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.

Esta tese retoma a problemática da transição para a vida adulta de uma perspectiva qualitativa e procura contribuir com uma compreensão sociológica desse processo no contexto do município de São Paulo contemporâneo. A partir de discussões em grupo focal e entrevistas biográficas com jovens adultos, de ambos os sexos e diferentes origens sociais, a pesquisa explorou representações sobre adolescência, juventude e idade adulta, modalidades de construção de identidades sociais e experiências pessoais diversas que nos informam acerca dos significados, valores, expectativas e auto-imagens associadas ao adulto hoje, num contexto de crescentes exigências quanto à escolaridade e qualificação profissional e intensa competitividade no mercado de trabalho. O estudo teve entre seus principais objetivos analisar diferenças de classe, gênero e raça, bem como a maior ou menor capacidade dos entrevistados de estabelecer perspectivas para o futuro e concretizar objetivos. Também procurou identificar as percepções dos sujeitos acerca de suas próprias experiências de transição, inclusive em comparação com os percursos biográficos de seus pais. As discussões e relatos colhidos apontaram a centralidade da família de origem como mediadora e/ou facilitadora do processo de transição e a importância dos valores na construção de projetos para a vida adulta. A análise também permitiu estabelecer de que forma fatores sociais importantes como o gênero, a origem socioeconômica e a cor da pele interferem nos percursos biográficos a partir da reconstrução de narrativas particulares, que permitem perceber, de uma perspectiva diacrônica, como fatores estruturantes, orientações e estratégias individuais se articulam para constituir trajetórias de vida. / The present thesis reappraises the issue of transitions into adulthood from a qualitative perspective, in an attempt to contribute with a sociological comprehension of this process in the contemporary context of São Paulo city. Based on focus groups discussions and biographic interviews with young adults, both men and women from different social origins, the research explored representations of adolescence, youth and adulthood, various modalities of social identity construction and diversified personal experiences that brought forth information on the meanings, values, expectations and self-images associated to being an adult today, within a context of both increasing demand for education and professional qualifications, and intense labor market competition. The study aimed to analyze class, gender and race differences, as well as the interviewees’ capabilities to establish perspectives for the future and accomplish goals. It also sought to identify subjects’ perceptions on their own transition experiences, together with their comparisons to their parents’ biographical courses. The discussions and life stories collected indicated the centrality of young people’s families as mediators and/or facilitators of the transition process, as well as the importance of values in the elaboration of projects for adult life. Based on a diachronic perspective of the informants’ particular narratives, the analysis allowed us to understand how important structural factors such as gender, social origin and skin color interlink with individual orientations and strategies to shape life trajectories.

Esta tese retoma a problemática da transição para a vida adulta de uma perspectiva qualitativa e procura contribuir com uma compreensão sociológica desse processo no contexto do município de São Paulo contemporâneo. A partir de discussões em grupo focal e entrevistas biográficas com jovens adultos, de ambos os sexos e diferentes origens sociais, a pesquisa explorou representações sobre adolescência, juventude e idade adulta, modalidades de construção de identidades sociais e experiências pessoais diversas que nos informam acerca dos significados, valores, expectativas e auto-imagens associadas ao adulto hoje, num contexto de crescentes exigências quanto à escolaridade e qualificação profissional e intensa competitividade no mercado de trabalho. O estudo teve entre seus principais objetivos analisar diferenças de classe, gênero e raça, bem como a maior ou menor capacidade dos entrevistados de estabelecer perspectivas para o futuro e concretizar objetivos. Também procurou identificar as percepções dos sujeitos acerca de suas próprias experiências de transição, inclusive em comparação com os percursos biográficos de seus pais. As discussões e relatos colhidos apontaram a centralidade da família de origem como mediadora e/ou facilitadora do processo de transição e a importância dos valores na construção de projetos para a vida adulta. A análise também permitiu estabelecer de que forma fatores sociais importantes como o gênero, a origem socioeconômica e a cor da pele interferem nos percursos biográficos a partir da reconstrução de narrativas particulares, que permitem perceber, de uma perspectiva diacrônica, como fatores estruturantes, orientações e estratégias individuais se articulam para constituir trajetórias de vida. / The present thesis reappraises the issue of transitions into adulthood from a qualitative perspective, in an attempt to contribute with a sociological comprehension of this process in the contemporary context of São Paulo city. Based on focus groups discussions and biographic interviews with young adults, both men and women from different social origins, the research explored representations of adolescence, youth and adulthood, various modalities of social identity construction and diversified personal experiences that brought forth information on the meanings, values, expectations and self-images associated to being an adult today, within a context of both increasing demand for education and professional qualifications, and intense labor market competition. The study aimed to analyze class, gender and race differences, as well as the interviewees’ capabilities to establish perspectives for the future and accomplish goals. It also sought to identify subjects’ perceptions on their own transition experiences, together with their comparisons to their parents’ biographical courses. The discussions and life stories collected indicated the centrality of young people’s families as mediators and/or facilitators of the transition process, as well as the importance of values in the elaboration of projects for adult life. Based on a diachronic perspective of the informants’ particular narratives, the analysis allowed us to understand how important structural factors such as gender, social origin and skin color interlink with individual orientations and strategies to shape life trajectories.

Successful formation of a self-chosen, purposeful identity in personal, social, educational and vocational areas is a primary task for emerging adults, with failure to do so often resulting in cycles of substance use, unemployment, and delinquent/criminal behavior. The purpose of this quantitative study was to examine relationships between vocational identity, substance use, and criminal thinking within the population of emerging adults. The expectancy value theory of motivation, which states that identity may be a motivational construct between self-efficacy and subjective self-values, provided the foundation for the study. The online inventory platform PsychData was used to garner data from a sample of 78 emerging adults measuring vocational identity (using the Vocational Identity Status Assessment [VISA]), substance use (using the CAGE-AID questionnaire), and criminal thinking (using the General Criminal Thinking-GCT scale of the Psychological Inventory of Criminal Thinking Styles). A bivariate correlational analysis using SPSS allowed for comparison of the 6 vocational identity statuses of Achieved, Searching Moratorium, Moratorium, Foreclosed, Diffused, and Undifferentiated, against the CAGE-AID scores and the GCT scores for possible relationships. The study did not result in significant correlations between variables; however, poststudy analysis revealed that the Diffused level of vocational identity, which is generally associated with the most negative life patterns, was strongly reflected in the responses of 25-year-old participants. Further research on the significance of vocational identity among older emerging adults may serve both the individual and society through encouraging successful transition to stable and healthy adult roles.

This study sheds insight into the unique, daily struggles of individuals with Asperger Syndrome (AS) as they transition into adulthood. The majority of research available regarding individuals diagnosed with AS focuses on childhood experiences. What happens when these individuals age out of high school? What are their experiences with becoming independent, successful adults? This study elicited qualitative data concerned with individual experience from seven participants between the ages of eighteen and thirty years old. Data were collected through three face-to-face and four email interviews. Data were analyzed to identify specific challenges of adult life. All participants expressed challenges in social interaction, as well as successfully coping with stress in the areas of employment, education, and relationships. Results of this study offer a deeper understanding of the individual challenges individuals experience in young adult life.

Au Mexique, la fécondité adolescente est présentée aujourd’hui comme un des problèmes sociaux majeurs. Cette thèse souhaite contribuer à la compréhension de l’évolution des dynamiques familiales de femmes devenues mères à l’adolescence dans un contexte urbain en pleine mutation. Elle compare trois cohortes de femmes nées dans la seconde moitié du XXe siècle, période de profondes transformations sociodémographiques au Mexique (baisse de la fécondité, augmentation du niveau scolaire des filles, entrée des femmes sur le marché du travail, etc.). Nous avons opté pour une approche longitudinale afin de saisir comment cette fécondité précoce s’inscrit plus largement dans la transition à l’âge adulte. À partir de la naissance du premier enfant, nous analysons la trajectoire familiale des femmes, selon trois axes majeurs : la composition du ménage, l’histoire conjugale et le parcours reproductif. Obtenus sur la base des données de l’enquête biographique rétrospective EDER (2011) et d’entretiens semi-directifs menés dans la ville de Tijuana, les résultats révèlent que la « précocité » du processus de formation familiale en milieu urbain ne renvoie pas nécessairement à des trajectoires familiales « spécifiques ». Chez ces mères adolescentes, dans un contexte où les rapports de genre sont fortement inégalitaires et où les normes sociales régissant l’accueil du premier enfant sont strictes, les relations intergénérationnelles ainsi que la nature des relations avec le conjoint auront une influence sur le devenir de leur trajectoire familiale. / In Mexico, adolescent fertility is presented today as one of the major social problems. This thesis aims to contribute to the understanding of the evolution of the family dynamics of women who became mothers during adolescence in a changing urban context. It compares three generations of women born in the second half of the twentieth century, a period of profound socio-demographic changes in Mexico (fertility decline, the increase of women education level, entry of women into the labor market, etc.). We have chosen a longitudinal approach to understand how this early fertility fits into the transition to adulthood. From the birth of the first child, we analyze the family trajectory of women, according to three major axes : the composition of the household, the marital history and the reproductive path. Obtained on the basis of data from the EDER retrospective biographical survey (2011) and semi-structured interviews in the city of Tijuana, the results reveal that the "precocity" of the process of family formation in urban areas does not necessarily means "specific" family trajectories. For those adolescent mothers, in a context where gender relations are highly unequal and social norms governing the settling-in the new-born child are strict, intergenerational relationships and the nature of relationships with the spouse will have an influence on the future of the family life course.

Young adulthood is a critical period during which advances in educational, occupational, and financial adjustment set the stage for lifelong economic capital, health, and well-being. Greater understanding of the factors that contribute to positive and negative adjustment in young adulthood is warranted. This longitudinal study highlights the important role of parents by investigating (1) changes in the emotional quality of parent-youth relationships during adolescence and the transition to adulthood, (2) whether such changes relate to young adults’ adjustment outcomes in three age-salient domains, and (3) whether the effects of changes in parental relationships are associated with young adults’ adjustment outcomes through the intervening effects of mental health symptoms. Specifically, I examined direct and indirect associations between changes in mother and father emotional support (ES) and psychological control (PC) and young adults’ educational, occupational, and financial outcomes through youths’ depressive and anxiety symptoms. Sex and SES group differences were also examined. Participants were 545 youth from a medium-sized Canadian city. They were assessed at four time points over a six-year period. All analyses were conducted separately by two developmental transition groups: The young adult transition group included 240 participants who were initially 18 to 21 years old, and the adolescent transition group included 305 participants who were 14 to 17 years old at the initial assessment. Measures of parental ES and PC, youth’s mental health symptoms, and youth’s adjustment were obtained through self-reports. Multi-level modeling analyses showed that mother and father ES increased over time for both transition groups. Declines in mother and father PC were significantly greater for the young adult transition group. Results from latent growth curve mediation analyses revealed that parental ES was linked to positive and negative youth adjustment directly and indirectly through depressive symptoms. Findings also highlight the negative effects of parental PC on youth’s adjustment outcomes directly and also indirectly through changes in youth’s depressive and anxiety symptoms. Differences for mothers and fathers, males and females, and lower and higher SES groups are discussed. Overall, the quality of parent-youth relationships changes during the transition to adulthood, and such changes are important factors in understanding young adults’ educational, occupational, and financial adjustment. / Graduate / 0620

Charles University in Prague Faculty of Philosophy and Arts Department of Sociology Study Program: Sociology Family and work arrangements in the context of social changes in the Czech Republic after 1989. Transformations in family and professional starts Mgr. Jana Chaloupková Supervisor: PhDr. Dana Hamplová, Ph.D. 2011 Dissertation abstract This dissertation explores the changes in professional and family starts of young men and women in the Czech Republic. It compares an early family and work trajectories of persons, who reached adulthood in 1990s and those theirs family and work starts occurred before 1989. Theoretical and methodological background of this study draws upon a holistic approach to the life-course study and a sequence analysis. The empirical analyses focus on three domains: 1) a normative context of family and work starts, 2) the development of variability of family and work starts, 3) analysis of similarity (types) of early family and work trajectories. Using ISSP 2002 data, the analysis deals with a sequence of family and work statuses held between 18 and 35 years of age. The analyses of the normative context show that in most European countries social adulthood is more strongly linked to becoming financially independent than to starting a family. In the Czech society dominates a norm of...

This dissertation concerns the family context of self-determination in adults with intellectual disabilities (ID) during life transitions. Although self-determination is interpreted in different ways in different disciplines, the construct is frequently used to describe the attitudes and behaviours that allow people to feel autonomous and causal in their lives. Research on self-determination in adolescents and adults with ID has commonly occurred in community and special education sectors, with an emphasis on arranging supports for people with ID to develop component self-determination skills, like choice making, problem solving, and goal setting. From the perspective of organismic-dialectical theories, people develop and express self-determination through relationships and person-environment interactions at multiple system levels. Further research on the way family interactions and supports influence the self-determination of adults with ID is important. To address this need, this dissertation includes a qualitative study presented in two manuscripts and a quantitative study presented in one manuscript. The qualitative study explored processes and challenges in the family system during significant life transitions with an adult family member with ID. Families participated in semi-structured interviews and ethnographic observations of daily activities every three to four months for one year. Manuscript 1 concerns the influence of family processes on the self-determination of two young adults with ID as they attained adult roles in the community. Parents were observed to model goal setting, encourage choice making, and scaffold new skills, which helped the young adults with ID to experience autonomous motivation in their transitions. Parents reported feeling unsure of the best way to promote their adult child’s independence while ensuring his or her safety. They tried to resolve this dilemma with open and honest communication. Most interestingly, families collaborated in choice making to the extent that every family member perceived autonomy in transition planning and implementation. Manuscript 2 concerns the influence of transition processes and challenges on the quality of life and resilience of four families with an adult family member with ID. Although families reported different transition types, they progressed through similar transition stages. They invested in quality of life and self-determination as a foundation, considered future support needs, pre-planned and actively planned transitions, implemented transitions, adjusted to new roles and routines, and reflected upon their growth. Although all families experienced challenges during their transitions, two families entered a state of crisis when they did not receive mental health and residential supports. Findings highlight that transitions are lifelong processes in the family system, and risk and protective factors at multiple system levels affect resilience and self-determination. The quantitative study, presented in Manuscript 3, considers that the family system functions within broader socioecological environments that include formal services for adults with ID. Community participation supports provide opportunities to develop self-determination in recreational, educational, and vocational activities. In a cohort of families requesting community participation supports, the vast majority of parents endorsed the expectation that this service would improve choice-making outcomes for their adult child with ID. Preliminary results suggest that the gender and prior choice-making experience of the adult with ID may be associated with the odds of parents endorsing this expectation. The General Discussion integrates the primary findings from each manuscript within a conceptual framework informed by self-determination theory, family systems theory, and family resilience models. This dissertation has theoretical implications for the way the self-determination construct is understood and applied in research with families with a family member with ID. Further, this dissertation reveals practical implications for supporting families with a family member with ID during important life transitions.

CoordenaÃÃo de AperfeÃoamento de Pessoal de NÃvel Superior / Nesta pesquisa intento trazer uma problematizaÃÃo sobre os sentidos de transiÃÃo no ensino mÃdio para os jovens. Trata-se de uma discussÃo que tem como campo duas escolas pÃblicas, uma de ensino mÃdio profissionalizante e outra de ensino mÃdio regular, localizadas na cidade de Fortaleza-Ce. A imagem de juventude como um processo de diferentes transiÃÃes à uma ideia partilhada por autores como Pais (2009) e Marques (2003), ao acentuarem que, na passagem para a chamada idade adulta, continua a predominar a valorizaÃÃo de determinados marcadores como a obtenÃÃo do primeiro emprego, o casamento e o nascimento dos filhos, embora tais rituais (Goffman 2011, McLaren, 1991), nas sociedades contemporÃneas, nÃo se apresentem sob a lÃgica do tempo linear. Um dos principais espaÃos de socializaÃÃo e campo no qual se à legitimado tal rito de passagem à a escola, embora atualmente se reconheÃa a existÃncia de uma crise das instituiÃÃes modernas ou uma âdesinstitucionalizaÃÃo do socialâ (Abad, 2003, Dubet, 2007). Esta investigaÃÃo intenta captar os sentidos atribuÃdos pelos jovens Ãs transiÃÃes experimentadas no ensino mÃdio visando compreender a relaÃÃo existente entre esse nÃvel de ensino e seus projetos de futuro. AtravÃs de observaÃÃes, anÃlises de perfis, conversas em grupo, entrevistas individuais e notas etnogrÃficas de campo, realizadas nas duas escolas entre 2014 e 2015, bem como por meio do registro das trajetÃrias de escolarizaÃÃo de dois jovens interlocutores, procuro analisar aspectos relativos à suas configuraÃÃes familiares, lugar social, percepÃÃes sobre a escola, o ENEM, o estÃgio ao final do ensino mÃdio profissionalizante, a fruiÃÃo do tempo e os deslocamentos pela cidade. Cotejando os achados de campo com teorias sÃcias antropolÃgicas, lanÃo mÃo de conceitos como âcapital culturalâ (Bourdieu, 2015, Lahire, 1995), âtransiÃÃes para a vida adultaâ (Pais, 2003, Guerreiro e Abrantes, 2005), âdesinstitucionalizaÃÃo do socialâ (Abad, 2003, Dubet, 2007) âcampo de possibilidadesâ e âprojetoâ (Velho, 1994), alÃm de consideraÃÃes significativas de autoras como SpÃsito (2005), Dayrell (1996, 2007, 2009), Abramo (1994) e DiÃgenes (1998). / This research brings a problematization about the âsense of transitionâ in the high school for the young students. The field of this discussion are two public schools from the city of Fortaleza, Brazil. One of them is from vocational education system and the other from the âregularâ high school. The image of the youth as a process with differents types of transition is present in authors like Pais (2009) and Marques (2003). These researchers stress that, in the transition to adulthood, predominates the valuation of certain key-moments as the fist job, the marriage and children, although these rituals (Goffman 2011,McLaren, 1991) do not show a linear time logic in contemporary societies. One of the main spaces of socialisation for this rite of passage is the school, although it is possible to recognize a crisis of modern institutions, or a âdeinstitutionalizationâ. (Abad, 2003, Dubet, 2007). This investigation aims to recognize the different senses that the young students give to the transitions experienced in high school, trying to understand the links between this level of education and their projects of future. This research involved observation, profile analysis, group conversations, ethnographic field notes and interviews, carried out in the two schools in 2014 and 2015, in addition to the narrative of tragectories of schooling of two students. I try to analyze their familiar configurations, social position, sense about school, ENEM (National Exam of High School), the final stage of vocational education, enjoyment of time and trips around the city. Relacting the empiric material with sociological and anthpological theories, I reach out concepts as âcultural capitalâ (Bourdieu, 2015, Lahire, 1995), âtransitions to adulthoodâ (Pais, 2003, Guerreiro e Abrantes, 2005), âdesinstitucionalizationâ (Abad, 2003, Dubet, 2007) âfield of possibilitiesâ e âprojectâ (Velho, 1994), and also relevant contributions of authors like SpÃsito (2005), Dayrell (1996, 2007, 2009), Abramo (1994) and DiÃgenes (1998). Key-words: Youth, high school, tragectories of schooling, projects of future, transition to adulthood.