Quality of life, functioning and participation of children and adolescents with visual impairment: A scoping review.
Visual impairment lowers quality of life and participation across childhood, so BCBAs need to measure these domains with validated tools.
01Research in Context
What this study did
Lanza et al. (2024) searched 69 papers about kids and teens with visual impairment. They wanted to know how blindness or low vision affects quality of life, daily skills, and joining activities.
What they found
Every study showed the same trend: visual impairment drags down quality of life and participation. The heavier the vision loss, the bigger the impact. Older kids felt it more than younger ones.
How this fits with other research
Cramm et al. (2009) looked at adults with both intellectual disability and visual impairment. They found vision loss adds extra damage on top of ID, matching the child pattern Martina saw.
Hanzen et al. (2017) asked 53 experts to define participation for adults with visual and profound ID. Their seven-cluster map gives practitioners a ready-made checklist that lines up with the child-focused tools Martina cataloged.
Maciver et al. (2020) built a short teacher scale for school participation. Martina’s review says we need good measures; Donald hands us one that takes 11 minutes and already has psychometric support.
Why it matters
If you serve a child with visual impairment, screen quality of life and participation at intake and yearly. Pick validated child and caregiver tools from Martina’s list, or grab the School Participation Questionnaire for teacher input. Track the data to show parents and funders why vision services must stay in the plan.
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02At a glance
03Original abstract
BACKGROUND: Vision has a key role in children's neuromotor, cognitive and social development. Children with visual impairment attain developmental milestones at later stages and are at higher risk of developing psychological disorders and social withdrawn. AIMS: We performed a scoping review to summarize the mostly used instruments assessing the impact of visual impairment on quality of life, functioning and participation of children and adolescents. In addition, the main findings of the included studies are discussed. METHODS AND PROCEDURES: We searched for papers assessing quality of life, functioning and participation of children and adolescents with visual impairment from 0 to 18 years old conducted between 2000 and 2023. OUTCOMES AND RESULTS: In total, 69 studies met the inclusion criteria and were included in the review. Child self-report, caregivers-proxy and self-report questionnaires as well as interviews were used. The results showed that quality of life, functioning and participation are significantly reduced in children and adolescents with visual impairment, and that the impact depends on different factors (e.g., severity of the impairment, age). CONCLUSIONS AND IMPLICATIONS: Considering the significant impact of visual impairment on quality of life, functioning and participation on this population, it is fundamental to develop integrated and multi-dimensional assessment programs that evaluate the impact of visual impairment on those dimensions considering different contexts of life (e.g., family, school, leisure time). WHAT THIS PAPER ADDS?: The present review aims to give an overview of what is known about the impact of visual impairment on quality of life, functioning and participation of children and adolescents. We assumed a biopsychosocial perspective which, in line with the definition of health by the International Classification of Functioning, Disability and Health (WHO, 2001), considered how body functions and structures, functioning, participation and environmental factors dynamically interact to define the health, or the disease, status of a person at a certain moment of life. We reported the most used instruments for the assessment of quality of life, participation, and functioning, with a specific interest on Patient-Reported Outcome Measures and self-report measures. By reporting the different instruments used, we gave a broad overview about the available tools that can be used in clinical as well as in research field to assess quality of life, functioning and participation in this population. Additionally, the review of the existing literature allowed us to demonstrate that those dimensions are negatively impacted by visual impairment and thus they should be considered in the assessment programs. Specifically, there is the need to provide more integrated assessment programs that investigate the impact of visual impairment on children and adolescents' social and emotional wellbeing, everyday functioning and social relationship, considering their subjective experience together with the one of caregivers, teachers, health care professionals, and other relevant adults involved in their life. Additionally, it is essential to plan and implement multidimensional assessment programs that consider how all areas of life are differently impacted by visual impairment.
Research in developmental disabilities, 2024 · doi:10.1016/j.ridd.2024.104772