Tadić V, Hundt G Lewando, Keeley S, Rahi J S
Population, Policy and Practice Programme, Lifecourse Epidemiology and Biostatistics Section, UCL Institute of Child Health, London, UK.
Child Care Health Dev. 2015 Mar;41(2):239-48. doi: 10.1111/cch.12158. Epub 2014 Jun 10.
Although the significant impact of visual disability in childhood has been widely recognized, children's own perspectives of living with a visual impairment have not been considered. We report the experiences of visually impaired (VI) children and young people aged 10-15 years about growing up with impaired sight.
The participants were 32 VI children and young people, aged 10-15 years [visual acuity logarithm of minimum angle of resolution (LogMAR) worse than 0.51] recruited through National Health Service (NHS) paediatric ophthalmology and developmental vision clinics and 11 VI pupils aged 12-17 attending a specialist school for pupils with disabilities. Individual semi-structured interviews with participants captured their experiences of living with a visual impairment. A child-centred interview topic guide was developed from a literature review, observations at ophthalmology clinics, consultation with health and education professionals working with VI children and young people, and interviews and a focus group with VI pupils from the specialist school. Collaborative qualitative thematic analysis by three researchers identified emergent themes. NVivo software was used for coding the data.
Analysis identified six themes concerning living with a visual impairment: (i) social relationships, participation and acceptance; (ii) independence and autonomy; (iii) psychological and emotional well-being; (iv) aspirations and concerns about the future; (v) functioning - home, school and leisure; and (vi) treatment of eye condition. Key issues included: the importance of family and peer support; balancing independence, support and safety; the emotional burden and adjustment of living with a disability; concerns about education and job prospects in the future; functional restrictions and limitations; and ongoing management of the eye condition.
The findings offer insights into the complex realities of living with visual impairment. They provide the basis for development of patient-reported outcome measures. They can also serve to help enrich the understanding of health professionals working with VI children and young people, potentially enabling them to better support them.
尽管儿童视力残疾的重大影响已得到广泛认可，但儿童自身对视力障碍生活的看法却未得到考虑。我们报告了10至15岁视力障碍儿童和青少年在视力受损情况下成长的经历。
参与者包括通过国民保健服务（NHS）儿科眼科和发育视力诊所招募的32名10至15岁的视力障碍儿童和青少年[最小分辨角对数视力（LogMAR）低于0.51]，以及11名就读于残疾学生专科学校的12至17岁视力障碍学生。对参与者进行的个人半结构化访谈记录了他们视力障碍生活的经历。通过文献综述、眼科诊所观察、与从事视力障碍儿童和青少年工作的健康和教育专业人员协商，以及对专科学校视力障碍学生的访谈和焦点小组讨论，制定了以儿童为中心的访谈主题指南。三位研究人员进行的协作定性主题分析确定了新出现的主题。使用NVivo软件对数据进行编码。
分析确定了与视力障碍生活相关的六个主题：（i）社会关系、参与和接纳；（ii）独立和自主；（iii）心理和情绪健康；（iv）对未来的期望和担忧；（v）功能——家庭、学校和休闲；（vi）眼部疾病治疗。关键问题包括：家庭和同伴支持的重要性；平衡独立、支持和安全；残疾生活的情感负担和调整；对未来教育和就业前景的担忧；功能限制；以及眼部疾病的持续管理。
这些发现为了解视力障碍生活的复杂现实提供了见解。它们为制定患者报告的结局指标提供了基础。它们还有助于丰富从事视力障碍儿童和青少年工作的健康专业人员的理解，从而有可能使他们更好地为他们提供支持。
