1 - (SYM 25) Unmet Needs of Caregivers Engaged with a Schizophrenia Nonprofit

Introduction: The Schizophrenia & Psychosis Action Alliance (S&PAA) is a non-profit organization serving those impacted by schizophrenia-spectrum conditions. Among the services provided by S&PAA are a non-crisis email/phone helpline and educational information, primarily to those who are unable to find adequate treatment. The community we serve is about 70% caregivers and 30% those with schizophrenia. This project explores the self-described needs for education and support of caregivers of those with schizophrenia. 

Methods: Three months of helpline contacts from caregivers from November 2023 to January 2024 were coded by two independent raters for (a) caregiver relationship; (b) reason for calling; and (c) nature of resources needed. Additionally, a complementary survey of educational needs was completed by 119 caregivers to identify the most important topics to them and their learning preferences. 

Results: Of 205 calls from caregivers, 65% were parents, 11% siblings, 6% children, 8% spouses, and 10% were other family members or relations. The most common reasons were calling were the requests for emotional support (35%), challenges communicating with their loved one (e.g., about the need for treatment; 20%), addressing housing needs and homelessness (20%), safety concerns (e.g., concerns about abuse within hospital systems, violent behavior at home; 17%), and accessing treatment (32%). Specific subtopics within these categories (e.g., needing to understand the justice system, knowing how to advocate for their loved one) and the nature of resources needed (e.g., a guide for how to locate housing resources) will be discussed. A complementary survey of educational needs was also conducted with 119 caregivers, who reported that their top 5 education needs were: (a) evidence-based treatments; (b) housing resources; (c) supporting their loved one when they do not believe they have an illness; (d) legal and financial planning; and (e) current science. Caregivers reported that they preferred to learn through short videos and podcasts.  

Discussion: The above information lays the framework for the creation of resources to fulfill the needs of caregivers who are struggling to get connected to comprehensive treatment programs. The nature of the needs and resources to be developed will be discussed.