Purchase this article with an account.
Dawn K. DeCarlo, Gerald McGwin, Jr., Cynthia Owsley; Identifying the Content for a Pediatric Vision-Targeted Health-Related Quality of Life Questionnaire: Results of Parent Focus Groups. Invest. Ophthalmol. Vis. Sci. 2011;52(14):4235.
Download citation file:
© ARVO (1962-2015); The Authors (2016-present)
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.
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.
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.
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.
This PDF is available to Subscribers Only