Testing and validating a simplified scale to measure social participation of people with disabilities in Indonesia.

PURPOSE: The Participation Scale is an 18-item interview-based scale that measures social participation. In Indonesia, problems were reported with conducting the Participation Scale interview. To address these, a simplified version of the Participation Scale was developed and tested in Jakarta and Makassar, Indonesia. METHODS: People with different kinds of disability were interviewed with the original Participation Scale and the simplified version and we also asked their opinion about the scale. Fifty people without disabilities were included to establish the "normal" score for social participation. The following psychometric properties were calculated: internal consistency, criterion validity, floor and ceiling effects and interpretability. Internal consistency was calculated using Cronbach's alpha (>0.70). Criterion validity was calculated for the continuous participation scores using Spearman's rank correlation (0.77 [p < 0.0001]). RESULTS: Floor and ceiling effects were not present. The control group was used to interpret the quantitative scores. Sensitivity and specificity were 0.88 and 0.80, respectively. The observations and feedback during interviews showed that there were still difficulties when using the simplified version. CONCLUSION: The psychometric properties of the simplified instrument are good, but our findings showed that even the simplified version of the Participation Scale still remains difficult to understand for people with a low education level. Further work on the simplification of this instrument is necessary.

Disability in people affected by leprosy: the role of impairment, activity, social participation, stigma and discrimination.

BACKGROUND: Leprosy-related disability is a challenge to public health, and social and rehabilitation services in endemic countries. Disability is more than a mere physical dysfunction, and includes activity limitations, stigma, discrimination, and social participation restrictions. We assessed the extent of disability and its determinants among persons with leprosy-related disabilities after release from multi drug treatment. METHODS: We conducted a survey on disability among persons affected by leprosy in Indonesia, using a Rapid Disability Appraisal toolkit based on the International Classification of Functioning, Disability and Health. The toolkit included the Screening of Activity Limitation and Safety Awareness (SALSA) scale, Participation Scale, Jacoby Stigma Scale (anticipated stigma), Explanatory Model Interview Catalogue (EMIC) stigma scale and Discrimination assessment. Community members were interviewed using a community version of the stigma scale. Multivariate linear regression was done to identify factors associated with social participation. RESULTS: Overall 1,358 persons with leprosy-related disability (PLD) and 931 community members were included. Seventy-seven percent of PLD had physical impairments. Impairment status deteriorated significantly after release from treatment (from 59% to 77%). Around 60% of people reported activity limitations and participation restrictions and 36% anticipated stigma. As for participation restrictions and stigma, shame, problems related to marriage and difficulties in employment were the most frequently reported problems. Major determinants of participation were severity of impairment and level of education, activity and stigma. Reported severity of community stigma correlated with severity of participation restrictions in the same districts. DISCUSSION: The majority of respondents reported problems in all components of disability. The reported physical impairment after release from treatment justifies ongoing monitoring to facilitate early prevention. Stigma was a major determinant of social participation, and therefore disability. Stigma reduction activities and socio-economic rehabilitation are urgently needed in addition to strategies to reduce the development of further physical impairment after release from treatment.