{"title":"Umbrella review of hospital passports: Their use and improvements","authors":"Jennifer Jackson, Jessica Sinyor, Hayley Trower","doi":"10.1111/bld.12612","DOIUrl":"10.1111/bld.12612","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The hospital or health passport is widely acknowledged as a central element in making reasonable adjustments for patients with intellectual disabilities. Historically, the health passport has been used exclusively for patients with intellectual disabilities; however, it has wider applications for any patient requiring additional support. Commonly, it documents past medical history, communication needs and a person's means of expressing pain. There are, however, significant barriers to their use, meaning patients are unable to access adjustments to improve their experiences in a healthcare system that already marginalises and discriminates against people with intellectual disabilities. This umbrella review aims to establish whether the passport is an effective reasonable adjustment, identify barriers to its use and make recommendations to alleviate these barriers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Database and citation searches informed a synthesis of international evidence to address these aims. Following the removal of duplicates and screening, nine review papers originating from the United Kingdom, Australia and Ireland were identified for inclusion. Seven focus on the use of passports for patients with intellectual disabilities, one on the use of passports for autistic people, and one exploring the use of passports for patients with dementia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The results demonstrated that the passports are effective in improving care for patients with intellectual disabilities. However, there are barriers to its routine use. We identified three main issues with the current use of the hospital passport. First, there is a need for greater managerial support to implement reasonable adjustments. Second, standardisation of the passports at a national level will make them more accessible to healthcare professionals and will ensure that information is not ‘buried’; the development of a standardised passport must involve consultation of patients, carers and staff to meet the needs of all stakeholders. Finally, education for all healthcare staff to raise awareness of the passport and ensure it is utilised appropriately will ultimately pave the way for positive, long-lasting change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Passports can be an effective means of communicating reasonable adjustments. Addressing a lack of awareness of its utility, ensuring managerial commitment to implementing reasonable adjustments and making the passport accessible through a standard","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"700-708"},"PeriodicalIF":1.2,"publicationDate":"2024-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12612","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141738439","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Nicola Grove, Simon Richards, Simon Rice, Claudia Magwood, Bryan Collis, Steffen Martick, Saskia Schuppener, Gertraud Kremsner, Elizabeth Tilley, Jan Walmsley
{"title":"Big ideas that changed the world of disability: Exploring theory with self-advocates","authors":"Nicola Grove, Simon Richards, Simon Rice, Claudia Magwood, Bryan Collis, Steffen Martick, Saskia Schuppener, Gertraud Kremsner, Elizabeth Tilley, Jan Walmsley","doi":"10.1111/bld.12611","DOIUrl":"10.1111/bld.12611","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Inclusive research has sidelined discussion of theoretical issues with researchers with intellectual/learning disabilities. This is a situation which the Big Ideas initiative sought to change. Between 2021 and 2023, the Open University, Leipzig University and the University of Koblenz organised nine workshops to explore influential theories in disability research. The objective was to share a theory (Big Idea) that sheds light on disability with self-advocates and discuss how it relates to their experience. By making theories accessible and discussing how they relate to lived experience, we aimed to inform self-advocates and activist researchers about key concepts in disability, deepen their capacity for research and campaigning, and better equip them to activate for change.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The online workshops were evaluated by observers. These observations were used by an inclusive group of activist researchers as the basis for an overall evaluation of the project.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>People with learning disabilities can engage with complex theories if these are presented accessibly alongside opportunities for reflective discussion. Input from self-advocates helps to broaden and deepen theoretical understanding.</p>\u0000 \u0000 <p>An unanticipated but important finding was that the Big Ideas workshops created a new space in which academics and self-advocates could learn together as equals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Making theory accessible and easier to understand is both possible and valuable.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"687-699"},"PeriodicalIF":1.2,"publicationDate":"2024-07-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12611","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141738440","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Hazel M. Chapman, Martin McMahon, Alexandra Kaley, Kay Mafuba, Mary-Ann O'Donovan
{"title":"Editorial: The case for more action and more research into healthcare provision and health inequalities for people with intellectual disabilities","authors":"Hazel M. Chapman, Martin McMahon, Alexandra Kaley, Kay Mafuba, Mary-Ann O'Donovan","doi":"10.1111/bld.12610","DOIUrl":"10.1111/bld.12610","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"437-442"},"PeriodicalIF":1.2,"publicationDate":"2024-06-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141529867","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Don't put us away: Memories of a man with learning disabilities By \u0000 Richard Keagan-Bull, forward by Mel Giedroyc, Critical Publishing. 2022. pp. 184. £18.99.","authors":"Nathaniel Lawford","doi":"10.1111/bld.12608","DOIUrl":"10.1111/bld.12608","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"713-714"},"PeriodicalIF":1.2,"publicationDate":"2024-06-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141343510","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}