Journal of Policy and Practice in Intellectual Disabilities最新文献

{"title":"Mexican–American caregivers' perceptions of a culturally adapted transition planning program for youth with autism","authors":"Janeth Aleman-Tovar,&nbsp;Meghan M. Burke,&nbsp;Edwin Monárrez","doi":"10.1111/jppi.12442","DOIUrl":"10.1111/jppi.12442","url":null,"abstract":"<p>The transition from adolescence to adulthood is difficult for individuals with autism spectrum disorder (ASD) and their families because they must learn to navigate the complex adult disability service delivery system. For Latinx (vs. White) families of youth with ASD, this period is especially difficult because of the systemic barriers (e.g., language and cultural differences) they face when accessing services. To support Latinx families, effective and culturally responsive supports (e.g. culturally tailored programs) are critical. To this end, the purpose of this study is to describe the cultural adaptation of a transition planning program (i.e., ASSIST) for Latinx families of youth with ASD. First, we culturally adapted the curriculum using the Ecological Validity Framework (Bernal et al., 1995) and the Cultural Sensitivity (CS) model (Resnicow et al., 1999). Then, we presented the culturally adapted curriculum to eight Mexican–American caregivers of youth with ASD. Specifically, we conducted three individual interviews with each participant (<i>N</i> = 24 interviews altogether) to examine their perceptions of the six sessions of the culturally adapted curriculum. Based on their feedback, changes were made to the curriculum. Overall, participants reported positive perceptions of the culturally adapted curriculum, but suggested the following recommendations: include information related to mixed-status families, add information about guardianship, and use the translation technique of borrowing for specific terms. Based on the findings, implications for research and practice are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"104-116"},"PeriodicalIF":1.7,"publicationDate":"2022-10-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44189865","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":"Documenting the advocacy experiences among eight Latina mothers of children with intellectual and developmental disabilities","authors":"Kristina Rios,&nbsp;Janeth Aleman-Tovar","doi":"10.1111/jppi.12444","DOIUrl":"10.1111/jppi.12444","url":null,"abstract":"<p>Internationally, it has been recognized that parent involvement is an essential component of the special education process for children with intellectual and/or developmental disabilities (IDD). Parent involvement often includes parents advocating for their children. However, many parents face barriers when advocating to obtain appropriate special education services for their children with IDD. In the United States, Latinx families face greater systemic barriers (e.g., language and cultural differences) to access services for their own children with IDD. To this end, parents may turn to parent advocacy training programs to learn about special education and feel empowered to advocate for school services for their own children and other families of children with disabilities. Yet, it is unclear how Latinx families advocate for services for their own children and for other Latinx families of children with disabilities after attending an advocacy program. We designed a study to explore the advocacy experiences of eight Latinx families one year after attending an advocacy program. Participants reported that they used three advocacy strategies when advocating for their own children with disabilities: knowledge of special education law, non-adversarial advocacy strategies, and requests for data. Notably, some participants reported not having an advocacy experience due to the COVID-19 pandemic. Implications for research and practice are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"89-103"},"PeriodicalIF":1.7,"publicationDate":"2022-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46871012","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":"A study of caregiver support services: Perspectives of family caregivers of persons with intellectual disabilities in Singapore","authors":"Vivienne C. Riches,&nbsp;Patricia O'Brien,&nbsp;Vimallan Manokara,&nbsp;Arne Mueller","doi":"10.1111/jppi.12441","DOIUrl":"10.1111/jppi.12441","url":null,"abstract":"<p>Most people with intellectual disabilities in Singapore live with family and are supported by family caregivers. Many caregivers lack the awareness, skills and resources needed for their caregiving role. A caregiver support service designed to build the capability of family caregivers serving children and adults with intellectual disabilities was evaluated after 2 years of operation to ascertain the level of caregiver coping and resilience, perceived impact of strategies for emotional support, and satisfaction with a range of support services and gaps in service. Family caregivers were surveyed regarding satisfaction with services received using the Client Satisfaction Questionnaire (CSQ-8) and feedback from activities and events. Their coping and resilience were measured with the Coping Competence Questionnaire (CCQ). Qualitative data from caregiver interviews and staff focus groups were analysed for key themes that were triangulated and converged with other findings. Satisfaction, better coping and resilience were associated with specific support services. Key themes emerged around several effective supports and areas of unmet needs across the lifespan. Limitations and areas for improvement were identified to meet a broader range of caregivers. Targeted family support services can enhance the well-being of caregivers supporting people with intellectual disabilities (ID) across the lifespan. The results inform policymakers and support agencies that support of the family, not just the person with ID, is an important factor and needs to be incorporated at the heart of the design and development of any inclusive community living in Singapore.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"117-131"},"PeriodicalIF":1.7,"publicationDate":"2022-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12441","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46099424","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":"Good health care for a good life? The case of down syndrome","authors":"Francine A. van den Driessen Mareeuw,&nbsp;Antonia M. W. Coppus,&nbsp;Diana M. J. Delnoij,&nbsp;Esther de Vries","doi":"10.1111/jppi.12443","DOIUrl":"10.1111/jppi.12443","url":null,"abstract":"<p>People with Down syndrome have complex health care needs which are not always fully met. Health care improvements are required to better meet these needs. Quality indicators are an important tool for improving health care. However, quality indicators for health care for people with Down syndrome are scarce. Existing quality indicators focus on medical (physical) needs or the clinical setting, even though it is acknowledged that quality measures should reflect the <i>total</i> of quality aspects relevant to the population at stake, which may encompass aspects <i>beyond</i> the medical domain. These aspects beyond the medical domain are the focus of the current paper, which aims to provide insight into the way people with Down syndrome live their lives, how health care may fit in, and how this may impact the development of quality indicators. The paper is based on data originating from interviews with people with Down syndrome and their parents as well as focus groups with support staff members working in assisted living facilities for people with intellectual disability. The data revealed a lot of variation in how people with Down syndrome live their lives. Nevertheless, we were able to identify 11 topics, which we grouped into three overarching themes: (1) Being different yet living a normal life; (2) Down syndrome-(un)friendly society and services; and (3) family perspective. The variation in our data stresses the importance of health care that takes a person's life into account beyond the medical domain, as exemplified by the identified topics. Our findings also show that a good life is not merely depending on good health care supported by well-defined quality indicators, but on (support in) all life domains.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"147-157"},"PeriodicalIF":1.7,"publicationDate":"2022-09-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12443","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42920244","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":"Nursing staff and nursing managers' experiences of using the interRAI ID instrument in assessing the service needs of persons with intellectual disabilities in housing services","authors":"Hanna Kangasniemi,&nbsp;Iina Ryhtä,&nbsp;Minna Stolt","doi":"10.1111/jppi.12438","DOIUrl":"10.1111/jppi.12438","url":null,"abstract":"<p>The assessment of service needs among persons with intellectual disabilities (ID) is important to identify a person's needs, strengths and preferences. One commonly used instrument for service needs assessment is Resident Assessment Instrument Intellectual Disabilities (interRAI ID). However, there is limited evidence of the experiences of using interRAI ID for assessing the service needs of persons with ID from nursing staff and nursing managers' perspective. The aim of this study was to explore the suitability of the interRAI ID instrument (version Fi2020.1) for assessing the service needs and functional development of persons with ID as described by nursing staff and nursing managers working in a housing service. The data were collected using focus group interviews (<i>n</i> = 3) in May 2020. The interviews were conducted in units providing housing services for persons with ID (<i>n</i> = 6). The interview groups consisted of nursing staff (<i>n</i> = 22) and nursing managers (<i>n</i> = 6). The data were analysed using inductive content analysis. The experiences of nursing staff and nursing managers fell under three main categories: (1) the assessment process; (2) possibilities to use the assessment data and (3) implementation experience. The interRAI ID instrument is suitable and useful for the systematic assessment of the health, functional capacity and service needs of persons with ID. In the future, effective and evidence-based methods are needed to promote the assessment skills of nursing staff and to use assessment data in nursing practice as well as nursing management.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 2","pages":"136-146"},"PeriodicalIF":1.7,"publicationDate":"2022-09-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12438","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47963814","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":"Best practices in evaluating work integration social enterprises for persons with intellectual disabilities: A scoping review","authors":"Rosemary Lysaght,&nbsp;Golnaz Ghaderi,&nbsp;Peter Milley,&nbsp;Patrick R. Labelle","doi":"10.1111/jppi.12439","DOIUrl":"10.1111/jppi.12439","url":null,"abstract":"<p>Social enterprise is emerging as a promising means of creating flexible employment transitions for people with intellectual disabilities. It has been adopted as an option largely in response to the extended periods of work adjustment and ongoing supportive work environments typical for this population, as well as challenges in identifying suitable and satisfying job matches in the conventional labour market. Creation of meaningful and sustainable employment in social enterprises resides at the intersection of social programming and business management, such that developers must attend to employee needs from a human resource and skills development perspective, while equally attending to sound business management practices. This scoping review aimed to identify best practices for evaluating emerging work integration social enterprises using established program evaluation methods as a means of guiding and monitoring practice. Sixteen studies met study selection criteria, and while not directly addressing the issue of evaluation quality, revealed a number of principles and practices for consideration by evaluators. Implications for evaluation practice are highlighted.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"431-440"},"PeriodicalIF":1.7,"publicationDate":"2022-09-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46165718","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":"Living with down syndrome, Manuel I. Guerrero, Roy I. Brown, Paul Campero, Gare Fabila, Rhonda Faragher, Margaret Krykou, Robert L Schalock, Miguel AS, Miguel Verdugo & Karen Watchman. Kindle Direct Publishing, 2019, 307 pp. A$16.43","authors":"Trevor R. Parmenter","doi":"10.1111/jppi.12437","DOIUrl":"10.1111/jppi.12437","url":null,"abstract":"","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 3","pages":"333"},"PeriodicalIF":1.7,"publicationDate":"2022-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43714430","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":"Using a self-guided app to provide communication strategies for caregivers of young children with developmental disorders: A pilot investigation","authors":"Mary Ann Romski,&nbsp;Rose A. Sevcik,&nbsp;Marika King,&nbsp;Gianluca DeLeo,&nbsp;Lee Branum-Martin,&nbsp;Juan Bornman","doi":"10.1111/jppi.12436","DOIUrl":"10.1111/jppi.12436","url":null,"abstract":"<p>One important evidence-based component of early communication interventions in high-income countries is teaching parents and other primary caregivers to provide communication opportunities in daily activities to stimulate the development of beginning communication skills. To address some of the barriers to communication interventions for children with developmental disorders (DD) in rural South Africa, we developed a prototype Web-based self-guided app for caregivers to use at home with their children with DD who were at the beginning stages of communication development. The purpose of this study is to examine how this app intervention functioned for caregivers and its secondary effects on their children. Fifty-one caregiver-child dyads were randomly assigned to either a typical care intervention group (a 30-minute hospital-based intervention once a month) or the self-guided mobile health technology (MHT) app plus the typical care intervention. We assessed both the caregivers and their children. The majority of the 27 caregiver-child dyads (81%) assigned to the app group used the app and completed a mean of 35.8 sessions across the 48 sessions (mean range = 5.08–15.75). Eighty percent of these caregivers employed the “help” function of the app (<i>M</i> per caregiver = 9.89). The caregivers who completed 44–48 sessions reported that more than half of the children moved from pre-symbolic forms of communication (e.g., crying) to symbolic forms of communication (e.g., words) by the end of the intervention. Compared to the typical care group, the caregivers perceived that their children's success increased even though their difficulties remained stable. The app group showed a very modest gain in expressive language while the typical care group did not. The findings suggest that the self-guided app framework shows promise as a supplement to traditional monthly speech-language intervention in South Africa.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"73-88"},"PeriodicalIF":1.7,"publicationDate":"2022-07-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12436","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"49335814","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":"Physical activity and physical and mental health in middle-aged adults with Down syndrome","authors":"Victoria Fleming,&nbsp;Brianna Piro-Gambetti,&nbsp;Benjamin Handen,&nbsp;Bradley T. Christian,&nbsp;Annie Cohen,&nbsp;Dana Tudorascu,&nbsp;David T. Plante,&nbsp;Ozioma Okonkwo,&nbsp;Sigan L. Hartley","doi":"10.1111/jppi.12434","DOIUrl":"10.1111/jppi.12434","url":null,"abstract":"<p>Adults with Down syndrome have an increased risk of aging-related physical and mental health conditions and experience them at an earlier age than the general population. There is a need to investigate modifiable lifestyle factors that may reduce risk for these conditions. The present study investigated the associations between physical activity (i.e., sedentary behavior and moderate-to-vigorous activity) assessed via accelerometer across 7 days and caregiver-reported physical and mental health of 66 nondemented middle-aged adults with Down syndrome aged 25–55 years (52% female). Regression analyses indicated that more time spent in moderate intensity physical activity was associated with less risk of sleep apnea (<i>β</i> = −0.031, <i>p</i> = 0.004) and endocrine/metabolic conditions (<i>β</i> = −0.046, <i>p</i> = 0.009), and lower total number of physical health conditions (<i>β</i> = −0.110, <i>p</i> = 0.016) and anxiety disorders (<i>β</i> = −0.021, <i>p</i> = 0.049) after controlling for relevant sociodemographics. After also adjusting for body-mass-index (BMI), the association between time spent in moderate intensity physical activity and sleep apnea (<i>β</i> = −0.035, <i>p</i> = 0.002), endocrine/metabolic conditions (<i>β</i> = −0.033, <i>p</i> = 0.045) and total physical health (<i>β</i> = −0.091, <i>p</i> = 0.026) remained significant. Unexpectedly, time spent in sedentary behavior was negatively associated with musculoskeletal conditions (<i>β</i> = −0.017, <i>p</i> = 0.044). Findings indicate important associations between physical activity in everyday life and the physical and mental health of adults with Down syndrome. Social policies and interventions aimed at reducing time spent sitting around (i.e., sedentary behavior) and encouraging moderate-to-vigorous activity may be a low-burden and low-cost mechanism for fostering healthy physical and mental aging in the Down syndrome population.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"408-418"},"PeriodicalIF":1.7,"publicationDate":"2022-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9788305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9979097","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":"Development and feasibility testing of an evidence-based occupational therapy program for adults with both Down syndrome and dementia","authors":"Sujatha E. Raj,&nbsp;Shylie Mackintosh,&nbsp;Jocelyn Kernot,&nbsp;Caroline Fryer,&nbsp;Mandy Stanley","doi":"10.1111/jppi.12435","DOIUrl":"10.1111/jppi.12435","url":null,"abstract":"<p>This paper describes the development of a home-based occupational therapy intervention program for people with Down syndrome who experience early on-set dementia causing a decline in their performance skills and increasing care dependency on their informal caregivers. A six-step methodological process adapted from the Medical Research Council framework for developing and evaluating complex interventions was formulated to develop an evidence-based occupational therapy program for people with both Down syndrome and dementia and their informal caregivers. The first two steps gathered evidence through systematic reviews of the literature and determined the scope of current occupational therapy practice. The gathered evidence was synthesised in step three to develop a client-centred occupational therapy intervention program for persons with both Down syndrome and dementia and their informal caregivers. In steps four and five, opinions were sought from occupational therapists working in this area of practice on the content of the developed program and its feasibility within the Australian disability services context. The final testing step can be conducted in the future using a single-case experimental design study. It is important to use rigorous frameworks and gather comprehensive evidence using multiple methods to develop interventions for small heterogeneous populations. The developed occupational therapy program for persons with both Down syndrome and dementia and their informal caregivers appears feasible to be implemented within the Australian disability services; however, funding limitations imposes barriers for its implementation in clinical practice.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"396-407"},"PeriodicalIF":1.7,"publicationDate":"2022-06-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12435","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46484982","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}