The Concepts of Health and Illness of Children Living with HIV in Jakarta, Indonesia: Implications for Future Programs

Catherine Thomas; Irwanto; Weny Savitry Sembiring; Hana Panggabean; Rustono Farady Marta

doi:10.24854/jps.v12i2.4696

Authors

Catherine Thomas University of Jakarta International
Irwanto Universitas Katolik Indonesia Atma Jaya
Weny Savitry Sembiring Universitas Katolik Indonesia Atma Jaya
Hana Panggabean Universitas Katolik Indonesia Atma Jaya
Rustono Farady Marta Universitas Satya Negara Indonesia

https://doi.org/10.24854/jps.v12i2.4696

Keywords:

children living with HIV, concept of health, concept of illness, positive health behavior

Abstract

Studies on children’s concepts of health and illness mostly took focus on the views of healthy children. As children living with HIV face different challenges, it is essential to gain more understanding on their views on health and illness. The study used a guided drawing activity followed by a semi-structured interview. Thematic coding was done to analyze of the interview data. There were three categories formed both on the concepts of health and illness: The biomedical, psychosocial, and healthy lifestyle representation. To children living with HIV, the concepts hospitals, hospitalization, medications, doctors, and symptoms of being sick are common to them. Children revealed the emotional fatigue from being regularly sick and hospitalized, being discriminated and having to pay medical bills as consequence of having poor health. On the other hand, children also acknowledged the positive consequences of being healthy (e.g. playing without being discriminated, being able to celebrate the next birthdays). The study concluded that the ongoing health education programs for children with HIV should incorporate the positive consequences of being healthy, instead of focusing heavily on medical-related topics. Having a positive outlook will hopefully motivate these children to adhere to their medications and therefore improve their quality of life.

References

Blom, R. (2006). The Handbook of Gestalt Play Therapy: Practical Guidelines for Child Therapists. Jessica Kingsley Publishers.

Callens, S. F. J., McKellar, M. S., & Colebunders, R. (2008). HIV care and treatment for children in resource-limited settings. Expert Review of Anti-Infective Therapy, 6(2), 181–190. https://doi.org/10.1586/14787210.6.2.181

Fabianova, L. (2011). Psychosocial Aspects of People Living with HIV/AIDS. In G. Letamo (Ed.), Social and Psychological Aspects of HIV/AIDS and their Ramifications. IntechOpen. https://doi.org/10.5772/21148

Giannattasio, A., Officioso, A., Continisio, G. I., Griso, G., Storace, C., Coppini, S., Longhi, D., Mango, C., Guarino, A., Badolato, R., & Pisacane, A. (2011). Psychosocial issues in children and adolescents with HIV infection evaluated with a World Health Organization age-specific descriptor system. Journal of Developmental and Behavioral Pediatrics : JDBP, 32(1), 52–55. https://doi.org/10.1097/DBP.0b013e3181f51907

Israelsson-Skogsberg, Å., Hedén, L., Lindahl, B., & Laakso, K. (2018). ‘I’m almost never sick’: Everyday life experiences of children and young people with home mechanical ventilation. Journal of Child Health Care, 22(1), 6–18. https://doi.org/10.1177/1367493517749328

Kurpas, D., Mroczek, B., Sochocka, L., & Church, J. (2013). School age children with HIV/AIDS: Possible discrimination and attitudes against. Revista Da Escola de Enfermagem, 47(6), 1305–1310. https://doi.org/10.1590/S0080-623420130000600008

Lentera Anak Pelangi. (2024). Lentera Anak Pelangi- About Us. https://www.lenteraanakpelangi.org/

Mburu, G., Hodgson, I., Kalibala, S., Haamujompa, C., Cataldo, F., Lowenthal, E. D., & Ross, D. (2014). Adolescent HIV disclosure in Zambia: Barriers, facilitators and outcomes. Journal of the International AIDS Society, 17. https://doi.org/10.7448/IAS.17.1.18866

Medscape. (2024). Pediatric HIV Infection. https://emedicine.medscape.com/article/965086-overview

Mouratidi, P.-S., Bonoti, F., & Leondari, A. (2016). Children’s perceptions of illness and health: An analysis of drawings. Health Education Journal, 75(4), 434–447. https://doi.org/10.1177/0017896915599416

Neubauer, B. E., Witkop, C. T., & Varpio, L. (2019). How phenomenology can help us learn from the experiences of others. Perspectives on Medical Education, 8, 90–97. https://doi.org/10.1007/s40037-019-0509-2

Savage, J. S., Fisher, J. O., & Birch, L. L. (2007). Parental influence on eating behavior: Conception to adolescence. Journal of Law, Medicine and Ethics, 35(1), 22–34. https://doi.org/10.1111/j.1748-720X.2007.00111.x

Stratton, S. J. (2024). Purposeful Sampling: Advantages and Pitfalls. Prehospital and Disaster Medicine, 39(2), 121–122. https://www.cambridge.org/core/services/aop-cambridge-core/content/view/7915F1727F04A3051245959ACBA61C06/S1049023X24000281a.pdf/purposeful-sampling-advantages-and-pitfalls.pdf

Vranda, M. N., & Mothi, S. N. (2013). Psychosocial Issues of Children Infected with HIV/AIDS. Indian Journal of Psychological Medicine, 35(1), 19–22. https://doi.org/10.4103/0253-7176.112195

Yayasan Spiritia. (2014). Saya Berhak Tahu...dan Saya Berhak Mengungkapkan.

Yayasan Spiritia. (2016). Pahamilah dan Dukunglah Kami: Panduan untuk Pengasuh.