The least worst option: user experiences of antipsychotic medication and lack of involvement in medication decisions in a UK community sample

Abstract

Background: Treatment decision-making that fully involves service users is an aim across medicine, including mental health.

Aim: To explore service users experiences of taking antipsychotic medication for psychotic disorders and their perceptions of decision-making about this.

Method: Semi-structured interviews with 20 users of community mental health services, conducted by service user researchers and analysed using thematic analysis.

Results: Antipsychotic medication was perceived to have beneficial effects on symptoms and relapse risk, but adverse effects were prominent, including a global state of lethargy and demotivation. Weighing these up, the majority viewed antipsychotics as the least worst option. Participants were split between positions of “willing acceptance”, “resigned acceptance” and “non-acceptance” of taking antipsychotics. Many felt their choices about medication were limited, due to the nature of their illness or pressure from other people. They commonly experienced their prescribing psychiatrist as not sufficiently acknowledging the negative impacts of medication on life quality and physical health concerns and described feeling powerless to influence decisions about their medication.

Conclusion: The study highlights the complexity of agendas surrounding antipsychotic medication, including the pervasive influence of coercive processes and the challenges of implementing collaborative decision-making for people with serious mental health problems.

Keywords:

• Antipsychotics
• schizophrenia
• subjective experience of antipsychotics
• decision making
• qualitative research

Acknowledgements

Views expressed are those of the authors and do not necessarily represent those of the NHS, the NIHR or the Department of Health. We wish to thank members of SE-SURG, particularly the organizer Lyn Kent and our participants.

Declaration of interest

Funding was provided by the National Institute for Health Research. There are no conflicts of interest.

Notes

¹ Compulsory admissions to hospital under a section of the Mental Health Act of England and Wales.

² Lengths of pause in seconds.