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Abstract SUMMARY eprosy is a slowly progressive chronic granulomatous disease caused by the intracellular parasite Mycobacterium leprae. M. Leprae mainly affects peripheral nerves and skin cells and is viable for up to 36 hours in an optimal environment. The time of incubation is usually between two and seven years, Leprosy, also known as Hansen’s disease. However, reports have been made of incubations of up to 20 years. Factors such as gender, race and age have no effect on the occurrence of leprosy. Those who are primarily at risk of being infected are people living in low socioeconomic conditions and those with weak immune status. The disease is transmitted via droplets from the nose and mouth during close contact with infected people who are untreated. Stigma is the social process that drives from a situation of power imbalance, separation, status and discrimination occur. The world health Organization world Health Report describes Stigma as one of the remaining great’s obstacles to the treatment of mental illness. Coping is defined as ”the cognitive, behavioral and emotional efforts to manage particular external and/or internal demands that are appraised as taxing or exceeding the resources of the person. Patients with leprosy in endemic countries also suffer from marked economic and social dependency and L Summary 115 inferiority, despite assuming enormous responsibility of the family. Thus being away from the family for hospitalization generates much stigma which must be suitable addressed by every health care professional, especially nurses, who are largely responsible for hospital care. Significance of the study: Reports received from 115 countries and territories for the first quarter of 2013, showed that the registered prevalence of leprosy worldwide amounted to 189,018 cases. Thus Leprosy and disability produce significant change and consequently psychosocial problems. So stigma and coping patterns among patients having leprosy need to be assessed to describe patients suffering. Aim of the Study This study aimed to assess stigma and coping patterns among patients having leprosy. Research questions: How can describe stigma facing patients with leprosy? What are coping patterns among patients with leprosy? Summary 116 Subjects and methods: Research Design: A descriptive cross-sectional design was utilized in this study. Setting: The study was conducted in the leprosy Colony Hospital in El-Khanka City. Subjects: A simple random sample of 80 patients of both sexes, different age groups, medically diagnosed as having leprosy, with no psychotic problems and willing to participate in the study were selected from the outpatient clinics of the previously mentioned study setting. Tools of the study: 1- Interview questionnaire: It included the socio-demographic data of the study subjects such as code number, age, sex, marital states, residence, monthly income, occupation and educational level. 2- Medical history of the patients which included, time of beginning the disease, time of beginning treatment, type of treatment and number of hospital admission. Summary 117 3- Stigma scale: The scale was used to assess perception of leprosy patients for stigma which it contained physical, psychological and social factors. 4- Coping scale: It was developed to assess thoughts and actions that individuals use to cope with stressful encounters of the leprosy patient with the stigma. It included social, psychological, educational and spiritual coping items. Pilot study: The pilot study included 10 from leprosy patients who were fulfilling the previously mentioned criteria. According to the results of the pilot study, simple modifications were done as rephrasing questions and removing one question. Those who shared in the pilot study were included in the main study sample. The findings of the present study reached to the following: • The mean ±SD age of the studied patients was (41.43±17.22 years); slightly more than half (57%) were males; less than half (46.3%) were single & (35.0%) were married; about two thirds (65%) were resident in urban areas; slightly less than three fourth (73.8%) were living with their families; the majority of them (96.3%) didn’t have enough monthly income; more than half (57.5%) were un-employed & one Summary 118 forth (25%) were housewives; and about one third (35%) had primary education & 21.3% of them were illiterate. • The majority (87.5%) of the studied cases didn’t have physical illness; half (50%) of them had illness onset five years and more; all (100%) of them had taking pharmacological drugs & none of them (0.0%) had psychotropic drugs; and nearly to half (47.5%) had once time hospital admission while 40% of them were hospital admitted more than three times. • Most of leprosy patients under the study had agreed on the variables of stigma, “People seeing me as an infectious person, people refusing me to marry from them, people do not recognize my opinions, people not accepting me to get the medical care with them at the same health facility and people not accepting to make friendship relation with me, people showing bad behavior to leprosy patients, I am avoiding the friends because they are laughing at them” (52.5%, 43.8%, 43.8%, 43.8, 42.5%, 45%, 53.8%, respectively). While most of them were disagree on the stigma variables “people are disgusting me, employers refusing to employ the leprosy patient or had leprosy disease before, friends changing their relation with me after they knew I had leprosy disease before, leprosy patients obligatory resigning from their jobs, I am refusing marriage because I am a leprosy patient, I prefer to be a friend with other leprosy patients, When I get my treatment, I refuse to Summary 119 go out with my friends and I refuse to leave my work if the other people said that” (42.5%, 45.0%, 52.5%, 65%, 72.5%, 53.8%, 50% & 40% respectively). Although most of them were strongly agreed on, “Leprosy patients hiding their disease, leprosy patient re-thinking more than once before he telling anyone about his disease and leprosy patient masking information about his disease when he filling an application form, I am trying to change my friends’ point of view about their conception of leprosy patients, I can complain to the responsible authorities if there is a lack in the treatment, I can complain or ask for help from agencies or organizations who look after the leprosy patients and I participate in social activities that are related to leprosy patients as (teach people what the leprosy disease is” (48.8%, 46.3% & 47.5%, 45.0%, 52.5%, 61.3% & 45.0% respectively). Whereas While more than one third of them (37.5%) were equally disagreed and strongly agreed on the third variable of stigma “Health care providers treating badly leprosy patients when they come to the health facility as well as, more or less one third (36.3%, 30.0% & 33.8%) of leprosy patients under the study were disagreed, agreed and strongly agreed on the variable of stigma “I am refusing to apply for any job, when I know the employer does not employ any leprosy patients” respectively. • Almost all (98.8%) the leprosy patients always “asking Allah to recover from leprosy disease”. Most (58.8%, Summary 120 45.0%, 52.5%, 48.8%, 48.8%, 47.5%, 40.0%, 51.3%, 67.5%, 52.5% & 45%) of leprosy patients under the study were sometimes utilizing coping strategies’ items “Talking with family about the feeling towards the problem of disease, talking with the close friends about the feelings towards the problem, crying reduce the severity of psychological problems, taking the superiors’ advice to solve the problem, get information from the colleagues to solve problem, adapting with the problem, trying to change the lifestyle routine to adaptive, looking for new information to treat with problem, making new friends to deal with their health problem, avoiding the psychological pressure & positively thinking with them-selves” respectively. Also, around one third of leprosy patients (26.2%, 38.8% & 35.0%) were (rarely never, sometimes & always) respectively “Seeing the problem in a positive way”. But on the other hand, about half (50% & 55%) of them were rarely never “Practicing the exercises to reduce the psychological stress & getting a vacation to escape from the looks of others” respectively. Moreover, three fourths (75.0%) of them were rarely never “living in a daydreams” and slightly more than half (51.3% & 53.8%) of them were rarely never “taking psychiatric therapist advice to adapt with their health problem & hiding the inside feelings” respectively. • There was a highly positive correlation between stigma scale and total score of coping (r= 0.495, p-value=0.000); Summary 121 also, there was a highly positive correlation between leprosy patients’ age and coping scale pattern (r= 0.326, pvalue= 0.003); but on the other hand there was a negative insignificant correlation between leprosy patients’ age and scale of their stigma (r= -0.118, p-value=0.298). • There was a highly significant relation between stigma grades and scale of coping pattern grades (F= 34.9, pvalue< 0.001). • There was a statistical significant relation between total score of stigma scale and socio-demographic of leprosy patients under the study as regards the working conditions and the physical illnesses (t = 4.32, p-value= 0.016 & t = -2.51, pvalue= 0.0308) respectively. Moreover, there was a highly statistical significant relation between total score of stigma scale and socio-demographic of leprosy patients under the study as regards the onset of illness (t = 5.55, p-value= 0.005). • There was a significant relation between total score of coping scale and socio-demographic characteristics of leprosy patients under the study as regards the working conditions and number of hospital admission (t = 4.32, pvalue= 0.0167 & t = -2.32, p-value=0.0232) respectively. In addition, it reveals that, there was a highly significant relation between total score of coping scale and sociodemographic characteristics of leprosy patients under the study as regards the gender and illness onset (t = -3.02, pvalue= 0.0345 & t = 22.43, p-value=0.0001) respectively In the light of the study findings, the following were recommended 1- Designing and conducting a national-level mass campaign of health education for the general public. The general public should be made aware that Hansen’s disease is not a genetic disorder, it is totally curable, and the patients need social support. 2- Encouraging a better coordination between all healthcare partners like leprologists, dermatologists, psychiatrists, and healthcare workers to settle all the issues and to help in achieving the eradication goals of leprosy disease. 3- Improving psychological rehabilitation, increasing emotional stability and self-worth of the discharged leprosy patients should be encouraged to maintain stable married life for them. Also as a step to reduce depression, loneliness, discrimination and rejection common among discharged patients. 4- Highlighting the need to encourage the discharged patients to be active in all religious activities. 5- The family members of discharged patients should be health educated on the benefits of providing emotional support to leprosy patients. They should be enlightened on the need to assist leprosy patients to combat the problem of stigma in the communities. |