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This study explores mental health advocacy among individuals with psychiatric disabilities in the New York State (NYS) adult home system. This system has garnered longstanding public concern over the unsafe and unjust conditions in which its residents live. In New York City (NYC) a unique organization, Adult Home Advocates (AHA), supports a group of residents (called peer advocates) to advocate for their rights. I integrate literature on health and mental health advocacy and movements with the concept of mental health recovery to consider how AHA participation may impact recovery for peer advocates and others living in the adult home system. I use Brown et al.'s (2010) policy ethnography approach to study sociolegal, organizational, and individual contexts in which peer advocates work and live. From May 2013 to August 2017 I conducted peer advocate (n=36) interviews and member checks, participant observations (n=154), archival document research, and initiated policy advocacy work. This study is guided by four research questions: 1) How may the sociolegal and organizational environments - - including an unfolding shift in the sociolegal environment - - influence mental health advocacy among individuals with psychiatric disabilities? (Chapter 3, p.41) 2) How may individual characteristics - - specifically, mental health recovery characteristics - - influence mental health advocacy among individuals with psychiatric disabilities? (Chapter 4, p.90) 3) What are the motivations for mental health advocacy among individuals with psychiatric disabilities? (Chapter 5, p.134) 4) What are the impacts of mental health advocacy among individuals with psychiatric disabilities? (Chapter 6, p.182) I use conventional content analysis (Hsieh & Shannon, 2005), with mental health recovery as a sensitizing concept, to organize and analyze data. I report on findings from the sociolegal to individual levels. First, the sociolegal environment includes patterns of unsafe, unhealthy, and socially isolating conditions within adult homes; even as a legal settlement (O’Toole v. Cuomo) helps residents move out, troubling implementation practices perpetuate these unjust conditions. AHA enters this environment with a commitment to help adult home residents advocate for themselves, though it is a small organization in terms of budget, staffing, and scope. Its size is both a key strength and limitation, as it furthers its mission-driven work, yet impedes training and support for peer advocates. I also report on findings specific to peer advocate participants (n=36). I use six mental health recovery domains - - including a sociolegal domain I develop to explore justice and rights issues - - to describe recovery as heterogeneous and dynamic across both individual domains and individual participants. Participants’ motivations for advocacy are also heterogeneous, with three types salient: 1) self-advocacy, 2) purpose, and 3) identity. Further, these motivations lead to four types of advocacy activities: 1) self-advocacy, 2) self-help, 3) advocate leader, and 4) advocate activist. Finally, I find that advocacy involvement does impact participants, both positively and negatively. I return to the six recovery domains used above to discuss how mental health advocacy brings into relief potential means of furthering mental health recovery for individuals with psychiatric disabilities.

Telehealth has great potential for providing timely and comprehensive care to community-dwelling older adults while reducing their barriers to healthcare access. The purpose of this study is to understand how older adults with chronic diseases access healthcare services in their community and evaluate the impact of telehealth on access to care from a self-reported survey conducted in British Columbia. About a quarter of older adult participants reported barriers to healthcare access in their community. Participants frequently reported financial barriers to healthcare access regardless of telehealth use. In addition, telehealth users more frequently reported a lack of necessary healthcare services in their community and physical barriers to access to care. Although the findings did not demonstrate a significant difference in access to care between telehealth users and nonusers, telehealth was identified as a meaningful care delivery tool for older adults with barriers to healthcare access. Further efforts are needed to implement a valid tool for ongoing evaluation and optimization of telehealth and integrate telehealth into clinical and community programs to reduce physical and financial barriers to healthcare access for community-dwelling older adults with chronic illnesses. / Graduate

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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.

Technology development in the sub-field of older adult care has always been on the back-burner compared to other healthcare areas. But with increasing life expectancy, this is poised to change. With the increasing older adult population, the current older adult care facilities and personnel are struggling to keep up with demand. Research conducted in the Netherlands [1] found 33,000 older adults were awaiting admission into a home for the elderly showing that demand far exceeds availability. This huge demand for older adult care has resulted in a decrease in the quality of care being provided. A recent study involving older adults aged 65 and above [2] compared the quality of care given to older adults in nursing homes in the UK and found it to be inadequate. While it is true that giant strides have been made in the field of personal health and fitness [3], we have to acknowledge that these technologies have not found widespread adoption in the elderly communities for a number of reasons which include lack of education, cognitive impediments, low-income and techno-phobia [4]. We believe that older adult care technologies should be approached from a different perspective in order to maximize outcomes. Inventions in the health care space are a moving target and a significant degree of technical aptitude and interest is required to keep up with these changes. My research work will be focused on developing a distributed system infrastructure that will enable large-scale monitoring of vital signals and early detection of emergency situations in nursing homes and assisted living communities. This new approach will increase automation in nursing homes leading to a reduction in running cost and an increase in capacity

No / Reducing hospital admissions of older adults with ambulatory care sensitive conditions is a government priority. Yet relatively little is known about current health care practice in UK nursing homes. We studied approaches to developing understanding of current health care practices in UK nursing homes using a methodology of data-extraction from retrospective care home records combined with key informant interviews. Older adults with an exacerbation of one of 4 ambulatory sensitive conditions that warranted decision making around admission to hospital or continued primary-care led nursing home care were 178 identified and recruited for participation. Care home records were examined using a proforma for data-extraction. These data were combined with care-plans to construct a brief care narrative. The relevant progress notes/daily record of care-given at the time of the decision making were used to construct a visual time-line of events. For those participants who consented, the key multiple stake holders in care were identified: non-professional carers, care-home workers, caring professionals and care-managers. These data were used to generate supplementary trigger questions and topics for semi-structured interviews. This enabled questions raised by the care record to be identified and explored. Implications of the findings for practice and research will be discussed. / NIHR