Skip to main content

Psychosocial Aspects of Hansen’s Disease

  • Chapter
  • First Online:
Hansen’s Disease

Abstract

Being diagnosed with Hansen’s disease is often a turning point in an individual’s life. It is often experienced as a major shock, and people may experience a range of negative feelings such as denial, fear, sadness, shame, loss of control, and concerns about the future. If people have visible impairments and/or experience social stigma, this can be difficult to cope with and may negatively affect people’s mental wellbeing. Studies show that depression and anxiety are very common among persons affected. The negative impact on mental health is a long-neglected aspect of leprosy work. The way persons affected adjust depends on personal and environmental factors, but also on the manifestation and severity of the disease. Many people will try to hide their disease or isolate themselves. In addition, while some people find comfort and hope in their faith and spiritual practices, others may lose their faith. Social support plays a vital role in adapting to a life with Hansen’s disease and has a positive impact on people’s mental wellbeing. Interventions aimed at improving people’s mental wellbeing are crucial, given the profound impact the disease can have on this. These include peer or family counselling, individual or group therapy, strengthening social support networks, champions, socioeconomic empowerment, and strengthening resilience.

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 109.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Hardcover Book
USD 139.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

Notes

  1. 1.

    https://www.infontd.org/toolkits/stigma-guides/guide-2-how-reduce-impact-stigma

References

  1. Rao PS. Study on differences and similarities in the concept and origin of leprosy stigma in relation to other health-related stigma. Indian J Lepr. 2010;82:117–21.

    CAS  PubMed  Google Scholar 

  2. Weiss MG, Ramakrishna J, Somma D. Health-related stigma: rethinking concepts and interventions. Psychol Health Med. 2006;11:277–87.

    Article  PubMed  Google Scholar 

  3. Adhikari B, Kaehler N, Raut S, Marahatta SB, Ggyanwali K. Risk factors of stigma related to leprosy-a systematic review. J Manmohan Mem Inst Health Sci. 2013;1:3–11.

    Article  Google Scholar 

  4. Sermrittirong S, van Brakel W. Stigma in leprosy: concepts, causes and determinants. Lepr Rev. 2014;85:36–47.

    Article  PubMed  Google Scholar 

  5. van’t Noordende AT, Lisam S, Ruthindartri P, Sadiq A, Singh V, Arifin M, et al. Leprosy perceptions and knowledge in endemic districts in India and Indonesia: differences and commonalities. PLoS Negl Trop Dis. 2021;15:e0009031.

    Article  Google Scholar 

  6. Heijnders ML. The dynamics of stigma in leprosy. Int J Lepr Other Mycobact Dis. 2004;72:437–47.

    Article  CAS  PubMed  Google Scholar 

  7. Varkevisser CM, Lever P, Alubo O, Burathoki K, Idawani C, Moreira TMA, et al. Gender and leprosy: case studies in Indonesia, Nigeria, Nepal and Brazil. Lepr Rev. 2009;80:65.

    Article  PubMed  Google Scholar 

  8. van’t Noordende AT, da Silva Pereira ZB, Kuipers P. Key sources of strength and resilience for persons receiving services for Hansen’s disease (leprosy) in Porto Velho, Brazil: what can we learn for service development? Int Health. 2021;13(6):527–35.

    Article  Google Scholar 

  9. van Brakel WH. Measuring leprosy stigma-a preliminary review of the leprosy literature. Int J Lepr Other Mycobact Dis. 2003;71:190.

    Article  PubMed  Google Scholar 

  10. Engelbrektsson UB, Subedi M. Stigma and leprosy presentations, Nepal. Lepr Rev. 2018;89:1–8.

    Google Scholar 

  11. Somar P, Waltz M, van Brakel W. The impact of leprosy on the mental wellbeing of leprosy-affected persons and their family members–a systematic review. Glob Ment Health. 2020;7:7. https://doi.org/10.1017/gmh.2020.3.

    Article  Google Scholar 

  12. Moos RH, Schaefer JA. The crisis of physical illness. In: Moos RH, editor. Coping with physical illness. Boston, MA: Springer; 1984. p. 3–25.

    Chapter  Google Scholar 

  13. Peters RMH, Hofker ME, van Brakel WH, Zweekhorst MBM, Seda FSSE, Irwanto I, et al. Narratives around concealment and agency for stigma reduction: a study of women affected by leprosy in Cirebon District, Indonesia. Disabil CBR Inclusive Dev. 2014;25:5–21. https://doi.org/10.5463/DCID.v25i4.389.

    Article  Google Scholar 

  14. Rai SS, Irwanto I, Peters RM, Syurina EV, Putri AI, Mikhakhanova A, et al. Qualitative exploration of experiences and consequences of health-related stigma among Indonesians with HIV, leprosy, schizophrenia and diabetes. Kesmas. 2020;15:7–16.

    Google Scholar 

  15. Adhikari B, Kaehler N, Raut S, Gyanwali K, Chapman RS. Stigma in leprosy: a qualitative study of leprosy affected patients at green pastures hospital, western region of Nepal. J Health Res. 2013;27:295–300.

    Google Scholar 

  16. Stanton AL, Revenson TA. Adjustment to chronic disease: progress and promise in research. Oxford University Press; 2012.

    Google Scholar 

  17. Zhang X, Wang A, Shi T, Zhang J, Xu H, Wang D, et al. The psychosocial adaptation of patients with skin disease: a scoping review. BMC Public Health. 2019;19:1–15.

    Article  Google Scholar 

  18. Suzuki K, Akama T, Kawashima A, Yoshihara A, Yotsu RR, Ishii N. Current status of leprosy: epidemiology, basic science and clinical perspectives. J Dermatol. 2012;39:121–9.

    Article  CAS  PubMed  Google Scholar 

  19. Deps PD, Nasser S, Guerra P, Simon M, Birshner RDC, Rodrigues LC. Adverse effects from multi-drug therapy in leprosy: a Brazilian study. Lepr Rev. 2007;78:216–22.

    Article  PubMed  Google Scholar 

  20. Ebenso B, Fashona A, Ayuba M, Idah M, Adeyemi G, S-Fada S. Impact of socio-economic rehabilitation on leprosy stigma in Northern Nigeria: findings of a retrospective study. Asia Pac Disabil Rehabil J. 2007;18:98–119.

    Google Scholar 

  21. Major B, O’Brien LT. The social psychology of stigma. Annu Rev Psychol. 2005;56:393–421. https://doi.org/10.1146/annurev.psych.56.091103.070137.

    Article  PubMed  Google Scholar 

  22. Barlow J, Wright C, Sheasby J, Turner A, Hainsworth J. Self-management approaches for people with chronic conditions: a review. Patient Educ Couns. 2002;48:177–87.

    Article  PubMed  Google Scholar 

  23. Barrett R. Self-mortification and the stigma of leprosy in northern India. Med Anthropol Q. 2005;19:216–30.

    Article  PubMed  Google Scholar 

  24. van’t Noordende AT, Aycheh MW, Schippers A. The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: a qualitative study in northwest Ethiopia. PLoS Negl Trop Dis. 2020;14:e0008173.

    Article  Google Scholar 

  25. van Dorst MMAR, van Netten WJ, Waltz MM, Pandey BD, Choudhary R, van Brakel WH. Depression and mental wellbeing in people affected by leprosy in southern Nepal. Glob Health Action. 2020;13:1815275. https://doi.org/10.1080/16549716.2020.1815275.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Govindasamy K, Jacob I, Solomon RM, Darlong J. Burden of depression and anxiety among leprosy affected and associated factors—a cross sectional study from India. PLoS Negl Trop Dis. 2021;15:e0009030.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Cross H, Choudhary R. STEP: an intervention to address the issue of stigma related to leprosy in Southern Nepal. Lepr Rev. 2005;76:316–24.

    Article  PubMed  Google Scholar 

  28. Floyd-Richard M, Gurung S. Stigma reduction through group counselling of person s affected by leprosy ± a pilot study. Lepr Rev. 2000;71:499–504.

    CAS  PubMed  Google Scholar 

  29. Stevelink SAM, van Brakel WH, Augustine V. Stigma and social participation in Southern India: differences and commonalities among persons affected by leprosy and persons living with HIV/AIDS. Psychol Health Med. 2011;16:695–707.

    Article  CAS  PubMed  Google Scholar 

  30. Lusli M, Peters R, van Brakel W, Zweekhorst M, Iancu S, Bunders J, et al. The impact of a rights-based counselling intervention to reduce stigma in people affected by leprosy in Indonesia. PLoS Negl Trop Dis. 2016;10:e0005088.

    Article  PubMed  PubMed Central  Google Scholar 

  31. Ebenso B, Ayuba M. “Money is the vehicle of interaction”: insight into social integration of people affected by leprosy in northern Nigeria. Lepr Rev. 2010;81:99.

    Article  PubMed  Google Scholar 

  32. The Leprosy Mission Trust India. The livelihood focus. Beating the marginalisation due to leprosy 2020. https://www.leprosymission.in/what-we-do/institutions-and-projects/vocaitonal-training-centres/. Accessed 15 Feb 2022.

Download references

Author information

Authors and Affiliations

Authors

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2023 The Author(s), under exclusive license to Springer Nature Switzerland AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

van ’t Noordende, A.T., Dhondge, S., van Brakel, W.H. (2023). Psychosocial Aspects of Hansen’s Disease. In: Deps, P.D. (eds) Hansen’s Disease. Springer, Cham. https://doi.org/10.1007/978-3-031-30893-2_23

Download citation

  • DOI: https://doi.org/10.1007/978-3-031-30893-2_23

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-031-30892-5

  • Online ISBN: 978-3-031-30893-2

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics