting a researcher with a learning disability at a UK universityWP4Academics https:​//onlinelibrary​.wiley.com/doi/full/10.1111/bld.12477
Easy Read academic paperEasy Read report for the paper: ‘My name on the door by the Professor’s name’: The process of recruiting a researcher with a learning disability at a UK university (a case study)WP4PWLD, carers, public https:​//onlinelibrary​.wiley.com/action/downloadSupplement?doi=10​.1111%2Fbld.12477&file​=bld12477-sup-0004-Appendix​_4_Easy_read_version_of_paper.pdf
Academic paper
BJLD		‘Internet is easy if you know how to use it’: doing online research with people with learning disabilities during the COVID‐19 pandemicWP3Academics https:​//onlinelibrary​.wiley.com/doi/full/10.1111/bld.12495
Academic paper
Journal of Applied Research in Intellectual Disabilities		Transitions for older people with intellectual disabilities and BTCO: a rapid scoping reviewWP1Academics https://pubmed​.ncbi.nlm​.nih.gov/36433739/
Academic paper submitted to Health and Social Care in the CommunityTransition-related support for ageing family carers of older people with intellectual disabilities and BTCO: a systematic scoping reviewWP1AcademicsUnder review
Academic paper
International Journal of Social Research Methodology		Whose uncertainty? Learning disability research in a time of COVID-19WP3Academics www​.tandfonline.com/doi/full/10​.1080/13645579.2023.2173425
Academic paper
Journal of Applied Research in Intellectual Disabilities		'There's a timebomb': Planning for parental death and transitions in care for older people with intellectual disabilities and their familiesWP4Academics https:​//onlinelibrary​.wiley.com/doi/full/10.1111/jar.13174
Professional literature (Care Management Matters)Improving the support for older people with learning disabilities and behaviours that challenge, family and professional carers, and EOLC planning for carersAllSocial work professionals www​.caremanagementmatters​.co.uk/cmm-ebook-november-2020/
Professional literature (Care Management Matters)An update to the above piece sharing some project findingsAllSocial work professionals www​.caremanagementmatters​.co.uk/feature/paving-the-way-in-excellence-supporting-older-people-with-learning-disabilities-to-lead-good-lives/
Professional literature (Community Living)Putting research rightWP3Social work professionals, PWLD, carers, voluntary sector www​.cl-initiatives.co​.uk/putting-research-right/
Professional literature (Community Living)The foundations on which to build a real home
Having a good life requires having a place you feel is truly home. While research has found three common themes underpinning this, what fulfils these can change over time		WP3Social work professionals, PWLD, carers, voluntary sectorApril 2023
BlogPlanning ahead, older people with learning disabilities and a shake-up of ‘tired’ research practicesAllAcademics]https://enrich​.nihr.ac.uk/blogpost/
BlogServices and support for older people with learning disabilities with BTCO: what does good look like?WP2Academics, commissionersGrowing Older – Planning Ahead | An Open University research study
Twitter chatLearning Disability nursing web forum (WeLD) Nursing Twitter chatAllHealth and social care professionals www​.wecommunities.org​/tweet-chats/chat-details/5600
Training (delivered by University of Aberdeen and Point of Care Foundation)Foundations in patient experience – screenshots of materials and links to resourcesWP3Health professionalsn/a
FilmShort film of project at time of funder interim reportAllPWLD, carers, publicFacebook, Twitter
FilmVideo abstract for ‘My name on the door by the Professor’s name’: The process of recruiting a researcher with a learning disability at a UK universityWP4PWLD, carers, public www​.youtube.com/watch?v=BaoMF9HLwV4
Evidence blogHow to employ people with learning disabilities in researchWP4PWLD, carers, public https://evidence​.nihr​.ac.uk/alert/blog-how-to-employ-people-with-learning-disabilities-in-research/
FilmLiving well and ageing wellWP3PWLD, carers, public, voluntary sector, providersAvailable March 2024
FilmPlanning ahead and EOLCWP4PWLD, carers, public, voluntary sector, providers https://kingston​.box​.com/s/0eoshdfrpj3t6lbdw5o17nrw3ocycpvp
FilmGrowing Older, Planning AheadAllAcademics, PWLD, carers, public, voluntary sector, providers, commissioners, policyAvailable from March 2024 on Socialcaretalk.org
PodcastDoing research! What’s it like?!AllAvailable from March 2024
Media report‘A Fundamental Lack of Awareness that these People are Actually Human’: How the Government is Failing Older People with Learning DisabilitiesAllWider public https://bylinetimes​.com​/2023/05/03/a-fundamental-lack-of-awareness-that-these-people-are-actually-human-how-the-government-is-failing-older-people-with-learning-disabilities/
Course (OpenLearn)Supporting older PWLD and their families: a course for health and social care practitionersWP3, WP4Social care professionals www​.open.edu/openlearn​/health-sports-psychology​/supporting-older-people-learning-disabilities-and-their-families​/content-section-overview?active-tab​=description-tab
Course (OpenLearn)Supporting an older family member with learning disabilitiesWP3, WP4PWLD, family carers www​.open.edu/openlearn​/health-sports-psychology​/caring-older-family-member-learning-disabilities​/content-section-overview?active-tab​=description-tab
Course (CPD)Growing Older, Planning AheadWP3, WP4Social workersAvailable from March 2024
Forum the OUModerated forum to share best practice hosted by the OU and linked to CARENAllSocial care professionalshttps://wels​.open.ac​.uk/research/projects​/carers-research-group available from November 2023.
Planning ahead cardsPhysical and online conversation cardsWP4PWLD, family carers https://sway​.office.com/5LjAwlV0OFsHjBAj
Session plansSession plans for PWLD and family carers to think about good service provision and growing older wellWP3PWLD, family carersSee Appendix 5
Conference (SPCR public engagement event)Co-designing training materials for Growing Older, Planning AheadWP3PWLD, family carersn/a
Conference (Hospice UK)Planning for parental death and transitions in care for older people with learning disabilities: An adapted experience-based co-design projectWP4Academics https://spcare​.bmj.com​/content/12/Suppl_3/A1.1
Conference (International Association for the scientific study of intellectual and developmental disabilities)Recruiting a Research Assistant with intellectual disabilities at a UK university: A case studyWP4Academicsn/a
Conference (European Association of Palliative Care)Co-producing a Decision Aid Tool to Support Future Planning and EOLC Planning Discussions with Older Family Carers of People with Intellectual DisabilitiesWP4AcademicsJune 2023
Conference (Nordic Network on Disability Research)Experts by Experience on the Flourishing Lives and Growing Older projectsAllAcademics, PWLD, carers, publicMay 2023
Conference (Nordic Network on Disability Research)Inside out: The experience of being PPI Coordinator and family carer on the Flourishing Lives and Growing Older projectsAllAcademics, PWLD, carers, publicMay 2023
Conference (Nordic Network on Disability Research)Sticky labels and their consequences: people with learning disabilities and ‘behaviours that challenge others’AllAcademicsMay 2023
Conference (The Social History of Learning Disability Group, OU, 2023)Belonging and Community for Older People with Learning Disabilities: past, present and futureAllAcademics, PWLD, carers, publicJuly 2023
Copyright © 2024 Ryan et al.

This work was produced by Ryan et al. under the terms of a commissioning contract issued by the Secretary of State for Health and Social Care. This is an Open Access publication distributed under the terms of the Creative Commons Attribution CC BY 4.0 licence, which permits unrestricted use, distribution, reproduction and adaptation in any medium and for any purpose provided that it is properly attributed. See: https://creativecommons.org/licenses/by/4.0/. For attribution the title, original author(s), the publication source – NIHR Journals Library, and the DOI of the publication must be cited.

Bookshelf ID: NBK604523
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