The Qualitative Experiences of Youth With Disorders of Visual Efficiency.

Abstract

Aim: Disorders of visual efficiency present with symptoms that can impact a young person's occupational engagement. Often these disorders result from concussion, but may also present idiopathically. Literature is available on the ocular implications of concussion and the symptoms of visual efficiency disorders, regardless of cause. Lacking is an understanding of the lived experience of diagnosed youth. Patient-reported experiences on life with disorders of visual efficiency can inform client-centered evaluation and treatment. The aim of this study was to describe the lived experience of youth with visual efficiency disorders resulting from concussion or unknown etiology.

Methodology: Retrospective descriptive qualitative study of anonymized verbatim transcripts from semi-structured individual interviews (n = 4) and coed focus groups (n = 20).

Results: Disorders of visual efficiency influence participation across occupational domains, affect social-emotional well-being, and are often managed through environmental and activity adaptations. Participants described experiences of occupational alienation, family and peer challenges, and variability in supports at school.

Conclusions: Similarities exist in occupational, social-emotional and adaptive needs of youth with disorders of visual efficiency resulting from either concussion or unknown etiology. These self-described experiences can assist caregivers, educators, and therapists in evaluation, intervention, and implementation of supports to improve engagement in valuable life roles.