'When the psychiatrist gives you medication; you must take them’: Lived experience of long-term users of benzodiazepine receptor agonists regarding their treatment

Benzodiazepine receptor agonists (BZRA) are prescribed for hypnotic and antiepileptic effects. However, longterm use (≥ 6 months) can lead to dependence, cognitive impairment, and increased injury risks. Reducing poses challenges, often causing withdrawal symptoms such as anxiety and insomnia resurgence. Guidelines
recommend cautious use, suggesting treatment durations between 1 to 4 weeks. However, prescriptions frequently extend beyond this, deviating from these recommendations. Patients' lived experiences are crucial for comprehending the nuances and complexities of withdrawal. Considering the unique challenges associated
with withdrawing from BZRAs, gaining a more profound insight into the experiences of patients could prove advantageous for both healthcare professionals and individuals undergoing withdrawal. In this study we explore the experiences regarding their treatment goals of long-term BZRA users who have subsequently either
stabilized, reduced, or discontinued their usage.

A purposive sample of long-term BZRA users was recruited, emphasizing diversity in experiences and geographic locations. Interviews, conducted in person or via videoconference, explored participants' journeys, by using a modified life history calendar. The life history calendar prompts individuals to provide detailed information about various life events and their associated contexts along a timeline. This methodology proves reliable for collecting retrospective data, offering a valuable tool to study the timing and sequencing of events while enhancing participants' recall and reporting accuracy. The topic guide was structured into several sections focusing on the
management of patients from their initial prescription, their trajectory, the moment they decided to stop, reduce, or stabilize their dose, triggering factors for starting deprescription, and their recovery. Nineteen interviews, conducted in French (PVN) and Dutch (MC), were analyzed using Interpretative Phenomenological Analysis (IPA). This approach requires an in-depth exploration of participants' lived experiences, aiming to
uncover the ways in which they make sense of their experience.
Two superordinate themes surfaced during the data analysis: (1) ‘I haven't discussed anything with anyone’ and (2) ‘I wasn't ready [for the withdrawal]’. Within the first superordinate theme, the findings indicate that patients expressed a desire to take charge of their own decisions independently regarding withdrawal, without healthcare professional involvement. Some of them started to stop BZRA use on their own and informed their GP afterwards. Within the second overarching theme, some patients explained that they felt a strong sense of obligation to adhere strictly to the treatment and prescribing guidelines set out by their healthcare providers.
Other participants revealed dissatisfaction due to perceived inadequate education on withdrawal symptoms. Some participants expressed a lack of comprehension regarding the prescriber's therapeutic decisions and highlighted challenges in BZRA withdrawal, underscoring the necessity for personalized reassessment. They emphasize that tapering off requires prior patient’s preparation.
Understanding the lived experiences of long-term BZRA users highlights the importance of a patient-centered and goal-oriented care approach, emphasizing patient preferences and needs during their treatment. Strengthening the patient-physician relationship are key elements for addressing dissatisfaction and improving personalized reassessment in BZRA withdrawal process. Ongoing evaluation and adaptation are essential to achieve lasting improvements in support for long-term withdrawal. Focusing on the patients' priorities and needs will not necessarily lead to withdrawal, which may be reevaluated along the way depending on the evolution of the patient's situation. Support is broader and can include withdrawal, and withdrawal is not necessarily included in the support. Recognizing patients' unique perspectives and needs is essential for fostering inclusive healthcare practices, taking into account the impact of diverse social identities.