A Qualitative Research Study On the Subjective Experience of Youths Identified As At Clinical High Risk for Developing Psychosis

Background and Purpose: Little is known about the subjective experience of young people at clinical high-risk for psychosis, characterized as having subclinical psychotic symptoms or a significant decline in function based on  genetic risk. Up to 25-30% of these individuals eventually develop a psychotic disorder. Understanding their subjective experiences can help explain the phenomenology of emerging psychosis, including previously unrecognized symptoms, and can  inform the development of effective services and policy. This study aims to assess participants’ perspectives on changes they have experienced over time, current or past symptoms, and the impact of these symptoms on help seeking behavior, and plans for their future.

Methods:  We conducted open-ended interviews of one hour in length with high risk youth (i.e. those identified as putatively prodromal) at the Center of Prevention and Evaluation (COPE), an out-patient  clinic serving these youth at New York State Psychiatric Institute.  We then conducted a phenomenological analysis of the transcripts using consensus review to better understand the configuration of experience among this vulnerable population.  After transcribing the interviews, each member of the research team identified themes evident in each transcript; they then met together to conduct a consensus review and appraisal of  themes.

Results: We interviewed 27 young adults (15 males, 12 females). We identified four distinct themes among the men: 1) descriptions of self using words such as “crazy”, “abnormal, and “broken.”  2) feelings of isolation and alienation, difficulties communicating, feeling misunderstood, and a desire to connect,  3) wish to escape from their situation through running away or through fantasy, imagination and videogames, and  4) feelings of hope and hopelessness as well as where they saw themselves in the future. We identified four distinct themes among the women:  1)   struggling with intimate relationships with family members and romantic partners, 2) fear of developing schizophrenia and being a burden on family because of illness, 3) feeling different then others, and related struggles with social anxiety and connecting with others,  4) clearly stated goals and ambitions for the future. 

Conclusion and Implications: There has been some phenomenological research on the experiences of families facing onset psychosis and individuals with first-episode psychosis and there is limited documentation on the experiences of individuals at risk for developing psychosis. However none focuses on gender differences in these high-risk groups. Furthermore, the clinical high risk diagnosis has been proposed for inclusion in the upcoming DSM-V. If established as a formal diagnosis, it is likely that social workers will be providing the majority of direct services to these individuals, especially given that psychosocial interventions have demonstrated efficacy with this population and the use of antipsychotic medication, conversely, has been viewed as unethical and possibly non-efficacious. Social workers therefore should be aware of subjective experiences among these individuals in order to more effectively engage and provide effective services.