{"title":"Strategies to prevent or reduce inequalities in specific avoidable causes of death for adults with intellectual disability: A systematic review","authors":"Pauline Heslop, Emily Lauer","doi":"10.1111/bld.12576","DOIUrl":"10.1111/bld.12576","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>We now have sufficient evidence demonstrating inequalities in specific avoidable causes of death for adults with intellectual disability compared to their peers without intellectual disability. Apart from covid-19, the largest differentials that disadvantage people with intellectual disability are in relation to pneumonia, aspiration pneumonia, epilepsy, cerebrovascular disease, ischaemic heart disease, deep vein thrombosis, diabetes and sepsis. The aim of this systematic review is to report on strategies at the individual, population or policy levels aimed at preventing these conditions that are applicable to adults with intellectual disability and that have been based on or recommended by research.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>Systematic review of PUBMED, EMBASE, CINAHL, PsychInfo, Social Care Online, International Bibliography of the Social Sciences (IBSS), Web of Science, Scopus, Overton, the Cochrane Library and Google Scholar databases was carried out. Searches were completed on 30 June 2023. Quantitative, qualitative and mixed-methods research; systematic, scoping or evidence-based reviews; and audit and reports of mortality reviews were included. Publications included in the review were about preventing the eight potentially avoidable causes of death.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Ninety-four papers were included in the review (9 in relation to pneumonia; 11 for aspiration pneumonia; 18 for sudden unexpected death in epilepsy; 7 for cerebrovascular disease; 8 for ischaemic heart disease; 4 for deep vein thrombosis; 31 for diabetes; 6 for sepsis). The eight most frequently occurring potentially avoidable causes of death in people with intellectual disability are very different medical conditions, but they shared striking similarities in how they could be prevented. The literature overwhelmingly implicated the need to make lifestyle changes to address obesity, lack of exercise and poor nutrition, and to have regular medical reviews. In addition, ‘whole-population’ approaches are required that look beyond the individual to the social determinants of health.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>We found little peer-reviewed evidence specifically about preventing these conditions in people with intellectual disability. However, most of the literature about preventative strategies pertaining to the general population was applicable to people with intellectual disability, albeit that some ‘reasonable adjustments’ would be required.</p>\u0000 </section>\u0000","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"312-349"},"PeriodicalIF":1.5,"publicationDate":"2024-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12576","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139657117","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}
Harry James Kinneil Cowan, Loretta Sheppard, Rosamund Harrington
{"title":"Young adults with intellectual disabilities participating in employment-related activities using the pathways and resources for engagement and participation intervention: A case study","authors":"Harry James Kinneil Cowan, Loretta Sheppard, Rosamund Harrington","doi":"10.1111/bld.12580","DOIUrl":"10.1111/bld.12580","url":null,"abstract":"<div>\u0000 \u0000 \u0000 <section>\u0000 \u0000 <h3> Background</h3>\u0000 \u0000 <p>Participation-focused interventions are gaining momentum. The Pathways and Resources for Engagement and Participation (PREP) is one such intervention, and it was investigated in this study for its effectiveness in supporting participation in employment-related activities for young adults with intellectual disabilities in Australia.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Methods</h3>\u0000 \u0000 <p>The application of the PREP approach was adapted to accommodate COVID-19 restrictions. Data were gathered from multiple sources in a triangulating manner following a case study design. Measures of performance, satisfaction, and a third measure of involvement were collected using the Canadian Occupational Performance Measure (COPM) in a multiple baseline format. The work questionnaire from the Assessment of Life Habits (Life-H) was administered at three time points, and qualitative data were collected post-intervention via a separate semi-structured interview with four young adults with intellectual disabilities and the two occupational therapist facilitators.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Findings</h3>\u0000 \u0000 <p>Performance, satisfaction and involvement scores had increased for 75% or more of employment-related goals at follow-up, although these changes were not statistically significant. Visual analysis indicated improved Life-H accomplishment scores post-intervention, but satisfaction with employment scores did not change. PREP was positively perceived, but the young adults reported needing more support from their participation teams.</p>\u0000 </section>\u0000 \u0000 <section>\u0000 \u0000 <h3> Conclusions</h3>\u0000 \u0000 <p>The PREP intervention shifts the focus from a skills-based approach to a participation approach to practice and empowers young adults with intellectual disabilities to have greater independence over employment goals and related activities. COVID-19 restrictions limited the application of the PREP approach, but the experience was still valued by the participants, although additional training and support for them and the PREP participation team working with them may have further enhanced their experience and participation outcomes.</p>\u0000 </section>\u0000 </div>","PeriodicalId":47232,"journal":{"name":"British Journal of Learning Disabilities","volume":"52 2","pages":"410-421"},"PeriodicalIF":1.5,"publicationDate":"2024-01-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/bld.12580","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139656265","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":"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}
{"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
{"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
{"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}
{"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
{"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}
{"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
{"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}