Beyond the Skin: Stigma, School Refusal, and Psychosocial Distress in a Child with Multibacillary Leprosy from a Primary Care Perspective

Elfrida Noor Auliya; Nanda  Lilian

doi:10.58344/ihj.v5i3.951

Authors

Elfrida Noor Auliya Unipdu Medika Hospital
Nanda Lilian Geger Public Health Center

DOI:

https://doi.org/10.58344/ihj.v5i3.951

Keywords:

childhood leprosy, stigma, school refusal, quality of life, psychosocial distress

Abstract

Childhood leprosy can cause substantial psychosocial distress, particularly when visible skin lesions expose affected children to stigma, discrimination, and peer rejection. However, emotional difficulties and disruptions in school participation may remain unrecognized during routine clinical management. This case report aimed to describe the psychosocial and functional burden associated with facial lesions in a child with multibacillary leprosy from a primary care perspective. A descriptive assessment was conducted in a 10-year-old girl using clinical histories obtained from the patient and her mother, available medical records, the Strengths and Difficulties Questionnaire (SDQ), and the KUKUH quality-of-life questionnaire. The findings were interpreted descriptively without establishing a formal psychiatric diagnosis. The patient had experienced a visible cheek lesion for approximately 18 months, accompanied by feelings of shame, peer teasing, school refusal lasting two weeks, social withdrawal, and decreased appetite. SDQ responses indicated emotional symptoms and peer relationship difficulties, while prosocial behavior remained relatively preserved. The quality-of-life assessment revealed worry, embarrassment, perceived social rejection, and interference with daily activities, school participation, and interpersonal relationships. These findings suggested that psychosocial distress and functional impairment accompanied the visible skin lesion and negative peer experiences. Although clinical photographs documented changes in the lesion after five months of multidrug therapy (MDT), psychosocial outcomes were not reassessed during follow-up. This case highlights the importance of integrating psychosocial screening, family-centered support, school-based coordination, and stigma-reduction interventions into pediatric leprosy management alongside appropriate medical treatment to address the emotional, social, and functional needs of affected children.

References

Abdul Rahman, N., Rajaratnam, V., Burchell, G. L., Peters, R. M. H., & Zweekhorst, M. B. M. (2022). Experiences of living with leprosy: A systematic review and qualitative evidence synthesis. PLOS Neglected Tropical Diseases, 16(10), Article e0010761. https://doi.org/10.1371/journal.pntd.0010761

Adriono, G. A., Rahayu, T., Menaldi, S. L. S. W., Nelfidayani, N., Wardani, R. S., Gibran, K., Yunifananda, M. S., Putri, K. Q., & Irawati, Y. (2026). Exploring pediatric leprosy in an endemic area: Case series of eight patients in Indonesia. Journal of General-Procedural Dermatology & Venereology Indonesia, 10(1), 6. https://doi.org/10.7454/jdvi.v10i1.1237

Ahmad, S. (2023). Socio-psychological issues of adolescents affected with leprosy: A scoping review. Indian Journal of Leprosy, 95, 121–129.

Chen, K. H., Lin, C. Y., Su, S. B., & Chen, K. T. (2022). Leprosy: A review of epidemiology, clinical diagnosis, and management. Journal of Tropical Medicine, 2022, Article 8652062. https://doi.org/10.1155/2022/8652062

Fonseca, A. M. F. de A., Rosa, P. S., Belone, A. de F. F., Soares, C. T., Bertoluci, D. de F. F., Diório, S. M., Fachin, L. R. V., do Carmo, R. F., & de Almeida Neto, F. B. (2025). Therapeutic failure of multidrug therapy for leprosy: A retrospective case series in a hyperendemic Brazilian City. PLOS Neglected Tropical Diseases, 19(11), e0013616.

Franco-Paredes, C., Garcia-Creighton, E., Henao-Martínez, A., Kallgren, D. L., Banjade, R., Dyer, J. A., Nelson, T., Zaesim, A., Peluso, M. J., & Jain, V. (2022). Novel approaches in the treatment of Hansen’s disease (Leprosy): a case series of multidrug therapy of monthly rifampin, moxifloxacin, and minocycline (RMM) in the United States. Therapeutic Advances in Infectious Disease, 9, 20499361221135884.

Higuita, N. I. A., Avanzi, C., Henao-Martínez, A. F., Honap, T. P., Bendera, N., Franco-Paredes, C., Yotsu, R. R., Rakotoarisaona, M., Manimozhi, N., & Spencer, J. S. (2026). Leprosy, also known as Hansen’s disease, is a curable granulomatous condition caused by Mycobacterium leprae or Mycobacterium lepromatosis, disproportionately affecting impoverished communities across the globe. The bacteria’s tropism for dermal histiocytes, endothelial cells, and Schwann cells causes neuronal and dermal damage that often results in disability, permanent disfigurement, stigma, and social exclusion. Despite important achievements in the understanding of the disease, its elimination has been hampered by the scarcity of sensitive diagnostic tools, sub. Lancet, 407, 805–819.

Gilmore, A., Roller, J., & Dyer, J. A. (2023). Leprosy (Hansen’s disease): An update and review. Missouri Medicine, 120(1), 39–44.

Goh, G. C. C., Mujin, S. M., Kunasagran, P. D., Ahmad, M. H., Anwar, K. N., Omar, A., Avoi, R., Syed Abdul Rahim, S. S., Robinson, F., & Atil, A. (2024). Leprosy stigma post elimination era: A systematic review. Malaysian Journal of Medicine and Health Sciences, 20.

Hofstraat, K., & van Brakel, W. H. (2016). Social stigma towards neglected tropical diseases: A systematic review. International Health, 8(Suppl. 1), i53–i70. https://doi.org/10.1093/inthealth/ihv071

Lusli, M., Peters, R., Bunders, J., Irwanto, I., & Zweekhorst, M. (2017). Development of a rights-based counselling practice and module to reduce leprosy-related stigma and empower people affected by leprosy in Cirebon District, Indonesia. Leprosy Review, 88(3), 318–333. https://doi.org/10.47276/lr.88.3.318

Lusli, M., Peters, R., van Brakel, W., Zweekhorst, M., Iancu, S., Bunders, J., Irwanto, & Regeer, B. (2016). The impact of a rights-based counselling intervention to reduce stigma in people affected by leprosy in Indonesia. PLOS Neglected Tropical Diseases, 10(12), Article e0005088. https://doi.org/10.1371/journal.pntd.0005088

Marpaung, Y. M., Ernawati, E., & Dwivania, A. T. (2022). Stigma towards leprosy across seven life domains in Indonesia: A qualitative systematic review. BMJ Open, 12(11), Article e062372. https://doi.org/10.1136/bmjopen-2022-062372

Paller, A. S., Rangel, S. M., Chamlin, S. L., Hajek, A., Phan, S., Hogeling, M., Castelo-Soccio, L., Lara-Corrales, I., Arkin, L., Lawley, L. P., Funk, T., Castro Porto Silva Lopes, F., Antaya, R. J., Ramien, M. L., Vivar, K. L., Teng, J., Coughlin, C. C., Rehmus, W., Gupta, D., . . . Griffith, J. W. (2024). Stigmatization and mental health impact of chronic pediatric skin disorders. JAMA Dermatology, 160(6), 621–630. https://doi.org/10.1001/jamadermatol.2024.0594

Parga, A. D., & Liska, T. M. (2025). Stigma, bullying, and resilience: Psychosocial outcomes in marginalized adolescents with visible dermatologic conditions. Cureus, 17(6), Article e86171. https://doi.org/10.7759/cureus.86171

Rafferty, J. (2005). Curing the stigma of leprosy. Leprosy Review, 76(2), 119–126. https://doi.org/10.47276/lr.76.2.119

Samosir, P. M., Axelia, P. G., Alkaff, F. F., Salamah, S., & Alinda, M. D. (2023). Prevalence and risk factors for disability in leprosy patients in Indonesia during the post-elimination era. Dermatology Reports, Article 9777. https://doi.org/10.4081/dr.2023.9777

Sharma, P., Shakya, R., Singh, S., Bhandari, A., Amatya, A., Joshi, C., & Gurung, G. (2022). Prevalence of anxiety and depression among people living with leprosy and its relationship with leprosy-related stigma. Indian Journal of Dermatology, 67(6), 693–698.

Somar, P., Waltz, M. M., & van Brakel, W. H. (2020). The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members – A systematic review. Global Mental Health, 7, Article e15. https://doi.org/10.1017/gmh.2020.3

van Brakel, W. H., Sihombing, B., Djarir, H., Beise, K., Kusumawardhani, L., Yulihane, R., Kurniasari, I., Kasim, M., Kesumaningsih, K. I., & Wilder-Smith, A. (2012). Disability in people affected by leprosy: The role of impairment, activity, social participation, stigma and discrimination. Global Health Action, 5(1), Article 18394. https://doi.org/10.3402/gha.v5i0.18394

van Dorst, M. M. A. R., van Netten, W. J., Waltz, M. M., Pandey, B. D., Choudhary, R., & van Brakel, W. H. (2020). Depression and mental wellbeing in people affected by leprosy in southern Nepal. Global Health Action, 13(1), Article 1815275. https://doi.org/10.1080/16549716.2020.1815275

Vieira, M. C. A., Teixeira, M. G. L. C., da Silva, L. A. V., Mistura, C., Sarmento, S. S., & Mascarenhas, A. A. (2022). Effects on the daily lives of children and teenagers who lived with leprosy. Saúde em Debate, 46(spe6), 124–134. https://doi.org/10.1590/0103-11042022e611i

Willis, M., Fastenau, A., Penna, S., & Klabbers, G. (2024). Interventions to reduce leprosy related stigma: A systematic review. PLOS Global Public Health, 4(8), Article e0003440. https://doi.org/10.1371/journal.pgph.0003440

World Health Organization. (2025). Global leprosy (Hansen disease) update, 2024: Beyond zero cases – What elimination of leprosy really means. Weekly Epidemiological Record, 100(37), 365–384.