Journal of Intellectual Disabilities最新文献

This study reports on a five-year data set about the deaths of 599 individuals in New South Wales Australia, who at the time of their death were living in out-of-home care. Analysis aimed to: i) gain a clearer understanding of place of death for people with intellectual disability; and ii) identify and analyse associated variables to investigate how well they predict place of death for this population. Hospital admissions, polypharmacy and living situation were the strongest standalone predictors of place of death. A hospital death was more likely if the target population were subject to polypharmacy, lived in a group home, had a moderate intellectual disability or had GORD. Death, and place of death, is an issue requiring individual consideration. This study has identified some of the variables that need attention when supporting people with intellectual disability to have a good death.

The COVID-19 pandemic and its demands of social distancing have created challenges in the lives of children/adolescents with developmental disabilities and their families, which would change aspects of children's functioning. The objetive of this study was to evaluate changes in some components of functioning of children/adolescents with disabilities following 4 months of social distancing during a period of high contamination rate in the year 2020 in Brazil. Participated 81 mothers of children/adolescents with disabilities, 3-17 years, most of them (80%) diagnosed with Down syndrome, cerebral palsy and autism spectrum disorder. Remote assessments of functioning' aspects including IPAQ, YC-PEM/ PEM-C, Social Support Scale and PedsQL V.4.0. Wilcoxon tests compared the measures, with significance level <0.05. No significant changes in participant's functioning were identified. Social adjustments required to facing the pandemic during two points in time in the midst of the pandemic did not change the evaluated aspects of functioning in our sample of Brazilian.

Transition outcomes for Black youth with intellectual and developmental disabilities are especially dire, lagging even further behind already poor outcomes among their White peers. Self-determination is a key factor in predicting better outcomes, but it is unclear how self-determination is fostered or hindered within the transition process for Black youth and their families. This study used the DisCrit framework to analyze interview data from Black students with intellectual and developmental disabilities and their parents regarding self-determination and effective transition services. Analysis resulted in four major themes: historical undertones, proxies for racial bias, spacialization of racialization, and interest convergence. Implications for future research, policy, and practice are discussed.

Background: Fetal Alcohol Spectrum Disorder (FASD) is a common neurodevelopmental disorder but may be underrecognized and misunderstood by people who provide health and social support services. The aim of the research is to understand the FASD knowledge, attitudes, and practices among people employed by the social and community sector in New Zealand. Methods: We conducted an online survey of people working in the New Zealand social and community sector (i.e., social workers, support workers). The survey focused on the following areas: awareness of FASD; knowledge and beliefs about FASD; the impact of FASD on professional practice; and training needs. Results: Most participants reported a basic understanding of FASD, however only 5% felt very well prepared to support someone with FASD. A large majority of participants believed that FASD diagnosis may be stigmatising for individuals or families. Conclusion: There is a need to improve training, professional development, and workplace support for social and community workers in New Zealand to support people with FASD.

In people with intellectual disabilities research and policy are often still focused on risks or the prevention of risks. Research on the process of resilience is in its infancy in the care for people with intellectual disabilities. In the current study, applying a guided photovoice procedure, people with intellectual disabilities were asked what helped them to deal with adverse events. Additionally, informants from their social network were asked to reflect on this question. The following sources of resilience were identified: acceptance, autonomy, beautiful memories, perseverance, physical wellbeing, positive emotions, social skills, spirituality, activities, a home and the social network. Our findings provide practical guidelines for clinicians to talk about resilience with people with intellectual disabilities. Suggestions for future research are made that will contribute to the process of resilience and inclusion of people with intellectual disabilities.

This study aimed at analyzing the differences in challenging behaviors between adults with intellectual disability and ASD and those who only had intellectual disability, as well as to explore associations between transdiagnostic and clinical variables to these differences. Therapists and educators of 163 adults with intellectual disability (83 with additional ASD diagnosis) completed the test battery. Mean difference analysis and univariate analyses of covariance were performed to determine the impact of clinical variables and transdiagnostic variables on the frequency and severity of challenging behaviors. Results showed that adults with ASD and intellectual disability presented higher frequency and severity of these behaviors. A significant effect of the diagnosis of ASD on the frequency and severity of self-injuries and stereotypies was found. Also, some transdiagnostic variables influencing the presence of these behaviors were highlighted. These factors should be considered when planning and designing interventions for behavioral problems in this population.

In Ireland, the provision of behavior support services has developed following the introduction of Health Information and Quality Authority (2013) standards and the regulation of Positive Behavior Support (PBS) under the Health Act (2007). The purpose of this study was to explore what factors facilitate and act as barriers to implementation of behavioral recommendations in Intellectual Disability organizations from the practitioner's perspective. Twelve interviews were carried out, audio recorded, transcribed and analysed using Braun and Clarke's (2006) Thematic Analysis. One superordinate theme (administrator support), four themes (values, resources, relationships and implementation of consequences) and five sub-themes (staff turnover and burnout, training and knowledge, time and physical contact, relationships between practitioners and staff and staff and service users) were identified, all interconnected in the implementation process. A common thread reflected throughout the themes, was the practitioner's acknowledgment of barriers overpowering facilitation which resulted in a less than optimum implementation of PBS.

Learning Disability Liaison Nurses have been shown to improve hospital experiences and this is an emerging role in Ireland. This research qualitatively explored the impact of a Clinical Nurse Specialist Acute Hospital Liaison from the perspective of staff in an intellectual disability community organisation. Participants identified significant challenges with supporting people attending hospitals including accessing and understanding information, anxieties and not being prepared for transitions through the hospital. The findings demonstrate the introduction of this role is a supportive, positive step with reports of improved information sharing, feeling better prepared and alleviating anxieties related to supporting someone in hospital. The findings clearly identify that this role has considerable benefits when set in a community organisation. This role has had a positive impact on service users and staff when interacting with hospitals, providing evidence of the value of this role in Ireland and also of they having a specialist qualification in the role.

The employability of the intellectually challenged has received little attention in the past. In order to fill this research gap, the present study was undertaken. The study is centered on the experiences of six intellectually challenged individuals who received employability training at a non-governmental organization. A focus group discussion along with a case study was conducted. The researchers employed the Rigorous and Accelerated Data Reduction (RADaR) technique to analyze the data from the focus group discussion. Results from both the focus group discussion and the case study revealed that the training program has had a significant impact on the lives of the participants and has aided them in becoming economically empowered and independent.

22q11.2 deletion syndrome is a rare multisystem genetic disorder with over 200 associated characteristics, occurring in various combinations and severity. Extensive biomedical research has been undertaken on 22q11.2 deletion syndrome, however, there is a dearth of research on families' experiences of managing a family member with this condition. The complex and at times serious phenotypical presentation of the syndrome can make the management of the condition difficult for families. The aim of this mixed method explanatory sequential study was to investigate family hardiness as a resilience factor for adaptation in families of children with 22q11.2 deletion syndrome from parents' perspectives. We found that adaptation scores increased by 0.57 points (95% CI: 0.19-0.94) for every one-point increase in family hardiness score. Qualitative results indicated that acceptance of the child's diagnosis and support positively influenced hardiness whereas fears about the future and their experiences of loss negatively influenced hardiness.