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

Petrus Kanisius Siga Tage; Herliana Monika Azi Djogo; Erna Febriyanti; Yulia Martiningsih Karmila Letor; Maria Yoanita Bina; Maria Yasintha Goa Goa; Angela Muryanti Gatum

doi:10.14710/nmjn.v13i1.50633

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

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

*Petrus Kanisius Siga Tage

- Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

Herliana Monika Azi Djogo

- Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

Erna Febriyanti

- Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

Yulia Martiningsih Karmila Letor

- Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

Maria Yoanita Bina

- Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

Maria Yasintha Goa Goa

- Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

Angela Muryanti Gatum - Departement of Nursing, Health Sciences Faculty, Universitas Citra Bangsa, Indonesia

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

BibTex Citation Data :

@article{NMJN50633,
    author = {Petrus Siga Tage and Herliana Azi Djogo and Erna Febriyanti and Yulia Letor and Maria Bina and Maria Goa and Angela Gatum},
    title = {Parents’ Experiences of Caring for Children with Congenital Rubella Syndrome (CRS) in Remote and Rural Areas of Indonesia},
    journal = {Nurse Media Journal of Nursing},
  volume = {13},
    number = {1},
    year = {2023},
    keywords = {Caring; congenital; parents; remote; Rubella syndrome},
    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.},
   issn = {2406-8799},   pages = {56--67}  doi = {10.14710/nmjn.v13i1.50633},
    url = {https://ejournal.undip.ac.id/index.php/medianers/article/view/50633}
}

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:

Article Info

Section: Articles

Language : EN

In Vol 13, No 1 (2023): (April 2023)

Recent articles

Women’s Knowledge of Sexually Transmitted Diseases in Telafer City, Iraq The Prevalence of Nurses’ Emotional Exhaustion during COVID-19 Pandemic: A Systematic Review and Meta-Analysis Effects of Patient and Family-Centered Care on Quality of Care in Pediatric Patients: A Systematic Review Editorial Front Matter Editorial Back Matter More recent articles

Most cited articles

Motivation among Indonesian Nurses in Pursuing Continuing Professional Education and Its Relationship to Their Competencies Effects of Family Empowerment on Increasing Family Support in Patients with Type-2 Diabetes Mellitus The Lived Experiences of the Lombok Earthquake Survivors STUDI FENOMENOLOGI: PENGALAMAN MENYUSUI EKSKLUSIF IBU BEKERJA DI WILAYAH KENDAL JAWA TENGAH BSE Practice and BSE Self-Efficacy among Nursing Students in Aceh, Indonesia More cited articles

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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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
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: 2024-07-17 01:05:41

No citation recorded.

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Journal Author(s) Rights

In order for the Department of Nursing, Faculty of Medicine, Universitas Diponegoro to publish and disseminate research articles, we need non-exclusive publishing rights (transferred from the author(s) to the publisher). This is determined by a publishing agreement between the author(s) and the Department of Nursing, Faculty of Medicine, Universitas Diponegoro. This agreement involves the transfer or licensing of the copyright for publishing to the publisher, while authors still retain significant rights to use and share their own published articles. The Department of Nursing, Faculty of Medicine, Universitas Diponegoro supports the need for authors to share, disseminate, and maximize the impact of their research through these rights in any databases.

As the author(s), you have rights to a wide range of uses of your article, including use by your employing institution or company. These author rights can be exercised without the need to obtain specific permission. Authors publishing in the Nurse Media Journal of Nursing have extensive rights to use their works for teaching and scholarly purposes without needing to seek permission, including:

use for classroom teaching by the author or the author’s institution and presentation at a meeting or conference, including distributing copies to attendees;
use for internal training by the author’s company;
distribution to colleagues for their research use;
use in a subsequent compilation of the author’s works;
inclusion in a thesis or dissertation;
reuse of portions or extracts from the article in other works (with full acknowledgment of the final article);
preparation of derivative works (other than for commercial purposes) (with full acknowledgment of the final article);
voluntary posting on open websites operated by the author or the author’s institution for scholarly purposes;

following the open access license of the Creative Commons CC BY-SA License.

Authors, readers, and third parties can copy and redistribute the material in any medium or format, as well as remix, transform, and build upon the material for any purpose, even commercially, but they must give appropriate credit (including the name of the creator and attribution parties, detailed information about the authors, a copyright notice, an open access license notice, a disclaimer notice, and a link to the material), provide a link to the license, and indicate if changes were made. The publisher will indicate any modification of the material (if any) and retain an indication of previous modifications using a CrossMark Policy and information about Erratum-Corrigendum notifications.

Authors, readers, and third parties can read, print, and download, redistribute or republish the article (e.g., display it in a repository), translate the article, download it for text and data mining purposes, reuse portions or extracts from the article in other works, sell or reuse it for commercial purposes, remix, transform, or build upon the material. They must distribute their contributions under the same license as the original Creative Commons Attribution-ShareAlike (CC BY-SA).

Copyright Transfer Agreement for Publishing (Publishing Right)

The Authors submitting a manuscript do so on the understanding that if accepted for publication, non-exclusive right for publishing (publishing right) of the article shall be assigned/transferred to Publisher of the Nurse Media Journal of Nursing (Department of Nursing, Faculty of Medicine, Universitas Diponegoro).

Upon acceptance of an article, authors will be asked to complete a 'Copyright Transfer Agreement for Publishing (CTAP)'. An e-mail will be sent to the Corresponding Author confirming receipt of the manuscript together with a 'Copyright Transfer Agreement for Publishing' form by online version of this agreement.

Nurse Media Journal of Nursing and Department of Nursing, Faculty of Medicine, Universitas Diponegoro, the Editors and the Editorial Board make every effort to ensure that no wrong or misleading data, opinions or statements be published in the journal. In any way, the contents of the articles and advertisements published in the Nurse Media Journal of Nursing are sole and exclusive responsibility of their respective authors and advertisers.

Please note that even though we ask for a transfer of copyright for publishing (CTAP), our journal Author(s) retain (or are granted back) significant scholarly rights as mentioned before.

The Copyright Transfer Agreement for Publishing (CTAP) Form can be downloaded here: [Copyright Transfer Agreement for Publishing (CTAP) Form NMJN 2024]

The copyright form should be signed electronically and send to the Editorial Office in the form of original e-mail below:

Dr. Meira Erawati (Editor-in-Chief)
Editorial Office of Nurse Media Journal of Nursing
Department of Nursing, Faculty of Medicine, Universitas Diponegoro
Jl. Prof. Soedarto, Tembalang, Semarang, Central Java, Indonesia 50275
Telp.: +62-24-76480919; Fax.: +62-24-76486849
E-mail: media_ners@live.undip.ac.id

(This policy statements has been updated at 24th January 2024)

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

Journal Author(s) Rights

Copyright Transfer Agreement for Publishing (Publishing Right)

OFFICE INFORMATION