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 psychological distress. Both administrations and health care providers are encouraged to develop strategies to assist caregivers in their demanding roles.

Keywords: Caregivers; Children; Qualitative research; Quality of life; Rare diseases; Visual impairment.