‘SEEKING BALANCE’ Australian consumer experiences of antipsychotic discontinuation: a mixed methods study
Document TypePhD thesis
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© 2014 Dr. Carmela Salomon
Despite well-publicised high rates of antipsychotic discontinuation, to date little research has been conducted into the lived experience of stopping. This study uses a dialectic mixed methods approach to explore how people make sense of their attempts to stop antipsychotic medication and the societal conditions framing these attempts. In the context of an increasingly taken for granted biomedical mental illness discourse, this thesis problematises the ‘non-compliant’ consumer identity and brings into focus the complex decisional influences that underlie many discontinuation decisions. The thesis does not seek to assert a position on the value or use of antipsychotic medication, but instead tries to understand different medication related choices made by participants. This thesis responds to calls from within the consumer community for robust discussion around antipsychotic discontinuation that is framed by curiosity rather than paternalism. It is timely in light of increasing antipsychotic prescription rates, known high discontinuation rates and a lack of investment by the larger research community, to date, into peoples lived experiences during this time. The decision to focus exclusively on consumer voices reflects the transformative intent of the thesis to counterbalance both historical and contemporary experiences of consumer marginalisation from the research agenda. While the idea of this thesis sprung initially out of my work as a psychiatric nurse, I hope that its findings may be of interest to a broad range of consumers, clinicians, family members and policy makers. A dialectic mixed methodology is used to investigate both broad patterns and particularities of antipsychotic discontinuation. The preliminary self-administered survey tool, completed by 98 participants, elicited both qualitative and quantitative data relating to the context, experience and outcomes of past discontinuation attempts. In-depth interviews were then conducted with 20 of the survey respondents to develop a deeper explanatory and contextual understanding of their experiences. An Adornian critical theory approach to identity and dialectics informed the data analysis. Contrary to familiar portrayals of people who discontinue their antipsychotics as ‘lacking in insight’ or ‘non-compliant’, the majority of participants in this study described antipsychotic discontinuation as a conscious choice and were able to articulate contextualised and personally meaningful drivers behind this decision. These drivers included: problems in the therapeutic alliance; alternative mental health paradigms and treatment preferences; and the subjective balancing of cons above pros when assessing the impact of antipsychotics on life quality. Other key findings from the study included the strong secrecy and isolation that surrounded many discontinuation attempts, experiences of antipsychotic discontinuation syndromes and polarised discontinuation outcomes. The gaps between expected stereotypes of the ‘non-compliant’ or ‘insightless’ consumer and participants lived experiences are explored in terms of societal expectations of ‘proper’ patient and clinician roles, and contrasting ontological understandings of the nature of mental distress. I argue the following points in relation to practice improvement around antipsychotic discontinuation: - The widespread implicit policy of ‘zero tolerance’ to antipsychotic discontinuation described in this study may be contributing to a culture of consumer secrecy around discontinuation. - Adopting a more collaborative, transparent and consumer driven approach to discontinuation may help to decrease consumer isolation during discontinuation and mitigate potential harms. In order for such a shift to take place, however, the capacity of our mental health system to tolerate risk and support consumer choice will need to be re-imagined. - Greater research attention could be placed on antipsychotic discontinuation syndromes, and clinicians should begin to routinely provide consumers with access to this information from the point of prescription onwards. This thesis suggests that clinical focus on ‘compliance’ may not be an effective model for respectfully approaching decisions relating to antipsychotic medication. Clinicians and policy makers are invited to seek more genuinely transparent, collaborative and value-neutral pathways to support consumers who are contemplating or undertaking antipsychotic discontinuation.
Keywordsantipsychotic discontinuation; consumer perspectives; health communication; medication non-compliance; substance withdrawal syndrome
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- Nursing - Theses