Abstract
PurposeTo develop a comprehensive, conceptual model detailing the aspects of a child’s life (<18 years) that are affected by low vision.MethodsThree 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.ResultsFor 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.ConclusionsThe 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.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-016-1292-8) contains supplementary material, which is available to authorized users.
Highlights
Low vision is estimated to affect around 2600 children aged 0–14 years in the Netherlands [1]
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)
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
Summary
Low vision is estimated to affect around 2600 children aged 0–14 years in the Netherlands (total population approximately 17 million) [1]. The main causes of low vision among Western children are developmental and genetic disorders [2]. Khadka et al [8] showed that, children and adolescents with a visual impairment have lifestyles similar to that of their sighted peers, they experience participation restrictions in the areas of leisure time and sports and restrictions with respect to social interaction. Starting and sustaining social and romantic relationships and interactive play is hindered by low vision in children and adolescents [9,10,11,12]. Rehabilitation services can facilitate improvements in functional status, participation in activities and quality of life; little is known about participation goals in children and adolescents with low vision [13]
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