The psychosocial impact of vitiligo in Indian patients.

BACKGROUND: Vitiligo has a special significance in Indian patients both because depigmentation is obvious on darker skin and the enormous stigma associated with the disease in the culture. AIMS: This study was carried out to determine the beliefs about causation, aspects of the disease that cause concern, medical, and psychosocial needs of the patients, expectation from treatment and from the treating physician, and effects of disease on the patient's life. METHODS: Semi-structured interviews were conducted in 50 patients with vitiligo. Purposive sampling was used to select subjects for the study. Each interview was recorded on an audio-cassette and transcripts were analyzed to identify significant issues and concerns. RESULTS: Patients had a range of concerns regarding their disease such as physical appearance, progression of white patches onto exposed skin and the whole body, ostracism, social restriction, dietary restrictions, difficulty in getting jobs, and they considered it to be a significant barrier to getting married. The condition was perceived to be a serious illness. Stigma and suicidal ideation was reported. While there were several misconceptions about the cause of vitiligo, most patients did not think their disease was contagious, heritable or related to leprosy. Multiple medical consultations were frequent. Complete repigmentation was strongly desired, but a lesser degree of repigmentation was acceptable if progression of disease could be arrested. The problems were perceived to be more severe in women. The disease imposed a significant financial burden. CONCLUSION: Addressing psychosocial factors is an important aspect of the management of vitiligo, particularly in patients from communities where the disease is greatly stigmatizing.

A study of social status of people with disabilities due to leprosy in desert part of Rajasthan, India.

Leprosy is a stigmatized disease in our society. Ninety-eight disabled leprosy patients were studied in areas of Pokaran CHC and Ramdeora PHC of Jaisalmer district. About ninety-five per cent (94.6%) leprosy patients were found discarded by their life partners due to disabilities. A positive relationship was found between social stigma and deformity due to disease. IEC need to be done at community level also for changing attitude and behaviour towards leprosy patients.

Is soil an alternative source of leprosy infection?

Leprosy is believed to be transmitted only through human contacts. However, many anomalous observations had gradually accumulated which had weakened such beliefs. These are: only 1/3 rd cases of leprosy give a definite history of being transmitted from other known cases; life-long spouses, in whom only one has leprosy, seldom lead to leprosy to others; while MDT applied intensively in most leprosy endemic countries, could successfully reduce incidence of leprosy, however, simultaneously new cases arise unabated. Besides, a close look at animal leprosies also suggested a mode of transmission other than human-type contact. Thus, a search for alternative hypothesis led to the findings that leprosy bacillus (LB) could be a soil chemoautotroph and could facultatively live both in the human body and the soil which could serve as an alternative source of infection. Evaluation of accumulated evidences points to this possibility.

Double jeopardy: women and leprosy in India.

This article presents evidence from two states of India, Bihar and Maharashtra, on the process of "dehabilitation" among male and female leprosy patients, and suggests gender-sensitive interventions to address existing problems in leprosy control. While the study investigated a wide range of gender differences in the impact of leprosy, this article focuses on only two-marriage and family reactions. Important gender differences were apparent in the impact of the disease. While both men and women were negatively affected in terms of their family and marital lives, women suffered more isolation and rejection. Psychologically, women appeared more vulnerable because they were deprived of personal contact with others in the domestic environment where they were accustomed to receiving their greatest emotional rewards. Women reported that indifference to them by other family members, or seeming negation of their presence, caused them the greatest suffering. This underscores the importance of providing information to both leprosy patients and their families about the disease and its treatment, including the possibility of cure with MDT (multi-drug therapy) and of counselling family members about their crucial role in helping patients cope and recover. This support is even more critical for women, who often lack access to the variety of outside advice and assistance available to men. The evidence presented in the article demonstrates the importance of analysing leprosy from a gender perspective, not only because this approach helps to inform our understanding of the determinants and consequences of the disease, but also because it provides new insights for improved disease control.

PIP: As part of a larger study of gender differences in the stigmatization connected with leprosy in India as well as in its detection and treatment, this article presents data on the impact of leprosy on marriage and the family. A review of previous studies shows that women's immune responses to leprosy may be weakened by pregnancy, that congenital transmission is possible but rare, and that affected women may not receive counseling about risks of pregnancy or the side effects of the drugs they are given. The present study gathered data from 2495 inhabitants of Bihar and Maharashtra including 934 who were receiving treatment and living relatively normal lives (59% male), 300 members of their families, 1071 who had to leave home or a job (63% male), 100 who were rehabilitated (55% male), and 90 health workers treating the patients. Additional data were gathered from in-depth interviews and 25 case studies (13 males). The findings of this study, including the fact that the impact of leprosy was greater for women because they suffered more isolation and rejection than men, led to the following conclusions: 1) in order to improve early detection and treatment of women, they should be encouraged to seek treatment for any skin ailments; 2) leprosy workers should alleviate concerns about the efficacy of smaller pills and should counsel families about the importance of the medical regimen; 3) women should be counseled about the risks of pregnancy associated with leprosy and about the side effects of the drugs; 4) calendars and family members should be used to help patients follow their drug regimen; 5) leprosy workers should undergo gender sensitization, and more women should be recruited to examine women; and 6) the needs of children of leprosy patients should receive attention so they can have equal access to education, employment, and health care.

Problems and needs of women leprosy patients in Bombay and Goa--a preliminary report.

By studying the status of 151 women leprosy patients (24 from a leprosy asylum and 127 attending urban leprosy centres at Goa and Bombay), it was noticed that a sizeable proportion experienced problems in society ascribable to the disease especially at the initial stages of the disease. However, most of them seemed to have managed to settle well in their families as housewives subsequently. Younger women leprosy patients expressed the need for financial assistance for completing their own education and for starting small scale business. The older women were more interested in educating their children.

Psychosocial stress in Hansen's disease: a comparison with other chronic illness patients.

The present study investigated stress, as measured by a standardized life events scale, in Hansen's disease (HD) patients and as compared to renal patients and non-illness controls. Statistical analyses indicated that experimental groups were well matched on variables of age, sex, and marital status. Regarding analyses of the life events scale, significant differences were found across groups for negative change scores and total change scores. Post-hoc analyses revealed that the outpatient HD group and the renal group were significantly different from the non-illness controls. The results are viewed as support for the hypothesis that HD patients are similar to other chronic illness groups in terms of psychosocial characteristics.

Socio-economic experiences of leprosy patients.

225 adult leprosy patients were interviewed to study their socio-economic experiences, about various aspects of their lives. It was observed that 17.34%, 14.33% and 45.78% of patients experienced negative reactions from their families, spouses and society members, respectively. Out of 79 unmarried patients, 53 (67.1%) attributed leprosy as the only reason for not getting a partner for marriage. Out of 146 married patients, 34 (23.3%) were not living with their spouses; this also included 9 (6.2%) patients, deserted by their partners. Leprosy uprooted 44 (13.55%) patients from their residences, of whom 27 settled in leprosy village/settlement. The occupational status of 104 (46.22%) patients was adversely affected due to leprosy, of whom 43 became dependents and 17 beggars. Monthly income of 115 (51.1%) patients reduced to the extent of 84%, after getting leprosy. The social prejudice and deformities due to leprosy, have played key roles in socio-economic deterioration of patients. The leprosy control programme (LCP) need to be implemented more efficiently and effectively, with active involvement of communities. The socio-medical units, if included in LCP, may be utilized more effectively to prevent the socio-economic dehabilitation of patients, as well to tackle the abnormal psycholygical behaviours of patients.

A sociological study of leprosy cases in the Gandhi Kusth Ashram, Jodhpur (Rajasthan).

A Sociological study was carried out in respondents of a Lepers Colony (Gandhi Kusth Ashram), Jodhpur. An attempt was made to study the knowledge about causation of Leprosy, age at onset, and treatment. The reason for leaving their original place of origin (South India) was enquired. A majority (95.2%) of patients were Hindus, had onset of leprosy in the age group of below 20 years to 30 years (80.94%) had a literacy rate of 6.3% only. A history of contact with a case of leprosy could be traced in 38% but within the family only in 11.9%. The infection as a cause of leprosy was recognised only by 3.57% patients but a majority had no idea about aetiology (70.24%) or thought it to be due to punishment for past sins (3.57%) or due to supernatural causation (1.19%). Most of them (70.2%) left home for fear of losing family prestige and to hide the disease (25.00%) or hatred of other family members (4.76%).

[The new marriage law and planned birth].

PIP: The New Marriage Law was passed during the Fifth National People's Congress. It raised the minimum marriage age from 20 years for men and 18 years for women stipulated by the Old Marriage Law to 22 years for men and 20 years for women. It also differs from the Old Marriage Law in that it strengthens its encouragement of late marriage, late births and birth control, emphasizes that birth planning is the duty of both husband and wife, and prohibits marriage of collateral blood relations within 3 generations (the Old Marriage Law's standard was "to follow custom"). A third of the provisions of the New Marriage Law concern family planning, of which the first 3 clauses are the most important: 1) To set guidelines for the relationship between marriage and family: the New Marriage Law is concerned with not just the family, but also marriage and birth and expects all citizens to comply with and protect these standards. 2) To implement freedom in marriage--equality for men and women; to protect the rights of women, children, and the aged; to implement planned birth. 3) To prohibit any action that prevents freedom of marriage, such as marriage on a mercenary basis and to prohibit financial profit from marriages. Other clauses include: 1) direct blood relations and victims of leprosy or other diseases determined unmarriageable by the medical profession are prohibited from marriage; 2) after marriage registration and with the mutual agreement of both parties, either partner can become a member of the other's family; children can take either parent's surname; both partners have mutual rights of inheritance, as do parents and children. In Heilungjiang Province, data from September 1980 show that 87.5% of its fertile women used contraceptives. From January to September 1980 85.6% married late; the rate of applications for One Child Certificates was 80%. By 1979 the rate of natural population increase was 10.14/1000.^ieng