Defining the content for a new quality of life questionnaire for students with low vision (the Impact of Vision Impairment on Children: IVI_C).

PURPOSE: To obtain statements describing the impact of vision impairment on participation in every day activities of school-aged children (8-18 years) capturing their opinion, as the primary step in developing a pediatric vision-related quality of life instrument.
METHODS: Separate focus groups for students with low vision, parents and teachers plus in-depth individual interviews were conducted in Victoria, Australia. Focus groups followed a topic guide, were digitally audio recorded and transcribed verbatim. Statements were identified, coded and ascribed into major themes.
RESULTS: 102 participants provided just over 2600 statements (an average of 146 statements per verbatim transcript) which were classified into 5 themes: school/specialist instruction, social interaction, family, community and vision impairment peer interaction. The identified areas likely to facilitate good participation in every day activities, and accounted for 79% of the statements were class teacher knowledge and specialist support (40%) and social interaction (39%). The student perspective focused on communication skills and orientation and mobility whereas the specialist instructors' emphasis was on specialist support. Emphases across the themes varied between focus groups and highlight the benefit of including the perspectives of all stakeholders in questionnaire design.
CONCLUSIONS: The multi-perspective development strategy for a new questionnaire has established that it is crucial to integrate different stakeholders' perspectives. By doing so, it will be possible to develop a balanced questionnaire.