The experiences and attitudes of family caregivers of adults with intellectual and developmental disabilities throughout 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 throughout the pandemic. Objective To investigate how family caregivers perceived their COVID-19 experiences and attitudes at two 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.

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.

'More together than apart': The evaluation of a virtual course to improve mental health and well-being of adults with intellectual disabilities during the COVID-19 pandemic.

BACKGROUND: To address the growing concerns over poor mental health experienced by adults with intellectual disabilities due to the COVID-19 pandemic, a national virtual mental health course was delivered and evaluated. METHODS: This mixed methods study utilized both qualitative and quantitative assessments. Participants were 27 adults with intellectual disabilities who participated in the 6-week course. Participants completed measures of self-efficacy and well-being at three time points and qualitative satisfaction measures at post and follow-up. RESULTS: Attendance was high and the course was feasible and acceptable to participants. Positive changes related to mental health self-efficacy were detected (p = .01), though mental well-being did not improve. CONCLUSION: The study provided evidence for the feasibility and value of the course for this population. Future research should examine how virtual courses could support the population in terms of pandemic recovery and how courses may work for individuals who are less independent.