Feasibility of the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) with a visual impairment: a pilot study

• Main Authors: Ellen Bernadette Maria Elsman, Ruth Marie Antoinette van Nispen, Gerardus Hermanus Maria Bartholomeus van Rens
• Format: Article
• Language: English
• Published: BMC 2017-05-01
• Series: Health and Quality of Life Outcomes
• Subjects: Visual impairment; Children; Adolescents; Young adults; Pilot study; Participation and Activity Inventory (PAI)
• Online Access: http://link.springer.com/article/10.1186/s12955-017-0677-x

Abstract Background Having a visual impairment affects quality of life, daily functioning and participation. To assess rehabilitation needs of visually impaired children and young adults, the Participation and Activity Inventory for Children and Youth (PAI-CY) and Young Adults (PAI-YA) were developed. The PAI-CY comprises four questionnaires for different age categories: 0–2 years, 3–6 years, 7–12 years and 13–17 years. This pilot study assesses the feasibility and acceptability of the PAI-CY and PAI-YA, and the relevance of the content of the questionnaires. Methods In addition to the regular admission procedure, the PAI-CY and PAI-YA were completed by 30 participants (six per questionnaire). For the PAI-CY, parents completed the questionnaire online prior to admission. From age 7 years onwards, children completed the questionnaire face-to-face with a rehabilitation professional during the admission procedure. Young adults completed the PAI-YA online. Subsequently, participants and professionals administered an evaluation form. Results Overall, 85% of the parents rated all aspects of the PAI-CY neutral to positive, whereas 100% of all children and young adults were neutral to positive on all aspects, except for the duration to complete. The main criticism of professionals was that they were unable to identify actual rehabilitation needs using the questionnaires. Minor adjustments were recommended for the content of questions. Conclusions Parents, children and young adults were mostly satisfied with the questionnaires, however, professionals suggested some changes. The adaptations made should improve satisfaction with content, clarification of questions, and satisfaction with the questionnaires in compiling a rehabilitation plan. Although face and content validity has been optimized, a larger field study is taking place to further develop and evaluate the questionnaires.