Symposia
Adult Anxiety
Hannah E. Frank, Ph.D. (she/her/hers)
Postdoctoral Fellow
The Warren Alpert Medical School of Brown University
Providence, Rhode Island
Grace Cain, BA
Research Assistant
The Warren Alpert Medical School of Brown University
Providence, Rhode Island
Jennifer Freeman, PhD
Professor
The Warren Alpert Medical School of Brown University
Pr, Rhode Island
Kristen G. Benito, PhD
Associate Professor of Psychiatry and Human Behavior
Alpert Warren Medical School of Brown University, Pediatric Anxiety Research Center, Bradley Hospital
Riverside, Rhode Island
Erin O'Connor, PhD
Assistant Professor
The Warren Alpert Medical School of Brown University
Providence, Rhode Island
Josh Kemp, PhD
Assistant Professor
The Warren Alpert Medical School of Brown University
Providence, Rhode Island
Bo Kim, PhD
Assistant Professor
VA Center for Healthcare Organization and Implementation Research
Boston, Massachusetts
Background: Youth with anxiety and obsessive compulsive disorder (OCD) struggle to access exposure therapy, an evidence-based treatment. Common barriers include transportation, waitlists, and provider availability. Efforts to improve access to exposure require an understanding of the process that families take to find therapists, yet no prior studies have examined parents’ perspectives of the steps involved. Process mapping is a stakeholder-informed, data-driven approach to creating a detailed flow chart that identifies the steps in complex activities. It allows for assessment of inefficiencies (repeated steps) and bottlenecks (delays between steps). This study used process mapping to assess parent-informed barriers and to identify points of intervention for improving access to exposure.
Methods: Parents of youth with anxiety and OCD (N=17, 94.1% female, 76.5% white) were recruited until thematic saturation was reached. Parents completed questionnaires and attended an online focus group during which they were asked to describe each step they took - from recognizing their child needed treatment to beginning exposure. A process map was created and shown in real-time, edited for clarity, and emailed to parents for member checking. Authors analyzed process maps to identify common themes.
Results: Several themes emerged, as visually represented in a final process map. Participants identified a “search-outreach” loop, in which they repeated the cycle of looking for therapists, contacting them, and being unable to schedule an appointment due to factors such as cost, waitlists, and travel time. Parents often did not know about exposure and reported feeling guilty about their lack of knowledge and inability to find a suitable provider. Parents reported frustration that medical providers did not often know about exposure and sometimes dismissed parents’ concerns. Participants emphasized the difficulty of navigating the mental health system; many reported that it took years to find an exposure therapist, and that the search was sometimes stalled due to fluctuating symptoms.
Conclusions: A common thread among identified barriers was the amount of burden placed on parents to find treatment with limited support, and the resultant feelings of isolation and guilt. Findings point to several directions for future research, such as the development of parent support groups for navigating the mental health system; enhancing coordination of care between medical and mental health providers; and streamlining referral processes.