Evaluation of a co-designed Health Check-in for adults with intellectual and developmental disabilities and family caregivers to support pandemic recovery

BackgroundThe COVID-19 pandemic has brought about disruptions in healthcare for adults with intellectual and developmental disabilities. There is a need to explore ways to promote proactive healthcare and better prepare individuals for healthcare encounters.MethodsA co-designed tool, the COVID Check-in Tool, was introduced as part of a virtual health education programme to encourage proactive healthcare. Implementation of this Health Check-in was evaluated with 36 adults with intellectual and developmental disabilities and 96 family caregivers who completed the programme using surveys, structured interviews and focus groups.FindingsForty-four percent of participants engaged in the Health Check-in process, resulting in many reported benefits for those who participated. However, there were also barriers to initiating the Check-in, along with challenges using the COVID Check-in Tool, according to both the adults with disabilities who were interviewed and the family caregivers.ConclusionsThe study underscores the importance of considering ways to integrate tools into routine healthcare practices, to facilitate improved healthcare delivery for people with intellectual and developmental disabilities during pandemic recovery efforts. As well, involving people with lived experience in the development and implementation of healthcare resources is critical. Our team worked together to make a tool that would help people with intellectual and developmental disabilities talk to their doctor about health problems after not seeing them a lot because of the pandemic. We called this tool the 'COVID Check-in'. Then people from our team taught online health courses about how to use the COVID Check-in Tool and other health topics. After the courses were over, we asked 36 adults with intellectual and developmental disabilities and 96 family caregivers if they had a Health Check-in with their doctor and how it went, or what problems they had with it. Almost half of the people who took the courses had a Health Check-in and most of the people thought it was helpful. Some people did not do it or did it but had problems with it. We end the paper with some ideas of how to make it easier to check in with the doctor and why it is important to include people with disabilities and family caregivers when making healthcare tools.