Caregivers’ Mental Health in Early Course Psychosis

Emily R. Kline, PhD, Heather Thibeau, BA, Bediha Ipekci, PhD, Brooklyn Landis, Vicky Zheng, Nelsie Berberena, PsyD, Hannah E. Brown, MD

Boston University Chobanian
Avedisian School of Medicine, Boston, MA
Boston Medical Center, Boston, MA

Abstract

Background: Caregiving in psychotic disorders is associated with high levels of stress and burden and may also impact caregivers' own social and occupational functioning. Because caregivers play crucial roles in initiating treatment, facilitating rehabilitative activities, and ensuring treatment adherence for individuals with psychotic disorders, their wellness may be a significant and overlooked component of early psychosis intervention. The aim of the current study is to describe the characteristics of family caregivers who participated in the Motivational Interviewing for Loved Ones clinical trial and the impact of their loved one's psychosis on their own mental health.
Methods: Participants (n = 71) were recruited from 2020-2021 to a study offering communication skills training to family caregivers of individuals with early-course psychosis. Participants provided demographic information, completed the Perceived Stress Scale, and were assessed by a clinician using the adjustment disorder module of the Structured Clinical Interview for the DSM-5.
Results: Most participants (66%) were mothers of an individual with early-course psychosis, though fathers (28%), siblings (3%), and extended family members (2%) were also represented. The vast majority endorsed offering their loved one emotional support (97%), financial support (92%), advice or information (93%), and assistance with obtaining medical and mental health care (77%). Eighty-two percent reported a moderate or high level of stress. A substantial minority (35%) met criteria for a diagnosis of adjustment disorder relating to their loved one’s psychotic illness and an additional 8% reported that the circumstances exacerbated a previous diagnosis of depression, anxiety, or trauma related disorder. They described sleeplessness, loss of control, worry, guilt, sadness, relationship difficulties, and career disruptions. Adaptive coping strategies included prayer, compartmentalization, and researching potential solutions.
Conclusions: Caregivers reported significant personal anguish around the time of their child’s first episode of psychosis. Caregiver mental health is worthy of attention