title: Seeing it my way: living with childhood onset visual disability.
abstract: BACKGROUND
  Although the significant impact of visual disability in childhood has been widely recognized, children's own perspectives of living with a visual impairment have not been considered. We report the experiences of visually impaired (VI) children and young people aged 10-15 years about growing up with impaired sight.
  
  
  METHODS
  The participants were 32 VI children and young people, aged 10-15 years [visual acuity logarithm of minimum angle of resolution (LogMAR) worse than 0.51] recruited through National Health Service (NHS) paediatric ophthalmology and developmental vision clinics and 11 VI pupils aged 12-17 attending a specialist school for pupils with disabilities. Individual semi-structured interviews with participants captured their experiences of living with a visual impairment. A child-centred interview topic guide was developed from a literature review, observations at ophthalmology clinics, consultation with health and education professionals working with VI children and young people, and interviews and a focus group with VI pupils from the specialist school. Collaborative qualitative thematic analysis by three researchers identified emergent themes. NVivo software was used for coding the data.
  
  
  RESULTS
  Analysis identified six themes concerning living with a visual impairment: (i) social relationships, participation and acceptance; (ii) independence and autonomy; (iii) psychological and emotional well-being; (iv) aspirations and concerns about the future; (v) functioning - home, school and leisure; and (vi) treatment of eye condition. Key issues included: the importance of family and peer support; balancing independence, support and safety; the emotional burden and adjustment of living with a disability; concerns about education and job prospects in the future; functional restrictions and limitations; and ongoing management of the eye condition.
  
  
  CONCLUSIONS
  The findings offer insights into the complex realities of living with visual impairment. They provide the basis for development of patient-reported outcome measures. They can also serve to help enrich the understanding of health professionals working with VI children and young people, potentially enabling them to better support them.
authors.affiliation: Population, Policy and Practice Programme, Lifecourse Epidemiology and Biostatistics Section, UCL Institute of Child Health, London, UK.
authors.forename: V
authors.initials: V
authors.lastname: Tadić
authors.forename: G Lewando
authors.initials: GL
authors.lastname: Hundt
authors.forename: S
authors.initials: S
authors.lastname: Keeley
authors.forename: J S
authors.initials: JS
authors.lastname: Rahi
mesh_terms: D000203:Activities of Daily Living; D000293:Adolescent; D017668:Age of Onset; D001294:Attitude to Health; D002648:Child; D019988:Children with Disabilities / Q000523:psychology / Q000534:rehabilitation*; D005260:Female; D006801:Humans; D057187:Independent Living; D007398:Interpersonal Relations; D008131:London; D008297:Male; D026684:Personal Autonomy; D014786:Vision Disorders / Q000503:physiopathology / Q000523:psychology / Q000534:rehabilitation* / Q000628:therapy; D014792:Visual Acuity
keywords: childhood disability; children's views; interviews; paediatric ophthalmology; quality of life; visual impairment