A negative perception of leprosy and other neglected tropical diseases (NTDs) is a problem that is seen globally. It results in discrimination, social exclusion and widespread mental health problems. We developed the Perception Study Toolkit (PST) to investigate the perception (knowledge, attitudes, beliefs and emotions) of leprosy.
The PST can help identify specific beliefs, knowledge gaps, misconceptions and fears to inform community education and behaviour change interventions and can be used to monitor and evaluate such interventions. Using a standard toolkit like the PST would enable assessment of the perception of leprosy or other NTDs that would allow comparison across projects and countries including monitoring of changes over time.
The toolkit consists of four measures, a Communication Needs Assessment questionnaire, Knowledge Attitudes and Practices questionnaire, the EMIC community stigma scale and the Social Distance Scale. It also comprises qualitative methods to investigate perception: the way people see leprosy, what they know about leprosy and their attitudes, beliefs and reported behaviour towards persons affected by leprosy. The PST is a toolkit and comprises separate instruments that assess different aspects of perception, it is also possible to use only one or a few of the instruments of the PST. An implementation protocol of the toolkit can be found on page 15-17 of this document.
With minor adaptations, the PST can also be used for other NTDs. We are currently conducting a Delphi study to build consensus on which instruments to include in a cross-NTD PST (results are expected in February/March 2022).
Please contact Dr Wim van Brakel for further information.
|Demographic information form
|To collect basic participant information such as name, age, gender, address, occupation and education
|To assesses knowledge, attitudes and beliefs of individuals regarding leprosy
|Explanatory Model Interview Catalogue Community Stigma Scale (EMIC-CSS)*
|To assess perceived attitudes and behaviour towards affected persons of community members in general
|Social Distance Scale (SDS)*
|To assess how close a contact or relationship a respondent is willing to have to a person affected by leprosy as a proxy for their attitudes
|Communication Needs Assessment (CNA) questionnaire
|To assess what means of communication people are using, what means they are familiar with and what means they find most acceptable
|To establish an in-depth conversation and understanding regarding perceptions towards leprosy
|Focus group discussions (FGDs)
|Focus group discussion
|To provide a broad and diverse spectrum of opinions and ideas on knowledge and perceptions towards leprosy.
*These instruments are also included in the NTD Morbidity and Disability (NMD) Toolkit