Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Parents helping a child with disability learn at home during COVID-19: Experiences from Slovenia and Canada","authors":"Majda Schmidt,&nbsp;Mateja Šilc,&nbsp;Ivan Brown","doi":"10.1111/jppi.12456","DOIUrl":"10.1111/jppi.12456","url":null,"abstract":"<p>The COVID-19 pandemic caused much disruption in many global sectors, including education where schools were closed in most countries and children had to learn remotely from home. This was particularly challenging for children with special learning needs and disabilities, often already somewhat marginalized, as they were more likely to be left behind and less able to adapt easily to remote online learning. This study inquired into the experiences of 67 parents from Slovenia and 15 parents from Canada who helped their children with special learning needs or disabilities learn remotely. Parents in both countries identified several specific advantages and disadvantages to learning remotely from home. The Slovenian children spent more hours per day at their lessons and attended more lessons than the Canadian children. Both samples of parents received some support from their schools, although the Slovenia parents perceived these as more satisfactory. This study provides a unique opportunity to study the effects of remote learning during a prolonged crisis situation, and it provides valuable lessons for how both families and school personnel can work to improve the potential educational experiences of students who are required to learn remotely. A 12-point framework for planning for future emergencies is provided.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"216-227"},"PeriodicalIF":1.7,"publicationDate":"2023-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12456","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49211096","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":"Family support IDD interventions in culturally diverse and underserved communities","authors":"Sarah Dababnah,&nbsp;Sandy Magaña","doi":"10.1111/jppi.12454","DOIUrl":"10.1111/jppi.12454","url":null,"abstract":"","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"4-6"},"PeriodicalIF":1.7,"publicationDate":"2023-03-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44193272","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":"Health care for people with intellectual disability in Spain","authors":"L. E. Gómez,&nbsp;M. L. Morán,&nbsp;P. Solís,&nbsp;P. Pérez-Curiel,&nbsp;A. Monsalve,&nbsp;P. Navas","doi":"10.1111/jppi.12455","DOIUrl":"10.1111/jppi.12455","url":null,"abstract":"<p>We describe the healthcare system for people with intellectual disability (ID) in Spain. First, we provide general population statistics before focusing on the most recent prevalence data related to people with disability in general, and with ID in particular. We also discuss how health care is organized. Most of the Spanish population is covered by the public healthcare system, which is structured into primary care (first-level health services; easily accessible and capable of tackling the most common ailments) and specialized care (second-level health services; comprising the most complex and costly diagnostic and therapeutic resources). We then explain Spain's primary legislation that promotes the rights of people with disabilities, highlighting the importance of the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which is enshrined in the Spanish General Law on the Rights of People with Disabilities and their Social Inclusion (Royal Legislative Decree 1/2013). Second, we describe the organization of Spanish disability support and health services, whose regulation is highly complex given that the autonomous regions set their own rules about coverage, services, and financing. Third, we present some recent studies that allow a better understanding of health care for people with ID in Spain, including a summary of the ongoing #Rights4MeToo project. We report specific data on the right to habilitation/rehabilitation. People with ID and professionals providing them with supports agreed that the most problematic aspects of health care for people with ID were the lack of: coordination across services, user-friendly information to maintain or improve their health, psychological treatments, preventive medical check-ups, and knowledge about disability among health professionals. There is a need to give people with ID priority access to services, reduce waiting times, increase the length of medical appointments, and create protocols and prevention campaigns targeting them.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"21 1","pages":""},"PeriodicalIF":1.7,"publicationDate":"2023-02-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12455","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46569264","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":"Siblings of children with intellectual and developmental disabilities: Quality of life perceptions from Catalonia","authors":"Olga Múries-Cantán,&nbsp;Climent Giné,&nbsp;Roy I. Brown,&nbsp;Natasha Baqués Aguiar,&nbsp;Alice P. Schippers","doi":"10.1111/jppi.12451","DOIUrl":"10.1111/jppi.12451","url":null,"abstract":"<p>Siblings' interactions and shared experiences influence their perceptions of quality of life. Recently, research about siblings of children with intellectual and developmental disabilities has been significantly expanded but data from Southern European countries is still missing. This research was carried out in Catalonia (northeast Spain) a region in the Mediterranean area with its own shared culture, language and traditions that equally embraces an important diversity of ethnicities and cultures. The main aim was to collect siblings' perceptions on quality of life from siblings' own voices. Semi-structured interviews were conducted with 14 siblings aged 5–11 years old and thematically analyzed using the following domains: joint activities; mutual understanding; private time; acceptance; forbearance; trust in well-being; exchanging experiences; social support; and dealing with the outside world. Siblings reported a variety of experiences in relation to having a brother or a sister with intellectual and developmental disabilities (I/DD), including unique characteristics of their quality of life perceptions. There were also some common factors amongst the siblings' experiences, such as the importance of being able to communicate properly with their brothers or sisters with I/DD. It emerged that having their own time with their parents was an important factor in their own development. This research echoes some siblings' beliefs that society needs to provide a conscious revision of values and ideas regarding disability. Implications for research and practice are described.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"192-204"},"PeriodicalIF":1.7,"publicationDate":"2023-01-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12451","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42770901","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":"Narrowed lives: Meaning, moral value and profound intellectual disability","authors":"James B. Gould","doi":"10.1111/jppi.12450","DOIUrl":"10.1111/jppi.12450","url":null,"abstract":"","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 3","pages":"336-337"},"PeriodicalIF":1.7,"publicationDate":"2023-01-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44951927","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":"Some observations on remote delivery of eye-movement desensitisation and reprocessing to people with intellectual disabilities","authors":"Gemma Unwin,&nbsp;Biza Stenfert-Kroese,&nbsp;Gemma Rogers,&nbsp;Sophie Swain,&nbsp;Steve Hiles,&nbsp;Clair Clifford,&nbsp;Derek Farrell,&nbsp;Paul Willner","doi":"10.1111/jppi.12452","DOIUrl":"10.1111/jppi.12452","url":null,"abstract":"<p>It is increasingly recognised that many people with intellectual disabilities suffer from post-traumatic stress disorder (PTSD). Eye-movement desensitisation and reprocessing (EMDR) has been proposed as a potentially helpful intervention that is less reliant on verbal skills than other effective treatments for PTSD and therefore could be more effective than verbal interventions for people with intellectual disabilities. The Trauma-AID project is a randomised clinical trial (RCT) evaluating the effectiveness of a bespoke EMDR protocol for adults with intellectual disability and PTSD, which incorporates a prolonged phase of Psycho-Education and Stabilisation (PES) prior to the trauma confrontation phase of EMDR. The COVID-19 pandemic struck during the feasibility phase of the Trauma-AID project, necessitating a second feasibility study to evaluate the acceptability and feasibility of remote or hybrid delivery of the PES + EMDR protocol. To this end, we conducted two online surveys of therapists followed by interviews with clients, carers and senior therapists. The surveys were analysed descriptively. Content analysis was used for client and carer interviews, and framework analysis for therapist interviews. All stakeholders reported positive experiences of EMDR; however, some challenges were identified. The majority of clients, carers and therapists interviewed reported that the intervention, whether PES alone or the full PES-EMDR package, had improved symptoms of PTSD and psychological well-being, and carers also reported decreases in challenging behaviour. A full account of the data is provided in four Supplementary Digital files. PES-EMDR therapy appears both feasible and acceptable for clients with intellectual disabilities and therapists, whether delivered face-to-face or in a remote or hybrid mode, though remote working appears easier for the PES phase than the EMDR phase of the intervention.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"205-215"},"PeriodicalIF":1.7,"publicationDate":"2023-01-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12452","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48940447","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":"Integrated mental health treatment guidelines for prescribers in intellectual and developmental disabilities","authors":"Andrea Caoili,&nbsp;Melanie Hecker,&nbsp;Susan Klick,&nbsp;Jennifer McLaren,&nbsp;Joan Beasley,&nbsp;Jarrett Barnhill","doi":"10.1111/jppi.12447","DOIUrl":"10.1111/jppi.12447","url":null,"abstract":"<p>Few healthcare providers receive guidance on the unique needs of persons with intellectual and developmental disabilities and mental healthcare needs. Our aim was to develop a tool for health care providers to use as a guide to address the complex needs of this patient population. The development of the <i>Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities</i> consisted of five steps: focus groups, draft of the guidelines, evaluation of the guidelines, finalization, and dissemination of the guidelines. The focus groups revealed themes in five domains: (1) relationships, communication, and openness; (2) understanding the person, their environment, and culture; (3) importance of an integrated care and wellness approach; (4) consideration of treatment modifications; (5) recommendations from focus group participants regarding the guidelines. These focus groups informed the development of the guidelines. Forty-three prescribers evaluated the guidelines noting multiple strengths and some recommendations. Based on this feedback the guidelines were modified as needed, finalized, and disseminated. This paper describes the development of the <i>Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities</i>. An evidence-informed, easy-to-use, web-based guide with links to best practice resources. These guidelines incorporate integrated health, other mental health approaches, and the input of patients.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"164-176"},"PeriodicalIF":1.7,"publicationDate":"2022-12-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44261485","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":"‘Say hi to the lady on the television’: A review of clinic presentations and comparison of telepsychiatry and in-person mental health assessments for people with intellectual disability in rural New South Wales","authors":"Madeline Delves,&nbsp;Georgina M. Luscombe,&nbsp;Rodney Juratowitch,&nbsp;Radha Srikanth,&nbsp;Julian N. Trollor,&nbsp;Dale Brown,&nbsp;Angela Embury","doi":"10.1111/jppi.12448","DOIUrl":"10.1111/jppi.12448","url":null,"abstract":"<p>People with intellectual disabilities (ID) experience high levels of psychiatric comorbidity and difficulties accessing services, particularly in rural areas. An Intellectual Disability Mental Health Outreach Clinic was established to provide specialised psychiatric care in rural Australia through telepsychiatry and in-person assessment. The study aims were to (i) contrast the characteristics of clinic attendees assessed by telepsychiatry or in-person; (ii) assess the feasibility of care delivery by synchronous videoconference (telepsychiatry) or in-person; and (iii) assess acceptability to, and experiences of, participating carers (family members, non-government organisation workers or Community Mental Health Case Managers). An audit of clinical records was conducted of clients reviewed by the Clinic between August 2018 and April 2021. A survey of carers, either employed or family members, evaluated Clinic acceptability and experiences with the Clinic assessment, and as well as perceptions of thoroughness, accessibility, and ease. Of 145 people with ID, 46% were reviewed by telepsychiatry. These 67 telepsychiatry clients were more likely to have milder ID (<i>p</i> &lt; 0.01) and were seen more frequently (<i>p</i> &lt; 0.05) than the 78 clients with in-person reviews. Results from the carer survey (31.7% response rate, <i>n =</i> 46/145) indicated high overall service acceptability, with telepsychiatry perceived to offer more convenient appointment times (91% agreed vs. 75% of in-person, <i>p</i> &lt; 0.05). The high uptake of telepsychiatric review indicates that it is feasible and acceptable to carers of people with ID and comorbid mental health concerns. Telepsychiatry is a potential tool to address equity of access to mental health services for people with ID—particularly those from disadvantaged and rural populations.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"177-191"},"PeriodicalIF":1.7,"publicationDate":"2022-12-05","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12448","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42048524","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":"Tribute to Philip W. Davidson (1942-2022)","authors":"Trevor R. Parmenter","doi":"10.1111/jppi.12446","DOIUrl":"10.1111/jppi.12446","url":null,"abstract":"","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"338-339"},"PeriodicalIF":1.7,"publicationDate":"2022-11-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48418102","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":"Designing genetic studies for people with intellectual disabilities: Practical lessons from a pilot study","authors":"Adrian Sellers,&nbsp;Sharon Hudson,&nbsp;Joanna Ledger,&nbsp;Charlotte Moorehouse,&nbsp;Charlotte Young,&nbsp;Ian Groeber,&nbsp;Bridget Knight,&nbsp;Jonathan Mill,&nbsp;Jon Allard,&nbsp;Rohit Shankar","doi":"10.1111/jppi.12445","DOIUrl":"10.1111/jppi.12445","url":null,"abstract":"<p>Genetic variations are overrepresented in people with intellectual disability (PwID), particularly those with physical and mental health co-morbidities, but remain significantly under-diagnosed. Lack of suitable research studies, a natural extension of the complexities posed of consenting and recruitment is considered culpable. There is a resultant dearth of evidence on establishing bespoke genetic studies for adult PwID. This report outlines the challenges faced in the implementation and administration of a pilot genetic study for adult PwID hoping to better inform future genetic study designs for PwID. Adult participants with a diagnosis of ID (ICD10 F70-F73) and epilepsy (ICD10 G40) were recruited to The <b>P</b>en<b>i</b>nsula study e<b>x</b>ploring genomic stratification in <b>i</b>ntell<b>e</b>ctual disability and epilepsy via the ethically approved Royal Devon and Exeter Tissue Bank (RDETB) (16/SC/016). Managed within the National Institute for Health Research (NIHR) Exeter Clinical Research Framework, the RDETB was set up to proactively collect and store ‘spare’ tissue from routine clinical procedures such as venepunctures for routine good practice biochemistry monitoring. Participants who satisfied the criteria for the need for routine bloods to monitor their general health were identified to be invited for participation. From October 2017 to March 2020 from a total caseload of 375 PwID and epilepsy, 291 were screened (77.6%), 116 (39.9%) identified as potentially eligible and sent study information and genetic samples obtained from 30 (8%). Analysis showed 75% of PwID had some biochemical abnormalities requiring further medical attention. The recruitment was influenced by the clinical care set up in implementing the sanctioned ethics. However, where bloods were achieved it proved to be beneficial in identifying hitherto undiagnosed medical problems. While the challenges to gain consent, are considerable, the reasonable adjustments needed to facilitate participation and the immediate clinical benefits where engagement was successful are significant.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"158-163"},"PeriodicalIF":1.7,"publicationDate":"2022-10-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12445","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42002641","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}