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'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, EL; Keeley, S; Cumberland, P; Hundt, GL; Rahi, JS; (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 , 51 (4) 1886 - 1890. 10.1167/iovs.09-4522. Green open access

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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. 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.

Type: Article
Title: 'Silent Voices' in Health Services Research: Ethnicity and Socioeconomic Variation in Participation in Studies of Quality of Life in Childhood Visual Disability
Open access status: An open access version is available from UCL Discovery
DOI: 10.1167/iovs.09-4522
Publisher version: http://doi.org/10.1167/iovs.09-4522
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
UCL classification: UCL
UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > UCL GOS Institute of Child Health > Population, Policy and Practice Dept
URI: https://discovery.ucl.ac.uk/id/eprint/162432
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