An Accessible Web-based Survey to Monitor the Mental Health of People with Mild Intellectual Disabilities and/or Low Literacy Skills during the COVID-19 Pandemic: Comparative Data Analysis.

BACKGROUND: The COVID-19 pandemic and related control measures affected 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), and are 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 examined the impact of the COVID-19 pandemic on mental health among people with MID and/or low literacy skills compared with people who are mainly represented in national surveys.

METHODS: A repeated cross-sectional study of people with MID and/or low literacy skills and a general population sample was conducted in the Netherlands. An easy-read online survey was co-designed with, and tested among, people with MID and/or low literacy skills and conducted in three rounds within one year of the COVID-19 pandemic (T1: November-December 2020, T2: March-April 2021 and T3: September-October 2021). The survey contained questions about demographics and six aspects of mental health; feeling happy, feeling energized, stress, worry, feeling lonely, and sleeping problems.

RESULTS: The web-based survey and adapted recruitment procedure enabled 412 persons with MID and/or low literacy skills to participate in T1, 351 in T2, and 296 in T3. 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. About half of them received professional care. The target group displayed significantly poorer mental health scores than the general population sample. Percentages of people with MID and/or low literacy skills who reported more negative feelings in T1 ranged from 21% that feel lonely (very) often to 58% almost never or only sometimes feeling happy. In the general population sample this was 5% and 33%, respectively. Although scores improved over time in both populations disproportional effects remained.

CONCLUSIONS: General disease control measures for the entire Dutch population affected people with MID and/or low literacy skills more negatively than the general population sample. Our study underscores the relevance of including people with MID and/or low literacy skills in public health research, as 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. Results from this monitor provided insights into the health of people with MID and/or low literacy skills and gained knowledge for care organizations and policymakers to improve health promotion and reduce health disparities, in unexpected events such as a pandemic as well as in general.