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Measuring social participation restrictions of persons affected by leprosy in Central Java through validating the Participation Scale Short Simplified (PSSS)

Abstract
Introduction: Persons affected by leprosy are still likely to experience social stigma and participation restrictions. Measuring the level of participation is essential for the development, implementation and evaluation of appropriate stigma reduction, rehabilitation and other services and so diminish leprosy related stigma in Indonesia. The Participation Scale is an 18-item questionnaire that is internationally used to measure the severity of restrictions experienced by persons with disabilities and others with conditions that are stigmatised or that may limit their social participation. However, some problems were reported with conducting the P-Scale, especially when used with low-literate respondents. An earlier attempt to simplify the P-Scale was not entirely satisfactory and thus there still was a need to further develop an improved shortened and simplified version of the P-scale to enable a quick participation assessment.

Objective: The purpose of this study was (A) to develop a simplified and shortened version of the Pscale that can be used to assess participation restrictions in Indonesia and (B) to measure the level of participation restrictions experienced by persons affected by leprosy in Central Java, Indonesia.

Methods: This study took place in Central Java, Indonesia. After developing the Participation Scale Short Simplified (PSSS), a focus group discussion and fifteen semi-structured interviews were conducted to assess the operational, item and semantic validity. The PSSS was refined after analysing the qualitative results. In the quantitative phase, interviews took place using both the PSSS and PScale in random order. The sample consisted of 112 persons affected by leprosy and 54 control persons. After six to nine days, 47 interviews with persons affected by leprosy were repeated. To assess to measurement validity, the following psychometric properties were calculated: criterion validity, internal consistency, reproducibility, floor and ceiling effects ad interpretability.

Results: After a few adjustments, the questionnaire was understood sufficiently well and was considered relevant and acceptable by the vast majority of respondents. The criterion validity was assessed with Spearman correlation, showing a positive correlation between the PSSS and full Participation Scale (r=0.688). The cut-off to obtain an optimal combination of sensitivity and specificity (respectively 0.82 and 0.75) was nine. A Cronbach’s alpha of 0.84 showed a good internal consistency. An Intra Class Correlation coefficient of 0.74 indicated good reproducibility. No floor and ceiling effects were present. Within our study sample, 38.5% of the persons affected by leprosy experienced participations restrictions, compared to 9.3% of the control group.

Conclusion: The PSSS shows good qualitative and psychometric properties, just as the full Participation Scale and enables a rapid assessment which reduces the burden of patients. It is a suitable tool for assessment of the severity of participation restrictions among persons affected by leprosy, and for evaluation and comparison of participation restrictions between groups and programmes in Central Java, Indonesia. We recommend the use of the PSSS, instead of the full version, especially in a target group with a low education level and when a rapid assessment is needed.

More information

Type
Thesis
Author
Coltof T
Year of Publication
2019
Degree
Master of Medicine
Language
eng
University
VU University Amsterdam
City
Amsterdam
Publication Language
eng