Family and informal carers' views and experiences of antipsychotic reduction / discontinuation

Introduction

Family members and informal carers play important roles in supporting or monitoring medicine-taking for people with schizophrenia and associated disorders. However, their views on antipsychotic medication are under-researched, particularly in relation to reduction processes that are gradual and clinically guided.  This study explored family members’ views and experiences of gradual antipsychotic reduction / discontinuation within a medication reduction research trial. 



Method

Semi-structured interviews were conducted with 15 family/informal carers of people with recurrent psychosis who reduced / discontinued antipsychotics with clinical guidance over 24 months as part of the ‘RADAR’ randomised controlled trial. Data were analysed using thematic analysis. 



Results

Most carers observed improvements in social engagement, daily functioning or identity when their loved one started reducing antipsychotics. Some experienced challenges related to mental health deteriorations or relapses in the person they cared for. Carers described a state of vigilance about their loved one’s mental health that was heightened during the medication reduction period. They often felt they were better able to detect warning signs of deterioration than clinicians. Many carers wished they had known about the trial earlier and been more involved. Some expressed cautious optimism for future clinically guided medication reductions, although complete discontinuation was deemed less viable by many. 



Discussion

The study highlights the importance of family/informal carers’ knowledge and support in medication management. Carers bring valuable perspectives that differ from those of both service users and clinicians. Findings suggest that services should endeavour to include carers’ views in decisions about, monitoring and support of changes or reductions to antipsychotics.