Introduction:
We are excited to announce the publication of a recent paper titled, “Defining and measuring emotional well-being in intellectual and developmental disabilities: A scoping review,” which was led by Dr. Alecia Mercier and published in the Research in Developmental Disabilities journal in October 2025. Collaborators included Dr. Jessica Koslouski, Dr. Sandra Chafouleas, and Dr. Sophie Hall from the University of Connecticut. Dr. Caroline G. Richter served as the mentor for the project.
The team of researchers aimed to create a report and collect information on emotional well-being tools used for individuals with intellectual and developmental disabilities. The report included 33 papers with 20 different tools used for reporting emotional well-being.
Why is Emotional Well-Being Important?
While people often think about health as eating healthy and exercising, emotional well-being has been found to be equally important. Emotional well-being is how good a person feels day to day and about life overall. It includes components such as feeling positive emotions, life satisfaction, having sense of meaning or purpose, and ability to pursue goals. Positive emotional well-being is associated with better physical and mental health. The authors of this paper wanted to understand if this was how emotional well-being is being defined for individuals with intellectual and developmental disabilities, and how it is measured. This information can be used in future research to benefit this population.
Key Findings:
The researchers report that based on a previous study, there are many ways to measure emotional well-being in the general population without intellectual and developmental disabilities, with over 135 different tools being widely used. In contrast, the number of tools used to measure emotional well-being in those who have intellectual and developmental disabilities was smaller, with only 20 measures specifically made or adapted for them. The authors found that there are not enough tools available for measuring emotional well-being in children with disabilities, or individuals with severe or profound intellectual disability. Most measures were used with adults and older adults with mild to moderate intellectual disability. Many measures focused on quality of life, and external experiences rather than treating emotional well-being as a distinct, stand-alone construct. Focusing on quality of life takes away from examining internal emotions and experiences in this population. There needs to be a more consistent and better way to measure emotional well-being in children and adolescents with intellectual and developmental disabilities. The lack of tools could create mistakes or bias in research surrounding individuals with intellectual and developmental disabilities.
How Emotional Well-Being Is Measured in People with Intellectual and Developmental Disabilities and Gaps noticed in the research.
The authors looked at many different studies to see the difference in emotional well-being measures used with individuals with intellectual and developmental disabilities:
- Limited Adaptation: Available tools used to measure emotional well-being were made for typically developing individuals and not those with intellectual and developmental disabilities.
- Underrepresentation: Manytools focused on adults with mild to moderate intellectual disability. Less tools were available for children and adolescents and for those with severe intellectual disability.
- Measures may be difficult to understand: Tools often use complex wording or long questions, which can be difficult to understand for individuals with intellectual and developmental disabilities.
- Limited availability: Tools available often included only a small number of items that were related to emotional well-being. Instead, many tools included items related to quality of life, physical well-being, and interpersonal relations
- Informant-report bias: In some of the measures, other people, like caregivers or teachers, answer questions for someone with an intellectual or developmental disability. However, it may not fully reflect the person’s actual emotional experiences, making the data collected less accurate.
Conclusion: Why is this important? What directions can we make in the future of research to support measurement of emotional well-being research in those who have intellectual and developmental disabilities?
Emotional well-being is an important part of human health. Designing better ways to measure emotional well-being in people with intellectual and developmental disabilities is important because it helps researchers understand how people with intellectual and developmental disabilities feel and what we can do to support them. Future research needs to create new tools of emotional well-being that are easy to use regardless of intellectual ability or communication skills. More accurate emotional well-being tools can be used to create better interventions, programs, and tools to assist those with intellectual and developmental disabilities in their daily life.
To read the full published article see below: https://doi.org/10.1016/j.ridd.2025.105115
