Measuring health-related stigma: Exploring challenges and research priorities to improve assessment.

Despite the advances in stigma research, measuring health-related stigma continues to be challenging and knowledge gaps remain. This study gained insight into challenges and research priorities related to the assessment of health-related stigma. Interviews were conducted with 14 stigma researchers, followed by a survey that was completed by 36 respondents. The findings showed a diverse range of research priorities. Among the top ranked priorities were the need for robust measurement properties of existing scales (content validity, responsiveness, validation across settings), exploration and assessment of subtle changes in stigma, and investigation on ways to assess actual behaviour and discrimination. Various challenges with the cross-cultural use of measures were identified, along with a research opportunity to shorten the cross-cultural validation process. Other identified research priorities related to: studying multi-level intersectional stigma; focusing on positive features that counter stigma; rephrasing negative and offending scale items; developing generic measures; and, the further development of practical tools to support researchers with scale implementation. The defined research priorities can guide future studies to advance stigma measurements and, as our ability to measure is critical for our understanding, enhance our knowledge about the complex stigma processes.

Validation of a cross-NTD toolkit for assessment of NTD-related morbidity and disability. A cross-cultural qualitative validation of study instruments in Colombia.

BACKGROUND: Many neglected tropical diseases (NTDs) are not fatal, but they are disabling, disfiguring and stigmatizing. More accurate data on these aspects would benefit planning, monitoring and evaluation of interventions, as well as provision of appropriate services for the often life-long consequences. In 2015, a cross-NTD toolkit was developed, consisting of a variety of existing questionnaires to measure morbidity, disability and health-related quality of life. The toolkit covers the domains of the International Classification of Functioning, Disability and Health (ICF) framework. These tools have been developed in a source country, however, it was intended for the cross-NTD toolkit to be applicable across NTDs in many countries with different cultures and languages in order to generate universally comparative data. Therefore; the present study aimed to validate several tools of the toolkit among people affected by leprosy or leishmaniasis in the cultural settings of Cartagena and Cúcuta, Colombia. METHODOLOGY: This study aimed to validate the following tools among 55 participants between 18-85 years old, affected by leprosy and leishmaniasis: (I) Clinical Profile, (II) Self-Reporting Questionnaire (SRQ), (III) WHO Quality of Life assessment-abbreviated version (WHOQOL-BREF), and (IV) WHO Quality of Life assessment-Disability (WHOQOL-DIS). The tools were administered during face-to-face interviews and were followed by open questions about the respondents' thoughts on format of the tool and the understanding, relevance and acceptability of the items. The tools were validated using a qualitative method approach based on the framework for cultural equivalence, measured by the cultural, item, semantic and operational equivalences. RESULTS: The Clinical Profile was seen as acceptable and relevant, only the semantic equivalence was not as satisfying and needs a few adaptations. The SRQ was very well understood and shows to reach the equivalences for the population of Colombia without any additional changes. Several items of the WHOQOL-BREF and the WHOQOL-DIS were not well understood and changes are recommended due to semantic difficulties. Operational equivalence of both questionnaires was not as desired in relation to the used response scales. The participants shared that the tools are relevant and important for their particular situation. CONCLUSIONS/SIGNIFICANCE: The SRQ is found to be a valid tool for Colombia and can be included in the cross-NTD toolkit. The Clinical Profile, WHOQOL-BREF & WHOQOL-DIS need changes and retesting among Colombian people affected by an NTD. The toolkit as a whole is seen as useful to show the effects leprosy and leishmaniasis have on the participants. This cultural validation will contribute to a universally applicable cross-NTD toolkit.

Assessing the Impact of the Twin Track Socio-Economic Intervention on Reducing Leprosy-Related Stigma in Cirebon District, Indonesia.

The consequences of leprosy go beyond the physical, social and psychological, as leprosy can drive persons affected and their families into poverty, stigmatization and disability. This paper describes the impact of a socio-economic development (SED) intervention that uses a twin-track approach (two micro-credit models) to reduce leprosy-related stigma in Cirebon District, Indonesia. A randomized-controlled mixed-methods study design was used to test the effectiveness of the SED intervention. Three scales were used to measure stigma and participation restrictions among 30 SED clients and 57 controls, 20 in-depth interviews with SED clients and seven Focus Group Discussions (FGDs) with key persons were held and 65 profiles of the clients were written up and analysed. The qualitative data shows the socio-economic status of 44 out of 65 SED clients (67%) improved. The median family income increased by 25%, more clients reported higher self-esteem, better interaction with neighbours and less stigma than before, although disclosure concerns remained an issue. The scales indicate a positive effect of the intervention on reducing stigma (e.g., Stigma Assessment and Reduction of Impact (SARI) stigma scale mean difference total score of pre and post assessment for SED clients versus the control group was 8.5 versus 5.6). A twin track socio-economic intervention, if embedded and integrated, can increase participation, and be constructive in reducing leprosy-related stigma.

Impact of socio-economic development, contact and peer counselling on stigma against persons affected by leprosy in Cirebon, Indonesia ­a randomised controlled trial.

Objectives: People affected by leprosy are often stigmatised, but stigma is rarely quantified and the effectiveness of interventions is often not evaluated. The SARI Project aimed to test and evaluate three interventions: counselling (involving peer counsellors), socio-economic development (SED) and contact between community members and affected people. Results: This study used a controlled trial design in which pairs of the stigma-reduction interventions were randomly allocated to sub-districts in Cirebon District,Indonesia. The study sample consisted of one cohort of people affected by leprosy (on treatment or treated) and two independent samples of community members. The latter were selected through purposive sampling. Three scales (e.g. SARI Stigma Scale, Participation scale) were applied among leprosy-affected people and two scales (e.g. Social Distance Scale) were used among community members pre- and post-intervention. Among affected people (n=237), significant differences in reduction of stigma and participation restrictions were found in all intervention areas and an improvement in quality of life in some intervention areas. Social distance and social stigma significantly reduced among community members (n=213 and 375) in the two intervention areas where the contact intervention was implemented. Two of the five instruments indicated changes in the control area, but the changes in the intervention areas were much larger. Conclusion: The SARI Project has demonstrated that a measurable reduction in leprosy-related stigma can be achieved, both at community level and among people affected by leprosy, using reproducible interventions that can be adapted to different settings and target groups.

Lay and peer counsellors to reduce leprosy-related stigma--lessons learnt in Cirebon, Indonesia.

OBJECTIVE: Counselling has been identified as a promising strategy to reduce stigma. Lay and peer counsellors have provided counselling in various fields, but this has not yet been studied in the field of leprosy. The Stigma Assessment and Reduction of Impact (SARI) project in Cirebon District, Indonesia took up this endeavour. This paper describes the initial experiences based on the perspectives of the lay and peer counsellors and aims to provide lessons learnt for future initiatives. METHODS: 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. RESULTS: 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. CONCLUSION: 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.