Quality of life of caregivers of children with visual impairment: A qualitative approach

被引:2
|
作者
Lupon, Marta [1 ,2 ]
Armayones, Manuel [1 ]
Cardona, Genis [3 ]
机构
[1] Univ Oberta Catalunya, Ehlth Ctr, Behav Design Lab BD Lab, eHealth Ctr, 156, Barcelona, Spain
[2] Univ Polite cn Catalunya, Dept Opt & Optometry, Vision Optometry & Hlth VOS, Violinista Vellsola 37, Terrassa, Spain
[3] Univ Polite cn Catalunya, Dept Opt & Optometry, Appl Opt & Image Proc Grp GOAPI, Violinista Vellsol 37, Terrassa, Spain
关键词
Caregivers; Children; Quality of life; Qualitative research; Rare diseases; Visual impairment; PARENTS; EXPERIENCES; BLINDNESS; MOTHERS; VISION; IMPACT;
D O I
10.1016/j.ridd.2023.104538
中图分类号
G76 [特殊教育];
学科分类号
040109 ;
摘要
Background: 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).Aims: 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).Methods: 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.Results: 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.Conclusions: Caregiving for children with VI affects all QoL domains, resulting in persistent psy-chological distress. Both administrations and health care providers are encouraged to develop strategies to assist caregivers in their demanding roles.
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页数:9
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