April 2011
Volume 52, Issue 14
Free
ARVO Annual Meeting Abstract  |   April 2011
Identifying the Content for a Pediatric Vision-Targeted Health-Related Quality of Life Questionnaire: Results of Parent Focus Groups
Author Affiliations & Notes
  • Dawn K. DeCarlo
    Ophthalmology, Univ of Alabama at Birmingham, Birmingham, Alabama
  • Gerald McGwin, Jr.
    Ophthalmology, Univ of Alabama at Birmingham, Birmingham, Alabama
  • Cynthia Owsley
    Ophthalmology, Univ of Alabama at Birmingham, Birmingham, Alabama
  • Footnotes
    Commercial Relationships  Dawn K. DeCarlo, None; Gerald McGwin, Jr., None; Cynthia Owsley, None
  • Footnotes
    Support  K23EY018864;R21EY16801; EyeSight Foundation of Alabama, Research to Prevent Blindness; Able Trust
Investigative Ophthalmology & Visual Science April 2011, Vol.52, 4235. doi:
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      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.

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      © ARVO (1962-2015); The Authors (2016-present)

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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 
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