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V. Tadic, E. L. Hamblion, S. Keeley, G. Hundt, A. T. Moore, J. S. Rahi; ‘Silent Voices’ in Research With Visually Impaired Children: Ethnicity & Socio-Economic Variation in Participation in Studies of Vision & Health Related Quality of Life. Invest. Ophthalmol. Vis. Sci. 2009;50(13):4694.
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To investigate factors influencing participation of visually impaired (VI) children and their families in health services research, which is acknowledged to be challenging.
We compared clinical and socio-demographic characteristics of children and families who were invited and those who participated in two studies of vision-related (VR) and health-related (HR) quality of life (QoL) in VI children. In Study 1 we interviewed VI children about their VR QoL as the first phase of developing a VR-QoL instrument for this population. 107 children with VI (visual acuity in the better eye<6/18) due to any disorder, but in absence of other significant impairments, were invited to participate in the interviews, with 32 taking part (30% response). Study 2 investigated HR QoL of VI children through a generic instrument PedsQL. 151 VI children and young adults with inherited retinal disorders were invited to participate; 44 consented (29% response).
Overall response rates were comparable to those in similar prior studies. Notably, in both studies, participants from ethnic minorities and less affluent socio-economic backgrounds were under-represented. The proportions of subjects of white ethnicity were significantly larger in achieved versus invited samples (80.7% vs. 62.5% and 79.6% vs. 63.2%, p<.05, Study 1 & Study 2 respectively); as were the proportions of families with the most affluent socio-economic status (37.5% vs. 18.4% and 29.3% vs. 14.6%, p<.05, Study 1 & Study 2 respectively). Participation did not vary by age, gender, visual acuity and age of VI onset in either study (p>.05).
We suggest that there are ongoing barriers to participation in child and family centred research on visual disability for individuals from socio-economically deprived or ethnic minority groups. Such patterns of (non) participation seem to be consistent across studies that differ in design, recruitment procedure and demands placed upon participants. We urge assessment of selection bias in further health services research. Failure to elicit ‘silent voices’ is likely to have important implications for equitable and appropriate service planning and provision.
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