Centre for Paediatric Epidemiology and Biostatistics, UCL Institute of Child Health, London, United Kingdom.
Invest Ophthalmol Vis Sci. 2010 Apr;51(4):1886-90. doi: 10.1167/iovs.09-4522. Epub 2009 Nov 20.
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.
目的。调查视障儿童及其家庭参与健康服务研究的模式。方法。作者比较了两项视障儿童生活质量（QoL）研究中参与者和未参与者的临床和社会人口学特征。在研究 1 中，作者对 10 至 15 岁的视障儿童和青少年进行了有关其视力相关生活质量（VRQoL）的访谈，这是为该人群开发 VRQoL 工具的计划的第一阶段。107 名视力障碍儿童（较好眼视力对数视力表 LogMar 差于 0.51）受邀参加访谈。研究 2 使用现有的通用工具在邮寄调查中调查了视障儿童的健康相关生活质量（HRQoL）。邀请了 151 名患有遗传性视网膜疾病的 2 至 16 岁的视障儿童和青少年参加调查。结果。总体参与率低于 50%。在两项研究中，来自白人种族和较富裕社会经济背景的参与者人数过多。参与率与年龄、性别或临床特征无关。结论。作者认为，在针对社会经济贫困或少数族裔儿童的儿童和家庭为中心的儿童视觉残疾研究中，存在参与障碍。他们敦促在儿童视觉残疾的进一步健康服务研究中评估和报告参与模式。如果不认识到存在“无声的声音”，可能会对视障儿童的公平和适当的服务规划和提供产生重要影响。
