Parents’ Experiences of Caring for Children with Congenital Rubella Syndrome (CRS) in Remote and Rural Areas of Indonesia

Dublin Core

Title

Parents’ Experiences of Caring for Children with Congenital Rubella Syndrome (CRS) in Remote and Rural Areas of Indonesia

Subject

Caring; congenital; parents; remote; Rubella syndrome

Description

Background: Parents of children with Congenital Rubella Syndrome (CRS) in
rural areas face limited access to medical care and specialised services, financial
difficulties, social isolation, and stigma. Research on their experiences is limited.
Purpose: This study explores parents’ experiences of caring for their children with
CRS in rural areas of Indonesia.
Methods: The research used a descriptive phenomenological approach, purposive
sampling to collect parents of children with CRS from the shelter, and snowball
sampling for other participants. Inclusion criteria included parents who cared for
CRS children over than two years old, could express their experiences, and spoke
Indonesian. Twenty-five parents participated in an in-depth semi-structured
interview. The data were analysed using the Colaizzi method.
Results: This research found that parents caring for sick children in rural areas
experienced life-altering situations that affected their mental health. In addition,
caring for sick children also caused emotional disturbances and tension in family
life. Other challenges included getting proper treatment for their child, especially in
remote rural areas, and difficulty to reach health services. Therefore, proper mental
health treatment and support were essential for parents who cared for sick children
in rural areas.
Conclusion: This study describes complexities of parents’ experiences of caring
for children with CRS, such as difficulty to accept the child's condition and feeling
burdened by their child’s case. Further studies are needed to understand cultural
influences and expand the study area.

Creator

Petrus Kanisius Siga Tage1

, Herliana Monika Azi Djogo1

, Erna Febriyanti1

, Yulia Martiningsih Karmila

Letor1
, Maria Yoanita Bina1

, Maria Yasintha Goa Goa1

, Angela Muryanti Gatum1

Source

https://doi.org/10.14710/nmjn.v13i1.50633

Date

28 April 2023

Contributor

PERI IRAWAN

Format

PDF

Language

ENGLISH

Type

TEXT

Files

Collection

Citation

Petrus Kanisius Siga Tage1 , Herliana Monika Azi Djogo1 , Erna Febriyanti1 , Yulia Martiningsih Karmila Letor1 , Maria Yoanita Bina1 , Maria Yasintha Goa Goa1 , Angela Muryanti Gatum1, “Parents’ Experiences of Caring for Children with Congenital Rubella Syndrome (CRS) in Remote and Rural Areas of Indonesia,” Repository Horizon University Indonesia, accessed February 21, 2026, https://repository.horizon.ac.id/items/show/11173.