Paper short abstract:

We try to document how VTE patients and their families make sense of ‘being still at risk’, i.e. non-recovery, despite the absence of symptoms, and how and to what extent families and/or caregivers actors' interactions can influence patient’s awareness for the risk of recurrence of a VTE event.

Paper long abstract:

How does the public understand being still at risk for VTE according to the medical team, when they know that sometimes one could recover from provoked VTE episode? Moreover, how to make sense of 'being at risk' because of being a first-degree relative of someone who has had either an idiopathic embolism or a phlebitis? How to make sense of 'being still at risk', i.e. non-recovery, despite the absence of symptoms?

Given the efficient and available emergency medical care, an idiopathic VTE recovered patient may not realise that recurrence of an idiopathic VTE episode is not only possible but also lethal. How should the medical team go by explaining the risk of recurrence and the preventive measure to the patient, and patient's parent, or siblings in days following a first idiopathic episode? The most important measure is informing the primary care physician in case of doubt and anxiety, this requires patient's active collaboration to transfer patient's clinical status.

From their part, the patient's family members needs to determine the cause of the idiopathic first event. This goes by determining and understanding of the circumstances in which the event has occurred. Their own appropriate preventive measures can be implemented according to their knowledge of circumstances. In this manner, a narrative history of VTE and its preventive measures will be passed on within the family tree.

How and in what extent those actor's interactions can influence patient's awareness, before, during and after patient care onset for an VTE event?