Caregiver Burden and Palliative Care Needs among Families of Children with Subacute Sclerosing Panencephalitis

Introduction:

Subacute sclerosing panencephalitis (SSPE) is a chronic progressive neuroinflammatory disorder of childhood causing severe neurological impairment and increasing dependence on family caregivers. Disease progression increases caregiving demands and palliative care needs. However, evidence on caregiver burden and family palliative care needs remains limited. This study assessed caregiver burden and palliative care needs among families of children with SSPE.

Methods and Materials:

Primary caregivers of children with an established diagnosis of SSPE (N=31), registered in the Department of Neurology, NIMHANS, and referred to the multidisciplinary Neuropalliative Care Clinic, were recruited for this cross-sectional study. Following informed consent, caregivers completed a structured interview for sociodemographic information. Children’s functional status was assessed using the Palliative Performance Scale Version 2 (PPSv2). Caregiver burden was assessed using the Zarit Burden Interview (ZBI), and caregiver-reported symptom concerns were assessed using the Integrated Palliative Care Outcome Scale–Caregiver Version (IPOS-CG). Open-ended questions explored caregivers’ perceived palliative care needs. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using thematic analysis.

Results:

Most caregivers were female (n=19). Mean child and caregiver ages were 8 (SD 2.6) and 34 (SD 6.3) years, respectively. Mean illness duration was 7.9 (SD 5.1) years. The mean PPSv2 score was 30 (SD 11). The mean ZBI score was 45.7 (SD 15.5); 61.3% reported moderate-to-severe burden. The mean IPOS-CG score was 39.8 (SD 8.9). Thematic analysis identified six caregiver-perceived palliative care need themes: disease-related information and caregiver education, financial and welfare support, psychological and emotional support, long-term care planning, healthcare access and care coordination, and family and social support.

Conclusion:

Families caring for children with SSPE experience substantial caregiver burden and diverse palliative care needs. Family-centred palliative care that includes psychosocial support, caregiver education, and multidisciplinary services may help address these needs and improve the quality of care for children and their families.