Burden of care and quality of life in caregivers of children and adolescents with autism spectrum disorder.

The research aimed to evaluate the effect of online social support (OSS) on the psychological well-being (PWB) of caregivers of children with autism spectrum disorder (ASD). The role of gender as a moderator variable in the relationship between online social support to psychological well-being also was assessed. A quantitative research design was used to collect data using questionnaires of PWB and OSS adapted into Bahasa given to 154 caregivers of children with ASD who live in Indonesia. Data were analyzed using SMART PLS 3.0. Online social support affects the psychological well-being of caregivers of children with ASD. At the dimension level, some dimensions of OSS also influence PWB. There was no difference in the effect of online social support on psychological well-being in the male and female groups, meaning that online social support had the same effect on psychological well-being in the male and female groups. The following study is suggested to combine the study with a qualitative method to gain data from caregivers on how OSS impact their PWB, so a holistic viewpoint is gained. It can be a suggestion to policymakers to provide beneficial online social media for caregivers of children with ASD.

Online Social Support and Psychological Well-Being of Caregivers of Children with Autism Spectrum Disorder

Fathers of children with autism spectrum disorder (ASD) might be at increased risk of becoming lonely. In the current study, we explored the differences in loneliness between fathers of children with and without ASD and identified interpersonal and familial resources (social support, family cohesion, and family adaptability) that might be related to levels of loneliness. Using a cross-sectional design, 348 fathers (of 114 children with ASD and 234 without) completed a series of questionnaires. Fathers of children with ASD reported higher levels of loneliness and lower levels of social support and family cohesion. A moderated mediation model indicated that the interaction between social support and family cohesion mediated the association between ASD group (i.e., ASD vs. non-ASD) and fathers' loneliness. Findings suggest the importance of interpersonal and familial resources (e.g., perceived social support and family cohesion) for family members at risk of loneliness.

https://onlinelibrary.wiley.com/doi/pdfdirect/10.1111/famp.12877

Vulnerability to loneliness among fathers of children with autism spectrum disorder: The role of interpersonal and familial resources.

Background Research has shown that parents of children with autism spectrum disorder (ASD) suffered high levels of stress during the COVID-19 pandemic and faced poor family quality of life (FQOL). However, little is known about the inherent dynamic interaction between pandemic stress and FQOL, especially in the Chinese cultural context. Aims This study provides preliminary evidence by examining the relationships among pandemic stress, parental involvement, and FQOL for children with autism in mainland China. Method A total of 709 parents of children with autism completed measures of FQOL, parental involvement, and pandemic stress. Structural equation modeling was employed to examine the interrelations among these variables. Results Pandemic stress has direct effect and indirect effect mediated by parental involvement on FQOL. Two dimensions of pandemic stress had a direct effect on FQOL (β1 = 0.11; β2 = −0.55) and three dimensions had an indirect effect on FQOL through parental involvement (β1 = −0.097; β2 = 0.257; β3 = 0.114). Conclusion Stress related to the COVID-19 pandemic affects family quality of life for children with autism in complex ways. Policies may be developed to enhance parental pragmatic hopefulness in the anti-epidemic victory and alleviate negative physical and mental reactions caused by the pandemic.

/pdf/parents-pandemic-stress-parental-involvement-and-family-18maklk1.pdf

Parents' pandemic stress, parental involvement, and family quality of life for children with autism

<sec> <title>UNSTRUCTURED</title> The purpose of this present study was to conduct a scoping review to contribute to the understanding of the types and characteristics of online support groups (OSGs) for family caregivers. Over the last decade the number of OSGs increased exponentially, however there is not consensus on what factors or characteristics of OSG contribute to the development of social support within these groups or what types of OSG are available to family caregivers. Following the Prisma-ScR guidelines, 19 studies were included in the review. The findings explore (a) the social support groups are online for adult family caregivers (b) the communication medium and characteristics of these OSGs and (c) the psychosocial or other factors that made OSG successful or unsuccessful for participants. The analysis process generated two overarching categories of safe communication and engagement described groups with a focus on similar others and shared life experience shared in a non-judgemental space overseen by trained peer or professional facilitators. A general recommendation for practitioners is that it appears important to build in active moderation and multi-faceted structures of support to meet different levels of caregiver needs and ability to engage. </sec> 

Ruodan Wang

Papers

Coping, social support, and family quality of life for caregivers of individuals with autism: Meta-analytic structural equation modeling