Patient- and parent-reported outcome measures of developmental adaptive abilities in visually impaired children: The Visual Impairment Developmental Autonomy (VIDA) scale.
VIDA is a ready-to-validate 102-item scale that lets visually impaired youth and parents co-rate daily autonomy skills.
01Research in Context
What this study did
Grumi et al. (2022) built a new survey for kids who are blind or have low vision. They call it the VIDA scale.
Parents and kids co-wrote 102 items that ask about five life skills areas. The team used a Delphi process to keep only the best items.
What they found
The paper only shows how they built the tool. Real test data from 300 families is still coming.
The scale is ready to ship and can be given online or on paper.
How this fits with other research
Lanza et al. (2024) looked at 69 studies and found vision loss lowers quality of life. VIDA fills a gap they spotted: a quick, child-friendly measure of daily skills.
Sasson et al. (2022) also let teens with intellectual disability co-design their survey. Both papers prove kids can help write their own questions when you use short sentences and pictures.
Reus et al. (2013) tweaked the Bayley-III for toddlers with vision or motor issues. VIDA follows the same idea—remove visual bias—but focuses on older kids and daily living skills.
Why it matters
If you serve clients who are blind or have low vision, you now have a fresh tool that asks about dressing, cooking, moving, social, and study skills from both the child and parent view. Track these skills before and after your ABA program to show real-world change, not just table-top gains.
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02At a glance
03Original abstract
In the pediatric context, parents' and patients' engagement in the care process is strongly recommended and could be pursued using patient-reported outcome measures (PROMs), which therefore become useful for planning and monitoring treatments. Nevertheless, few data are available from families of children with neurodevelopmental disorders such as visual impairment (VI). The Visual Impairment Developmental Autonomy (VIDA) project aims to develop and validate a patient- and parent-reported tool to measure the most relevant aspects concerning everyday adaptive abilities in children and adolescents with visual impairment: the VIDA scale. The present paper illustrates the Delphi process of item generation engaging parents and patients and presents a protocol for the validation of this new co-designed tool in an Italian visually impaired pediatric population. Twenty-three families and five adolescents provided a list of 192 items and assessed their relevance. Items were categorized in 5 areas of adaptive abilities (i.e., table manners, clothing, personal hygiene, orientation and mobility, and socio-affectivity) and into three age ranges based on the patient's age. The final 102-item Vida Scale will be administered to a minimum of 300 visually impaired children together with measures of quality of life and child adjustment to investigate its psychometric properties.
Research in developmental disabilities, 2022 · doi:10.1016/j.ridd.2022.104331