A Qualitative Study of Antipsychotic Medication Experiences of Youth

Abstract

Objective: To explore the lived experience of youth who are prescribed antipsychotics.

Methods: We conducted an interpretive phenomenology study of young people with recent experience of taking antipsychotics. Youth were interviewed and a staged approach was used for data analysis of transcriptions. We collected approximately 13 hours of audio from 18 youth aged 13 to 26 years between January and August of 2010.

Results: Ambivalence was significant and antipsychotic adverse effects frequently tempered benefits. Both illness and antipsychotics had significant impacts on physical and mental wellbeing with adverse effects on relationships and functioning in various contexts (e.g., school). Stigma related to both antipsychotics and illness was also prominent. Participants' limited knowledge about their antipsychotics and pressure to conform within their youth culture and context affected decisions on starting, adhering to, and persisting with treatment.

Conclusions: The lived experience of youth taking antipsychotics is complex and the benefits (e.g., symptom improvement) and consequences (e.g., adverse effects) associated with antipsychotics affect all facets of life. More research is needed to better understand youth priorities in treatment decisions and whether youth who demonstrate substantive gaps in their knowledge about antipsychotics are truly given the opportunity to be informed and engage in management decisions including whether to initiate, persist with, and discontinue treatments.

Keywords: antipsychotic agents; decision-making; pediatrics; physician-patient relations; qualitative research; young adults.

Figure 1.

Youth antipsychotic experience as a double-edged saw Youth participants’ experiences with antipsychotics, reflecting the ambivalence, tension and vacillating nature of the relationship between youth and their medicine. Youth ambivalence and conflict with treatment co-existed with a desire for alternative therapies represented by the saw teeth and the physical use of the saw (i.e., push and pull). There were significant gaps in knowledge, access to adequate information, and personal and health care service supports experienced by youth in our study and are represented by the saw teeth. These gaps were often acknowledged and seen as significant for youth but they had limited ability and understanding about how to bridge the gaps. Ultimately, this led to placement of the prescriber and youth treatment decisions on opposing sides with a disconnect between the groups. The metaphor serves to depict the language used by youth in the journey of starting and persisting with treatments in a passive manner with changes being done to them as opposed to an active participant in decision-making. They discussed being “upped”, “discontinued”, “tapered off”, as instructed by clinicians and also their own process of tapering or stopping medications in an undulating pattern.