NEGOTIATING HEALTH: patients’ and guardians’ perspective on “failed” patient-professional interactions in the context of the Swedish health care system

BACKGROUND: Sweden has a largely tax-funded health care system that aims at providing equal access for everyone. However, the individual’s perception and experience of the health care system remains a relevant topic for researchers. The aim of this study is to learn the patient’s perspective on how patients and professionals negotiate in the social context of the Swedish health care system. METHODS: Eight essays that had spontaneously been contributed to a medical writing contest were analyzed using narrative methods. Narratives were defined as a sequence of clauses that correspond to an order of events in the narrator’s biography. The analysis comprised a three-step process. First, the essays were read and narratives were extracted. Second, an agency analysis was performed. Third, an analysis of social positioning was employed. RESULTS: The Swedish health care system provides the social context and background for negotiations between patients and professionals. The narrators position the protagonists of the illness narratives as either patients or guardians of underage patients. The protagonists meet health care representatives in negotiation situations. Due to the lack of emotional connection between the negotiating parties, impossible situations arise. False promises are made which ultimately result in the patients’ suffering. Thus, all negotiations failed from the narrators’ perspective. CONCLUSION: The narrators invited their audience to solve negotiation situations differently. This study discusses some actions that may help navigate negotiation situations: Health care providers should acknowledge the patient’s or guardian’s social position and dilemma, allow emotions, involve all parties in the decision-making process and manage expectations. Writing competitions may provide a tool for experience-based assessment of health care systems.