Caregiver Burden, Stress, and Relationship Cohesion Among Self-Identified Caregivers of Children with PANS

Tona JT, Ash J, Brown E, Campagna C, Kostek K, Lawton E, Rieth A, Tomita M. Caregiver Burden, Stress, and Relationship Cohesion Among Self-Identified Caregivers of Children with Pediatric Acute-Onset Neuropsychiatric Syndrome. J Child Adolesc Psychopharmacol. 2023 Nov;33(9):378-386. doi: 10.1089/cap.2023.0030. PMID: 37966363; PMCID: PMC10771873.
  • Among the 216 respondents, 79.6% exceeded the CBI threshold, indicating a need for respite in adult care receiver populations. On the CSAQ, 72.9% expressed high distress, 80.5% reported feeling overwhelmed, and 58.1% reported crying spells, meeting cutoffs for support/respite used in adult care receiver populations.
  • The majority of caregivers (85.5%) reported not having the desired degree of cohesion with their child on the IOS. Parents of children with more severe PNSS symptoms performed significantly worse on all measures (CBI: H = 57.83; CSAQ: F = 29.26; IOS: H = 38.04; p < 0.001 for all).

Common Comment Themes

  1. Severe caregiver and/or family emotional distress and trauma.
  2. Caregivers wondering what happened to their child.
  3. Lack of awareness and support among health and education professionals.
  4. Relationship strain with family, friends, and significant others.
  5. Financial and/or legal struggles due to their child’s diagnosis.

Conclusion: There is strong need for support and respite for children with PANS and their families. Long-term effects including posttraumatic stress symptoms among family members should be studied.”

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