A New Instrument to Measure Leprosy Internalised Stigma: the Leprosy Internalised Stigma Scale (LISS)

Purpose: Leprosy is a stigmatised disease and the assessment of stigma is particularly important. There is a need for comprehensive, valid and reliable instrument to assess internalised stigma. Objective: To develop a scale to measure internalised stigma for people affected by leprosy. Methods: A cross sectional scale development study was carried out in a tertiary leprosy referral centre, Purulia, West Bengal, India using standard methods. A 27 item scale was developed to measure the internalised stigma. The scale was administered with a consecutive sample of 416 people affected by leprosy aged above 18 years and 54 completed the scale twice within an interval of 3–4 weeks. Developing the scales involved face and content validity, internal consistency, factor analyses, construct validity and test–retest reliability. Construct validity of the scale was determined by using Participation Scale and World Health Organization Quality Of Life (WHOQOL-Bref) scale. Results: Exploratory factor analysis revealed a four-factor solution accounting for 81% of the total variance. The four underlying sub-scale dimensions were self acceptance, self isolation, social withdrawal and disclosure. Cronbach’s alpha was 0·96, and test intra-class correlation coefficient was 0·77. The total score of the LISS scale had a significant moderate positive correlation with the P Scale (r¼0·51, p¼0·00) and a weak negative correlation with WHOQOL total score (r¼20·36, p¼0·00). Conclusion: The LISS scale is acceptable, valid and reliable for measuring the Internalised stigma of the persons affected by leprosy. It is a promising tool which can be easily incorporated into leprosy programmes.