An Accessible Web-Based Survey to Monitor the Mental Health of People With Mild Intellectual Disability or Low Literacy Skills During the COVID-19 Pandemic: Comparative Data Analysis

Abstract

Background The COVID-19 pandemic and related control measures affected the mental health of all populations. Particular subgroups are underrepresented in mainstream surveys because they are hard to reach, and study measurements are not adapted to their skills. These subgroups include people with lower cognitive and literacy skills, such as people with mild intellectual disability (MID), who were considered vulnerable during the COVID-19 pandemic given their low socioeconomic status, small social networks, increased risks of health problems, and difficulties understanding health-related information. Objective This study examines the impact of the COVID-19 pandemic on mental health among people with MID or low literacy skills compared with those predominantly represented in national surveys. Methods A repeated cross-sectional study of people with MID or low literacy skills and a general population sample was conducted in the Netherlands. An easy-read web-based survey was co-designed with, and tested among, people with MID or low literacy skills and conducted in 3 rounds within 1 year of the COVID-19 pandemic (T1: November to December 2020, T2: March to April 2021, and T3: September to October 2021). The survey contained questions about demographics and 6 aspects of mental health: feeling happy, feeling energized, feeling stressed, worry, feeling lonely, and sleeping problems. Results Our adapted survey and recruitment procedure enabled 1059 persons with MID or low literacy skills to participate (T1: n=412, 38.9%; T2: n=351, 33.1%; and T3: n=296, 28%). They were significantly younger, had a lower level of education, and more often than not were born outside the Netherlands compared to the general population sample (P<.001). Approximately half of them (604/1059, 57.03%) received professional care. They displayed poorer mental health scores than the general population sample. The percentages of people with MID or low literacy skills who reported more negative feelings in T1 ranged from 20.6% (85/412) reporting feeling lonely often or almost always to 57.8% (238/412) reporting feeling happy almost never or sometimes. The general population sample’s percentages were 5.4% (160/2930) and 32.2% (941/2918), respectively. Although scores improved over time in both populations, the disproportional effects remained. Conclusions General COVID-19–related restrictions for the entire Dutch population affected people with MID or low literacy skills more negatively than the general population. Our study underscores the relevance of including these subpopulations in public health research because they are often overlooked in regular health data. An accessible web-based survey particularly targeted at this population enabled us to do so, and we reached a group of respondents significantly different from regular survey participants. This survey’s results provided insights into the health of people with MID or low literacy skills and gained knowledge to be used by care organizations and policy makers to reduce health disparities during a pandemic and in general.