La mort d'un enfant est considérée comme l'une des expériences les plus difficiles à laquelle une personne puisse faire face. Les cliniciens, les hôpitaux et plusieurs organismes ont pour objectif d’aider les parents endeuillés, mais leurs efforts sont compliqués par un manque de recherche dans le domaine du deuil parental. Cette thèse est composée de trois articles, soit deux revues de littérature et une étude empirique, qui tentent de combler cette lacune et d’informer les services en soins palliatifs pédiatriques et les services de soutien au deuil en particulier. Le premier article porte sur les besoins des patients recevant des soins palliatifs pédiatriques et de leurs familles. Par le biais d’un méta-résumé de la recherche descriptive et qualitative récente, 10 domaines de besoins ont été identifiés qui correspondent aux lignes directrices actuelles en soins palliatifs pédiatriques et de fin de vie. Ces besoins sont présentés de manière à être facilement applicables à la pratique. Cependant, les résultats mettent aussi en évidence plusieurs aspects des soins identifiés comme déficitaires ou problématiques qui mériteraient une attention particulière dans le cadre de politiques futures. Dans le deuxième article, l'objectif était de résumer une vaste littérature d'une manière utile aux cliniciens. À cette fin, une synthèse narrative a permis d’intégrer la recherche quantitative et qualitative dans le domaine du deuil parental. Les résultats mettent en évidence les éléments susceptibles de favoriser l’adaptation des parents au deuil, éléments qui suggèrent par le fait même des avenues possibles de soutien et d'intervention. Cette synthèse a cependant cerné dans la littérature certaines failles méthodologiques qui rendent l'applicabilité clinique des résultats difficile. L'objectif du troisième article était d'informer les services de suivi et de soutien au deuil auprès des parents en se renseignant directement auprès de parents endeuillés. À cette fin, 21 parents (dont 8 couples) et 7 membres du personnel impliqués dans des activités de suivi de deuil de 2 hôpitaux pédiatriques ont été interrogés dans le cadre d’une description interprétative, et l'application clinique des résultats a été vérifiée par le biais de réunions avec des collaborateurs de recherche et les décideurs des centres hospitaliers. Les résultats décrivent comment les parents ont fait face à leur détresse dans la phase précoce de leur deuil, ainsi que leurs points de vue sur la façon dont les divers services de suivi de deuil ont été aidants. Les résultats suggèrent que les parents gèrent leurs sentiments intenses de douleur par une alternance de stratégies axées soit sur leur deuil ou sur leur quotidien et que dans plusieurs cas leurs relations avec autrui les ont aidé. Cette étude a également permis d'élucider la façon dont divers services de soutien aide les parents à aborder leur deuil. Les implications cliniques de ces résultats sont discutées ainsi que des recommandations à l’intention de ceux qui sont impliqués dans la provision des services en deuil. / The death of a child is considered one of the most stressful and difficult experiences a person can face. Clinicians, hospitals, and other organizations want to help and support bereaved parents through their grief, but their efforts are hampered by a lack of research in the area of parental bereavement. This dissertation is comprised of two literature reviews and one empirical study that attempt to address this gap and inform services in paediatric palliative care in general, and in bereavement support in particular. The first article consists of an examination of the needs of patients receiving paediatric palliative care and their families. By metasummarizing the descriptive and qualitative research in the area, 10 need domains were found. The results were generally in agreement with current guidelines in paediatric palliative and end-of-life care; however, there were several aspects of care that were reported as lacking or problematic that are not addressed in these guidelines and that should be considered in future guideline and policy creation. In the second article, parents’ adaptation to their grief and elements found to influence their adaptation were examined. The aim was to synthesize the relevant literature in a way that could be useful to clinicians; to this end, a narrative synthesis method was employed in order to synthesize both quantitative and qualitative research in the area of parental bereavement. The results suggest important elements to keep in mind when assessing how parents adapt to their grief. The results also suggest aspects related to better adaptation, which could serve as potential avenues for support and intervention. However, this review also demonstrated certain methodological issues in the literature that hinder the synthesis and clinical applicability of the findings. The objective of the third article was to inform bereavement follow-up and support services through the use of an interpretive description methodology. To this end, 21 bereaved parents (including 5 parental couples) and 7 hospital staff involved in bereavement follow-up activities at two paediatric hospitals were interviewed, and the clinical applicability of the results verified through various meetings with project collaborators and service/program providers. The results of the study describe how parents coped with their grief in the early phase of their bereavement, as well as their perspectives on how various bereavement follow-up services helped them cope. We found that parents regulate their intense feelings of grief through either loss-oriented or restoration-oriented strategies, including attempts to reorganize their self-identity and connection to their deceased child; often parents’ relationships with others help them cope in these ways. The insights we gained from the respondents also allowed us to elucidate how various bereavement support and follow-up services were helpful. These results are discussed along with the clinical implications and how these findings can inform bereavement service providers.

Introduction : La mortalité associée à l’insuffisance rénale aiguë (acute kidney injury ‘’AKI’’) aux soins intensifs pédiatriques (SIP) dépasse les 50%. Des études antérieures sur la thérapie de remplacement rénal (TRR) ont fait ressortir plusieurs facteurs de risque de mortalité dont le syndrome de défaillance multiviscérale (SDMV) et la surcharge liquidienne ≥ 10 à 20% avant l’initiation de la TRR. L’objectif de cette étude était d’identifier les principaux facteurs de risque de mortalité à 28 jours après l’initiation de la TRR chez les patients atteints d’AKI aux SIP. Méthode : Il s’agit d’une étude de cohorte rétrospective aux SIP d’un centre tertiaire. Tous les enfants ayant reçus de la TRR continue ou de l’hémodialyse intermittente pour AKI, entre janvier 1998 et décembre 2014, ont été inclus. Les facteurs de risque de mortalité ont été préalablement identifiés par quatre intensivistes et deux néphrologues pédiatres et analysés à l’aide d’une régression logistique multivariée. Résultats : Quatre-vingt-dix patients ont été inclus. L’âge médian était de 9 [2-14] ans. La principale indication d’initiation de la TRR était la surcharge liquidienne (64,2%). La durée médiane d’hospitalisation aux SIP était de 18,5 [8,0-31,0] jours. Quarante patients (44,4%) sont décédés dans les 28 jours suivant l’initiation de la TRR et quarante-cinq (50,0%) avant la sortie des SIP. Le score de PELOD ≥ 20 (OR 4,66 ; 95%CI 1,68-12,92) et la surcharge liquidienne ≥ 15% (OR 9,31; 95%CI 2,16-40,11) à l’initiation de la TRR étaient associés de façon indépendante à la mortalité. Conclusion : Cette étude a permis de faire ressortir deux facteurs de risque de mortalité à 28 jours à l’initiation de la TRR : la surcharge liquidienne et la sévérité du SDMV mesurée par le score de PELOD. / Introduction: Mortality rate associated with acute kidney injury (AKI) in pediatric intensive care units (PICU) exceeds 50%. Prior studies on renal replacement therapy (RRT) have highlighted different mortality risk factors including the presence of a multiple organ dysfunction syndrome (MODS) and fluid overload ≥ 10 to 20% before starting RRT. The aim of this study was to identify most important risk factors of 28-day mortality in patients with AKI at RRT initiation in PICU. Methods: We conducted a retrospective cohort study in a tertiary care pediatric center. All critically ill children who underwent acute continuous RRT or intermittent hemodialysis for AKI between January 1998 and December 2014 were included. A case report form was developed and specific risk factors were identified by a panel of four pediatric intensivists and two nephrologists. Risk factors analysis was made using logistic regression in SPSS and SAS software. Results: Ninety patients were included. The median age was 9 [2-14] years. The most common indication for RRT initiation was fluid overload (FO) (64.2%). The median PICU length of stay was 18.5 [8.0-31.0] days. Forty of the 90 patients (44.4%) died within 28 days after RRT initiation and forty-five (50.0%) died before PICU discharge. In a multivariate logistic regression analysis, a PELOD score ≥ 20 (OR 4.66; 95%CI 1.68-12.92) and percentage of FO ≥ 15% (OR 9.31; 95%CI 2.16-40.11) at RRT initiation were independently associated with mortality. Conclusion: This study suggests that fluid overload and severity of MODS measured by PELOD score are two risk factors of 28-day mortality in PICU patients on RRT.

Introduction: La ventilation non invasive (VNI) est un outil utilisé en soins intensifs pédiatriques (SIP) pour soutenir la détresse respiratoire aigüe. Un échec survient dans près de 25% des cas et une mauvaise synchronisation patient-ventilateur est un des facteurs impliqués. Le mode de ventilation NAVA (neurally adjusted ventilatory assist) est asservi à la demande ventilatoire du patient. L’objectif de cette étude est d’évaluer la faisabilité et la tolérance des enfants à la VNI NAVA et l’impact de son usage sur la synchronie et la demande respiratoire. Méthode: Étude prospective, physiologique, croisée incluant 13 patients nécessitant une VNI dans les SIP de l’hôpital Ste-Justine entre octobre 2011 et mai 2013. Les patients ont été ventilés successivement en VNI conventionnelle (30 minutes), en VNI NAVA (60 minutes) et en VNI conventionnelle (30 minutes). L’activité électrique du diaphragme (AEdi) et la pression des voies aériennes supérieures ont été enregistrées pour évaluer la synchronie. Résultats: La VNI NAVA est faisable et bien tolérée chez tous les enfants. Un adolescent a demandé l’arrêt précoce de l’étude en raison d’anxiété reliée au masque sans fuite. Les délais inspiratoires et expiratoires étaient significativement plus courts en VNI NAVA comparativement aux périodes de VNI conventionnelle (p< 0.05). Les efforts inefficaces étaient moindres en VNI NAVA (résultats présentés en médiane et interquartiles) : 0% (0 - 0) en VNI NAVA vs 12% (4 - 20) en VNI conventionnelle initiale et 6% (2 - 22) en VNI conventionnelle finale (p< 0.01). Globalement, le temps passé en asynchronie a été réduit à 8% (6 - 10) en VNI NAVA, versus 27% (19 - 56) et 32% (21 - 38) en périodes de VNI conventionnelle initiale et finale, respectivement (p= 0.05). Aucune différence en termes de demande respiratoire n’a été observée. Conclusion: La VNI NAVA est faisable et bien tolérée chez les enfants avec détresse respiratoire aigüe et permet une meilleure synchronisation patient-ventilateur. De plus larges études sont nécessaires pour évaluer l’impact clinique de ces résultats. / Introduction: The need for intubation after noninvasive ventilation (NIV) failure is frequent in the pediatric intensive care unit (PICU). One reason is patient-ventilator asynchrony during NIV. Neurally adjusted ventilatory assist (NAVA) is a mode of ventilation controlled by the patient’s neural respiratory drive. The aim of this study was to assess the feasibility and tolerance of NIV-NAVA in children and to evaluate its impact on synchrony and respiratory effort. Methods: This prospective, physiologic, crossover study included 13 patients requiring NIV in the PICU of Sainte-Justine’s Hospital from October 2011 to May 2013. Patients were successively ventilated in conventional NIV as prescribed by the physician in charge (30 minutes), in NIV-NAVA (60 minutes), and again in conventional NIV (30 minutes). Electrical activity of the diaphragm (EAdi) and airway pressure were simultaneously recorded to assess patient-ventilator synchrony. Results: NIV-NAVA was feasible and well tolerated in all patients. One patient asked to stop the study early because of anxiety related to the leak-free facial mask. Inspiratory trigger dys-synchrony and cycling-off dys-synchrony were significantly shorter in NIV-NAVA versus initial and final conventional NIV periods (both p< 0.05). Wasted efforts were also decreased in NIV-NAVA (all values expressed as median and interquartile values): 0 (0 - 0) in NIV-NAVA versus 12% (4 - 20) and 6% (2 - 22) in initial and final conventional NIV, respectively (p< 0.01). As a whole, total time spent in asynchrony was reduced to 8% (6 - 10) in NIV-NAVA, versus 27% (19 - 56) and 32% (21 - 38) in initial and final conventional NIV, respectively (p= 0.05). No difference in term of respiratory effort was noted. Conclusion: NIV-NAVA is feasible and well tolerated in PICU patients and allows improved patient-ventilator synchronization. Larger controlled studies are warranted to evaluate the clinical impact of these findings.

O desenvolvimento de Unidades de Terapia Intensiva Pediátrica (UTIP) aumentou a sobrevida de pacientes graves, que passaram a receber alta das UTIP e, conseqüentemente, aumentou o número de doenças crônicas sequelares. A proposta deste trabalho é identificar se houve diminuição da expectativa média de vida das crianças, após cinco anos de alta da UTIP, quais tipos de co-morbidades apresentam e identificar alterações no desempenho escolar, observando se necessitam de escola regular ou especial, os índices de reprovação e abandono escolar, correlacionando-os com situação sócio-econômica, doença da internação e tipo de atendimento prestado, público ou privado, no momento da internação. A pesquisa iniciou identificando as crianças internadas na UTIP da Santa Casa de Maringá, que possui atendimento misto (SUS E NÃO SUS), desde que, no momento da internação, apresentassem mais de vinte e oito dias de idade, ficassem internadas por mais de 24 horas e não evoluíssem para óbito durante a internação. Após seleção, aplicamos dois questionários, o primeiro relacionado à internação, com dados pessoais e clínicos, e o segundo aplicado às famílias das crianças encontradas após cinco anos da alta. Encontramos 84% da amostra, com taxa de sobrevida de 88% e 98% para NÃO SUS e SUS respectivamente. Observamos que 35% das crianças estão em escola especial e 18% com seqüelas motoras. No restante das crianças, o índice de reprovação chega a 45%, com 5% de abandono escolar / The development of Pediatric Intensive Care Units (PICU) increased the survival of critically ill patients, now discharged from PICU, and consequently, increased the number of chronic diseases and sequelae. The purpose of this study is to identify whether there was a decrease of average life expectancy of children after five years of discharge from PICU, what types of co morbidities present and identify changes in school performance, noting if they need regular or special school, the failure rates and dropout, correlating them with socioeconomic status, disease hospitalization and type of care provided, public or private, at the time of admission. The research began by identifying the children admitted to the PICU at Santa Casa de Maringá, which has mixed attendance (SUS AND NON SUS) since, at the time of admission, presented more than twenty-eight days old, stayed in hospital for more than 24 hours and not died during hospitalization. After selection, we applied two questionnaires, the first related to the hospital, with personal and clinical data, and the second applied to childrens families found five years after discharge. We found 84% of the sample, with survival rate of 88% and 98% for NO SUS and SUS, respectively. We observed that 35% of children are at special school and 18% of them with motor sequelae. In the remaining children, the failure rate is about 45%, with 5% of dropout

O desenvolvimento de Unidades de Terapia Intensiva Pediátrica (UTIP) aumentou a sobrevida de pacientes graves, que passaram a receber alta das UTIP e, conseqüentemente, aumentou o número de doenças crônicas sequelares. A proposta deste trabalho é identificar se houve diminuição da expectativa média de vida das crianças, após cinco anos de alta da UTIP, quais tipos de co-morbidades apresentam e identificar alterações no desempenho escolar, observando se necessitam de escola regular ou especial, os índices de reprovação e abandono escolar, correlacionando-os com situação sócio-econômica, doença da internação e tipo de atendimento prestado, público ou privado, no momento da internação. A pesquisa iniciou identificando as crianças internadas na UTIP da Santa Casa de Maringá, que possui atendimento misto (SUS E NÃO SUS), desde que, no momento da internação, apresentassem mais de vinte e oito dias de idade, ficassem internadas por mais de 24 horas e não evoluíssem para óbito durante a internação. Após seleção, aplicamos dois questionários, o primeiro relacionado à internação, com dados pessoais e clínicos, e o segundo aplicado às famílias das crianças encontradas após cinco anos da alta. Encontramos 84% da amostra, com taxa de sobrevida de 88% e 98% para NÃO SUS e SUS respectivamente. Observamos que 35% das crianças estão em escola especial e 18% com seqüelas motoras. No restante das crianças, o índice de reprovação chega a 45%, com 5% de abandono escolar / The development of Pediatric Intensive Care Units (PICU) increased the survival of critically ill patients, now discharged from PICU, and consequently, increased the number of chronic diseases and sequelae. The purpose of this study is to identify whether there was a decrease of average life expectancy of children after five years of discharge from PICU, what types of co morbidities present and identify changes in school performance, noting if they need regular or special school, the failure rates and dropout, correlating them with socioeconomic status, disease hospitalization and type of care provided, public or private, at the time of admission. The research began by identifying the children admitted to the PICU at Santa Casa de Maringá, which has mixed attendance (SUS AND NON SUS) since, at the time of admission, presented more than twenty-eight days old, stayed in hospital for more than 24 hours and not died during hospitalization. After selection, we applied two questionnaires, the first related to the hospital, with personal and clinical data, and the second applied to childrens families found five years after discharge. We found 84% of the sample, with survival rate of 88% and 98% for NO SUS and SUS, respectively. We observed that 35% of children are at special school and 18% of them with motor sequelae. In the remaining children, the failure rate is about 45%, with 5% of dropout

La prestation de soins critiques et d'orthophonie en milieu pédiatrique nécessite beaucoup de travail pour atteindre le niveau de soins souhaité. Plusieurs facteurs contribuent à ce problème, parmi lesquels la pénurie de ressources, les besoins pressants et l’augmentation du nombre d’enfants malades. Parmi les solutions proposées, beaucoup pensent que la télémédecine synchrone peut être utile en donnant un accès virtuel immédiat aux compétences à distance. Ainsi, l'expertise pourrait être instantanément disponible via une plateforme permettant une communication efficace et capable de soutenir les soins pédiatriques. La télémédecine s’est beaucoup développée dans la prestation des soins critiques et de réadaptation pédiatriques, et ce aux plans diagnostique et thérapeutique. Pourtant, peu d’études ont examiné la faisabilité et évalué l’impact de la télémédecine sur la qualité des soins critiques et de réadaptation pédiatrique. L'objectif principal de cette thèse était d'évaluer la faisabilité de la télémédecine synchrone dans deux contextes pédiatriques, critique et réadaptation, et d'évaluer son influence sur le processus de prestation de soins pédiatriques. Le premier article présente les résultats d'une revue systématique qui synthétisait des études évaluant l'impact des modèles de télémédecine synchrone sur les résultats cliniques dans les établissements de soins de courte durée en pédiatrie. Les résultats ont révélé que l’utilisation de la télémédecine synchrone avait pour effet d’améliorer la qualité des soins, de diminuer le taux de transfert, de réduire de la durée du séjour, de modifier ou renforcer le plan de soins médicaux, de réduire les complications et la gravité de la maladie, et de diminuer le taux de mortalité hospitalière et standardisé. Cependant, la revue de l’état de connaissances a révélé que la qualité des études incluses était faible et que des preuves de haute qualité étaient nécessaires. Le deuxième article, fondé sur un devis pré/post, évalue la faisabilité de la télémédecine à domicile en orthophonie et son impact sur la satisfaction des enfants et orthophonistes, le coût économique, et les performances vocales. Cette étude a montré que la télémédecine en orthophonie était faisable et que les enfants et les orthophonistes étaient satisfaits du service. En outre, l'utilisation de la télémédecine en orthophonie a permis d'améliorer la voix et de faire économiser de l'argent aux parents. Le troisième article évalue la faisabilité de la mise en place d’une plate-forme de télémédecine synchrone dans l’unité des soins intensifs pédiatriques (USIP). Pour qu'une solution de télémédecine synchrone à l’USIP soit faisable, elle nécessite une bonne préparation préalable à la mise en œuvre de la plate-forme de télémédecine synchrone pour être réellement utile. Avec des médecins résidents compétents et autonomes, l’utilité d’une plate-forme de télémédecine synchrone reliant les intensivistes pédiatriques hors site et les médecins résidents sur site à l’USIP est faible. Cette étude a ajouté qu'un tel service pourrait être plus bénéfique que le modèle traditionnel des soins (face à face) pour les communications avec d'autres établissements de soins de santé éloignés, où le besoin d'expertise d'un intensiviste en soins intensifs pédiatriques est plus important. Ces trois études permettent de conclure que la télémédecine synchrone est réalisable et peut avoir un impact sur la qualité des soins intensifs et de réadaptation pédiatrique. On peut déduire de cette thèse qu'il est important de prendre en compte le contexte dans lequel la technologie sera mise en œuvre. Traiter le contexte de l’USIP et celui de réadaptation de la même manière n'aboutit pas aux mêmes résultats et une innovation technologique pourrait réussir dans un contexte et échouer dans un autre. / Delivering critical and speech-language pathology care in pediatric settings requires much hard work to reach the desired level of care for children. Several factors contribute to this problem, including resources shortage, pressing needs, and the growing number of ill children. Among the proposed solutions, many believe that synchronous telemedicine can play a role by providing virtual and immediate access to remote skills, with expertise could be made instantly available through a platform that allows efficient communication and is able to support pediatric care. Telemedicine has developed significantly in the provision of critical care and pediatric rehabilitation in terms of diagnosis and therapy. Yet, few studies have examined the feasibility and evaluated the impact of telemedicine on the quality of pediatric critical care and rehabilitation. The main objective of this dissertation was to assess the feasibility of synchronous telemedicine in two pediatric settings—critical care and rehabilitation—and to evaluate its influence on the process of providing pediatric care. The first article presented the results of a systematic review that synthesized studies evaluating the impacts of synchronous telemedicine models on clinical outcomes in pediatric acute care settings. The findings revealed that the use of synchronous telemedicine improved quality of care and resulted in a lower transfer rate, a shorter length of stay, a change in or reinforcement of the medical care plan, a reduction in complications and illness severity, and a low hospital standardized mortality rate. However, the review of the state of knowledge revealed that the quality of the included studies was weak, so more high-quality evidences is needed. The second article, which used a pre/post design, assesses the feasibility assessed the feasibility of home-based telepractice in speech-language pathology (TSLP) and its impact on satisfaction among the children and speech-language pathologists, economic cost, and voice performance. This study showed that TSLP is feasible and that both the children and the speech-language pathologists were satisfied with the service. In addition, the use of TSLP demonstrated more voice improvement at less cost to the parents. The third article evaluated the feasibility of implementing a synchronous telemedicine platform in a pediatric intensive care unit (STEP-PICU). For a STEP-PICU to be feasible and truly helpful, it needs good preparation for the implementation of the telemedicine solution. With competent and autonomous fellows (a fellow is a physician who has completed their residency and elects to complete further training in a subspecialty), the usefulness of an synchronous telemedicine (STM) platform linking off-site pediatric intensivists and on-site fellows in a PICU is limited. This study added that such a service could be more beneficial than the traditional model of care (face to face) for communications with other remote healthcare facilities, where there is a greater need for the expertise of a pediatric critical care intensivist. These three studies allow us to conclude that STM is feasible and can have an impact on the quality of pediatric intensive care and rehabilitation. This thesis underscores the importance of taking into consideration the context in which the technology will be implemented. Treating the PICU and the rehabilitation contexts in the same way does not lead to the same results, and a technological innovation that succeeds in one setting may fail in another.

Indiana University-Purdue University Indianapolis (IUPUI) / Technology dependent children such as those who require a feeding tube, tracheotomy or ventilator are a special group of chronically ill children who require complex care on a daily basis. When these children are hospitalized, the accompanying parent and the nurse caring for the child on the inpatient unit must communicate together about the care of the child. Care for the technology dependent child is optimized when parents and nurses both understand the plan of care for the child. To discover the process of parent-nurse communication that results in mutual understanding of the child’s plan of care, a grounded theory study to explore the perspectives of the parents of previously hospitalized technology dependent children was undertaken. The Theory of Shared Communication emerged from the data and illuminates the parent-nurse communication process. The antecedents of the process are respect for own and others expertise. The communication process consists of six communication behaviors; ask, listen, explain, advocate, verify understanding and negotiate roles. The behaviors are nested within each other and all are not necessarily required for the non-linear process to result in the relational outcome of mutual understanding of the child’s plan of care. An integrative review of the literature regarding the process of communication between parents of hospitalized chronically ill children and their nurses shed light on the components of the process, but no study was found that explicated the entire communication process. A subsequent grounded theory study added the perspectives of the nurses to the original theory. No new components of the process were uncovered, but the nurse’s narratives added significantly to our understanding of the communication process. Additionally, parents of currently hospitalized technology dependent children confirmed the propositions of the Theory of Shared Communication.