'Silent voices' in health services research : ethnicity and socioeconomic variation in participation in studies of quality of life in childhood visual disability
Tadic, V., Hamblion, E. L., Keeley, Sarah, Cumberland, P., Lewando Hundt, Gillian and Rahi, J. S.. (2010) '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, Vol.51 (No.4). pp. 1886-1890. ISSN 0146-0404Full text not available from this repository.
Official URL: http://dx.doi.org/10.1167/iovs.09-4522
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.
Conclusions. The authors suggest that there are barriers to participation in child- and family-centered research on childhood visual disability for children from socioeconomically deprived or ethnic minority groups. They urge assessment and reporting of participation patterns in further health services research on childhood visual disability. Failure to recognize that there are “silent voices” is likely to have important implications for equitable and appropriate service planning and provision for VI children.
|Item Type:||Journal Article|
|Subjects:||R Medicine > R Medicine (General)|
|Divisions:||Faculty of Social Sciences > School of Health and Social Studies|
|Journal or Publication Title:||Investigative Ophthalmology & Visual Science|
|Publisher:||Association for Research in Vision and Ophthalmology|
|Official Date:||April 2010|
|Page Range:||pp. 1886-1890|
|Access rights to Published version:||Restricted or Subscription Access|
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