Understanding leprosy reactions and the impact on the lives of people affected: An exploration in two leprosy endemic countries.

BACKGROUND: Leprosy reactions, Type-1 and erythema nodosum leprosum, are immune-mediated complications of leprosy, which play a significant role in the morbidity associated with the disease. A considerable amount of literature has been published on the impact of leprosy in general but few studies focus specifically on leprosy reactions. This study aimed to investigate the impact of leprosy reactions on physical, psychological, and social aspects of the lives of people affected by analysing their life experiences and perspectives about leprosy reactions. METHODS/PRINCIPAL FINDINGS: This qualitative study involved people affected by leprosy reactions and their family members in two leprosy endemic countries. The data were collected through 66 interviews and 9 focus group discussions (4-6 participants each) in Surabaya, Indonesia, and Purulia, India. Content analysis and conversational analysis were performed. This study found that both types of leprosy reactions were perceived as an unpredictable and painful condition. Leprosy reactions restricted physical activities of the participants, such as going to bathroom, sleeping, eating, and cooking. In the interviews, the respondents expressed a range of emotions and feelings including confusion, sadness, anxiety, and anger. Some recounted that they felt stigmatized and lost opportunities to socialise and earn money. Differences between the two settings were identified. The majority of Indonesian participants preferred to stay at home, and some concealed the diagnosis of leprosy, while most of the Indian respondents continued working up to the time of hospitalization. CONCLUSION: Leprosy reactions are a distressing complication of leprosy and adversely affect the lives of those affected. Individuals reported physical discomfort, distress, anxiety, stigma, and financial hardship and these negative impacts in the physical, psychological, and social spheres reinforced each other. These findings provide important information about a need for early detection and sustained commitment to follow-up care for people with a history of leprosy reactions. More research on new drugs for reactional episodes, tools to measure knowledge, attitude, and practice, and costing study on leprosy reactions treatment are needed. We recommend the development and testing of holistic strategies to improve the management of leprosy reactions.

The life experience of leprosy families in maintaining interaction patterns in the family to support healing in leprosy patients in Indonesian society. A phenomenological qualitative study.

BACKGROUND: Family involvement in overcoming the severity of leprosy is very important in the life of leprosy sufferers in communities who experience the clinical and, psychological, social and behavioral consequences of the disease. However, this need, psychosocial, is felt to be not optimal. This study is to identify how the experiences of family members as caregivers provide assistance to individuals with leprosy in improving healing and maintaining patterns of interaction in the family. METHODS: The design uses qualitative research with in-depth, face-to-face interviews with family members in a semi-structured manner with the hope of obtaining complete data. Using purposive sampling with Participatory Interpretative Phenomenology analysis, there are 12 families with 15 family members consisting of 4 men and 11 women. RESULTS: This study produced a family theme that tried to follow what would happen to individuals with leprosy, with four sub-categories: 1) Using various coping alternatives to recognize the disease, 2) Family members in the shadow of leprosy, 3) Trying to empathize with other family members. sick, 4) Caring for the emotional response of the family and seeking support. CONCLUSIONS: This analysis shows that deficiency in cognitive aspects can be closed by maintaining a lifestyle in the family through efforts to understand, support, establish communication, increase maximum involvement in restoring self-confidence, especially in individuals with leprosy with psychosocial problems in the family. The results of this study can be used as psychosocial support in maintaining communication between family members to support treatment programs and accelerate the recovery of leprosy.

Strengthening individual and family resilience against leprosy-related discrimination: A pilot intervention study.

BACKGROUND: Leprosy and leprosy-related stigma can have a major impact on psychosocial wellbeing of persons affected and their family members. Resilience is a process that incorporates many of the core skills and abilities which may enable people to address stigma and discrimination. The current study aimed to develop and pilot an intervention to strengthen individual and family resilience against leprosy-related discrimination. METHODOLOGY: We used a quasi-experimental, before-after study design with a mixed methods approach. The 10-week family-based intervention was designed to strengthen the resilience of individuals and families by enhancing their protective abilities and capacity to overcome adversity. The study was conducted in two sites, urban areas in Telangana state, and in rural areas in Odisha state, India. Persons affected and their family members were included using purposive sampling. Two questionnaires were used pre-and post-intervention: the Connor-Davidson Resilience Scale (CD-RISC, maximum score 100, with high scores reflecting greater resilience) and the WHOQOL-BREF (maximum score of 130, with higher scores reflecting higher quality of life). In addition, semi-structured interviews were conducted post-intervention. Data were collected at baseline, a few weeks after completion of the intervention, and in the Odisha cohort again at six months after completion. Paired t-tests measured differences pre- and post- intervention. Qualitative data were thematically analysed. FINDINGS: Eighty participants across 20 families were included in the study (23 persons affected and 57 family members). We found a significant increase in CD-RISC scores for persons affected and family members from Odisha state (baseline 46.5, first follow-up 77.0, second follow-up 70.0), this improvement was maintained at six-month follow-up. There was no increase in CD-RISC scores post-intervention among participants from Telangana state. WHOQOL-BREF scores were significantly higher at follow-up for persons affected in both states, and for family members in Odisha state. No families dropped out of the study. In the qualitative feedback, all participants described drawing benefit from the programme. Participants especially appreciated the social dimensions of the intervention. CONCLUSION: This pilot study showed that the 10-week family-based intervention to strengthen resilience among persons affected by leprosy and their family members was feasible, and has the potential to improve resilience and quality of life. A large-scale efficacy trial is necessary to determine the effectiveness and long-term sustainability of the intervention.

The impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life: A qualitative study in Northwest Ethiopia.

BACKGROUND: Several studies have shown that leprosy, podoconiosis and lymphatic filariasis impact individual quality of life. In contrast, family quality of life has not received as much attention despite evidence that families are also affected. This is especially relevant given the crucial role of the family in most societies around the world. This study looks at the impact of leprosy, podoconiosis and lymphatic filariasis on family quality of life. METHODOLOGY: The study used a cross-sectional design with a qualitative approach. Both semi-structured interviews and focus group discussions were conducted. Participants, persons affected and their family members, were selected by purposive sampling. Data were collected between August and November 2017 in Awi zone, Northwest Ethiopia and analysed by three independent researchers using open, inductive coding and content analysis. RESULTS: A total of 86 participants were included in this study: 56 participants in the in-depth interviews and 30 participants in the focus group discussions. We found that participation restrictions, reduced productivity and marginalisation were common. In addition, discrimination in the communities occurred often, often extending to family members of persons affected. Divorce and difficulties in finding a spouse were common for persons affected and their family members. Many persons affected reported mental health problems. While most people got social and physical support from their families, there were a few exceptions. In particular, persons with younger children seemed to lack social support. Having to provide for their affected family member sometimes caused stress, school dropouts and an additional workload. Financial problems and loss of livelihood were reported by almost all participants. CONCLUSION: This study revealed that leprosy, lymphatic filariasis and podoconiosis have an effect on several dimensions of family quality of life. Many problems reported related to stigma and poverty.

What stops people completing multi-drug therapy? Ranked perspectives of people with leprosy, their head of family and neighbours--across four Indian states.

UNLABELLED: Summary To maximise successful completion of multi-drug therapy (MDT) and optimise treatment outcomes for people with leprosy, it is vital to understand the relative importance of perceived factors which prevent them from completing the required number of doses in time. OBJECTIVE: To explore personal, family, social, community, attitudinal, practical, geographical, cultural and traditional factors which may influence adherence to treatment, a two-phase study was undertaken comprising issue identification via focus groups, and a ranking exercise via individual interview. STUDY DESIGN: The perspectives of 895 respondents (320 people affected by leprosy who were not able to complete treatment, 302 of their 'operational heads of family', and 273 of their nearby community members) across four states of India namely i.e. Andhra Pradesh (Salur), Chhattisgarh (Chandkhuri), Maharashtra (Kothara) and Uttar Pradesh (Barabanki) were collected, using a checklist interview method. RESULTS: Findings suggest that seeing positive changes in their symptoms as well as not seeing improvement can lead to non-completion of MDT. Problems with scheduling and travel expenses were also key issues. Better management of the expectations of people affected by leprosy and reducing the burden of treatment may be important strategies. The importance of stigma and poverty were noted through a number of issues, none of which were particularly highly ranked. CONCLUSIONS: The nature and diversity of perceived issues identified across respondent type and particularly region, suggest that the determinants of adherence are complex and multi-factorial. More community based approaches with greater coordination at the community level are recommended.

The tangled web: a study of knowledge and attitude towards leprosy from a tertiary care hospital in India.

Leprosy stands tall among the oldest and most misunderstood diseases of man. Today leprosy is easily treated; unfortunately, persistent misconceptions result in unnecessary stigmatization. Thus the present study aims to assess the knowledge and attitudes regarding leprosy in people with and without leprosy, factors affecting the same; and to study their relationship with treatment status in leprosy patients. Detailed knowledge and attitude questionnaires were administered to 260 subjects (100 leprosy patients, 60 family members of leprosy patients and 100 people with non-leprosy skin diseases) at AIIMS, New Delhi. Crude scores based on subject responses were used for inter-group comparisons. Leprosy patients had significantly higher knowledge scores than family members who in turn scored significantly higher than people with other skin diseases. Leprosy patients had fair knowledge about common symptoms, but awareness about MDT was low. Delayed diagnosis and non-compliance were common. Attitudes did not differ between groups. Fear of the leprosy-affected and reluctance for physical contact, food sharing and marriage were prominent. Treated leprosy patients had the highest knowledge scores. Higher education and greater knowledge scores were positive predictors of attitude. Knowledge and attitude scores showed significant positive correlation. Knowledge and attitude towards leprosy are unsatisfactory. Improving knowledge may help to improve attitudes. In the post-elimination era, we must incorporate education about the disease into routine care of leprosy patients and focus on community education about leprosy.

Leprosy among adolescents in Kolkata, India.

Leprosy, manifesting during adolescence when significant physical and emotional changes are taking place, poses further stress and strain both on the individual and on the family. Based on hospital records, focus group discussions and in-depth interviews, data on 258 adolescent leprosy patients seen at a leprosy referral hospital in Kolkata, India, are presented. The male-female sex ratio was 1.93:1, 56.6% were multibacillary patients and 13.2% had grade 2 disability. At the time of final follow up, 10% of PB and 33% of MB patients had already discontinued treatment. The commonest complication was reaction (14.5%). Adolescents were still dependent on their parents for health matters. Data obtained from questionnaires confirmed the role of social stigma in hiding, delay in starting of MDT and defaulting. Frequent hospital admissions resulted in loss of jobs and disruption of studies and caused psychological disturbances. It is critical to identify and treat adolescent leprosy on a priority basis. Health education and counselling programmes must be more focused and acceptable. Further research is necessary.

Casuistica de pacientes de enfermedad de Hansen evaluados y estudiados en Pabellón Padre Ferrís, Sanatorio San Francisco de Borja. Fontilles

Se llevó a cabo un estudio de casuística en casi el total de los pacientes ingresados en el Sanatorio San Francisco de Borja, Fontilles. Primero se estudiaron las reacciones del paciente y de la familia; actitudes y compromisos. Segundo, se estudió la aceptación al tratamiento, la actitud a la internación hospitalaria y la reacción familiar al tratamiento específico. Tercero, se estudian específicamente la conducta y reacciones psíquicas y emocionales en los pacientes. Cuarto, se estudió si había o no problemas de personalidad y/o psiquiátricos existentes antes y/o aparecidos después del diagnóstico de lepra. Como conclusión, se hace correlaciones a la psicopatología como consecuencia de la enfermedad de Hansen, así como neurosis existentes, resentimiento, estrés, aversión a la enfermedad, depresiones, suicidio y otras formas, reacciones sociales, estigma y rechazo. También reacciones como resultado de la estimulación psicointelectual y del tratamiento farmacológico durante la hospitalización, especialmente de los pacientes pasivo-dependientes, pseudo narcisistas, paranoides y esquizofrénicos; y de estos últimos su afinidad con la lepra (AU)

AIDS in southern Thailand: stories of krengjai and social connections.

HIV-disease in southern Thailand has reached epidemic proportions. The declining Thai economy, coupled with social discrimination among people with the disease, has adversely affected individual, family and community krengjai. Among Thai's, krengjai is used to describe social order, avoid personal conflict, and maintain harmony in relationships. Using the framework of story, this narrative study explores the experiences of five individuals with HIV-disease and their tenuous relationship with krengjai.

PIP: This narrative study explored the experiences of five Thais with HIV infection and their tenuous relationship with society. In Thailand, HIV parallels the fear and mistrust of society, and is synonymous with leprosy and other physically debilitating diseases. During nonstructured interviews, the respondents were openly allowed to tell their story, and the central theme presented by the participants were connections to family between past and present, with little regard for the future. The need to incorporate family to social networks and fulfill a social purpose was likewise emphasized. The results also revealed that despite the disintegration of social networks, krengjai (social order) remains the core theme in the establishment of social patterns. Thus, this study underscores the importance of providing a holistic and systematic effort by professional nursing organizations to promote family and community strengths by encouraging krengjai. This effort would be the most effective mechanism in reducing patterns of AIDS morbidity and mortality and enhancing the health of women and children worldwide.

[Leprosy and sexuality: living with a difference]. / Hanseníase e sexualidade: convivendo com a diferença.

The present article is based on a research that analysed the social effects of leprosy in men and women, identifying the effects in their family life. 10 men and 10 women with leprosy registered in a specific health service were part of this study. The methodology was qualitative, through semi-structured interviews. Data analysis pointed out the fact of the disease perceived as a reason for family disorders and, also, impairing these subjects sexual relationships.

[Identification of psychosocial problems in patients with Hansen's disease by analysis of computerized resources]. / Identificação de alguns problemas psicossociais em portadores de Hanseníase utilizando para a análise os recursos da informática.

The purpose of this study was to identify leprosy patients' psychosocial problems experienced after they were informed about their diagnosis. We focused attention upon concerns and behavioral changes related to their families, friends, jobs and to themselves. Data were obtained by a two opened questions interview and they were analysed with the aid of artificial intelligence techniques. These intelligence tools were used to discover the most frequent words, phrases and concepts existing in the interview reports. The results showed that after being informed about their diagnosis, the majority of the patients referred some concerns and behavioral changes related to their families, friends, jobs and to themselves. The main concerns of the population were related to the disease (transmission, the treatment extension, the possibility of hospitalization, the uncertainty about the cure). These facts induced some of the patients to avoid telling people about the disease they have.

An investigation of attitudes, beliefs and behaviour of leprosy patients, family members and PHC workers towards multidrug therapy in Yangzhou and Dongtai Districts of China.

To improve the operational efficiency of multidrug therapy (MDT) implementation in rural areas, an investigation into the attitudes, beliefs and behaviour of leprosy patients and their family members as well as primary health care (PHC) workers towards MDT was carried out in Yangzhou and Dongtai Districts of China. A sample of 370 leprosy patients, 594 family members and 730 PHC workers was interviewed or investigated individually using questionnaires. The results showed that: 1, the presently used MDT is acceptable to a wide range of patients although a small number of patients have various problems in their treatment; 2, the patients' habit in daily drug administration, their awareness of the risk of default and confidence in MDT have a positive influence in increasing drug compliance; and 3, the supervision and encouragement of family members to patients' treatment which is associated with their knowledge on MDT is also beneficial to patients' drug compliance. However, only half of the PHC workers had a basic knowledge of MDT and a desire to participate in MDT implementation, a finding which clearly calls for urgent attention and improvement. In order to ensure the effective implementation of MDT, there is a need to educate leprosy patients and their family members as well as PHC workers to establish the patients' correct awareness of MDT, obtain the family support and motivate the PHC workers.

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, acceptance and social inequality: a study of the deformed leprosy patients and their families.

Though the impact of social inequality on health conditions is widely known, its impact on the chronic and stigmatized disease, leprosy, has received little attention. Deformity sometimes leads to disabilities and to handicaps causing problems to the patient and his family. In this paper an attempt has been made to understand the impact of social inequality, prevalent in the form of the caste system in India on the deformed leprosy patients and on their families. This impact was examined in terms of the problems faced by the patients. A sample of 150 deformed patients and their families, drawn from two districts in Tamil Nadu, was selected for the study. About 57% of the deformed patients experienced their deformity as a handicap which caused social and economic problems while the rest did not. Of the three caste groups, the Lower Caste group experienced more severe economic problems while the Upper Caste group faced more social problems. The extent of acceptance of deformed patients in their family varied significantly among those facing and not facing problems due to their deformity. The deformed patients without any handicap were accepted in a large majority of their families (82%) regardless of their caste status. In contrast the deformed but handicapped patients were accepted differentially among the three caste groups with the Upper group accepting them in most of their families (80%) while in the Lower group much less number of families (54%) did. All the families of the deformed but not handicapped patients desired to keep their patients till their death irrespective of their caste status. On the contrary, while all the families in the Upper Caste group expressed their willingness to keep their handicapped patients in the family till their death, 10% in the Middle and 22% in the Lower Caste groups did not want to do so. This suggests the gradual marginalization, rejection and dehabilitation of the affected. Thus, one's caste status can be a broad indicator of the nature and the extent of handicaps and acceptance in the family. This factor needs to be appropriately taken care of for rehabilitation and disability management in leprosy control programmes.

Social problems of women leprosy patients--a study conducted at 2 urban leprosy centres in Delhi.

Leprosy seems to afflict women less commonly than men, but for cultural reasons this difference may be more apparent than real. Unfortunately, the effects are as equally devastating, if not more so, in women than in men. This study, carried out at the Urban Leprosy Centres of Safdarjung Hospital and Dr Ram Manohar Lohia Hospital in Delhi, showed that the impact of stigmata attached to leprosy had more effect on educated women belonging to a higher socioeconomic group than on less fortunate women. Discriminative attitudes were more common in joint than nuclear families. Although many got support from their families, the disease had definite psychological effects. Because of the fear of infecting the family members, women sufferers kept themselves aloof and were constantly worried about divorce. Fear of social ostracism prevented the disclosure of disease to the community. Deformities and disabilities led to a deterioration in their functional capabilities and their psychological state of mind. Pregnancy did not affect regularity of treatment. Many women needed an escort to attend the clinic. Solutions to minimize some problems have been suggested.