Quality of life, satisfaction with care, and the experiences of adults with intellectual and developmental disabilities before and during COVID-19

Emily J Hickey; Allison Caudill; Hannah Laufenberg; Lynn Hrabik; Leann DaWalt; Karla K Ausderau

doi:10.1016/j.dhjo.2023.101545

Quality of life, satisfaction with care, and the experiences of adults with intellectual and developmental disabilities before and during COVID-19

Disabil Health J. 2024 Apr;17(2):101545. doi: 10.1016/j.dhjo.2023.101545. Epub 2023 Nov 14.

Authors

Emily J Hickey¹, Allison Caudill², Hannah Laufenberg², Lynn Hrabik³, Leann DaWalt³, Karla K Ausderau⁴

Affiliations

¹ Waisman Center, University of Wisconsin-Madison, University of Wisconsin-Madison, Madison, WI, USA. Electronic address: ejhickey2@wisc.edu.
² Department of Kinesiology, Occupational Therapy Program, University of Wisconsin-Madison, Madison, WI, USA.
³ Waisman Center, University of Wisconsin-Madison, Madison, WI, USA.
⁴ Department of Kinesiology, Occupational Therapy Program, University of Wisconsin-Madison, Madison, WI, USA; Waisman Center, University of Wisconsin-Madison, Madison, WI, USA.

PMID: 37980230
PMCID: PMC10999343 (available on 2025-04-01)
DOI: 10.1016/j.dhjo.2023.101545

Abstract

Background: Adults with intellectual and developmental disabilities (IDD) experienced significant disruptions in their access to health care, support services, and essential daily activities such as work, leisure, and routine daily care during COVID-19.

Objective: The purpose of this study was to describe overall experiences related to COVID-19 among adults with IDD, including the vaccination process, quality of life (QoL), and service satisfaction before and during the pandemic.

Methods: A longitudinal statewide survey of adults with IDD receiving long-term care support using a combination of self- and care partner report was completed prior to (2017; n = 331) and during (2021; n = 206) the pandemic.

Results: Qualitative results identified specific vaccine barriers, vaccine decision influencers, and general experiences during COVID-19 for adults with IDD. The importance of support staff, vaccine availability, disruption in daily activities, social context, and mental health implications were noted in responses to all three topics. Quantitative results showed lower QoL during COVID-19 (M = 2.99 vs. 3.14, p = .028); however, when reporter (self vs. care partner) and age were added to the model, differences between pre-vs. during-COVID were no longer significant. No significant differences in satisfaction of services were noted pre-vs. during-COVID-19. Ninety-six percent of respondents reported access to the vaccine, and 16 % experienced barriers getting the vaccine. QoL was associated with receiving the COVID-19 vaccine (r = 0.15, p = .036), level of agreement that the vaccine is safe (r = 0.17, p = .024), and level of agreement that getting the vaccine will help protect other vulnerable people in the community (r = .25, p = .001). Level of satisfaction with quality of services was also associated with level of agreement that the vaccine is safe (r = 0.15, p = .048).

Conclusions: Overall, a better understanding of service continuation, support practices, and experiences related to COVID-19 will prepare us for future environmental and health crises by identifying areas for improvement, intervention, and policy change to meet the ongoing needs of adults with IDD.

Keywords: COVID-19; Quality of life; Satisfaction; Self-report; Service.

MeSH terms

Adult
COVID-19 Vaccines
COVID-19*
Child
Developmental Disabilities / psychology
Disabled Persons* / psychology
Humans
Intellectual Disability* / complications
Intellectual Disability* / psychology
Quality of Life

Substances

COVID-19 Vaccines

Grants and funding

P50 HD105353/HD/NICHD NIH HHS/United States