A Novel Narrative E-Writing Intervention (NeW-I) for Parents of Children with Chronic Life-Threatening Illnesses: Protocol for an Open-Label Randomized Controlled Trial [post]

2019 unpublished
Conventionally, psycho-socio-emotional interventions for parents of children with chronic life-threatening illness begin post child loss. Evidence indicates pre-loss interventions addressing anticipatory grief can improve psychosocio-emotional well-being and grief outcomes among family caregivers of dying patients, but no known intervention addresses the unique psycho-socio-emotional needs of Asian parents facing their child's chronic life-threatening illness. Globally, palliative care strives
more » ... ative care strives to holistically support patients and their caregivers at the end-of-life, but inadequacies exist both globally and locally in pediatric palliative care and parental bereavement support services. Aim: A novel evidence-based Narrative e-Writing Intervention (NeW-I) is developed to address this gap. NeW-I is a strength-focused, meaning-oriented and therapistfacilitated mobile app and web-based counseling platform that aims to enhance quality of life, spiritual well-being, hope and perceived social support, and reduce depressive symptoms, caregiver burden and risk of complicated grief among parents facing their child's chronic life-threatening illness. Methods: The design of NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of bereaved parents of children with chronic life-threatening illness. Together with four major local pediatric palliative care providers, NeW-I is implemented in Singapore as an openlabel pilot randomized controlled trial with 66 parents and supplemented with a built-in accessibility and feasibility study. Discussion: NeW-I aspires to improve psycho-socio-emotional well-being of parents facing their child's chronic life-threatening illness through a structured cyber-
doi:10.21203/rs.2.12263/v1 fatcat:xc77nhg76rf6xdja5rbm5nzla4