Patients prescribed antipsychotics feel unheard: A call for shared decision-making

A recent study highlights a critical issue in modern psychiatric care: individuals prescribed antipsychotic medications often report that their concerns regarding adverse effects are not adequately addressed by healthcare professionals. This finding points to a broader systemic failure in implementing person-centered care models, particularly the principle of shared decision-making, which is widely recognized as essential for effective patient engagement and positive treatment outcomes. Despite an overarching move towards patient autonomy in Western medicine, psychiatry appears to lag in fully embracing these collaborative approaches.

The study, conducted by researchers Holly Grey and Laura Lindsey from Newcastle University, and published in the International Journal of Clinical Pharmacy, examined the lived experiences of young adults on antipsychotics. It found a recurring pattern where patients’ anxieties about medication side effects were frequently downplayed or dismissed. Many participants reported a lack of comprehensive information about potential negative effects and felt excluded from pivotal discussions about their treatment plans. This approach contrasts sharply with the aspirational goal of shared decision-making, where patients are empowered to make informed choices in partnership with their clinicians.

Shared decision-making offers substantial benefits, including enhanced patient involvement, improved adherence to treatment, greater satisfaction, and a reduction in coercive practices. Research, including a 2026 review, consistently shows that when patients are actively engaged in their treatment decisions, they experience better quality of life, increased self-esteem, and a stronger sense of empowerment. However, the implementation of this model in psychiatry faces numerous hurdles. These include clinicians' negative perceptions of patients' capacity to understand their conditions, systemic resource limitations, organizational inertia, and a prevailing emphasis on risk management that often sidelines patient preferences.

The study specifically delved into how healthcare professionals involve patients in antipsychotic treatment decisions. Through semi-structured interviews with 14 participants, mostly from the UK, researchers identified four key themes: living with antipsychotics, the influence of family and friends, the journey toward autonomy, and the implications of young adulthood. A significant number of participants reported experiencing distressing side effects such as fatigue, dizziness, and weight gain, with some even noting an exacerbation of psychosis or new cardiac issues. These concerns were often met with skepticism or inadequate responses from healthcare providers, leading to feelings of disempowerment. One participant vividly recalled, "It's devastated me that I'm not being listened to."

Furthermore, the research illuminated how family and friends, while often well-intentioned, could inadvertently become barriers to patient autonomy. Many participants recounted instances where their support systems made decisions on their behalf or pressured them into accepting prescribed medications, effectively sidelining their own voices. This issue was compounded by a general lack of prior knowledge about antipsychotics, compelling patients to undertake their own research to understand their medications. The study also revealed that the diagnosis and ongoing treatment had profound social consequences, leading to social exclusion and difficulties in maintaining friendships for many young adults.

The findings underscore an urgent need for reforms in psychiatric care. Healthcare systems must acknowledge and address the power imbalances that influence young adults' experiences with antipsychotics. Recommendations include the development of co-created online and physical resources, designed collaboratively with individuals who have lived experience of antipsychotic side effects. Such resources, tailored for young adults, could serve as models for fostering greater autonomy and active participation in their care. By integrating these practices, psychiatry can move closer to its espoused ideals of person-centered care and truly empower patients in their treatment journeys.