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. 2016 Oct;25(10):2633-2643.
doi: 10.1007/s11136-016-1292-8. Epub 2016 Apr 13.

Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach

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Comprehending the impact of low vision on the lives of children and adolescents: a qualitative approach

Linda Rainey et al. Qual Life Res. 2016 Oct.

Abstract

Purpose: To develop a comprehensive, conceptual model detailing the aspects of a child's life (<18 years) that are affected by low vision.

Methods: Three stakeholders were involved in the developmental process of the conceptual model: children and adolescents with a visual impairment (n = 40), parents of children with a visual impairment (n = 25) and professionals of multidisciplinary rehabilitation centres and specialised schools (n = 25). Qualitative methods including focus groups, online and face-to-face brainstorming sessions and concept mapping were used to investigate the impact of visual impairment on the lives of children and adolescents and to create the conceptual model. To aid interpretation of the large age range, four age-bands were formed.

Results: For each age-band (0-2, 3-6, 7-12 and 13-17 years), a total of 153, 200, 297 and 306 statements were generated by all stakeholders, respectively. The conceptual models show that low vision affects the sensorial development as well as the physical, psychological and social well-being of children and adolescents. In addition, identified external factors (i.e. education/employment and parental influence) can either facilitate or hinder participation.

Conclusions: The developed model shows which life aspects of children are affected by low vision. The needs identified by children and adolescents correspond not entirely to the perspective of parents and low vision professionals. Future research should focus on developing and validating a new questionnaire based on the conceptual model. This will aid goal setting, rehabilitation referral and the accomplishment of developmental milestones and life transitions of children and adolescents with a visual impairment, ultimately improving their participation and quality of life.

Keywords: Adolescents; Children; Concept mapping; International Classification of Functioning, Disability and Health for Children and Youth; Visual impairment.

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Conflict of interest statement

A grant for this study was provided by Royal Dutch Visio. The authors declare that they have no conflict of interest.

Figures

Fig. 1
Fig. 1
Concept-mapping results of life situations affected by a visual disability, according to low vision professionals; from left to right age-band 0–2, 3–6, 7–12 and 13–17. The maps show clusters of items (the dots) that were considered similar in thematic content: more layers indicate greater importance
Fig. 2
Fig. 2
Conceptual model of life areas affected by low vision in children and adolescents. The domains are applicable to all age-bands, with the exception of those indicated with a number (2: 3–6; 3: 7–12; or 4: 13–17)

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