Exploring the Experiences of Receiving the Label ‘Treatment Resistant’ for People with a Diagnosis of Schizophrenia

There is a wealth of research which focuses on the impact a diagnosis of schizophrenia or schizoaffective disorder can have on people’s lives. Less common is research which explores how the additional label of treatment resistant has affected this cohort of people. Previous literature is overwhelmingly quantitative and indicates the label is synonymous with a biogenetic approach to causality and treatment, with little hope given for recovery. The aim of the current study was to explore the experiences of those who have been diagnosed with schizophrenia and schizoaffective disorder and received the label of treatment resistant. Participant perspectives on the explanations for them receiving the label were sought, along with the effects it had on treatment, their perspectives and the perspectives of others. The study utilised a qualitative design and conducted semi-structured interviews with seven participants, six of whom had a diagnosis of schizophrenia and one of whom had a diagnosis of schizoaffective disorder. The resulting data was analysed using Thematic Analysis. Six themes were constructed: ‘Effects of a psychosis diagnosis’, ‘Antipsychotic medication in the treatment resistant context’, ‘Explanatory models of distress and treatment resistance’, ‘Effects of the treatment resistant label on service user’s perceptions’, ‘Effects of the treatment resistant label on others’ and ‘Sources of meaning and support’. The study found that the treatment resistant label can have a damaging effect on those who receive it, particularly in the context of participants’ pre-existing psychosis diagnosis which is already highly stigmatised. The label was reported to be associated with reduced hope for recovery from both mental health staff and participants themselves, underpinned by ideas around personal responsibility and chronicity. The treatment resistant label was linked to severe medication side effects and shaped which treatment was offered, or not, to participants. Implications of the study are considered at policy, research, practitioner and service user level.