ORIGINAL ARTICLE Correlation Between Stigma and Quality of Life in Leprosy Patients in Mehrab Khan Region of Mashhad Zahra Safavi Bayat1, Wim Van Brakel2, Hamideh Ebrahimi3, Nadere Naderi Ravesh1, Nezhat Shakeri4, Masomeh Ebrahimi5 1 Department of Nursing, School of Nursing and Midwifery, Shahid Beheshti University of Medical Sciences, Tehran, Iran 2 Department of Head Technical, Netherlands Leprosy Relief, Amsterdam, Netherlands 3 Department of Nursing, Student Research Committee, Shahid Beheshti University of Medical Sciences, Tehran, Iran 4 Department of Biostatistics, School of Allied Medical Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran 5 Clinical Research Development Unit of Pirooz Hospital,Guilan University of Medical Sciences, Rasht, Guilan, Iran Received: 28 Mar. 2020; Accepted: 04 Aug. 2020 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. © 2020 Tehran University of Medical Sciences. All rights reserved. Acta Med Iran 2020;58(11):582-590. Keywords: Leprosy; Quality of life; Questionnaire; Stigma Introduction nerves in the Schwann cells gradually causes loss of sensation, deformity in limbs, and muscle atrophy (6). The chronic nature of many infectious diseases Standard treatment for leprosy was announced by WHO causes long-term physical and social effects in the lives in 1982, consisting of multiple drug therapy (MDT), a of patients and their families (1). Leprosy is one of the combination of rifampicin, dapsone, and clofazimine, oldest and devastating chronic diseases (2), and its which, if a patient receives early treatment would history goes back to the writings on Egyptian papyrus in prevent the spread of disabilities and prevent drug 1550 BC and manuscripts in Hindi to 600 years before resistance (7). In the absence of effective treatment, Christ (3). In Iran, we have heard much about leprosy permanent damage may happen in the skin, nerves, how Sultan Mohammad sought refuge in a location limbs (8), and eyes (9). where leprosy patients resided and remained until the In 2013, 215,656 new cases of leprosy were reported end of his life at the same place because he was aware by the World Health Organization (WHO), and the three that the attackers were afraid of that place (4). countries with the highest prevalence were India, Brazil, The bacillus Mycobacterium leprae, the causative and Indonesia (10). Despite the significant advances in agent of leprosy, was discovered in 1873 by a treatment and control of leprosy, the disease is still Norwegian physician called Gerhard Hansen (5). The prevalent in many developing countries (11). proliferation of Mycobacterium leprae in peripheral The thought of leprosy caused the horror images of Corresponding Author: H. Ebrahimi Department of Nursing, Student Research Committee, Shahid Beheshti University of Medical Sciences, Tehran, Iran Tel: +98 9306830157, Fax: +98 41522220915, E-mail address: [email protected] Z. Safavi Bayat, et al. the disease from the ancient past due to the impact of as HIV/AIDS, TB, and hepatitis this disease on the face and limbs. Despite the effective 4. Having no addiction to opium or drug treatment, the fear among people did not reduce. The 5 Being between 18-75-year-old existence of difficulties in finding work, education, marriage, and deprivation of social amenities and Data collection instrument facilities in the community and a lower livelihood status Data collection instruments were the World Health have an effect on their quality of life (12). Organization Quality of Life Questionnaire (WHOQOL- In the book of the Old Testament of the Bible and in BREF) and Stigma Assessment and Reduction of Impact many cultures and countries such as Nepal, India, and (SARI) scale (Dadun et al., in print) and a questionnaire Nigeria, leprosy is seen as a sign of God's punishment on gender, age, number of children, marital status, for committing a great sin because of the changes in education level, employment status, and development appearance and limbs of these patients (13). This causes age. the social sensitivity and isolation of patients from the community, which has a negative impact on the quality WHO quality of life-BREF (WHOQOL-BREF) of life (14). Also, in Thailand, those suffering from The WHOQOL-BREF instrument comprises 26 leprosy were treated negatively by neighbors and even items, which measure the following broad domains: health providers, causing some of these patients physical health, psychological health, social suffering from leprosy to refuse the treatment due to relationships, and environment. The WHOQOL-BREF stigma. In other words, these patients feel that they are is a shorter version of the original instrument that is not accepted by the community due to the signs of the recommended for use in large research studies or disease. They then feel shame and frustration and try to clinical trials. live on the outside of the community, deprived of This questionnaire was translated, and its reliability citizenship and individual rights (15). Leprosy is an ugly and validity were confirmed by Nedjat et al. (19). word in people's minds. In some cultures, the word Indeed, this questionnaire is used in many parts of the “leprosy” is used as a curse word in conversation (16). world. The values of the reliability coefficient using The person who receives the stigma of leprosy is Intra Class Correlation (ICC) were 0.77 in the area of facing a variety of mental health problems, such as physical health (physical), 0.77 in the psychological emotional stress, anxiety, depression, and even suicide area, 0.75 in the social area, and 0.84 in the environment risk, as well as isolation and a variety of family area. Considering that this instrument is in the public problems (17). People may abandon the stigmatized domain and has good reliability and validity, it can be person and his/her family and children, and leprosy can used in different target groups. even cause divorce (18). Given that all of the problems listed affect the quality of life of patients with leprosy Stigma assessment and reduction of impact (SARI) and even that of the family, the aim of this study was to In this study, SARI was used to measure the determine the relationship between the stigma and perceived stigma of leprosy patients (20). This quality of life of patients with leprosy in Mehrab Khan instrument is based on the Berger HIV Stigma Scale that of Mashhad. was created for persons living with HIV/AIDS. The SARI project aimed to assess the effectiveness of three Materials and Methods stigma reduction interventions for people affected by leprosy in the Cirebon District, Indonesia. The scale This was a cross-sectional study conducted on 103 consists of 22 items and is scored using a Likert scale persons affected by leprosy in Mashhad in the Mehrab (always, often, rarely, and do not know). Khan region in March 2016. The sampling method was The SARI stigma scale has four sub-scales. The convenience sampling. internal consistency measured with Cronbach's alpha was 0.82 for experienced stigma, 0.79 for perceived Inclusion criteria stigma, 0.79 for internal stigma, and 0.79 for expected stigma (21) and again achieved a Kappa score of 0.75 1. Degree of disability of patients is 1 or 2 as defined for test-retest reliability of the SARI scale, which WHO indicates good reliability of this instrument. Therefore it 2. Having no other acute or chronic disease is a comprehensive, reliable, and valid instrument to 3. Having no disease which is related to stigmas such assess different aspects of stigma in people affected by Acta Medica Iranica, Vol. 58, No. 11 (2020) 583 Correlation between stigma and quality of life leprosy (22). Data analysis Translation and testing of validity and reliability of The data was analyzed using SPSS version 19, and SARI were done in Iran after obtaining permission from descriptive statistics (frequency, percentage, mean and the authors responsible for producing the SARI scale standard deviation) and inferential tests (ANOVA, (Dr van Brakel). We then determined its face and Pearson correlation, and independent t-test) were used content validity and reliability. In this study, Cronbach's alpha coefficient was calculated in two stages for the Results SARI scale. In the first stage, after the determination of its face and content validity and reliability, internal The study was conducted on 103 patients with consistency was determined using a pilot sample of 30 leprosy in Mehrab Khan of Mashhad city that; the mean patients with leprosy located in the Mehrab Khan age of patients was 65.2±8.1 years, and the mean age of Region of Mashhad city.