Mapping the Psychosocial and Rehabilitative Needs in Pediatric Neuro-palliative Care: A Qualitative Framework Analysis from India

Background: Children with chronic progressive neurological conditions impose profound and enduring psychosocial burdens on their families across a prolonged illness trajectory. This includes anticipatory grief, complex medical decision making, extended caregiving burdens, and disrupted psychological and social functioning. Objective: This study aimed to explore the psychosocial needs of children with chronic neurological conditions and their families who require palliative care, as perceived by key clinical and patient-advocacy stakeholders, thereby establishing an actionable, family-centred therapeutic and rehabilitative pathway. Methods: A qualitative framework analysis was applied, comprising 17 interdisciplinary expert consultations (pediatric neurologists, palliative care physicians, clinical social workers, nurses, physiotherapists, occupational therapists, clinical neuropsychologists, policy advocates, and dietitians). Interviews were audio-recorded, transcribed verbatim, and analysed using the Framework Analysis approach to enable systematic comparison across expert accounts. Results: Five interlinked domains were charted: (1) diagnostic uncertainty and delay, marked by prolonged "diagnostic odysseys," missed early symptoms, and fragmented communication; (2) caregiver burden, including maternal guilt and blame around genetic attribution, marital strain, and anticipatory grief; (3) financial toxicity from recurrent treatment, travel, and lost employment, compounded by inequitable insurance and scheme coverage; (4) social and educational exclusion of the child, driven by stigma, inaccessible school infrastructure, and sibling neglect; and (5) systemic gaps in early and integrated palliative care, communication training for clinicians, and locally accessible multidisciplinary/support-group networks. Experts converged on late referral to palliative services and inadequate genetic/diagnostic counselling as pivotal, modifiable points of failure. Conclusions: Expert stakeholders converge in identifying multidimensional, evolving psychosocial needs among children with chronic neurological conditions and their families in India, driven largely by late palliative care integration, poor communication of diagnosis and prognosis, and fragmented support systems. These findings underscore the need for a structured, social work-led intervention that embeds early psychosocial screening, caregiver counselling, and care navigation across the illness trajectory.