BackgroundChildren and young people (CYP) with severe or profound and multiple learning disabilities are more likely to experience difficulties engaging for long periods. Finding ways to facilitate their engagement is crucial in promoting their social and emotional development and their mental well‐being, particularly as they are more vulnerable to difficulties with mental well‐being compared to their peers.MethodsWe undertook a systematic literature review (SLR) to identify approaches described within peer‐reviewed research literature that enhance the engagement of these children. Data from seven relevant studies were qualitatively synthesised. Thematic networks were then developed to visually present global, organising and basic themes identified within data.FindingsA global theme derived from organising themes across studies indicated that the quality of space is an important consideration in enhancing engagement. This included the extent to which space adhered to prescribed knowledge or afforded practitioners with opportunities to follow their intuition and deviate from such ideas.ConclusionsQuality of space may be important to the engagement of these CYP and consequently to their mental well‐being. This may involve consideration of the extent to which formal learning environments for them are organised and informed by dominant theory and discourse (abstract space), prescribed (spatial) practice and the extent to which environments provide conditions for ‘lived spaces’ that are potentially more facilitative of their engagement and so their mental well‐being.
{"title":"What Approaches Described in Research Literature Enhance the Engagement of Children and Young People With Severe or Profound and Multiple Learning Disabilities? A Systematic Literature Review","authors":"Dominic Fitzpatrick, Richard Parker","doi":"10.1111/bld.12619","DOIUrl":"https://doi.org/10.1111/bld.12619","url":null,"abstract":"BackgroundChildren and young people (CYP) with severe or profound and multiple learning disabilities are more likely to experience difficulties engaging for long periods. Finding ways to facilitate their engagement is crucial in promoting their social and emotional development and their mental well‐being, particularly as they are more vulnerable to difficulties with mental well‐being compared to their peers.MethodsWe undertook a systematic literature review (SLR) to identify approaches described within peer‐reviewed research literature that enhance the engagement of these children. Data from seven relevant studies were qualitatively synthesised. Thematic networks were then developed to visually present global, organising and basic themes identified within data.FindingsA global theme derived from organising themes across studies indicated that the quality of space is an important consideration in enhancing engagement. This included the extent to which space adhered to prescribed knowledge or afforded practitioners with opportunities to follow their intuition and deviate from such ideas.ConclusionsQuality of space may be important to the engagement of these CYP and consequently to their mental well‐being. This may involve consideration of the extent to which formal learning environments for them are organised and informed by dominant theory and discourse (abstract space), prescribed (spatial) practice and the extent to which environments provide conditions for ‘lived spaces’ that are potentially more facilitative of their engagement and so their mental well‐being.","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"34 1","pages":""},"PeriodicalIF":1.5,"publicationDate":"2024-09-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142269307","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}
BackgroundThe present study investigated staff perspectives on supporting individuals with intellectual disabilities with mental health relapse prevention.MethodsEight staff with experience working with or supporting individuals engaged with a specialist mental health in intellectual disability (MHID) service (team member = 2, management roles = 2, nursing/social care = 4; average years' experience = 16 years, SD = 13.7) completed semi‐structured interviews and thematic analysis was conducted on the resulting data.FindingsParticipants held mostly positive views of MHID supports and described being actively involved in individualised and person‐centred mental health supports. There was variation in awareness and recognition of relapse prevention between MHID and other (frontline) staff. Although frontline staff generally did not express explicit knowledge of relapse prevention, there was implicit staff awareness surrounding ongoing mental health supports, managing risk and coping strategies. Frontline staff also reported a lack of knowledge of the discharge process from the MHID service. Staff questioned the nature of discharge in mental health intellectual disability supports.ConclusionThis study identifies a gap in frontline staff's explicit knowledge of mental health relapse prevention, while also highlighting the importance of ongoing mental health support for individuals with intellectual disabilities.
{"title":"Staff Perceptions of Mental Health Relapse Prevention Support in a Specialist Mental Health Service in an Intellectual Disability Setting","authors":"Shannon Sinnott, Cliodhna O'Donovan, Suzanne Guerin","doi":"10.1111/bld.12617","DOIUrl":"https://doi.org/10.1111/bld.12617","url":null,"abstract":"BackgroundThe present study investigated staff perspectives on supporting individuals with intellectual disabilities with mental health relapse prevention.MethodsEight staff with experience working with or supporting individuals engaged with a specialist mental health in intellectual disability (MHID) service (team member = 2, management roles = 2, nursing/social care = 4; average years' experience = 16 years, SD = 13.7) completed semi‐structured interviews and thematic analysis was conducted on the resulting data.FindingsParticipants held mostly positive views of MHID supports and described being actively involved in individualised and person‐centred mental health supports. There was variation in awareness and recognition of relapse prevention between MHID and other (frontline) staff. Although frontline staff generally did not express explicit knowledge of relapse prevention, there was implicit staff awareness surrounding ongoing mental health supports, managing risk and coping strategies. Frontline staff also reported a lack of knowledge of the discharge process from the MHID service. Staff questioned the nature of discharge in mental health intellectual disability supports.ConclusionThis study identifies a gap in frontline staff's explicit knowledge of mental health relapse prevention, while also highlighting the importance of ongoing mental health support for individuals with intellectual disabilities.","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"40 1","pages":""},"PeriodicalIF":1.5,"publicationDate":"2024-09-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142194987","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}
Félix González‐Carrasco, Felipe Espinosa Parra, Izaskun Álvarez‐Aguado, Sebastián Ponce Olguín, Vanessa Vega Córdova, Miguel Roselló‐Peñaloza
BackgroundThe study focuses on the need to optimise assessment scales for support needs in individuals with intellectual and developmental disabilities. Current scales are often lengthy and redundant, leading to exhaustion and response burden. The goal is to use machine learning techniques, specifically item‐reduction methods and selection algorithms, to develop shorter and more efficient scales.MethodsA data set of 93 participants was analysed using the Supports Needs Scale. Five feature‐selection algorithms were evaluated to create a shortened questionnaire. For each algorithm, a Random Forest model was trained, and performance was assessed using metrics like accuracy, precision, recall and F1‐score to measure how well each model predicted support needs.FindingsThe "Select from Model" algorithm successfully identified key items that could predict the level of Support Needs using the Random Forest model. Only 51 variables, out of the original 147, were needed to maintain predictive accuracy. The reduced questionnaire maintained good reliability and internal consistency compared to the original instrument, with a strong F1 score indicating excellent predictive performance.ConclusionsThe study demonstrates that machine learning techniques are effective in reducing the length of support needs questionnaires while preserving their psychometric properties. These methods can help institutions provide more efficient access to information about support needs without compromising validity or reliability, potentially leading to better resource allocation and improved care for individuals with intellectual disabilities.
背景这项研究的重点是需要优化智力和发育障碍人士的支持需求评估量表。目前的量表通常冗长而多余，会导致疲惫和回答负担。我们的目标是利用机器学习技术，特别是项目缩减方法和选择算法，开发出更简短、更高效的量表。我们对五种特征选择算法进行了评估，以制作出更简短的问卷。对每种算法都训练了一个随机森林模型，并使用准确率、精确度、召回率和 F1 分数等指标对性能进行评估，以衡量每个模型预测支持需求的效果。在原来的 147 个变量中，只需要 51 个变量就能保持预测的准确性。与原始问卷相比，缩减后的问卷保持了良好的可靠性和内部一致性，强大的 F1 分数表明问卷具有出色的预测性能。这些方法可以帮助机构更有效地获取有关支持需求的信息，同时又不会影响有效性或可靠性，从而有可能改善资源分配和对智障人士的护理。
{"title":"Item reduction of the “Support Intensity Scale” for people with intellectual disabilities, using machine learning","authors":"Félix González‐Carrasco, Felipe Espinosa Parra, Izaskun Álvarez‐Aguado, Sebastián Ponce Olguín, Vanessa Vega Córdova, Miguel Roselló‐Peñaloza","doi":"10.1111/bld.12616","DOIUrl":"https://doi.org/10.1111/bld.12616","url":null,"abstract":"BackgroundThe study focuses on the need to optimise assessment scales for support needs in individuals with intellectual and developmental disabilities. Current scales are often lengthy and redundant, leading to exhaustion and response burden. The goal is to use machine learning techniques, specifically item‐reduction methods and selection algorithms, to develop shorter and more efficient scales.MethodsA data set of 93 participants was analysed using the Supports Needs Scale. Five feature‐selection algorithms were evaluated to create a shortened questionnaire. For each algorithm, a Random Forest model was trained, and performance was assessed using metrics like accuracy, precision, recall and F1‐score to measure how well each model predicted support needs.FindingsThe \"Select from Model\" algorithm successfully identified key items that could predict the level of Support Needs using the Random Forest model. Only 51 variables, out of the original 147, were needed to maintain predictive accuracy. The reduced questionnaire maintained good reliability and internal consistency compared to the original instrument, with a strong F1 score indicating excellent predictive performance.ConclusionsThe study demonstrates that machine learning techniques are effective in reducing the length of support needs questionnaires while preserving their psychometric properties. These methods can help institutions provide more efficient access to information about support needs without compromising validity or reliability, potentially leading to better resource allocation and improved care for individuals with intellectual disabilities.","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"41 1","pages":""},"PeriodicalIF":1.5,"publicationDate":"2024-08-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142194974","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}
Christina Roberts, Nicola Ditzel, Nicola Cooper‐Moss, Katie Umbleby, Umesh Chauhan
BackgroundPeople with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.MethodsThis codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.FindingsThere was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare‐seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.ConclusionsPeople from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.
{"title":"Culturally adaptive healthcare for people with a learning disability from an ethnic minority background: A qualitative synthesis","authors":"Christina Roberts, Nicola Ditzel, Nicola Cooper‐Moss, Katie Umbleby, Umesh Chauhan","doi":"10.1111/bld.12614","DOIUrl":"https://doi.org/10.1111/bld.12614","url":null,"abstract":"BackgroundPeople with a learning disability face health inequality. Those from ethnic minority backgrounds with a learning disability face ‘double discrimination’ as members of two marginalised groups.MethodsThis codesigned review consolidated the evidence on the healthcare experiences of individuals and their carers from ethnic minority backgrounds with a learning disability. Three electronic databases were searched for UK studies from January 1990 to June 2022. Qualitative data from 28 studies were analysed using thematic framework analysis.FindingsThere was an overarching theme of ‘culture, choice and conflicts of control’, which related to the variable preferences for involvement in healthcare decisions. Cultural and individual factors impacted upon experience, with themes relating to ‘misunderstanding and mistrust’, ‘discrimination and stigma’, ‘isolation’, ‘feelings of shame and blame’, ‘burdens of care’ and ‘carer wellbeing’. Factors associated with healthcare‐seeking and care provision are described in the themes ‘triangles of care’, ‘community networks’ and ‘adaptive communication’.ConclusionsPeople from ethnic minority backgrounds with learning disability experience complex barriers which influence their healthcare experiences. Recognising and understanding discrimination can be difficult for people with a learning disability. Carers face challenges which influence their own wellbeing. Services need to be responsive to individual cultural contexts, while addressing potential conflicts of control.","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"40 1","pages":""},"PeriodicalIF":1.5,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142194975","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}
Esther Murphy, Orla Shiels, Sara Fiori, Darren McCausland, Helena Bergström, Raphael Koster, Hanna Noorlandt, Ida Korfage, Eva Flygare Wallén
BackgroundDevelopments in digital technologies have transformed how people interact with the world, offering employment, education, communication, health benefits and entertainment. Research has shown that not everyone can easily access digital content, particularly people with intellectual disabilities. Despite internet access being recognised as a human right in the United Nations' Conventions on the Rights of Persons with Disabilities, this group faces significant disadvantages.MethodsA thematic analysis of quantitative and qualitative findings was conducted with data from focus groups and interviews with 200+ participants across Ireland, Sweden, France, and the Netherlands on how people with intellectual disabilities are using technology at this time and access facilitators and barriers.FindingsThe pandemic exacerbated the digital divide between people with intellectual disabilities and their neurotypical peers, impacting physical and mental well‐being. Growing demand for accessible digital skills training underscores the need to bridge this gap.ConclusionAddressing these digital access disparities is crucial to ensure that individuals with intellectual disabilities can enjoy the benefits of the digital age and maintain their well‐being. By identifying priority topics in our interview data, researchers also pinpointed critical accessibility barriers and facilitators to support codesigning activities for future digital skills education content within the Digi‐ID project.
{"title":"Bridging the digital divide for individuals with intellectual disabilities: Implications for well‐being and inclusion","authors":"Esther Murphy, Orla Shiels, Sara Fiori, Darren McCausland, Helena Bergström, Raphael Koster, Hanna Noorlandt, Ida Korfage, Eva Flygare Wallén","doi":"10.1111/bld.12613","DOIUrl":"https://doi.org/10.1111/bld.12613","url":null,"abstract":"BackgroundDevelopments in digital technologies have transformed how people interact with the world, offering employment, education, communication, health benefits and entertainment. Research has shown that not everyone can easily access digital content, particularly people with intellectual disabilities. Despite internet access being recognised as a human right in the United Nations' Conventions on the Rights of Persons with Disabilities, this group faces significant disadvantages.MethodsA thematic analysis of quantitative and qualitative findings was conducted with data from focus groups and interviews with 200+ participants across Ireland, Sweden, France, and the Netherlands on how people with intellectual disabilities are using technology at this time and access facilitators and barriers.FindingsThe pandemic exacerbated the digital divide between people with intellectual disabilities and their neurotypical peers, impacting physical and mental well‐being. Growing demand for accessible digital skills training underscores the need to bridge this gap.ConclusionAddressing these digital access disparities is crucial to ensure that individuals with intellectual disabilities can enjoy the benefits of the digital age and maintain their well‐being. By identifying priority topics in our interview data, researchers also pinpointed critical accessibility barriers and facilitators to support codesigning activities for future digital skills education content within the Digi‐ID project.","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"85 1","pages":""},"PeriodicalIF":1.5,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141783430","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}
<div> <section> <h3> Background</h3> <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> </section> <section> <h3> Methods</h3> <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> </section> <section> <h3> Findings</h3> <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> </section> <section> <h3> Conclusions</h3> <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
{"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
Background
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.
Methods
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.
Findings
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.
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.
Conclusions
Making theory accessible and easier to understand is both possible and valuable.
{"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}
I'm Me is a creative research project co-created between York St John University and Mind the Gap, investigating learning disabled and autistic artists’ understandings of identity, representation and voice.
Methods
In this paper, we use Walmsley and Johnson's criteria for inclusive research to reflect on the involvement of people with learning disabilities and autism in I'm Me.
Findings
Researchers need to carefully reflect on who benefits from research. Long-term relationships allow genuine allyship and for research design to emerge in an inclusive manner. Taking the time to develop access and clear structures for decision-making can support people with learning disabilities’ participation and control over research. Part of access is sharing our findings in accessible ways, in this case, by using plain language and artistic outputs.
Conclusions
Working out how people with learning disabilities and autism should be involved in research has involved establishing structures, reflecting and responding to create as much involvement and enable as much decision-making as possible.
我是我 "是约克圣约翰大学（York St John University）与 "缩小差距 "组织（Mind the Gap）合作开展的一个创意研究项目，旨在调查学习障碍者和自闭症艺术家对身份、代表性和话语权的理解。在本文中，我们采用沃姆斯利（Walmsley）和约翰逊（Johnson）提出的包容性研究标准，对 "我是我 "中学习障碍者和自闭症患者的参与情况进行反思。研究人员需要仔细思考谁能从研究中获益。长期的合作关系可以建立真正的盟友关系，并以包容性的方式进行研究设计。花时间开发决策通道和明确的决策结构，可以支持学习障碍者参与和控制研究。如何让学习障碍者和自闭症患者参与到研究中来，这涉及到建立结构、反思和回应，以创造尽可能多的参与机会并促成尽可能多的决策。
{"title":"Working it out together: Lessons and insights into inclusive research in an arts context","authors":"Matthew Reason, Kelsie Acton, Daniel Foulds","doi":"10.1111/bld.12609","DOIUrl":"10.1111/bld.12609","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p><i>I'm Me</i> is a creative research project co-created between York St John University and Mind the Gap, investigating learning disabled and autistic artists’ understandings of identity, representation and voice.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>In this paper, we use Walmsley and Johnson's criteria for inclusive research to reflect on the involvement of people with learning disabilities and autism in <i>I'm Me</i>.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Researchers need to carefully reflect on who benefits from research. Long-term relationships allow genuine allyship and for research design to emerge in an inclusive manner. Taking the time to develop access and clear structures for decision-making can support people with learning disabilities’ participation and control over research. Part of access is sharing our findings in accessible ways, in this case, by using plain language and artistic outputs.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Working out <i>how</i> people with learning disabilities and autism should be involved in research has involved establishing structures, reflecting and responding to create as much involvement and enable as much decision-making as possible.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 4","pages":"676-686"},"PeriodicalIF":1.2,"publicationDate":"2024-06-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12609","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141358020","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}
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