Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

Toyama, Hiroko; Honda, Akiko

doi:10.1177/2333393616682549

Cited by 16 publications

(27 citation statements)

References 20 publications

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“…The development and evaluation of NeW-I is guided by the Medical Research Council Framework for the Development and Evaluation of Complex Interventions, which is widely recognized in the design and evaluation of complex interventions to improve health outcomes [ 48 , 49 ]. NeW-I is also inspired by the meaning reconstruction model [ 50 ], the narrative approach to anticipatory grief [ 51 ], dignity therapy [ 31 , 32 ], family dignity intervention for holistic end-of-life care [ 33 ], and the findings of a recent investigation on Asian parental bereavement experience of child loss by our research team [ 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial

Ho¹,

Dutta²,

Tan-Ho³

et al. 2020

JMIR Res Protoc

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Background A 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. Objective This 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. Methods The 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. Results Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing. Conclusions 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. Trial Registration ClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382 International Registered Report Identifier (IRRID) DERR1-10.2196/17561

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Section: Introductionmentioning

confidence: 99%

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial

Ho¹,

Dutta²,

Tan-Ho³

et al. 2020

JMIR Res Protoc

View full text Add to dashboard Cite

show abstract

“…The participants showed that they could imagine the experiences of the strong fear, anger, helplessness, despair, worry, desire to keep their autonomy intact, and fear of weighing on their loved ones that characterize such an experience, as already described in the literature [ 29 ]. In particular, the fear of losing one’s autonomy and becoming a burden on one’s family is a trait of particular relevance, to which the study offered specific attention [ 30 , 31 , 32 , 33 , 34 ] because the demand for assisted suicide and euthanasia is often inscribed in this scenario [ 35 , 36 , 37 , 38 ]. Among the factors that participants consider fundamental to avoiding desperation are freedom of choice concerning the end of life and the use of invasive devices.…”

Section: Discussionmentioning

confidence: 99%

“Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives

Testoni

Palazzo

Calamarà

et al. 2021

Behavioral Sciences

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The study presents the results of qualitative research carried out within a death education project dedicated to advance treatment directives (ATDs) in which it was proposed to participants to empathize with people who had received a diagnosis of Amyotrophic Lateral Sclerosis (ALS). The study involved 104 people who discussed and reflected on issues related to the knowledge of having to die, palliative care and ATDs, investigating what choices they would have made if they had received such a diagnosis. Finally, they were asked to write a paper describing their impressions and hypothetical choices. Qualitative analysis has elucidated among fundamental themes. Four thematic areas emerged from the data analysis: (1) ATDs and the family; (2) the importance of reducing pain and suffering; (3) emotions and considerations regarding death, illness and spirituality; and (4) opinions on the DeEd course. It has emerged that some people are unfamiliar with palliative care or the right to self-determination and that addressing these issues helps manage the thought of the future with less terror. The experience of death education has therefore proven to be very positive in dealing with complex and often censored issues, allowing thinking about death in a less distressing way.

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“…The development and evaluation of NeW-I is informed by the medical research council framework for the development and evaluation of complex interventions [39,40], the meaning-reconstruction model [42], the narrative approach to anticipatory grief [43], dignity therapy [27,28], and family dignity intervention for holistic end-of-life care [29], and guided by the findings of a recent investigation on Asian parental bereavement experience of child loss by our research team [10]. The objectives of this It is hypothesized that intervention group participants who successfully complete NeW-I will experience enhanced quality of life, spiritual well-being, sense of hope and perceived social support, and decreased depressive symptoms, subjective caregiver burden and risk of complicated grief as compared to control group participants.…”

Section: Aims Objectives and Hypothesismentioning

confidence: 99%

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

Ho¹,

Dutta

Tan-Ho

et al. 2019

Preprint

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Background: 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 psycho-socio-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 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 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 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 open-label 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-counseling platform, thereby enhancing holistic pediatric palliative care and parental bereavement support services. Findings from this pilot study can inform large-scale implementation and evaluation of NeW-I in Singapore and globally.

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Using Narrative Approach for Anticipatory Grief Among Family Caregivers at Home

Cited by 16 publications

References 20 publications

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial

“Imagine You Have ALS”: Death Education to Prepare for Advance Treatment Directives

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

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