QUALITY OF LIFE, PERCEIVED STIGMA, ACTIVITY AND PARTICIPATION OF PEOPLE WITH LEPROSY-RELATED DISABILITIES IN SOUTH-EAST NEPAL

Corline Brouwers, Wim van Brakel, Huib Cornielje

Abstract


In Nepal, many people live with leprosy-related disabilities. The objective of this study was to evaluate differences in socio-economic characteristics, quality of life (QOL), perceived stigma, activity and participation among people affected by leprosy as a group and between this group and the general population, and to identify prime determinants of QOL among the leprosy-affected people. People with leprosy-related disabilities (N=100; 54DGI/46DGII) and community controls (N=100) were selected from Morang district, South-East Nepal, using quota sampling. QOL, perceived stigma and participation and activity limitations were measured using the Nepali abbreviated version of the World Health Organisation Quality of Life (WHOQOL) assessment and the Nepali versions of the Jacoby Scale, Participation Scale and Green Pastures Activity Scale (GPAS), respectively. Total QOL, participation and activity levels of people affected by leprosy were worse than those of the general population. Regression analysis showed that the ability to maintain a family, satisfaction with health, vocational training, sex, activity and participation limitations (the latter for QOL only), perceived stigma and living situation (i.e. joint family, type of house) were significantly associated with a deterioration in QOL and higher participation restriction in one or both of the grading groups. There is an urgent need for interventions focused on quick referral of people with leprosy, to minimize the development of visible impairments, and social rehabilitation. The latter can be achieved by creating more public awareness, providing (financial) support for income generating projects and /or vocational training to leprosy- affected people, and by encouraging them to be involved in all community development activities. The current results indicate that such measures would help improve the quality of life of people with leprosy-related disabilities.

DOI 10.5463/DCID.v22i1.15


Keywords


Leprosy; disability; equality of life; perceived stigma; activity; participation ;Nepal

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References


Calcraft J.H. The effects of the stigma of leprosy on the income generation of leprosy affected people in the Terai are of south east Nepal. Asia pacific disability rehabilitation journal. 2006; 17(2):73-89.

Disability MB and Child proportion- Epidemiological significance and interpretation. [website:nlep.nic.in/pdf/DisabilityMBChild%20proportion.pdf]

Joseph GA, Rao S. Impact of leprosy of the quality of life. Bulletin of World Health Organization, 1999, 77: 515-517. PMid:10427937 PMCid:2557686

Tsutsumi A, Izutsu, Islam A, Maksuda, AN, Kato H., Wakai S. The quality of life, mental health and perceived stigma of leprosy patients in Bangladesh, Social Science & Medicine 2007, 64: 2443-2453. doi:10.1016/j.socscimed.2007.02.014

Tsutsumi A, Izutsu T, Islam A, Jalal UA, Nakahara S, Takagi F, et al. Depressive status of leprosy patients in Bangladesh: association with self-perception of stigma, Leprosy Review 2004, 75: 57-66. PMid:15072127

ShuMin C, DiangChang L, Bing L, Lin Z, XiouLu Y. Assessment of disability,social and economic situations of people affected by leprosy in Shandong Province, People’s Republic of China. Leprosy Review September 2003, 74(3): 215-221. PMid:14577466

Declaration of elimination of leprosy as a public health problem in Nepal [website: www.searo.who.int/LinkFiles/cds_press_release_leprosy_jan10.pdf]

Leprosy in Nepal, the Nippon Foundation [website: http://blog.canpan.info/tnf/archive/33]

Netherlands Leprosy Relief Nepal, Annual Progress Report 2065/2065 (2007/2008), A report contributing to the better understanding of NLR supported Leprosy control program in Nepal.

World Health Organization. WHOQOL-BREF instruction, administration, scoring and generic version of the assessment. Geneva: World Health Organization 1996.

World Health Organization. WHOQOL:Measuring quality of life. Geneva: World Health Organization 1997.

Bhattarai PC, Niessen L, Shrestha N, Samir KC. Health Related Quality of Life of adults in Nepal with respiratory symptoms using WHOQOL and EQ-5D. 2005.

Van Brakel WH, Measuring health-related stigma--a literature review. Psychol Health Med, 2006. 11(3): p. 307-34. doi:10.1080/13548500600595160

Van Brakel WH, et al. A scale to assess activities of daily living in persons affected by leprosy. Lepr Rev, 1999. 70(3): p. 314 PMid:10603721

Van Brakel WH, A Officer Approaches and tools for measuring disability in low and middle-income countries. Lepr Rev, 2008. 79(1): p. 50-64 PMid:18540237

Participation Scale User Manual version 5.2. Date of last revision: 09-07-2008.

Country Profile on Disability, Kingdom of Nepal, March 2002.

Mhasawad BC. Leprosy- a case for mental health care. Leprosy in India,1983;55, 310- 313.

Scott J. The psychosocial needs of leprosy patients. Lepr Rev, 2000. 71(4): p. 486-91 PMid:11201903

Floyd-Richard M, S. Gurung. Stigma reduction through group counselling of persons affected by leprosy--a pilot study. Lepr Rev, 2000. 71(4): p. 499-504.PMid:11201905

De Stigter DH, L. de Geus, ML Heynders. Leprosy: between acceptance and segregation. Community behaviour towards persons affected by leprosy in eastern Nepal. Lepr Rev, 2000. 71(4): p. 492- 8. PMid:11201904

Schuller et al. The way women experience disabilities and especially disabilities related to Leprosy in rural areas in South Sulawesi, Indonesia. Asia Pacific Disability Rehabilitation Journal, 2010;Vol. 21 No.1.

Ulrich M, et al. Leprosy in women: characteristics and repercussions. Soc Sci Med, 1993.37(4):p. 445-56. doi:10.1016/0277-9536(93)90280-H

Elwan A. Poverty and Disability: a survey of the literature. Background paper WDR, 1999.

Goudel C. A report on disability in the western region of Nepal. Asia Pacific Disability Rehabilitation Journal, 2004, Vol. 15, No. 2.

Hyland JA. A socio-cultural study of leprosy in Nepal: compliance, patient illness career patterns, and health education. Ph.D. dissertation 1993, University of Tasmania.

Cross H, Choudhary R. STEP: An intervention to address the issues of stigma related to leprosy Southern Nepal. Lepr Rev 2005, 76, 316–324.PMid:16411511




DOI: https://doi.org/10.5463/dcid.v22i1.15



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