Caring for a child with retinoblastoma: Experience of Ethiopian parents.
Pediatr Blood Cancer
; 70(3): e30163, 2023 03.
Article
en En
| MEDLINE
| ID: mdl-36545916
ABSTRACT
OBJECTIVE:
This study explored the lived experience of parents of children with retinoblastoma. DESIGN ANDMETHOD:
A phenomenological qualitative study design was used, and a purposive sampling technique to recruit parents of children with retinoblastoma. Semi-structured interviews were conducted to document the lived experience of participants, who were asked to narrate their experiences caring for a child with retinoblastoma, thinking back to the day they learned about their child's condition, as well as their thoughts about the future. The interviews were conducted in Amharic and Oromo language, and audio recordings were transcribed and translated to English. Data were analyzed using thematic analysis.RESULTS:
Thirteen parents (seven mothers, six fathers) participated in the study. Collectively, the children of the participants represented all the stages of the retinoblastoma journey (i.e., diagnosis, treatment, remission, and recurrence). Five major themes emerged from the thematic dataanalysis:
(a) reactions when learning the child's condition; (b) receiving health care; (c) costs of caregiving; (d) support; and (e) uncertainties.CONCLUSION:
The lived experiences of parents of children with retinoblastoma revealed a significant mental health and psychosocial burden. The sources of mental distress were found to be complex and varied. Holistic care for retinoblastoma should include programs that address the biopsychosocial needs of caregivers.Palabras clave
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Retinoblastoma
/
Neoplasias de la Retina
Tipo de estudio:
Qualitative_research
Idioma:
En
Revista:
Pediatr Blood Cancer
Año:
2023
Tipo del documento:
Article
País de afiliación:
Etiopia