Correlation Between Stigma and Quality of Life in Leprosy Patients in Mehrab Khan Region of Mashhad
-
Zahra Safavi Bayat
,
Wim Van Brakel
,
Hamideh Ebrahimi
,
Nadere Naderi Ravesh
,
Nezhat Shakeri
,
Masomeh Ebrahimi
Abstract
Leprosy is one of the oldest chronic diseases, and similar to other infectious diseases, it causes long-term physical and social effects on the lives of patients and their families. This was a cross-sectional study conducted with 103 patients with leprosy in Mashhad in the Mehrab Khan region in March 2016. The sampling method was convenience sampling. The data was analyzed using SPSS version 19. Descriptive statistics (frequency, percentage, mean and standard deviation) and inferential tests (ANOVA, Pearson correlation, and independent t-test) were used. The results showed that the mean age of patients was 65.2±8.1 years and the mean age of developing leprosy was 15.3±7.03. There was an inverse correlation between the score of overall stigma, internal stigma, and all dimensions of quality of life that was statistically significant, except for the social dimension (r= -0.181…; P=0.067). There was an inverse correlation between the psychological dimension of quality of life and experienced stigma. The highest score of the overall quality of life was related to divorced patients with a mean score of 79.7, which was statistically significant (P=0.016) from those who were not divorced. In post-hoc test, just the difference between widow and divorced were significant regarding quality of life. According to results, there was a negative correlation between the quality of life and all aspects of stigma using the SARI tool.
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3. Luka EE. Understanding the stigma of leprosy. South Sudan Medical Journal. 2010;3(3):45-8.
4. Azizi MH, Bahadori M. A history of leprosy in Iran during the 19th and 20th centuries. Archives of Iranian medicine. 2011 Nov 1;14(6):425.
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6. Virmond M, Grzybowski A, Virmond L. Leprosy: A glossary. Clinics in dermatology. 2015 Feb 28;33(1):8-18.
7. Hegde SP, Shenoy MM, Pinto M, Amin VB. Leprosy: Chronicles of a disabling disease. Archives of Medicine and Health Sciences. 2015 Jul 1;3(2):346.
8. Breen DP, Deeb J, Vaidya S, Lockwood DN, Radunovic A. Leprosy: a'common'and curable cause of peripheral neuropathy with skin lesions. The journal of the Royal College of Physicians of Edinburgh. 2015 Mar;45(1):38-42.
9. McLaren DS, Shaw MJ, Dalley KR. Eye Disease in Leprosy Patients. A Study in Central Tanganyika. International Journal of Leprosy. 1961;29(28).
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11. White C, Franco-Paredes C. Leprosy in the 21st century. Clinical microbiology reviews. 2015 Jan 1;28(1):80-94.
12. Van Brakel WH, Miranda Galarza B. Infectious diseases: a case study of leprosy-related stigma. The stigma of disease and disability: understanding causes and overcoming injustices. American Psychological Association. 2013:139-64.
13. Grzybowski A, Nita M. Leprosy in the Bible. Clinics in dermatology. 2016 Feb 29;34(1):3-7.
14. Rafferty J. Curing the stigma of leprosy. Leprosy review. 2005 Jun 1;76(2):119-26.
15. Sermrittirong S, Brakel WV, Kraipui N, Traithip S, Bunders-Aelen JF. Comparing the perception of community members towards leprosy and tuberculosis stigmatisation. Lepr Rev. 2015 Mar 1;86:54-61.
16. Frist T. Don't treat me like I have leprosy. ILEP; 2003.
17. Adhikari B, Kaehler N, Raut S, Marahatta SB, Gyanwali K, Chapman RS. Risk factors of stigma related to leprosy-A systematic review. Journal of Manmohan Memorial Health Sciences. 2013;1(2):3-11.
18. van Brakel WH. Measuring leprosy stigma-a preliminary review of the leprosy literature1. International Journal of Leprosy and Other Mycobacterial Diseases. 2003 Sep 1;71(3):190.
19. Nejat SA, Montazeri A, Holakouie Naieni K, Mohammad KA, Majdzadeh SR. The World Health Organization quality of Life (WHOQOL-BREF) questionnaire: Translation and validation study of the Iranian version. Journal of School of Public Health and Institute of Public Health Research. 2006 Jul 15;4(4):1-2.
20. Peters R. A reflection on positionality and knowledge processes in transdisciplinary research. Knowledge Management for Development Journal. 2013;9(2).
21. Lusli MI, Peters RM, Zweekhorst MB, Van Brakel WH, Seda FS, Bunders JF. Lay and peer counsellors to reduce leprosy-related stigma—lessons learnt in Cirebon, Indonesia. Lepr Rev. 2015 Mar 1;86:37-53.
22. Whoqol Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological medicine. 1998 May;28(3):551-8.
23. F. H. Pucci, C. R. Teofilo, S. G. A. Arag ´ ao, and L. G. F. T ˜ avora, ´ “Pain in hansen’s disease patients,” Revista DOR, vol. 12, no. 1, pp. 15–18, 2011.
24. Kaehler N, Adhikar B, Raut S, Marahatta SB, Chapman RS. Perceived Stigma towards Leprosy among Community Members Living Close to Nonsomboon Leprosy Colony in Thailand. PloS one. 2015 Jun 5; 10(6):e0129086.
25. Reis FJ, Gomes MK, Rodrigues J, Gosling AP, Fontana AP, Cunha AJ. Pain and its consequences in quality of life: a study with WHOQOL-BREF in leprosy patients with neuropathic pain. ISRN Tropical Medicine. 2013 Apr 30; 2013.
26. Joseph GA, Sunder Rao PS. Impact of leprosy on the quality of life. BULLETIN-WORLD HEALTH ORGANIZATION. 1999 Jun 1; 77:515-7.
27. Reis FJ, Cunha AJ, Gosling AP, Fontana AP, Gomes MK. Quality of life and its domains in leprosy patients after neurolysis: a study using WHOQOL-BREF. Lepr Rev. 2013 Jun 1; 84(2):119-23.
28. A. G. Mellagi and Y. N. Monteiro, “The religious imaginary of Hansen’s disease patients: a comparative study of former inmates of the asylums of S˜ao Paulo and current Hansen’s disease patients,” Historia, Ciencias, Saude-Manguinhos, vol. 16, no. 2, pp. 489–504, 2009.
29. Brouwers C, Van Brakel W, Cornielje H et al. Quality of life, perceived stigma, activity and participation of people with leprosy-related disabilities in south-east Nepal. Disability, CBR and Inclusive Development, 2011; 22:16–34.
30. Tsutsumi A, Izutsu T, Islam AM et al. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med, 2007; 64: 2443–2453.
31. Kushwah SS, Govila AK, Upadhyay S, Kushwah J (1981) A study of social stigma among leprosy patients attending leprosy clinic in Gwalior. Lepr India. 53(2):221–5. PMID: 7253574.
32. Calcraft JH (2006) The efffects of the stigma of leprosy on the income generation of leprosy affected people in the terai area of south east nepal. Asia pacific Diability Rehab Journal 17(2): 73–89.
33. Bello AI, Dengzee SA, Iyor FT. Health related quality of life amongst people affected by leprosy in south ghana: A needs assessment. Lepr Rev. 2013 Mar 1; 84(1):76-84.
34. Martins BDL, Torres FN, Oliveira ML. Impact on the quality of life of patients with Hansen’s disease: Correlation between Dermatology Life Quality Index and disease status. A Bras Dermatol, 2008; 83: 39–43.
35. Jegede AS. The Yoruba culturalconstruction of health and illness. Nordic J Afr Stud, 2002; 11: 322–335.
36. Adhikari B, Kaehler N, Chapman RS, Raut S, Roche P. Factors affecting perceived stigma in leprosy affected persons in western Nepal. PLoS Negl Trop Dis. 2014 Jun 5; 8(6):e2940.
37. Rao VP, Rao IR, Palande DD. Socio-economic rehabilitation programmes of LEPRA India: Methodology, results and application of needs-based socio-economic evaluation. Lepr Rev, 2000; 71: 466–471.
38. Lustosa AA, Nogueira LT, Pedrosa JI, Teles JB, Campelo V. The impact of leprosy on health-related quality of life. Revista da Sociedade Brasileira de Medicina Tropical. 2011 Oct; 44(5):621-6.
39. Van Brakel WH, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R, Kurniasari I, Kasim M, Kesumaningsih KI, Wilder-Smith A. Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Global health action. 2012 Jul 19; 5.
40. Fung KM, Tsang HW, Corrigan PW, Lam CS, Cheung WM. Measuring self-stigma of mental illness in China and its implications for recovery. Int J Soc Psychiatry 2007; 53: 40818.
41. Fung KM, Tsang HW, Corrigan PW. Self-stigma of people with schizophrenia as predictor of their adherence to psychosocial treatment. Psychiatr Rehabil J 2008; 32: 95104.
42. Corrigan PW, Larson JE, Rusch N. Self-stigma and the ‘why try’ effect: impact on life goals and evidence-based practices. World Psychiatry 2009; 8: 7581- 3.
2. Peters RM, Zweekhorst MB, Bunders JF, van Brakel WH. A cluster-randomized controlled intervention study to assess the effect of a contact intervention in reducing leprosy-related stigma in Indonesia. PLoS Negl Trop Dis. 2015 Oct 20;9(10):e0004003.
3. Luka EE. Understanding the stigma of leprosy. South Sudan Medical Journal. 2010;3(3):45-8.
4. Azizi MH, Bahadori M. A history of leprosy in Iran during the 19th and 20th centuries. Archives of Iranian medicine. 2011 Nov 1;14(6):425.
5. Suchonwanit P, Triamchaisri S, Wittayakornrerk S, Rattanakaemakorn P. Leprosy reaction in Thai population: a 20-year retrospective study. Dermatology research and practice. 2015 Oct 5;2015.
6. Virmond M, Grzybowski A, Virmond L. Leprosy: A glossary. Clinics in dermatology. 2015 Feb 28;33(1):8-18.
7. Hegde SP, Shenoy MM, Pinto M, Amin VB. Leprosy: Chronicles of a disabling disease. Archives of Medicine and Health Sciences. 2015 Jul 1;3(2):346.
8. Breen DP, Deeb J, Vaidya S, Lockwood DN, Radunovic A. Leprosy: a'common'and curable cause of peripheral neuropathy with skin lesions. The journal of the Royal College of Physicians of Edinburgh. 2015 Mar;45(1):38-42.
9. McLaren DS, Shaw MJ, Dalley KR. Eye Disease in Leprosy Patients. A Study in Central Tanganyika. International Journal of Leprosy. 1961;29(28).
10. Power M. World Health Organization Quality of Life Disabilities Module. InEncyclopedia of Quality of Life and Well-Being Research 2014 (pp. 7261-7266). Springer Netherlands.
11. White C, Franco-Paredes C. Leprosy in the 21st century. Clinical microbiology reviews. 2015 Jan 1;28(1):80-94.
12. Van Brakel WH, Miranda Galarza B. Infectious diseases: a case study of leprosy-related stigma. The stigma of disease and disability: understanding causes and overcoming injustices. American Psychological Association. 2013:139-64.
13. Grzybowski A, Nita M. Leprosy in the Bible. Clinics in dermatology. 2016 Feb 29;34(1):3-7.
14. Rafferty J. Curing the stigma of leprosy. Leprosy review. 2005 Jun 1;76(2):119-26.
15. Sermrittirong S, Brakel WV, Kraipui N, Traithip S, Bunders-Aelen JF. Comparing the perception of community members towards leprosy and tuberculosis stigmatisation. Lepr Rev. 2015 Mar 1;86:54-61.
16. Frist T. Don't treat me like I have leprosy. ILEP; 2003.
17. Adhikari B, Kaehler N, Raut S, Marahatta SB, Gyanwali K, Chapman RS. Risk factors of stigma related to leprosy-A systematic review. Journal of Manmohan Memorial Health Sciences. 2013;1(2):3-11.
18. van Brakel WH. Measuring leprosy stigma-a preliminary review of the leprosy literature1. International Journal of Leprosy and Other Mycobacterial Diseases. 2003 Sep 1;71(3):190.
19. Nejat SA, Montazeri A, Holakouie Naieni K, Mohammad KA, Majdzadeh SR. The World Health Organization quality of Life (WHOQOL-BREF) questionnaire: Translation and validation study of the Iranian version. Journal of School of Public Health and Institute of Public Health Research. 2006 Jul 15;4(4):1-2.
20. Peters R. A reflection on positionality and knowledge processes in transdisciplinary research. Knowledge Management for Development Journal. 2013;9(2).
21. Lusli MI, Peters RM, Zweekhorst MB, Van Brakel WH, Seda FS, Bunders JF. Lay and peer counsellors to reduce leprosy-related stigma—lessons learnt in Cirebon, Indonesia. Lepr Rev. 2015 Mar 1;86:37-53.
22. Whoqol Group. Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychological medicine. 1998 May;28(3):551-8.
23. F. H. Pucci, C. R. Teofilo, S. G. A. Arag ´ ao, and L. G. F. T ˜ avora, ´ “Pain in hansen’s disease patients,” Revista DOR, vol. 12, no. 1, pp. 15–18, 2011.
24. Kaehler N, Adhikar B, Raut S, Marahatta SB, Chapman RS. Perceived Stigma towards Leprosy among Community Members Living Close to Nonsomboon Leprosy Colony in Thailand. PloS one. 2015 Jun 5; 10(6):e0129086.
25. Reis FJ, Gomes MK, Rodrigues J, Gosling AP, Fontana AP, Cunha AJ. Pain and its consequences in quality of life: a study with WHOQOL-BREF in leprosy patients with neuropathic pain. ISRN Tropical Medicine. 2013 Apr 30; 2013.
26. Joseph GA, Sunder Rao PS. Impact of leprosy on the quality of life. BULLETIN-WORLD HEALTH ORGANIZATION. 1999 Jun 1; 77:515-7.
27. Reis FJ, Cunha AJ, Gosling AP, Fontana AP, Gomes MK. Quality of life and its domains in leprosy patients after neurolysis: a study using WHOQOL-BREF. Lepr Rev. 2013 Jun 1; 84(2):119-23.
28. A. G. Mellagi and Y. N. Monteiro, “The religious imaginary of Hansen’s disease patients: a comparative study of former inmates of the asylums of S˜ao Paulo and current Hansen’s disease patients,” Historia, Ciencias, Saude-Manguinhos, vol. 16, no. 2, pp. 489–504, 2009.
29. Brouwers C, Van Brakel W, Cornielje H et al. Quality of life, perceived stigma, activity and participation of people with leprosy-related disabilities in south-east Nepal. Disability, CBR and Inclusive Development, 2011; 22:16–34.
30. Tsutsumi A, Izutsu T, Islam AM et al. The quality of life, mental health, and perceived stigma of leprosy patients in Bangladesh. Soc Sci Med, 2007; 64: 2443–2453.
31. Kushwah SS, Govila AK, Upadhyay S, Kushwah J (1981) A study of social stigma among leprosy patients attending leprosy clinic in Gwalior. Lepr India. 53(2):221–5. PMID: 7253574.
32. Calcraft JH (2006) The efffects of the stigma of leprosy on the income generation of leprosy affected people in the terai area of south east nepal. Asia pacific Diability Rehab Journal 17(2): 73–89.
33. Bello AI, Dengzee SA, Iyor FT. Health related quality of life amongst people affected by leprosy in south ghana: A needs assessment. Lepr Rev. 2013 Mar 1; 84(1):76-84.
34. Martins BDL, Torres FN, Oliveira ML. Impact on the quality of life of patients with Hansen’s disease: Correlation between Dermatology Life Quality Index and disease status. A Bras Dermatol, 2008; 83: 39–43.
35. Jegede AS. The Yoruba culturalconstruction of health and illness. Nordic J Afr Stud, 2002; 11: 322–335.
36. Adhikari B, Kaehler N, Chapman RS, Raut S, Roche P. Factors affecting perceived stigma in leprosy affected persons in western Nepal. PLoS Negl Trop Dis. 2014 Jun 5; 8(6):e2940.
37. Rao VP, Rao IR, Palande DD. Socio-economic rehabilitation programmes of LEPRA India: Methodology, results and application of needs-based socio-economic evaluation. Lepr Rev, 2000; 71: 466–471.
38. Lustosa AA, Nogueira LT, Pedrosa JI, Teles JB, Campelo V. The impact of leprosy on health-related quality of life. Revista da Sociedade Brasileira de Medicina Tropical. 2011 Oct; 44(5):621-6.
39. Van Brakel WH, Sihombing B, Djarir H, Beise K, Kusumawardhani L, Yulihane R, Kurniasari I, Kasim M, Kesumaningsih KI, Wilder-Smith A. Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination. Global health action. 2012 Jul 19; 5.
40. Fung KM, Tsang HW, Corrigan PW, Lam CS, Cheung WM. Measuring self-stigma of mental illness in China and its implications for recovery. Int J Soc Psychiatry 2007; 53: 40818.
41. Fung KM, Tsang HW, Corrigan PW. Self-stigma of people with schizophrenia as predictor of their adherence to psychosocial treatment. Psychiatr Rehabil J 2008; 32: 95104.
42. Corrigan PW, Larson JE, Rusch N. Self-stigma and the ‘why try’ effect: impact on life goals and evidence-based practices. World Psychiatry 2009; 8: 7581- 3.
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| Issue | Vol 58, No 11 (2020) | |
| Section | Articles | |
| DOI | https://doi.org/10.18502/acta.v58i11.5146 | |
| Keywords | ||
| Leprosy Quality of life Questionnaire Stigma | ||
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How to Cite
1.
Safavi Bayat Z, Van Brakel W, Ebrahimi H, Naderi Ravesh N, Shakeri N, Ebrahimi M. Correlation Between Stigma and Quality of Life in Leprosy Patients in Mehrab Khan Region of Mashhad. Acta Med Iran. 2021;58(11):582-590.
