Perceptions of Families of Individuals with Autism Spectrum Disorder during the COVID-19 Crisis.
ABSTRACT: Caring for an individual with autism spectrum disorder (ASD) in ideal circumstances can be stressful, and the Coronavirus disease (COVID-19) pandemic created a high degree of disruption to life and stress to families living with an individual with ASD. We conducted an online survey of families in Michigan that revealed higher levels of stress in caregivers of younger individuals with ASD and those with greater severity of ASD symptoms. Stress around therapeutic service disruption, finances, and illness predominated and greater stress was reported for caregivers of individuals receiving greater intensity of services pre-COVID-19. Respondents voiced concerns about receiving respite care during COVID-19, and those expressing interest in respite also reported greater symptom severity in the person with ASD.
Project description:This article offers an examination of aging processes of lifelong caregivers and the possibilities for social exclusion place experienced by parents of adult children with autism spectrum disorder (ASD). This study of parental caregivers ( n = 51) sheds light on how enduring caregiving roles can lead to social exclusion in three ways: misunderstanding of ASD and stigma, the complexity of the caregiving roles, and impact on daily routines including challenges with long-term planning for both the adult children and the parental caregivers. Implications for practice to address social exclusion include education and building greater communication ties among family member for family members and advocacy for more and higher quality services including respite care. This article concludes with discussion of the impact of this aging, yet caregiving population and the need for knowledge about aging processes and anticipating aging for these caregivers.
Project description:Frequent hospitalization and permanent nursing home placement not only affect the well-being of persons with dementia, but also place great financial strain on society. Therefore, it is important to create effective strategies to support informal caregivers so that they can continue to perform their demanding role. Preliminary qualitative evidence suggests that community-based respite services can actually be important for caregivers, and that the level of evidence should be further established in terms of effectiveness. Therefore, a comparative study to assess the effectiveness and cost-effectiveness of an in-home respite care program will be initiated.This manuscript described a quasi-experimental study to assess (cost)-effectiveness of an in-home respite care program to support informal caregivers of persons with dementia.124 informal caregivers and persons with dementia will be included in the intervention group and will receive an in-home respite care program by an organization called Baluchon Alzheimer. 248 dyads will be included in the control group and will receive standard dementia care. The primary outcome is caregiver burden. Secondary outcomes are: quality of life of caregivers, frequency of behavioral problems of persons with dementia and the reactions of caregivers to those problems, intention to institutionalize the care-recipient, time to nursing home placement, resource use of the care-recipient, and willingness to pay for in-home respite care. When the trial demonstrates a difference in outcomes between both groups, within-trial and modeled cost-effectiveness analyses will be conducted in a separate economic evaluation plan to evaluate possible cost-effectiveness of the in-home respite care program compared to the control group receiving standard dementia care. Finally, the model based cost-effectiveness analyses will allow to extrapolate effects over a longer time horizon than the duration of the trial.This study will have great added value because to date no studies measured effectiveness and cost-effectiveness of an in-home respite care program of the Baluchon type. Results of this trial can thus give much more insight in potential benefits and disadvantages of community-based respite care. Conclusions based on this trial can help policy-makers in elaborating future directions of dementia care.Clinicaltrials.gov Identifier NCT02630446 .
Project description:Introduction:End-of-life (EOL) care delivery to Latinos is a well-documented challenge. The majority of caregivers for Latino patients are family relatives, but because Latino caregivers may spend more hours in the caregiving role than other ethnic groups and are less likely to use additional available health care, caregivers can experience an increased burden. This can result in Latino elders being more vulnerable to receiving aggressive care. "Caregivers Like Me" was created as a source for nonprofessional caregivers to improve their knowledge about Latino caregiving of elders at end-of-life (EOL). This resource aims to educate about caregiver stress and to improve attitudes towards the utilization of EOL services. Methods:"Caregivers Like Me" is a bilingual education intervention that includes a video soap opera, or telenovela. The video is followed by discussion of hospice, palliative care, and caregiver stress definitions and ends with an explanation of services available for caregivers (i.e., social services, support groups, adult day care, chore workers, home care with or without palliative care, and respite care under hospice). Results:"Caregivers Like Me" has been demonstrated to improve Latino family caregivers' openness to receiving professional help while caring for their loved ones. Participants in a multisite cross-sectional pilot study among nonprofessional Latino caregivers (N = 145) reported active learning from the intervention and high satisfaction with the overall educational experience. Discussion:This tool provides an education format that is culturally and literacy-sensitive to Latino caregivers and effective in changing their attitude toward EOL care. It may be used by professional caregivers to educate Latino caregivers about EOL care.
Project description:OBJECTIVE:Assess family caregivers' primary appraisal of stressors related to COVID-19 stay-at-home orders, secondary appraisal of resources and support availability, and use of coping strategies as predictors of perceived role overload during the stay-at-home phase of the pandemic. METHOD:Telephone interviews with 53 family caregivers of persons with dementia from rural Virginia two weeks after enactment of the governor's stay-at-home order using structured and open-ended questions. RESULTS:Caregivers who were more concerned about the COVID-19 pandemic were at greater odds of experiencing high role overload than those who recognized positive aspects of the pandemic, as were those who received insufficient support from family and friends. DISCUSSION:Use of the transactional model of stress responses yielded important insights about families coping with dementia. Caregivers' perceptions of the pandemic's impact varied, with differential effects on their well-being.
Project description:The social interactions between caregivers and their children play a crucial role in childhood development; therefore, caregivers' feelings for children are critical for the development of social minds. Mothers of children with autism spectrum disorder (ASD) are known to experience higher levels of stress. However, knowledge regarding mothers' feelings for their children before receiving a clinical diagnosis is limited. This study retrospectively investigated the time course of mothers' feelings from the time of birth and the effect of protective factors. The participants were 5- to 8-year-old children with an ASD diagnosis and their mothers. The mothers of the children with ASD had less positive feelings toward their children than the mothers of the typically developed (TD) children before receiving a clinical diagnosis. Intriguingly, prior knowledge of ASD may relieve maternal mental distress during the child-rearing years and at the time of diagnosis.
Project description:<h4>Background</h4>Due to the increase in the number of people with dementia, relatives often provide in-home care. This care constitutes a cornerstone of the healthcare system, and maintaining these caregivers' well-being is therefore of paramount importance. Although respite interventions are generally considered an effective support system, they tend to be underutilized. The aim of this integrative literature review is to highlight the factors that promote and impede the use of respite interventions.<h4>Methods</h4>Searches were conducted on the PubMed and CINAHL databases for studies of respite interventions from 1980 to 2016, and they yielded 51 articles of relevance.<h4>Results</h4>Analysis of these articles revealed modifiable and immutable factors that influence the use of respite. The most cited topic categories in the literature were attributes of respite services and workload managed by caregivers, which is characterized by the onset of burden.<h4>Conclusion</h4>The factors promoting or impeding the use of respite interventions identified by our analysis highlight the need to adapt respite service attributes and use caregivers' skills to foster the partnership between healthcare teams and caregivers and to ensure the accompanying dyad's quality and safety.
Project description:Autism spectrum disorder (ASD), characterized by both impaired communication and social interaction, and by stereotypic behavior, affects about 1 in 68, predominantly males. The medico-economic burdens of ASD are enormous, and no recognized treatment targets the core features of ASD. In a placebo-controlled, double-blind, randomized trial, young men (aged 13-27) with moderate to severe ASD received the phytochemical sulforaphane (n = 29)--derived from broccoli sprout extracts--or indistinguishable placebo (n = 15). The effects on behavior of daily oral doses of sulforaphane (50-150 µmol) for 18 wk, followed by 4 wk without treatment, were quantified by three widely accepted behavioral measures completed by parents/caregivers and physicians: the Aberrant Behavior Checklist (ABC), Social Responsiveness Scale (SRS), and Clinical Global Impression Improvement Scale (CGI-I). Initial scores for ABC and SRS were closely matched for participants assigned to placebo and sulforaphane. After 18 wk, participants receiving placebo experienced minimal change (<3.3%), whereas those receiving sulforaphane showed substantial declines (improvement of behavior): 34% for ABC (P < 0.001, comparing treatments) and 17% for SRS scores (P = 0.017). On CGI-I, a significantly greater number of participants receiving sulforaphane had improvement in social interaction, abnormal behavior, and verbal communication (P = 0.015-0.007). Upon discontinuation of sulforaphane, total scores on all scales rose toward pretreatment levels. Dietary sulforaphane, of recognized low toxicity, was selected for its capacity to reverse abnormalities that have been associated with ASD, including oxidative stress and lower antioxidant capacity, depressed glutathione synthesis, reduced mitochondrial function and oxidative phosphorylation, increased lipid peroxidation, and neuroinflammmation.
Project description:<h4>Purpose of study</h4>To assess trends in family caregiving between 1999 and 2015.<h4>Design and methods</h4>We construct nationally representative profiles of community-dwelling older adults receiving help with self-care or indoor mobility and their "primary" family or unpaid caregiver using the 1999 and 2004 National Long Term Care Survey, 2011 and 2015 National Health and Aging Trends Study, and linked caregiver surveys. Trends are examined.<h4>Results</h4>Older adults receiving help were incrementally younger, more racially diverse, and better educated in 2015. Primary caregivers overwhelmingly continued to be spouses and adult children. Arrangements were increasingly 4 years or longer in duration (shifting from 44.8% in 1999 to 60.5% by 2015). On average, primary caregivers provided about or in excess of 30 hr per week at all four time points. Spouses provided fewer hours of care, were twice as likely to work, and half as likely to report substantial emotional, physical, and financial difficulty due to caregiving in 2015 than 1999. Adult children provided comparable hours of care to a more impaired population; a similar proportion reported substantial caregiving-related difficulty at each time. Use of respite care nearly doubled from 8.5% in 1999 to 15.7% in 2015. Dementia caregivers were less likely to report substantial physical and financial difficulty and more likely to use respite care in 2015 than 1999.<h4>Implications</h4>Family caregivers' circumstances generally improved during the 16-year period. Results diverge from prevailing concerns regarding the state of family caregiving and demonstrate the importance of longitudinally monitoring trends in late-life family caregiving.
Project description:The COVID-19 pandemic has impacted research around the globe and required shuttering of research programs and the implementation of procedural adjustments to ensure safety. This study sought to document COVID-19's impact on eating disorders (ED) research, which may be particularly susceptible to such disruptions, given its focus on individuals who are physically and emotionally vulnerable. We invited ED researchers from editorial boards and scientific organizations to complete a quantitative/qualitative survey about: COVID-19's current and future impact on ED research; areas of concern about research disruptions; and effective strategies for conducting and supporting research during and after COVID-19. Among 187 participants, many had moved studies online and/or shutdown part of their research. Across position types (permanent, 52.7%; temporary, 47.3%), participants reported high concern about data collection, recruitment, and securing future funding. Those holding temporary positions reported significantly greater concern about COVID-19's impact on their career and greater stress than participants in permanent positions. Strategies for dealing with research disruptions included: employing technology; reprioritizing goals/tasks; and encouraging collaboration. Results underscore the high levels of stress and disruption caused by COVID-19. We echo calls by our respondents for support for early career scholars and advocacy for additional resources for research and scientists.
Project description:Abstract Background Since the COVID-19 pandemic began, thousands of medical procedures and appointments have been canceled or delayed. The long-term effects of these drastic measures on brain tumor patients and caregivers are unknown. The purpose of this study is to better understand how COVID-19 has affected this vulnerable population on a global scale. Methods An online 79-question survey was developed by the International Brain Tumour Alliance, in conjunction with the SNO COVID-19 Task Force. The survey was sent to more than 120 brain tumor charities and not-for-profits worldwide and disseminated to pediatric and adult brain tumor patients and caregivers. Responses were collected from April to May 2020 and subdivided by patient versus caregiver and by geographical region. Results In total, 1989 participants completed the survey from 33 countries, including 1459 patients and 530 caregivers. There were no significant differences in COVID-19 testing rates (P = .662) or positive cases for brain tumor patients between regions (P = .1068). Caregivers were significantly more anxious than patients (P ? .0001). Patients from the Americas were most likely to have lost their jobs due to the pandemic, practiced self-isolation, and received telehealth services (P ? .0001). Patients from Europe experienced the most treatment delays (P = .0031). Healthcare providers, brain tumor charities, and not-for-profits were ranked as the most trusted sources of information. Conclusions As a result of COVID-19, brain tumor patients and caregivers have experienced significant stress and anxiety. We must continue to provide accessible high-quality care, information, and support in the age of COVID-19.