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

Abstract

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.