Psychology, Health & ICT (PSINET) - Universitat Oberta de Catalunya, Rambla del Poblenou, 156, Barcelona, Spain; Vision, Optometry and Health (VOS) Research Group - Department of Optics and Optometry, Universitat Politècnica de Catalunya, Violinista Vellsolà, 37, Terrassa, Spain.
Psychology, Health & ICT (PSINET) - Universitat Oberta de Catalunya, Rambla del Poblenou, 156, Barcelona, Spain.
Res Dev Disabil. 2018 Dec;83:120-131. doi: 10.1016/j.ridd.2018.08.013. Epub 2018 Sep 5.
To describe the experience of parents caregiving children with visual impairment (VI), to determine how their quality of life (QoL) is assessed, and to summarize QoL indicators through a review of the literature.
A thematic search through PubMed, PsycINFO, ProQuest and ERIC databases was performed of articles published in English in peer-reviewed journals between 1996 and 2016. Publications were included if they referred to both children or adolescents with VI and their parents, or the family context. The complete selection process disclosed 37 papers suitable for review.
Researchers mainly used ad hoc interviews and questionnaires to investigate this topic. Two specific tools, the CarCGQoL (congenital glaucoma) and the OTI (congenital cataract), were identified. Most of the information collected referred to the parents' opinion concerning professional services, their needs and worries, the impact of VI on their emotional well-being and the strategies to assist parents to cope and adjust to the situation.
The experience of caring for a child with VI is mainly influenced by psychosocial factors. Information and guidance to understand the child's visual condition are insufficient, and the available resources reinforce concerns of caregivers regarding the child's opportunities, expressed as negative emotional reactions.
描述视障儿童（VI）父母的照护体验，确定如何评估其生活质量（QoL），并通过文献回顾总结 QoL 指标。
通过 PubMed、PsycINFO、ProQuest 和 ERIC 数据库，以英文同行评议期刊 1996 年至 2016 年发表的文章为主题进行检索。如果文章涉及 VI 儿童或青少年及其父母或家庭环境，则将其纳入研究。完整的选择过程共发现 37 篇适合综述的论文。
研究人员主要使用特定的访谈和问卷调查来研究这一主题。确定了两种特定的工具，即 CarCGQoL（先天性青光眼）和 OTI（先天性白内障）。收集到的大多数信息都涉及父母对专业服务的看法、他们的需求和担忧、VI 对他们情绪健康的影响，以及帮助父母应对和适应这种情况的策略。
照顾 VI 儿童的体验主要受心理社会因素影响。了解孩子视觉状况的信息和指导不足，可用资源强化了照顾者对孩子机会的担忧，表现为负面的情绪反应。
