Measuring participation for persons with mental illness: A systematic review assessing relevance of existing scales for low and middle income countries

BACKGROUND Participation is increasingly becoming an important outcome for assessment in many fields, including development, disability and policy implementation. However, selecting specific instruments to measure participation has been a significant problem due to overlapping conceptual definitions and use of different theories. The objective of this paper is to identify participation instruments, examine theories/definition supporting their use and highlight scales for use in low and middle-income countries for persons with mental illness. METHODS A systematic literature review was conducted to identify instruments intended to measure participation for individuals with severe mental illness. The search was limited to peer-reviewed articles published in English between 2003 and 2014. Instruments that measured related concepts of well-being, quality of life and social functioning were also identified and screened for items that pertained to participation, defined as empowerment and collective capabilities. RESULTS Five scales met established criteria for assessing participation and were determined to contain questions measuring empowerment and/or collective capabilities. However, each scale largely assessed individual functioning and capacity, while neglecting collective aspects of the community. All scales were developed in high-income countries and none were used in low and middle-income countries. CONCLUSIONS There is an urgent need for participation scales to focus on empowerment as well as collective capabilities. Further, development of participation scales should clearly delineate theoretical foundations and concepts used. Finally, participation scales used in low and middle income countries should consider how contextual factors like medicine, poverty and disability, particularly with regards to mental illness, impact content of the scale.