Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study

Background: Social support and Quality of life (QoL) are important aspects of life and should be explored during the specific scenario of the pandemic. Aims: (i) to compare the perceived social support (PSS) in caregivers and the domains of QoL of the caregiver and the child with developmental disabilities (DD) and typical development (TD);(ii) to verify the existence of the association, in each group, between the PSS, and the domain of QoL of the caregiver and the child. Methods and Procedures: 52 caregivers of children with DD and 34 with TD participated remotely. We assessed PSS (Social Support Scale), children's QoL (PedsQL-4.0-parent proxy) and caregivers' QoL (PedsQL-Family Impact Module). The groups were compared for the outcomes using the Mann–Whitney test, and Spearman's test evaluated the correlation between the PSS and the QoL (child and caregiver) in each of the groups. Outcomes and Results: There was no difference between groups for PSS. Children with DD presented lower values in PedsQL total, psychosocial health, physical health, social activities, and school activity. Caregivers of children with TD presented lower values in PedsQL family total, physical capacity, emotional aspect, social aspect, daily activities, and higher value in communication. In the DD group, we found a positive relationship between PSS with child: Psychosocial Health (r = 0.350) and Emotional Aspect (r = 0.380), and with family: Total (r = 0.562), Physical Capacity (r = 0.402), Emotional Aspect (r = 0.492), Social Aspect (r = 0.606), Communication (r = 0.535), Concern (r = 0.303), Daily Activities (r = 0.394) and Family Relationships (r = 0.369). In the TD group, we found that PSS was positively associated with Family: Social Aspect (r = 0.472) and Communication (r = 0.431). Conclusions and Implications: During the COVID-19 pandemic, despite both groups presenting similar PSS, there are important differences in QoL between them. For both groups, greater levels of perceived social support are associated with greater caregiver-reported in some domains of the child's and caregiver's QoL. These associations are more numerous, especially for the families of children with DD. This study provides a unique view into the relationships between perceived social support and QoL during the "natural experiment” of living through a pandemic.

Perceived Social Support and Quality of Life of Children with and without Developmental Disabilities and Their Caregivers during the COVID-19 Pandemic in Brazil: A Cross-Sectional Study.

BACKGROUND: Social support and Quality of life (QoL) are important aspects of life and should be explored during the specific scenario of the pandemic. AIMS: (i) to compare the perceived social support (PSS) in caregivers and the domains of QoL of the caregiver and the child with developmental disabilities (DD) and typical development (TD); (ii) to verify the existence of the association, in each group, between the PSS, and the domain of QoL of the caregiver and the child. METHODS AND PROCEDURES: 52 caregivers of children with DD and 34 with TD participated remotely. We assessed PSS (Social Support Scale), children's QoL (PedsQL-4.0-parent proxy) and caregivers' QoL (PedsQL-Family Impact Module). The groups were compared for the outcomes using the Mann-Whitney test, and Spearman's test evaluated the correlation between the PSS and the QoL (child and caregiver) in each of the groups. OUTCOMES AND RESULTS: There was no difference between groups for PSS. Children with DD presented lower values in PedsQL total, psychosocial health, physical health, social activities, and school activity. Caregivers of children with TD presented lower values in PedsQL family total, physical capacity, emotional aspect, social aspect, daily activities, and higher value in communication. In the DD group, we found a positive relationship between PSS with child: Psychosocial Health (r = 0.350) and Emotional Aspect (r = 0.380), and with family: Total (r = 0.562), Physical Capacity (r = 0.402), Emotional Aspect (r = 0.492), Social Aspect (r = 0.606), Communication (r = 0.535), Concern (r = 0.303), Daily Activities (r = 0.394) and Family Relationships (r = 0.369). In the TD group, we found that PSS was positively associated with Family: Social Aspect (r = 0.472) and Communication (r = 0.431). CONCLUSIONS AND IMPLICATIONS: During the COVID-19 pandemic, despite both groups presenting similar PSS, there are important differences in QoL between them. For both groups, greater levels of perceived social support are associated with greater caregiver-reported in some domains of the child's and caregiver's QoL. These associations are more numerous, especially for the families of children with DD. This study provides a unique view into the relationships between perceived social support and QoL during the "natural experiment" of living through a pandemic.

Training Intervention and Program of Support for Fostering the Adoption of Family-Centered Telehealth in Pediatric Rehabilitation: Protocol for a Multimethod, Prospective, Hybrid Type 3 Implementation-Effectiveness Study.

BACKGROUND: Children with disability face long wait times for rehabilitation services. Before the COVID-19 pandemic, telehealth adoption was low across pediatric rehabilitation. Owing to the COVID-19 pandemic restrictions, pediatric therapists were asked to rapidly shift to telehealth, often with minimal training. To facilitate the behavior changes necessary for telehealth adoption, provision of appropriate evidence-based training and support is required. However, evidence to support the effective implementation of such training is lacking. The successful real-world implementation of a training intervention and program of support (TIPS) targeting pediatric therapists to enhance the adoption of family-centered telerehabilitation (FCT) requires the evaluation of both implementation and effectiveness. OBJECTIVE: This study aimed to evaluate TIPS implementation in different pediatric rehabilitation settings and assess TIPS effectiveness, as it relates to therapists' adoption, service wait times, families' perception of service quality, and costs. METHODS: This 4-year, pan-Canadian study involves managers, pediatric occupational therapists, physiotherapists, speech-language pathologists, and families from 20 sites in 8 provincial jurisdictions. It will use a multimethod, prospective, hybrid type 3 implementation-effectiveness design. An interrupted time series will assess TIPS implementation. TIPS will comprise a 1-month training intervention with self-paced learning modules and a webinar, followed by an 11-month support program, including monthly site meetings and access to a virtual community of practice. Longitudinal mixed modeling will be used to analyze indicators of therapists' adoption of and fidelity to FCT collected at 10 time points. To identify barriers and facilitators to adoption and fidelity, qualitative data will be collected during implementation and analyzed using a deductive-inductive thematic approach. To evaluate effectiveness, a quasi-experimental pretest-posttest design will use questionnaires to evaluate TIPS effectiveness at service, therapist, and family levels. Generalized linear mixed effects models will be used in data analysis. Manager, therapist, and family interviews will be conducted after implementation and analyzed using reflective thematic analysis. Finally, cost data will be gathered to calculate public system and societal costs. RESULTS: Ethics approval has been obtained from 2 jurisdictions (February 2022 and July 2022); approval is pending in the others. In total, 20 sites have been recruited, and data collection is anticipated to start in September 2022 and is projected to be completed by September 2024. Data analysis will occur concurrently with data collection, with results disseminated throughout the study period. CONCLUSIONS: This study will generate knowledge about the effectiveness of TIPS targeting pediatric therapists to enhance FCT adoption in pediatric rehabilitation settings, identify facilitators for and barriers to adoption, and document the impact of telehealth adoption on therapists, services, and families. The study knowledge gained will refine the training intervention, enhance intervention uptake, and support the integration of telehealth as a consistent pediatric rehabilitation service option for families of children with disabilities. TRIAL REGISTRATION: ClinicalTrials.gov NCT05312827; https://clinicaltrials.gov/ct2/show/NCT05312827. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): PRR1-10.2196/40218.

Person-reported perspectives on support availability for people with disabilities during the COVID-19 pandemic in Quebec.

OBJECTIVES: To identify the perception of the availability of community support and the support needs of autistic people and people with disabilities, from their own perspectives and from those of their caregivers at the time of the COVID-19 pandemic in Quebec, to assess the association between the available support and the perceived stress levels to evaluate the role of perceived social support as a potential buffer of this association. METHODS: A total of 315 respondents participated in a 4-min online survey across the province of Quebec by snowball sampling. Community support was defined as availability of adapted healthcare, adapted information, adapted educational services and community services. RESULTS: The community support and services during the COVID-19 pandemic were not available or were not sufficiently adapted to their needs. About 40% of autistic people or people with disabilities and 44% of their caregivers perceived their days as being quite stressful or extremely stressful. This is twice the rate of that of the general population in non-pandemic time. Nevertheless, social supports can play a mediating role in attenuating the effects of the absence of adapted services on the stress level of this vulnerable population. CONCLUSION: The non-availability of adapted services was related to an increase in the stress level in this population. Our study adds that other than social support, adapted healthcare/tele-healthcare and in-home support services could reduce the impact of the pandemic on the stress level of autistic people and people with disabilities. Adapted educational services and necessary equipment for online education for people without resources could reduce the impact on the stress level in caregivers. People with disabilities and their caregivers are one of the most vulnerable groups in our society. Public health measures of containment and mitigation need to consider more their specific needs.

RéSUMé: OBJECTIF: Identifier la perception de la disponibilité du soutien communautaire et les besoins de soutien des personnes autistes et des personnes en situation de handicap, de leurs perspectives mêmes et de celles de leurs aidants durant la pandémie de COVID-19 au Québec, et évaluer l'association entre le soutien disponible et les niveaux de stress perçus afin d'évaluer le rôle du soutien social perçu comme un médiateur de cette association. MéTHODE: Un total de 315 répondants ont participé à un sondage en ligne de 4 minutes à travers la province de Québec par échantillonnage en boule de neige. Le soutien communautaire a été défini comme la disponibilité de soins de santé, d'informations, et de services éducatifs et communautaires adaptés à leurs besoins. RéSULTATS: Le soutien communautaire, et les services disponibles pendant la pandémie de la COVID-19, n'étaient pas disponibles ou étaient insuffisamment adaptés à leurs besoins. Environ 40 % des personnes autistes ou en situation de handicap et 44 % de leurs proches aidants perçoivent leurs journées comme assez ou extrêmement stressantes. C'est deux fois plus que le taux dans la population générale en période non pandémique. Néanmoins, le soutien social peut jouer un rôle médiateur en atténuant les effets de l'absence de services adaptés sur le niveau de stress de ces populations vulnérables. CONCLUSION: La non-disponibilité de services adaptés augmente le niveau de stress de cette population. Notre étude ajoute que, outre le soutien social, les soins de santé adaptés, les services de soutien à domicile et les soins de santé à distance pourraient réduire l'impact de la pandémie sur le niveau de stress des personnes autistes et en situation de handicap et que les services éducatifs adaptés et l'aide à l'éducation à distance pourraient réduire l'impact sur le niveau de stress des proches aidants. Les personnes en situation de handicap et leurs proches aidants constituent l'un des groupes les plus vulnérables de notre société. Les mesures de santé publique d'atténuation de la pandémie doivent tenir compte de leurs besoins.

Impact of lockdown and school closure on children's health and well-being during the first wave of COVID-19: a narrative review.

Background: In the context of containment measures against the COVID-19 pandemic, the aims were to examine the impact of lockdown and school closures on childs' and adolescents' health and well-being and social inequalities in health. Methods: Literature review by searching five databases until November 2020. We included quantitative peer-reviewed studies reporting health and well-being outcomes in children (0-18 years) related to closure measures' impact due to COVID-19. A pair of authors assessed the risk of bias of included studies. A descriptive and narrative synthesis was carried out. Findings: Twenty-two studies, including high-income, middle-income and low-income countries, fulfilled our search criteria and were judged not to have an increased risk of bias. Studies from Australia, Spain and China showed an increase in depressive symptoms and decrease in life satisfaction. A decrease in physical activity and increase in unhealthy food consumption were shown in studies from two countries. There was a decrease in the number of visits to the emergency department in four countries, an increase in child mortality in Cameroon and a decrease by over 50% of immunisations administered in Pakistan. A significant drop of 39% in child protection medical examination referrals during 2020 compared with the previous years was found in the UK, a decrease in allegations of child abuse and neglect by almost one-third due to school closures in Florida, and an increase in the number of children with physical child abuse trauma was found in one centre in the USA. Interpretation: From available reports, pandemic school closure and lockdown have adverse effects on child health and well-being in the short and probably long term. We urge governments to take the negative public health consequences into account before adopting restrictive measures in childhood.