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Background: Electronic patient-reported outcome measures (ePROMs) are standardized digital instruments integrated into clinical care to collect subjective data regarding patients' health-related quality of life, functional status, and symptoms. In documenting patient-reported progress, ePROMs can guide treatment decisions and encourage measurement-based care practices. Voxe is a pediatric and user-centered ePROM platform for patients with chronic health conditions., Objective: We aimed to describe the user-centered design approach involving feedback from end users and usability testing of Voxe's platform features to support implementation in a pediatric health care setting., Methods: Purposive sampling was used to recruit patients aged 8-17 years from 2 chronic illness populations in 2 pediatric hospitals in Canada. Patients' health care team members were also purposively recruited. One-on-one iterative testing sessions were conducted digitally by research team members with participants to obtain feedback on the appearance and functionalities of the Voxe platform prototype. Patients and health care providers (HCPs) completed Voxe-related task-based activities. International Organization for Standardization key performance indicators were tracked during HCP task-based activities. HCPs also completed the System Usability Scale. To test platform usability, the think-aloud technique was used by participants during the completion of structured tasks. After completing all task-based activities, patient participants selected 5 words from the Microsoft Desirability Toolkit to describe their overall impression and experience with the Voxe platform. Qualitative data about likes, dislikes, and ease of use were collected through semistructured interviews. Feedback testing sessions were conducted with patients and HCPs until Voxe was acceptable to participating end users, with no further refinements identified. Quantitative and qualitative data analysis were completed using descriptive statistics and content analysis., Results: A total of 49 patients and 38 HCPs were recruited. Patients were positive about Voxe's child-centered design characteristics and notification settings. HCPs rated Voxe as user-friendly and efficient, with the time to complete tasks decreasing over time. HCPs were satisfied with the Voxe platform functionalities and identified the value of Voxe's system notifications, summarized display of ePROM results, and its capacity to integrate with electronic medical records. Patients' and HCPs' high satisfaction rates with the Voxe prototype highlight the importance of being responsive to user suggestions from the inception of eHealth platform developments to ensure their efficient and effective design., Conclusions: This paper describes the user-centered creation and usability testing of Voxe as an ePROM platform for implementation into clinical care for pediatric patients with chronic health conditions. As a patient-facing platform that can be integrated into electronic medical records, Voxe aligns with measurement-based care practices to foster quality patient-centered approaches to care. End users' positive feedback and evaluation of the platform's user-friendliness and efficiency suggest that Voxe represents a valuable and promising solution to systematically integrate patient-related outcome (PRO) data into complex and dynamic clinical health care settings., International Registered Report Identifier (irrid): RR2-10.1136/bmjopen-2021-053119., (©Samantha J Anthony, Sarah J Pol, Enid K Selkirk, Amarens Matthiesen, Robert J Klaassen, Dorin Manase, Amanda Silva, Melanie Barwick, Jennifer N Stinson, Alameen Damer, Mowa Ayibiowu, Selina X Dong, Stephan Oreskovich, Michael Brudno. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 19.09.2024.)

Healthcare workers are at risk of adverse mental health outcomes due to occupational stress. Many organizations introduced initiatives to proactively support staff's psychological well-being in the face of the COVID-19 pandemic. One example is the STEADY wellness program, which was implemented in a large trauma centre in Toronto, Canada. Program implementors engaged teams in peer support sessions, psychoeducation workshops, critical incident stress debriefing, and community-building initiatives. As part of a project designed to illuminate the experiences of STEADY program implementors, this article describes recommendations for future hospital wellness programs. Participants described the importance of having the hospital and its leaders engage in supporting staff's psychological well-being. They recommended ways of doing so (e.g., incorporating conversations about wellness in staff onboarding and routine meetings), along with ways to increase program uptake and sustainability (e.g., using technology to increase accessibility). Results may be useful in future efforts to bolster hospital wellness programming., Competing Interests: Declaration of conflicting interestsThe author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Background: Despite heart and lung transplantation being life-saving therapies for children and adolescents, little research has focused on recipients' lived experience post-transplant. This study captures the subjective experiences of adolescent thoracic transplant recipients, providing insight into the impact of life changes following transplantation in this population., Methods: A grounded theory approach guided an iterative process of data collection and data analysis. Adolescent heart and lung transplant recipients were recruited from a large Canadian pediatric teaching hospital to participate in one-on-one semi-structured interviews. Analysis using line-by-line coding and constant comparison methods facilitated reflection and agreement on categories and emergent themes., Results: A total of 27 heart and 5 lung transplant recipients (66% female) participated at a median age of 15.9 years and a median time post-transplant of 2.7 years. Participant narratives illuminated three themes describing (1) personal growth - an awareness of personal strengths and coping abilities, (2) relationship growth - a greater appreciation for family and friends, and (3) introspective growth - a developing life philosophy. Findings suggest that adolescents experience an emergent 'transplanted self', positioning thoracic transplantation as a potential catalyst for positive growth and personal change., Conclusions: The study findings describe pediatric thoracic transplantation as potentially transformative in nature and sheds light on the application of post-traumatic growth theory. Practitioners and researchers are encouraged to acknowledge the possibility of growth, transformation, and positive change that may be possible within the adolescent thoracic transplant experience and leverage such strengths in clinical care., (Copyright © 2022 The Authors. Published by Elsevier Inc. All rights reserved.)

Purpose: Trust in the deceased organ donation process relies on the expectation that the diagnosis of death by neurologic criteria (DNC) is accurate and reliable. The objective of this study was to assess the perceptions and approaches to DNC diagnosis among Canadian intensivists., Methods: We conducted a self-administered, online, cross-sectional survey of Canadian intensivists. Our sampling frame included all intensivists practicing in Canadian institutions. Results are reported using descriptive statistics., Results: Among 550 identified intensivists, 249 (45%) completed the survey. Respondents indicated they would be comfortable diagnosing DNC based on clinical criteria alone in cases where there is movement in response to stimulation (119/248; 48%); inability to evaluate upper/lower extremity responses (84/249; 34%); spontaneous peripheral movement (76/249; 31%); inability to evaluate both oculocephalic and oculo-caloric reflexes (40/249; 16%); presence of high cervical spinal cord injury (40/249; 16%); and within 24 hr of hypoxemic-ischemic brain injury (38/247; 15%). Most respondents agreed that an ancillary test should always be conducted when a complete clinical evaluation is impossible (225/241; 93%); when there is possibility of a residual sedative effect (216/242; 89%); when the mechanism for brain injury is unclear (172/241; 71%); and if isolated brainstem injury is suspected (142/242; 59%). Sixty-six percent (158/241) believed that ancillary tests are sensitive and 55% (132/241) that they are specific for DNC. Respondents considered the following ancillary tests useful for DNC: four-vessel conventional angiography (211/241; 88%), nuclear imaging (179/240; 75%), computed tomography (CT) angiography (156/240; 65%), and CT perfusion (134/240; 56%)., Conclusion: There is variability in perceptions and approaches to DNC diagnosis among Canadian intensivists, and some practices are inconsistent with national recommendations., (© 2021. Canadian Anesthesiologists' Society.)

Purpose: We surveyed Canadian critical care physicians who may care for patients who are potential organ donors to understand their attitudes and knowledge of legislation governing the deceased organ donation system., Methods: We used a web-based, self-administered survey that included questions related to opt-out consent and mandatory referral legislation. Potential participants were identified through membership lists of professional societies and manual searches. We designed our survey using standardized methods and administered it in February and March 2018., Results: Fifty percent (263/529) of potential participants completed the questionnaire. A majority (61%; 144/235) supported a change towards an opt-out consent model, and 77% (181/235) stated they believe it would increase donation rates. Asked if opt-out consent would change their practices, 71% (166/235) stated an opt-out model would not change how or if they approach families to discuss donation. Fifty-six percent (139/249) supported mandatory referral laws, while only 42% (93/219) of those working in provinces with mandatory referral correctly stated that such laws exist in their province. Respondents gave variable responses on who should be accountable when patients are not referred, and 16% (40/249) believed no one should be held accountable., Conclusions: While a majority of critical care physicians supported opt-out consent and mandatory referral, many were neutral or against it. Many were unaware of existing laws and had variable opinions on how to ensure accountability. Efforts to increase understanding of how legislative models influence practice are required for any law to achieve its desired effect.

Purpose: Intensive care physicians play an important role in the identification and referral of potential organ donors in Canada. Nevertheless, little is known about intensivists' attitudes or behaviours in situations where families override previously expressed consent to donate; nor why physicians elect not to refer patients who are potential donors to provincial organ donation organizations (physician non-referral)., Methods: We integrated questions regarding family override and physician non-referral into an online, self-administered survey of Canadian intensivists. We report results descriptively., Results: Fifty percent of targeted respondents (n = 550) participated. Fifty-five percent reported having witnessed family override situations and 44% reported having personally not referred patients who were potential donors. Fifty-six percent of respondents stated they would not pursue donation in the face of family override; 2% stated they would continue with the donation process. Fear of loss of trust in the donation system (81%) and obligation to respect the grief and desires of surrogate decision makers (71%) were frequently reported reasons to respect family override requests. Respondents who chose not to refer patients often did so based on organ dysfunction they assumed would preclude donation (59%), or a perception that the family was too distressed to consider donation (42%). No respondents reported that personally held beliefs against organ donation influenced their decision., Conclusion: Physicians caring for patients who are potential organ donors commonly encounter both family override and physician non-referral situations. Knowledge translation of optimal practices in identification and referral could help ensure that physician practices align with legal requirements and practice recommendations.

Online crowdfunding platforms such as GoFundMe are used to raise funds for health-related expenses associated with medical conditions such as organ transplantation. By investigating crowdfunding in Canadian organ transplantation, this study aimed to increase understanding of the motivations and outcomes of organ transplantation crowdfunding. Canadian liver and kidney transplantation campaigns posted to GoFundMe between May 30 & 31 2018 were identified and after exclusion, 258 kidney and 171 liver campaigns were included in study. These campaigns were coded for: worthiness of the campaign recipient, requested financial and non-monetary contributions, how monetary donations would be spent, and comments on the Canadian health system, among others. Results suggest Canadian organ donors, transplant candidates, recipients, and their families and caregivers experience significant financial difficulties not addressed by the public health system. Living and medication costs, transportation and relocation expenses, and income loss were the expenses most commonly highlighted by campaigners. Liver campaigns raised nearly half their goal while kidney campaigns received 11.5% of their requested amount. Findings highlight disease burden and the use of crowdfunding as a response to the extraordinary costs associated with organ transplantation. Although crowdfunding reduces some financial burden, it does not do so equitably and raises ethical concerns., Competing Interests: The authors have declared that no competing interests exist.

Objective: There is a growing need to assess the long-term quality of life (QOL) of pediatric oncology patients since many children now survive their disease. This paper highlights the subjective perspectives of pediatric cancer patients and specifically explores how experiencing cancer at a young age impacts adolescents in the areas of social functioning, peer relationships, and QOL. The findings emerged from a qualitative research study that explored how pediatric oncology patients ascribe meaning to their illness., Methods: Study participants were recruited from four Canadian academic pediatric hospitals. In this study, we used an interpretative description approach. Semistructured interviews were completed, transcribed verbatim, and coded through the method of constant comparison., Results: A total of 37 children and adolescents (n = 19 female; 51%) participated. The majority of participants were diagnosed with leukemia (n = 16; 43%) or lymphoma (n = 9; 24%). Sixty-two percent of participants were adolescents between the ages of 13 and 18 years (n = 23). Data illustrated a unique adolescent experience, which has been reported as a subset of the original population. Adolescent participants noted an accelerated experience of maturation, which invited reflections of gratitude as well as feelings of isolation and disconnect from peers. Participants were saddened to have "missed out" on normative parts of childhood., Conclusion: Findings highlighted experiences of accelerated maturity that prompted adverse social outcomes for adolescent participants, which impacted their QOL. Future research is needed to explore the intersection of accelerated maturity attributed to illness, social functioning, and QOL. Peer support through technology engagement is suggested for this population., (© 2019 John Wiley & Sons, Ltd.)

Introduction: Evolving methods of communication have increased public appeals for living organ and hematopoietic stem cell donations from strangers, giving public solicitations more visibility. Within the academic literature, perspectives have been divisive, reflecting ethical justifications for and against appeals for living unrelated donors. Transplant programs and clinicians face a variety of ethical dilemmas when patients and their solicited donors present to the hospital., Objective: A scoping review methodology was designed to (1) explore the academic literature and (2) summarize and disseminate key research findings., Methods: We used the Arksey & O'Malley framework for conducting and reporting scoping reviews and to review the prominent ethical arguments, counterarguments, and policy implications in the literature. From 4616 articles identified through MEDLINE, EMBASE, PsycInfo, and CINAHL, we screened titles and abstracts to assess eligibility for full-text review., Results: We retrieved 280 full texts, extracted data from 61, and coded and analyzed 41 papers. Of these, 36 were from or based in the US context. Two articles originated from Canada. Three articles addressed public solicitations of hematopoietic stem cell donation. We mapped themes under 3 major headings related to public solicitations of living unrelated donors for organs and hematopoietic stem cells: (1) interpretations and modes, (2) ethical arguments for and against, and (3) policy implications and suggestions to address challenges for clinical practice., Discussion: The academic literature contains divisive perspectives of public solicitations for organ and hematopoietic stem cell donation, each of which deserves further reflection for implications for policy and practice.