Tizard Learning Disability Review最新文献

{"title":"Brief report on six clinical cases of trauma in families that have children and adults who have a learning disability and/or are autistic","authors":"N. Blackman, Konstantinos Vlachakis, Anna Annes, S. Griffin, Peter Baker","doi":"10.1108/tldr-08-2021-0022","DOIUrl":"https://doi.org/10.1108/tldr-08-2021-0022","url":null,"abstract":"\u0000Purpose\u0000Research and anecdotal clinical work indicate that complex post-traumatic stress disorder (CPTSD) in families that have children and adults who have a learning disability and/or are autistic may be prevalent. This paper aims to provide a preliminary formulation of complex trauma in families.\u0000\u0000\u0000Design/methodology/approach\u0000This report is based on a review of clinical psychotherapeutic work with six families. The themes are derived from the assessment period through examining the assessment reports and clinical supervision notes for thematic patterns.\u0000\u0000\u0000Findings\u0000This report suggests that the prevalence of CPTSD in families of people who have a learning disability and/or are autistic needs to be researched across the family lifecycle and that there are specific factors that mediate complex trauma symptomatology.\u0000\u0000\u0000Originality/value\u0000CPTSD symptomatology in these families is inadequately conceptualised and this is one of the first papers suggesting this as a potentially helpful framework to consider the experiences of families.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-05-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42799382","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya","authors":"K. Bunning, J. Gona, C. Newton, S. Hartley","doi":"10.1108/tldr-08-2021-0023","DOIUrl":"https://doi.org/10.1108/tldr-08-2021-0023","url":null,"abstract":"\u0000Purpose\u0000Raising a child with learning and developmental disabilities in a low-income setting is challenged by inadequate resources, limited support and poverty. The impacts on caregivers include fatigue, distress and isolation. The purpose of this paper is to report on a programme (2008-2021) that was set up in Kilifi County, Kenya to investigate and address these difficulties.\u0000\u0000\u0000Methodology\u0000The programme used mixed methods through a series of interconnected studies, starting with a situation analysis, followed by a home-based intervention where the caregiver served as agent for change using augmentative and alternative communication (AAC) methods. This was followed by two community-based inclusive development initiatives: disability awareness training to community groups and empowering self-help groups for caregivers of children growing up with disabilities.\u0000\u0000\u0000Findings\u0000The situation analysis revealed scarce support services for caregivers and children with learning and developmental disabilities, with report of limited resources, inadequate coverage and poor professional practice. A home-based, AAC intervention was associated with improved caregiver well-being, significant positive changes to caregiver perceptions of the child’s communication and some expansion to the child’ social activities. However, questions around sustainability persisted. Disability awareness training led by persons with lived experience of disability showed positive changes to the views, values and attitudes of established community groups. Caregiver participation in self-help groups was associated with their greater personal agency, perceptions of increased social support and reduced severity of child’s disability.\u0000\u0000\u0000Originality\u0000The programme narrative demonstrates a rationalised and evidence-based process for community-based inclusive development that is low cost, culturally acceptable, with potential for sustainability.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-03-08","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46896289","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Commentary on “Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya”","authors":"Kathy Leadbitter, G. Divan","doi":"10.1108/tldr-11-2021-0035","DOIUrl":"https://doi.org/10.1108/tldr-11-2021-0035","url":null,"abstract":"\u0000Purpose\u0000This paper is a commentary which aims to address themes arising from the article by Bunning et al. entitled “Empowering caregivers of children with learning and developmental disabilities: from situation analysis to community-based inclusive development in Kilifi, Kenya”.\u0000\u0000\u0000Design/methodology/approach\u0000This commentary provides discussion stimulated by the paper by Bunning et al., including important areas for consideration when developing and evaluating care pathways or solutions to providing support to families of children with disabilities in low- and middle-income countries.\u0000\u0000\u0000Findings\u0000This commentary highlights issues such as: the value of transported and home-grown approaches; the importance of empowerment and advocacy; and the benefits of equitable collaborative partnerships between researchers in low- and middle-income countries and those in high-income countries.\u0000\u0000\u0000Originality/value\u0000This is the personal perspective of two collaborators who have been working in the field of service delivery of complex interventions for children with developmental disabilities in high- and low-income country settings.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-03-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49656908","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress","authors":"Eva Büschi, Gabriela Antener, Anne Parpan-Blaser","doi":"10.1108/tldr-07-2021-0019","DOIUrl":"https://doi.org/10.1108/tldr-07-2021-0019","url":null,"abstract":"\u0000Purpose\u0000This paper aims to provide an overview of the history, current status and future challenges for intellectual disability (ID) policy and practice in Switzerland.\u0000\u0000\u0000Design/methodology/approach\u0000Following a review of the literature, academics in the field of ID in Switzerland reflect on critical issues.\u0000\u0000\u0000Findings\u0000The implementation of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) has resulted in the move from institutions to more flexible and individualised, community-based support services.\u0000\u0000\u0000Originality/value\u0000This paper describes a Western-European country facing the challenges of deinstitutionalisation to become an inclusive society due to directions given by the CRPD.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44063240","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Commentary on: intellectual disability in Switzerland: the Convention on the Rights of Persons with Disabilities as a vehicle for progress","authors":"G. Petri","doi":"10.1108/tldr-11-2021-0036","DOIUrl":"https://doi.org/10.1108/tldr-11-2021-0036","url":null,"abstract":"\u0000Purpose\u0000The purpose of this paper is to provide a commentary on “Intellectual disability in Switzerland: the UN Convention on the Rights of Persons with Disabilities, as a vehicle for progress”.\u0000\u0000\u0000Design/methodology/approach\u0000This commentary highlights the importance of including people with intellectual disabilities in human rights reporting. The commentary builds on available data from academic research as well as civil society reports.\u0000\u0000\u0000Findings\u0000Three main aspects are presented: the lack of involvement of people with intellectual disabilities in human rights reporting, the barriers to their participation in developing and publishing human rights reports and possible strategies to tackle those barriers.\u0000\u0000\u0000Originality/value\u0000The United Nations Convention on the Rights of Persons with disabilities (CRPD) makes it mandatory to include people with intellectual disabilities in policy-making as well as in monitoring the CRPD. Academics need to change their practice to include people with intellectual disabilities in human rights research.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43469374","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"“Lost in the literature.” People with intellectual disabilities who identify as trans: a narrative review","authors":"N. Keates, Eleanor F. A. Dewar, K. Waldock","doi":"10.1108/tldr-04-2021-0009","DOIUrl":"https://doi.org/10.1108/tldr-04-2021-0009","url":null,"abstract":"\u0000Purpose\u0000This narrative review aims to examine how trans people with intellectual disabilities are perceived and discussed in the academic literature.\u0000\u0000\u0000Design/methodology/approach\u0000A narrative review was carried out to better understand the positioning of people with intellectual disabilities who identify as trans.\u0000\u0000\u0000Findings\u0000There was a lack of clear terminology, an over medicalization of both people with intellectual disabilities and trans people and evidence that identifying with a non-conforming gender identity was seen as a problem by services. Services need to be better informed about issues around gender identity so that they are able to better support trans people with intellectual disabilities.\u0000\u0000\u0000Originality/value\u0000To the best of the authors’ knowledge, no previous literature review has focused only on trans people with intellectual disabilities.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-02-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"41982614","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Adapted guided self-help booklets for supporting the well-being of people with intellectual disabilities during the COVID-19 pandemic: an evaluation of impact","authors":"R. Maguire, C. Pert, S. Baines, A. Gillooly, R. Hastings, C. Hatton, D. Dagnan, A. Jahoda","doi":"10.1108/tldr-08-2021-0024","DOIUrl":"https://doi.org/10.1108/tldr-08-2021-0024","url":null,"abstract":"\u0000Purpose\u0000The COVID-19 pandemic meant that it became impossible for many individuals with intellectual disability to access specialist mental health support. The purpose of this study was to evaluate a set of guided self-help resources adapted for delivery on an outreach basis.\u0000\u0000\u0000Design/methodology/approach\u0000The use and impact of the resources were evaluated through: data about downloads and requests for printed materials; interviews with individuals who used the resources; webinars with organisations; family members and support workers who had delivered the resources and an online survey with individuals who had delivered the resources.\u0000\u0000\u0000Findings\u0000The resources had considerable reach, with over 12,555 printed copies requested from across Scotland. The materials were perceived to be relevant and useful, helping individuals to talk about difficulties and to be aware that others were facing similar challenges.\u0000\u0000\u0000Originality/value\u0000The findings highlight the potential long-term value of guided self-help resources to help promote well-being that can be delivered on an outreach basis by family members and social care organisations.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42867299","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Access to and use of health and social care services for people with learning disabilities during COVID-19: a longitudinal study","authors":"Samantha Flynn, Chris Hatton, Richard P. Hastings, Nikita Hayden, Sue Caton, Pauline Heslop, Andrew Jahoda, Stuart Todd, Edward Oloidi, Stephen Beyer, Peter Mulhall, Laurence Taggart","doi":"10.1108/tldr-12-2021-0038","DOIUrl":"https://doi.org/10.1108/tldr-12-2021-0038","url":null,"abstract":"<h3>Purpose</h3>\u0000<p>This paper aims to present data about access to and use of health and social care services by adults with learning disabilities during the COVID-19 pandemic in England, Northern Ireland, Scotland and Wales.</p><!--/ Abstract__block -->\u0000<h3>Design/methodology/approach</h3>\u0000<p>Data were collected in three waves between December 2020 and September 2021 and concerned the use of health and social care services during the COVID-19 pandemic. Data were collected at one or more time-points directly from 694 adults with learning disabilities and through separate proxy reports by family carers and paid support staff of another 447 adults with learning disabilities.</p><!--/ Abstract__block -->\u0000<h3>Findings</h3>\u0000<p>Many people with learning disabilities who reported regularly accessing services/supports pre-pandemic were not receiving them during the timeframe of this study. There were indications of increasing access to some services and supports between Wave 2 and 3, but this was not universal.</p><!--/ Abstract__block -->\u0000<h3>Practical implications</h3>\u0000<p>People in Cohort 2, who were likely to have severe/profound learning disabilities, were less frequently reported to access online community activities than people in Cohort 1, which is likely to exacerbate existing social isolation for this cohort and their family carers. Service providers should seek to ensure equitable access to services and activities for all people with learning disabilities in the event of future lockdowns or pandemics.</p><!--/ Abstract__block -->\u0000<h3>Originality/value</h3>\u0000<p>This is the largest longitudinal study about the impact of the COVID-19 pandemic on health and social care services for adults with learning disabilities in the UK. We primarily collected data directly from adults with learning disabilities and worked with partner organisations of people with learning disabilities and family members throughout the study.</p><!--/ Abstract__block -->","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":"175 2","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138513802","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Commentary on “Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic”","authors":"Lisa Richardson","doi":"10.1108/tldr-12-2021-0037","DOIUrl":"https://doi.org/10.1108/tldr-12-2021-0037","url":null,"abstract":"<h3>Purpose</h3>\u0000<p>The purpose of this paper is to provide a commentary on “Adapted guided self-help booklets for supporting the wellbeing of people with intellectual disabilities during the COVID-19 pandemic” (Jahoda <em>et al.</em>).</p><!--/ Abstract__block -->\u0000<h3>Design/methodology/approach</h3>\u0000<p>This paper considers health and wellbeing for people with intellectual disabilities in the context of public health interventions and public health research.</p><!--/ Abstract__block -->\u0000<h3>Findings</h3>\u0000<p>Consideration is given to the evidence base for self-management, self-help and behavioural change interventions and the need to consider systemic support for promoting the health and wellbeing of people with intellectual disabilities.</p><!--/ Abstract__block -->\u0000<h3>Originality/value</h3>\u0000<p>Guided self-help and self-management techniques have a role in the health promotion of people with intellectual disabilities. Reciprocal sharing between public health researchers and intellectual disability researchers is needed to further the research, policy and service agenda to better promote health and wellbeing for this underserved group.</p><!--/ Abstract__block -->","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":"65 6","pages":""},"PeriodicalIF":0.6,"publicationDate":"2022-01-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138513812","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Commentary on: “Lost in the literature”. People with intellectual disabilities who identify as trans: a narrative review","authors":"Tessa-May Zirnsak","doi":"10.1108/tldr-11-2021-0034","DOIUrl":"https://doi.org/10.1108/tldr-11-2021-0034","url":null,"abstract":"\u0000Purpose\u0000This paper aims to discuss the barriers that people with intellectual disabilities face to come out as transgender in the context of a paucity of research with or about this group.\u0000\u0000\u0000Design/methodology/approach\u0000The commentary and brief overview of trans participation in literature on people with intellectual disabilities presented in this paper is informed by a Queer Theory and Critical disabilities Studies approach.\u0000\u0000\u0000Findings\u0000Researchers in this area are correct that there is insufficient literature that addressed the experiences of trans people with intellectual disabilities; however, for trans people with intellectual disabilities to be involved in research they must first be safe to self-identify and come out in their communities and services. Existing research suggests that people with intellectual disabilities may face additional barriers to self-identifying as LGTBQ, and that for those who have claimed a trans identity, it is not safe to come out.\u0000\u0000\u0000Social implications\u0000There is a need for researchers and professional and lived experience experts to be engaged in policy and social research with the aim of creating safe spaces and communities for people with intellectual disabilities to explore and affirm their gender.\u0000\u0000\u0000Originality/value\u0000There are no published papers that redirect focus from a paucity of research into the experiences of trans people with intellectual disabilities towards addressing why trans people with intellectual disabilities may choose not to come out in a context of hostility towards transgender identity in disabilities services.\u0000","PeriodicalId":54179,"journal":{"name":"Tizard Learning Disability Review","volume":" ","pages":""},"PeriodicalIF":0.6,"publicationDate":"2021-12-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46610544","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}