Service culture refers to the practices, views and values within service organisations. Developing positive cultures has been thought imperative to improving social care, though day services and their cultures remain an under-researched area. For many autistic people with profound learning disabilities, day services are the sites at which they orientate their Monday–Friday adult lives and so service cultures are fundamental to the way they experience adulthood. It was thus the purpose of this study to explore day service culture through the perspectives and experiences of this group.
Methods
This study took a phenomenological approach involving extended participatory observations with an autistic person with profound learning disabilities at their day service, as well as broader ethnographic work within this context. Data was analysed through theory-led thematic analysis.
Findings
The study found that autistic people with profound learning disabilities contribute their customs and values to service culture in everyday life and that space, time and place were important in this endeavour. It highlighted how these customs and values could be adopted or challenged by the service, its staff and their established culture.
Conclusion
It is argued that positive service cultures are ones in which day services acknowledge and respond to the views and values of autistic people with profound learning disabilities. A potential framework is discussed to support services with this aim.
{"title":"Day service cultures from the perspectives of autistic people with profound learning disabilities","authors":"Ned Redmore","doi":"10.1111/bld.12545","DOIUrl":"10.1111/bld.12545","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Service culture refers to the practices, views and values within service organisations. Developing positive cultures has been thought imperative to improving social care, though day services and their cultures remain an under-researched area. For many autistic people with profound learning disabilities, day services are the sites at which they orientate their Monday–Friday adult lives and so service cultures are fundamental to the way they experience adulthood. It was thus the purpose of this study to explore day service culture through the perspectives and experiences of this group.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This study took a phenomenological approach involving extended participatory observations with an autistic person with profound learning disabilities at their day service, as well as broader ethnographic work within this context. Data was analysed through theory-led thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The study found that autistic people with profound learning disabilities contribute their customs and values to service culture in everyday life and that space, time and place were important in this endeavour. It highlighted how these customs and values could be adopted or challenged by the service, its staff and their established culture.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>It is argued that positive service cultures are ones in which day services acknowledge and respond to the views and values of autistic people with profound learning disabilities. A potential framework is discussed to support services with this aim.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 1","pages":"54-65"},"PeriodicalIF":1.5,"publicationDate":"2023-07-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12545","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46536749","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}
Jenny Samuelsson, Emil Holmer, Jakob Å. Johnels, Lisa Palmqvist, Mikael Heimann, Monica Reichenberg, Gunilla Thunberg
Background
It can be challenging for people with intellectual disabilities to convey their thoughts and opinions because of cognitive, speech and language impairments. Consequently, facilitating their ability to communicate using augmentative and alternative communication methods is essential. The picture-based framework Talking Mats has been applied in many studies and has been shown to be successful in facilitating communication and soliciting views from individuals with intellectual disabilities and communication difficulties. The aim of this study was to describe the views of students with intellectual disabilities and communication difficulties on speech and reading activities and to examine whether valence scores (from negative to positive) on these views were associated with performance on tests of their corresponding abilities.
Methods
This is a cross-sectional quantitative survey study. A group of 111 students with intellectual disabilities and communication difficulties aged 7–21 were interviewed about their speech and reading activities using the visual framework Talking Mats. Their answers were scored on a three-grade like-dislike continuum and were correlated with their results on adapted tests of the corresponding abilities.
Findings
The students expressed their views on speech and reading activities. The scored views on speech were positively associated with speech production, and the scored views on reading activities were positively related to reading ability. This suggests that their opinions as expressed through Talking Mats were consistent and reliable.
Conclusions
Most students with intellectual disabilities and communicative difficulties can reliably express their own opinions of their abilities when they are provided with a clear visual structure and pictorial support, such as Talking Mats. In this study, this was seen for students with a mild intellectual disability from age seven and onwards and for students with a more severe intellectual disability from 12 years of age and onwards.
{"title":"My point of view: Students with intellectual and communicative disabilities express their views on speech and reading using Talking Mats","authors":"Jenny Samuelsson, Emil Holmer, Jakob Å. Johnels, Lisa Palmqvist, Mikael Heimann, Monica Reichenberg, Gunilla Thunberg","doi":"10.1111/bld.12543","DOIUrl":"10.1111/bld.12543","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>It can be challenging for people with intellectual disabilities to convey their thoughts and opinions because of cognitive, speech and language impairments. Consequently, facilitating their ability to communicate using augmentative and alternative communication methods is essential. The picture-based framework Talking Mats has been applied in many studies and has been shown to be successful in facilitating communication and soliciting views from individuals with intellectual disabilities and communication difficulties. The aim of this study was to describe the views of students with intellectual disabilities and communication difficulties on speech and reading activities and to examine whether valence scores (from negative to positive) on these views were associated with performance on tests of their corresponding abilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This is a cross-sectional quantitative survey study. A group of 111 students with intellectual disabilities and communication difficulties aged 7–21 were interviewed about their speech and reading activities using the visual framework Talking Mats. Their answers were scored on a three-grade like-dislike continuum and were correlated with their results on adapted tests of the corresponding abilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The students expressed their views on speech and reading activities. The scored views on speech were positively associated with speech production, and the scored views on reading activities were positively related to reading ability. This suggests that their opinions as expressed through Talking Mats were consistent and reliable.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Most students with intellectual disabilities and communicative difficulties can reliably express their own opinions of their abilities when they are provided with a clear visual structure and pictorial support, such as Talking Mats. In this study, this was seen for students with a mild intellectual disability from age seven and onwards and for students with a more severe intellectual disability from 12 years of age and onwards.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 1","pages":"23-35"},"PeriodicalIF":1.5,"publicationDate":"2023-06-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12543","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47356069","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}
Ryan Holmes, Lucy Kearney, Sheetal Gopal, Inderpal Daddi
Background
The STOMP agenda (Stopping Over-Medication of People with learning disabilities, autism, or both) drew focus to individuals with a diagnosis of a learning disability being prescribed psychotropic medication to manage ‘behaviours that challenge’. The following study is an audit of two community learning disability services in the London boroughs of Westminster and Kensington and Chelsea for compliance with national guidance on the use of medication in this population, the impact of the COVID-19 pandemic, and equality, diversity and anti-racism.
Method
Routinely collected data were audited relating to clients identified in each service, totalling 54 participants. Data were audited against five standards: minimum effective dose, medication reviews, alternative multidisciplinary input, the impact of the COVID-19 pandemic and equality, diversity and anti–racism. Comparisons were made to the overall caseload (N = 365) where appropriate.
Results
Evidence demonstrated a greater risk of receiving psychotropic medication to manage behaviours that challenge for service users from racialised backgrounds, further evidencing institutional and/or individualised racism within practice for this population. Prescriptions also increased in dosage during the COVID-19 pandemic exacerbated by insufficient provision of alternative input and regular multi-disciplinary review as required by national guidance.
Conclusions
Community learning disability teams require dedicated, co-produced STOMP pathways to review those at risk of over-medication. Additional research is required to explore individual and systemic factors contributing to ethnic disparities in medication prescription for behaviours that challenge among people with learning disabilities. Further recommendations are considered around developing data collection, service user involvement, and future directions.
{"title":"‘Lots of Black people are on meds because they're seen as aggressive’: STOMP, COVID-19 and anti-racism in community learning disability services","authors":"Ryan Holmes, Lucy Kearney, Sheetal Gopal, Inderpal Daddi","doi":"10.1111/bld.12541","DOIUrl":"10.1111/bld.12541","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>The STOMP agenda (Stopping Over-Medication of People with learning disabilities, autism, or both) drew focus to individuals with a diagnosis of a learning disability being prescribed psychotropic medication to manage ‘behaviours that challenge’. The following study is an audit of two community learning disability services in the London boroughs of Westminster and Kensington and Chelsea for compliance with national guidance on the use of medication in this population, the impact of the COVID-19 pandemic, and equality, diversity and anti-racism.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>Routinely collected data were audited relating to clients identified in each service, totalling 54 participants. Data were audited against five standards: minimum effective dose, medication reviews, alternative multidisciplinary input, the impact of the COVID-19 pandemic and equality, diversity and anti–racism. Comparisons were made to the overall caseload (<i>N</i> = 365) where appropriate.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Evidence demonstrated a greater risk of receiving psychotropic medication to manage behaviours that challenge for service users from racialised backgrounds, further evidencing institutional and/or individualised racism within practice for this population. Prescriptions also increased in dosage during the COVID-19 pandemic exacerbated by insufficient provision of alternative input and regular multi-disciplinary review as required by national guidance.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Community learning disability teams require dedicated, co-produced STOMP pathways to review those at risk of over-medication. Additional research is required to explore individual and systemic factors contributing to ethnic disparities in medication prescription for behaviours that challenge among people with learning disabilities. Further recommendations are considered around developing data collection, service user involvement, and future directions.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 1","pages":"1-10"},"PeriodicalIF":1.5,"publicationDate":"2023-06-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12541","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43992614","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}
As practice leaders, frontline managers observe staff working, provide feedback and use organisational structures to improve staff skills and focus on service-user quality of life. This qualitative study explored the experiences and barriers for frontline managers providing practice leadership to staff in community services for adults with learning disabilities.
Methods
Audio-recorded data was collected during semi-structured interviews with 14 frontline managers, transcribed and analysed using thematic analysis.
Findings
Three themes emerged reflecting participants' experiences of barriers to their work as practice leaders, focusing on stable staff teams, ‘admin’ and paperwork, and developing staff, each with sub-themes.
Conclusions
Results reflect existing research and suggest new challenges relating to progress in personalisation. Frontline managers experience barriers to providing practice leadership due to contextual and individual factors described in the themes. Successful implementation of policy initiatives, for example, Transforming Care requires further research on the impact, development and provision of practice leadership for support staff. should recognise these factors influencing frontline managers and ensure suitable policies and training to support practice leadership.
{"title":"Contextual and individual barriers to providing practice leadership by frontline managers in community services for adults with intellectual disabilities: A qualitative study","authors":"Roy Deveau, Georgina Rickard","doi":"10.1111/bld.12542","DOIUrl":"10.1111/bld.12542","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>As practice leaders, frontline managers observe staff working, provide feedback and use organisational structures to improve staff skills and focus on service-user quality of life. This qualitative study explored the experiences and barriers for frontline managers providing practice leadership to staff in community services for adults with learning disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Audio-recorded data was collected during semi-structured interviews with 14 frontline managers, transcribed and analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Three themes emerged reflecting participants' experiences of barriers to their work as practice leaders, focusing on stable staff teams, ‘admin’ and paperwork, and developing staff, each with sub-themes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Results reflect existing research and suggest new challenges relating to progress in personalisation. Frontline managers experience barriers to providing practice leadership due to contextual and individual factors described in the themes. Successful implementation of policy initiatives, for example, Transforming Care requires further research on the impact, development and provision of practice leadership for support staff. should recognise these factors influencing frontline managers and ensure suitable policies and training to support practice leadership.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 1","pages":"11-22"},"PeriodicalIF":1.5,"publicationDate":"2023-06-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44246638","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}
People with learning disabilities experience bereavement in the same emotionally overwhelming way as the general population. The Dual-Process Model of grief is characterised by the oscillation between Loss-Orientation and Restoration-Orientation. These processes involve experiencing and accepting the emotional pain of grief (Loss-Orientation) and adapting to a new world without the deceased person (Restoration-Orientation).
Methods
A single case study sought to explore how Cognitive Behavioural Therapy (CBT) and Compassion Focused Therapy (CFT) principles can be used to support people with a learning disability to navigate the grieving process, as understood by the Dual-Process Model.
Findings
This case study describes CBT formulation and assessment, and implementation of CBT and CFT strategies in a man with Williams syndrome, demonstrating improvements in mood, and a greater ability to turn towards suffering and experience both Loss- and Restoration-Oriented processing.
Conclusion
CBT and CFT may be useful and appropriate modalities for clinicians to consider when supporting people with a learning disability to navigate loss, as understood through the Dual Process Model.
{"title":"Using cognitive and behavioural strategies to support a man with mild–moderate learning disabilities navigate the dual process model of grief: A clinical case study","authors":"Luis Calabria, Claire Cheswick","doi":"10.1111/bld.12540","DOIUrl":"10.1111/bld.12540","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with learning disabilities experience bereavement in the same emotionally overwhelming way as the general population. The Dual-Process Model of grief is characterised by the oscillation between <i>Loss-Orientation</i> and <i>Restoration-Orientation</i>. These processes involve experiencing and accepting the emotional pain of grief (<i>Loss-Orientation</i>) and adapting to a new world without the deceased person (<i>Restoration-Orientation</i>).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A single case study sought to explore how Cognitive Behavioural Therapy (CBT) and Compassion Focused Therapy (CFT) principles can be used to support people with a learning disability to navigate the grieving process, as understood by the Dual-Process Model.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>This case study describes CBT formulation and assessment, and implementation of CBT and CFT strategies in a man with Williams syndrome, demonstrating improvements in mood, and a greater ability to turn towards suffering and experience both <i>Loss</i>- and <i>Restoration-Oriented</i> processing.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>CBT and CFT may be useful and appropriate modalities for clinicians to consider when supporting people with a learning disability to navigate loss, as understood through the Dual Process Model.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"597-607"},"PeriodicalIF":1.5,"publicationDate":"2023-06-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43348748","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}
Social media use continues to grow, and it offers an important way for adults with intellectual disabilities to feel socially included and to communicate with others.
Aim
This study aimed to establish the state of knowledge about social media use among adults with intellectual disabilities, their experiences and its impact.
Method
A scoping review was conducted of peer-reviewed literature published between 2000 and 2021 that reported empirical research on social media use, experiences, training and outcomes for adults with intellectual disabilities.
Findings
Adults with intellectual disabilities use social media platforms and experience a range of positive outcomes including feeling more included and valued. Some of the negative impacts included bullying and exploitation. The high cost of technology and some elements of design sometimes make social media inaccessible.
Conclusions
The studies included provided evidence about the experience of using social media from adults with intellectual disabilities and some perspectives of family members and paid supporters. Future research is needed to examine effective approaches to overcoming barriers to access and ways to manage some of the negative impacts of engagement in order to inform policy and practice.
{"title":"Adults with intellectual disabilities as users of social media: A scoping review","authors":"Sian Anderson, Tal Araten-Bergman, Gillian Steel","doi":"10.1111/bld.12534","DOIUrl":"10.1111/bld.12534","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Social media use continues to grow, and it offers an important way for adults with intellectual disabilities to feel socially included and to communicate with others.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Aim</h3>\u0000 \u0000 <p>This study aimed to establish the state of knowledge about social media use among adults with intellectual disabilities, their experiences and its impact.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A scoping review was conducted of peer-reviewed literature published between 2000 and 2021 that reported empirical research on social media use, experiences, training and outcomes for adults with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Adults with intellectual disabilities use social media platforms and experience a range of positive outcomes including feeling more included and valued. Some of the negative impacts included bullying and exploitation. The high cost of technology and some elements of design sometimes make social media inaccessible.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The studies included provided evidence about the experience of using social media from adults with intellectual disabilities and some perspectives of family members and paid supporters. Future research is needed to examine effective approaches to overcoming barriers to access and ways to manage some of the negative impacts of engagement in order to inform policy and practice.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"544-564"},"PeriodicalIF":1.5,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47854882","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":"Disability hate speech: Social, cultural and political contexts By Mark Sherry, Terje Olsen, Janikke Solstad Vedeler, and John Eriksen Abingdon (Eds.), Routledge. 2021. pp. 268","authors":"David Wilkin","doi":"10.1111/bld.12539","DOIUrl":"10.1111/bld.12539","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"609-610"},"PeriodicalIF":1.5,"publicationDate":"2023-05-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46872557","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}
Damien Brennan, Maureen D'Eath, Philip McCallion, Mary McCarron
Background
As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well-being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) provides a unique insight into the health and well-being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS-TILDA Carer's Study.
Methods
The IDS-TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3-yearly cycle. The family carers complete a self-administered, mixed-methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS.
Findings
In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard.
Conclusions
There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well-being as they provide care for an increasingly ageing sibling.
{"title":"Health and well-being of sibling carers of adults with an intellectual disability in Ireland: Four waves of data","authors":"Damien Brennan, Maureen D'Eath, Philip McCallion, Mary McCarron","doi":"10.1111/bld.12532","DOIUrl":"10.1111/bld.12532","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>As the life expectancy of people with intellectual disability increases, they may now outlive their parents or their parents' ability to continue to care. Siblings of adults with intellectual disability often succeed their parents as primary carers. Little is known about the health and well-being of this important cohort of carers who will be both caring for and ageing alongside their brother or sister with intellectual disability. The Carer's Study within The Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) provides a unique insight into the health and well-being of family carers of older adults with intellectual disability including sibling carers in Ireland. This article reports on the findings from waves 1, 2, 3 and 4 of the IDS-TILDA Carer's Study.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The IDS-TILDA Carer's Study surveys family carers of older people (aged 40 years and older) with intellectual disability on a 3-yearly cycle. The family carers complete a self-administered, mixed-methods questionnaire. The qualitative data are analysed thematically, and a descriptive analysis of the quantitative data is conducted using SPSS.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>In each wave, sibling carers comprised a significant proportion of the Carer's Study participants: W1 58%; W2: 61.4%; W3: 76.7%; and W4: 45.8%. The siblings were predominantly female, not in paid employment and were caring without the support of a spouse or partner. Across the four waves, siblings reported good general health. However, a high prevalence of particular conditions including back pain, aching joints and stress was also reported, and in each wave, siblings reported feeling completely overwhelmed by their care responsibilities. Although sibling carers reported that they have considered the future, only a minority have progressed to action in this regard.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>There is evidence of the strong relational and emotional commitment by the siblings to their brother or sister with intellectual disability. However, through the four waves of data, there was also evidence of physical, mental and financial toll. An urgent need exists to identify and engage with siblings to protect their well-being as they provide care for an increasingly ageing sibling.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 4","pages":"534-543"},"PeriodicalIF":1.5,"publicationDate":"2023-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49212951","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}
Darren Chadwick, Cameron Richards, Martin Molin, Iva Strnadová
<p>We are delighted to bring you this special edition of the <i>British Journal of Learning Disabilities</i> focussed on digital inclusion. This editorial is split into six sections. Following this introduction, it provides an overview of the special issue. Third, it summarises some of the key themes and findings arising from the work presented in this issue. Fourth, the reflections of Cameron Richards, our editor who has a learning disability, are presented. Fifth, we introduce the In Response article written by people with learning disabilities about one of the articles in this special edition. We close with some reflections on contemporary topics of interest, the current state of research in the field and provide some suggestions for future research endeavours to enhance the digital inclusion of people with learning disabilities.</p><p>Digital citizenship is the current state for many within society. Much of our lives is spent engaging with internet-enabled technology, and many are constantly connected and occupied by their digital devices and the activities and pastimes they pursue upon them. Many everyday tasks have moved or developed counterparts online, and there is an ever-increasing pressure to ‘keep up’. Hence, the societal demands and expectations for people to be digitally switched on constantly increase.</p><p>Recent figures from ‘we are social’ (<span>2022</span>) report that those using the internet do so for an average of 6 hours and 37 minutes per day, and our technology use continues to increase. Societally, people's online lives are viewed, by some, as equivalent to, or of even greater significance than, their offline lives. Despite this, digital exclusion and disadvantage remain unevenly distributed across society and markedly higher for people from particular groups, including people with learning disabilities. Moreover, in light of the current coronavirus disease 2019 (COVID-19) pandemic, there has been a rise in reliance on online methods of communication and interaction to maintain social networks and social capital (Caton et al., <span>2022</span>; Chadwick et al., <span>2022</span>).</p><p>How digital inclusion has been researched has developed over time. Initial work focussed on access to information and communication technologies (ICTs), including the internet (Chadwick et al., <span>2013</span>). Although these questions of access and inequity remain important, recent conceptualisations have begun to adopt more nuanced and complex considerations of digital participation (Ågren et al., <span>2020</span>). This includes looking at the ways in which people with learning disabilities engage in digital spaces and places, how they interact with ICT and how ICT is involved and embedded, or not, in their everyday lives.</p><p>Hence, digital inclusion describes a range of topics concerned with equality of access to ICT and its associated benefits and is a core component of social inclusion in the world today (DiMaggio & Ga
{"title":"Digital inclusion and people with learning disabilities","authors":"Darren Chadwick, Cameron Richards, Martin Molin, Iva Strnadová","doi":"10.1111/bld.12530","DOIUrl":"10.1111/bld.12530","url":null,"abstract":"<p>We are delighted to bring you this special edition of the <i>British Journal of Learning Disabilities</i> focussed on digital inclusion. This editorial is split into six sections. Following this introduction, it provides an overview of the special issue. Third, it summarises some of the key themes and findings arising from the work presented in this issue. Fourth, the reflections of Cameron Richards, our editor who has a learning disability, are presented. Fifth, we introduce the In Response article written by people with learning disabilities about one of the articles in this special edition. We close with some reflections on contemporary topics of interest, the current state of research in the field and provide some suggestions for future research endeavours to enhance the digital inclusion of people with learning disabilities.</p><p>Digital citizenship is the current state for many within society. Much of our lives is spent engaging with internet-enabled technology, and many are constantly connected and occupied by their digital devices and the activities and pastimes they pursue upon them. Many everyday tasks have moved or developed counterparts online, and there is an ever-increasing pressure to ‘keep up’. Hence, the societal demands and expectations for people to be digitally switched on constantly increase.</p><p>Recent figures from ‘we are social’ (<span>2022</span>) report that those using the internet do so for an average of 6 hours and 37 minutes per day, and our technology use continues to increase. Societally, people's online lives are viewed, by some, as equivalent to, or of even greater significance than, their offline lives. Despite this, digital exclusion and disadvantage remain unevenly distributed across society and markedly higher for people from particular groups, including people with learning disabilities. Moreover, in light of the current coronavirus disease 2019 (COVID-19) pandemic, there has been a rise in reliance on online methods of communication and interaction to maintain social networks and social capital (Caton et al., <span>2022</span>; Chadwick et al., <span>2022</span>).</p><p>How digital inclusion has been researched has developed over time. Initial work focussed on access to information and communication technologies (ICTs), including the internet (Chadwick et al., <span>2013</span>). Although these questions of access and inequity remain important, recent conceptualisations have begun to adopt more nuanced and complex considerations of digital participation (Ågren et al., <span>2020</span>). This includes looking at the ways in which people with learning disabilities engage in digital spaces and places, how they interact with ICT and how ICT is involved and embedded, or not, in their everyday lives.</p><p>Hence, digital inclusion describes a range of topics concerned with equality of access to ICT and its associated benefits and is a core component of social inclusion in the world today (DiMaggio & Ga","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 2","pages":"119-124"},"PeriodicalIF":1.5,"publicationDate":"2023-05-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12530","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42520393","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}
Julie Eshleman, Jane Seale, Kate Lunness, Ellie Blackburn, Jane Gaunt, Alistair Hammond, Sean Waldron
{"title":"Supporting people with learning disabilities to use technology, frameworks and toolkits, By Jane Seale","authors":"Julie Eshleman, Jane Seale, Kate Lunness, Ellie Blackburn, Jane Gaunt, Alistair Hammond, Sean Waldron","doi":"10.1111/bld.12533","DOIUrl":"10.1111/bld.12533","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"51 2","pages":"279-282"},"PeriodicalIF":1.5,"publicationDate":"2023-05-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44094233","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}
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