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Leprosy a Life Changing Experience to Live Ostracized: Psychological Issues and Well-Being

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Abstract

Leprosy is an ancient disease, public health issue even today. The disease caused by bacteria typically has a slow onset. It impacts the peripheral nervous system leading to visible deformities of limbs, facial muscles. With high disabilities, it imposes serious functional restrictions. Leprosy is absolutely curable, and the National Leprosy Eradication Program started in 1983, yet the infection is increasing in India. The social stigma attached to it imposes serious restriction that limits their developmental opportunities and force to a dehumanized living condition. India has eliminated leprosy in 2005, yet there are more than 1000 leprosy colonies, where people are living being excluded, ostracized with deprivation and poverty, dependent on begging or meager livelihood activities. The detection of the disease itself becomes an existential crisis that impacts the overall well-being as the subsequent life course becomes highly stressful and emotionally exhaustive with combinations of negative life events. Leprosy affected persons require medical attention and treatment for lifelong. The leprosy colonies in India at present have a history of origin linked to the leprosy hospitals where the patients were admitted for treatment and deserted by families. After discharge, they started living in and around without much rehabilitation planning and support from any authority. While begging becomes a survival strategy many of them entered family life and their offspring continue to live with similar realities. An international organization working in the colonies across India was visited by the author and the chapter reflected the realities from the ground through various narratives and case stories. The dehumanizing experiences, marginalization, and the diseased identity caused a lot of mental health issues that require constant multidimensional support. There are complex psychosocial issues among leprosy affected persons that require focused, systematic planning and long-term intervention for sustainable development, empowerment, human rights fulfillment, and enhancing capability to facilitate well-being.

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Notes

  1. 1.

    https://silf.in/

  2. 2.

    http://www.apalindia.in/

References

  • Bakare, A. T., Yusuf, A. J., Habib, Z. G., & Obembe, A. (2015). Anxiety and depression: A study of people with leprosy in Sokoto, North-Western Nigeria. Journal of Psychiatry,S1(004), 2–7.

    Google Scholar 

  • Barker, R. L. (2003). The social work dictionary (5th ed.). National Association of Social Worker.

    Google Scholar 

  • Becker, G. (1964). Human capital. Columbia University Press.

    Google Scholar 

  • Behera, P. B. (1981). Psychological reactions to leprosy. Leprosy in India,53(2), 266–272.

    Google Scholar 

  • Bhadra, S. (2013). Community-based psychosocial support program for resiliency building in Tsunami rehabilitation of Kanyakumari District. Journal of Social Work Special Issue on Building Resilient Communities: Communitarian Social Work,3(8), 66–86.

    Google Scholar 

  • Bhatia, M. S., Chandra, R., Bhattacharya, S. N., & Imran, M. (2006). Psychiatric morbidity and pattern of dysfunctions in patients with leprosy. Indian Journal of Dermatology,51(1), 23–25.

    Article  Google Scholar 

  • Central Leprosy Division. (2017). National Leprosy Eradication Programme, Annual report-2016–17 (Directorate General of Health Services), Ministry of Health and Family Welfare, Government of India.

    Google Scholar 

  • Coppola, M., Eeden, V. D., Robbins, N., Wilson, L., Franken, K., Adams, L., et al. (2018). Vaccines for Leprosy and Tuberculosis: Opportunities for shared research, development, and application. Frontiers in Immunology, 9(3), 308–311.

    Google Scholar 

  • DGHS. (2017, June 21). Director General of Health Services, MoHFW, Govt. of India. Retrieved May 24, 2020, from National Leprosy Eradication Programme: https://dghs.gov.in/content/1349_3_NationalLeprosyEradicationProgramme.aspx

  • Ghosh, S., & Chaudhuri, S. (2015). Chronicles of Gerhard-Henrik Armauer Hansen’s life and work. Indian Journal of Dermatology,60(3), 219–221.

    Article  Google Scholar 

  • Global Partnership for Zero Leprosy. (2019, March 22). Charter. Retrieved July 28, 2020, from Global Partnership for Zero Leprosy: https://zeroleprosy.org/wp-content/uploads/2019/04/Global-Partnership-for-Zero-Leprosy-Charter-Final-March-22-2019.pdf

  • Hansen, P. (2008). In W. Agen (Ed.), Psychosocial interventions a handbook. Copenhagen: International Federation Reference Centre, for Psychosocial Support.

    Google Scholar 

  • Holmes, T. H., & Rahe, R. H. (1967). The social readjustment rating scale. Journal of Psychosomatic Research,11(3), 213–218.

    Article  Google Scholar 

  • Hutchison, E. D. (2015). A life course perspective. In E. D. Hutchison (Ed.), Dimensions of human behavior: person and environment (5th ed., pp. 1–37). Sage.

    Google Scholar 

  • International Federation Reference Centre. (2009). Community-based psychosocial support: Participant’s book. Copenhagen: International Federation of Red Cross and Red Crescent Societies Reference Centre for Psychosocial Support.

    Google Scholar 

  • Jacob, J. T., & Franco-Paredes, C. (2008). The stigmatization of leprosy in India and its impact on future approaches to elimination and control. Plos Neglected Tropical Diseases,2(1), 113–115.

    Article  Google Scholar 

  • Mahajan, B., Garg, G., & Gupta, R. (2007). A study of behavioural changes and clinical evaluation of leprosy in school going children of leprosy parents. Indian Journal of Dermatology Venereology and Leprology,68(5), 279–280.

    Google Scholar 

  • Medicus Mundi Schweiz. (2015, September 10). Stigma—A special problem of NTDs. MMS Bulletin, 133, 2–6.

    Google Scholar 

  • Narain, J. P. (2016, April–June). Public health challenges in India: Seizing opportunities. Indian Journal of Community Medicine, 41(2), 85–88.

    Google Scholar 

  • NIHFW. (2014, March 23). National Leprosy Eradication Program. Retrieved May 15, 2020, from National Institute of Health and Family Welfare: http://www.nihfw.org/NationalHealthProgramme/NATIONALLEPROSYERADICATIONPROGRAMME.html

  • Noriega, L. F., Chiacchio, N. D., Noriega, A. F., Pereira, G. A., & Vieira, M. L. (2016). Leprosy: Ancient disease remains a public health problem nowadays. Anais Brasileiros De Dermatologia,91(4), 547–548.

    Article  Google Scholar 

  • Novick, L. F., & Morrow, C. B. (2008). Defining public health: Historical and contemporary development. Jones & Bartlett.

    Google Scholar 

  • Nussbaum, M. (2011). Creating capabilities: The human development approach. Harvard University Press.

    Book  Google Scholar 

  • Putnam, R. D. (2000). Bowling alone: The collapse and revival of American community. Simon & Schuster.

    Google Scholar 

  • Rao, N., & Suneetha, S. (2018). Current situation of leprosy in India and its future implications. Indian Dermatology Online Journal,9(2), 83–89.

    Article  Google Scholar 

  • Rocha-Leite, C. I., Borges-Oliveira, R., Araújo-de-Freitas, L., Machado, P. R., & Quarantini, L. C. (2014). Mental disorders in leprosy: an underdiagnosed and untreated population. Journal of Psychosomatic Research, 76(5), 422–425.

    Google Scholar 

  • Saleebey, D. (1997). The strengths perspective in social work practice (2nd ed.). Longman.

    Google Scholar 

  • Sasakawa Health Foundation. (2016, January 28). History of leprosy. Retrieved May 15, 2020, from International Leprosy Association—History of Leprosy: https://leprosyhistory.org/

  • Scollard, D. M., & Gillis, T. P. (2018). International textbook of leprosy. Greenville: American Leprosy Mission

    Google Scholar 

  • Sen, A. K. (1997). Distinguished guest lecture: From income inequality to economic inequality. Southern Economic Journal,64(2), 384–402.

    Article  Google Scholar 

  • Sen, A. K. (1999). Development as freedom. Oxford University Press.

    Google Scholar 

  • SILF. (2011, January 30). Association of people affected by leprosy. Retrieved July 13, 2020, from Sasakawa India Leprosy Foundation: https://silf.in/apal/

  • Singh, P. K. (2017, January 27). Scale up efforts against leprosy; focus on preventing disabilities in children. Retrieved July 27, 2020, from World Health Organization: https://www.who.int/southeastasia/news/detail/27-01-2017-scale-up-efforts-against-leprosy-focus-on-preventing-disabilities-in-children

  • Stanford. (2018, March 15). History of Leprosy. Retrieved May 15, 2020, from stanford education: https://web.stanford.edu/class/humbio103/ParaSites2005/Leprosy/history.htm

  • Stangor, C., & Crandall, C. S. (2000). Threat and the social construction of stigma. In T. F. Heatherton, R. E. Kleck, M. R. Hebl, & J. G. Hull (Eds.), The social psychology of stigma (pp. 62–87). Guilford Press.

    Google Scholar 

  • The Psychosocial Working Group. (October, 2003). Psychosocial intervention in complex emergencies: A conceptual framework. Edinburgh: Psychosocial Working Group.

    Google Scholar 

  • Tiwari, A., Blok, D. J., Suryawanshi, P., Raikwar, A., Arif, M., & Richardus, J. H. (2019). Leprosy services in primary health care in India: Comparative economic cost analysis of two public-health settings. Tropical Medicine and International Health,24(2), 155–165.

    Article  Google Scholar 

  • Vongsathorn, K. (2012). Gnawing pains, festering ulcers, and nightmare suffering: Selling leprosy as a humanitarian cause in the British Empire, c. 1890–1960. Journal of Imperial and Commonwealth History, 40(5), 863–878.

    Google Scholar 

  • Weiss, M. (2008). Stigma and the social burden of neglected tropical diseases. PLOS Neglected Tropical Diseases, 2(e), 237–243.

    Google Scholar 

  • Wethington, E. (2005). An overview of the life course perspective: Implications for health and nutrition. Journal of Nutrition Education and Behavior,37(3), 115–119.

    Article  Google Scholar 

  • WHO. (2000). A life course approach to health. World health organization-International longevity Center.

    Google Scholar 

  • WHO. (2009). Enhanced global strategy for further reducing the disease burden due to leprosy (plan period: 2011–2015). World Health Organization.

    Google Scholar 

  • WHO. (2014). Global leprosy update, 2013; reducing disease burden. Weekly Epidemiological Record,89, 389–400.

    Google Scholar 

  • WHO. (2015, March 5). Neglected tropical diseases. Retrieved May 14, 2020, from World Health Organization: https://onlinelibrary.wiley.com/doi/epdf/10.1111/tmi.13345

  • WHO. (2016, August 1). Leprosy elimination. Retrieved May 24, 2020, from The Global Leprosy Strategy: https://www.who.int/lep/strategy/en/

  • WHO. (2018a). Global leprosy update, 2017: Reducing the disease burden due to leprosy. Weekly Epidemiological Records,93(51), 445–456.

    Google Scholar 

  • WHO. (2018b, June 21). Leprosy elimination. Retrieved July 28, 2020, from International Federation of Anti-Leprosy Associations (ILEP): https://www.who.int/lep/partners/ilep/en/#:~:text=Links%20and%20resources-,International%20Federation%20of%20Anti%2DLeprosy%20Associations%20(ILEP),on%20leprosy%20research%20per%20year.

  • WHO. (2018c). The life-course approach: From theory to practice. Case stories from two small countries of Europe. Castello, Italy: World Health Organization.

    Google Scholar 

  • WHO. (2019a, August 30). Global leprosy update, 2018: Moving towards a leprosy-free world. Weekly Epidemiological Record, 94(35/36), 389–412.

    Google Scholar 

  • WHO. (2019b, September 9). Leprosy: New data show steady decline in new cases. Retrieved May 15, 2020, from Neglected tropical diseases: https://www.who.int/neglected_diseases/news/Leprosy-new-data-show-steady-decline-in-new-cases/en/

  • Zastrow, C. H. (2010). Evaluating social work practice. New Delhi: Cengage Learning, India Edition.

    Google Scholar 

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Acknowledgements

I deeply convey my sincere gratitude to CEO, SILF (Sasakawa India Leprosy Foundation), and her dedicated team for the opportunity to work on the consultancy project. I also express my sincere thanks to all the beneficiaries of the livelihood project of SILF, leaders of APAL for giving me enough time to interact and understand their issues, feelings, resources, and experiences of their life. The field visits were conducted during March 2015 to December 2017. I am thankful to authorities of Central University of Rajasthan, for giving me the opportunity to work on the last phase of the consultancy project.

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Authors and Affiliations

  1. Department of Social Work, Central University of Rajasthan, Ajmer, Rajasthan, India

    Subhasis Bhadra

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  1. Subhasis Bhadra
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  1. Sriperumbudur, Tamil Nadu, India

    Sibnath Deb

  2. Florida, FL, USA

    Brian A. Gerrard

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Bhadra, S. (2022). Leprosy a Life Changing Experience to Live Ostracized: Psychological Issues and Well-Being. In: Deb, S., Gerrard, B.A. (eds) Handbook of Health and Well-Being. Springer, Singapore. https://doi.org/10.1007/978-981-16-8263-6_3

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