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.

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.

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.

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.

A self-constructed questionnaire delivered to 116 participants, at three leprosy health centres, across three states in Brazil.

Most participants felt under-informed during diagnosis; 68.1% wanted more information about leprosy. Nearly one-quarter of patients reported feeling unable to ask questions at diagnosis. Almost half of patients reported being worried about treatment, yet 43.3% reported not having the chance to talk about their concerns. Younger participants were significantly more likely to report feeling unable to ask questions and talk about their worries. The majority of participants (59.5%) reported not being given any written information to take away with them. 36.5% reported not being given advice about how to reduce the chance of other family members becoming ill with leprosy. Older males were most likely to be given this advice despite females being in most contact with family members in most cultures.

It is recommended that patients are encouraged to ask questions and invited to talk about their concerns, particularly younger patients. It is recommended that a simple information leaflet be provided to all patients. These suggestions may require some financial input, more staff and longer consultations but should significantly improve the diagnostic process.

The selection of lay and peer counsellors was based upon pre-defined criteria such as completed junior high school and level of confidence. This study draws on the notes of seven monitoring and evaluation meetings and 21 group discussions the main researcher facilitated with the lay and peer counsellors and the notes written by the lay and peer counsellors on the sessions with their clients.

In total, 198 people affected by leprosy were offered counselling by the 11 lay and 12 peer counsellors; 145 accepted this offer. The other 53 either did not need counselling or did not want to participate for example due to worries about disclosure. Effective communication skills such as listening and asking effective questions were important, but also difficult to acquire for the lay and peer counsellors. Sharing personal experiences was highly appreciated by clients and stimulated a deepened reflection.

Challenges related to concealment and effective skills exist, but some people affected by leprosy and others can become effective counsellors making it at the outset a challenging but nevertheless promising intervention.

To assess the perception of community members towards stigma related to leprosy and tuberculosis, in order to verify and compare the existence of stigma towards these two diseases in the community, and to provide baseline data for the evaluation of future de-stigmatising interventions.

This study was done in four sub-districts of Chaiyaphum province. Community members were interviewed using the EMIC stigma scale. Frequency was used to identify the percentage of community members who perceived stigma. A T-test was applied to compare the mean EMIC scores of community members between leprosy and tuberculosis. A P-value of <0.05 was considered indicative of a statistically significant difference or association.

It was found that community members perceived that people affected by leprosy or tuberculosis were stigmatised by the community. However, community members perceived more stigma towards leprosy than towards tuberculosis, particularly in terms of shame, embarrassment, and problems in getting married. The difference was highly significant (P = 0.001, paired t-test).

The communitys perceived stigma against people affected by either leprosy or tuberculosis may affect many aspects of their lives. The authors recommend use of strategically targeted de-stigmatising interventions that take local attitudes and perceptions into consideration.