Dutta, Oindrila ORCID: https://orcid.org/0000-0002-2925-2477, Tan-Ho, Geraldine, Low, Xinyi Casuarine, Tan, Toh Hsiang Benny, Ganapathy, Sashikumar, Car, Josip, Ho, Ringo Moon-Ho, Miao, Chun Yan and Ho, Andy Hau Yan (2022) Acceptability and feasibility of a pilot randomized controlled trial of Narrative e-Writing Intervention (NeW-I) for parent-caregivers of children with chronic life-threatening illnesses in Singapore. BMC Palliative Care, 21:59. ISSN 1472-684X (Online) (doi:10.1186/s12904-022-00945-0)

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Abstract

Background
Narrative e-Writing Intervention (NeW-I) is a novel psycho-socio-spiritual intervention which aims to bridge gaps in paediatric palliative care by providing anticipatory grief support to parent-caregivers who are looking after their child with a chronic life-threatening illness in Singapore. This is done via a therapist-facilitated smartphone app that focuses on strengths and meaning derived from parents’ caregiving journey. NeW-I is empirically informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by anticipatory grief interventions literature for improving the holistic well-being for parent-caregivers of seriously ill children. NeW-I is implemented in Singapore as an open-label two-armed randomized controlled trial comprising an intervention and control group.

Methods
This study examined the acceptability (via analysis of participants’ post-intervention qualitative feedback and responses to a post-intervention evaluation survey) and feasibility (via records and memos of therapists’ experience of delivering the intervention) of NeW-I among 26 intervention participants drawn from the larger trial.

Results
Framework analysis of participants’ post-intervention feedback revealed four themes, namely: (i) Meaningful opportunity for reflection, (ii) Congruity with parent-caregivers’ needs, (iii) Compatibility of online narrative writing and (iv) Sustainability and enhancement recommendations. The post-intervention evaluation survey showed that participants were overall satisfied with their NeW-I experience with a large number of participants acknowledging that NeW-I had improved their spiritual well-being, hopefulness about the future and perception of social support that was available to them, as well as lessened their feelings of sadness and depression, caregiver burden and fear and anxiety about their child’s illness. The research team found it feasible to deliver the intervention in the current setting.

Conclusion
NeW-I is an innovative e-health tool that could immeasurably value-add to paediatric palliative care services for Asian families in Singapore and around the world.

Item Type:	Article
Uncontrolled Keywords:	Narrative Therapy, Psychotherapy, Paediatric Palliative Care, End-of-Life Care, Randomized Controlled Trial, Cyber-Counselling
Subjects:	R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Faculty / School / Research Centre / Research Group:	Faculty of Education, Health & Human Sciences Faculty of Education, Health & Human Sciences > School of Human Sciences (HUM)
Last Modified:	25 Apr 2023 09:24
URI:	http://gala.gre.ac.uk/id/eprint/41734

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