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 (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 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 Investigation Of Spiritual Well-Being Palliative Care Of Patients

2019 ◽  
Vol 9 (7) ◽  
pp. 496-513 ◽  
Author(s):  
Fadime Çinar*, Turgay Sirin
Keyword(s):  
Palliative Care ◽  
Personal Information ◽  
Healing Process ◽  
Well Being ◽  
Term Treatment ◽  
Long Term Treatment ◽  
Spiritual Well Being ◽  
Life Threatening ◽  
The Difference ◽  
The Individual

Background: One of the indispensable aspects of the philosophy of holistic care,and negative situations such as life-threatening illness, spiritual well-being, which isdefined as the search for a relationship with a divine soul, is a requirement that mustbe met in order to maintain the existence of the individual. The patient's need forsocial and spiritual well-being increases even more in cases of long-term treatment,such as cancer, that reduce the quality of life. Determining and meeting the spiritualneeds of the individual in the difficult times of the crisis can be realized bydetermining the spiritual well-being levels of the individuals and by providing theindividual spiritual care. This study was conducted to determine the level of thespiritual well-being of palliative care patients diagnosed with cancer. Methods: Thisis a descriptive study. The population of the study consisted of 124 patientsdiagnosed with cancer who were hospitalized in the palliative unit between Januaryand August 2018 and were treated in two state hospitals operating on the Europeanside of Istanbul. The sample consisted of 111 people with voluntary participationand communication. Personal Information Form and Spiritual Well-being Scalewere used to collect data. Data were evaluated by one-way analysis of variance (one-way anova) and significance (t-test) of the difference between the two means.Results: The total score averages from the spiritual good scale of individualsparticipating in the Study were determined to be good with x = 4,15. In terms ofthe level of education of Scale scores, only "Anomi" is significantly differentiatedbetween groups of age, with a total score of the scale, In the sub-dimension oftranscendity and the subdimension of "Harmony with Nature" according to thevariable metastasis (p > 0.05). Conclusion: Spiritual Well-being has a positive effecton the healing process of individuals with impaired health. It helps individuals whohave a crisis in life threatening diseases such as Cancer to cope with this crisis and toprovide spiritual well-being in the sense of life. In This process, spiritual careinitiatives by healthcare professionals can be transformed into a part of the healingprocess and the spiritual goodness of the individual can be increased. Furtherresearch in This area is projected to contribute to the richening of the relevantliterature in Turkey.Key words: Spiritual, spiritual well-being, palliative care, palliative care unit

The relation between the experience of time and psychological distress in patients with hematological malignancies

2006 ◽  
Vol 4 (4) ◽  
pp. 357-363 ◽  
Author(s):  
MARC WITTMANN ◽  
TANJA VOLLMER ◽  
CLAUDIA SCHWEIGER ◽  
WOLFGANG HIDDEMANN
Keyword(s):  
Quality Of Life ◽  
Psychological Distress ◽  
Hematological Malignancies ◽  
Well Being ◽  
Anxiety And Depression ◽  
Life Threatening Illness ◽  
Experience Of Time ◽  
Spiritual Well Being ◽  
Life Threatening

Objective: The experience of time is strongly related to our momentary mood states. Patients with a life-threatening illness experience an extreme change in mood and suffer from psychological distress that can develop into clinically relevant psychiatric disorders, like anxiety and depression. The aim of this study was to investigate the associations among the subjective perception of time, psychological distress, and quality of life in patients with hematological malignancies.Methods: Eighty-eight inpatients with hematological malignancies rated how fast time passes subjectively on a visual analog scale and prospectively estimated a time span of 13 min. The Hospital Anxiety and Depression Scale (HADS) self-report measures of health-related quality of life (FACT-G) and spiritual well-being (FACIT-Sp) were employed to assess psychological distress and quality of life.Results: Those patients who reported a lower quality of life, less spiritual well-being, and more anxiety experienced a slower passage of subjective time and overestimated the 13-min time interval.Significance of results: Our interpretation of the results is that patients with a life-threatening illness who show symptoms of psychological distress draw attention away from meaningful thoughts and actions and, thus, experience time as passing more slowly. An altered sense of time can be a sign of mental suffering, which should be addressed within psycho-oncological interventions. As this is the first study to demonstrate this relation in cancer patients, further research is needed to investigate the experience of time and its relation to meaning as an issue in clinical diagnostics.

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