Caregivers and families of autistic people have experienced stress and increase in demands due to the COVID-19 pandemic that may have long-term negative consequences for both their own and their children's mental health. A scoping review was conducted to identify pandemic related demands experienced by caregivers and families of autistic children and youth. The review also consolidated information on coping strategies and parenting-related guidelines that have emerged to help parents meet these demands. Search strategies were approved by a research librarian and were conducted in peer-reviewed and gray literature databases between May 2020 and February 2021. Additional resources were solicited through author networks and social media. All articles were published between December 2019 and February 2021. Article summaries were charted, and a thematic analysis was conducted with confirmation of findings with our knowledge users. Twenty-three published articles and 14 pieces of gray literature were included in the review. The majority of articles characterized and highlighted the increase in demands on caregivers of autistic children and youth during the pandemic globally. Both quantitative and qualitative studies suggest that parents have experienced an increase in stress and mental health-related symptoms during lockdown measures. Findings suggest that families are employing coping strategies, but there no evidence-based supports were identified. The review highlighted the potential long-term impact of prolonged exposure to increasing demands on the mental health and wellbeing of caregivers and families of autistic people, and pointed to a need for the rapid development and evaluation of flexible and timely support programs. Lay SummaryCaregivers and families of autistic children and youth have faced increased demands due to pandemic-related lockdown measures. We reviewed the literature to outline sources of stress, links to their influence on caregiver mental health, and if support programs have emerged to help them. Our findings suggest a number of demands have increased caregivers' risk to mental health challenges, and their [Correction added on 30 October 2021, after first online publication: The copyright line was updated.]
Transitioning into adulthood is fraught with challenges for autistic youth. A greater understanding of the facilitators of community involvement in school and employment during this period is warranted. The current study examines changes in service need and receipt, and the stability of accessing daily structured activities, for autistic young adults over their transition period compared to adolescents and adults that did not enter the transition period. Baseline caregiver survey data were taken from the Canadian Autism Spectrum Disorders Alliance National Autism Needs Assessment Survey in 2014, and caregivers (n = 304) completed the same set of questions in 2017 about sociodemographic factors, clinical need, service receipt and typical weekday activities. Three cohorts were compared: (1) pretransition age youth, (2) transition‐age youth, and (3) young adults who were past transition age. Results suggest that transition‐age youth were found to have a unique set of priority service needs compared to pre transition‐age adolescent and to adult groups, and both transition‐age and adult groups had lower levels of priority service receipt compared to pretransition‐age adolescents. The transition‐age group experienced the greatest loss of structured weekday activity between time points, and were more likely than pretransition‐age adolescents to not have structured weekday activities at Time 2. A recovery of structured daily activity was not observed in young adults. Our results highlight the tumultuous nature of the transition period for autistic youth, which continues into adulthood, and the urgent need for supports during this time. Lay Summary This research highlights that autistic young people who are transitioning to adulthood are at greatest risk of losing structured weekday activities, and that once in adulthood, many continue to struggle to obtain meaningful community engagement. These results can help guide the design of adolescent and young adult transition programs.
Background: Falls risk assessment tools are used in hospital inpatient settings to identify patients at increased risk of falls to guide and target interventions for fall prevention. In 2022, Western Health, Melbourne, Australia, introduced a new falls risk assessment tool, the Western Health St. Thomas’ Risk Assessment Tool (WH-STRATIFY), which adapted The Northern Hospital’s risk tool (TNH-STRATIFY) by adding non-English speaking background and falls-risk medication domains to reflect patient demographics. WH-STRATIFY replaced Peninsula Health Risk Screening Tool (PH-FRAT) previously in use at Western Health. This study compared the predictive accuracy of the three falls risk assessment tools in an older inpatient high-risk population. Aims: To determine the predictive accuracy of three falls risk assessment tools (PH-FRAT, TNH-STRATIFY, and WH-STRATIFY) on admission to Geriatric Evaluation Management (GEM) units (subacute inpatient wards where the most frail and older patients rehabilitate under a multi-disciplinary team). Method: A retrospective observational study was conducted on four GEM units. Data was collected on 54 consecutive patients who fell during admission and 62 randomly sampled patients who did not fall between December 2020 and June 2021. Participants were scored against three falls risk assessment tools. The event rate Youden (Youden IndexER) indices were calculated and compared using default and optimal cut points to determine which tool was most accurate for predicting falls. Results: Overall, all tools had low predictive accuracy for falls. Using default cut points to compare falls assessment tools, TNH-STRATIFY had the highest predictive accuracy (Youden IndexER = 0.20, 95% confidence interval CI = 0.07, 0.34). The PH-FRAT (Youden IndexER = 0.01 and 95% CI = −0.04, 0.05) and WH-STRATIFY (Youden IndexER = 0.00 and 95% CI = −0.04, 0.03) were statistically equivalent and not predictive of falls compared to TNH-STRATIFY. When calculated optimal cut points were applied, predictive accuracy improved for PH-FRAT (Cut point 17, Youden IndexER = 0.14 and 95% CI = 0.01, 0.29) and WH-STRATIFY (Cut point 7, Youden IndexER = 0.18 and 95% CI = 0.00, 0.35). Conclusions: TNH-STRATIFY had the highest predictive accuracy for falls. The predictive accuracy of WH-STRATIFY improved and was significant when the calculated optimal cut point was applied. The optimal cut points of falls risk assessment tools should be determined and validated in different clinical settings to optimise local predictive accuracy, enabling targeted fall risk mitigation strategies and resource allocation.
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