eHealth Center, Behaviour Design Lab (BD Lab) - Universitat Oberta de Catalunya, Rambla del Poblenou, 156, Barcelona, Spain; Vision, Optometry & Health (VOS), Department of Optics and Optometry, Universitat Politècnica de Catalunya. Violinista Vellsolà, 37, Terrassa, Spain.
eHealth Center, Behaviour Design Lab (BD Lab) - Universitat Oberta de Catalunya, Rambla del Poblenou, 156, Barcelona, Spain.
Res Dev Disabil. 2023 Jul;138:104538. doi: 10.1016/j.ridd.2023.104538. Epub 2023 May 16.
Receiving a diagnosis of a child with untreatable visual impairment (VI) may have a negative impact on parents and caregivers, and affect their quality of life (QoL).
To use a qualitative research approach to determine the impact that caregiving a child with a VI has on the QoL of caregivers in Catalonia (Spain).
An observational study was designed in which nine parents of children with VI (6 mothers) were recruited following an intentional sampling scheme. In-depth interviews were conducted, and a thematic analysis was performed to identify main themes and subthemes. The QoL domains defined in the questionnaire WHOQoL-BREF guided data interpretation.
An overarching theme was defined (the weight on one's shoulders), as well as two main themes (obstacles race and emotional impact) and seven subthemes. QoL was negatively affected by a general lack of knowledge and understanding regarding VI in children and its implications for children and caregivers, whereas social support, gaining knowledge, or cognitive reappraisal had a positive effect.
Caregiving for children with VI affects all QoL domains, resulting in persistent psychological distress. Both administrations and health care providers are encouraged to develop strategies to assist caregivers in their demanding roles.
被诊断出孩子患有无法治愈的视力障碍（VI）可能会对父母和照顾者产生负面影响，并影响他们的生活质量（QoL）。
采用定性研究方法确定照顾患有 VI 的儿童对加泰罗尼亚（西班牙）照顾者生活质量的影响。
设计了一项观察性研究，通过有目的的抽样方案招募了 9 名 VI 儿童的父母（6 名母亲）。进行了深入的访谈，并进行了主题分析，以确定主要主题和子主题。问卷 WHOQoL-BREF 中定义的 QoL 领域指导数据解释。
定义了一个总体主题（肩上的重担），以及两个主要主题（障碍竞赛和情绪影响）和七个子主题。由于对儿童 VI 的普遍缺乏知识和理解，以及对儿童和照顾者的影响，QoL 受到负面影响，而社会支持、获得知识或认知重评则产生了积极影响。
照顾患有 VI 的儿童会影响所有 QoL 领域，导致持续的心理困扰。管理部门和医疗保健提供者都被鼓励制定策略来帮助照顾者承担他们的艰巨角色。
