Re-negotiating agency – patients using comics to reflect upon acting in situations of abuse in health care

BACKGROUND: There is a growing body of international research that displays the prevalence and character of abuse in health care. Even though most of these studies are conducted from a patient perspective little is known about how patients conceptualize their agency in relation to such situations. This study aimed to explore how patients reason about their potential to act in abusive situations. METHODS: Qualitative interviews were conducted with thirteen patients in Sweden. Central in the interviews were three comics, inspired by Boal’s Forum Theatre and part of an earlier online intervention study in which the informants had participated. Each comic showed a situation in which a patient feels abused, and on the opposite side were suggestions for how the patient could act in response. Informants were asked to reflect about situations of abuse and in specific upon the comics. We used the methodology of constructivist grounded theory throughout the study, including the analysis. RESULTS: It appeared that the informants constantly re-negotiated their and other patients’ agency in relation to the specifics of the event, patients’ and staff’s responsibilities, and the patients’ needs and values. This process questions views of agency as fixed and self-evident, and can be understood as part of changing discourses about patients’ social role and possibilities to organize their care. Using a feminist theory of power we expected the informants to elicit instances of resistance to domination, which is central to the comics. While doing that, the informants also hinted at parallel stories of empowerment and less visible forms of agency in spite of domination. CONCLUSION: The current analysis showed different ways in which the informants constantly re-negotiated their agency in potentially abusive situations. Not only did the informants engage in reflections about immediate responses to these untoward situations, they also engaged in thoughts about strategies that could protect them and counteract abuse in health care over the long-term. This opens up for future research into ways patients organize their care and identify threats and barriers to the care they need, which could be valuable knowledge for care quality improvement.