During pregnancy, some women with an intellectual disability encounter some challenges, and some midwives who provide them with support lack the knowledge to provide the best care. This systematic review explores the experiences of women with intellectual disability during pregnancy and midwives' experiences of providing care.
Method
Four databases were searched (PubMed, CINHAL, PsycINFO and Web of Science) and the resultant studies were appraised for quality using CASP. The selected papers were published between January 2012 and December 2022 and originated from the United Kingdom, Sweden, Canada and Ireland.
Results
Eight studies were included: five examined the experiences of pregnant women with intellectual disability, one investigated the midwives' experiences of caring and two analysed both groups. The primary themes amongst women included pregnancy announcements, involvement in their care and fear of losing their baby custody. The midwives expressed their lack of readiness and need for additional support. Both groups recognised the necessity for improved education and accessible communication.
Conclusion
Women with intellectual disabilities who are in the context of this review revealed their requirement for improved education and assistance in understanding antenatal information. The midwives within the included studies felt inadequately prepared to support women with intellectual disabilities: they lacked specialist training and required additional support in health education and communication skills.
{"title":"A Systematic Review to Explore Antenatal Care From the Perspectives of Women With Intellectual Disabilities and Midwives","authors":"Weam Alhulaibi, Janine Stockdale, Paul McAleer","doi":"10.1111/bld.12618","DOIUrl":"https://doi.org/10.1111/bld.12618","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>During pregnancy, some women with an intellectual disability encounter some challenges, and some midwives who provide them with support lack the knowledge to provide the best care. This systematic review explores the experiences of women with intellectual disability during pregnancy and midwives' experiences of providing care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Four databases were searched (PubMed, CINHAL, PsycINFO and Web of Science) and the resultant studies were appraised for quality using CASP. The selected papers were published between January 2012 and December 2022 and originated from the United Kingdom, Sweden, Canada and Ireland.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Eight studies were included: five examined the experiences of pregnant women with intellectual disability, one investigated the midwives' experiences of caring and two analysed both groups. The primary themes amongst women included pregnancy announcements, involvement in their care and fear of losing their baby custody. The midwives expressed their lack of readiness and need for additional support. Both groups recognised the necessity for improved education and accessible communication.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Women with intellectual disabilities who are in the context of this review revealed their requirement for improved education and assistance in understanding antenatal information. The midwives within the included studies felt inadequately prepared to support women with intellectual disabilities: they lacked specialist training and required additional support in health education and communication skills.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"87-102"},"PeriodicalIF":1.2,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12618","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143447052","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}
Paul Watts, Janet Hoskin, Radhika Upadhyay, Emma Tapley, Gosia Kwiatkowska
Introduction
This paper examines the experiences of people with learning disabilities in the United Kingdom as society transitions towards cashless transactions and services. It is a significant study because it highlights the need to understand their digital financial experiences.
Methods
This study employed an inclusive, interpretivist approach, focusing on participatory methods. Reflexive thematic analysis was used to analyse data from focus groups including 40 people with learning disabilities across 3 day services. This original study included co-researchers with lived experience of learning disabilities who assisted in data collection and analysis.
Results
Four key themes emerged: heterogeneity of preferences for cash versus digital payments; the urgent need for support and training in digital financial literacy; balancing safeguarding and fostering independence; and accessibility challenges in physical and online banking environments.
Conclusions
The shift to a cashless society poses significant challenges for people with learning disabilities, requiring tailored support and training in digital finance. Financial institutions should be cognisant of these needs, suggesting that systemic changes are required for improved financial inclusion. The study highlights the importance of including people with learning disabilities in the design of digital financial tools and policies, to support their financial autonomy and independence.
{"title":"“I Forgot My Numbers and the Machine Swallowed It Up”: Adults With Learning Disabilities Share Their Perspectives on the Shift to a Cashless Society","authors":"Paul Watts, Janet Hoskin, Radhika Upadhyay, Emma Tapley, Gosia Kwiatkowska","doi":"10.1111/bld.12621","DOIUrl":"https://doi.org/10.1111/bld.12621","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Introduction</h3>\u0000 \u0000 <p>This paper examines the experiences of people with learning disabilities in the United Kingdom as society transitions towards cashless transactions and services. It is a significant study because it highlights the need to understand their digital financial experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study employed an inclusive, interpretivist approach, focusing on participatory methods. Reflexive thematic analysis was used to analyse data from focus groups including 40 people with learning disabilities across 3 day services. This original study included co-researchers with lived experience of learning disabilities who assisted in data collection and analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Four key themes emerged: heterogeneity of preferences for cash versus digital payments; the urgent need for support and training in digital financial literacy; balancing safeguarding and fostering independence; and accessibility challenges in physical and online banking environments.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The shift to a cashless society poses significant challenges for people with learning disabilities, requiring tailored support and training in digital finance. Financial institutions should be cognisant of these needs, suggesting that systemic changes are required for improved financial inclusion. The study highlights the importance of including people with learning disabilities in the design of digital financial tools and policies, to support their financial autonomy and independence.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"103-112"},"PeriodicalIF":1.2,"publicationDate":"2024-09-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12621","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143447054","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}
Edina Hanley, Caroline Dalton, Elaine Lehane, Anne-Marie Martin
Background
This study explores communication partners' perceptions of their roles and responsibilities in the design, planning and use of augmentative and alternative communication (AAC) with individuals with severe/profound intellectual disability.
Methods
A qualitative descriptive approach was used. Purposive sampling, data collection and qualitative content analysis were undertaken simultaneously. Data were collected from nine participants, four parents and five professionals over 4 months through audio or video-recorded, semi-structured, open-ended interviews.
Findings
An overarching theme ‘Maximising Communication through AAC’ emerged, capturing participants' unanimous agreement that their shared goal was to optimise individuals' communication through AAC. This was influenced by three themes: ‘Developing a Communicative Environment’, ‘The Act of Communicating; Attempting to Realise the Individuals' Ability’ and ‘Living with Uncertainty’.
Conclusions
These findings contribute to enhancing understanding of AAC use with individuals with severe/profound intellectual disability and their communication partners.
{"title":"Communication Partners' Perceptions of Their Roles and Responsibilities in the Design, Planning and Use of Augmentative and Alternative Communication With Individuals With Severe or Profound Intellectual Disability: A Qualitative Descriptive Study","authors":"Edina Hanley, Caroline Dalton, Elaine Lehane, Anne-Marie Martin","doi":"10.1111/bld.12620","DOIUrl":"https://doi.org/10.1111/bld.12620","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study explores communication partners' perceptions of their roles and responsibilities in the design, planning and use of augmentative and alternative communication (AAC) with individuals with severe/profound intellectual disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative descriptive approach was used. Purposive sampling, data collection and qualitative content analysis were undertaken simultaneously. Data were collected from nine participants, four parents and five professionals over 4 months through audio or video-recorded, semi-structured, open-ended interviews.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>An overarching theme ‘Maximising Communication through AAC’ emerged, capturing participants' unanimous agreement that their shared goal was to optimise individuals' communication through AAC. This was influenced by three themes: ‘Developing a Communicative Environment’, ‘The Act of Communicating; Attempting to Realise the Individuals' Ability’ and ‘Living with Uncertainty’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>These findings contribute to enhancing understanding of AAC use with individuals with severe/profound intellectual disability and their communication partners.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"74-86"},"PeriodicalIF":1.2,"publicationDate":"2024-09-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12620","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446926","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}
Children 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.
Methods
We 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.
Findings
A 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.
Conclusions
Quality 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":"10.1111/bld.12619","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Children 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>We 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>A 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Quality 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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"61-73"},"PeriodicalIF":1.2,"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}
The present study investigated staff perspectives on supporting individuals with intellectual disabilities with mental health relapse prevention.
Methods
Eight 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.
Findings
Participants 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.
Conclusion
This 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":"10.1111/bld.12617","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The present study investigated staff perspectives on supporting individuals with intellectual disabilities with mental health relapse prevention.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Eight 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Participants 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>This 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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"51-60"},"PeriodicalIF":1.2,"publicationDate":"2024-09-09","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
Background
The 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.
Methods
A 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.
Findings
The "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.
Conclusions
The 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":"10.1111/bld.12616","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The \"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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The 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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"43-50"},"PeriodicalIF":1.2,"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
Background
People 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.
Methods
This 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.
Findings
There 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’.
Conclusions
People 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":"10.1111/bld.12614","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>There 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’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>People 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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"32-42"},"PeriodicalIF":1.2,"publicationDate":"2024-08-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12614","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":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"In search of education, participation and inclusion: Embrace the uncertain By \u0000 Jonathan Rix, Abingdon: Routledge. 2024. pp. 204. £28.79","authors":"Melanie Nind","doi":"10.1111/bld.12615","DOIUrl":"10.1111/bld.12615","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"221-222"},"PeriodicalIF":1.2,"publicationDate":"2024-08-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141927473","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
Background
Developments 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.
Methods
A 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.
Findings
The 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.
Conclusion
Addressing 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":"10.1111/bld.12613","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Developments 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The 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.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Addressing 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.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"17-31"},"PeriodicalIF":1.2,"publicationDate":"2024-07-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12613","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":"OA","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}
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