Caregiver Burden,Stress,& Relationship Cohesion Among Caregivers of Children With Pediatric Acute-Onset Neuropsychiatric Syndrome

Abstract

Date Presented 04/22/2023

Children with pediatric acute-onset neuropsychiatric syndrome (PANS) experience sudden neuropsychiatric symptoms after infection. This study investigated the relationship between children’s severity of symptoms and caregiver burden and degree of cohesion between the caregiver and care recipient.

Primary Author and Speaker: Janice Tona

Additional Authors and Speakers: Julie Ash, Emily Brown, Courtney Campagna, Kellie Kostek, Erin Lawton, Andrea Rieth

OBJECTIVE: Children with Pediatric Acute Onset Neuropsychiatric Syndrome (PANS) experience severe, sudden neuropsychiatric symptoms following infection, which is very difficult for caregivers. Previous research indicates functional decline in all aspects of daily life during exacerbation. This study investigated the relationship between children’s severity of symptoms and caregiver burden/stress and degree of cohesion between the caregiver/care recipient within this population.

METHOD: This cross-sectional study used an online survey of 216 parents recruited from PANS-related social media. The PANS Symptom Severity Scale (SSS) measured current severity of each child’s symptoms. The Caregiver Burden Inventory (CBI) and Caregiver Self-Assessment Questionnaire (CSAQ) assessed burden and stress and the Inclusion of Other in the Self Scale (IOS) determined caregiver-perceived current and desired cohesion with their child(ren) with PANS.

RESULTS: Most caregivers (73.4%) reached the CSAQ cutoff for experiencing distress, and most (79.6%) met the CBI cutoff for high risk for burnout. Also, most (73.0%) indicated they did not have the degree of cohesion desired with their child with PANS as noted on the IOS. One-way ANOVA found parents of children with more severe symptoms as measured by the SSS fared significantly worse on all measures (CBI: F=19.255; CSAQ: F=27.508; IOS: F=10.490, p<.001 for all). Content analysis of comments revealed five themes (1) lack of awareness and support among health and education professionals, (2) financial and/or legal struggles due to child’s diagnosis, (3) severe caregiver and/or family emotional distress and trauma, (4) relationship strain with family, friends, and significant others, and (5) ‘what happened to my child?’

CONCLUSION: Results indicate a need for respite and support for children with PANS and their families. Studies on post-traumatic stress disorder among parents and studies of the emotional effects on siblings are warranted.

References

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