Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Spirituality, disability, and quality of life","authors":"Erik W. Carter","doi":"10.1111/jppi.12458","DOIUrl":"10.1111/jppi.12458","url":null,"abstract":"<p>Promoting the flourishing of people with intellectual and developmental disabilities (IDD) requires consideration of the same breadth of life domains that might matter to any other person. Like anyone else, many people with IDD (as well as their families) consider spirituality and religious participation to be central to their personal thriving. Yet, this dimension of their lives is often overlooked or ignored in the areas of assessment, planning, practice, and support. This article addresses the salience of spirituality and religion; their impact on QOL; the complexities of addressing these areas among people with IDD; the ways in which they can be conceptualized and assessed; and implications for policy and practice.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-04-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12458","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45036843","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":"The development of a trauma informed care framework for residential services for adults with an intellectual disability: Implications for policy and practice","authors":"Paddy McNally,&nbsp;Laurence Taggart,&nbsp;Mark Shevlin","doi":"10.1111/jppi.12457","DOIUrl":"10.1111/jppi.12457","url":null,"abstract":"<p>Trauma informed care has become an evidenced based approach for inpatient and residential services for people in the general population who are likely to have been impacted by trauma. Given the increased vulnerability to psychological trauma for adults with an intellectual disability, it should follow that residential services for adults with an intellectual disability would also benefit from a trauma informed care approach. Two focus groups and individual interviews with seven adults with an intellectual disability and six workshops with seven service providers were conducted to co-produce a trauma informed care framework for residential services that was evidence-based and guided by established models (MRC, Developing and evaluating complex interventions, London: MRC &amp; NIHR, 2019; Wight et al., Journal of Epidemiology and Community Health, 70, 520–525, 2016). The framework was developed into four chapters: ‘Setting the context’; ‘Organisational change’; ‘Workforce development’; and ‘Trauma focussed services’. A logic model outlining the mechanisms of change was refined over the course of the co-production workshops. This is the first study to develop and co-produce a trauma informed care framework for residential and supported living accommodation for adults with an intellectual disability. The framework has implications for local policy and practice in its current cultural context. Future development is required to operationalise and test the framework and to explore its adaptability to international contexts.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-04-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12457","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45151350","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":"Enhancing staff capacity to support children with intellectual disability receiving residential services: A realist evaluation of an improvement program","authors":"Pontus Wallin,&nbsp;Christina Petersson,&nbsp;Kristina Areskoug Josefsson,&nbsp;Annika Nordin","doi":"10.1111/jppi.12453","DOIUrl":"10.1111/jppi.12453","url":null,"abstract":"<p>Children with intellectual disability receiving residential support, according to the Swedish Disability Act, need substantial support to cope with everyday life. These children have cognitive and communicative limitations, entailing difficulties for staff in consulting the children regarding their support arrangements. In addition, due to lack of research there are knowledge gaps and uncertainties concerning how staff can provide the children's support. To deliver high qualitative support, research suggests that disability organisations should (1) continuously work with quality improvement, (2) adopt a multi-dimensional framework that explains human functioning and disability as a basis for understanding individual support needs, and (3) use person-centred approaches. Based on these principles, this study has applied a realist evaluation to identify enablers and barriers during the implementation of an improvement programme aimed at improving staff's ability to provide support to children living in special residences.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-03-16","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12453","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44322615","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":"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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":null,"pages":null},"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}