Study title

Caring and waving: longitudinal study on the consequences of restrictive COVID-19 measures for relatives of people with intellectual disabilities and their need for support RESEARCH QUESTION In this longitudinal study we examine the impact of the restrictive measures in residential care and in the home situation due to COVID-19 on the quality of life of relatives of people with intellectual disabilities and the support that these relatives need. The goal is to provide insight into bottlenecks and to provide them with better support. The insights obtained contribute to the development and safeguard of future policy that will relieve the task of family members and increase their quality of life. URGENCY Relatives are vulnerable in the COVID-19 pandemic. During the crisis they sometimes started taking care of their family member at home. Others could no longer visit them. Relatives provide extensive and long-term informal care and make an important social contribution. The results have added value for relatives, people with intellectual disabilities, professionals, policy makers and researchers. The infrastructure is available for future monitoring. HYPOTHESIS COVID-19 measures entail risk factors for the quality of life of relatives, such as extensive and complex care tasks and a decline in social support. PLAN OF ACTION We will conduct three measurements among nearly 400 relatives spread over 2020 and 2021 with a questionnaire and interviews. The measurements are in line with Nivel research from 2019 into the quality of life of relatives and with a pilot measurement in June 2020 into COVID-19. The first results will be known at the end of 2020 and the final conclusions in 2021. A publication for policymakers and professionals and a newsletter for relatives will be published for each measurement. We disseminate outcomes via social media for stakeholders, such as health care providers and the government. Next to these stakeholders, experience experts are cooperating...