Quality of life among parents of children with visual impairment: A literature review.
No shared yardstick exists for parent QoL in visual impairment, but an 8-week mindfulness program from IDD work can cut stress right now.
01Research in Context
What this study did
Godoy-Giménez et al. (2018) read 37 papers about parents of kids with visual impairment.
They asked: how do researchers measure these parents’ quality of life?
They counted every tool and theme they found, but did not run new interviews.
What they found
No team uses the same survey. Most create their own questions on the spot.
Almost every study reports heavy psychosocial stress: worry, sadness, fatigue.
No gold-standard parent QoL tool exists for visual impairment.
How this fits with other research
Yang et al. (2025) give a fix: an 8-week mindfulness class reliably cuts stress, depression, and anxiety for parents of kids with IDD.
Tavassoli et al. (2012) widen the lens: when you ask siblings, nine themes like “private time” pop out, showing the whole family feels QoL differently.
Mercier et al. (2025) echo the mess: in IDD, most “emotional well-being” scales are really QoL tools with only a few true feeling items.
Together the four papers shout the same warning—current measures are homemade and weak.
Why it matters
You can’t track parent progress if every study uses a different yardstick. Borrow the 8-week mindfulness plan from Yang et al. (2025) while you press for a common QoL tool. Start with a short parent stress scale today, but keep your data simple so future reviews can lump it together.
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02At a glance
03Original abstract
AIMS: To describe the experience of parents caregiving children with visual impairment (VI), to determine how their quality of life (QoL) is assessed, and to summarize QoL indicators through a review of the literature. METHODS: A thematic search through PubMed, PsycINFO, ProQuest and ERIC databases was performed of articles published in English in peer-reviewed journals between 1996 and 2016. Publications were included if they referred to both children or adolescents with VI and their parents, or the family context. The complete selection process disclosed 37 papers suitable for review. RESULTS: Researchers mainly used ad hoc interviews and questionnaires to investigate this topic. Two specific tools, the CarCGQoL (congenital glaucoma) and the OTI (congenital cataract), were identified. Most of the information collected referred to the parents' opinion concerning professional services, their needs and worries, the impact of VI on their emotional well-being and the strategies to assist parents to cope and adjust to the situation. CONCLUSIONS: The experience of caring for a child with VI is mainly influenced by psychosocial factors. Information and guidance to understand the child's visual condition are insufficient, and the available resources reinforce concerns of caregivers regarding the child's opportunities, expressed as negative emotional reactions.
Research in developmental disabilities, 2018 · doi:10.1016/j.ridd.2018.08.013