Available online 6 April 2023, 101472

Author links open overlay panel, , , AbstractBackground

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.

Section snippetsFunding

This study was funded by the Canadian Institute of Health Research (Operating grant FRN #EG2 179428)

Methods

The current study is a secondary-analysis as part of a larger intervention-based research study investigating the impact of a six-week virtual course designed to help family caregivers address the ongoing health needs of their loved ones during COVID-1919. Pre-course survey responses, prior to any intervention, were collected from respondents from different iterations of the course at different timepoints in the pandemic. The first round of the course was delivered in 2020/2021, with pre-course

Participants

Demographic and descriptive statistics, stratified by group, are summarized in Table 1. The two groups were quite similar demographically. The average age of participants was 57.0 years old (SD=11.4). The majority of participants identified as women (n=182, 91.9%) and as mothers of adults with IDD (n=156, 78.8%). The average age of the participants’ family members with IDD was 30.1 years old (SD=11.4) and the majority were men (n=127, 64.1%). Most family members with IDD lived with their family

Discussion

This study investigated how perspectives of family caregivers of adults with IDD contacted earlier in the pandemic differed from perspectives of a similar group of families contacted in 2022. In many ways the groups surveyed in 2020/2021 and 2022 were similar. Both groups reported major concerns regarding professional support and resources, lack of programming, and loneliness. However, Group 2, which was overwhelmingly vaccinated, reported they were less fearful of infection, had greater

Conclusion

This study found that family caregivers of adults with IDD continue to struggle with many of the same challenges faced by families at the start of the pandemic, indicating that their needs continue to be inadequately addressed. Despite families having unmet needs later in the pandemic, they report better mental wellbeing and self-efficacy than families who reported similar levels of unmet needs earlier on. As the pandemic continues to evolve, it is crucial to continue investigating the

Conflict of Interest Statement

The authors have no conflict of interests to declare.

References (31)P.A. Harris et al.The REDCap consortium: Building an international community of software platform partners

Journal of biomedical informatics

(2019)

P.A. Harris et al.Research electronic data capture (REDCap)—a metadata-driven methodology and workflow process for providing translational research informatics support

Journal of biomedical informatics

(2009)

P. Navas et al.Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective

Research in Developmental Disabilities

(2021)

S. Dhiman et al.Impact of COVID-19 outbreak on mental health and perceived strain among caregivers tending children with special needs

Research in Developmental Disabilities

(2020)

P. Navas et al.Supports for people with intellectual and developmental disabilities during the COVID-19 pandemic from their own perspective

Research in Developmental Disabilities

(2021)

J.K. Lake et al.The wellbeing and mental health care experiences of adults with intellectual and developmental disabilities during COVID-19

Journal of Mental Health Research in Intellectual Disabilities

(2021)

N. Hughes et al.The experience of the COVID-19 pandemic in a UK learning disability service: lost in a sea of ever changing variables–a perspective

International Journal of Developmental Disabilities

(2022)

Flynn, S., Hayden, N., Clarke, L., Caton, S., Hatton, C., Hastings, R., ... & Todd, S. (2021). Coronavirus and People...K. Courtenay et al.COVID-19 and people with intellectual disability: impacts of a pandemic

Irish Journal of Psychological Medicine

(2020)

Y. Lunsky et al.Predictors of worker mental health in intellectual disability services during COVID‐19

Journal of Applied Research in Intellectual Disabilities

(2021)

Lee, V., Albaum, C., Tablon Modica, P., Ahmad, F., Gorter, J. W., Khanlou, N., ... & Weiss, J. A. (2020). Impact of...J. Manning et al.Perceptions of families of individuals with autism spectrum disorder during the COVID-19 crisis

Journal of autism and developmental disorders

(2021)

R. Ueda et al.The quality of life of children with neurodevelopmental disorders and their parents during the Coronavirus disease 19 emergency in Japan

Scientific reports

(2021)

C. Linehan et al.COVID-19 IDD: Findings from a global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities (IDD) and their caregivers

HRB open research

(2022)

P. Willner et al.Effect of the COVID‐19 pandemic on the mental health of carers of people with intellectual disabilities

Journal of Applied Research in Intellectual Disabilities

(2020)

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