A local problem exists with transition service providers lacking the skills and knowledge necessary to effectively implement transition planning practices, ensuring youth with disabilities experience positive in-school and post school success. The purpose of this basic qualitative study was to investigate transition service provider perceptions of implementation variables that impact the transition service providers' use of evidence-based practices with youth with disabilities. Kohler, Gothberg, Fowler, and Coyle's Taxonomy for Transition Programming 2.0 was used as the conceptual framework for this study. Interview participants included 5 special educators, 4 general educators, 2 district administrators, 2 child study team members, and 2 guidance counselors. Open coding and thematic analysis were used to analyze the results from 15 participants. Themes that emerged from the results of this study were the need for professional development for educators and the need for assistance with parental engagement in the transition planning process. Results from this study may provide positive social change in the form of data to inform future professional development for schools and districts across the United States regarding how to provide meaningful transitional support to youth with disabilities.

Background: A growing population of youth with medical complexity (YMC) are surviving into adulthood and being forced to transition from pediatric to adult health care. YMC and their families face significant challenges during this transition, putting them at risk for service fragmentation, inadequate care, and negative health outcomes. Existing interventions to support transition continue to have limited benefits for this group, demonstrating a clear need for tailored supports, informed by the perspectives of YMC and their families. Currently, these families’ transition experiences are poorly understood in the Canadian context. Thus, the aim of this dissertation was to holistically examine the experiences of families of YMC with the transition to adult care in Ontario. Methods: This sandwich thesis consists of: 1) a meta-ethnography synthesizing qualitative literature about the experiences of YMC and their families during the transition to adulthood; and 2) a patient-oriented qualitative case study exploring: i) how families of YMC adapt to the transition to adult care; ii) the influence of contextual factors; and iii) family recommendations for support. Findings: Transition impacts nearly all aspects of the youth’s and family’s lives. Families encounter numerous challenges in their pursuit of a good future and they “survive” by advocating, making sacrifices, and persisting despite inequities. Furthermore, families’ experiences are shaped by the complex interplay of personal and environmental factors. Conclusion: Implications for nursing practice, health care provider education, and health policy focus on: supporting nurses to provide instrumental and psychological support to families; building capacity in primary care (e.g., through nurse-led models of care); training health professionals on complex care management; and advocating for system-wide strategies to improve health care transition. Future research should prioritize the co-design and evaluation of interventions to address families’ information and emotional needs and training initiatives to facilitate the implementation of recommendations into practice. / Thesis / Doctor of Philosophy (PhD) / Youth with medical complexity have serious illness and intensive care needs. Recent advances in technology have led to more of these youth living into adulthood and moving to adult health care. The transition to adult care puts their health at risk and is highly stressful for their families. Currently, little is known about how these families cope with this transition and what help they need. This thesis aims to address these gaps by reviewing existing research and interviewing youth and families about their experiences. Findings show that the transition to adult care greatly affects many parts of the youth’s and family’s lives. Families cope with these changes by advocating, making sacrifices, and persisting in the face of inequities. Study findings can help guide nurses, other health care providers, and policy makers to better support these youth and families in their transition to adult care.

Problemställning: Fler barn och ungdomar med kroniska sjukdomar övergår till vuxensjukvård då medicinsk och medicinteknisk utveckling blivit mer avancerad. Detta ställer krav på vuxensjukvården att kunna ta över ungdomar som kommer från barnsjukvården så att de upplever en god och tillfredställande vård. Det finns dock lite forskning kring hur övergången till vuxensjukvård upplevs av ungdomar med kroniska sjukdomar. Syfte: Syftet var att beskriva hur ungdomar med kronisk sjukdom upplever övergången från barn- till vuxensjukvård. Metod: Studien genomfördes som en litteraturöversikt och baserades på 14 vetenskapliga artiklar. Dessa granskades, analyserades och kategoriserades för att finna likheter och skillnader i ungdomars upplevelse av övergången till vuxensjukvård. Resultat och Konklusion: I resultatet framkom fem kategorier som benämdes ”Känslan av att bli vuxen”, ”Oro och Rädsla”, ”Att känna sig förberedd och delaktig”, ”Kommunikation mellan vårdenheterna” och ”Skilda världar”. Att övergå till vuxensjukvård innebar en period av oro och rädsla. Ungdomar med kroniska sjukdomar upplevde att förberedelser och delaktighet inför övergången var otillräcklig och påbörjades alltför sent. De upplevde även en bristande kommunikation mellan patient och vårdpersonal samt mellan barn- och vuxensjukvård, vilket försvårade övergången. Implikation: Det är av stor betydelse att sjukvården utarbetar tydligare riktlinjer och utvecklar samarbetet mellan barn- och vuxensjukvård i syfte att underlätta övergången för ungdomarna. Det behövs vidare forskning kring hur detta samarbete skulle kunna se ut för att tillgodose ungdomarnas behov av förberedelser och delaktighet i sin egenvård och i övergångsprocessen. / Problem: Increasing numbers of children and adolescents with chronic diseases transfer to adult health care due to the fact that the medical and technological developments have become more advanced. This requires that the adult care is capable to transfer young people from childcare so that they experience a good and satisfying care. However, there is little research about how the transition to adult care is experienced by young people with chronic diseases. Aim: The aim was to describe how young people with chronic disease experience the transition from child to adult care. Method: The study was conducted as a literature review and was based on 14 scientific articles. These were reviewed, analyzed and categorized to identify similarities and differences in young people's experience of transition to adult care. Results and Conclusion: The results revealed five categories: "Feelings of becoming an adult," "Worry and Fear", "To feel prepared and involved", "Communication between care units" and "Different worlds". Changing to adult care meant a period of anxiety and fear. Adolescents with chronic disease felt that the preparation and participation due to transition was inadequate and began too late. They also experienced a lack of communication between patients and health professionals, and between child and adult care, which made the transition difficult and complicated. Implication: It is important that health care is developing clearer guidelines and develop cooperation between adult and child care in order to facilitate the transition of young people. There is further need of research on how this could be formed in order to satisfy young people´s needs for preparation and participation in their self-care and in the transition process.

L’amélioration du pronostic des pathologies chroniques à début pédiatrique s’est accompagnée d’un nombre grandissant de patients atteignant l’âge adulte. Cependant, l’adolescence et l’entrée dans la vie adulte est une période de multiples changements et de crises, pouvant être à l’origine de rupture avec le système de soins et de complications médicales. Dans cette thèse, j’ai tout d’abord décrit les hospitalisations et la mortalité des jeunes ayant été déclarés en affection de longue durée (ALD) avant 14 ans (N=1752), en comparaison à des jeunes sans pathologie chronique (N=52346). Pour cela, une cohorte rétrospective (2005-2014) a été reconstruite à partir de l’échantillon généraliste des bénéficiaires de l’Assurance maladie. Environ 3% des jeunes de 14 ans avaient déjà été déclarés en ALD. Les profils de mortalité par sexe et les tendances par âge de l’incidence des hospitalisations étaient différents de ceux de la population générale du même âge, en particulier après 18 ans, où l’on observait une chute de l’incidence des hospitalisations. Ensuite, à partir de ces mêmes données, j’ai montré que le pronostic de ces jeunes malades, y compris la mortalité, était associé à la précarité sociale, mesurée par la couverture maladie universelle complémentaire, montrant ainsi que la gratuité des soins à laquelle ces jeunes ont droit dans le système de santé français ne permettait pas de compenser les inégalités sociales dans cette population. Enfin, à un moment ou un autre, ces jeunes sont transférés vers un service d’adultes. Ce passage est un moment crucial dans leur suivi, qui peut être à l’origine d’une discontinuité du suivi médical. Des programmes de transition sont mis en place progressivement pour préparer et accompagner ce transfert. J’ai réalisé une revue systématique de la littérature (23 études) qui a montré qu’il existait deux aspects de la continuité des soins au moment de ce transfert : l’engagement (premier contact) et le maintien dans le suivi en service d’adultes. Cette analyse a également mis en exergue la pauvreté des études existant actuellement pour évaluer les programmes de transition en termes de continuité des soins. Finalement, ces résultats soulèvent de nombreuses questions, notamment les stratégies d’adaptation de ces jeunes vis-à-vis des situations à haut risque et le rôle du transfert en service d’adultes sur le comportement des patients, le pronostic et les pratiques cliniques. Des études incluant largement l’ensemble des jeunes atteints d’une pathologie chronique, intégrant notamment des facteurs liés à l’organisation des soins, liés à la pathologie, individuels et familiaux, devraient être encouragées. / The prognosis of childhood-onset chronic conditions has improved, such that more patients now reach adulthood. However, adolescence and entry into adulthood is a critical period that may be associated with poor outcomes, including gaps in care continuity and medical complications. Here, I first described hospitalization and mortality rates in youths registered for a long-term disease (LTD) before the age of 14 (N=1,752), relative to those with no LTD (N=52,346). A retrospective cohort (2005-2014) was built from a sample of the French national health insurance database, called Echantillon généraliste des Bénéficiaires. Approximately 3% of 14-year-old youths had been registered for a LTD. The mortality patterns by gender and the trend in hospitalization rates by age were different from those in the general population of the same age, especially after reaching the age of 18, which was followed by a fall in hospitalization rates. Then, using the same data, I showed that the prognosis of these youths living with a chronic disease, including mortality, was associated with low socio-economic level, as measured by being covered by Couverture Maladie Universelle Complementaire, a public complementary health insurance offering free access to care, delivered on the basis of very low househould incomes. Hence, overcoming financial barriers did not offset social health inequalities in this population. At last, one day, these youths have to be transferred to adult care. Moving to adult care is a critical time in patients’ follow-up that may lead to discontinuity in medical care. Transition programs are being gradually implemented, to prepare and smooth the transfer and support youths during this period. I performed a systematic review of literature (23 studies) that highlighted two aspects of continuity of care during transfer: engagement (first contacts) and retention in adult care once the first contact has been established. This review also emphasized the paucity of knowledge to evaluate transition programs in terms of care continuity. Finally, the results of this PhD raises many issues that need to be addressed, including coping strategies of young patients with high risk situations, and the role of transfer to adult care on patient behavior, prognosis and clinical practices. Studies involving patients with a large spectrum of severe chronic diseases, including factors related to healthcare organization, related to the disease, individual and familial, should be encouraged.

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Submitted by Milena Rubi (milenarubi@ufscar.br) on 2017-08-11T17:44:41Z No. of bitstreams: 1 GINZEL_Flavia_2017.pdf: 64374437 bytes, checksum: 72d1bd50ec3a584fc26bb24f0fbae207 (MD5) / Approved for entry into archive by Milena Rubi (milenarubi@ufscar.br) on 2017-08-11T17:44:50Z (GMT) No. of bitstreams: 1 GINZEL_Flavia_2017.pdf: 64374437 bytes, checksum: 72d1bd50ec3a584fc26bb24f0fbae207 (MD5) / Approved for entry into archive by Milena Rubi (milenarubi@ufscar.br) on 2017-08-11T17:44:54Z (GMT) No. of bitstreams: 1 GINZEL_Flavia_2017.pdf: 64374437 bytes, checksum: 72d1bd50ec3a584fc26bb24f0fbae207 (MD5) / Made available in DSpace on 2017-08-11T17:45:00Z (GMT). No. of bitstreams: 1 GINZEL_Flavia_2017.pdf: 64374437 bytes, checksum: 72d1bd50ec3a584fc26bb24f0fbae207 (MD5) Previous issue date: 2017-03-08 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (Capes) / The main objective of this research is to understand the transition modes for the adult life of University students. From comprehensive interviews guided by a semi-directive script, we sought to understand a set of experiences and challenges - especially in the University, in the world of work and in family life - that could be revealing of the processes of transition to adult life lived by ten young people - five girls and five boys - who study at the Federal University of São Carlos - Sorocaba campus. Held between the years of 2015 and 2016, the study focused on students from different courses and social insertions who had already attended at least half of their degree. The analysis of their narratives evidenced a multiplicity of trajectories, which are characterized by non-linear biographical pathways. The study revealed the importance of the new policies of access and permanence in the University, which have promoted a growing heterogeneity of subjects in a space historically restricted to the elites. In addition, it was possible to observe that while the trajectories are increasingly heterogeneous and unique, structural issues - especially linked to social origin and gender - appear as common challenges to be faced by girls and boys in their processes to conquer autonomy and Independence. / A pesquisa tem como objetivo central compreender os modos de transição para a vida adulta de jovens universitários. A partir de entrevistas compreensivas orientadas por um roteiro semi-diretivo, buscou-se apreender um conjunto de experiências e desafios – especialmente na universidade, no mundo do trabalho e na vida familiar – que pudessem ser reveladores dos processos de transição para vida adulta vividos por dez jovens - cinco moças e cinco rapazes - que estudam na Universidade Federal de São Carlos campus Sorocaba. Realizado entre os anos de 2015 e 2016, o estudo focalizou estudantes de diferentes cursos e inserções sociais que já tivessem cursado pelo menos a metade da graduação. A análise de suas narrativas evidenciou uma multiplicidade de trajetórias, as quais se caracterizam por percursos biográficos não-lineares. O estudo revelou a importância das novas políticas de acesso e permanência na universidade, as quais vêm promovendo uma crescente heterogeneidade de sujeitos em um espaço historicamente restrito às elites. Além disso, foi possível observar que ao mesmo tempo em que as trajetórias estão cada vez mais heterogêneas e singularizadas, questões estruturais – sobretudo ligadas à origem social e ao gênero – aparecem como desafios comuns a serem enfrentados pelas moças e rapazes em seus processos de conquista de autonomia e independência.

Bakgrund: I Sverige vårdas barn och ungdomar med långvarig sjukdom som är i behov av sjukhusvård oftast på enheter speciellt anpassade för unga personer. Vid 18 års ålder flyttas ansvaret för dessa patienter från barnsjukvården till vuxensjukvården. Dessa två vårdformer skiljer sig åt i arbetssätt, framförallt gällande hur familjemedlemmar involveras i vården. I barnsjukvården läggs stort fokus på att involvera och vårda hela familjen, medan de unga vuxna i vuxensjukvården ofta förväntas fungera självständigt och ta fullt ansvar för sin vård. Att vara ung, ha en långvarig sjukdom och genomgå byte av vårdform är faktorer som tillsammans skapar en sårbar situation. Syfte: Att belysa hur unga vuxna med långvarig sjukdom upplever övergången från barnsjukvård till vuxensjukvård. Metod: En integrativ litteraturöversikt baserad på tolv kvalitativa vetenskapliga artiklar. Resultat: Fem teman framkom: känslor och förväntningar i samband med övergången, upplevda hinder för en lyckad övergång, upplevd beredskap inför övergången, upplevda skillnader mellan barn- och vuxensjukvård, samt upplevda förändringar i rollfunktion i samband med övergången.  Diskussion: De mest betydande delarna av resultatet har diskuterats i förhållande till Roys adaptionsmodell, tidigare forskning och till unga vuxnas rättigheter. / Background: In Sweden children and youths with chronic diseases commonly receive hospital care in pediatric clinics. At the age of 18 these patients are transferred to adult care. One main difference between pediatric and adult care is that in pediatric care there is an ambition to involve the whole family in the care of the young person, whereas in adult care the young person is expected to be independent and to take full responsibility for his or her own care. Being young, having a chronic disease and to undergo a transition of care are factors that together make up a vulnerable situation. Aim: To describe the experiences of young adults with a chronic disease transitioning from pediatric to adult healthcare. Method: An integrative literature review based on twelve qualitative scientific articles. Results: Five themes emerged: emotions and expectations associated with the transition, perceived barriers to a successful transition, perceived readiness to transition, perceived differences between pediatric and adult health care, and experiences of changes in role function associated with the transition. Discussion: The main findings were discussed in relation to the Roy adaptation model, previous research and the rights of young adults transitioning to adult care.

Transitioned perinatally HIV-infected patients may be at increased risk for poor outcomes, yet the impact of transition and of transition programs on health are not well understood. This research examined: (1) post-transition mortality, (2) engagement in adult HIV care, (3) transition experiences, and clinical and sociodemographic influences, including transition program exposure. Data were collected from patients who had transitioned from a Florida pediatric clinic to adult HIV care between January 2003 and September 2012. Post-transition mortality and care engagement were assessed in a retrospective analysis of medical record data. Fisher exact and Kruskal-Wallis tests were used for significance testing. Risk ratios (RRs) were calculated to assess strength of associations. Stratified analysis controlled for confounding. Transition experiences were examined in a mixed-methods study, with qualitative data from a computer-assisted survey subjected to thematic analysis. Of 51 transitioned patients, nine (18%) had died by May 2014, five (56%) in the first post-transition year. Of 42 survivors, 33 were eligible; 27 (82%) provided consent. Post-transition mortality was high, particularly in those severely immunosuppressed (CD4 count <100/mm3; RR =6.0, 95% CI =1.88-19.19 [P=.005]) at transition. When controlled for CD4 count, employment was associated with decreased (adjusted RR= 0.19; 95% CI=0.04-0.88 [P=.02]), and high school non-completion with increased (adjusted RR= 3.0; 95% CI=1.37-6.40 [P=.07]) mortality risk. The number of kept HIV appointments decreased from last pre-transition (Median = 5, IQR 4-6) to first post-transition (Median = 2, IQR 1-10; P=.002) year; the proportion of poorly engaged increased from 3% to 35% (P=.006), with no significant changes between first and second post-transition years. Non-Hispanic black and low-income participants were less likely to be regularly engaged in adult HIV care one year post-transition. Transition program exposure did not significantly affect mortality or care engagement. Most of 27 received transition services, but 59% had trouble doing well in adult care. Needs for patient-centered care, with caring, personal patient-provider relationships and accessible HIV care, characterized post-transition experiences. This research suggested that transitioned perinatally HIV-infected young adults are at risk for poor health outcomes. Systematic programs using a socio-ecological framework to include multi-level interventions and post-transition support may improve outcomes.

A l'adolescence, les patients porteurs de maladie chronique depuis l'enfance passent une étape de transition des soins, qui implique la sortie des services pédiatriques et l'entrée dans les services pour adultes. Cette étape pose de nombreux défis et elle est reconnue comme une période à risque de rupture de soins. Pour éviter ces situations, des recommandations internationales et des programmes variés ont été proposées. En France, il n'existe pas de recommandation générique pour la transition. Notre objectif était de proposer un programme générique, pertinent et faisable pour la transition des jeunes porteurs de maladies chroniques variées dans un grand nombre de services en France. Pour cela nous avons employé une méthode mixte : 1) Revue systématique des études interventionnelles au niveau international ; 2) Enquête qualitative des pratiques de transition existantes dans un ensemble de services hospitaliers d'Ile de France ; 3) Enquête de consensus national pour l'élaboration d'un programme de transition pertinent et faisable par la méthode Delphi. Nous avons observé que l'existence de programmes de transition était très dépendante des services : certains ne proposant pratiquement aucune adaptation de la prise en charge, d'autres proposant des programmes très structurés. Globalement, les programmes sont peu spécifiques des pathologies. A l'issue de ce travail de thèse, nous avons proposé un programme générique qui peut être considéré comme un tronc commun. Il pourra notamment permettre aux professionnels impliqués dans le suivi de pathologies peu étudiées dans le contexte de la transition de proposer des pratiques essentielles et minimales aux patients concernés. / At the end of their adolescence, patients with chronic disease since childhood go through a phase of healthcare transition, which involves the discharge of pediatric services and the entry into adult care services. This step poses many challenges and is recognised as a high risk period of discontinuity in care pathway. To avoid these situations, international recommendations and various programs have been proposed. In France, there is no generic recommendation for transition to adult care.The final goal of this thesis work was to propose a generic, relevant and feasible program for the transition of young people with varied chronic diseases into a large number of services in France.For this purpose, we used a mixed method research including: 1) Systematic review of intervention studies at the international level; 2) Qualitative study of existing transition practices in a set of hospital services in the Ile de France region (including Paris and its surroundings); 3) National consensus survey for the development of a relevant and feasible transition program using the Delphi method.We observed that the existence of transition programs was highly dependent on services: some offering almost no adaptation of care during this process, others offering highly structured programs. Overall, the programs were not really specific to pathologies.At the end of this thesis work, we proposed a generic program which can be considered as a common core of transition practices. Among other thing, it will allow professionals involved in the follow-up of pathologies that are under-studied in the context of the transition to propose essential and minimal practices to their patients.

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