The experiences and attitudes of family caregivers of adults with intellectual and developmental disabilities at different timepoints in the COVID-19 pandemic

BACKGROUND: The COVID-19 pandemic has resulted in increased pressures for family caregivers of adults with intellectual and developmental disabilities (IDD). However, little is known about how their attitudes and perceptions have changed over the course of the pandemic. OBJECTIVE: To compare the COVID-19 experiences and attitudes of two groups of family caregivers, reported at different timepoints in the pandemic: prior to vaccine availability and after. METHODS: As part of a larger research study, family caregivers of adults with IDD from across Canada completed surveys on their COVID-19 experiences. Survey questions included responses about access to supports, stressors, self-efficacy, mental wellbeing, and pandemic impacts on their family member with IDD. Respondents were assigned to either of two groups based on the time of questionnaire completion: late 2020/early 2021 for Group 1 and mid 2022 for Group 2. Descriptive statistics and analysis between groups were reported. RESULTS: Despite being surveyed at different timepoints in the pandemic, both groups indicated concerns regarding lack of professional support and resources, lack of programming, and experiences of loneliness for their family members. However, Group 2 reported greater self-efficacy dealing with COVID-19 related challenges and greater overall mental wellbeing, compared to Group 1. Group 2 caregivers, after which vaccines were widely available in Canada, were largely vaccinated (96.4%). CONCLUSIONS: Despite the COVID-19 pandemic persisting for over two years, family caregivers of adults with IDD reported facing the same challenges as families who reported on their experiences a year prior. Notwithstanding, family caregivers surveyed later in the pandemic described a greater sense of self-efficacy and mental wellbeing.