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Published on: August 25, 2014
The Lived Experience and Psychosocial Impact of Caring for a Child with Pediatric Acute-Onset Neuropsychiatric
Samantha Cuming1, Maria Kangas2,3
1School of Psychological Sciences, Macquarie University, Sydney, NSW, 2109, Australia. samantha.cuming@hdr.mq.edu.au.
Insights
Caring for a child with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) causes significant psychosocial impacts and caregiver burden. Families face systemic barriers but also demonstrate proactive coping strategies.
Area of Science:
- Pediatric neuropsychiatry
- Systematic reviews
- Mixed methods research
Background:
- Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) presents with abrupt neuropsychiatric symptoms.
- PANS onset is often triggered by infections or other factors.
- Understanding the caregiver experience is crucial for PANS management.
Purpose of the Study:
- To systematically review and synthesize evidence on the lived experiences of caregivers for children with PANS.
- To explore the psychosocial impacts of PANS on families.
- To identify challenges and coping mechanisms in PANS caregiving.
Main Methods:
- Mixed methods systematic review of 17 moderate to high-quality publications.
- Qualitative meta-aggregation to synthesize lived experiences.
- Narrative synthesis of quantitative findings on caregiver burden and distress.
Main Results:
- Caregivers reported broad psychosocial impacts, shock, and uncertainty due to PANS onset and flares.
- Systemic barriers in diagnosis, treatment, and educational support were identified.
- Increased caregiver burden, psychological distress, and relationship dissatisfaction were noted.
- Disease activity, diagnostic delays, and disruption to daily life exacerbated impacts.
Conclusions:
- Clinical recognition of PANS requires improvement.
- Enhanced support for caregiver and family wellbeing is essential.
- Addressing systemic barriers can alleviate PANS caregiving challenges.
Abstract:
Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is characterized by the abrupt onset of neuropsychiatric symptoms, including obsessive-compulsive disorder and/or restricted food intake, in response to infection or other triggers. This mixed methods systematic review synthesized evidence on the lived experience and psychosocial impacts of caring for a child with PANS. Seventeen publications of moderate to high quality met eligibility criteria. Four synthesized findings emerged from the qualitative meta-aggregation: (i) broad psychosocial impacts on caregivers and families; (ii) shock and ongoing uncertainty arising from the sudden, severe onset and unpredictable symptom flares; (iii) pervasive systemic barriers to timely diagnosis, treatment, and educational support; and (iv) caregivers' proactive responses to the challenges of navigating PANS. Narrative synthesis of quantitative findings highlighted increased caregiver burden, and elevated psychological distress and relationship dissatisfaction. Disease activity, diagnostic and treatment delays, and disruption to schooling and employment were associated with greater impact. Implications for improving clinical recognition and supporting caregiver and family wellbeing are discussed.
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