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Evaluation ViewAttendees 2

Schizophrenia / Psychotic Disorders
Symposia

Symposium 25 - Expanding Schizophrenia Services to Address the Unmet Needs of Caregivers

Friday, November 15, 2024
10:30 AM – 12:00 PM EST
Location: Regency Ballroom A, Second Floor Mezzanine, Loews Hotel
CE: 1.5

Keywords: Schizophrenia, Underserved Populations, Families
Level of Familiarity: Advanced
Recommended Readings: Vaswani-Bye A, McCain C, Blank JM, Tennison ME & Kopelovich SL (2024). A thematic analysis investigating the inaugural Psychosis REACH Family Ambassador Peer Training Program. Neuropsychiatric Disease and Treatment, 20:, 233-245, DOI: 10.2147/NDT.S432255,   Kingston C, Onwumere J, Keen N, Ruffell T & Kuipers E (2016) Posttraumatic stress symptoms (PTSS) in caregivers of people with psychosis and associations with caregiving experiences. Journal of Trauma & Dissociation, 17, 307-321, DOI: 10.1080/15299732.2015.1089969 ,   Citrome L, Belcher E, Stacy S, Suett M, Mychaskiw M & Salinas GD (2022) Perceived burdens and educational needs of caregivers of people with schizophrenia: Results of a national survey study. Patient Preference and Adherence, 16, 159-168, DOI: 10.2147/PPA.S326290 
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Caregivers of individuals with schizophrenia experience chronic and severe stress with minimal support. Existing interventions primarily focus on how to support their loved one with schizophrenia (e.g., psychoeducation). While such interventions are critical, the well-being of caregivers themselves has received less attention. This symposium explores the unmet needs of caregivers, and presents recommendations for how to expand services to meet these needs.

Dr. Nagendra will present data from caregivers engaged with a nonprofit organization called the Schizophrenia & Psychosis Action Alliance. She will characterize the needs of over 200 caregivers who have contacted a helpline over the course of three months as well as results from a survey of 114 caregivers regarding their most important educational needs. Dr. Nagendra will describe implications in terms of needed resources for caregivers who are in the process of seeking care or are not connected to adequate treatment.

Mr. Stiles will characterize the types of stressful events experienced by caregivers in their role, and how they relate to post-traumatic stress symptoms. He will also explore the relationship between post-traumatic stress and other aspects of caregiver well-being (e.g., coping styles). Preliminary analyses indicate that over half of caregivers reported experiencing stressful caregiving-related events, including psychiatric hospitalizations, involvement of law enforcement, and risky/unpredictable behavior. Moreover, nearly half of caregivers described that their loved one’s life was in danger during a crisis. The implications of these findings on research related to caregiver needs will be discussed.

Ms. Crumbie will present the results from a qualitative study of coordinated specialty care clinics in North Carolina, in which 42 stakeholders (providers and those with lived experience) were interviewed about how to improve services for Black clients and family members. Themes that emerged regarding caregivers’ needs include stigma surrounding mental illness within Black communities, discriminatory experiences, and lack of relatability to distinct experiences of Black individuals. Caregivers reported little value in support groups where the majority of the participants were white. Ms. Crumbie will present recommendations based on these findings, including starting Black-only family support groups.

Dr. Kopelovich will present on a CBT for psychosis intervention called Psychosis REACH (Recovery by Enabling Adult Carers at Home). Psychosis REACH includes psychoeducation, caregiver self-care, and CBT skills coaching for caregivers; it is co-delivered by CBTp experts and family peers. Dr. Kopelovich will present quantitative and qualitative data related to engagement, retention, and reach. Findings indicate that family peer trainees felt equipped to support other families and were comfortable with their role, but only 17 (36.17%) had provided skills coaching to families by 6 months post-training. Lessons learned and adaptations will be discussed.

This symposium will be chaired by Dr. Nagendra. The discussant will be Dr. Shirley Glynn, who has over 35 years of research and clinical experience with family interventions for schizophrenia.

Learning Objectives:

At the end of this session, the learner will be able to:
  1. Characterize adversities faced by caregivers of those with schizophrenia, including their unmet needs.
  2. Describe the impact of caregiver adversities on mental health, including post-traumatic stress symptoms.
  3. Explain the unique needs of Black caregivers, especially as they pertain to stigma, discrimination, and therapeutic alliance.
  4. Describe novel therapeutic interventions in development to address unmet caregiver needs.
  5. Identify areas and skills for future intervention to address unmet caregiver needs in schizophrenia.

Presentations:

  • 10:30 AM – 12:00 PM EST
    (SYM 25) Unmet Needs of Caregivers Engaged with a Schizophrenia Nonprofit

    Speaker: Arundati Nagendra, Ph.D. (she/her/hers) – Schizophrenia & Psychosis Action Alliance

  • 10:30 AM – 12:00 PM EST
    (SYM 25) Post-traumatic Stress Symptoms and Correlates in Caregivers of Young Adults with Early Psychosis

    Speaker: Bryan Stiles, M.A. (he/him/his) – University of North Carolina at Chapel Hill

    Co-author: Bryan Stiles, M.A. (he/him/his) – University of North Carolina at Chapel Hill

    Co-author: Kelsey Ludwig, Ph.D. (she/her/hers) – University of North Carolina at Chapel Hill

    Co-author: Elizabeth Fraser, M.S. (she/her/hers) – University of North Carolina at Chapel Hill

    Co-author: John Gleeson, Ph.D. (he/him/his) – Australian Catholic University

    Co-author: Diana Perkins, M.D., M.P.H. (she/her/hers) – University of North Carolina at Chapel Hill

    Co-author: David Penn, Ph.D. – University of North Carolina at Chapel Hill

  • 10:30 AM – 12:00 PM EST
    (SYM 25) Beyond Stigma: Culturally Sensitive Support for Families of Black Americans with Psychosis

    Speaker: Maia Crumbie, M.A. (she/her/hers) – University of Maryland, Baltimore County

  • 10:30 AM – 12:00 PM EST
    (SYM 25) Training Families to Train Families in Cognitive Behavioral Techniques for Psychosis

    Speaker: Sarah L. Kopelovich, Ph.D. – University of Washington School of Medicine

    Co-author: Akansha Vaswani-Bye, Ph.D. (she/her/hers) – University of Washington, Seattle

    Co-author: Helen Teresa Buckland, PhD (she/her/hers) – University of Washington School of Medicine

    Co-author: Victoria T. Shepard, B.S. (she/her/hers) – University of Washington School of Medicine