Here you can find ongoing surveys that can help understand the impact of the COVID-19 crisis on families and children with disabilities.
Assessing the impact of changes in therapy service delivery during the COVID-19 shutdown on function, socialization and participation of children with disabilities
We want to learn how changes in therapy services may be affecting functioning and participation for children with disabilities, and how families are using devices and technologies to meet therapeutic and social needs during this time.
This information will help us understand how to best support children with disabilities during and after this time.
Status: Ongoing
Region: United States
Staying active in isolation: tele-rehabilitation for children with chronic diseases
The objective of this survey is to analyze the therapist’s perception of the assistance to children with chronic conditions through tele-rehabilitation, encompassing factors such as treatment adherence from families, effectiveness of the tele-rehabilitation interventions, changes in treatment goals during social isolation.
Status: Ongoing
Region: Brazil
How to participate
Survey’s Link : Survey’s link
Co-SPACE study, COVID-19: Supporting Parents Adolescents and Children during EPIdemics
The purpose of the study is to determine how parents caregivers children and adolescents are spending their time during COVID-19 pandemic, Demographic details of the participants, their mental health and behaviour during this period (SDQ and DAss questionnaires) to caregivers and children) their perceptions and understanding of the COVID-19 pandemic, their worries about contracting or transmitting infection to others, and other related issues such as economic and educational problems, their needs for explanation and reassurance around COVID-19 matters. The medium by which they would like to receive this information and support.
Status: Ongoing
Region: Western Cape Province
How to participate
Survey’s Link : Survey’s link
COVID-19 supports for people with disabilities and caregivers
In this study we want to get a better understanding of the current situation of people with disabilities at the time of coronavirus. Specifically, we want to know:
- What are the concerns and challenges that people with disabilities and caregivers of people with disabilities (both adults and children) are facing at this time?
- What supports do people with disabilities and caregivers of people with disabilities need to address these challenges, and are these supports available
- We are interested in the experiences of people of all ages: children, youth, adults and the elderly.
The goal is to publish the results online and in publications. Our hope is to inform policy makers about the most pressing issues and to share positive examples of removing barriers and improving access to care.
Status: Ongoing
Region: International
Experiences of quarantine COVID 19 in families having a child with Autism Spectrum Disorder
The rapid spread and high mortality rate of COVID-19 have taken the world by surprise. In Chile, many mental health services have reduced their outpatient care, responding only to emergencies. Children with Autism Spectrum Disorder (ASD) have been deprived of professional help and many families have been left without the support of the Institutions that deliver therapeutic interventions. Our aim is to know the experience and to identify issues present at families with ASD children during the period of confinement due to the COVID-19 pandemic, who are part of our local mental health ASD program.
Status: Ongoing
Region: Chile
Learn more mcoelhom@uc.cl
Global Report on Developmental Delays, Disorders and Disabilities
The purpose is to document the lived experience of caregivers of children with disabilities in Canada before and during the pandemic (e.g., identify service needs) & contribute to the world health organization’s global report on developmental delays, disorders, and disabilities.
Status: Ongoing
Region: Canada
How to participate
Survey’s link: https://earlyautism.ca/
Families Facing covid-19: Perspectives from caregivers of autistic individuals
The COVID-19 pandemic is a stressful time for everyone, and it may be especially stressful for autistic individuals and their families. Regular routines may be disrupted, finances may be tight and uncertain, and supports and services that families may have otherwise been accessing may be harder to reach. The aim of this study is to understand the impact of covid-19 on the lives of autistic children, youth, and adults, and their families.
Status: Ongoing
Region: Canada
How to participate
Survey’s link: https://www.familiesfacingcovid19.com/
Usage of Telehealth services by health professionals during “corona virus” outbreak
The overall goal of the survey is to examine the satisfaction of the treatment and support via telehealth as means to improve quality of life of service recipients; and to examine the professional (therapists) satisfaction of providing quality service via telehealth.
Status: Ongoing
Region: Global
How to participate
Survey’s link: Click here
The impact of the COVID-19 pandemic on the National Disability Insurance Scheme allied healthcare services and consumer perceptions about tele-health
The aim of this project is to investigate how the COVID-19 pandemic has impacted the delivery of services funded by the National Disability Insurance Scheme (NDIS) for adults and children with a disability. We will conduct a survey to examine the experiences people with a disability have had accessing NDIS services during the pandemic, specifically focusing on the perceived acceptability, effectiveness, and safety of services that have transitioned to tele-health delivery. For people who are not accessing care via tele-health, barriers to doing so will be explored. This information will inform decision making around future funding of tele-health by the NDIS during COVID-19 restrictions and once the pandemic has ended.
Status: Ongoing
Region: Australia
How to participate
Contact us : belinda.lawford@unimelb.edu.au
The impact of covid-19 on service provision for children and young people following major traumatic injury
COVID-19 has led to rapid changes in service provision for young people with disability. In 2019, we conducted an environmental scan of leading national and international organizations from health, education, insurance and disability sectors to understand rehabilitation models for young people with disability due to major traumatic injuries. We are now presented with a unique opportunity to build on this work to examine the organizations’ responses during the acute, adjustment and recovery stages of the COVID-19 pandemic. Specifically, we aim to identify enablers, barriers, and best-practice innovative approaches to meeting the ongoing needs of young people with traumatic injuries.
Status: Ongoing
Region: Australia
How to participate
Survey’s link: Click here
COVID-19 pandemic and disability considerations: experiences of persons with disabilities and disabled people organizations, South Africa
The purpose of this survey is to gather information (i) on the experiences of persons with disabilities and organisations of persons with disabilities, and (ii) identify possible strategies and recommendations for disability inclusive pandemic responses. People with disabilities are anxious about possible health resource rationing during pandemics and difficulty gaining access to health care.
Status: Ongoing
Region: Western Cape Province
How to participate
Survey’s link: Click here
International Survey of Telehealth in Developmental-Behavioral and Social Pediatrics
This survey aims to understand the extent to which telehealth is being used during the COVID-19 pandemic by physicians who work with children with disabilities. it also aims to capture some of the organizational and personal barriers faced by physicians in the use of telehealth.
Status: Ongoing
Region: International
How to participate
Survey’s link: Click here
The impact of transitioning to remote learning due to the COVID-19 pandemic response on Victorian school students with disability
This research aims to investigate the impact of remote learning due to the COVID-19 pandemic response on Victorian school students with disability and their families. The research will document experiences of students with disability and their families at different time points as the COVID-19 situation and educational response in Victoria, Australia evolves. the study uses in-depth interviews with students and their parents or caregivers, and captures the experience of primary and secondary students in mainstream and specialist schools.
Status: Ongoing
Region: Australia
How to participate
Contact us : marella.m@unimelb.edu.au
Paediatric Telehealth Experience Survey
The survey is being adopted by a variety of departments across the two paediatric hospitals that make up the SYDNEY CHILDREN’S HOSPITALS NETWORK. The purpose of the survey is to:
- Evaluate the acceptance of telehealth by patients/families
- Track the patient/family reported quality of the technology USED
- Inform quality improvements for services using telehealth
- Provide a data-informed argument for the continuation or otherwise of telehealth post-COVID-19
- Introduce services to Patient Reported Experience Measures by combining them with more broadly understood survey questions about technical quality and ease of use
Status: Ongoing
Region: Australia
How to participate
Contact us : Rhiannon.beck@health.nsw.gov.au
Impact of social distancing on the functionality of children and adolescents with neuromotor disabilities in pandemic period
To assess the impact of social distancing on the functionality of children and adolescents with neuromotor disabilities, aged 3 to 17 years.
Status: Ongoing
Region: Brazil
How to participate
Contact us : bia10.helena@gmail.com
Mother-child interaction in motor development of infants with biological risk in the first year of life: Impact of environmental factors in times of the COVID-19 pandemic (interação mãe-filho no desenvolvimento motor de lactentes de risco biológico no primeiro ano de vida: Impacto de fatores ambientais em tempos de pandemia da COVID-19)
To verify the impact of the quality of the mother-child interaction on the development of motor abilities of infants with biological risks factors and typical neurodevelopment in the first year of life and to identify environmental facilitators and barriers in times of the COVID-19 pandemic.
Status: Ongoing
Region: Brazil
How to participate
Survey link: Click here
COVID-19 response strategy for persons with disabilities in Southern Africa
The survey is targeted at people with disability. the purpose is to understand how COVID-19 is affecting them and how they feel about the ongoing response interventions at the local community, national and even regional levels. the survey explores how they first heard about COVID-19 and how they gauge the ongoing response at local, national and regional levels.
Status: Ongoing
Region: Southern African region
How to participate
Survey link: Click here
Soutien aux personnes autistes, personnes en situation de handicap et aux proches aidants pendant la pandémie de la COVID-19-enquête (Support for people with autism, people with disabilities and caregivers during the COVID-19 pandemic – investigation)
Little has been compiled on how people with disabilities, mainly autistic persons, families/caregivers of children or adults with disabilities are being affected and facing the pandemic. People with disabilities and their families are one of the most vulnerable groups in our society. Therefore, it is necessary to know the support needed from this vulnerable population in order to respond better to them.
Status: Ongoing
Region: Canada (Québec)
How to participate
Survey link: Click here
Barometro COVID-19 e paralisia cerebral (COVID-19 barometer and cerebral palsy)
We are part of a national surveillance of cerebral palsy and surveillance of cerebral palsy in Europe. Now, we developed a new survey about repercussions of COVID 19 on people with cerebral palsy, their families and the technicians who work with them.
Status: Ongoing
Region: Portugal
How to participate
Survey link: Click here
Home-based rehabilitation services for Children with disability during the outbreak of COVID-19
In order to better understand the online home-based rehabilitation in our hospital, compliance, its influencing factors, and guide us to further improve services, we prepared a questionnaire for caregivers. that involve the basic information of disabled children, the family, online guidance, home-based rehabilitation implementation and their rehabilitation needs. We also want to provide supports for Shaanxi Disabled Persons’ Federation in formulating children’s rehabilitation and assistance policies.
Status: Ongoing
Region: China
More information here Lihx121@sina.com
Real-time monitoring of disaster-related mental health impact of COVID-19 on Canadian children, youth and families: A cross collaboration of community and clinical cohorts. A POND Collaboration
IThis study is being done because we want to better understand the impact of COVID-19 Emergency Measures (EMs) on children and youth mental health over time (e.g. CRisis/afar questionnaire). There are four research teams that have joined together to help better understand the mental health and well-being of Canadian families during the COVID-19 pandemic. By examining what is happening right now with the mental health effects of COVID-19 EMs in children/youth, we hope to be able to answer questions about the EMs’ impact on families’ mental health, well-being, and family functioning during this pandemic and into the post-pandemic period.
Status: Ongoing
Region: Canada
Please email covid.mentalhealth@sickkids.ca if you are interested in participating
