Abstract
BackgroundA novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children.ObjectiveThis study's aim was to provide an accessible platform, NeW-I—which is a strengths- and meaning-focused and therapist-facilitated 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 of children with chronic life-threatening illnesses.MethodsThe NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed.ResultsFunding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing.ConclusionsNeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.Trial RegistrationClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382International Registered Report Identifier (IRRID)DERR1-10.2196/17561
Highlights
BackgroundThere is a global increase in the number of children living with chronic life-threatening illnesses [1,2]
Narrative e-Writing Intervention (NeW-I) aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world
The study was approved by the institutional review board of Nanyang Technological University in 2018
Summary
What are some forms of support that have been helpful for you in providing quality care to your child?. People who have been helpful or supportive in your caregiving journey. What are some things that others could do for you that could further help you in your caregiving journey?. What would a good day for your child look like ? Viding an alternative viewpoint of perceiving the situation This week, we’d love to know a little bit about you. Do feel free to add on anything else about this challenge that you would like us to know! This week, we’d like to know what you find most comforting (e.g. family, relationships, work, hobbies and other activities etc.).
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