Burden Experienced by Primary Caregivers of Children With Psychotic Disorders and at Clinical High Risk for Psychosis

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Abstract
Background: Despite the existing research exploring caregiver burden in adult psychosis, few studies have examined the experience of providing care to children diagnosed with psychotic disorders (PDs) and those identified as having clinical high risk for psychosis (CHR-P). Aim: This study measured the level of burden in caregivers of children with PD and CHR-P and examined associated risk factors, including social support, caregiver–child relationship, severity of illness, and frequency of psychiatric hospitalizations. Methods: A total of 56 caregivers completed validated measures and provided demographic information. Measures included the Zarit Burden Interview, the Multidimensional Scale of Perceived Social Support, the Behavior Assessment System for Children, Third Edition, Parenting Relationship Questionnaire–Child and Adolescent Form (BASC-3 PRQ-CA), and the Clinical Global Impression–Severity scale. Results: The majority of caregivers were women (86%), mothers (84%), White (63%), married (66%), working full-time (50%), college-educated (79%), and whose mean age was 45.7 years ( SD = 8.09). Nearly half of the caregivers (45%) reported a high level of caregiver burden, 39% rated their burden in the mild to moderate range, and 16% reported little to no burden. There was no significant difference in mean burden between PD and CHR-P groups. Higher caregiver burden was associated with lower levels of social support ( r = −.408, p = .002), lower levels of parenting confidence ( r = −.514, p < .001), higher levels of relational frustration ( r = .612, p < .001), and higher severity of illness ( r = .316 p = .025). Conclusions: These findings underscore the critical unmet need for support for caregivers of children with PD and CHR-P. Applications to clinical practice are discussed.
Funding Information
  • Boston Children’s Hospital (Inquiry Investment Drives Evidence into Action (ID)

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