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}
Communicating with people with severe/profound intellectual disabilities is essential for person-centred, rights-based support. Despite a proliferation of research around COVID-19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID-19 pandemic.
Methods
A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically.
Findings
Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID-19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID-19 restrictions, communication remained a priority.
Conclusions
Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well-being of people with severe/profound intellectual disabilities was identified. This was a small-scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning.
{"title":"‘We became their beginning, their middle and their end’","authors":"Michelle Murphy, Anne-Marie Martin","doi":"10.1111/bld.12565","DOIUrl":"10.1111/bld.12565","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Communicating with people with severe/profound intellectual disabilities is essential for person-centred, rights-based support. Despite a proliferation of research around COVID-19, there is a dearth of evidence exploring its impact on communication with people with severe/profound intellectual disabilities. This study aimed to explore disability support staff experiences of communicating with people with severe/profound intellectual disabilities through the COVID-19 pandemic.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>A qualitative descriptive study was undertaken. A purposive sample of six disability support staff who supported people with severe/profound intellectual disabilities through the pandemic in four Irish residential services participated in online, semistructured interviews. Data were analysed thematically.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Six themes were generated including unwavering commitment; running on empty; being a safe haven; empathic understanding; heightened sensitivity and new insights. Participants discussed the impact of COVID-19 on communicating with people they support, the contextual challenges, how these were managed/overcome and new learning that emerged. Although communication challenges did present because of COVID-19 restrictions, communication remained a priority.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>Despite the challenges experienced by disability support workers, their unwavering commitment to ensuring the well-being of people with severe/profound intellectual disabilities was identified. This was a small-scale qualitative study but highlights areas warranting further research and makes recommendations for practice and service planning.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"225-235"},"PeriodicalIF":1.5,"publicationDate":"2023-11-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12565","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496238","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 humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by which the gap between humanistic declarations and practice can be overcome.
Method
The research focused on the role perception of 30 direct support providers who participated in semistructured interviews. A case study methodology was used applying an interpretative phenomenological analysis (IPA).
Findings
The interviews revealed that a humanistic perspective has been partially incorporated into the general attitudes of direct support providers. In practice, however, they indicated that they face dilemmas that challenge them in their daily work.
Conclusion
To assist direct support providers in resolving their dilemmas, by adhering to humanistic principles, a ‘humanization’ model is offered. The theoretical principles underlying the model focus on meaningful life as the aim of support, enhancing recipients’ autonomy, adhering to a holistic perspective and conducting dialogues acknowledging the abilities of people with intellectual disability to understand, choose and face challenges. Further examination of the model and its application in practice is recommended.
{"title":"Humanization: The humanistic perspective as a guide for supporting people with intellectual disability","authors":"Ran Neuman","doi":"10.1111/bld.12568","DOIUrl":"10.1111/bld.12568","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by which the gap between humanistic declarations and practice can be overcome.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>The research focused on the role perception of 30 direct support providers who participated in semistructured interviews. A case study methodology was used applying an interpretative phenomenological analysis (IPA).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The interviews revealed that a humanistic perspective has been partially incorporated into the general attitudes of direct support providers. In practice, however, they indicated that they face dilemmas that challenge them in their daily work.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>To assist direct support providers in resolving their dilemmas, by adhering to humanistic principles, a ‘humanization’ model is offered. The theoretical principles underlying the model focus on meaningful life as the aim of support, enhancing recipients’ autonomy, adhering to a holistic perspective and conducting dialogues acknowledging the abilities of people with intellectual disability to understand, choose and face challenges. Further examination of the model and its application in practice is recommended.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"216-224"},"PeriodicalIF":1.5,"publicationDate":"2023-11-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496249","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":"Intellectual disabilities: Health and social care across the lifespan By Sheerin Fintan, Doyle Carmel (Eds.), Switzerland: Springer. 2023. €50.28 (eBook 978-3-031-27496-1, €39.58). ISBN: 978-3-031-27495-4.","authors":"Owen Doody","doi":"10.1111/bld.12567","DOIUrl":"10.1111/bld.12567","url":null,"abstract":"","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"436"},"PeriodicalIF":1.5,"publicationDate":"2023-11-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139254158","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}
Service user involvement is imperative in the delivery of mental health services. However, a paucity of research has explored how individuals with a learning disability find waiting for therapy. Therefore, this project aimed to explore how service users accessing a community learning disability team experienced waiting for psychological therapy.
Methods
Ten adults on a waiting list for psychological therapy in Yorkshire, UK completed a semistructured interview, which explored their experiences of being on the waiting list. Interviews were transcribed and analysed using thematic analysis.
Findings
Five superordinate themes were drawn from the analysis. Participants recalled long waits for therapy, struggled waiting and were unsure when therapy would start. Relief and hopefulness were common when they were put forward for therapy. Difficulties reading and/or remembering letters were prominent. Keeping busy and support from others helped participants cope while waiting. Participants would have valued additional support including having someone on call, regular check-ins and information on other appropriate services.
Conclusions
This project led to a range of recommendations to inform a psychology waiting list standard operating procedure, service developments and improve the waiting list experience for service users. A future project exploring parent and carer experiences of the waiting list is warranted.
{"title":"A service evaluation exploring clients' experiences of being on a waiting list for individual psychological therapy with a community learning disability team","authors":"Laura Hall","doi":"10.1111/bld.12564","DOIUrl":"10.1111/bld.12564","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Service user involvement is imperative in the delivery of mental health services. However, a paucity of research has explored how individuals with a learning disability find waiting for therapy. Therefore, this project aimed to explore how service users accessing a community learning disability team experienced waiting for psychological therapy.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Ten adults on a waiting list for psychological therapy in Yorkshire, UK completed a semistructured interview, which explored their experiences of being on the waiting list. Interviews were transcribed and analysed using thematic analysis.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Five superordinate themes were drawn from the analysis. Participants recalled long waits for therapy, struggled waiting and were unsure when therapy would start. Relief and hopefulness were common when they were put forward for therapy. Difficulties reading and/or remembering letters were prominent. Keeping busy and support from others helped participants cope while waiting. Participants would have valued additional support including having someone on call, regular check-ins and information on other appropriate services.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>This project led to a range of recommendations to inform a psychology waiting list standard operating procedure, service developments and improve the waiting list experience for service users. A future project exploring parent and carer experiences of the waiting list is warranted.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"208-215"},"PeriodicalIF":1.5,"publicationDate":"2023-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496248","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}
Jonathan Williams, Fiona Pender, Saman Shahzad, Ceri Woodrow, Rimsha Dar, Matthew Humphreys, Joanne Evans-Stone, Sharleen Nall-Evans, Peter Wilson
Background
This study investigated differences in the clinical and demographic characteristics of individuals with intellectual disabilities delayed in assessment and treatment hospitals versus individuals who were not delayed. The study further investigated the clinical outcomes of the individuals whose discharge from the hospital was delayed.
Method
This was a cohort study using secondary data collected from patient records. Variables included age, ethnicity, levels of deprivation, areas of origin, diagnoses, and the provision of a care and treatment review. A comparison was made between individuals who became delayed despite being clinically ready for discharge and those who were discharged on time.
Findings
Individuals with severe intellectual disabilities were more likely to experience delayed discharge from hospital (p = 0.001). Similarly, people who were admitted to hospitals away from their home areas were also more likely to experience delayed discharge (p < 0.001). There were no significant differences between the delayed and nondelayed groups for other factors such as age, deprivation or ethnicity. Individuals who experienced a delay in discharge did not experience an increased rate of adverse incidents compared to the period of active treatment and clinical improvements were maintained during the period of delay. There were low rates of completion of care and treatment reviews before admission, although people who were delayed were more likely to have received a review during admission (78.8% vs. 27.1%).
Conclusion
It is important for clinicians and service development leads to be aware that people who are admitted away from their home area and people with severe intellectual disabilities may be at higher risk of experiencing significantly delayed discharge from the hospital. More broadly, many people remained in hospital for a substantial length of time after being assessed as clinically ready for discharge. Due to the low rates of completion before admission, the expansion of community-based care and treatment reviews should also be explored. While people did not suffer increased rates of adverse incidents during their extended stay, their liberty was still restricted, hence there should be a focus on effective community provision. The current model of relying on the willingness of independent providers to support the care of complex individuals requires significant reform.
{"title":"A study of the clinical and demographic characteristics of adults with an intellectual disability who remain in learning disability assessment and treatment units despite being clinically ready for discharge","authors":"Jonathan Williams, Fiona Pender, Saman Shahzad, Ceri Woodrow, Rimsha Dar, Matthew Humphreys, Joanne Evans-Stone, Sharleen Nall-Evans, Peter Wilson","doi":"10.1111/bld.12562","DOIUrl":"10.1111/bld.12562","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>This study investigated differences in the clinical and demographic characteristics of individuals with intellectual disabilities delayed in assessment and treatment hospitals versus individuals who were not delayed. The study further investigated the clinical outcomes of the individuals whose discharge from the hospital was delayed.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Method</h3>\u0000 \u0000 <p>This was a cohort study using secondary data collected from patient records. Variables included age, ethnicity, levels of deprivation, areas of origin, diagnoses, and the provision of a care and treatment review. A comparison was made between individuals who became delayed despite being clinically ready for discharge and those who were discharged on time.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Individuals with severe intellectual disabilities were more likely to experience delayed discharge from hospital (<i>p</i> = 0.001). Similarly, people who were admitted to hospitals away from their home areas were also more likely to experience delayed discharge (<i>p</i> < 0.001). There were no significant differences between the delayed and nondelayed groups for other factors such as age, deprivation or ethnicity. Individuals who experienced a delay in discharge did not experience an increased rate of adverse incidents compared to the period of active treatment and clinical improvements were maintained during the period of delay. There were low rates of completion of care and treatment reviews before admission, although people who were delayed were more likely to have received a review during admission (78.8% vs. 27.1%).</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusion</h3>\u0000 \u0000 <p>It is important for clinicians and service development leads to be aware that people who are admitted away from their home area and people with severe intellectual disabilities may be at higher risk of experiencing significantly delayed discharge from the hospital. More broadly, many people remained in hospital for a substantial length of time after being assessed as clinically ready for discharge. Due to the low rates of completion before admission, the expansion of community-based care and treatment reviews should also be explored. While people did not suffer increased rates of adverse incidents during their extended stay, their liberty was still restricted, hence there should be a focus on effective community provision. The current model of relying on the willingness of independent providers to support the care of complex individuals requires significant reform.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"199-207"},"PeriodicalIF":1.5,"publicationDate":"2023-11-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496247","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}
Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities.
Methods
Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set.
Findings
The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future.
Conclusions
The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child.
{"title":"The lived experience of immigrant parents of disabled adolescents and young adults transitioning into adulthood: A narrative inquiry","authors":"Dominic Andrew Nyikach, Ketil Lenert Hansen","doi":"10.1111/bld.12563","DOIUrl":"10.1111/bld.12563","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Immigrant parents' perspectives on raising adolescents and young adults with intellectual disabilities during the transition to adulthood are the focus of this study. Disabled children demand more care and support as they mature and transition to adulthood. This increased care demand places significant stress on parents' wellbeing and participation in social and economic activities.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Qualitative interviews were undertaken with purposively sampled immigrant parents of adolescents and young adults with intellectual disabilities transitioning into adulthood. The study used inductive thematic analysis to identify common themes across the data set.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>The birth of their disabled child marked a new beginning in a family's life, characterised first by shock and later by acceptance. Informants experienced challenges associated with language and information access, reduced service, social isolation, skewed gender roles and worrying about their children's future.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The intersection between migration and disability can aggravate the care burden. Knowledge about parents' experiences is crucial for designing rehabilitation programmes, promoting wellbeing and bridging gaps between services recommended by service providers and the actual needs of the family and child.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"188-198"},"PeriodicalIF":1.5,"publicationDate":"2023-11-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12563","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138496246","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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