Investigating the sustainability of self-help programmes in the context of leprosy and the work of leprosy missions in Nigeria, Nepal and India: a qualitative study protocol.

INTRODUCTION: Leprosy occurs among very poor people who may be stigmatised and pushed further to the margins of society. Programmes to improve social integration and stimulate economic development have been implemented to help break the vicious cycle of poverty, reduced quality of life and ulcer recurrence. These involve forming groups of people, with a common concern, to provide mutual support and form saving syndicates-hence the term 'self-help groups' (SHGs). While there is literature on the existence and effectiveness of SHGs during the funded periods, little is known about their sustainability. We aim to explore the extent to which SHG programme activities have continued beyond the funding period and record evidence of sustained benefits. METHODS AND ANALYSIS: In India, Nepal and Nigeria, we identified programmes funded by international non-governmental organisations, primarily aimed at people affected by leprosy. In each case, financial and technical support was allocated for a predetermined period (up to 5 years).We will review documents, including project reports and meeting minutes, and conduct semistructured interviews with people involved in delivery of the SHG programme, potential beneficiaries and people in the wider environment who may have been familiar with the programme. These interviews will gauge participant and community perceptions of the programmes and barriers and facilitators to sustainability. Data will be analysed thematically and compared across four study sites. ETHICS AND DISSEMINATION: Approval was obtained from the University of Birmingham Biomedical and Scientific Research Ethics Committee. Local approval was obtained from: The Leprosy Mission Trust India Ethics Committee; Federal Capital Territory Health Research Ethics Committee in Nigeria and the Health Research Ethics Committee of Niger State Ministry of Health; University of Nigeria Teaching Hospital and the Nepal Health and Research Council. Results will be disseminated via peer-reviewed journals, conference presentations and community engagement events through the leprosy missions.

Health literacy among self-help leprosy group members reduces stereotype endorsement and stigma-related harm in rural Nepal.

There is increasing appreciation that group memberships can have both beneficial and damaging impacts on health. In collaboration with Nepal Leprosy Trust (NLT), this longitudinal study explores a group-based approach to stigma reduction among people affected by leprosy in rural Nepal (N = 71)-a hard to reach and underrepresented non-WEIRD population. Informed by the 'social cure' literature, and the progressive model of self-stigma, we use a longitudinal design. We found that a sense of belonging to a self-help group can facilitate education in terms of health literacy, and over time these two factors also have impacts on participants stigma. Specifically, self-help group belonging predicted improvements in health literacy, leading to reduced endorsement of negative stereotypes and thus less stigma-related harm among people affected by leprosy. The study offers promising evidence that group-based interventions, which support health education, can reduce the harmful impact of stigma in very challenging contexts.

Depression and mental wellbeing in people affected by leprosy in southern Nepal.

BACKGROUND: Leprosy, a leading cause of disability, remains endemic in southern Nepal. Alongside physical impairment and stigmatization, many people affected by leprosy suffer from mental health problems. OBJECTIVES: This study had two objectives: (a) Establishing a baseline level of mental wellbeing and depression among people affected by leprosy in southern Nepal, and (b) Examining factors that influence mental wellbeing and depression in this target group. METHODS: A cross-sectional survey was conducted using three interview-administered questionnaires measuring level of depression (PHQ-9), mental wellbeing status (WEMWBS) and level of stigma (5-QSI-AP). Random clustering sampling was used to include leprosy-affected people from Self Help Groups (SHGs) and the reference group was matched based on socio-demographic characteristics. All participants were adults with no additional major morbidities. A sample of 142 persons affected by leprosy and 54 community controls were included. RESULTS: People affected by leprosy participating in SHGs had a significantly lower level of mental wellbeing and higher level of depression than the general population. Both mental wellbeing and depression were influenced by gender and the level of stigma. In addition, the level of depression was associated with the disability grade of leprosy-affected people. CONCLUSION: Leprosy-affected people need mental health-care interventions at different organizational levels, with attention to identifying individuals at increased risk for mental health problems or with additional needs. These findings highlight the demand for further research on specific interventions to improve the mental health of leprosy-affected people.

Percepção de pacientes com hanseníase acerca dos grupos de autocuidado / Perception of patients with lepra about the self-care groups

Objetivo: analisar a percepção dos pacientes com hanseníase acerca dos grupos de apoio ao autocuidado. Método: estudo qualitativo, descritivo, realizado em unidade de saúde de referência para tratamento da hanseníase com 11 pacientes. Os dados foram coletados por meio de entrevista semiestruturada, e realizada a Técnica de Análise de Conteúdo. Resultados: os achados foram classificados em duas categorias: << Importância do autocuidado para a prevenção de incapacidades físicas e psicossociais e << Contribuições dos grupos de apoio ao autocuidado no enfrentamento das dificuldades e limitações das pessoas atingidas pela hanseníase >>. Conclusão: os grupos de apoio ao autocuidado proporcionam a redução de incapacidades físicas, por meio de medidas de prevenção, educação em saúde, adesão ao autocuidado e tratamento. Além disso, esses grupos elevam a autoestima, proporcionam a superação de preconceito e possibilitam o vínculo terapêutico entre pacientes e profissionais. Este estudo auxilia no enfrentamento das dificuldades e limitações de pessoas atingidas pela hanseníase.(AU)

Assessing the feasibility of integration of self-care for filarial lymphoedema into existing community leprosy self-help groups in Nepal.

BACKGROUND: Lymphatic filariasis (LF) and leprosy are disabling infectious diseases endemic in Nepal. LF infection can lead to lymphoedema and hydrocoele, while secondary effects of leprosy infection include impairments to hands, eyes and feet. The disabling effects of both conditions can be managed through self-care and the supportive effects of self-help groups (SHGs). A network of SHGs exists for people affected by leprosy in four districts in Nepal's Central Development Region, however no such service exists for people affected by LF. The aim of this study was to determine the feasibility of integrating LF affected people into existing leprosy SHGs in this area. METHODS: A survey was conducted using a semi-structured questionnaire to elicit information on: (i) participant characteristics, clinical manifestation and disease burden; (ii) participants' knowledge of management of their condition and access to services; and (iii) participants' knowledge and perceptions of the alternate condition (LF affected participants' knowledge of leprosy and vice versa) and attitudes towards integration. RESULTS: A total of 52 LF affected and 53 leprosy affected participants were interviewed from 14 SHGs. On average, leprosy affected participants were shown to have 1.8 times greater knowledge of self-care techniques, and practiced 2.5 times more frequently than LF affected participants. Only a quarter of LF affected participants had accessed a health service for their condition, compared with 94.3% of leprosy affected people accessing a service (including SHGs), at least once a week. High levels of stigma were perceived by both groups towards the alternate condition, however, the majority of LF (79%) and leprosy (94.3%) affected participants stated that they would consider attending an integrated SHG. CONCLUSIONS: LF affected participants need to increase their knowledge of self-care and access to health services. Despite stigma being a potential barrier, attitudes towards integration were positive, suggesting that the SHGs may be a good platform for LF affected people to start self-care in this area. TRIAL REGISTRATION: This is not a registered trial.

Quality of life in vitiligo patients.

Quality of life is defined by the World Health Organization as "individuals' perceptions of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns." Often overlooked in the past, it is nowadays considered, in a more holistic view of medicine, a decisive factor to understand the impact of diseases and improve the quality of medical care. Such evaluation is particularly relevant for dermatological diseases, because visibility of the lesions can significantly affect self-esteem and social relationships. Vitiligo represents an emblematic case: often disfiguring and located in visible areas, confused in the past (and, in many world regions, even in the present) with leprosy, often perceived by physicians as a harmless, purely cosmetic problem, it significantly decreases the quality of life of affected persons. After a brief overview on definition, usefulness and methods for the assessment of quality of life, the authors examine the peculiarities of its relationship with skin diseases, particularly vitiligo. The state of the art of knowledge and research in this field is presented, together with data showing usefulness and positive results of a multidisciplinary approach, which adequately keeps into account perceived quality of life, on patient's satisfaction, adherence to treatment protocols and, ultimately, better outcome of treatments. In this context, an important role can be played by support communities, groups of patients and dedicated associations and societies, connected through modern communication networks like the Internet.

Funding for self-employment of people with disabilities. Grants, loans, revolving funds or linkage with microfinance programmes.

In 2005, Handicap International commissioned a study on the practices of funding for self-employment activities of people with disabilities (PWD), with a special focus on access to microfinance. The overall goal of the study was to produce a framework document highlighting good practices, strategies, tools and operational methods that guarantee the efficiency and sustainability of self-employment projects for PWDs. The first phase of the study consisted of a literature review and a worldwide survey. Through this first phase the research team identified the most innovative programmes for further analysis through field visits. In the second phase field visits were conducted in Afghanistan, Bangladesh, Ethiopia, India, Kenya, Nicaragua and Uganda, while regional workshops were organised in Dhaka and Nairobi. Phase three involved consolidation and analysis of the information and finally drafting of the framework document. This paper summarises the findings and good practices as presented in the framework document, based on the results of the literature review, the survey and the field research. It is not a scientific paper, i.e. it doesn't contain a discussion of the literature reviewed or systematic reference to sources, the same as the document on which it is based, as it is primarily meant for 'practitioners'. A main finding of the study was that there is no single 'best solution' to funding of self employment activities. While inclusion of PWDs in existing microfinance institutions (MFIs) is the preferred strategy, guaranteeing efficiency, sustainability and future access to funding for the target group, it was found that in reality many PWDs do not have access to microfinance programmes. This can be explained by stigmatisation of PWDs by staff of MFIs, who do not believe in their income earning and repayment capacity, and self-exclusion by PWDs. To fight against it projects have been set-up linking MFIs with programmes for PWDs, focusing on better information exchange between both parties respectively on disability for MFIs and the characteristics of microfinance for programmes for PWDs. Other programmes experiment with special credit lines or guarantee funds, placed at the disposal of MFls and earmarked for loan disbursement for PWDs, to facilitate their inclusion. Another reason for non-inclusion is the vulnerability of many PWDs. Many of them have no prior business experience, while many MFIs only provide loans to clients with an existing business. Vocational and/or business training and raising of their self-confidence, to be assured by a programme for PWDs, is often required prior to setting-up of a self-employment activity and taking a loan. If not prepared to run a 'business' successfully, taking a loan will present a too great a risk for themselves, getting indebted, and for the MFI. 'Start-up' grants for business-starters and revolving funds managed by PWD programmes, are other approaches practised by PWD programmes, of which the pros and cons are discussed in the study. A major weakness of many MFIs is that they do not reach the most vulnerable clients, including many of the PWDs, and their weak presence in rural areas especially in Africa. MFls have to look for innovative approaches to deepen their outreach. The self-help group approach in India, starting with the clients' own savings from which loans can be disbursed to the group members while linking the well-performing groups to banks for access to bank loans, is such a new approach. It is practised by The Leprosy Mission Trust in India. In Africa, some international NGOs started with similar 'community based saving and lending groups'.

Awareness about the persons with disability act among leprosy patients and other disabled persons.

To assess the level of awareness about the different provisions of the Persons with Disability Act (PWD Act) among leprosy patients and other disabled, 233 disabled persons from the self-help groups formed by Vadathorasalur Leprosy Control Unit have been interviewed using a structured interview checklist. The results show that 74.7% of the respondents were aware that identity cards are available for the disabled, 56.2% were aware of the free education benefit to the disabled, as low as 35.6% were aware of the scholarships, 33% knew about the employment reservations, 24.9% heard about the housing scheme of the government for the disabled, but 24.5% only knew about law against discrimination, 31.8% came in contact with institutions for the severely disabled and only 16% were aware of the unemployment allowance to the disabled. The level of awareness is low among women with regard to all components of the Act. It was found that students studying up to secondary level were not aware of the availability of scholarships and free education, which needs to be seriously looked into, especially by educational institutions. The level of formal education played a significant role in increasing awareness about the Act among literates. The knowledge is low among persons of all occupations. The study showed that there is a great need for an educational intervention programme to publicize the provisions of the Act among the disabled and their families.

Interventions to address the stigma associated with leprosy: a perspective on the issues.

This paper presents a perspective on stigma as an effect of leprosy. It identifies some of the strengths and weaknesses of current approaches to stigma reduction in leprosy and presents a rationale for considering alternative strategies. It is suggested that models used to explain health behavior in developed societies are inappropriate for explaining leprosy stigma or for developing strategies to address it. The author recommends due consideration of the alternative logic that characterizes cultural belief systems in countries where leprosy is a challenge. Criticism of the common practice of information dissemination as a strategy to address leprosy stigma is defended and the merits and limitations of an integrated health service in India is discussed. The author defends the suggestion that the principal objective of stigma interventions should be "normalization". An example of a Nepalese project based on empowerment theory is given to demonstrate how the transformation of identity from outcast to positive change agent, can effect "normalization".

The experience of self-care groups with people affected by leprosy: ALERT, Ethiopia.

This paper describes the development of self-care groups in Ethiopia by ALERT, and the successes and failures experienced in the process. The groups were started in 1995 in response to two main problems, the increasing number of people dependent on ALERT to heal their wounds despite years of health education, and the limited financial resources of ALERT for wound healing supplies. By December 1999, there were a total of 72 established groups. Group membership was voluntary. There have been a number of positive outcomes. Group members have taken up responsibility for managing and monitoring their own wounds and supplying their own wound healing materials. More attention is paid to their personal hygiene and personal appearance. They also report increased confidence to participate in society, restored dignity and self-respect, and a sense of belonging within the community. In addition, some members have started to pay more attention to their local environmental hygiene by building pit latrines and waste disposal sites. The ALERT staff involved in this initiative had to change their role from that of a leprosy service provider to a self-care group facilitator, but not all were successful in making this transition. The remaining challenge for the programme is sustainability and further development through the National Tuberculosis and Leprosy Control Programme, The Ethiopian National Association for Ex-Leprosy Patients and possibly other organizations too.

Participaçäo: possibilidade na busca da cidadania para o portador de hanseníase? / Participation: possibilities of leprosy patients for searching citizenship

O estudo objetivou conhecer as percepçöes dos portadores de Hanseníase, do Programa de Hanseníase da Secretaria da Saúde de Itajaí/SC, sobre sua participaçäo em um grupo de educaçäo popular, no período 92/94. Utilizando a abordagem qualitativa, com entrevista guiada aos participantes do grupo, constatamos que a motivaçäo para participarem foi a necessidade de conhecer outros portadores e sentirem-se valorizados. Avaliam a experiência vivenciada como algo importante, que possibilitou o contato com lideranças nacionais e regionais do MORHAN (Movimento de Reintegraçäo de Pessoas atingidas pela Hanseníase), ampliou o conhecimento em relaçäo à doença e minimizou o estigma, aumentando o espaço de aceitaçäo entre os membros do grupo.

Multidrogaterapia em hanseníase: trabalho com grupos de pacientes / Multidrugtherapy in leprosy: work with patien's groups

Os autores descrevem uma abordagem terapêutica para hanseníase segundo os esquemas para multitrogaterapia da OMS - DNS - MS, utilizando o trabalho com grupos de pacientes, enfatizando o aspecto educativo. A metodologia foi conduzida por uma equipe multiprofissional, foram conseguidos resultados como 100% de assiduidade e regularidade no tratamento, 100% de controle individual e plena aceitaçäo do trabalho