Exploring the experiences of siblings of adults with intellectual/developmental disabilities during the COVID-19 pandemic.

BACKGROUND: The COVID-19 pandemic has caused many adults with intellectual/developmental disabilities (IDD) to lose their daily routines and social support, and as a result, many adults with IDD are increasingly reliant on their family caregivers. Siblings often play a crucial support role for their brothers and sisters with IDD. As such, this study aimed to describe the experiences of adult siblings of people with IDD during the COVID-19 pandemic. METHODS: The Sibling Collaborative worked with researchers to codesign an online survey, completed by 91 people, exploring sibling supports and concerns during the COVID-19 pandemic. The survey also aimed to identify helpful resources for siblings during this time. RESULTS: The results showed that the majority of siblings are supporting their brother or sister with IDD during the COVID-19 pandemic and are concerned about the health and well-being of their brother/sister. The most common concern related to disruption of their brother's or sister's routine and activities. Although responses of older and younger siblings did not differ from each other, siblings whose brother or sister with IDD lived with family had some unique concerns relative to those whose siblings no longer lived with family. Siblings described how their own self-care and relationships with others, as well as support for their brother/sister, were particularly helpful during the COVID-19 pandemic. CONCLUSIONS: Siblings are providing key support to their brother or sister with IDD during the COVID-19 pandemic, and they too must be supported. Siblings should be included in efforts to disseminate resources targeting people with IDD and their feedback and input must be obtained. It is also important to include sibling mental wellness as caregiver supports are created and implemented. More research is needed to further understand how to support sibling caregivers.

Community participation of youth with intellectual disability and autism spectrum disorder.

BACKGROUND: Community participation is associated with a range of positive developmental outcomes; however, the frequency, depth and resources associated with participation for youth with intellectual disability (ID) and autism spectrum disorder (ASD) are not well understood. METHOD: Caregivers of 212 youth with ASD and ID and only ID, aged 11-22 years, completed an online survey. Comparisons were made of caregiver reports of diversity and frequency of participation, levels of participation involvement and related environmental barriers and supports. RESULTS: The diversity and frequency of community participation of youth with ASD and ID approximated that of youth with ID only. Youth with ASD and ID were reported to be significantly less involved in the community activities in which they participated. Environmental features, and in particular, the social demands of community-based activities, were significant barriers to youths' participation. CONCLUSIONS: The current study highlights individual and environmental factors amenable to intervention that may foster successful community participation among youth with ASD and ID.

A systematic literature review of the physical and psychosocial correlates of Special Olympics participation among individuals with intellectual disability.

BACKGROUND: Special Olympics (SO) is commonly cited to play an important role in the lives of individuals with intellectual disabilities (ID). The purpose of the current review was to (a) synthesise key findings regarding the physical, psychological/emotional, social and/or intellectual/cognitive correlates of SO participation for individuals with ID and (b) highlight limitations in the extant research as well as directions for future research. METHOD: A systematic review of electronic databases was undertaken. A total of 46 articles were confirmed to meet study criteria. Quality assessments of included studies were conducted using checklists from the Scottish Intercollegiate Guidelines Network methodology checklists (SIGN 50; SIGN 2008). RESULTS: There was a larger amount of support for physical, psychological/emotional and social outcomes as compared with cognitive/intellectual outcomes; however, many studies were confounded by measurement difficulties, sampling procedures and a lack of replicable methods, which hinder generalisation of results. CONCLUSIONS: This review highlights the need for a continued critical focus on SO programme evaluation research with more rigorous and replicable methods.

Individual, social and contextual factors associated with psychiatric care outcomes among patients with intellectual disabilities in the emergency department.

BACKGROUND: Individuals with intellectual disabilities (ID) are disproportionately high users of psychiatric emergency services. Despite the demand for psychiatric assessments in the emergency department (ED), no clear guidelines have been established as to what factors should guide clinical decision-making processes. The current study aimed to explore individual, social and contextual factors related to psychiatric care outcomes among patients with ID in the emergency department. METHOD: Emergency department charts were reviewed for 66 individuals with ID who visited the emergency department during a psychiatric crisis. RESULTS: Standardised crisis severity scores were significantly higher in patients seen by psychiatrists as compared with patients who did not receive psychiatric consultations in the emergency department. A significantly greater proportion of patients with moderate or severe levels of ID (vs. borderline/mild) received psychiatric consultations. Emergency department visits resulting in inpatient hospital admission did not differ from those that did not, with the exception of the level of ID: patients admitted to psychiatric inpatient care were more likely to have moderate or severe levels of ID. CONCLUSIONS: The psychiatric care experiences of patients with ID in the emergency department appear highly variable. Further research focused on emergency department clinical decision-making practices concerning this population is warranted.