We demonstrate that a child-centered approach to identifying the content for a self-report vision-related QoL questionnaire is feasible. We suggest this approach is critical to accurately capturing children and young peoples' subjective perspectives on the impact of living with impaired vision.

The study investigated mentalistic and descriptive discourse between school-aged children with visual impairment (VI) from birth, age 6-12 years, and their sighted mothers during joint book narrative (n=12), and in comparison to a group of sighted children of comparable age and verbal ability, and their mothers (n=14). The mothers of children with VI referred to the story characters' mental states and used descriptive elaborations to a greater extent than did the mothers of sighted children. The more mentalistic language the mothers of children with VI produced, the more mentalistic language was spoken by their children, although this was not independent of mothers' verbosity. The frequency of maternal elaborations, including their mentalistic language, was related the VI child's verbal cognition and socio-communicative competence. The findings offer an insight into nature and value of verbal scaffolding provided by mothers to their children with VI, shedding light on a potential candidate for future interventions.

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.

The study reveals trends in early social communicative development in the young VI population and provides preliminary reliability and validity testing for future research within a clinical context.

Ground-breaking progress in the field of neurodevelopmental disorders has allowed us far more insight into blindness and visual impairment (VI). The field of cognitive neuroscience has now established itself solidly in the literature, combining the knowledge from cognitive psychology, clinical studies related to brain damage, and neuroscience to open the way to significant advances in understanding. In recent years, the optimism engendered from the adult studies has played a large part in providing the impetus for developmental studies and in particular developmental neuroscience (Johnson 2005; Tager-Flusberg 1999). It is from this developmental neuroscience perspective that we can begin to understand the cognitive and behavioral manifestations associated with blindness and VI; albeit with the proviso that children with VI present particularly heterogeneous developmental patterns when compared to typically developing children (Fraiberg 1971). In considering the effects of blindness and VI, this chapter will focus on social understanding, language, cognition, and motor development. However, it begins with brief introductions to epidemiology and the effects of blindness on the functional and structural organization of the brain, which it is hoped will provide a useful context in which to consider the development of children who cannot see. Today the number of blind people in the world stands at 45 million, even though up to 75% of blindness could be avoided either by treatment or by prevention. The number of people with avoidable blindness will have doubled from 1990 to 2020 unless there is rapid and effective intervention, and the total number of the blind is projected to be as many as 76 million by 2020. To prevent this scenario, the World Health Organization (WHO) and the International Agency for the Prevention of Blindness (IAPB) have jointly initiated Vision 2020, a project that aims to eliminate the main causes of avoidable blindness by the year 2020, with the ultimate long-term goal of a world in which all avoidable blindness is eliminated and in which everyone with unavoidable vision loss reaches their full potential. The top priority of Vision 2020 is the prevention of childhood blindness. At present there are 1.4 million children under the age of 15 who are blind.