Journal of Policy and Practice in Intellectual Disabilities最新文献

{"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}

{"title":"Perceived stress moderates the relationship between family support and family quality of life among parents of children living with intellectual and developmental disabilities","authors":"Chidozie E. Nwafor,&nbsp;Mirian Ofonedu,&nbsp;Nelson I. Nwankwo,&nbsp;Adaoga Obuna,&nbsp;Paschal Chukwuma Ugwu","doi":"10.1111/jppi.12425","DOIUrl":"10.1111/jppi.12425","url":null,"abstract":"<p>In Nigeria, the prevalence of intellectual and/or developmental disabilities (IDD) is relatively high, and there is no harmonized national policy to subsidize care and to assist families in caring for their children living with IDD. Thus, the increased stress seems to affect psychological and physiological health and puts social and economic pressures on families managing the care needs of their children living with IDD. A high level of family support has been shown to positively affect the family quality of life (FQOL) of individuals with IDD and their family members. Perceived stress may affect the quality of life of parents of children with IDD. What is not clear is how perceived stress can moderate the relationship between family support and FQOL. The present study examined whether perceived stress moderates the relationship between family support and quality of life (FQOL) among 129 parents of children living with IDD. These participants were selected from a daycare school located in Enugu state, Nigeria. They consisted of 95 women and 34 men who were within the age range of 30–55 years, with a <i>M</i> age of 40.16 years and a SD of 9.11. Three sets of instruments were employed for data collection. The results of moderated regression analysis revealed that family support positively predicted FQOL. Perceived stress negatively predicted FQOL. Similarly, perceived stress moderated the relationship between family support and FQOL. Our findings highlight the importance interventions that target stress as a risk factor that may lead to low FQOL and family support as a protective factor that decreases the negative effect of perceived stress on FQOL. Creating interventions and policies that support adequate family support for parents caring for children with IDD may promote their FQOL.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"370-378"},"PeriodicalIF":1.7,"publicationDate":"2022-05-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48446367","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":"Parents taking action adapted to parents of Black autistic children: Pilot results","authors":"Sarah Dababnah,&nbsp;Irang Kim,&nbsp;Sandy Magaña,&nbsp;Yan Zhu","doi":"10.1111/jppi.12423","DOIUrl":"10.1111/jppi.12423","url":null,"abstract":"<p>There is a dearth of culturally relevant, family-centered programs for parents raising Black autistic children, despite significant racial disparities in autism diagnoses and service access. Using a mixed-methods convergent study design, we report qualitative and quantitative findings from a pilot trial of a peer-to-peer program, <i>Parents Taking Action (PTA)</i>, adapted to primary family caregivers of Black autistic children with or at increased likelihood for autism. We aimed to understand the feasibility of delivering <i>PTA</i> with fidelity to the manual; participants' acceptability of program strategies; and pre–post changes in child, parent, and family outcomes. Three peer mentors (“Parent Leaders”) delivered the 14-session intervention to seven participants. All Parent Leaders and participants were mothers of Black autistic children. We interviewed participants and Parent Leaders regarding program content and outcomes. We also collected fidelity checklists and pre–post, parent-report measures on autism knowledge, family outcomes (e.g., advocacy), stress, depression, and child behavior. Parents reported on program acceptability at post-intervention only. We found the Parent Leaders delivered the program with overall high levels of fidelity, based on our observations and Parent Leaders' self-reported checklists. Participants reported high acceptability of the intervention strategies and provided feedback on methods to improve application of the content. We found statistically significant pre–post quantitative improvements in parent-reported knowledge of their rights and child advocacy, autism knowledge, and child social competence. Participants and Parent Leaders expanded on these changes in interviews, and identified improvements in autism knowledge, parent stress and depression, family outcomes, and child behavior related to program participation. We conclude <i>PTA</i> is a promising, culturally and contextually relevant intervention for parents of Black autistic children. A randomized controlled trial is needed to rigorously evaluate changes in child, parent, and family outcomes.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"18-32"},"PeriodicalIF":1.7,"publicationDate":"2022-04-20","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47295709","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":"‘In the beginning it was difficult but things got easier’: Service use experiences of family members of people with disability from Iraqi and Syrian refugee backgrounds","authors":"Angela Dew,&nbsp;Caroline Lenette,&nbsp;Ruth Wells,&nbsp;Maree Higgins,&nbsp;Tadgh McMahon,&nbsp;Mariano Coello,&nbsp;Shakeh Momartin,&nbsp;Shanti Raman,&nbsp;Helen Bibby,&nbsp;Louisa Smith,&nbsp;Katherine Boydell","doi":"10.1111/jppi.12424","DOIUrl":"10.1111/jppi.12424","url":null,"abstract":"<p>A 2012 change in Australia's immigration policy saw increased resettlement of refugees with disability, with a large number fleeing political instability in Iraq and Syria. The evidence on service disparities for resettled refugees with disability and their families is sparse. The study aim was to explore, from multiple stakeholder perspectives, the experiences of people with disability from Iraqi and Syrian refugee backgrounds resettled in Australia, with a view to informing future services and supports. Interviews with nine family members of 11 people with disability from Iraqi and Syrian refugee backgrounds and seven practitioners working in refugee specific services. Persons with disability had a range of disabilities including intellectual or developmental, physical and sensory. Interviews were translated from Arabic to English as required and analysed using thematic analysis. Two themes described the practices and service interventions that addressed disparities: (1) Getting the basics right: Refugee specific services played a crucial role during early settlement in ensuring access to medical, health and social care including diagnosis, medication, equipment, housing and financial support. (2) Ongoing access to disability supports: Refugee specific services assisted families with longer-term supports once immediate needs were met, including accessing services through the National Disability Insurance Scheme. Participants described benefits such as having access to interpreters and Arabic-speaking staff, demonstrating services' attention to cultural sensitivity and safety, and problems including waiting times, bureaucratic processes and housing needs. Refugee specific services, disability services and health services should collaboratively develop and implement strategies to tackle the intersectional nature of issues resettled refugees with disability and their families encounter in Australia. These should be informed by the experiences of people with disability and family members from refugee backgrounds and privilege holistic practices that avoid reliance on one sector alone to address the complex needs of refugees with disability.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"33-44"},"PeriodicalIF":1.7,"publicationDate":"2022-04-09","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12424","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43558623","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":"Adapting parent-focused interventions for diverse caregivers of children with intellectual and developmental disabilities: Lessons learned during global crises","authors":"Sandra B. Vanegas,&nbsp;Ana D. Dueñas,&nbsp;Megan Kunze,&nbsp;Yue Xu","doi":"10.1111/jppi.12422","DOIUrl":"10.1111/jppi.12422","url":null,"abstract":"<p>Parent-focused interventions have been designed to provide training and support to caregivers who are essential in achieving positive outcomes for children with intellectual and developmental disabilities (IDD). In 2020, significant crises, including the COVID-19 pandemic and continued racial tensions, profoundly impacted the livelihood of children with IDD and their families. Many ongoing efforts to address disparities among this population were halted temporarily and required further adaptations. Researchers adapted interventions and support to address the disparities impacting children with IDD and their families with limited guidance. We provide a descriptive case analysis of four parent-focused interventions that responded to the global crises to continue serving children with IDD and their families. The four distinct programs were based on applied behavior analysis and naturalistic, developmental-behavioral paradigms that were culturally adapted for families of young children with IDD from diverse cultural and socioeconomic backgrounds. We present the qualitative reports on the challenges and benefits that arose with adapting the four parent-focused interventions for telehealth implementation. We focused specifically on adaptations made in recruitment and retention, instrumentation and measurement, research staff training, and intervention delivery. We synthesize our experience with challenges and solutions in adapting parent-focused interventions for racially/ethnically and socioeconomically diverse children with IDD and their families. We conclude with recommendations for researchers and practitioners on methods for adapting parent-focused interventions to address the significant health disparities that impact racially, ethnically, and socioeconomically diverse children with IDD and their families.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"20 1","pages":"45-57"},"PeriodicalIF":1.7,"publicationDate":"2022-04-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12422","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"48768367","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":"Connecting locally: An examination of the role of service providers in supporting the social inclusion of adults with intellectual disabilities in their neighbourhoods","authors":"Geraldine Boland,&nbsp;Suzanne Guerin","doi":"10.1111/jppi.12419","DOIUrl":"10.1111/jppi.12419","url":null,"abstract":"<p>Article 19 of the UN Convention on the Rights of People with Disabilities calls for all people with disabilities to live independently and be included in their community. Adults with intellectual disabilities may live in neighbourhoods, but often have limited experience of social connectedness. This study aimed to examine the role of service provider organisations in supporting social inclusion in neighbourhoods of adults with intellectual disabilities. The understanding of social inclusion locally for adults with intellectual disabilities was explored and whether organisational policies (if any) had been drawn up to guide the support actions of staff. A mixed methods design was employed, with CEOs/service leaders of 40 service provider organisations completing an online survey. Follow-up telephone interviews were completed with a randomised sample. Data were analysed using descriptive statistics and qualitative content analysis. Service leaders understood social inclusion to encompass purposeful engagement that moved beyond mere physical presence. Individuals having a sense of connection to place and belonging to people who live locally included fostering mutually supportive connections with neighbours. Equality of access to local services and supports were underscored. Active citizenship and service provider/staff supports for a socially included life were highlighted. Almost all service leaders rated the role of service providers at organisational/strategic level as important. However, their values and beliefs revealed contrasting views on the appropriate level of visibility of service providers when supporting individuals. Close to two-thirds of service providers did not have an organisational policy regarding social inclusion in neighbourhoods. Developing specific service policies on social inclusion in neighbourhoods, based on the UNCRPD, and reflecting relevant national disability policies is proposed. This may enhance strategic planning and service providers decision-making on targeted resource allocation. Further implications for policy, practice and research arising from this study are discussed.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 3","pages":"288-299"},"PeriodicalIF":1.7,"publicationDate":"2022-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12419","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43020228","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":"As far as possible: The relationship between public awareness, social distance, and stigma towards people with intellectual disability","authors":"Marcela Tenorio,&nbsp;Paulina Sofía Arango,&nbsp;Andrés Aparicio,&nbsp;Afia Ali,&nbsp;Angela Hassiotis","doi":"10.1111/jppi.12416","DOIUrl":"10.1111/jppi.12416","url":null,"abstract":"<p>Research shows that people with intellectual disability (ID) face public stigma. However, a recently published narrative review suggests that this phenomenon has not been explored in a Latin American country. This study fills the gap in our understanding of public stigma towards people with intellectual disability in Chile. 395 adults from the general population (18 to 78 years) participated in the survey. Using the Intellectual Disability Literacy Scale, adapted for Chile, we explored the participants' literacy about ID, their causal beliefs, and desire of social distance. Only 1.3% of the sample identified intellectual disability in the instrument's vignette. The most common causal attribution for the condition was environmental, followed by biomedical factors. Participants showed a high desire of social distance, with higher scores associated with more educated participants. Our findings show that low literacy about intellectual disability and a high desire for social distance are significant factors contributing to public stigma in Chile. These are tangible targets for change that can lead to increased social inclusion and participation of people with intellectual disability in Chile. Any such approaches are likely to be transferable to other Latin American countries and could help reduce public stigma for this population.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 4","pages":"419-430"},"PeriodicalIF":1.7,"publicationDate":"2022-03-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45681559","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":"Key learnings from COVID-19 to sustain quality of life for families of individuals with IDD","authors":"Rachael Wanjagua,&nbsp;Stevie-Jae Hepburn,&nbsp;Rhonda Faragher,&nbsp;Shaji Thomas John,&nbsp;K. Gayathri,&nbsp;Margaret Gitonga,&nbsp;Cecylia Francis Meshy,&nbsp;Lucena Miranda,&nbsp;Devis Sindano","doi":"10.1111/jppi.12415","DOIUrl":"10.1111/jppi.12415","url":null,"abstract":"<p>COVID-19 has very publicly had profound impacts on the health system of every country in the world. Over 4.5 million people have lost their lives. School closures worldwide where up to 1.6 billion of the world’s children have been out of school, are also prominent in world news. Behind these public impacts are the families. In this paper, we focus on the experiences of families with people with intellectual and developmental disabilities (IDD) through analysis of two data sets: the emerging research literature and contributions from our author team who have lived experience of intellectual and developmental disability in the context of COVID-19. From these two data sets, we discern five themes of the impact of the pandemic: on health, on education, on services and supports, on families and finally on relationships beyond the family. We conclude with lessons from those living with intellectual and developmental disabilities, the carers and the individuals themselves to draw implications for supporting families in the context of disability during future pandemics.</p>","PeriodicalId":47236,"journal":{"name":"Journal of Policy and Practice in Intellectual Disabilities","volume":"19 1","pages":"72-85"},"PeriodicalIF":1.7,"publicationDate":"2022-03-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jppi.12415","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"47643357","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}