Exploring the Influence of the Coronavirus Disease 2019 Pandemic on the Accessibility of Rehabilitation Services Provided to Children with Disabilities: A Cross-Sectional Study.

Background and Objectives: Children with disabilities (such as cerebral palsy, autistic spectrum disorder, and Down syndrome) are the most vulnerable and marginalized subset of the population, representing 2.7% of the total population of Saudi Arabia. The COVID-19 outbreak might have disproportionately affected children with disabilities, augmented their isolation, and induced severe disruptions to the services on which these children rely. Limited research has been conducted in Saudi Arabia to understand the impact of the COVID-19 pandemic on the rehabilitation services provided to children with disabilities and barriers. This study aimed to investigate the effect of the lockdown implemented as a result of the coronavirus disease-2019 (COVID-19) pandemic on the accessibility of rehabilitation services, including communication, occupational therapy, and physical therapy, in Riyadh, Kingdom of Saudi Arabia. Materials and Methods: In this cross-sectional study, a survey was conducted between June and September 2020 during the lockdown in Saudi Arabia. A total of 316 caregivers of children with disabilities from Riyadh participated in the study. The accessibility of rehabilitation services provided to children with disabilities was assessed by designing a valid questionnaire. Results: A total of 280 children with disabilities received rehabilitation services before the COVID-19 pandemic and showed improvement following therapeutic sessions. However, during the pandemic, most children stopped receiving therapeutic sessions because of lockdown, which deteriorated their condition. This shows a significant reduction in the accessibility of the rehabilitation services provided during the pandemic. Conclusions: The findings of this study revealed a drastic decline in services provided to children with disabilities. This caused a notable deterioration in the abilities of these children.

Lack of freedom predicted poor self-reported health among family caregivers of children with disabilities during the COVID-19 pandemic in Europe.

AIM: We aim to assess the effects of the COVID-19 pandemic on self-reported health and quality of life among family caregivers of children with disabilities across Europe. DESIGN: Cross-sectional study. METHODS: Data from the survey by the Eurocarers and IRCCS-INRCA were used. The data were collected between November 2020 and March 2021 from 16 European countries. Data analysis was done using regression analysis to identify family caregivers' self-reported health and well-being predictors. RESULTS: This study included 289 caregivers. The mean age of children was 12 years. Their family caregiver's mean age was 44, and they were mainly women. Experience of lack of freedom predicted family caregivers' poor self-reported health and quality of life. Children's interrupted health and social services also predicted family caregivers' poor self-reported mental well-being. Longitudinal evidence on the pandemic's effects and a diverse view of family caregivers of children with disabilities are needed to plan effective post-pandemic health services and nursing practice. No Patient or Public Contribution.

"Kind of empowered": Perceptions of socio-emotional development in children driving ride-on cars.

PURPOSE/OBJECTIVE: Early powered mobility (PM) experiences can be essential facilitators of self-initiated mobility, socialization, and exploration for young children with disabilities. Cerebral palsy (CP) and developmental delay are two of the most common diagnoses associated with motor disability in young children with 1 in 345 children diagnosed with CP and 1 in 6 with developmental delay in the US. The purpose of this study was to explore the longitudinal experiences and caregiver perceptions of socio-emotional development in particular, in young children with disabilities during modified ride-on car (ROC) use. RESEARCH METHOD/DESIGN: A qualitative, grounded theory approach was used. Semi-structured interviews were conducted with 15 families (children ages 1-4 with CP or developmental delay) at baseline, 6 months (as able due to COVID), and 1 year following ROC introduction. Data were coded independently by three researchers using constant comparison until data saturation occurred and themes emerged. RESULTS: Four themes emerged from the data: "Leveling the Playing Field," "Breaking Down Barriers," "Fun and Work: ROC as Toy and Therapy Device," and "Mobility is a Pathway to Autonomy." Conclusions/Implication: Children and caregivers viewed ROCs as both fun and therapeutic, consistently identifying perceived benefits for children's socio-emotional development. This qualitative study provides a better understanding of the complexities and impact of ROCs on children and their families in the socio-emotional domain and may help facilitate clinical decision-making when introducing PM to young children with disabilities as part of a multimodal approach to early intervention. (PsycInfo Database Record (c) 2023 APA, all rights reserved).

Application of the child community health inclusion index for measuring health inclusion of children with disabilities in the community: a feasibility study.

BACKGROUND: Participation in the community is a fundamental human right for children with disabilities and is a key component of their health and development. Inclusive communities can enable children with disabilities to participate fully and effectively. The Child Community Health Inclusion Index (CHILD-CHII) is a comprehensive assessment tool developed to examine the extent to which community environments foster healthy, active living for children with disabilities. OBJECTIVES: To assess the feasibility of applying the CHILD-CHII measurement tool across different community settings. METHODS: Participants recruited through maximal representation, and purposeful sampling from four community sectors (Health, Education, Public Spaces, Community Organizations) applied the tool on their affiliated community facility. Feasibility was examined by assessing length, difficulty, clarity, and value for measuring inclusion; each rated on a 5-point Likert scale. Participants provided comments for each indicator through the questionnaire and a follow-up interview. RESULTS: Of the 12 participants, 92% indicated that the tool was 'long' or 'much too long'; 66% indicated that the tool was clear; 58% indicated that the tool was 'valuable' or 'very valuable'. No clear consensus was obtained for the level of difficulty. Participants provided comments for each indicator. CONCLUSION: Although the length of the tool was regarded as long, it was seen to be comprehensive and valuable for stakeholders in addressing the inclusion of children with disabilities in the community. The perceived value and the evaluators' knowledge, familiarity, and access to information can facilitate use of the CHILD-CHII. Further refinement and psychometric testing will be conducted.

Household Dietary Diversity among Households with and without Children with Disabilities in Three Low-Income Communities in Lusaka, Zambia.

The purpose of this manuscript is to describe household dietary diversity (HDDS) in Lusaka, Zambia between households with and without a child with a disability living in the same communities. Cross-sectional data were collected in three low-income compounds in September 2021. Participants included households with a child with a disability enrolled in Kusamala+, a community-based program, (n = 444) and a convenience sample of adults living in the same area without a child with a disability (n = 1027). The HDDS tool asked about food groups consumed in the past 24 h by people in the household. The responses were summed (yes = 1, no = 0), range 0-12. Individual dietary diversity scores (IDDSs) were calculated for children (0-8 items). Analysis included descriptive statistics and linear regression. Mean HDDS for the households with a child with a disability was 4.8 (SD 2.1) vs. 6.1 (SD = 2.2) among households without a child with a disability (p < 0.001). The individual score for children (IDDS) for households with children with disabilities was 2.6 (SD = 1.4) vs. 3.7 (SD = 1.6) for households without a child with a disability. Households with a child with a disability had a significantly lower HDDS and IDDS in unadjusted and adjusted models (p < 0.001). National policy must assure the most vulnerable populations, and often hidden, receive focused financial and food support.

Improving Participation among Youth with Disabilities within Their Unique Socio-Cultural Context during COVID-19 Pandemic: Initial Evaluation.

BACKGROUND: Participation in meaningful activities is important for quality of life among youth with disabilities; yet participation is often restricted during adverse times. This study aimed to explore the effectiveness of the Pathways and Resources for Engagement and Participation (PREP) intervention among ultra-Orthodox Jewish Israeli youth with disabilities during the COVID-19 pandemic. METHODS: A 20-week single-subject research design with multiple baselines measuring participation goals/activities was employed with two youths (15 and 19 years old) combining quantitative and qualitative descriptive data. Changes in participation levels were measured biweekly using the Canadian Occupational Performance Measure; COPM; participation patterns were measured using the Participation and Environment Measure-Children and Youth; PEM-CY pre- and post-intervention; parents' satisfaction was measured using the Client Satisfaction Questionnaire, CSQ-8. Semi-structured interviews were conducted post-intervention. RESULTS: Both participants significantly improved participation in all selected goals and participation patterns, and were highly satisfied with the intervention. The interviews revealed additional information on personal and environmental barriers, factors supporting intervention, and intervention effects. CONCLUSIONS: The results indicated that an environment-centered and family-centered approach can potentially improve the participation of youths with disabilities within their unique socio-cultural context, during adverse times. Flexibility, creativity, and collaboration with others also contributed to intervention success.

Preventive practices and parents' psychological health of children with disabilities after COVID-19 lockdown in Pakistan.

AIM: To find out differences in mental health outcomes between parents of children with different disabilities due to COVID-19 by determining the relationship between preventive practices, fear and stress in parents of disabled children. METHODS: A sample of 213 parents, whose children with disabilities (age range 1-16 years) were previously on regular follow-up before pandemic but did not take therapy for 1 year or more during COVID-19 lockdown and resumed sessions after a gap period, was surveyed. Perceived stress scale, fear and adherence to preventive measures questionnaire (developed by researchers) were used to measure stress, fear response of parents due to COVID-19 and preventive measures practiced by disabled children respectively. RESULTS: Parents who had financial difficulties and believed their disabled children had more chance of getting COVID-19 were more stressed. Parents who received any help from community/government were less stressed. One-way analysis of variance showed parents of cerebral palsy (CP) children reported more stress of COVID-19 as compared to parents of autism spectrum disorder (ASD), global developmental delay (GDD) and intellectual disability (ID). Parents of ID children reported more stress than ASD. Parents of CP children had more fear of loss of family members or getting infected with COVID-19 than GDD parents. ASD, GDD and CP children adhered more to preventive measures than ID children; however, CP children adhered more to preventive measures than GDD children. CONCLUSION: COVID-19 lockdown has persisting impact on mental health of parents of disabled children. Those parents experienced increased levels of stress and fear but reported adherence to preventive measures depending on the child's disability.

Being a Parent of Children with Disabilities during the COVID-19 Pandemic: Multi-Method Study of Health, Social Life, and Occupational Situation.

Parents of children with disabilities face challenges in their daily lives, but little is known about their experience of the COVID-19 pandemic. The objective of the study was to explore the experiences of parents of children with disabilities during the COVID-19 pandemic in Quebec, Canada. Forty parents of children with disabilities from Quebec, Canada (mean [SD] age: 41.2 [6.7]; 93% women) were selected from the Ma Vie et la pandémie (MAVIPAN) study. All 40 parents completed the MAVIPAN online questionnaires including the Depression, Anxiety and Stress Scale (DASS-21), Warwick-Edinburgh Mental Wellbeing short 7-item scale (WEMWBS), Social Provisions Scale-10 item (SPS-10), and the UCLA Loneliness Scale (UCLA-LS). A multi-method analysis was used to summarize questionnaires and thematically explore parents' experiences. Parents reported deterioration in their mental (50.0%) and physical (27.5%) health, with moderate levels of depression, stress, and anxiety, yet moderately positive well-being. Additional experiences included reduction in available supports (71.4%) and feelings of social isolation (51.4%). Our results highlighted reduced mental and physical health, limited and modified access to certain services, and reduction of social supports for some parents of children with disabilities. Health professionals, policymakers, and governments should be mindful of these challenges experienced by parents of children with disabilities.

Virtual Training on Stress Management for the Mothers of Children with Disabilities in the United Arab Emirates.

Parenting children with disabilities has consistently been reported to be associated with stress, and even more so among mothers who are primary caregivers. In non-Western contexts such as the United Arab Emirates (UAE), there is a dearth of research on maternal mental health in relation to raising children with disabilities and related mitigation strategies. During the COVID-19 pandemic (2020-2021), the Federal Government of the UAE used the Save the Child's Stress Checklist to assess the stress levels of 635 mothers who were raising children with disabilities in the northern part of the country. In the pre-test, an estimated 6% (36/635) of the mothers were found to be experiencing high levels of stress. Consequently, virtual stress management training was conducted, and 12 of the 36 mothers completed the full training. Wilcoxon's ranked test showed a reduction in their total, physical, emotional and cognitive stress at the end of the training. This study demonstrates the pressing need for ongoing training programmes to improve the mental health of mothers of children with disabilities in the UAE and similar contexts.

Socio-demographic disparities in receipt of clinical health care services during the COVID-19 pandemic for Canadian children with disability.

BACKGROUND: Little is known about the experience of receiving in-person and virtual clinical health care services during the COVID-19 pandemic for Canadian children with developmental disabilities and delays facing multiple layers of vulnerability (e.g., low income, low educational attainment families). We examined the relationship between socio-demographic factors and the receipt of these services (physical and mental health services) during COVID-19 for Canadian children with these conditions. METHODS: Data collected in Canada for the Global Report on Developmental Delays, Disorders and Disabilities were used. The survey: (1) was developed and disseminated in collaboration with caregivers of children with disabilities, (2) included topics such as response to the pandemic and receipt of services and supports, and (3) documented the experiences of a non-random convenience sample of caregivers of children (any age) with these conditions during and prior to the pandemic. We used four logistic regression models to assess the association between socio-demographic factors and receipt of services. RESULTS: Being a single parent, having low educational attainment (high school or less), having low income (making less than $40,000 per year), working less than full time (working part-time, working reduced hours due to COVID, retired, stay home parent or student), as well as male gender and older age of the child with disability were factors associated with decreased likelihood of receiving services. CONCLUSION: Our findings point to the need for tailoring services for families of children with disabilities, particularly low socioeconomic status families, to ensure continuity of care during public health emergencies.

Decreased access to therapeutic services for children with disabilities during COVID-19 stay-at-home orders in Western Pennsylvania.

PURPOSE: Assess the effects of stay-at-home orders on access to services utilized by families of children with disabilities (CWD). METHODS: Cross-sectional weekly surveys were fielded over four weeks, during which western Pennsylvania was under stay-at-home orders. Respondents were divided into families of CWD (N = 233) or without CWD (N = 1582). Survey questions included measures of socio-economic status, and families of CWD answered questions regarding access to services pre and post-initiation of stay-at-home orders. Differences between families with and without CWD were analyzed using chi-square tests. RESULTS: Among families of CWD that had used services previously, 76.6% of survey respondents stated that they had decreased access, with the greatest percentage experiencing loss among those previously utilizing early intervention (75.5%), outpatient therapies (69.1%), or school-based therapies (80.7%). Compared to families without CWD, families of CWD were more likely to report lower pre-COVID-19 annual incomes (p < 0.001), job or income loss related to COVID-19 (p < 0.001), and higher levels of perceived stress (p < 0.001). CONCLUSION: CWD experienced loss of services during stay-at-home orders implemented as COVID-19 mitigation measures. Due to decreased access to needed services, CWD may be at risk of medical complications and loss of developmental progress.

Mental health of children with and without special healthcare needs and of their caregivers during COVID-19: a cross-sectional study.

OBJECTIVE: To describe mental health outcomes and measures of pandemic burden of children with and without special healthcare needs, and their caregivers following the second wave of the COVID-19 pandemic in Germany. DESIGN: This is the second of a sequential series of cross-sectional online surveys conducted among caregivers of children ≤18 years since the onset of the COVID-19 pandemic, administrated between 2 April 2021 and 31 July 2021. MAIN OUTCOME MEASURES: Child and parental mental health were assessed using the Strengths and Difficulties Questionnaire and WHO-5 Well-being index. Children with Special Healthcare Needs (CSHCN) were identified using the CSHCN-Screener. Descriptive statistics, linear and hierarchical logistic regression modelling assessed associations between parent-reported child mental health problems and measures of pandemic burden, disease complexity, caregiver mental well-being and socioeconomic status. RESULTS: 521 participants were included in the final sample. There was a high prevalence of parent-reported mental health problems in n=302 (66.7%) children, particularly in CSHCN. Among caregivers, n=372 (72.5%) screened positive for depression. Logistic regression modelling showed a strong association of child mental health problems and disease complexity, parental mental well-being, increase in family conflict and inadequate social support. CONCLUSIONS: Our study identifies CSHCN as a particularly vulnerable group in terms of mental health outcomes. Psychosocial factors were important predictors of parent-reported child mental health problems. Policy measures should consider the importance of social support systems for vulnerable children and their families, and aim to provide accessible mental health support for caregivers.

When daily challenges become too much during COVID-19: Implications of family and work demands for work-life balance among parents of children with special needs.

Working parents of children with special needs (i.e., emotional, behavioral, and/or learning difficulties) face recurrent stressors that can make balancing work and family demands difficult. This strain has been magnified during the COVID-19 pandemic, as these parents often need to take on greater responsibility in supporting their children's remote learning, while still meeting their own job-related responsibilities. Accordingly, working parents of special needs children may be particularly vulnerable to adverse outcomes stemming from pandemic-induced changes to work (e.g., teleworking) and education (e.g., remote instruction). We sought to understand how daily family and work challenges influence satisfaction with work-life balance (WLB) in this priority population, with an emphasis on contextualizing this process through chronic job stress perceptions. Conducting a 10-day daily diary study in a sample of 47 working parents of special needs children during fall 2020, we observed family challenges to deplete positive affect from day-to-day, which undermined satisfaction with work-life balance. Furthermore, detrimental influences of daily family and work challenges on positive affect were magnified under chronic job stress, yielding diminished WLB satisfaction for more chronically stressed employees. We discuss how these findings can be harnessed to support particularly vulnerable employees during the COVID-19 pandemic and other chronic stress circumstances, while also drawing attention to how the pandemic may be exacerbating work-life inequities that some employees face. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Experiences of children with disabilities during the COVID-19 pandemic in Sweden: a qualitative interview study.

BACKGROUND: The impact of the COVID-19 pandemic on people with disabilities has been described as a 'triple jeopardy'. Not only have they experienced the negative social impacts of disease control measures, but access to required health services has been affected, and, not least, they are at increased risk of severe outcomes from COVID-19. This study aimed to determine how children with disabilities have experienced the pandemic in Sweden and its impact on their lives. METHODS: Six children (5-13 years) were interviewed via video conferencing. An interview guide was adapted based on the children's communicative abilities and included augmentative and alternative communication support. Reflective field notes were included in the analysis. The data were analysed using qualitative content analysis. RESULTS: Two themes were identified: The child's knowledge of Corona raises anxiety and fear; and Boring Corona makes the child even lonelier. The children had knowledge about and were worried about COVID-19, primarily about illness and death of their grandparents. The children longed for their grandparents and other social contacts at school, and life was described as boring and lonely. Many families lacked adequate tools to communicate with their children about the pandemic. CONCLUSION: Given adequate support, children with disabilities and communication difficulties can give insights to their unique life situations. The interviewed children reported significant impact on their life and school life. Children were worried about their grandparents based on their knowledge about the virus. The enthusiasm with which the children engaged in the interviews is testament to the need and right of all children, regardless of communicative competence, to voice their experiences.

Impact of the COVID-19 pandemic on therapy service delivery and functioning for school-aged children with disabilities in the United States.

BACKGROUND: The COVID-19 pandemic caused wide-scale disruptions to therapy services for children with disabilities in the United States. OBJECTIVE/HYPOTHESIS: We evaluated changes in therapy service delivery during the first four months of the pandemic, examined the impact of these changes on children's functioning, and analyzed factors predicting the loss of in-person services and receipt of teletherapy services. METHODS: We undertook an anonymous cross-sectional online survey of parents/caregivers of children with a disability aged 5-17 years. Changes in therapy service delivery and children's functioning were descriptively summarized. Logistic regressions examined individual and contextual predictors of loss of therapy services or receipt of teletherapy services. RESULTS: 402 parents of children aged 5-17 years old with one or more disabilities participated; 42% of children lost access to all therapy services, and 34% of children received at least one therapy service via telehealth. Children receiving a greater number of services pre-COVID and having access to more technological devices pre-COVID were significantly more likely to receive teletherapy. Over 40% of parents attributed declines in their child's motor, behavior, social, and communication skills to changes in therapy services; this impact was greater for children with multiple diagnoses. CONCLUSIONS: Findings underscore the negative impact of therapy service disruptions on children with disabilities.

"Together in a pressure cooker": Parenting children with disabilities during the COVID-19 lockdown.

BACKGROUND: COVID-19 has had a disproportionate and unprecedented impact on children with disabilities, their parents and families. This impact has been particularly evident during periods of lockdowns and severe restrictions. OBJECTIVE: This study employed the social model of disability to illuminate negative and positive experiences of Israeli parents of children with disabilities during the first COVID-19 lockdown, as well as the way social environments, particularly educational and welfare services, shape that experience. METHODS: The study draws upon thematic analysis of written responses of 80 Israeli parents to open-ended questions. RESULTS: Three main themes were found: (1) lack of responsiveness of both informal and formal supports to family needs, mainly in the educational and welfare systems; (2) juggling multiple roles and tasks along with the parents' routinely intensive caregiving role; and (3) the impact on the family's wellbeing and relationships. CONCLUSION: These results are discussed in light of the social model of disability, showing how social restrictions and barriers affect both negative and positive experiences of these families. Also discussed are practical implications for future crises.