The Dimensions of Tokenism in Patient and Family Engagement: A Concept Analysis of the Literature.

Abstract

Patient engagement (PE) has become embedded in discussions about health service planning and quality improvement, and the goal has been to find ways to observe the potential beneficial outcomes associated with PE. Patients and health care professionals use various terms to depict PE, for example, partnership and collaboration. Similarly, tokenism is consistently used to describe PE that has gone wrong. There is a lack of clarity, however, on the meanings and implications of tokenism on PE activities. The objective of this concept analysis was to examine the peer-reviewed and gray literature that has discussed tokenism to identify how we currently understand and use the concept. This review discusses 4 dimensions of tokenism: unequal power, limited impact, ulterior motives, and opposite of meaningful PE. These dimensions explicate the different components, meanings, and implications of tokenism in PE practice. The findings of this review emphasize how tokenism is primarily perceived as negative by supporters of PE, but this attribution depends on patients’ preferences for engagement. In addition, this review compares the dimensions of tokenism with the levels of engagement in the International Association of the Public Participation spectrum. This review suggests that there are 2 gradations of tokenism; while tokenism represents unequal power relationships in favor of health care professionals, this may lead to either limited or no meaningful change or change that is primarily aligned with the personal and professional goals of clinicians, managers, and decision-makers.