Izaskun Álvarez-Aguado, Vanessa Vega Córdova, Miguel Roselló-Peñaloza, Félix González-Carrasco, Maryam Farhang, Karla Campaña Vilo, Herbert Spencer, Felipe Muñoz La Rivera, Leyre Álvarez Aguado
Background
Women with intellectual disabilities confront distinct challenges as they age, compounded by cognitive and adaptive constraints. These challenges encompass heightened health risks, barriers to social support and susceptibility to violence, underscoring the critical role of self-determination in enhancing their quality of life.
Method
This quantitative study utilised a scale based on the Functional Model of Self-Determination to assess self-determination levels in 218 Chilean women aged 45 to 80 with intellectual disabilities. The research also explored potential personal and environmental factors influencing these levels.
Findings
Employed participants and those in supportive family environments demonstrated higher self-determination levels. Moreover, women without mental health issues exhibited advanced skills in self-regulation, empowerment and self-realisation. Significant disparities were noted based on varying levels of intellectual disability, types of support received and socioeconomic status, highlighting the necessity for tailored and diversified support systems.
Conclusion
Developing personalised support programs that address individual and contextual differences is crucial. Despite limitations, this study emphasises the urgency for inclusive public policies aimed at eliminating socioeconomic and cultural barriers, thereby fostering environments conducive to community engagement and autonomous decision-making.
{"title":"Self-Determination Skills in Ageing Women With Intellectual Disabilities","authors":"Izaskun Álvarez-Aguado, Vanessa Vega Córdova, Miguel Roselló-Peñaloza, Félix González-Carrasco, Maryam Farhang, Karla Campaña Vilo, Herbert Spencer, Felipe Muñoz La Rivera, Leyre Álvarez Aguado","doi":"10.1111/bld.12630","DOIUrl":"https://doi.org/10.1111/bld.12630","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Women with intellectual disabilities confront distinct challenges as they age, compounded by cognitive and adaptive constraints. These challenges encompass heightened health risks, barriers to social support and susceptibility to violence, underscoring the critical role of self-determination in enhancing their quality of life.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This quantitative study utilised a scale based on the Functional Model of Self-Determination to assess self-determination levels in 218 Chilean women aged 45 to 80 with intellectual disabilities. The research also explored potential personal and environmental factors influencing these levels.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Employed participants and those in supportive family environments demonstrated higher self-determination levels. Moreover, women without mental health issues exhibited advanced skills in self-regulation, empowerment and self-realisation. Significant disparities were noted based on varying levels of intellectual disability, types of support received and socioeconomic status, highlighting the necessity for tailored and diversified support systems.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Developing personalised support programs that address individual and contextual differences is crucial. Despite limitations, this study emphasises the urgency for inclusive public policies aimed at eliminating socioeconomic and cultural barriers, thereby fostering environments conducive to community engagement and autonomous decision-making.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"248-258"},"PeriodicalIF":1.2,"publicationDate":"2024-11-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091296","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}
Jennifer Threlfall, Hannah Jobling, Katherine Graham
Background
Parents with learning disabilities are often assessed as lacking the capacity to parent effectively; however, ecological models of parenting indicate that support from informal social networks (ISNs) can help them successfully maintain family life. This systematic review examined evidence regarding (1) parent and child outcomes associated with support from ISNs and (2) perceptions of the roles of ISNs for parents with learning disabilities.
Methods
Peer-reviewed quantitative and qualitative literature was identified through a search of six databases, and a narrative synthesis was subsequently conducted.
Results
Twenty-six articles were included in the review. Findings of the quantitative synthesis provided preliminary evidence for a positive relationship between support from ISNs and parental mental health, positive parenting practices and child wellbeing. The qualitative synthesis indicated that parents benefited from ISNs through their provision of practical and emotional support and learning skills. Network characteristics that divided supportive from unsupportive members were also identified.
Conclusion
Parents with learning disabilities receive the same positive outcomes from ISNs as other parents, although unique contextual and social challenges may affect their experiences. Future research should explore interventions to build ISNs of parents with learning disabilities that acknowledge their existing strengths as parents and community members.
{"title":"The Role of Informal Social Networks in Supporting Parents With Learning Disabilities: A Systematic Review","authors":"Jennifer Threlfall, Hannah Jobling, Katherine Graham","doi":"10.1111/bld.12628","DOIUrl":"https://doi.org/10.1111/bld.12628","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Parents with learning disabilities are often assessed as lacking the capacity to parent effectively; however, ecological models of parenting indicate that support from informal social networks (ISNs) can help them successfully maintain family life. This systematic review examined evidence regarding (1) parent and child outcomes associated with support from ISNs and (2) perceptions of the roles of ISNs for parents with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Peer-reviewed quantitative and qualitative literature was identified through a search of six databases, and a narrative synthesis was subsequently conducted.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Twenty-six articles were included in the review. Findings of the quantitative synthesis provided preliminary evidence for a positive relationship between support from ISNs and parental mental health, positive parenting practices and child wellbeing. The qualitative synthesis indicated that parents benefited from ISNs through their provision of practical and emotional support and learning skills. Network characteristics that divided supportive from unsupportive members were also identified.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Parents with learning disabilities receive the same positive outcomes from ISNs as other parents, although unique contextual and social challenges may affect their experiences. Future research should explore interventions to build ISNs of parents with learning disabilities that acknowledge their existing strengths as parents and community members.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 2","pages":"230-247"},"PeriodicalIF":1.2,"publicationDate":"2024-11-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12628","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144091364","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}
Third-level education is a relatively new opportunity for people with intellectual disabilities. The development of third-level educational opportunities for this population rests on understanding their experiences and suggestions for programme development and improvement. The aim of this study is to establish how inclusive third-level education is experienced by people with intellectual disabilities.
Method
A scoping review was conducted using Arksey and O'Malley's framework of peer-reviewed empirical research published between 2002 and 2023 that reported on the experience of third-level education for people with intellectual disabilities.
Findings
People with intellectual disabilities are engaging in third-level education courses within University Campuses. They consider such programmes as opportunities to meet aspirations and to enable independent living especially through employment. Their experiences are influenced by supportive staff, initiatives and challenges and they have opinions on how to improve third-level programmes.
Conclusions
People with intellectual disabilities value and embrace the opportunities to engage in third-level education. Their experience is mixed with positive personal outcomes and challenges. Future research is needed to examine effective approaches to overcoming challenges and finding ways to develop programmes that meet the needs of adults with intellectual disabilities.
{"title":"How People With an Intellectual Disability Experience Inclusive Third-Level Education: A Scoping Review","authors":"Therese Hennessy, Jennifer McMahon, Owen Doody","doi":"10.1111/bld.12626","DOIUrl":"https://doi.org/10.1111/bld.12626","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Third-level education is a relatively new opportunity for people with intellectual disabilities. The development of third-level educational opportunities for this population rests on understanding their experiences and suggestions for programme development and improvement. The aim of this study is to establish how inclusive third-level education is experienced by people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review was conducted using Arksey and O'Malley's framework of peer-reviewed empirical research published between 2002 and 2023 that reported on the experience of third-level education for people with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>People with intellectual disabilities are engaging in third-level education courses within University Campuses. They consider such programmes as opportunities to meet aspirations and to enable independent living especially through employment. Their experiences are influenced by supportive staff, initiatives and challenges and they have opinions on how to improve third-level programmes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>People with intellectual disabilities value and embrace the opportunities to engage in third-level education. Their experience is mixed with positive personal outcomes and challenges. Future research is needed to examine effective approaches to overcoming challenges and finding ways to develop programmes that meet the needs of adults with intellectual disabilities.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"158-191"},"PeriodicalIF":1.2,"publicationDate":"2024-11-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12626","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446826","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}
Geraldine Boland, Anne-Marie Potter, Eilin de Paor, Suzanne Guerin
Background
The social networks of adults with intellectual disabilities are often small and may be limited to family, paid staff and others with disabilities. This study explored the social inclusion of six individuals who joined mainstream leisure clubs or became local volunteers.
Method
This qualitative intervention study provided structured support and education to local connectors, existing members of clubs/organisations who provided one-to-one support to new members with intellectual disabilities. After 4 months, qualitative interviews were conducted to explore the experiences of the six participants with disability. Data were analysed using content analysis.
Findings
Individuals joining mainstream leisure clubs or volunteering, with natural supporters, creates opportunities for making new acquaintances and expanding social networks. Finding local connectors and opportunities for shared volunteering or leisure activities based on personal goals/interests are key to individuals forming new acquaintances close to where they live. Barriers and facilitators to participation are identified.
Conclusions
Adults with intellectual disabilities becoming volunteers or joining mainstream leisure clubs has the potential to lead to enhanced opportunities for social inclusion in their neighbourhoods. Implications for policy and practice are examined. Recommendations for further research are explored. A Valued Social Role Checklist developed from this study offers a tool when sourcing social roles.
{"title":"Social Inclusion Through Making Neighbourhood Connections: Experiences of Older Adults With Intellectual Disabilities of Local Volunteering and Leisure, Facilitated by Local Connectors","authors":"Geraldine Boland, Anne-Marie Potter, Eilin de Paor, Suzanne Guerin","doi":"10.1111/bld.12624","DOIUrl":"https://doi.org/10.1111/bld.12624","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The social networks of adults with intellectual disabilities are often small and may be limited to family, paid staff and others with disabilities. This study explored the social inclusion of six individuals who joined mainstream leisure clubs or became local volunteers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This qualitative intervention study provided structured support and education to local connectors, existing members of clubs/organisations who provided one-to-one support to new members with intellectual disabilities. After 4 months, qualitative interviews were conducted to explore the experiences of the six participants with disability. Data were analysed using content analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Individuals joining mainstream leisure clubs or volunteering, with natural supporters, creates opportunities for making new acquaintances and expanding social networks. Finding local connectors and opportunities for shared volunteering or leisure activities based on personal goals/interests are key to individuals forming new acquaintances close to where they live. Barriers and facilitators to participation are identified.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Adults with intellectual disabilities becoming volunteers or joining mainstream leisure clubs has the potential to lead to enhanced opportunities for social inclusion in their neighbourhoods. Implications for policy and practice are examined. Recommendations for further research are explored. A Valued Social Role Checklist developed from this study offers a tool when sourcing social roles.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"145-157"},"PeriodicalIF":1.2,"publicationDate":"2024-10-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12624","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143447090","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}
Eileen Kelleher, Maria Caples, Teresa Wills, Anne-Marie Martin
Background
Individuals with intellectual disabilities often require various supports in their everyday lives. Many access both acute and intellectual disability services depending on their needs. Previous research has highlighted suboptimal experiences of care provided in acute services. Joint working between both services has been recognised as a measure of improving healthcare for this group. Although there is some evidence regarding this issue from the perspective of acute service providers, further research is required to understand the perspective of intellectual disability service providers.
Methods
Ten nurses working in various roles in intellectual disability services across Ireland took part in semistructured interviews. The data were analysed using thematic analysis.
Findings
Issues with inter-service communication and insufficient policies, protocols and pathways were found to negatively impact joint working. Acute services seemed to have a limited understanding of the role and capacity of intellectual disability services. Acute services do not always identify the individual needs of the people in their care. Despite this, there were examples of joint working taking place that benefited those with intellectual disabilities.
Conclusions
Joint working needs to include improving communication between both services, co-developing policies, protocols and pathways and appointing acute care liaison nurses.
{"title":"Healthcare for People With Intellectual Disabilities: An Exploration of Intellectual Disability Service Providers' Experiences of Joint Working With Acute Service Providers When People With Intellectual Disabilities Access Healthcare in Acute Services","authors":"Eileen Kelleher, Maria Caples, Teresa Wills, Anne-Marie Martin","doi":"10.1111/bld.12625","DOIUrl":"https://doi.org/10.1111/bld.12625","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Individuals with intellectual disabilities often require various supports in their everyday lives. Many access both acute and intellectual disability services depending on their needs. Previous research has highlighted suboptimal experiences of care provided in acute services. Joint working between both services has been recognised as a measure of improving healthcare for this group. Although there is some evidence regarding this issue from the perspective of acute service providers, further research is required to understand the perspective of intellectual disability service providers.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Ten nurses working in various roles in intellectual disability services across Ireland took part in semistructured interviews. The data were analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Issues with inter-service communication and insufficient policies, protocols and pathways were found to negatively impact joint working. Acute services seemed to have a limited understanding of the role and capacity of intellectual disability services. Acute services do not always identify the individual needs of the people in their care. Despite this, there were examples of joint working taking place that benefited those with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Joint working needs to include improving communication between both services, co-developing policies, protocols and pathways and appointing acute care liaison nurses.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"134-144"},"PeriodicalIF":1.2,"publicationDate":"2024-10-10","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12625","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446781","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>Universities are deeply rooted in a tradition of exclusivity. However, for the past several years, they have been called upon to develop in an inclusive and socially responsible manner that does justice to the plurality of society. This has led to the emergence of diverse practices and projects around the world that are intended to open up universities to previously excluded and marginalised groups of people. At the same time, findings from postcolonial studies, such as Spivak's discussions on the topic of representation, show that such processes of change must always be accompanied by critical reflection. This article offers a reflexive analysis of two university projects—one in Iceland and one in Germany—where people with learning difficulties are employed as academic staff, engaged in both teaching and research.</p> </section> <section> <h3> Methods</h3> <p>This article is a result of a collaboration between three nondisabled lecturers and three lecturers with learning disabilities, co-written across three languages—German, Icelandic and English. The authors worked together to explore theories of representation, ensuring that their discussions and writing were accessible to all members, regardless of language or disability. The article discusses two projects from Iceland and Germany.</p> </section> <section> <h3> Findings</h3> <p>The article shows that inclusive higher education developments are necessary. The projects presented in the article have created work opportunities for people with learning disabilities in the previously exclusive setting of the university. The article provides descriptions of the exemplary life paths of the three lecturers with learning disabilities who co-authored this article. They have had to navigate the precarious balance between being reduced to mere representatives of their disability and contributing valuable academic knowledge. The findings suggest that an inclusive university can foster equitable academic environments, contributing to the transformation of higher education by reflecting diverse viewpoints and experiences.</p> </section> <section> <h3> Conclusions</h3> <p>Initiatives in Iceland and Germany highlight significant progress towards more inclusive universities by integrating individuals with learning disabilities into academic roles, challenging traditional power dynamics. Spivak's (2008) concept of representation emphasises the need to include marginalised voices in academic discourse, ensuring they are genuinely reflected. While these efforts are crucial, c
{"title":"The Diversity of Voices in Universities: A Critical Reflection on Representation Based on Two University Projects in Iceland and Germany","authors":"Nico Leonhardt, Kristín Björnsdóttir, Anne Goldbach, Ragnar Smára, Steffen Martick, Beate Schlothauer","doi":"10.1111/bld.12623","DOIUrl":"https://doi.org/10.1111/bld.12623","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Universities are deeply rooted in a tradition of exclusivity. However, for the past several years, they have been called upon to develop in an inclusive and socially responsible manner that does justice to the plurality of society. This has led to the emergence of diverse practices and projects around the world that are intended to open up universities to previously excluded and marginalised groups of people. At the same time, findings from postcolonial studies, such as Spivak's discussions on the topic of representation, show that such processes of change must always be accompanied by critical reflection. This article offers a reflexive analysis of two university projects—one in Iceland and one in Germany—where people with learning difficulties are employed as academic staff, engaged in both teaching and research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This article is a result of a collaboration between three nondisabled lecturers and three lecturers with learning disabilities, co-written across three languages—German, Icelandic and English. The authors worked together to explore theories of representation, ensuring that their discussions and writing were accessible to all members, regardless of language or disability. The article discusses two projects from Iceland and Germany.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The article shows that inclusive higher education developments are necessary. The projects presented in the article have created work opportunities for people with learning disabilities in the previously exclusive setting of the university. The article provides descriptions of the exemplary life paths of the three lecturers with learning disabilities who co-authored this article. They have had to navigate the precarious balance between being reduced to mere representatives of their disability and contributing valuable academic knowledge. The findings suggest that an inclusive university can foster equitable academic environments, contributing to the transformation of higher education by reflecting diverse viewpoints and experiences.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Initiatives in Iceland and Germany highlight significant progress towards more inclusive universities by integrating individuals with learning disabilities into academic roles, challenging traditional power dynamics. Spivak's (2008) concept of representation emphasises the need to include marginalised voices in academic discourse, ensuring they are genuinely reflected. While these efforts are crucial, c","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"124-133"},"PeriodicalIF":1.2,"publicationDate":"2024-10-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12623","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446682","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}
Wieneke Penninga, Alexander H. C. Hendriks, Hedwig J. A. van Bakel, Petri J. C. M. Embregts
Background
Initiating meaningful moments of interaction with people with profound intellectual disabilities can prove to be difficult for support staff. Exploring the behaviour of support staff that precedes the initiations of behaviour by people with profound intellectual disabilities helps to shed light upon the potential facilitating effects of staff behaviour.
Methods
Three meaningful moments of interaction between support staff and people with profound intellectual disabilities that were recorded were then microanalytically coded, along with the initial onset of these moments. Each behaviour initiated by people with profound intellectual disabilities was examined to see what specific behaviour by the support staff began precedingly.
Findings
The most frequently displayed ‘staff–client’ behavioural sequences were ‘looking’, ‘moving with head’, ‘moving with arms’ or ‘vocalisation’ of support staff followed by the person with profound intellectual disabilities ‘moving with head’, the staff member ‘moving with arms’ followed by the person with profound intellectual disabilities ‘moving with arms’ and the staff member ‘touching’ followed by the person with profound intellectual disabilities ‘vocalising’. These behavioural sequences occurred less frequently during meaningful moments of interaction in comparison to their onset.
Conclusions
It is important that support staff are cognisant of all the (subtle) behavioural changes in people with profound intellectual disabilities (especially movements with their head) to discern potential behavioural responses. Moreover, they should be cognisant of their own behaviour, insofar as the conscious use of behaviour may facilitate the development of meaningful interactions.
{"title":"Predecessors of Behavioural Initiatives by People With Profound Intellectual Disabilities During Their Interactions With Support Staff: An Exploratory Microanalytical Analysis","authors":"Wieneke Penninga, Alexander H. C. Hendriks, Hedwig J. A. van Bakel, Petri J. C. M. Embregts","doi":"10.1111/bld.12622","DOIUrl":"https://doi.org/10.1111/bld.12622","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Initiating meaningful moments of interaction with people with profound intellectual disabilities can prove to be difficult for support staff. Exploring the behaviour of support staff that precedes the initiations of behaviour by people with profound intellectual disabilities helps to shed light upon the potential facilitating effects of staff behaviour.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Three meaningful moments of interaction between support staff and people with profound intellectual disabilities that were recorded were then microanalytically coded, along with the initial onset of these moments. Each behaviour initiated by people with profound intellectual disabilities was examined to see what specific behaviour by the support staff began precedingly.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The most frequently displayed ‘staff–client’ behavioural sequences were ‘looking’, ‘moving with head’, ‘moving with arms’ or ‘vocalisation’ of support staff followed by the person with profound intellectual disabilities ‘moving with head’, the staff member ‘moving with arms’ followed by the person with profound intellectual disabilities ‘moving with arms’ and the staff member ‘touching’ followed by the person with profound intellectual disabilities ‘vocalising’. These behavioural sequences occurred less frequently during meaningful moments of interaction in comparison to their onset.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>It is important that support staff are cognisant of all the (subtle) behavioural changes in people with profound intellectual disabilities (especially movements with their head) to discern potential behavioural responses. Moreover, they should be cognisant of their own behaviour, insofar as the conscious use of behaviour may facilitate the development of meaningful interactions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"53 1","pages":"113-123"},"PeriodicalIF":1.2,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12622","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143446829","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}
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.
在怀孕期间，一些智力残疾妇女遇到了一些挑战，一些为她们提供支持的助产士缺乏提供最佳护理的知识。本系统综述探讨了智力残疾妇女在怀孕期间的经历和助产士提供护理的经历。方法检索PubMed、CINHAL、PsycINFO和Web of Science 4个数据库，采用CASP对结果进行质量评价。入选论文发表时间为2012年1月至2022年12月，分别来自英国、瑞典、加拿大和爱尔兰。结果共纳入8项研究：5项研究考察了智障孕妇的经历，1项研究考察了助产士的护理经历，2项研究对两组进行了分析。妇女的主要主题包括宣布怀孕、参与照顾孩子以及担心失去孩子的监护权。助产士们表示，她们还没有做好准备，需要额外的支持。两组人都认识到改善教育和无障碍交流的必要性。结论本综述所涉及的智力残疾妇女在产前信息方面需要加强教育和帮助。纳入研究的助产士认为，她们在支持智障妇女方面准备不足：她们缺乏专业培训，需要在健康教育和沟通技巧方面获得额外支持。
{"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}
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