Quality of life of caregivers of children with visual impairment: A qualitative approach.
Parents of children with visual impairment face daily psychological strain that seeps into every life domain.
01Research in Context
What this study did
Lupón et al. (2023) talked with Catalan parents who raise children with visual impairment.
They used open interviews to learn how caregiving affects quality of life.
Parents spoke about feelings, money, work, friends, and daily tasks.
What they found
Every parent told the same story: life is hard in every area.
They feel tired, lonely, and worried most days.
Small helps—like a friend who listens or learning new skills—gave short breaks from stress.
How this fits with other research
Hutchins et al. (2020) saw the same drop in caregiver health using a survey.
Their numbers match Marta’s stories: both show heavy caregiver burden.
Waqar et al. (2026) also used parent talks, but in rural Thailand.
They list five needs—health, welfare, school, social, and info—echoing Marta’s themes.
Winburn et al. (2014) pooled 17 papers on parents of people with intellectual disability.
Sex talk worries came up, yet the core stress mirrors what visual-impairment parents feel.
Why it matters
You now know parents of kids with visual impairment walk around with chronic stress.
Add a five-minute caregiver check to every session. Ask: sleep, mood, support, info needs.
Then link them to one concrete resource—respite list, peer group, or low-vision workshop.
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02At a glance
03Original abstract
BACKGROUND: Receiving a diagnosis of a child with untreatable visual impairment (VI) may have a negative impact on parents and caregivers, and affect their quality of life (QoL). AIMS: To use a qualitative research approach to determine the impact that caregiving a child with a VI has on the QoL of caregivers in Catalonia (Spain). METHODS: An observational study was designed in which nine parents of children with VI (6 mothers) were recruited following an intentional sampling scheme. In-depth interviews were conducted, and a thematic analysis was performed to identify main themes and subthemes. The QoL domains defined in the questionnaire WHOQoL-BREF guided data interpretation. RESULTS: An overarching theme was defined (the weight on one's shoulders), as well as two main themes (obstacles race and emotional impact) and seven subthemes. QoL was negatively affected by a general lack of knowledge and understanding regarding VI in children and its implications for children and caregivers, whereas social support, gaining knowledge, or cognitive reappraisal had a positive effect. CONCLUSIONS: Caregiving for children with VI affects all QoL domains, resulting in persistent psychological distress. Both administrations and health care providers are encouraged to develop strategies to assist caregivers in their demanding roles.
Research in developmental disabilities, 2023 · doi:10.1016/j.ridd.2023.104538