Marta Lupón1, Manuel Armayones2, Genís Cardona3. 1. 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. Electronic address: marta.lupon@upc.edu. 2. Psychology, Health & ICT (PSINET) - Universitat Oberta de Catalunya, Rambla del Poblenou, 156, Barcelona, Spain. Electronic address: marmayones@uoc.edu. 3. Vision, Optometry and Health (VOS) Research Group - Department of Optics and Optometry, Universitat Politècnica de Catalunya, Violinista Vellsolà, 37, Terrassa, Spain. Electronic address: genis.cardona@upc.edu.
Abstract
AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.
Authors: David A Leske; Sarah R Hatt; Yolanda S Castañeda; Suzanne M Wernimont; Laura Liebermann; Christina S Cheng-Patel; Eileen E Birch; Jonathan M Holmes Journal: Am J Ophthalmol Date: 2019-08-01 Impact factor: 5.258