Por favor, use este identificador para citar o enlazar este ítem:
http://hdl.handle.net/10609/148617
Título : | Quality of life of caregivers of children with visual impairment: A qualitative approach |
Autoría: | LUPÓN, MARTA Armayones, Manuel Cardona, Genis |
Citación : | Lupón, M. [Marta]. Armayones, M. [Manuel]. Cardona, G. [Genís]. (2023). Quality of life of caregivers of children with visual impairment: A qualitative approach, Research in Developmental Disabilities, Volume 138, 104538, ISSN 0891-4222. DOI: https://doi.org/10.1016/j.ridd.2023.104538 |
Resumen : | 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. |
Palabras clave : | caregivers children quality of life qualitative research rare diseases visual impairment |
DOI: | https://doi.org/10.1016/j.ridd.2023.104538 |
Tipo de documento: | info:eu-repo/semantics/article |
Versión del documento: | info:eu-repo/semantics/publishedVersion |
Fecha de publicación : | 16-may-2023 |
Licencia de publicación: | https://creativecommons.org/licenses/by/4.0/ |
Aparece en las colecciones: | Articles Articles cientÍfics |
Ficheros en este ítem:
Fichero | Descripción | Tamaño | Formato | |
---|---|---|---|---|
1-s2.0-S0891422223001166-main.pdf | 777,63 kB | Adobe PDF | Visualizar/Abrir |
Comparte:
Los ítems del Repositorio están protegidos por copyright, con todos los derechos reservados, a menos que se indique lo contrario.