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Cross-Cultural validation of two scales to assess stigma and social participation in leprosy-affected persons in Kathmandu Valley, Nepal

Leprosy is one of the oldest diseases known to humankind and causes severe disabilities and disfigurements in many countries worldwide. It is connected to many social problems, such as stigma and restrictions in social participation. Many factors drive leprosy-related stigma, and its impact can include social, psychological, health and economic consequences, which decreases the quality of life of leprosy-affected people.

Measuring stigma and the level of restriction in social participation is crucial for the development,implementation and evaluation of stigma reduction, rehabilitation and other interventions for persons affected by leprosy in Nepal. Two instruments that aim to measure these concepts have been recently developed in the English language. The 5-Question Stigma Indicator-Affected People (5-QSI-AP) is a five-item tool aimed to measure experienced stigma. The participation Scale Short Simplified (PSSS), is a 13-item tool based on the commonly endorsed Participation Scale. The conceptualization of stigma and social participation differs across culture, making it challenging to generalize tools from one country to another. In order to validate these tools for use in Nepal and potential inclusion in the, by van ‘t Noordende et al. developed, neglected tropical disease (NTD) morbidity and disability toolkit (NMD – toolkit), this study aimed to perform a cross-cultural validation using the “cultural equivalence” framework to answer the following research question: “How valid are the 5-QSI-AP and PSSS among people affected by leprosy in Nepal?”.

This study took place at several places in the Kathmandu Valley, Nepal. The 5-QSI-AP and PSSS were translated following WHO guidelines. Next, cultural validity was examined by assessing the conceptual, semantic, item, operational (qualitative) and measurement validity (quantitative). A qualitative pilot study with eight semi-structured interviews was performed to 1) increase our understanding of the concept of stigma and 2) ensure that people in Nepal understand the meaning of the items on the questionnaires (semantic), that they consider them as relevant and appropriate (item), and that they know how to use it (operational). This was an iterative process of translation, discussions with experts and adaptions, which resulted in final versions of both instruments. Finally, a total of 110 people affected by leprosy were selected through convenience sampling, followed by purposive sampling, and 50 repeated measures were obtained. In addition, parallel measures with the Participation Scale Short were performed, and a normative sample of 50 people without any disability was included. Measurement validity was assessed by testing the following psychometric properties: Criterion validity, construct validity, internal consistency, floor and ceiling effects, reproducibility and interpretability.

Results and discussion:
For the 5-QSI-AP, conceptual exploration of stigma led to the identification of the three themes - social exclusion, avoidance and concealment - that are covered by the items of the questionnaire. The true meaning and words of all five items of the 5-QSI-AP and 13 items of the PSSS were clearly understood, confirming semantic validity. None of the questions caused any discomfort among the respondents, and the importance of the items of the 5-QSI-AP and PSSS was confirmed during the pilot study. However, item non-validity, in the form of irrelevance, was present in one question of the PSSS, which was then adapted to better represent the female population.
Neither the interviewer nor the respondents reported any difficulties in the administration format of the 5-QSI-AP and PSSS.
Regarding measurement validity, using a ROC-curve, the normal cut-of value of the PSSS was defined at 12. The sensitivity and specificity of the PSSS versus the P-Scale Short are 0.86 and 0.92, respectively. For assessment of construct validity, three of the four a priori hypotheses for the PSSS and two of the three hypotheses for the 5-QSI-AP were confirmed. Internal consistency was tested using Cronbach’s alpha. A score of 0.87 for the PSSS is considered optimal, and indicates that items measure the same underlying construct. For the 5-QSI-AP, removal of Q4, which concerns “difficulties in marriage/in getting married,” would increase the Cronbach’s alpha from 0.66 to 0.71. This is consistent with another study that used the 5-QSI community version and reported a higher alpha when deleting Q4. The test-retest reliability was measured using the Intraclass Correlation and was 0.79 for the PSSS and 0.72 for the 5-QSI-AP. The results show that both the 5-QSI-AP and PSSS are capable of effectively discriminating between groups, for example in age, gender, and disability status, supporting their reliability. These findings support the notion that gender, and visible signs of leprosy are factors closely related with stigma and, consequently, restrictions in social participation. Finally, floor and ceiling effects were not present for either scale.

For the PSSS, we can conclude that it has acceptable cultural validity in the Nepali culture and that it can be included in the NTD morbidity and disability toolkit. However, for the 5-QSI-AP we recommend identifying alternative constructs that better reflect stigma in people affected by leprosy. The performance of an alternative item should be examined in the target population to determine whether it can replace the current item 4.

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