Bilateral childhood visual impairment: child and parent concerns

Area of Science:

• Pediatric ophthalmology
• Quality of life research
• Patient-reported outcomes

Background:

• Bilateral visual impairment significantly affects children's lives.
• Understanding patient and parent perspectives is crucial for effective support.

Purpose of the Study:

• Identify health-related quality of life and visual function concerns in children with bilateral visual impairment.
• Document concerns experienced by children and their parents.
• Inform the development of patient-derived questionnaires.

Main Methods:

• Prospective enrollment of 37 children (<16 years) with visual impairment and their parents.
• Semistructured individual interviews with 16 children (5-15 years) and 37 parents (0-15 years).
• Qualitative analysis of interview transcripts using NVivo software to identify themes and frequencies of concerns.

Main Results:

• Children's concerns included visual function (81% children, 89% parents), treatment, emotions, social impact, physical discomfort, and worry.
• Parents' concerns focused on worry (100%), adjustment (89%), treatment, emotions, and family impact (46%).
• Significant overlap in concerns between children and parents regarding visual function and emotional well-being.

Conclusions:

• Bilateral visual impairment presents a broad range of functional, emotional, social, and physical concerns for children and their families.
• Patient and parent interviews provide valuable insights into the lived experience of visual impairment.
• Findings will guide the creation of new tools to measure the impact of visual impairment on daily life.