Using a community engaged research approach to develop the social skills training program for adults with Williams syndrome.

This article describes the development of a distance-delivered social skills training program for adults with Williams syndrome (SSTP-WS) through a community engaged approach. Throughout six phases of development, the research team received input from adults with Williams syndrome, caregivers, service providers, educators, and researchers on (a) the need for a training program and topics to be addressed (Phase 1), (b) an initial draft of the SSTP-WS (Phase 3), (c) the intervention pilot study (Phase 5), and (d) feedback to provide context for the results of the study (Phase 6). The development of the SSTP-WS resulted in an intervention aligned with the Williams syndrome community's values and needs that supports the unique cognitive and behavioral phenotypes and social characteristics of this low incidence disability population.

"Life-altering": A qualitative analysis of social media birth stories from mothers of children with Down syndrome.

Perinatal depression/anxiety is a significant concern for mothers of children with Down syndrome. This is influenced by the way the Down syndrome diagnosis is shared with parents. This study examined social media posts from mothers regarding experiences of the birth of their child with Down syndrome. Forty-three total stories were coded using thematic content analysis. Results highlighted the experiences of mother's who received a diagnosis of Down syndrome for their newborn. Two themes were found with relevant subthemes (i.e., receiving the diagnosis-mother's intuition, confirmation of the diagnosis, influence of potential health concerns, initial emotions, impact of the medical professional; Processing the diagnosis-life-altering, child not meeting expectations, reframing the diagnosis, impact of partner and others). Findings highlight the need for medical personnel to understand this identity-changing process, as perinatal depression/anxiety looks different for these mothers. There is also a need to help them engage in services accordingly.

A Distance-Delivered Social Skills Program for Young Adults with Williams Syndrome: Evaluating Feasibility and Preliminary Efficacy.

Adults with Williams syndrome (WS) display hypersocial behaviors and experience social skills deficits. To improve social outcomes, we evaluated the feasibility, acceptability, and preliminary efficacy of an 8-week distance-delivered social skills program for adults with WS. Sessions were offered twice a week for 90 min. Twenty-four adults with WS were assigned to an intervention or waitlist control group. Outcomes were assessed through interviews and surveys with adults with WS, parents, and facilitators. The intervention was rated as acceptable and feasible by all. Parents rated adults with WS as displaying significant improvements in social skills; yet ratings by adults with WS did not change. Adults also displayed increased social skills knowledge following participation. Implications for practice and future research are discussed.

Psychosocial and vocational impacts of COVID-19 on people with and without disabilities.

PURPOSE/OBJECTIVE: The coronavirus disease 2019 (COVID-19) pandemic led to devastating economic impacts and psychosocial changes for individuals around the world, including people with chronic illness and disabilities (CID). This study explored the impacts on employment and how it related to stress and satisfaction with life during COVID-19 between people with and without CID. RESEARCH METHOD/DESIGN: A cross-sectional study design was used with 1,380 adults from 20 countries who were employed before the COVID-19 pandemic, including 318 people with CID. Statistical methods (i.e., descriptive statistics, chi-square analyses, two-way analysis of variances) were used to analyze the time, employment, group, and interaction effects. RESULTS: There were three main findings. (1) Compared with those without CID, individuals with CID were more likely to have their employment impacted by the COVID-19 pandemic and they were more often laid off or dismissed from their job. (2) Individuals with CID reported significantly higher stress and lower life satisfaction compared with those without CID during the COVID-19 pandemic regardless of its impacts on employment. (3) Individuals whose employment was impacted reported significantly lower life satisfaction during the COVID-19 pandemic regardless of their CID status. CONCLUSION/IMPLICATIONS: Findings highlight the employment and psychosocial impacts of a global pandemic and provide implications for moving forward in regards to vocational and psychosocial intervention services and supports that will be needed, especially for those with CID. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Current Status of Evidence-Based Practices to Enhance Employment Outcomes for Transition Age Youth and Adults on the Autism Spectrum.

PURPOSE OF REVIEW: This review provides a highlight of existing evidence-based practices and community support systems that exist to enhance employment outcomes for autistic transition-age youth (TAY) and adults. An update is provided on the current status of these programs and the impact they are having on employment outcomes for this population. RECENT FINDINGS: Many programs exist that prove to be efficacious in improving employment outcomes. These programs can be categorized as vocational rehabilitation service system level interventions, provider and consumer level interventions targeting skills related to employment, and consumer level interventions delivered within community vocational rehabilitation or education settings. A more recent increase in programs is consistent with multiple research and policy calls for amplified programming in this area. Despite these recent increases, there is still a need to further develop effective programming to support employment outcomes as the growing autistic population age into adulthood. Community-based research and practice should continue to be developed and tested.

Social support as a mediator of stress and life satisfaction for people with intellectual or developmental disabilities during the COVID-19 pandemic.

INTRODUCTION: This study examined factors that predict stress level and life satisfaction among adults with intellectual or developmental disabilities during the COVID-19 pandemic and the role of social support. METHOD: From a larger study about the experiences during the pandemic of 2028 individuals with and without disabilities, 181 adults with intellectual or developmental disabilities (or proxy) responded. RESULTS: Most respondents with intellectual or developmental disabilities (92.8%) reported negative impacts from the pandemic, with 55.2% of the 96 employed pre-pandemic reporting impacted employment, including job loss. The negative impact of the pandemic was a significant predictor of stress level; social support was related to reduced stress. Stress level and the negative impact of the pandemic were inversely related to life satisfaction; social support was positively related to life satisfaction. Social support partially mediated the association between stress level and life satisfaction. DISCUSSION: Comprehensive services and social support systems are needed to combat the impact of the pandemic.

Restrictions, Power, Companionship, and Intimacy: A Metasynthesis of People With Intellectual Disability Speaking About Sex and Relationships.

Examining literature that tells us what people with intellectual disability (PWID) think and feel about their sexual lives may enable families and professionals to offer a more person-centered approach to education and support. Examining the voices of many individuals across several studies may provide more convincing evidence about the experiences of these individuals-turning a solo into a chorus. Thus, the purpose of this article is to describe the results of a metasynthesis of qualitative studies highlighting the voices of PWID with respect to relationships and sexuality. Combining the results of 16 qualitative studies, 271 participants with intellectual disability were interviewed individually or in focus groups about their feelings and experiences regarding intimate relationships. Studies were conducted across Europe, in Australia, China, and in the United States. A little more than half of the participants were male; ages ranged from 13 to 89. Results revealed two competing themes of control and desire. Participants across studies desired friendships and close interpersonal relationships, yet were restricted from developing these relationships by policies, program staff, and family members.