The Participation Scale: Measuring a key concept in public health

Purpose. To develop a scale to measure (social) participation for use in rehabilitation, stigma reduction and social integration programmes. Method. A scale development study was carried out in Nepal, India and Brazil using standard methods. The instrument was to be based on the Participation domains of the International Classification of Functioning, Disability and Health (ICF), be cross-cultural in nature and assess client-perceived participation. Respondents rated their participation in comparison with a 'peer', defined as 'someone similar to the respondent in all respects except for the disease or disability'. Results. An 18-item instrument was developed in seven languages. Crohnbach's α was 0.92, intra-tester stability 0.83 and inter-tester reliability 0.80. Discrimination between controls and clients was good at a Participation Score threshold of 12. Responsiveness after a 'life change' was according to expectation. Conclusions. The Participation Scale is reliable and valid to measure client-perceived participation in people affected by leprosy or disability. It is expected to be valid in other (stigmatised) conditions also, but this needs confirmation. The scale allows collection of participation data and impact assessment of interventions to improve social participation. Such data may be compared between clients, interventions and programmes. The scale is suitable for use in institutions, but also at the peripheral level.