scholarly journals 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

2019 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Low Xinyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Support Services ◽  
Controlled Trial ◽  
Well Being ◽  
Pediatric Palliative Care ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening Illness ◽  
Life Threatening

Abstract 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.

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

2020 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Xinyi Low ◽  
...  
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Well Being ◽  
Mobile App ◽  
Pediatric Palliative Care ◽  
Writing Intervention ◽  
Open Label ◽  
Web Based ◽  
Randomized Controlled ◽  
Life Threatening

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. CLINICALTRIAL ClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/17561

scholarly journals 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

2019 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Low Xinyi ◽  
...  
Keyword(s):  
Palliative Care ◽  
Family Caregivers ◽  
Controlled Trial ◽  
Well Being ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening Illness ◽  
Spiritual Well Being ◽  
Life Threatening

Abstract Background: Conventionally, psycho-socio-spiritual interventions for parents of children with chronic life-threatening illness begin post child loss. Pre-loss interventions addressing anticipatory grief can improve holistic well-being and grief outcomes among family caregivers of dying patients. Globally, palliative care strives to holistically support patients and their caregivers at the end-of-life. However, inadequacies exist both globally and in Singapore in providing culturally sensitive psycho-socio-spiritual support to parents whose children need pediatric palliative 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. The online NeW-I platform and the relative anonymity it offers to participants is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with emotional expression even during times of loss and separation. Together with four local pediatric palliative care providers, NeW-I is implemented in Singapore as an open-label pilot randomized controlled trial with 72 parents. Potential effectiveness of NeW-I and accessibility and feasibility of implementing and delivering the intervention are assessed. Discussion: NeW-I aspires to improve psycho-socio-spiritual 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 will inform the development of a standardized NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world.

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

10.2196/17561 ◽  
2020 ◽  
Vol 9 (7) ◽  
pp. e17561 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Xinyi Casuarine Low ◽  
...  
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Well Being ◽  
Mobile App ◽  
Pediatric Palliative Care ◽  
Writing Intervention ◽  
Open Label ◽  
Web Based ◽  
Randomized Controlled ◽  
Life Threatening

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

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

2020 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Xinyi Casuarine Low ◽  
...  
Keyword(s):  
Palliative Care ◽  
Controlled Trial ◽  
Well Being ◽  
Mobile App ◽  
Pediatric Palliative Care ◽  
Writing Intervention ◽  
Open Label ◽  
Web Based ◽  
Randomized Controlled ◽  
Life Threatening

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. CLINICALTRIAL ClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382 INTERNATIONAL REGISTERED REPORT DERR1-10.2196/22286

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

10.2196/22286 ◽  
2020 ◽  
Vol 9 (8) ◽  
pp. e22286
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Xinyi Casuarine Low ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Controlled Trial ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening

scholarly journals 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

2019 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Low Xinyi ◽  
...  
Keyword(s):  
Randomized Controlled Trial ◽  
Controlled Trial ◽  
Writing Intervention ◽  
Open Label ◽  
Randomized Controlled ◽  
Life Threatening

Abstract The authors have withdrawn this preprint from Research Square

scholarly journals Reducing caregiver stress with internet-based interventions: a systematic review of open-label and randomized controlled trials

2014 ◽  
Vol 22 (e1) ◽  
pp. e194-e209 ◽  
Author(s):  
Chunling Hu ◽  
Simon Kung ◽  
Teresa A Rummans ◽  
Matthew M Clark ◽  
Maria I Lapid
Keyword(s):  
Systematic Review ◽  
Randomized Trials ◽  
Controlled Trial ◽  
Well Being ◽  
Open Label ◽  
Randomized Controlled ◽  
Ovid Medline ◽  
Caregiver Quality ◽  
High Level ◽  
Review Criteria

Abstract Objective The high level of stress associated with caring for others with medical conditions has been recognized for some time. Reducing caregiver stress can improve caregiver quality of life as well as improve the care they provide to loved ones. This systematic review assesses the effectiveness of internet-based interventions to decrease caregiver stress. Materials and methods A comprehensive literature search of Ovid MEDLINE (1946–2013), Embase (1988–2013), PsycINFO (1987–2013), and CINAHL was conducted using terms related to caregiver and internet-based interventions. Internet-based interventions involving informal caregivers in an open-label or randomized controlled trial setting were included. A pair of raters independently reviewed all published abstracts. Data regarding participants, interventions, and outcomes were extracted and, for randomized trials, methodology quality was also reviewed. Results Eight open-label trials met the review criteria: three showed positive benefit in reducing caregiver stress, four were partially positive (some outcomes positive, others negative), and one was a negative study. Sixteen randomized trials met the review criteria: six showed positive benefit, five were partially positive, and five were negative. There were no clear patterns as to the variables (such as study duration and complexity of intervention) associated with better outcomes, although earlier studies typically had more negative outcomes. Discussion Internet-based interventions were mostly effective in reducing aspects of caregiver stress and improving their well-being. Further studies to assess outcomes for caregivers and their recipients’ health, different technology delivery methods, and the cost of such interventions are needed.

scholarly journals Staying Present to Youth with an Unknown Future

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Susan Poitras
Keyword(s):  
Palliative Care ◽  
Clinical Practice ◽  
Pediatric Palliative Care ◽  
Future Thinking ◽  
Doctoral Study ◽  
Life Threatening Illness ◽  
The Future ◽  
Life Threatening ◽  
Research Findings

The intention of this workshop is to provide an opportunity to explore the various dimensions of clinical practice known to support and enhance coping in adolescents living with a life-threatening illness. The objectives are to: 1) Present recent research findings related to the future thinking activities of adolescents in pediatric palliative care; 2) Acknowledge that these findings stretch us as clinicians to “sit with” and \"create time for\" the youth’s exploration of future in the context of an anticipated shortened life; 3) Discuss several cases and provide experiential activities that can prepare the clinician in ‘being with’ and ‘staying present’ to youth who are exploring their future that remains unknown by virtue of the trajectory of illness.The workshop will be broken down into three parts. In the first 30 minutes the findings from a doctoral study aimed at examining the future thinking of adolescents living with a progressive life-threatening neurodegenerative illness will be presented and discussed. Secondly, consideration will be given to how clinicians can mindfully prepare themselves for supporting adolescents and to consider aspects of the clinical self in our work with this population and finally, through both storytelling and the facilitation of active experiential activities, the presenters will share stories and ideas that have been integrated into existing practices.

Challenges of palliative care for children with cancer in Iran: a review

2019 ◽  
Author(s):  
Maryam Rassouli MD ◽  
Naiire Salmani MD ◽  
Zahra Mandegari MSc ◽  
Atena Dadgari MSc ◽  
Bahare Fallah Tafti MSc ◽  
...  
Keyword(s):  
Palliative Care ◽  
Insurance Coverage ◽  
Home Care Services ◽  
Pediatric Palliative Care ◽  
Children With Cancer ◽  
Care Services ◽  
Life Threatening Illness ◽  
Relieve Pain ◽  
Palliative Care Services ◽  
Life Threatening

Pediatric palliative care is a holistic caring approach for children and families that begins with diagnosis of a life-threatening illness and continues until death; it aimed to relieve pain and other symptoms in physical, mental, social and spiritual aspects. In spite of available evidence concerning optimal outcomes of the provision of palliative care, establishment of a palliative care system for children has hardly been feasible so far due to a number of challenges. Therefore, this review study aimed at identifying the challenges of the provision of pediatric palliative care along with the relevant solutions. The identified challenges were classified into two categories including structure-based challenges (i.e. lack of a clear structure in the health system and classification of services, shortage of specialized staff, insufficient home care services, absence of health care tariffs along with insurance coverage of palliative care services) and process-based challenges (i.e. absence of guidelines, lack of educational programs for family, family attitudes and beliefs, communication barriers, and lack of access to opioids). Thereafter, the solutions for each challenge are provided in accordance with the available literature separately. Given the significance of palliative care for children with cancer and in order to improve the quality of life of the children and the families, it appears necessary that policymakers and managers take account of the challenges as well as the feasibility and the implementation of provided solutions.

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