Study: Exploring the Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities and their Caregivers

Study: Exploring the Impact of COVID-19 on Individuals with Intellectual and Developmental Disabilities and their Caregivers

Introduction: Valerie Bradley, President Emerita of the Human Services Research Institute, is working in collaboration with researchers from 19 countries on a study about the impact of COVID 19 on people with intellectual disabilities their families and service providers. The study is led by Associate Professor Christine Linehan, Director of the UCD Centre for Disability Studies at University College Dublin in Ireland. Christine is also the chair of the comparative policy special interest group of the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD).

What is this research about? IASSIDD research group has members from across the globe and are inviting adults in selected countries to take part in an online anonymous survey. The survey will explore the impact and experiences of COVID-19 on people with individuals with intellectual and developmental disabilities (of any age, including children and adults) and their adult caregivers, including family members and paid staff.

Why this research? There is no global data on the impact of a pandemic on individuals with intellectual disabilities and their caregivers. This online anonymous survey will provide unique data on your experiences.

Why have you been invited to take part? You have been invited to take part because you are a caregiver, either family member or paid staff, to one or more people who have an intellectual and developmental disability. You must be 18 years or over to take part in this survey.

How long will the survey take? The survey will take approximately 25 minutes to complete. We recommend that you make a cup of tea, coffee or other favorite beverage and find a quiet place where you can complete the survey without being disturbed. 

How will your data be used? Your anonymous data will be included in a large dataset of caregivers from many countries throughout the world which is managed by University College Dublin. The dataset will be shared with researchers on this project and will be archived into international data repositories approved by the funding body so that any other researchers interested in this topic can also access these data. Researchers may present this data in reports, theses, academic papers and at international conferences. Your data will only ever be reported as part of the full dataset, not individually. It is important to remember that as your data is anonymized, it will not be possible for researchers to identify you or any other participant. 

What will happen if you decide to take part in this research study? You will be invited to complete an online anonymous survey. You will be asked to confirm that you are over 18 years of age and that you consent to take part. You will then be asked about your experiences supporting individual(s) who have intellectual and developmental disability during the COVID-19 pandemic. There are no right or wrong answers, we are interested in your opinion.

How will your privacy be protected? Your privacy is protected as this is an anonymous survey. We will not gather any information that could identify you. We will treat our anonymous dataset in a confidential and professional manner.

What are the benefits of taking part in this research study? There are no direct benefits to taking part in this research study, however, your data will help provide a picture of the experiences of people with intellectual and developmental disabilities and their caregivers during a pandemic. We hope this information will help shape guidelines for the future.

What are the risks of taking part in this research study? We are aware that the topic of a pandemic is distressing. If you are in distress and feel that you would like to talk to someone about any problems you are having — either as a family member or caregiver/support staff, there are 4 agencies that can offer some help.  

If you are concerned about this study, you can contact me at the email address below.

Click here to take the survey
https://tinyurl.com/COVID19IDD

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