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Seeing it my way: living with childhood onset visual disability

Seeing it my way: living with childhood onset visual disability

Tadić, V. ORCID: 0000-0003-3982-0340, Hundt, G. Lewando, Keeley, S. and Rahi, J. S. (2014) Seeing it my way: living with childhood onset visual disability. Child: Care, Health and Development, 41 (2). pp. 239-248. ISSN 0305-1862 (Print), 1365-2214 (Online) (doi:

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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.

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.

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.

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.

Item Type: Article
Uncontrolled Keywords: visual impairment, children and young people, quality of life
Subjects: B Philosophy. Psychology. Religion > BF Psychology
Faculty / Department / Research Group: Faculty of Education, Health & Human Sciences
Faculty of Education, Health & Human Sciences > Applied Psychology Research Group
Faculty of Education, Health & Human Sciences > Department of Psychology, Social Work & Counselling
Last Modified: 17 May 2019 14:54
Selected for GREAT 2016: None
Selected for GREAT 2017: None
Selected for GREAT 2018: None
Selected for GREAT 2019: GREAT 6
Selected for REF2021: None

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