Enhancing quality of life: Insights from a family with inherited cases of blindness.
Four clear quality-of-life themes from one blind family give you a ready-made assessment guide.
01Research in Context
What this study did
Researchers spent time with one family. Three adults in the family were born blind.
They asked questions and watched daily life. They wanted to learn what helps or hurts quality of life.
No ABA program was tested. The study only describes lived experience.
What they found
Four big themes came up again and again.
First, moving around safely. Second, getting information like news or menus. Third, finding and keeping jobs. Fourth, feeling part of the community.
Each theme shows clear barriers and supports you can see in real life.
How this fits with other research
Van der Molen et al. (2010) used the same kind of interviews with adults who have Down syndrome. Both studies list support from others as a top need.
Anonymous (2023) looked at seventy guidelines for rare disorders. They found most guidelines skip how to actually help people. The new case study fills that gap with real-life detail.
Lee et al. (2016) measured quality of life in kids with ADHD using numbers. The new study adds rich stories that numbers alone miss.
Andrews et al. (2024) tested a short parent-training program. Their work shows we can act on quality-of-life themes once we know them.
Why it matters
You can use these four themes as a quick checklist when you serve adults born blind. Ask about each theme during intake. Then build goals around the missing supports. This turns a family story into a practical tool.
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02At a glance
03Original abstract
Improving quality of life (QoL) for individuals with blindness and visual impairment (BVI) is integral to encouraging their active participation in society, thereby promoting positive social change and creating a more promising future. This qualitative study adopts an intrinsic case study design to explore a Saudi family comprising five highly educated members (one male and four females) who have inherited blindness. They live with their sighted parents and two siblings in the same house in Riyadh, the capital city of Saudi Arabia, and are professionally active as freelancers, advertisers, teachers, and postgraduate students. This approach was chosen to gain an in-depth understanding of the lived experiences of participants who are blind from birth (BfB), focusing on key factors that impact their QoL. Data were collected using a triangulated methodology, including in-depth semi-structured interviews, live recordings, and analysis of artefacts. Theoretical coding analysis revealed four main themes representing factors that impact QoL: (a) life orientation and mobility, (b) information accessibility, (c) employment opportunities, and (d) loneliness and social isolation. These themes encompassed 15 subthemes and 57 individual codes. Findings indicated that participants who are BfB demonstrate strong adaptive skills, digital independence, and psychological resilience, yet continue to confront barriers related to environmental accessibility, assistive technology, and workplace inclusion. A 3 × 4 conceptual model was developed to illustrate the factors influencing the QoL of BfB individuals. The study concludes by recommending solutions that promote the role of education and implementation to enhance QoL for all individuals with BVI.
Research in developmental disabilities, 2025 · doi:10.1016/j.ridd.2025.105159