A study on community-based approaches to reduce leprosy stigma in India.

There is a global awareness that reduction of leprosy stigma is not at par with the technological developments and the resulting cognitive changes pertaining to leprosy, which can be attributed to lack of active community participation in the programmes. With a major aim of identifying the best methods using active participation of the society, the Leprosy Mission in India initiated a multi-state community-based interventional trial of leprosy stigma reduction in 2 similar rural blocks located beyond 25 km. from the three hospitals, from 3 states, at Faizabad in Uttar Pradesh, Purulia in West Bengal and Champa in Chhattisgarh of India during 2005. A baseline survey was done which confirmed a high level of leprosy stigma. A stigma reduction organizing committee (SROC) in each village, thus a total of 60 SROCs from 3 states @ 10 from each block were formed. One trained social worker appointed by the project as community organizer in each block acted as a facilitator for all the stigma reduction activities taken up by the committees. The outcome of the project shows, the SROCs' interventions are well accepted by the communities. Education and counseling through SROC members in local circumstances are very much feasible and effective.

The Participation Scale: measuring a key concept in public health.

PURPOSE: To develop a scale to measure (social) participation for use in rehabilitation, stigma reduction and social integration programmes. METHOD: A scale development study was carried out in Nepal, India and Brazil using standard methods. The instrument was to be based on the Participation domains of the International Classification of Functioning, Disability and Health (ICF), be cross-cultural in nature and assess client-perceived participation. Respondents rated their participation in comparison with a "peer", defined as "someone similar to the respondent in all respects except for the disease or disability". RESULTS: An 18-item instrument was developed in seven languages. Crohnbach's alpha was 0.92, intra-tester stability 0.83 and inter-tester reliability 0.80. Discrimination between controls and clients was good at a Participation Score threshold of 12. Responsiveness after a "life change" was according to expectation. CONCLUSIONS: The Participation Scale is reliable and valid to measure client-perceived participation in people affected by leprosy or disability. It is expected to be valid in other (stigmatised) conditions also, but this needs confirmation. The scale allows collection of participation data and impact assessment of interventions to improve social participation. Such data may be compared between clients, interventions and programmes. The scale is suitable for use in institutions, but also at the peripheral level.

Risk factors for participation restriction in leprosy and development of a screening tool to identify individuals at risk.

The World Health Organisation International Classification of Functioning, Disability and Health defines participation as involvement in a life situation. Participation restrictions are problems experienced in any life situation, for example, in relationships or in employment. Our research explored risk factors for participation restrictions experienced by people affected by leprosy. Our objective was to develop a screening tool to identify individuals at risk. An initial round of qualitative fieldwork in eight centres in Nepal, India and Brazil identified 35 potential risk factors for participation restriction. These were then further assessed through quantitative fieldwork in six centres in India and Brazil. In all, 264 individuals receiving leprosy treatment or rehabilitation services made a retrospective assessment of their status at time of diagnosis. Their level of participation restriction was assessed using the Participation Scale. Regression analysis identified risk factors for participation restriction including fear of abandonment by family members (odds ratio 2.63, 95% CI 1.35-5.13) and hospitalization at diagnosis (3.98, 1.0-7.32). We recommend four consolidated items as the basis for a simple screening tool to identify individuals at risk. These are the physical impact of leprosy, an emotional response to the diagnosis, female gender and having little or no education. Such a tool may form the basis for a screening and referral procedure to identify newly diagnosed individuals at risk of participation restrictions and in need of actions that may prevent such restrictions.