Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills

Abstract Background Recruitment challenges, the use of complex language, and reluctance toward research are factors that make people with low literacy skills (LL skills), such as people with mild intellectual disability (MID), an underrepresented group in public health monitoring questionnaires. As...

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Main Authors: Meike C.M. Theunissen, Monique C.J. Koks-Leensen, Jane van Geenen, Geraline L. Leusink, Jenneken Naaldenberg, Kirsten E. Bevelander
Format: Article
Language:English
Published: BMC 2025-07-01
Series:International Journal for Equity in Health
Online Access:https://doi.org/10.1186/s12939-025-02578-0
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author Meike C.M. Theunissen
Monique C.J. Koks-Leensen
Jane van Geenen
Geraline L. Leusink
Jenneken Naaldenberg
Kirsten E. Bevelander
author_facet Meike C.M. Theunissen
Monique C.J. Koks-Leensen
Jane van Geenen
Geraline L. Leusink
Jenneken Naaldenberg
Kirsten E. Bevelander
author_sort Meike C.M. Theunissen
collection DOAJ
description Abstract Background Recruitment challenges, the use of complex language, and reluctance toward research are factors that make people with low literacy skills (LL skills), such as people with mild intellectual disability (MID), an underrepresented group in public health monitoring questionnaires. As a result, little is known about the health status and needs of people with MID and/or LL skills, despite their higher health risks and greater support needs, reinforcing health inequalities. Therefore, this case study evaluates the development and implementation of an accessible online COVID-19 health monitoring survey (CHM) to gain insights into what is needed to engage these subpopulations in public health monitoring and promote equitable participation. Methods The CHM project was systematically analyzed using 319 documents related to the CHM development and implementation process. A semi-structured coding approach was used to identify strategies used to reach the target groups and elements influencing accessibility of the monitoring survey. Results Three key strategies to reach people with MID and/or LL skills were identified: stakeholder involvement, emphasizing the benefits of participation, and reducing barriers and reluctance to participate. Additionally, the inclusive development process played an essential role in improving accessibility and led to content, cognitive, and usability adjustments. Conclusions Our study illustrates that engaging people with MID and/or LL skills in public health monitoring relies on committed stakeholders who facilitate access to these groups and the involvement of experts by experience and co-researchers to align the monitoring survey with their experiences and abilities. These tailored methods and innovative recruitment strategies offer an opportunity for accessible and representative public health monitoring. Sustaining such monitoring approach could inform health policies that better reflect the needs of underrepresented groups and promote health equity.
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spelling doaj-art-d34d6cbdb31547eab3f2189162f90ca52025-08-20T03:46:07ZengBMCInternational Journal for Equity in Health1475-92762025-07-0124111510.1186/s12939-025-02578-0Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skillsMeike C.M. Theunissen0Monique C.J. Koks-Leensen1Jane van Geenen2Geraline L. Leusink3Jenneken Naaldenberg4Kirsten E. Bevelander5Department of Primary and Community Care, Radboud university medical centerDepartment of Primary and Community Care, Radboud university medical centerDepartment of Primary and Community Care, Radboud university medical centerDepartment of Primary and Community Care, Radboud university medical centerDepartment of Primary and Community Care, Radboud university medical centerDepartment of Primary and Community Care, Radboud university medical centerAbstract Background Recruitment challenges, the use of complex language, and reluctance toward research are factors that make people with low literacy skills (LL skills), such as people with mild intellectual disability (MID), an underrepresented group in public health monitoring questionnaires. As a result, little is known about the health status and needs of people with MID and/or LL skills, despite their higher health risks and greater support needs, reinforcing health inequalities. Therefore, this case study evaluates the development and implementation of an accessible online COVID-19 health monitoring survey (CHM) to gain insights into what is needed to engage these subpopulations in public health monitoring and promote equitable participation. Methods The CHM project was systematically analyzed using 319 documents related to the CHM development and implementation process. A semi-structured coding approach was used to identify strategies used to reach the target groups and elements influencing accessibility of the monitoring survey. Results Three key strategies to reach people with MID and/or LL skills were identified: stakeholder involvement, emphasizing the benefits of participation, and reducing barriers and reluctance to participate. Additionally, the inclusive development process played an essential role in improving accessibility and led to content, cognitive, and usability adjustments. Conclusions Our study illustrates that engaging people with MID and/or LL skills in public health monitoring relies on committed stakeholders who facilitate access to these groups and the involvement of experts by experience and co-researchers to align the monitoring survey with their experiences and abilities. These tailored methods and innovative recruitment strategies offer an opportunity for accessible and representative public health monitoring. Sustaining such monitoring approach could inform health policies that better reflect the needs of underrepresented groups and promote health equity.https://doi.org/10.1186/s12939-025-02578-0
spellingShingle Meike C.M. Theunissen
Monique C.J. Koks-Leensen
Jane van Geenen
Geraline L. Leusink
Jenneken Naaldenberg
Kirsten E. Bevelander
Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills
International Journal for Equity in Health
title Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills
title_full Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills
title_fullStr Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills
title_full_unstemmed Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills
title_short Engaging underrepresented populations in public health monitoring: strategies for people with mild intellectual disability or low literacy skills
title_sort engaging underrepresented populations in public health monitoring strategies for people with mild intellectual disability or low literacy skills
url https://doi.org/10.1186/s12939-025-02578-0
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