Abstract
Purpose: :
To identify through focus groups with parents of visually impaired children relevant content for a vision-targeted health-related quality of life questionnaire designed for children ages 6-12.
Methods: :
Six focus groups of parents of 22 children ages 6-12 with vision impairment of various etiologies were led by a trained facilitator. Discussion was guided by a semi-structured script addressing common issues related to vision impairment in children. Sessions were recorded, transcribed and coded per a standardized protocol for content analysis by trained coders who had established inter-rater reliability. Comments were placed in thematic categories and each coded as positive, negative or neutral.
Results: :
Focus groups generated 1917 comments, which were more negative (52%) than positive (37%). Comments were frequently about general vision (26% of all comments), with 58% being negative, 15% neutral and 27% positive. Poor distance vision and the inability to recognize people were commonly mentioned. School was also a frequent topic (23% of all comments), with a similar distribution (55% negative, 9% neutral and 36% positive). Negative comments typically referred to lack of adequate classroom accommodations for the child’s vision. Comments related to mobility (8% of total) were more evenly split between negative (48%) and positive (50%). Negative comments tended to refer to mobility in unfamiliar environments while positive comments were often about mobility in familiar areas. Comments about adaptive techniques and equipment (7% of total comments) were mostly positive (58%). Parental concerns (14% of comments) were largely negative (60%) citing worries about independence and adjustment. Psychosocial issues also represented 14% of comments, which were more negative (54%) than positive (39%), relaying challenges with acceptance by peers. Comments on eye care and its burden (7% of comments) were the most evenly split between negative, positive and neutral (41%, 26% and 33%, respectively). In general, the discussion highlighted the disparity of services across school districts and the need for support groups for these parents.
Conclusions: :
These results provide content guidance in the construction of items for an instrument to assess vision-targeted health-related quality of life in children with vision impairment. This information will be used in conjunction with the results of focus groups with visually impaired children, now ongoing.
Keywords: low vision • quality of life