scholarly journals Using Normalization Process Theory to Evaluate Providing Pediatric Palliative Care at End-of-Life as Web-Based Training Intervention for Nurses: Study Protocol for a Randomized Controlled Trial (Preprint)

10.2196/23783 ◽  
2020 ◽  
Author(s):  
Moustafa Ali Al-Shammari ◽  
Amean Yasir ◽  
Nuhad Aldoori ◽  
Hussein Mohammad
2020 ◽  
Author(s):  
Moustafa Ali Al-Shammari ◽  
Amean Yasir ◽  
Nuhad Aldoori ◽  
Hussein Mohammad

BACKGROUND Palliative care is a rather concept that new in Iraq, there is no training intended for both health care specialists and the overall public. The lack of education and training programs is the most important barrier. Intermediate training is needed for individuals regularly at work with patients with life-threatening diseases. The End-of-Life Nursing Education Consortium-Pediatric Palliative Care, meant for nurses with an interest in provide care for those children with a life-limiting disease or in the event of accidents/and unexpected passing. OBJECTIVE The present paper is intended to evaluate the effect of a web-based course using the Normalization Process Theory, which focuses attention on how complex interventions become routinely embedded in practice and training of the sample academic nurses’ staff in the application of the pediatric palliative care in routine daily practice. It hypothesizes that nurses’ specialists will help after passing the training in providing palliative care for the pediatric population. METHODS In a Multicenter, parallel, Pragmatic trial, five health care settings spread over a single city of Babylon Province. Participants will be recruited and stratified to two strata (critical care units and non-critical care units). In the experimental condition, the (n = 86 academic nursing staff) will be trained in the application of the pediatric palliative care, for two weeks as web-based training course powered by Relais platform through inviting the nurses to participate via email, or instant messaging instruct WhatsApp, telegram, Viber account of participants to provide End of life care in addition to usual care to children and adolescents with life-limiting conditions. In the control condition (n=86), continue usual care. The program's effectiveness will be assessed at the level of nurses only. The statistical analyses will compare the baseline assessment for each participant (before the intervention) with a post-intervention assessment (after passing the training course). Moreover, a continuation assessment will occur three months after the course end. As around numerous unidentified factors influencing the effect of the course training, a progress evaluation to evaluate selection sample, application, and intervention value besides difficulties and organizers to implementation will as well be present comprised in the study analysis. The staff of nursing might not be the intervention blinded, nonetheless were blinded for the results. RESULTS The study trial recruitment opened in July 2020. The first outcomes are predicted to be available in December 2020. CONCLUSIONS Study object to determine the training effect of the academic nurse staff of multicenter departments\ units with a training course in the application of new pediatric palliative care. The study strengths are the usual practice setting, the staff training, the readiness of staff to participate in the study, and the random allocation to the intervention. Possible drawbacks may drop out because of staff of nursing may well transfer to another department throughout the study period. CLINICALTRIAL Trial Registration: NCT04461561


2020 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Casuarine Xinyi Low ◽  
...  

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


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 ◽  
...  

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


2020 ◽  
Author(s):  
Andy Hau Yan Ho ◽  
Oindrila Dutta ◽  
Geraldine Tan-Ho ◽  
Toh Hsiang Benny Tan ◽  
Xinyi Casuarine Low ◽  
...  

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


2019 ◽  
Author(s):  
Jan van Lieshout ◽  
Joyca Lacroix ◽  
Aart van Halteren ◽  
Martina Teichert

BACKGROUND Growing numbers of people use medication for chronic conditions; non-adherence is common, leading to poor disease control. A newly developed web-based tool to identify an increased risk for non-adherence with related potential individual barriers might facilitate tailored interventions and improve adherence. OBJECTIVE To assess the effectiveness of the newly developed tool to improve medication adherence. METHODS A cluster randomized controlled trial assessed the effectiveness of this adherence tool in patients initiating cardiovascular or oral blood glucose lowering medication. Participants were included in community pharmacies. They completed an online questionnaire comprising an assessments of their risk for medication non-adherence and subsequently of barriers to adherence. In pharmacies belonging to the intervention group, individual barriers displayed in a graphical profile on a tablet were discussed by pharmacists and patients at high non-adherence risk in face to face meetings and shared with their general practitioners and practice nurses. Tailored interventions were initiated by the healthcare providers. Barriers of control patients were not presented or discussed and these patients received usual care. The primary outcome was the difference in medication adherence at 8 months follow-up between patients with an increased non-adherence risk from intervention and control group, calculated from dispensing data. RESULTS Data from 492 participants in 15 community pharmacies were available for analyses (intervention 253, 7 pharmacies; control 239, 8 pharmacies). The intervention had no effect on medication adherence (-0.01; 95%CI -0.59 – 0.57; P= .96), neither in the post hoc per protocol analysis (0.19; 95%CI -0.50 – 0.89; P=.58). CONCLUSIONS This study showed no effectiveness of a risk stratification and tailored intervention addressing personal barriers for medication adherence. Various potential explanations for lack of effect were identified. These explanations relate for instance to high medication adherence in the control group, study power and fidelity. Process evaluation should elicit possible improvements and inform the redesign of intervention and implementation. CLINICALTRIAL The Netherlands National Trial Register: NTR5186. Date: May 18, 2015 (http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5186)


2021 ◽  
Author(s):  
Erin K. Tagai ◽  
Suzanne M. Miller ◽  
Shawna V. Hudson ◽  
Michael A. Diefenbach ◽  
Elizabeth Handorf ◽  
...  

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