'Silent voices' in health services research: ethnicity and socioeconomic variation in participation in studies of quality of life in childhood visual disability

Investigative Ophthalmology & Visual Science
Valerie TadićJugnoo Sangeeta Rahi

Abstract

Purpose. To investigate patterns of participation of visually impaired (VI) children and their families in health services research. Methods. The authors compared clinical and sociodemographic characteristics of children and their families who participated with those who did not participate in two studies of quality of life (QoL) of VI children. In Study 1, the authors interviewed VI children and adolescents, aged 10 to 15 years, about their vision-related quality of life (VRQoL) as the first phase of a program to develop a VRQoL instrument for this population. One hundred seven children with visual impairment (visual acuity in the better eye LogMar worse than 0.51) were invited to participate in the interviews. Study 2 investigated health-related quality of life (HRQoL) of VI children using an existing generic instrument, administered in a postal survey. 151 VI children and adolescents, aged 2 to 16 years, with hereditary retinal disorders were invited to participate in the survey. Results. The overall participation level was below 50%. In both studies, participants from white ethnic and more affluent socioeconomic backgrounds were overrepresented. Participation did not vary by age, sex, or clinical characteristics. Conclusion...Continue Reading

Citations

Apr 16, 2013·Research in Developmental Disabilities·Spela Golubović, Renata Skrbić
Oct 15, 2013·Ophthalmology·Valerija TadićUNKNOWN Vision-related Quality of Life Group
Apr 5, 2012·Journal of Applied Research in Intellectual Disabilities : JARID·Jane M Cramm, Anna P Nieboer
Jun 11, 2014·Child: Care, Health and Development·V TadićUNKNOWN Vision-related Quality of Life (VQoL) group
Feb 27, 2016·PloS One·Valerija TadićUNKNOWN Vision-related Quality of Life (VQoL) group
Apr 9, 2021·The British Journal of Ophthalmology·Alexandra O RobertsonJugnoo S Rahi
Jun 8, 2021·American Journal of Ophthalmology·Alexandra O RobertsonUNKNOWN Child Vision PROMs group

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