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.
journal_name
Res Dev Disabiljournal_title
Research in developmental disabilitiesauthors
Lupón M,Armayones M,Cardona Gdoi
10.1016/j.ridd.2018.08.013subject
Has Abstractpub_date
2018-12-01 00:00:00pages
120-131eissn
0891-4222issn
1873-3379pii
S0891-4222(18)30194-Xjournal_volume
83pub_type
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