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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.

We examined predictors of mental health difficulties and wellbeing in caregivers of children with autism in the Pre-school Autism Communication Trial cohort in middle childhood (N = 104). Child’s intellectual disability, daily living skills impairment, elevated emotional and behavioural difficulties, high educational level of caregiver and household income below the median significantly predicted caregivers’ mental health difficulties, but autism severity, child communication skills and family circumstances did not. Lower caregiver mental wellbeing was predicted by elevated child emotional and behavioural difficulties. The need to support the mental health and wellbeing of caregivers of children with autism is discussed in light of the results.

The aim of this meta-analysis was to investigate factors associated with resilience in familial caregivers of children with developmental disabilities. The protocol was registered in the PROSPERO database, with the registration number CRD42018105180. Several electronic databases were searched for studies. A random-effects meta-analysis was performed on 26 selected studies that associated resilience to an array of other variables (i.e., psychological distress, social support, coping, perceived health, life satisfaction). Overall, the significant pooled effect sizes were small to medium, ranging from r = 0.291 for coping to r = 0.442 for social support. Although the literature on the topic has improved, there is a lot of study heterogeneity and the need for focusing on male caregivers becomes evident.

Caregivers of a child with a neurodevelopmental disability are more vulnerable to mental health difficulties. These difficulties are influenced by the child’s challenging behaviours, and the caregiver’s coping strategies; factors impacted by the COVID-19 pandemic. An online mixed methods survey was conducted on caregivers of children with neurodevelopmental disabilities (n = 43) and children who are typically developing (n = 67). The results showed that presence of challenging behaviours related to neurodevelopmental disability, and caregiver coping strategies predicted caregiver psychological distress during lockdown. Themes that emerged included ‘confusing messages and guidance’, ‘loss of freedom’ and ‘unsupported and forgotten’. The results demonstrate the pressing need for the implementation of appropriate support to protect the mental health of caregivers across the UK.

Although caring for a child with intellectual and developmental disabilities (IDD) can have positive outcomes, parents may be at a greater risk of depression and anxiety, due to a number of associated stressors, such as increased caregiver demands and financial strain. This systematic review updates previous data, exploring the relationship between parenting a child with IDD and parental depression and anxiety. Five electronic databases were searched for eligible English-language articles, published between January 2004 and July 2018. All epidemiological study designs were eligible, provided the level of depression and/or anxiety was compared between parents of children (aged <18) with and without IDD. No limit was placed on geographic location. The proportion of positive associations between parenting a child with IDD and depression/anxiety were disaggregated by disability type, geographic region, and sample size. The percentage of parents at risk of moderate depression or anxiety were calculated using recognised clinical cut-off scores for each screening tool. Meta-analyses, in which pooled effect sizes of elevated depression and anxiety symptoms were calculated, were conducted across two IDD conditions, autism and cerebral palsy. Of the 5,839 unique records screened, 19 studies fulfilled the inclusion criteria. The majority of studies were conducted in high-income (n = 8, 42%) or upper-middle income countries (n = 10, 53%). Of the 19 studies, 69% focused on parents of children with cerebral palsy (n = 7, 37%) or autism (n = 6, 32%). Nearly all studies found a positive association between parenting a child with IDD and depression (n = 18, 95%) and anxiety (n = 9, 90%) symptoms. Factors associated with higher levels of depression symptoms amongst parents of children with IDD included disability severity (n = 8, 78%) and lower household income (n = 4, 80%). Approximately one third (31%) of parents of children with IDD reach the clinical cut-off score for moderate depression, compared with 7% of parents of children without IDD. 31% of parents of children with IDD reach the cut-off score for moderate anxiety, compared with 14% of parents of children without IDD. The meta-analyses demonstrated moderate effect sizes for elevated depression amongst parents of children with autism and cerebral palsy. Results indicate elevated levels of depressive symptoms amongst parents of children with IDD. Quality concerns amongst the existing literature support the need for further research, especially in low- and middle-income countries.

The lives of caregivers can be deeply impacted by having a child with a developmental disability (DD). To offset those impacts, caregivers may engage in accommodations, or strategies to bolster everyday functioning. The nature and extent of these accommodations can provide insight into how the family is doing and what supports are needed from a family-centered perspective. This paper presents the development and preliminary validation of the Accommodations & Impact Scale for Developmental Disabilities (AISDD). The AISDD is a rating scale that measures day-to-day accommodations and impacts of raising a child with a DD. A sample of 407 caregivers of youth with DDs (M age = 11.7 years; 63% males) completed the AISDD, along with measures of caregiver strain, daily challenges, child adaptive behavior, and behavior and emotional regulation. The AISDD is a unidimensional, 19-item scale with excellent internal consistency (ordinal alpha = .93) and test–retest (ICC = .95) reliability. Scores were normally distributed and sensitive to age (r = − .19), diagnosis (ASD + ID > ASD > ID), adaptive functioning (r = − .35), and challenging behaviors (r = .57). Finally, the AISDD showed excellent convergent validity with similar measures of accommodations and impacts. These findings support the use of the AISDD as a valid and reliable tool for measuring accommodations among caregivers of individuals with DDs. This measure shows promise in its ability to identify which families may need additional support for their children.

Parents of children with autism spectrum disorder (ASD) face higher levels of caregiver strain compared to parents of children with other disabilities. This study examined child clinical features that predict high levels of caregiver strain for 374 parents of children with ASD. Caregiver strain was measured using the Caregiver Strain Questionnaire (CGSQ) objective, subjective internalized, and subjective externalized subscales. Confirmatory factor analysis indicated an acceptable fit for the original CGSQ three-factor solution. The strongest child predictors across CGSQ subscales were: disruptive behavior for objective strain, autism severity and disruptive behavior for subjective internalized strain, and oppositional behavior and hyperactivity for subjective externalized strain. Individualized interventions that attend to specific elements of parental strain may reduce strain and improve family wellbeing.

Background Continuance utilization of rehabilitation services among children with disabilities is not optimal. However, little is known about the factors that influence whether rehabilitation is continued. Therefore, a cross-sectional study was conducted in a sample of family caregivers in China to explore the relationship between perceived rehabilitation benefit, expectation, satisfaction, self-efficacy, continuance intention and continuance behavior. Methods A total of 368 family caregivers of children with disabilities were recruited from rehabilitation institutions through the convenience sampling method in Shanghai and Kunshan, China. We developed a research model that drives continuance utilization of rehabilitation services and proposed 13 research hypotheses based on the Expectation Disconfirmation Theory (EDT) and the extended Expectation-Conformation Model of Information System Continuance (extended ECM-ISC model). A structure equation model was built to test the hypotheses. Results Among the 13 research hypotheses we proposed, 11 of them were supported. The results suggest that family caregivers’ continuance intention of taking children with disabilities for rehabilitation services was associated with their continuance behavior. Satisfaction and self-efficacy were associated with continuance intention. Perceived rehabilitation benefit and expectation were associated with satisfaction. Expectation was associated with perceived rehabilitation benefit. Furthermore, we found that perceived rehabilitation benefit was positively associated with continuance behavior from three different paths, whereas expectation had an indirect correlation with continuance behavior via the sequential mediation variables of satisfaction and continuance intention. In addition, satisfaction and self-efficacy were found to have a significant indirect correlation with continuance behavior via continuance intention. Conclusions Based on these findings, improvements in perceived rehabilitation benefit, expectation, self-efficacy, satisfaction, and continuance intention are the important issues contributing to the enhancement of continuance utilization of rehabilitation services among children with disabilities.

Amidst the ongoing novel Coronavirus disease pandemic, children with developmental disabilities warrant specific attention to minimise having disproportionate consequences. These children are especially vulnerable to the effects of the pandemic due to (1) Greater healthcare needs, (2) Dependency on community-based services and (3) Mental health concerns. Healthcare professionals, public health systems and the society needs to come together to advocate for these children by optimising access to healthcare and community intervention services, promoting mental well-being and caregiver welfare. The consequences of missed present-day opportunities might only be evident in the years to come in these children. Hence, despite the prolonged pandemic, with consequent limitations in availability of resources, children with developmental disabilities should continue to be supported.