Palliative Care Social Work Intervention for Families of Children with Chronic Neurological Conditions: A feasibility Study

This study adopts a repeated-measures design to assess the feasibility of a family-centred palliative care social work intervention for parents/caregivers of children with developmental regression due to chronic neurological conditions (CNC). Conducted in the Inpatient Pediatric Neurology Unit at NIMHANS, Bangalore, the study will recruit 40 participants through consecutive sampling. Inclusion criteria are caregivers of children with developmental regression admitted to the ward and able to communicate in Tamil, Kannada, Malayalam, English, or Hindi. Exclusion criteria include acute/treatable neurological conditions, refusal, or inability to follow-up. The study has three phases. Phase 1 involves developing a culturally adapted intervention module through literature review, in-depth interviews with caregivers and subject experts, thematic analysis, Delphi validation, and pilot testing. Phase 2 delivers the intervention and assesses outcomes at baseline, 3 months, and 6 months. Phase 3 involves data analysis and reporting. Intervention components include psychosocial assessment, communication of prognosis, supportive psychotherapy, advocacy, anticipatory care planning, networking with support services, and grief counselling. Primary outcomes are improvements in caregiver psychological and social functioning, burden, and coping. Secondary outcomes include social support, empowerment, and family quality of life. Data will be collected using PedsQL 4.0, PedsQL Family Impact Module 2.0, Children’s Palliative Outcome Scale, Symptom Profile for Neurodegenerative Diseases in Children, and a core outcome checklist. Qualitative data will undergo thematic analysis, and quantitative data will be analysed using RMANOVA or Friedman test. Feasibility will be evaluated using the SAFE framework. Ethical clearance, CTRI registration, and written informed consent will be obtained.