Journal of Policy and Practice in Intellectual Disabilities最新文献

{"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}

{"title":"Does family quality of life get better as the years go by? A comparative mixed-methods study between early years and school-aged children with disability in Australia","authors":"Anoo Bhopti,&nbsp;Ted Brown,&nbsp;Primrose Lentin","doi":"10.1111/jppi.12433","DOIUrl":"10.1111/jppi.12433","url":null,"abstract":"<p>This Australian study compared perspectives of family quality of life (FQOL) of parents of preschool children attending early childhood intervention services (ECIS) with parents of school-aged children with disability. It examined the relationships between disability-related services, parent occupations, and FQOL. Two mixed-methods studies with 122 participants and 24 in-depth interviews were conducted. The first study included 72 parents attending ECIS. The second study included 50 parents of school-aged children with disability. The quantitative aspect (<i>N</i> = 122) used the Beach Center FQOL survey and a demographic questionnaire. Twelve semistructured interviews were conducted for each study. Spearmann's Rho correlations for quantitative data analysis and thematic analysis for qualitative data were used for each study. A two-way analysis of variance along with a qualitative comparative analysis were conducted to compare the findings from both studies. Results indicated lower scores on FQOL in parents with school-aged children when compared with the ECIS group. Loss of work, lack of time for caregiver health, lack of respite, and interim residential care had detrimental impacts on parents' long-term well-being. Based on the results, it can be concluded that the hardships and challenges of caregiving increase as the child gets older; however, positive adaptations, beliefs, and positive transformations help FQOL. Family-centered care and supportive practitioners assist FQOL and are highly recommended.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"379-395"},"PeriodicalIF":1.7,"publicationDate":"2022-06-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12433","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46124906","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":"Culturally adapting a parent psychoeducational intervention for Chinese immigrant families of young children with autism spectrum disorder","authors":"Yue Xu,&nbsp;Feifei Chen,&nbsp;Mansha Mirza,&nbsp;Sandy Magaña","doi":"10.1111/jppi.12432","DOIUrl":"10.1111/jppi.12432","url":null,"abstract":"<p>Asian children with autism are underdiagnosed and underserved compared to White children in the United States. There is a critical need for culturally appropriate interventions addressing these health disparities. The current study aims to present the cultural adaptation process of an empirically supported parent education intervention, “Parents Taking Action” (PTA), for low-income Chinese immigrant families of young children with autism. Six Chinese immigrant parents of children with autism and six providers serving this population were recruited to participate in two separate focus groups in a US Midwestern city. Focus group data were transcribed and then analyzed using deductive qualitative analysis. Two bilingual researchers coded the data independently using a predeveloped coding list. Parents provided insights on the intervention structure and contextual elements such as cultural stigma against autism while providers put more emphasis on content modification. Parents underscored the benefits of delivering the intervention in group format as opposed to one-on-one family visits. This preference for group delivery was based on contextual issues such as feeling isolated from extended family and community members who do not have much knowledge of autism. Parents and providers agreed that it is important to deliver the intervention in community settings instead of clinics to enhance accessibility. As we tested out the predeveloped coding list, we synthesized a process of integrating community input into modifications of the original intervention. To our knowledge, this is the first culturally adapted intervention targeting Chinese immigrant families of young children with autism. The lack of culturally and linguistically appropriate interventions for Chinese immigrant families of children with autism is alarming given the fast growth of this population. The process of culturally adapting “PTA” for Chinese immigrant families of children with autism provides a roadmap on how to translate community input into steps of adaptations.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"58-72"},"PeriodicalIF":1.7,"publicationDate":"2022-06-15","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12432","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42086605","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":"Emerging from the shadows: Digital stories of self-advocates with intellectual disabilities","authors":"Kathy Ellem,&nbsp;Paul Harris,&nbsp;Iva Strnadová","doi":"10.1111/jppi.12426","DOIUrl":"10.1111/jppi.12426","url":null,"abstract":"<p>People with intellectual disabilities tend to be subjugated to social roles which make them feel invisible and misunderstood. This study examines the digital stories of self-advocates with intellectual disabilities and explores their experiences of becoming leaders. The digital stories of self-advocates show how people made themselves visible and heard to others through their individual questioning, forming important alliances and collective achievements. Their stories, articulated through the digital platform, were analysed using constructivist grounded theory. These digital stories demonstrated how individual self-advocates overcame adversity and found ways to have their voices heard and personal problems addressed. Each self-advocate possessed the insight to question unfair treatment and discrimination, and in turn was strengthened in their efforts to make change by becoming involved in a self-advocacy group. Self-advocacy can nurture both individual leadership capacities in people with intellectual disabilities and facilitate a safe space for people to come together, support one another and make positive change. Digital stories can illustrate how people with intellectual disabilities become self-advocates. The use of this technology has the potential to strengthen advocacy efforts.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"360-369"},"PeriodicalIF":1.7,"publicationDate":"2022-06-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12426","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48781773","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}