AIM: This qualitative study examined the lived experience of associative stigma for parents of adolescents at clinical high risk for psychosis. A central goal was to empower families to tell their stories and to use the themes that emerge from this narrative data to make recommendations that might support families coping with a loved one being diagnosed with risk for psychosis.
METHODS: Twelve parents of adolescents diagnosed with the clinical high risk for psychosis syndrome were interviewed using a semi-structured approach. The qualitative study employed Interpretative Phenomenological Analysis (IPA) to focus on experiences of associative stigma and the way parents make sense of these experiences.
RESULTS: From these interviews, the researcher identified themes and subthemes categorized into major domains that represent topics particularly relevant to these 12 parents. Two main domains emerged as particularly salient to parents' experiences with associative stigma: perceptions of stigma and coping with stigma.
CONCLUSIONS: Participants' insights demonstrated increased experience of stigma associated with psychotic-like symptoms as compared to other psychiatric symptoms, attempts to balance fighting against stigma with the privacy needs of adolescents, and participation in research as less stigmatizing than non-specialty care. Stigma impacted treatment-seeking and participation in family groups that were seen as both potentially supportive and threatening. The interviews provided an opportunity for these families to voice their unique experiences, which expands the literature on the topic of caregivers of adolescents at risk for psychosis as treatment programs for the clinical high risk syndrome expand across the United States.