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Cerebral visual impairment (CVI) is one of the most common causes of visual impairment in children. CVI is a complex visual disorder to understand and explain to others. Understanding one’s diagnosis and being able to explain it to others may facilitate adaptive functioning. To educate children and young people on their CVI and accompanying needs, the computerized psycho-educational programme ‘My CVI’ has been developed. A mixed-methods study was conducted to evaluate the effect of this programme. The aims of the programme are to increase participants’ knowledge of CVI, as well as self-esteem (SDQ), adaptive coping (SCQ), and well-being (Cantril, PERIK, HRQoL). Thirty-nine children (aged 7–16 years; 51% boys) participated in a pre-test, post-test, and follow-up assessment. Qualitative interviews were conducted for a subjective evaluation of the programme. Participation in the psycho-educational programme resulted in increased knowledge of CVI, as well as a better teacher-reported social and academic self-concept and less self-reported feelings of social exclusion. No effects of participation were found on self-reported self-esteem, coping or other measures for well-being. An increase in knowledge of CVI was not associated with changes in psychosocial functioning. Qualitative data revealed that children enjoyed participating in the programme; they learned there are others with CVI, and gained more knowledge and practical tools on how to deal with their CVI. The results provide preliminary evidence that participation in the psycho-educational programme ‘My CVI’ increases children’s knowledge of their visual impairment as well as improves social outcomes and feelings of inclusion. The highest gains may be achieved through a personalized approach, depending on a child’s (developmental) age and parental involvement.

The juvenile variant of Neuronal Ceroid Lipofuscinosis (CLN3 disease/Batten disease) is a rare progressive brain disease in children and young adults, characterized by vision loss, decline in cognitive and motor capacities and epilepsy. Children with CLN3 disease often show disturbed behaviour and emotions. The aim of this study is to gain a better understanding of the behaviour and emotions of children with CLN3 disease and to examine the support that the children and their parents are receiving. A combination of qualitative and quantitative analysis was used to analyse patient files and parent interviews. Using a framework analysis approach a codebook was developed, the sources were coded and the data were analysed. The analysis resulted in overviews of (1) typical behaviour and emotions of children as a consequence of CLN3 disease, (2) the support children with CLN3 disease receive, (3) the support parents of these children receive, and (4) the problems these parents face. For a few children their visual, physical or cognitive deterioration was found to lead to specific emotions and behaviour. The quantitative analysis showed that anxiety was reported for all children. The presented overviews on support contain tacit knowledge of health care professionals that has been made explicit by this study. The overviews may provide a lead to adaptable support-modules for children with CLN3 disease and their parents.