Quality of life and psychosocial outcomes of adults who were pediatric solid organ transplant recipients: A systematic review.

BACKGROUND: The number of pediatric SOT recipients surviving into adulthood is increasing. Thus, understanding their psychosocial and QoL outcomes is important. We conducted a systematic review to collate existing literature examining QoL outcomes (physical functioning, psychological functioning, social functioning), as well as risk and protective factors associated with QoL, among adults who underwent SOT during childhood. METHODS: A systematic search of five databases, from inception to January 6, 2021, was conducted to identify articles that reported on QoL outcomes for adults (≥18-year of age) who received a SOT during childhood (<19-year of age). RESULTS: Twenty-five articles met inclusion criteria. Studies examined QoL across a range of SOT populations (liver, kidney, heart). QoL and psychosocial outcomes were variable; however, the majority of studies indicated QoL in this population to be similar to the general population, or at least similar to other chronic illness groups, with the exception of physical and social functioning. Factors related to a more optimal medical course, younger age at transplant and follow-up, and positive psychosocial functioning, were found to be predictive of better QoL outcomes. CONCLUSIONS: While several studies indicated QoL to be similar to the general population, the literature is limited in both quantity and quality. No study employed prospective, longitudinal methodologies to systematically evaluate QoL over time and few studies utilized normative-based measures of QoL. Furthermore, several SOT groups were under-represented in the literature (e.g., lung, intestine, multi-visceral). Nonetheless, findings have implications for intervention and clinical decision-making.

Return to school and mask-wearing in class during the COVID-19 pandemic: Student perspectives from a school simulation study.

Objectives: This study examined children's perspectives about returning to in-person school following lockdown due to the pandemic and about mask-wearing in class, as well as the mental health of children and parents during the pandemic. Methods: This cross-sectional study was part of a 2-day school simulation exercise that randomized students to different masking recommendations. Parent-report of mental health and post-simulation child-report of COVID-19-related anxiety and mask-wearing were analyzed using descriptive and multiple regression analyses. Semi-structured focus groups were conducted with older students to supplement questionnaire data. Results: Of 190 students in this study, 31% were in grade 4 or lower 95% looked forward to returning to in-person school. Greater child anxiety about COVID-19 was predicted by increased parent/caregiver anxiety (ß=0.67; P<0.001), and lower parental educational attainment (ß=1.86; P<0.002). Older students were more likely than younger students to report that mask-wearing interfered with their abilities to interact with peers (χ2(1)=31.16; P<0.001) and understand the teacher (χ2(1)=13.97; P<0.001). Students in the group that did not require masks were more likely than students in the masking group to report worries about contracting COVID-19 at school (χ2(1)=10.07; P<0.05), and anticipated difficulty wearing a mask (χ2(1)=18.95; P<0.001). Conclusions: For children anxious about COVID-19, parental anxiety and education about COVID-19 may be targets for intervention. Future research should examine the impact of prolonged implementation of public health mitigation strategies in school on academic achievement and children's mental health.

Patient-reported outcome measures in pediatric solid organ transplantation: Exploring stakeholder perspectives on clinical implementation through qualitative description.

PURPOSE: Patient-reported outcome measures (PROMs) are standardized instruments used to collect data about the subjective assessment of medical care from the patient perspective. Implementing PROMs within pediatric clinical settings has gained increasing importance as health services prioritize patient-centred pediatric care. This study explores the perspectives of pediatric solid organ transplant patients, caregivers, and healthcare practitioners (HCPs) on implementing PROMs into clinical practice. METHODS: Qualitative description methods were used to elicit stakeholder perspectives. Semi-structured interviews were conducted across five Canadian transplant centres. Purposive sampling was used to obtain maximum variation across age, gender, and transplant program for all participants, as well as discipline for HCPs. RESULTS: The study included a total of 63 participants [patients (n = 20), caregivers (n = 22) and HCPs (n = 21)]. Nearly all participants endorsed the implementation of PROMs to enhance pediatric transplant clinical care. Three primary roles for PROMs emerged: (1) to bring a transplant patient's overall well-being into the clinical care conversation; (2) to improve patient communication and engagement; and, (3) to inform the practice of clinical pediatric transplant care. Insights for effective implementation included completing electronic PROMs remotely and prior to clinical appointments by patients who are eight to 10 years of age or older. CONCLUSIONS: This study contributes to current research that supports the use of PROMs in clinical pediatric care and guides their effective implementation into practice. Future directions include the development, usability testing, and evaluation of a proposed electronic PROM platform that will inform future research initiatives.

Family veto in organ donation: the experiences of Organ and Tissue Donation Coordinators in Ontario.

PURPOSE: In Ontario, an individual's registered wish for organ donation is legally valid consent following death. Family veto occurs when the deceased donor's substitute decision-maker (SDM) overrides this consent to donate, evoking a legal and ethical conflict. The objective of this study was to examine the experiences of Organ and Tissue Donation Coordinators (OTDCs) working with SDMs who vetoed a deceased donor's consent for organ donation. METHODS: Qualitative focus groups were conducted with ten OTDCs in Ontario, Canada who reported experience with family veto. An interpretative phenomenological approach informed data analysis. Themes emerged through team consensus and were further refined through collaborative and reflexive engagement. RESULTS: Four themes emerged regarding family veto: 1) the significance of the OTDC role, 2) emotional distress and the "understandable" family veto, 3) barriers contributing to family veto, and 4) strategies towards a culture of organ donation. Findings highlighted the importance of patient advocacy in the OTDC role, while revealing the emotional distress of experiencing family veto. OTDCs identified timing and healthcare providers' perceived ambivalence toward organ donation as critical barriers to family authorization. Value-positive language, role reframing, and increased education were offered as strategies to address these barriers and reduce family veto. CONCLUSION: This study highlights important considerations about organ donation authorization processes in Ontario. Findings support practice changes towards reducing family veto and further research nationally. Collaborations with key stakeholders are warranted to align healthcare practices, donation policies, and education initiatives towards a shared goal of increasing organ donation.

RéSUMé: OBJECTIF: En Ontario, le souhait documenté et enregistré d'une personne de faire un don d'organes constitue un consentement valable d'un point de vue légal après sa mort. Le terme de veto familial est utilisé pour décrire une situation dans laquelle la personne habilitée à décider au nom du donneur décédé refuse ce consentement au don, provoquant un conflit juridique et éthique. L'objectif de cette étude était d'examiner les expériences des coordonnateurs en don d'organes et de tissus (CDOT) travaillant avec les personnes habilitées à décider au nom d'autrui ayant posé leur veto au consentement d'un donneur décédé pour le don d'organes. MéTHODE: Des groupes de discussion qualitatifs ont été menés auprès de dix CDOT de l'Ontario, Canada, qui ont fait état de leurs expériences de veto familial. Une approche phénoménologique interprétative a éclairé l'analyse des données. Des thèmes sont ressortis du consensus en équipe et ont été approfondis grâce à un engagement collaboratif et réflexif. RéSULTATS: Quatre thèmes entourant le veto familial ont émergé : 1) l'importance du rôle du CDOT, 2) la détresse émotionnelle et le veto familial « compréhensible ¼, 3) les obstacles contribuant au veto familial, et 4) les stratégies pour favoriser une culture de don d'organes. Les résultats ont souligné l'importance des stratégies de défense des droits des patients dans le rôle du CDOT tout en révélant la détresse émotionnelle liée à un veto familial. Les CDOT ont identifié le moment choisi et l'ambivalence perçue des fournisseurs de soins de santé envers le don d'organes comme des obstacles cruciaux à l'autorisation familiale. Un langage positif en matière de valeur, un recadrage des fonctions et une augmentation de la formation sont quelques-unes des stratégies proposées pour éliminer ces obstacles et réduire les cas de veto familial. CONCLUSION: Cette étude met en lumière d'importantes considérations concernant les processus d'autorisation du don d'organes en Ontario. Les résultats appuient les changements apportés aux pratiques visant à réduire les cas de veto familial et à encourager les recherches à l'échelle nationale. Des collaborations avec les principaux intervenants sont nécessaires afin d'harmoniser les pratiques de soins de santé, les politiques de dons et les initiatives d'éducation en vue d'atteindre l'objectif commun d'augmenter les dons d'organes.

"Weighing the Pros and Cons of Everything": A Qualitative Descriptive Study Exploring Perspectives About Living Donor Kidney Transplantation From Parents of Chinese Canadian Pediatric Patients With Chronic Kidney Disease.

Background: As of 2021, more than 6000 children and youth in Canada were living with end-stage kidney disease (ESKD), for which kidney transplantation is considered the preferred treatment by health professionals. Research shows that living donor kidney transplantation (LDKT) has superior allograft and recipient survival compared to deceased donor kidney transplantation (DDKT). However, in a pediatric setting, the choice of LDKT or DDKT is a summative consideration of factors weighed carefully by the patient's family, health care team, and patient. Decision-making surrounding transplantation may be more complex for racial and ethnic minorities as culturally specific values and beliefs are interwoven within dominant understandings and concepts of health and accepted models of health care. For example, Chinese Canadians have an increased risk of ESKD, yet reduced access to LDKT compared to White patients, despite being the largest visible minority population in Canada. Objective: The objective of this qualitative study is to deepen our understandings of the decision-making process surrounding DDKT versus LDKT among parents of Chinese Canadian pediatric patients with chronic kidney disease (CKD). Design: Qualitative descriptive study design. Setting: The Nephrology Program at The Hospital for Sick Children in Toronto, Canada. Participants: Caregivers of Chinese Canadian patients with CKD, 18 years of age or older, and who spoke English, Cantonese, or Mandarin. Methods: One-on-one, semistructured interviews were conducted virtually, by a member of the research team and were audio-recorded and transcribed verbatim. Thematic analysis was used to explore participants' shared experience. Results: Seven interviews were conducted with 6 mothers and 1 father of 6 Chinese Canadian pediatric patients with CKD: 4 patients had undergone a kidney transplant, and 2 were not yet listed for transplant. Analysis of data highlighted that cultural influences affected whether parents shared with others about their child's illness and experience. The cultural understanding that it is inappropriate to burden others contributed to the creation of an isolating experience for participants. Cultural influences also impacted whether parents asked others to be a living donor as participants articulated this would place a physical burden on the living donor (e.g., potential risk to their health) and an emotional burden on the participant as they would be indebted to a willing donor. Ultimately, parents' decision to choose DDKT or LDKT for their patient-child was a result of evaluating both options carefully and within an understanding that the ideal treatment choice reflected what was best for all family members. Limitations: Findings reflect experiences of a small sample from a single recruitment site which may limit transferability. Conclusions: Parents in this study felt that they had access to the necessary evidence-based information to make an informed decision about the choice of DDKT versus LDKT for their child. Participant narratives described feeling isolated within cultural communities of family and friends and participants' suggestion of benefiting from increased support may guide future research directions. Practitioners can offer direct and indirect support to families, with recognition of the importance of cultural values and family-centered care on decision-making within families. Opportunities are needed for accessible, virtual social support platforms to increase parental feelings of culturally mediated peer support from parents who share similar experiences.

Contexte: En 2021, plus de 6000 enfants et jeunes au Canada vivaient avec une insuffisance rénale terminale (IRT), une affection pour laquelle la transplantation rénale est considérée comme le traitement préférentiel par les professionnels de la santé. La recherche montre que la transplantation d'un rein de donneur vivant (TRDV) présente des taux de survie du greffon et du receveur supérieurs à ceux de la transplantation d'un rein de donneur décédé (TRDD). En contexte pédiatrique, le choix entre la TRDV et la TRDD fait l'objet d'une évaluation sommative de facteurs soigneusement pesés par le patient, sa famille et l'équipe de soins. La prise de décision entourant la transplantation peut s'avérer encore plus complexe pour les personnes issues des minorités raciales et ethniques, car des valeurs et croyances spécifiques à la culture sont imbriquées dans les conceptions et concepts dominants de la santé et les modèles de soins acceptés. Les Canadiens d'origine chinoise, par exemple, présentent un risque accru d'IRT, mais leur accès à la TRDV est réduit par rapport aux patients d'origine caucasienne, bien qu'ils constituent la plus importante minorité visible dans la population Canadienne. Objectif: L'objectif de cette étude qualitative est d'approfondir notre compréhension du processus décisionnel entourant le choix entre la TRDD et la TRDV chez les parents de patients pédiatriques d'origine chinoise atteints d'insuffisance rénale chronique (IRC). Conception: Étude qualitative et descriptive. Cadre: Le program de néphrologie de l'Hospital for Sick Children de Toronto (Canada). Sujets: Des adultes proches aidants de patients Canadiens d'origine chinoise atteints d'IRC et parlant anglais, cantonais ou mandarin. Méthodologie: Des entrevues individuelles semi-structurées ont été menées en mode virtuel par un membre de l'équipe de recherche; les entrevues ont été enregistrées (audio) et transcrites textuellement. L'analyze thématique a été utilisée pour explorer l'expérience commune des participants. Résultats: Sept entrevues ont été menées auprès des parents (6 mères et un père) de 6 patients pédiatriques Canadiens d'origine chinoise atteints d'IRC: quatre avaient subi une greffe rénale, les deux autres n'étaient pas encore inscrits sur la liste pour une transplantation. L'analyze des données a révélé que les influences culturelles affectaient la façon dont les parents parlent de la maladie et de l'expérience de leur enfant avec d'autres personnes. La conception d'origine culturelle selon laquelle il n'est pas approprié d'accabler les autres a contribué à créer de l'isolement chez les participants. Les influences culturelles ont également interféré dans le fait de demander ou non à d'autres personnes d'être donneurs vivants; les participants ont expliqué que le don vivant imposait un fardeau physique au donneur vivant (p. ex., un risque pour sa santé) et un fardeau émotionnel au participant, car ceux-ci seraient redevables au donneur consentant. La décision des parents de choisir la TRDD ou la TRDV pour leur enfant aura finalement été le résultat d'une évaluation minutieuse des deux options, avec la perspective que le choix de traitement idéal reflétait ce qui était le mieux pour tous les membres de la famille. Limites: Ces résultats reflètent les expériences d'un faible échantillon de sujets provenant d'un seul centre, ce qui peut limiter la transférabilité. Conclusion: Les parents interrogés pour cette étude estimaient avoir eu accès aux informations factuelles nécessaires pour prendre une décision éclairée dans leur choix entre la TRDD et la TRDV pour leur enfant. Les récits des participants ont décrit leur sentiment d'isolement au sein des communautés culturelles de la famille et des amis; la suggestion des participants de bénéficier d'un soutien accru pourrait guider les orientations futures de la recherche. Les praticiens peuvent offrir un soutien direct et indirect aux familles en reconnaissant l'importance des valeurs culturelles et des soins centrés sur la famille dans la prise de décisions par les familles. Il est nécessaire de créer des plateformes de soutien social virtuelles et accessibles, afin que les parents aient le sentiment de bénéficier davantage du soutien culturel d'autres parents qui partagent des expériences similaires.

Use of Photovoice to Explore Pediatric Patients with Hypertrophic Cardiomyopathy and their Parents' Perceptions of a Heart-Healthy Lifestyle.

Background Heart-healthy lifestyles promote lifelong cardiovascular health. However, patients with hypertrophic cardiomyopathy are often advised to avoid strenuous exercise because of the risk of sudden cardiac death. Given these restrictions, this study explored youth and parent perceptions of a heart-healthy lifestyle and the barriers and facilitators to this lifestyle. Methods and Results Youth and parents were purposefully recruited at 2 Canadian hospitals for this photovoice project. Participants were given cameras and took pictures of everyday heart-healthy or heart-unhealthy choices. Photos were discussed during one-on-one qualitative interviews with youth and parents separately to understand the photos' meaning and significance. Inductive descriptive thematic analysis was employed. A total of 16 youth (median age, 14.4 years [range, 10.5-17.7 years]; 63% boys) and 16 parents (100% women) participated. A total of 15 youth were activity restricted. Data analysis revealed 7 categories organized into perceptions of healthy living (health is holistic and individualized) and factors influencing engagement in healthy living (self-awareness, ownership and autonomy, feeling restricted and peer pressure, support from parents, and support from the cardiologist). Participants had a complex understanding of health and discussed the importance of physical, mental, and social well-being. Youth used self-awareness and taking responsibility as facilitators of healthy living. Healthy living was shaped by peers, parent role-modeling, and cardiologist recommendations. Conclusions This study depicts the realities for youth with hypertrophic cardiomyopathy and can be used to inform the development of responsive interventions. Holistic, patient-specific interventions may be more successful, and strategies such as shared decision making may be important to promote self-awareness and autonomy.

Impact of COVID-19 Public Health Protocols on Teachers Instructing Children and Adolescents During an In-Person Simulation.

Objective: As a result of the COVID-19 pandemic, public health agencies and school boards across Canada enacted new protocols, including face masks, physical distancing and enhanced hygiene, to support the safe reopening of in-person school. This study explored the experiences and perceptions of teachers instructing children and adolescents in person during a two-day school simulation. Method: This study was part of a large school simulation exercise conducted in Toronto, Ontario. Kindergarten to grade 12 teachers taught in classrooms with either masked students, or students who were un-masked or only masked when physical distancing was not possible. A qualitative descriptive phenomenology approach was utilized, and data were collected via virtual focus groups. Qualitative data analysis involved multiple rounds of inductive coding to generate themes. Results: The sample included 14 teachers (92.9% female; 85.7% White), with a median of 9.5 years teaching experience. Three primary themes emerged: 1) learning to navigate public health measures, 2) needing to adapt teaching strategies and 3) striving to manage conflicting priorities. The majority of teachers reported that mask-wearing and physical distancing impacted their classroom teaching, communication and connection with students. Conclusions: As schools transition to in-person instruction, teachers will be required to play dual roles in education and public health, with implications on safety, teaching and professional identity. Public health agencies and school boards are encouraged to engage teachers in ongoing conversations regarding in-person school planning and operations. Furthermore, evidence-based interventions, including increased teaching development programs, are recommended to support teachers during the COVID-19 pandemic.

Objectif: Conséquemment à la pandémie de la COVID-19, les organismes de santé publique et les conseils scolaires de tout le Canada ont mis en œuvre de nouveaux protocoles, notamment des masques, une distanciation physique et une hygiène accrue, afin de soutenir la réouverture prudente de l'école en personne. La présente étude a exploré les expériences et les perceptions des professeurs instruisant les enfants et les adolescents en personne durant une simulation scolaire de deux jours. Méthode: La présente étude faisait partie d'un grand exercice de simulation scolaire mené à Toronto, Ontario. Les professeurs de la maternelle à la 12e année enseignaient dans des classes où les élèves étaient soit masqués, soit non masqués, soit seulement masqués quand la distanciation physique n'était pas possible. Une approche de phénoménologie qualitative descriptive a été utilisée, et les données ont été recueillies par des groupes de discussion virtuels. L'analyse des données qualitatives impliquait de multiples rondes de codage inductif pour générer des thèmes. Résultats: L'échantillon comportait 14 professeurs (92,9 % de sexe féminin; 85,7 % Blancs), avec une moyenne de 9,5 années d'expérience d'enseignement. Trois principaux thèmes ont émergé : 1) apprendre à naviguer les mesures de santé publique, 2) la nécessité d'adapter les stratégies d'enseignement et 3) s'efforcer de gérer les priorités conflictuelles. La majorité des professeurs a déclaré que le port du masque et la distanciation physique influaient sur leur enseignement en classe, sur la communication et la connexion avec les élèves. Conclusions: Tandis que les écoles font la transition à l'enseignement en personne, les professeurs devront assumer des doubles rôles en éducation et en santé publique, impliquant la sécurité, l'enseignement et l'identité professionnelle. Les organismes de santé publique et les conseils scolaires sont invités à faire participer les professeurs à des conversations actuelles relativement à la planification et aux activités de l'école en personne. En outre, les interventions fondées sur des données probantes, notamment les programmes accrus de développement de l'enseignement, sont recommandées pour soutenir les professeurs durant la pandémie de la COVID-19.

Creation of an electronic patient-reported outcome measure platform Voxe: a mixed methods study protocol in paediatric solid organ transplantation.

INTRODUCTION: Patient-reported outcome measures (PROMs) provide an opportunity for meaningful patient engagement and shared decision-making. The objective of this research programme is to improve health outcomes for paediatric solid organ transplant patients by implementing PROMs into clinical care. The current study aims to create Voxe, a paediatric user-centred electronic PROM platform, by engaging patients and healthcare providers throughout the design and development process. METHODS AND ANALYSIS: The creation of Voxe will occur over two phases that build on previous research. The user interface design phase employs a 'user-centric' approach to identify end-users' needs and iteratively refine the look and layout of Voxe to meet these needs. Transplant recipients, aged 10-17, and healthcare providers will participate in three rounds of testing (24 participants total). Participants will: (1) complete task-based activities (outcomes-effectiveness and efficiency), (2) complete questionnaires (outcome-satisfaction) and (3) participate in a semi-structured interview. The following phase involves software development and Voxe usability testing. Transplant recipients, aged 8-17, and healthcare providers will participate in four rounds of iterative testing (24-40 participants total). The think-aloud technique will be employed, and participants will describe their thoughts and feelings while interacting with a Voxe prototype. Participants will: (1) log into Voxe and complete tasks (outcomes-time on task, successful task completion, frequency of critical and non-critical errors and error-free rate), (2) complete questionnaires (outcome-satisfaction) and (3) participate in a semi-structured interview. Findings will result in the creation and launch of a user-centred electronic PROM platform. ETHICS AND DISSEMINATION: Research ethics board approval has been provided by The Hospital for Sick Children. This research is critical to answering methodological and operational questions to inform Voxe implementation in paediatric clinical settings and facilitate PROM data collection. Future investigations will include an implementation-effectiveness evaluation.

Correction: "Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada.

[This corrects the article DOI: 10.1371/journal.pone.0226686.].

"Tremendous financial burden": Crowdfunding for organ transplantation costs in Canada.

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.