skip to main content

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

*Petrus Kanisius Siga Tage orcid scopus  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Herliana Monika Azi Djogo orcid  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Erna Febriyanti orcid  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Yulia Martiningsih Karmila Letor orcid  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Maria Yoanita Bina orcid  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Maria Yasintha Goa Goa orcid  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Angela Muryanti Gatum  -  Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia
Open Access Copyright (c) 2023 Nurse Media Journal of Nursing
Creative Commons License This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Citation Format:
Abstract

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.
Fulltext View|Download
Keywords: Caring; congenital; parents; remote; Rubella syndrome

Article Metrics:

  1. Altman, L., Zurynski, Y., Breen, C., Hoffmann, T., & Woolfenden, S. (2018). A qualitative study of health care providers’ perceptions and experiences of working together to care for Children with Medical Complexity (CMC). BMC Health Services Research, 18(1), 1–11. https://doi.org/10.1186/S12913-018-2857-8/tables/6
  2. Armstrong, N. (2015). The health-related quality of life in mothers of surviving deaf-blind adult children with Congenital Rubella Syndrome in the United States. European Scientific Journal, 11(10), 31-52
  3. Bartholomew, T. T., Joy, E. E., Kang, E., & Brown, J. (2021). A Choir or cacophony? sample sizes and quality of conveying participants’ voices in phenomenological research. Methodological Innovations, 14(2), 2–14. https://doi.org/10.1177/20597991211040063
  4. Bell, M., Biesecker, B. B., Bodurtha, J., & Peay, H. L. (2019). Uncertainty, hope, and coping efficacy among mothers of children with duchenne/becker muscular dystrophy. Clinical Genetics, 95(6), 677–683. https://doi.org/https://doi.org/10.1111/cge.13528
  5. Booth, A., Purnagunawan, R. M., & Satriawan, E. (2019). Towards a healthy Indonesia? Bulletin of Indonesian Economic Studies, 55(2), 133–155. https://doi.org/10.1080/00074918.2019.1639509
  6. Brewer, A. (2018). “We were on our own”: Mothers’ experiences navigating the fragmented system of professional care for autism. Social Science & Medicine, 215, 61–68. https://doi.org/10.1016/j.socscimed.2018.08.039
  7. Brown, D. W., Warrener, L., Scobie, H. M., Donadel, M., Waku-Kouomou, D., Mulders, M. N., & Rota, P. A. (2020). Rapid diagnostic tests to address challenges for global measles surveillance. Current Opinion in Virology, 41, 77–84. https://doi.org/10.1016/j.coviro.2020.05.007
  8. Coombes, J., Hunter, K., Mackean, T., Holland, A. J. A., Sullivan, E., & Ivers, R. (2018). Factors that impact access to ongoing health care for first nation children with a chronic condition. BMC Health Services Research, 18(1), 1–9. https://doi.org/10.1186/S12913-018-3263-y/figures/1
  9. Cypress, B. S. (2017). Rigor or reliability and validity in qualitative research: Perspectives, strategies, reconceptualization, and recommendations. Dimensions of Critical Care Nursing, 36(4), 253–263. https://doi.org/10.1097/DCC.0000000000000253
  10. De los Santos, J. A. A. (2022). Illuminating the experience of stigma among persons living with HIV using participative drawing method. Nurse Media Journal of Nursing, 12(2), 196–207. https://doi.org/10.14710/nmjn.v12i2.46517
  11. Hatzmann, J., Peek, N., Heymans, H., Maurice-Stam, H., & Grootenhuis, M. (2014). Consequences of caring for a child with a chronic disease: Employment and leisure time of parents. Journal of Child Health Care, 18(4), 346–357. https://doi.org/10.1177/1367493513496668
  12. Källquist, A., & Salzmann-Erikson, M. (2019). Experiences of having a parent with serious mental illness: An interpretive meta-synthesis of qualitative literature. Journal of Child and Family Studies, 28(8), 2056–2068. https://doi.org/https://doi.org/10.1007/s10826-019-01438-0
  13. Kharisma, D. D. (2020). Indonesian health system performance assessment: The association between health insurance expansion with health status and health care access. Jurnal Perencanaan Pembangunan: The Indonesian Journal of Development Planning, 4(3), 312–326. https://doi.org/10.36574/jpp.v4i3.134
  14. Lanzieri, T., Redd, S., Abernathy, E., & Icenogle, J. (2020, April 28). Congenital Rubella Syndrome. Centers for Disease Control and Prevention. https://www.cdc.gov/vaccines/pubs/surv-manual/chpt15-crs.html
  15. Leon, A. M., Wallenberg, J., & Holliker, S. M. (2018). The impact of child congenital heart disease on parents of very young children: Considerations for social work practice. The Journal of Contemporary Social Services, 94(2), 129–135. https://doi.org/10.1606/1044-3894.4285
  16. Lian, X., Jia, Y., Wang, L., Wang, Y., Li, X., & Jia, H. (2022). Mothers caring experiences of children with congenital hand or foot abnormalities: A phenomenological study. Journal of Pediatric Nursing: Nursing Care of Children and Families, 62, e164–e169. https://doi.org/10.1016/j.pedn.2021.09.016
  17. Ministry of National Development Planning of Indonesia. (2020). Statistical Disadvantaged Regions. Ministry of National Development Planning of Indonesia. https://simreg.bappenas.go.id/home/daerahtertinggal
  18. Nahar, N., Begum, F., & Fatema, N. N. (2020). Novel facial characteristics in Congenital Rubella Syndrome: A study of 115 cases in a cardiac hospital of Bangladesh. BMJ Paediatrics Open, 4(1). https://doi.org/10.1136/bmjpo-2020-000860
  19. Nayeri, N. D., Roddehghan, Z., Mahmoodi, F., & Mahmoodi, P. (2021). Being parent of a child with congenital heart disease, what does it mean? A qualitative research. BMC Psychology, 9(1), 1–8. https://doi.org/https://doi.org/10.1186/s40359-021-00539-0
  20. Rizkianti, A., Saptarini, I., & Rachmalina, R. (2021). Perceived barriers in accessing health care and the risk of pregnancy complications in Indonesia. International Journal of Women’s Health, 13, 761. https://doi.org/10.2147/ijwh.s310850
  21. Rizvi, S. S., Douglas, R., Williams, O. D., & Hill, P. S. (2020). The political economy of universal health coverage: A systematic narrative review. Health Policy and Planning, 35(3), 364–372. https://doi.org/10.1093/heapol/czz171
  22. Robbers, G. M. L., Bennett, L. R., Spagnoletti, B. R. M., & Wilopo, S. A. (2021). Facilitators and barriers for the delivery and uptake of cervical cancer screening in Indonesia: A scoping review. Global Health Action, 14(1). https://doi.org/10.1080/16549716.2021.1979280
  23. Roddy, Á. (2022). Income and conversion handicaps: Estimating the impact of child chronic illness/disability on family income and the extra cost of child chronic illness/child disability in Ireland using a standard of living approach. European Journal of Health Economics, 23(3), 467–483. https://doi.org/https://doi.org/10.1007/s10198-021-01371-4
  24. Roser, K., Erdmann, F., Michel, G., Winther, J. F., & Mader, L. (2019). The impact of childhood cancer on parents’ socioeconomic situation: A systematic review. Psycho-Oncology, 28(6), 1207–1226. https://doi.org/10.1002/pon.5088
  25. Ruru, Y., Matasik, M., Oktavian, A., Senyorita, R., Mirino, Y., Tarigan, L. H., van der Werf, M. J., Tiemersma, E., & Alisjahbana, B. (2018). Factors associated with nonadherence during tuberculosis treatment among patients treated with DOTS strategy in Jayapura, Papua Province, Indonesia. Global Health Action, 11(1), 1510592. https://doi.org/10.1080/16549716.2018.1510592
  26. Sanders, C. (2014). Application of Colaizzi’s method: Interpretation of an auditable decision trail by a novice researcher. Contemporary Nurse, 14(3), 292–302. https://doi.org/https://doi.org/10.5172/conu.14.3.292
  27. Saraswati, R. (2019). Shame and Indonesian women victims of domestic violence in making the decision to divorce. Identities Global Studies in Culture and Power, 27(5), 557–573. https://doi.org/10.1080/1070289X.2019.1600313
  28. Spinelli, M., Lionetti, F., Pastore, M., & Fasolo, M. (2020). Parents’ stress and children’s psychological problems in families facing the COVID-19 outbreak in Italy. Frontiers in Psychology, 11, 1713. https://doi.org/10.3389/fpsyg.2020.01713/bibtex
  29. Sukmawan, S., & Sahiruddin, S. (2021). Tradition responsive approach as non-medical treatment in mitigating the Covid-19 pandemic in Tengger, East Java, Indonesia. Prosiding 1st International Seminar on Cultural Sciences, ISCS 2020. https://doi.org/10.4108/EAI.4-11-2020.2308894
  30. Tan, R. J. D., & Leon, L. P. (2023). The cost of managing Congenital Rubella Syndrome in a tertiary government hospital in Northern Luzon, Philippines. Acta Medica Philippina, 57(1), 41–46. https://doi.org/10.47895/amp.vi0.4066
  31. Taye, M. (2021). Parents’ perceived knowledge and beliefs on congenital malformations and their causes in the Amhara Region, Ethiopia: A qualitative study. Plos One, 16(11), e0257846. https://doi.org/10.1371/journal.pone.0257846
  32. Toledano-Toledano, F., & Domínguez-Guedea, M. T. (2019). Psychosocial factors related with caregiver burden among families of children with chronic conditions. BioPsychoSocial Medicine, 13(1), 1–9. https://doi.org/10.1186/S13030-019-0147-2/tables/4
  33. Tosi, M., & Albertini, M. (2019). Does children’s union dissolution hurt elderly parents? linked lives, divorce and mental health in Europe. European Journal of Population, 35(4), 695–717. https://doi.org/10.1007/S10680-018-9501-5/tables/4
  34. Tristiana, R. D., Yusuf, A., Fitryasari, R., Wahyuni, S. D., & Nihayati, H. E. (2018). Perceived barriers on mental health services by the family of patients with mental illness. International Journal of Nursing Sciences, 5(1), 63–67. https://doi.org/10.1016/J.IJNSS.2017.12.003
  35. Webster, M. (2019). The cycle of uncertainty: Parents’ experiences of childhood epilepsy. Sociology of Health & Illness, 41(2), 205–218. https://doi.org/10.1111/1467-9566.12815
  36. Wenang, S., Schaefers, J., Afdal, A., Gufron, A., Geyer, S., Dewanto, I., & Haier, J. (2021). Availability and accessibility of primary care for the remote, rural, and poor population of Indonesia. Frontiers in Public Health, 9, 1285. https://doi.org/10.3389/fpubh.2021.721886/bibtex
  37. Wondimeneh, Y., Tiruneh, M., Ferede, G., Denekew, K., Admassu, F., & Tessema, B. (2018). Hospital based surveillance of congenital rubella syndrome cases in the prevaccine era in Amhara Regional State, Ethiopia: A base line information for the country. Plos One, 13(11), e0207095. https://doi.org/10.1371/journal.pone.0207095
  38. World Health Organization. (2021, 13 July). Congenital Rubella Syndrome Reported Cases by WHO Region. World Health Organization; World Health Organization. https://apps.who.int/gho/data/view.main.1520_55?lang=en
  39. Wray, J., Brown, K., Tregay, J., Crowe, S., Knowles, R., Bull, K., & Gibson, F. (2018). Parents’ experiences of caring for their child at the time of discharge after cardiac surgery and during the postdischarge period: Qualitative study using an online forum. Journal of Medical Internet Research, 20(5). https://doi.org/10.2196/jmir.9104
  40. Wulandari, R. D., Laksono, A. D., Nantabah, Z. K., Rohmah, N., & Zuardin, Z. (2022). Hospital utilization in Indonesia in 2018: Do urban rural disparities exist? BMC Health Services Research, 22(1), 1–11. https://doi.org/10.1186/S12913-022-07896-5/tables/3
  41. Yin, Q., Shang, Z., Zhou, N., Wu, L., Liu, G., Yu, X., Zhang, H., Xue, H., & Liu, W. (2018). An investigation of physical and mental health consequences among Chinese parents who lost their only child. BMC Psychiatry, 18(1), 1–6. https://doi.org/https://doi.org/10.1186/s12888-018-1621-2

Last update:

No citation recorded.

Last update: 2024-11-20 11:26:37

No citation recorded.