People with a learning disability experience challenges accessing primary health care services, including eye care services.
Methods
Eye care needs of people with a learning disability, and how well they are met by existing services in England, were explored. Barriers and enablers to accessing these services were investigated. This was informed by a scoping review of the literature and a historic literature library.
Findings
Adults with a learning disability are 10 times more likely than other adults to have a serious sight problem and children with learning disabilities are 28 times more likely. There is good evidence of high levels of unmet eye care need special schools in England with over 4 in 10 children attending having no history of any eye care.
Conclusion
The authors discuss possible systemic changes to address these inequalities in England. These include automatic entitlement to an NHS sight test annually, specialist pathways in community opticians, eye care services in special schools, and peer to peer and peer to professional promotion of services by people with lived experience. Dedicated care pathways have improved uptake of services in other areas of primary care. Research into the effectiveness of lived experience eye health advocacy is needed.
有学习障碍的人在获得初级保健服务（包括眼科保健服务）方面会遇到困难。
{"title":"A review of the evidence that people with learning disabilities experience eye health inequalities: What policies can better ensure an equal right to sight?","authors":"Lisa Donaldson, Donna O'Brien, Marek Karas","doi":"10.1111/bld.12573","DOIUrl":"10.1111/bld.12573","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with a learning disability experience challenges accessing primary health care services, including eye care services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Eye care needs of people with a learning disability, and how well they are met by existing services in England, were explored. Barriers and enablers to accessing these services were investigated. This was informed by a scoping review of the literature and a historic literature library.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Adults with a learning disability are 10 times more likely than other adults to have a serious sight problem and children with learning disabilities are 28 times more likely. There is good evidence of high levels of unmet eye care need special schools in England with over 4 in 10 children attending having no history of any eye care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>The authors discuss possible systemic changes to address these inequalities in England. These include automatic entitlement to an NHS sight test annually, specialist pathways in community opticians, eye care services in special schools, and peer to peer and peer to professional promotion of services by people with lived experience. Dedicated care pathways have improved uptake of services in other areas of primary care. Research into the effectiveness of lived experience eye health advocacy is needed.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"302-311"},"PeriodicalIF":1.5,"publicationDate":"2024-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12573","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139554470","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}
People with intellectual disability frequently have eating, drinking and swallowing difficulties (dysphagia) and are at greater risk of premature mortality, particularly from aspiration and respiratory infections. The insertion of a percutaneous endoscopic gastrostomy (PEG), as part of a multidisciplinary management plan, may help to maintain and improve nutrition. This study included people with intellectual disability who had ever had a PEG inserted and who presented to the specialist Speech and Language Therapy team in one Greater Manchester borough between 2000 and 2022 and assessed the risk of death and sociodemographic and clinical factors associated with this.
Methods
This was a cohort study using secondary data. Kaplan–Meier estimates were used to construct the probability of mortality curves. Cox proportional hazards were used to compare death rates in the different sociodemographic and clinical characteristic groups and were presented as hazard ratios and 95% confidence intervals.
Findings
Of 42 people included in the study, 18 (43%) died from the point of PEG insertion to the end of the study (December 2022). The median (interquartile range) time to death from PEG insertion was 5 (2–10) years, with four people (10%) dying in the first year. Aspiration pneumonia and unspecified pneumonia were responsible for seven (39%) deaths. No significant associations were found between sociodemographic and clinical factors and risk of death.
Conclusion
In persons with intellectual disability and a PEG who were followed up between 2000 and 2022, the mortality was around 40% with deaths occurring in the first year and respiratory conditions being an important cause. The lack of association with sociodemographic and clinical characteristics may have been due to a limited sample size. Further research is needed with larger samples and more variables, including quality of life data, to help understand and improve clinical practice in this area.
{"title":"Do sociodemographic and clinical characteristics affect mortality rates in people with intellectual disability and dysphagia who have a percutaneous endoscopic gastrostomy? A cohort study between 2000 and 2022","authors":"Laura Broad, Christine Wee, Anthony D. Harries","doi":"10.1111/bld.12579","DOIUrl":"10.1111/bld.12579","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disability frequently have eating, drinking and swallowing difficulties (dysphagia) and are at greater risk of premature mortality, particularly from aspiration and respiratory infections. The insertion of a percutaneous endoscopic gastrostomy (PEG), as part of a multidisciplinary management plan, may help to maintain and improve nutrition. This study included people with intellectual disability who had ever had a PEG inserted and who presented to the specialist Speech and Language Therapy team in one Greater Manchester borough between 2000 and 2022 and assessed the risk of death and sociodemographic and clinical factors associated with this.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This was a cohort study using secondary data. Kaplan–Meier estimates were used to construct the probability of mortality curves. Cox proportional hazards were used to compare death rates in the different sociodemographic and clinical characteristic groups and were presented as hazard ratios and 95% confidence intervals.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Of 42 people included in the study, 18 (43%) died from the point of PEG insertion to the end of the study (December 2022). The median (interquartile range) time to death from PEG insertion was 5 (2–10) years, with four people (10%) dying in the first year. Aspiration pneumonia and unspecified pneumonia were responsible for seven (39%) deaths. No significant associations were found between sociodemographic and clinical factors and risk of death.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>In persons with intellectual disability and a PEG who were followed up between 2000 and 2022, the mortality was around 40% with deaths occurring in the first year and respiratory conditions being an important cause. The lack of association with sociodemographic and clinical characteristics may have been due to a limited sample size. Further research is needed with larger samples and more variables, including quality of life data, to help understand and improve clinical practice in this area.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"291-301"},"PeriodicalIF":1.5,"publicationDate":"2024-01-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139553793","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}
Patricia Pérez-Curiel, Eva Vicente, Mª Lucía Morán, Laura E. Gómez
Background
Special attention is required when considering any educational intervention aimed at its promotion and development. Our objective is to conduct an umbrella review of systematic reviews that gather evidence from relationships and sex education programmes tailored for individuals with intellectual disabilities.
Methods
The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses Protocol. Systematic reviews were identified through a search in Web of Science, SCOPUS and PsychINFO, using the descriptors: ‘intellectual disab*’ AND ‘sex*’AND ‘systematic’.
Findings
The results of the nine reviews included in the meta-review yield relevant outcomes related to 50 sex education interventions carried out with people with intellectual disabilities. This provided the opportunity to delve into the characteristics of these interventions to ascertain the accomplishments achieved to date.
Conclusions
The findings serve as foundation to propose and promote new research on this important area of life, addressing the inequalities identified concerning the sexuality and affective-sexual education of people with intellectual disabilities. It offers valuable information for the educational, social and healthcare fields, facilitating the design of more effective and rights-respecting initiatives.
{"title":"What do we know about sex education of people with intellectual disabilities? An umbrella review","authors":"Patricia Pérez-Curiel, Eva Vicente, Mª Lucía Morán, Laura E. Gómez","doi":"10.1111/bld.12577","DOIUrl":"10.1111/bld.12577","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Special attention is required when considering any educational intervention aimed at its promotion and development. Our objective is to conduct an umbrella review of systematic reviews that gather evidence from relationships and sex education programmes tailored for individuals with intellectual disabilities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The protocol was developed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-analyses Protocol. Systematic reviews were identified through a search in Web of Science, SCOPUS and PsychINFO, using the descriptors: ‘intellectual disab*’ AND ‘sex*’AND ‘systematic’.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The results of the nine reviews included in the meta-review yield relevant outcomes related to 50 sex education interventions carried out with people with intellectual disabilities. This provided the opportunity to delve into the characteristics of these interventions to ascertain the accomplishments achieved to date.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The findings serve as foundation to propose and promote new research on this important area of life, addressing the inequalities identified concerning the sexuality and affective-sexual education of people with intellectual disabilities. It offers valuable information for the educational, social and healthcare fields, facilitating the design of more effective and rights-respecting initiatives.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"272-290"},"PeriodicalIF":1.5,"publicationDate":"2024-01-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12577","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139518093","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}
Chris Hatton, Richard P. Hastings, Sue Caton, Jill Bradshaw, Andrew Jahoda, Rosemary Kelly, Roseann Maguire, Edward Oloidi, Laurence Taggart, Stuart Todd, The Coronavirus and People with Learning Disabilities Study Team
Background
During the COVID-19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic?
Methods
Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 ‘lockdown’) to Wave 4 (autumn 2022, over a year after public health protections stopped).
Findings
By Wave 4, most people with learning disabilities had had COVID-19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services.
Conclusions
Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened.
{"title":"Health and healthcare of people with learning disabilities in the United Kingdom through the COVID-19 pandemic","authors":"Chris Hatton, Richard P. Hastings, Sue Caton, Jill Bradshaw, Andrew Jahoda, Rosemary Kelly, Roseann Maguire, Edward Oloidi, Laurence Taggart, Stuart Todd, The Coronavirus and People with Learning Disabilities Study Team","doi":"10.1111/bld.12578","DOIUrl":"10.1111/bld.12578","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>During the COVID-19 pandemic in the United Kingdom, many health services were withdrawn from people with learning disabilities, with negative impacts on people's health. What has happened to people's health and healthcare as we move beyond the pandemic?</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Access to health services and health status were tracked for 550 UK adults with learning disabilities, using structured online interviews with people with learning disabilities and online surveys with family members or paid carers. Information was provided four times, from Wave 1 (in the winter 2020/2021 ‘lockdown’) to Wave 4 (autumn 2022, over a year after public health protections stopped).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>By Wave 4, most people with learning disabilities had had COVID-19, although high vaccination rates limited the number of people hospitalised. There was little evidence that use of GP services, community nurses, other therapists or annual health checks had increased over time, and at Wave 4 more people were having difficulty getting their medicines. People's health did not substantially improve over time. People with profound and multiple learning disabilities had poorer health and were less likely to be accessing health services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Improvements in access to health services for people with learning disabilities after the pandemic have not yet happened.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"260-271"},"PeriodicalIF":1.5,"publicationDate":"2024-01-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12578","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139470129","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}
People with learning disabilities following a long-term stay in forensic settings may experience difficulties reintegrating in the wider community. Indirect interventions can be helpful for care providers and family members to reflect on their practices and improve the quality of life of people with learning disabilities. Although indirect interventions are being implemented in learning disability settings, research is limited.
Methods
This clinical case study recounts an indirect intervention with care providers of a male with mild learning disability.
Findings
We recount the referral and assessment processes, the initial hypotheses and formulation of the service users' presenting difficulties. We demonstrate how a systemically informed indirect intervention with staff can be used to improve the living conditions of a man with mild learning disability and provide reflections on working with multiple interdependent systems surrounding vulnerable individuals in a specialist learning disability setting.
Conclusion
Indirect interventions with the care networks supporting an individual with a learning disability can be a useful way to conceptualise the barriers and facilitators for community integration. Indirect interventions can also offer a reflective space for staff to share their own difficulties and prevent burnout.
{"title":"Indirect intervention with staff to support a male with mild learning disability navigate the community setting: A clinical case study","authors":"Dafni Katsampa, Louisa Rhodes","doi":"10.1111/bld.12574","DOIUrl":"10.1111/bld.12574","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with learning disabilities following a long-term stay in forensic settings may experience difficulties reintegrating in the wider community. Indirect interventions can be helpful for care providers and family members to reflect on their practices and improve the quality of life of people with learning disabilities. Although indirect interventions are being implemented in learning disability settings, research is limited.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This clinical case study recounts an indirect intervention with care providers of a male with mild learning disability.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>We recount the referral and assessment processes, the initial hypotheses and formulation of the service users' presenting difficulties. We demonstrate how a systemically informed indirect intervention with staff can be used to improve the living conditions of a man with mild learning disability and provide reflections on working with multiple interdependent systems surrounding vulnerable individuals in a specialist learning disability setting.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>Indirect interventions with the care networks supporting an individual with a learning disability can be a useful way to conceptualise the barriers and facilitators for community integration. Indirect interventions can also offer a reflective space for staff to share their own difficulties and prevent burnout.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"397-409"},"PeriodicalIF":1.5,"publicationDate":"2024-01-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139458886","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}
Fintan Sheerin, Sandra Fleming, Peter May, Philip McCallion, Mary McCarron, Amara Naseer, Georgia Lalor, Maureen D'Eath
Background
People with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes.
Method
A descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members.
Results
Continued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per-capita funding practices were reported as unresponsive to growing age-related complexity and fundamentally unsustainable.
Conclusions
The health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age-related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding.
{"title":"Challenges in care and service provision for older adults with intellectual disabilities and complex age-related conditions in Ireland","authors":"Fintan Sheerin, Sandra Fleming, Peter May, Philip McCallion, Mary McCarron, Amara Naseer, Georgia Lalor, Maureen D'Eath","doi":"10.1111/bld.12572","DOIUrl":"10.1111/bld.12572","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities are living longer and are increasingly diverse, with health and care needs that are varied and complex. Without changes to funding, services have found it difficult to respond to needs and wishes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>A descriptive mixed methods design study, data were collected through questionnaire, focus groups and individual interviews from intellectual disability service managers, direct care staff and older people with intellectual disabilities and family members.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Results</h3>\u0000 \u0000 <p>Continued reticence on the part of some community healthcare providers to treat people with intellectual disability was noted. Although some service innovations were noted, housing, staffing levels, staff mix and the timely provision of equipment were all reported to impact the ability of services to respond to changing needs. Current per-capita funding practices were reported as unresponsive to growing age-related complexity and fundamentally unsustainable.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The health inequalities experienced by people with intellectual disabilities are compounded as they age with complex age-related health needs. There is an urgent need for revision of the service model in Ireland and instigation of flexible and responsive approaches to funding.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"248-259"},"PeriodicalIF":1.5,"publicationDate":"2024-01-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12572","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139383242","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}
Despite the advancements in the rights of persons with disabilities in Western countries, the motherhood of women with intellectual disabilities remains scarcely visible. The approval of the Convention on the Rights of Persons with Disabilities (2006) and its subsequent ratification by the Spanish Government (2008) recalls the obligation to fulfil the rights of persons with disabilities to found a family (art. 23) and to choose who they want to live with (art. 19). While the importance of this legislation is undeniable, the personal experiences of women with intellectual disabilities still demand effective changes.
Methods
This article reports the results of a study entitled Subjectivities and motherhood in women with intellectual disabilities. Reflections in dialogue through an inclusive research project. In this study, we delved into the stories of 13 women, aged between 24 and 72, to learn about their motherhood experiences (before, during and after making the decision of being mothers) and to identify the barriers and supports encountered. Methods for data collection included individual semi-structured interviews, discussion groups and other narrative and visual resources (images and biograms).
Findings
This study explores in depth the obstacles identified by the participating mothers, which have been organised around six themes: (1) information and guidance on sexuality and family planning, (2) assistance of health services, (3) employment and housing situation, (4) child custody, (5) raising children, and (6) informal support. The participants encountered difficulties in all the above fields related to contextual factors. In other words, these barriers do not derive from individual issues centred on their disability, but from factors that often do not depend on mothers with intellectual disabilities, such as deprivation of socio-educational opportunities.
Conclusions
Our results show the nuanced ways in which these mothers were immersed in a social system that questions them as ‘good mothers’ and violates their rights. As we discussed, the participants' desires and decisions to engage and/or continue with motherhood constitute an exercise of resistance to this system.
{"title":"Motherhood and intellectual disability in Spain: Experienced difficulties and shared desires for change","authors":"Ana María Rio-Poncela, Susana Rojas-Pernia","doi":"10.1111/bld.12571","DOIUrl":"10.1111/bld.12571","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Backgroud</h3>\u0000 \u0000 <p>Despite the advancements in the rights of persons with disabilities in Western countries, the motherhood of women with intellectual disabilities remains scarcely visible. The approval of the Convention on the Rights of Persons with Disabilities (2006) and its subsequent ratification by the Spanish Government (2008) recalls the obligation to fulfil the rights of persons with disabilities to found a family (art. 23) and to choose who they want to live with (art. 19). While the importance of this legislation is undeniable, the personal experiences of women with intellectual disabilities still demand effective changes.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This article reports the results of a study entitled <i>Subjectivities and motherhood in women with intellectual disabilities. Reflections in dialogue through an inclusive research project.</i> In this study, we delved into the stories of 13 women, aged between 24 and 72, to learn about their motherhood experiences (before, during and after making the decision of being mothers) and to identify the barriers and supports encountered. Methods for data collection included individual semi-structured interviews, discussion groups and other narrative and visual resources (images and biograms).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>This study explores in depth the obstacles identified by the participating mothers, which have been organised around six themes: (1) information and guidance on sexuality and family planning, (2) assistance of health services, (3) employment and housing situation, (4) child custody, (5) raising children, and (6) informal support. The participants encountered difficulties in all the above fields related to contextual factors. In other words, these barriers do not derive from individual issues centred on their disability, but from factors that often do not depend on mothers with intellectual disabilities, such as deprivation of socio-educational opportunities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Our results show the nuanced ways in which these mothers were immersed in a social system that questions them as ‘good mothers’ and violates their rights. As we discussed, the participants' desires and decisions to engage and/or continue with motherhood constitute an exercise of resistance to this system.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"236-247"},"PeriodicalIF":1.5,"publicationDate":"2023-12-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12571","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138572503","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}
Michelle Iffland, Mikaela Jorgensen, Donna Gillies
Background
People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this study was to identify the most common associated causes that may have contributed to the deaths of Australians with intellectual or learning disabilities, particularly those that may be avoidable.
Methods
Linked data that had previously been used to identify underlying causes of deaths were re-analysed to determine other contributing causes of death in Australians with intellectual disabilities aged under 65 years who accessed disability services between July 2013 and June 2018.
Findings
Two thousand three hundred and thirty-three deaths occurred among 180,790 people with intellectual disability. Contributing causes of death with the greatest disparities compared to the general community were lung diseases due to external agents (adjusted rate ratio (RR) 70.6 (95% confidence interval [95% CI] 63.7–78.2), influenza and pneumonia (RR 18.3; 95% CI 16.4–20.4), and coronary heart disease (RR 3.3; 95% CI 2.8–3.8).
Conclusions
Analysing all contributing causes of death in people with intellectual disabilities can ensure that the higher rates of preventable deaths in people with intellectual disability are identified and addressed earlier in the disability and health sectors.
{"title":"Contributing causes of mortality and potentially avoidable deaths of people with intellectual or learning disability: A data-linkage study","authors":"Michelle Iffland, Mikaela Jorgensen, Donna Gillies","doi":"10.1111/bld.12569","DOIUrl":"10.1111/bld.12569","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>People with intellectual disabilities are at much higher risk of preventable deaths compared to the general community. However, studies identifying the cause of death in people with intellectual disability are generally based on one primary cause which is frequently attributed to the person's disability. Therefore, the aim of this study was to identify the most common associated causes that may have contributed to the deaths of Australians with intellectual or learning disabilities, particularly those that may be avoidable.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Linked data that had previously been used to identify underlying causes of deaths were re-analysed to determine other contributing causes of death in Australians with intellectual disabilities aged under 65 years who accessed disability services between July 2013 and June 2018.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Two thousand three hundred and thirty-three deaths occurred among 180,790 people with intellectual disability. Contributing causes of death with the greatest disparities compared to the general community were lung diseases due to external agents (adjusted rate ratio (RR) 70.6 (95% confidence interval [95% CI] 63.7–78.2), influenza and pneumonia (RR 18.3; 95% CI 16.4–20.4), and coronary heart disease (RR 3.3; 95% CI 2.8–3.8).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Analysing all contributing causes of death in people with intellectual disabilities can ensure that the higher rates of preventable deaths in people with intellectual disability are identified and addressed earlier in the disability and health sectors.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"456-464"},"PeriodicalIF":1.2,"publicationDate":"2023-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138562675","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}
Milou van den Bemd, Viviana Suichies, Erik Bischoff, Geraline L. Leusink, Maarten Cuypers
<div> <section> <h3> Background</h3> <p>Type 2 diabetes mellitus, cardiovascular disease and chronic obstructive pulmonary disease contribute significantly to societal and individual impact globally. High-quality management of these long-term health conditions is important to prevent deterioration of health, although potentially more complex for patients with intellectual disabilities in residential care. Disease management in this context particularly benefits from complete and accurate recording of disease management. Without complete records, long-term health conditions are more difficult to track due to the level of uncertainty regarding which clinical examinations have and have not been performed. This study therefore aims to examine the recording routines of quality indicators for disease monitoring for chronically ill patients with intellectual disabilities in Dutch residential care.</p> </section> <section> <h3> Methods</h3> <p>This retrospective study utilised medical record data from a large Dutch long-term care provider. We assessed the occurrence of cardiovascular disease (ICPC-2 codes K74, K75, K76, K89 and K90), type 2 diabetes mellitus (T90, T90.02) and/or COPD (R91, R95). For adults with intellectual disabilities and long-term condition, we analysed data entries in an 18-month period (between July 2020 and December 2021). Observed consultation rates were calculated and presented in median with interquartile range and contrasted against the baseline number of consultations in primary care. Information on recorded quality indicators was presented in frequencies and percentages.</p> </section> <section> <h3> Findings</h3> <p>Of the three long-term conditions investigated, the most common was type 2 diabetes mellitus (8.6%; <i>n</i> = 287), followed by cardiovascular disease (5.8%; <i>n</i> = 195) and COPD (3.0%; <i>n</i> = 101). Of those who received management for their long-term condition from their contracted GP, patients with type 2 diabetes mellitus, cardiovascular disease, or COPD had fewer consultations in 2021 than the Dutch baseline. Discussion of lifestyle was often not recorded. Disease monitoring quality indicators were recorded more often but at a lower frequency than expected.</p> </section> <section> <h3> Conclusions</h3> <p>Because of the infrequent recording of quality indicators, recording of management of long-term conditions for patients with intellectual disabilities in long-term care appears suboptimal. Although this may not directly harm individual patients, it may jeopardise the quality of management of long-ter
{"title":"Records of quality indicators for management of long-term health conditions of patients with intellectual disabilities in Dutch residential care","authors":"Milou van den Bemd, Viviana Suichies, Erik Bischoff, Geraline L. Leusink, Maarten Cuypers","doi":"10.1111/bld.12570","DOIUrl":"10.1111/bld.12570","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Type 2 diabetes mellitus, cardiovascular disease and chronic obstructive pulmonary disease contribute significantly to societal and individual impact globally. High-quality management of these long-term health conditions is important to prevent deterioration of health, although potentially more complex for patients with intellectual disabilities in residential care. Disease management in this context particularly benefits from complete and accurate recording of disease management. Without complete records, long-term health conditions are more difficult to track due to the level of uncertainty regarding which clinical examinations have and have not been performed. This study therefore aims to examine the recording routines of quality indicators for disease monitoring for chronically ill patients with intellectual disabilities in Dutch residential care.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>This retrospective study utilised medical record data from a large Dutch long-term care provider. We assessed the occurrence of cardiovascular disease (ICPC-2 codes K74, K75, K76, K89 and K90), type 2 diabetes mellitus (T90, T90.02) and/or COPD (R91, R95). For adults with intellectual disabilities and long-term condition, we analysed data entries in an 18-month period (between July 2020 and December 2021). Observed consultation rates were calculated and presented in median with interquartile range and contrasted against the baseline number of consultations in primary care. Information on recorded quality indicators was presented in frequencies and percentages.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Of the three long-term conditions investigated, the most common was type 2 diabetes mellitus (8.6%; <i>n</i> = 287), followed by cardiovascular disease (5.8%; <i>n</i> = 195) and COPD (3.0%; <i>n</i> = 101). Of those who received management for their long-term condition from their contracted GP, patients with type 2 diabetes mellitus, cardiovascular disease, or COPD had fewer consultations in 2021 than the Dutch baseline. Discussion of lifestyle was often not recorded. Disease monitoring quality indicators were recorded more often but at a lower frequency than expected.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Because of the infrequent recording of quality indicators, recording of management of long-term conditions for patients with intellectual disabilities in long-term care appears suboptimal. Although this may not directly harm individual patients, it may jeopardise the quality of management of long-ter","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 3","pages":"465-476"},"PeriodicalIF":1.2,"publicationDate":"2023-12-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12570","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138562453","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":"Failed ambitions: Kew cottages and changing ideas of intellectual disabilities By Lee Ann Monk, David Henderson, Christine Bigby, Richard Broome, David Henderson, Melbourne: Monash University. 2023. pp. 500. £26.99 (Kindle and Print editions). ISBN: 978-1-922633-78-1","authors":"Jan Walmsley","doi":"10.1111/bld.12566","DOIUrl":"10.1111/bld.12566","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"435"},"PeriodicalIF":1.5,"publicationDate":"2023-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139222025","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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