Patients’ narratives of their participation in the myocardial infarction pathway

Aim To explore how patients in areas without local percutaneous coronary intervention (PCI) facilities experience patient participation in different phases of the myocardial infarction pathway. Background Acute treatment of myocardial infarction often involves PCI. In Norway, this treatment is centralized at certain hospitals; thus, patients often require long‐distance transportation and experience frequent hospital transfers. Short hospital stays, transfers between hospitals and the patient's emotional state pose challenges to promoting patient participation. Design A qualitative design with a narrative approach. Methods Participants were recruited through purposive sampling. Eight men and two women were interviewed in 2016. Findings Four themes related to the patients' experiences at the beginning, middle and end of the pathway were identified: (a) Lack of verbal communication in the acute phase; (b) trust in healthcare professionals and treatment; (c) lack of participation and coordination at discharge; and (d) shared decision‐making in rehabilitation. The findings showed how the patients moved from a low level of patient participation in the acute phase to a high level of patient participation in the rehabilitation phase. Conclusion This is the first study to explore patient participation in different phases of the myocardial infarction pathway. We argue that individual plans for information and patient participation are important to improve patient involvement in an earlier stage of the pathway. Further research from a healthcare professional perspective can be valuable to understand this topic. Impact This study gives new insight that can be valuable for healthcare professionals in implementing patient participation throughout the pathway