Family and informal carers’ views and experiences of antipsychotic reduction and discontinuation within a medication reduction research trial

Abstract

Background: Family/informal carers play important roles in supporting or monitoring medicine-taking for people with recurrent psychosis, but their views on antipsychotic medication are under-researched. Aim: To explore family/informal carers’ views and experiences of antipsychotic reduction and discontinuation within a medication reduction research trial (Research into Antipsychotic Discontinuation And Reduction [RADAR]). Method: Semi-structured interviews with 15 family/informal carers of participants in the antipsychotic reduction/discontinuation arm of RADAR who had completed the trial up to one year previously. Data were analysed using thematic analysis. Results: Most carers observed improvements in social engagement, daily functioning or identity, and challenges related to mental health over the 24-month reduction period. Carers described a general state of vigilance that was heightened during the trial, and often felt they were better at detecting warning signs of deterioration than clinicians. Carers’ views did not necessarily reflect their loved ones’ relapse status. Many wished they had been more involved in the trial. Some expressed cautious optimism for future reductions, although complete discontinuation was generally deemed less viable. Conclusions: Carers’ perspectives on antipsychotic reductions within the RADAR trial complement main trial findings and explorations of service users’ experiences. Clinicians should endeavour to include carers in decisions about, monitoring and support of changes or reductions to antipsychotics.