Indiana University-Purdue University Indianapolis (IUPUI) / Autoimmune Hepatitis (AIH), an incurable chronic condition of unknown cause where the body attacks its own liver, is a rare disease, with a current diagnosed worldwide prevalence of < 150,000. Inadequately treated, AIH can cause progressive liver damage and ultimately liver failure. A wide variety of symptoms are associated with AIH including severe fatigue, joint pain, depression, anxiety, and insomnia. While precision medicine’s genomics has attempted to shed light on the disease, other non-molecular “-omics” approaches can be taken in studying AIH patients, who often utilize social media to gather information from other patients or care providers to apply to their own AIH disease course. It is proposed that these patient-generated social mediomes can create self-report health records for patients – and facets of their lives - otherwise unreachable by conventional research. In this feasibility study, I examined in an exploratory fashion the social mediome of a large (N > 1000) gathering of AIH patients and caregivers as present on a Facebook Group to determine the potential of mining various types health-related user information. The following types of information were mined, with feasible indicating a reliability of F >= 0.670: 1) Types of health information shared and structures of information sharing (Feasible) 2) Types and directionality of support provided by and to users (Portions feasible) 3) Clinical factors (AIH-related and otherwise) disclosed by users a. Medication intake (Feasible) b. Signs and symptoms (including pain and injury) and diagnosed comorbidities (Portions feasible) c. Results of disease monitoring blood tests (Portions feasible) 4) Contextual (non-clinical; environmental; social) factors disclosed by users (Detection of which type of factor discussed occasionally feasible). The resulting knowledge is required to adequately describe the disease not only clinically, but also environmentally and socially, and will form part of the basis for future disease studies.

No description available.

BACKGROUND: Individuals with serious mental illness face a significant burden of disease, yet experience lower quality care across a range of services (1). Hospital readmission within 30 days of discharge is an important, if imperfect, proxy for quality of care. Factors contributing to readmission are well documented (2–5), yet successful interventions to decrease readmissions have been slow to take shape (6–9). To effectively develop and incorporate evidence-based interventions to reduce 30-day psychiatric readmissions into large, geographically diverse inpatient systems; there is a need to conduct in-depth implementation analyses to better understand the relationship between patient-, hospital-, health system-, and community-level factors and their net impact on readmissions. This research addresses this need. METHODS: Using a modified Consolidated Framework for Implementation Research (CFIR), two state-based case studies were conducted within a large U.S. hospital system. Two hospitals per state were selected-- one with a high and one with a lower readmission rate. We conducted document reviews and semi-structured interviews (N=52) with corporate, clinical and community stakeholders, using the CFIR to identify key themes within each construct. We scored and compared hospitals with lower vs. higher readmission rates. An analysis of EMR data from the hospital system contextualized case study findings. RESULTS: In one state a complex interplay of factors at all levels contributed to readmission rates in both hospitals. In the second, constructs within the inner hospital setting contribute to differences in hospital readmission rates. Facilities with high readmission rates scored lowest among CFIR constructs “Patient Needs and Resources in the Community” and “External Policies and Incentives.” CONCLUSIONS: Ours is the first known study to explore a broad range of factors that influence readmission rates among patients with serious mental illness and a range of comorbidities. Findings from two state-based case studies indicate that readmission rates are determined by multiple, interrelated factors which vary in importance based on hospital and community context and political environment. To be effective, systemic interventions to reduce readmissions must be tailored to the specific context at targeted hospitals.

In just over a decade, exome sequencing and genome sequencing (ES/GS) has transitioned from a research method to an implemented test for patients with suspected rare genetic diseases (RGDs) worldwide, and healthcare systems are challenged to optimize its use within their jurisdictions. This thesis aimed to examine the rapidly evolving scientific evidence base related to ES/GS and how it has been translated into diagnostic care for families with RGDs to inform practice and policy in the future. Guided by the Knowledge-to-Action (KTA) conceptual framework, I designed and conducted three original studies: two aimed to generate evidence related to the KTA concept of Knowledge Creation, and the third studied the Action Cycle. In Article 1, we examined the knowledge base and determined that evidence related to the etiologies of RGDs and analytical processes related to ES/GS testing are progressing at a pace that has diagnostic implications. Next, in Article 2, we examined knowledge refinement and found that one knowledge user, organizations representing genetics professionals, have produced clinical recommendations related to a broad range of topics connected to ES/GS for RGD diagnosis, but the quality of clinical guidance documents is low, overall, and with specific reference to the rigour of the methods developers used. Finally, in Article 3, we studied the Action Cycle and found that implementing publicly-funded ES/GS using a set of clinical eligibility criteria in the Ontario healthcare system resulted in clinically-valid diagnoses for patients that met provincial benchmarks for diagnostic yield. Together, the results of these studies informed eight considerations for optimizing ES/GS testing with implications for healthcare practitioners, patients, guidance developers, payers, and researchers. Importantly, this thesis provides evidence of the necessity for continued evaluation and improved guidance development related to ES/GS to optimize this testing. It offers a foundation for future studies that may investigate knowledge translation into policy and practice in this and other rapidly evolving fields. Ultimately, these findings will enable better diagnostic care for families with RGDs.

Chronic pain is one of the most common health conditions, affecting nearly six million Canadian adults. Despite abundant research on chronic pain in general, there is limited knowledge on how racialized immigrant women experience living with chronic pain and how this relates to their broader social circumstances. The purpose of this qualitative, exploratory study is to understand living with chronic disabling pain as situated in and contextualized by the lived experiences of immigrant women residing in Ottawa, Ontario, and to explore the perspectives of the women's care partners as well as physicians providing care for chronic pain. Semi-structured interviews were conducted with 24 participants. The dissertation is guided by the social determinants of health framework and an intersectional lens. Four interconnected themes from the data analysis have been generated: (1) The trajectory and meaning of pain; (2) Reasons for pain and triggering factors; (3) Pain consequences; and (4) Coping and control. Findings indicate that chronic pain is a subjective, complex, biopsychosocial, and multidimensional phenomenon. Pain is a deeply personal experience linked with meaning. Results also highlight an association between the distribution of the social determinants of health during the life course and pain. Furthermore, the pain has profound, multidimensional impacts on the women and their families, and its treatment is a challenging task for health care professionals. In addition, the findings show that pain is often poorly recognized, underestimated, and inadequately managed. Finally, the results illustrate the perseverance and incredible resilience of the women and their carers. The findings provide several implications for policy, research, and practice.

Background With the impending legalization of recreational cannabis in Canada, it is important to examine the strength of association between cannabis use and common mental health concerns including depression, anxiety, and suicide and the extent to which these associations have changed over time. It is also important to examine the moderating effects of developmental age and biological sex on these associations. Methods This study uses Statistics Canada data from the 2002 and 2012 Canadian Community Health Survey’s Mental Health Component (CCHS-MH) which represent repeated cross-sectional surveys from nationally representative samples of Canadians 15 years of age and older (2002 n=36,984; 2012 n=25,113). Stepwise multivariate analyses were performed using linear regression for psychological distress and binary logistic regression for Major Depressive Episode (MDE) and suicidal thoughts and attempts. Time was accounted for as a binary indicator (2002 vs. 2012) and an interaction term between cannabis use and time was added to all the models. Additional interaction terms were added to the models to test the moderating effects of cannabis frequency, developmental age, and biological sex. Sensitivity analyses were performed to adjust for other substance use and socioeconomic covariates. Weighting and bootstrapping was utilized to present results reflective of the Canadian population. Results Cannabis use was positively associated with emotional problems, and this association strengthened over time, particularly for depression and suicidal thoughts and attempts. These temporal associations were similar across age groups and for males and females, and remained after controlling for other substance use and socioeconomic status. Conclusions Findings provide a baseline assessment of the Canadian population prior to legalization and direction for health promotion and prevention campaigns. Results highlight the need for awareness and regular monitoring of the cooccurrence of cannabis use and emotional problems and offer guidance for future research. / Thesis / Master of Health Sciences (MSc) / Using Statistics Canada data from the 2002 and 2012 Canadian Community Health Survey’s Mental Health Component, this dissertation determines the strength of association between cannabis use and common mental health concerns including depression, anxiety, and suicide and the extent to which these associations have changed over time. Cannabis use was positively associated with emotional problems, and this association strengthened over time, particularly for depression and suicidal thoughts and attempts. These temporal associations were similar across age groups and for males and females, and remained after controlling for other substance use and socioeconomic status. These results add novel insights to the existing literature about the changing relationship between cannabis use and emotional problems over time and potential mechanisms of this change are discussed. Given the impending legalization of recreational cannabis in Canada, clinical and research implications of results are discussed at length.

No description available.

O objeto deste estudo é a relação trabalho/saúde dos enfermeiros do Programa Saúde da Família (PSF), recortado diante do quadro teórico da Saúde do Trabalhador. O objetivo geral foi compreender as características do trabalho dos enfermeiros do PSF da subprefeitura de Vila Prudente – Sapopemba e a relação entre os processos de fortalecimento e de desgaste que neles se expressam. A coleta de dados se realizou através de entrevistas individuais com 16 enfermeiros das Unidades Básicas de Saúde dessa subprefeitura que contam com o PSF. As formas de trabalhar dos enfermeiros entrevistados foram analisadas de acordo com cinco categorias: processo de trabalho, exploração da subjetividade, polivalência, desgaste e fortalecimento, verificando-se, em cada uma delas, os potenciais de fortalecimento e de desgaste gerados. Os resultados são: os enfermeiros reconhecem o espaço territorial ocupado pela população adscrita e enfatizam a precariedade das condições de moradia, configurando-se o objeto de trabalho como uma população carente; o modelo assistencial tem como eixo orientador o planejamento por resultados, voltado à racionalização do trabalho da equipe; o médico é o profissional principal, o trabalho é organizado segundo os preceitos da divisão social e técnica do trabalho de tipo taylorista; os enfermeiros estão intensamente envolvidos com o trabalho, convivendo, de um lado, com a forte expectativa que se tem de suas potencialidades para solucionar os problemas e, de outro, com a impossibilidade de oferecer respostas para os problemas trazidos pela população; os trabalhadores acreditam que para trabalhar no PSF é necessário um perfil especial para o trabalho, o planejamento das atividades próprias dos enfermeiros é sufocado pelos imprevistos do dia-dia; os entrevistados assumem um pouco de tudo e diagnosticam a necessidade de se qualificar para a multifuncionalidade; consideram que devem ter habilidade para resolver todos os problemas do dia a dia. O fortalecimento advém principalmente da relação prazerosa e recompensatória com o objeto/finalidade do trabalho e com o trabalho em si, destacando-se a satisfação com a obtenção de resultados gratificadores, como o vínculo formado com as famílias, muitas vezes localizada nas situações de conquista individual. Com referência ao desgaste, pode-se concluir que: os territórios adscritos pelo PSF integram potenciais de desgaste do trabalhador, impotentes diante da complexidade que implica trabalhar na periferia do tecido social; problemas de alta complexidade trazidos pelos pacientes, bem como o contato direto com o sofrimento e as carências da população, a não adesão ao tratamento ou as reclamações sobre este ou aquele profissional integram as cargas psíquicas; os trabalhadores têm que lidar com situações de precariedade em que a falta de materiais para as atividades diárias representa transtorno no trabalho; a exigência de produtividade, as cobranças, as interrupções constantes nas tarefas em andamento, a realização de atividades que não são atribuições da categoria, os diferentes graus de compromisso e, por vezes, a falta de integração entre as enfermeiras constituem motivo de estresse, angústia e irritação; os enfermeiros se desesperam para dar conta da demanda e chamam a atenção para a necessidade de impor limites. O acolhimento é desgastante uma vez que a demanda é grande e os usuários querem ver seus problemas resolvidos rapidamente; o desgaste se concretiza em muito cansaço físico e mental, levando os enfermeiros a querer apenas descansar e a acumular problemas de saúde como hipertensão, alergias, dores de estômago, além de outros agravos como dormir no volante e sofrer acidentes de carro / The object of this study is nurses’ job/health relation in the Family Health Program (Programa Saúde da Família - PSF), represented within a theoretical framework of Worker’s Health. The general objective was comprehending the characteristics of PSF nurses\' job in Vila Prudente - Sapopemba sub prefecture and the relation between the process of strengthening and debility expressed in them. Data collecting was done through single interviews with 16 nurses who work in Basic Health Units which take part of PSF in this sub prefecture. The interviewed nurses\' ways of working were analyzed according to five categories: working process, subjectivity, polyvalence, debility and strengthening, having, in each of them the debility and strengthening potential fulfilled.. The results are: nurses recognize the area where adscript population live and highlight the precarious living conditions, turning the object of study to be a destitute population; the care pattern is guided by planning focused on results and the rationalization of team work; the doctor is the main worker, job is planned according social division precepts and taylorist working techniques; nurses are intensely involved in the job, handling, on one hand, with the strong expectation of their ability to solve problems and, on the other hand, with the impossibility of finding an answer for people’s problems; workers believe you need to have a special profile for working in order to work at PSF, nurses’ activities planning is canceled because of unforeseen happenings on day-by-day; the interviewees recognize most of it and diagnosed the need of getting themselves prepared for multifunctionality; they believe they must be able to solve all day-by-day problems. Strengthening results from the pleasant and rewarding relation between object/purpose of work and the work itself, highlighting contentment with compensating results gotten, as getting closer to families, which is, most of the time done individually. About debility, we can conclude that: adscript places by PSF are potentially debilitating for workers who are impotent in the face of complexity of working in poor areas; handling problems of great complexity arisen by patients, also, dealing directly to suffering and population’s destitution, patients who don’t undergo treatment or complain about this or that worker contribute to psychological pressure; workers must deal with precarious situations in which lack of material for daily activities is a trouble at work; production demand, pressing necessity, constant discontinuity of tasks in progress, developing activities they are not designated to, different sense of commitment and, at times, lack of interaction among nurses cause stress, agony and exacerbation; nurses get desperate to do what is in demand and it draws attention to the need of imposing limits. Approving reception is debilitating, once demand is great and users want their problems to be quickly solved; debility causes physical and mental weakness, then nurses just want to rest and they end up having several health problems such as hypertension, allergies, stomachaches, besides other injuries such as sleeping while driving, causing car accidents

Submitted by Rosivalda Pereira (mrs.pereira@ufma.br) on 2017-10-31T17:39:20Z No. of bitstreams: 1 DaniellePintoLima.pdf: 4421246 bytes, checksum: 8f5854008c9b4538576f57e58e82c249 (MD5) / Made available in DSpace on 2017-10-31T17:39:20Z (GMT). No. of bitstreams: 1 DaniellePintoLima.pdf: 4421246 bytes, checksum: 8f5854008c9b4538576f57e58e82c249 (MD5) Previous issue date: 2015-04-30 / Coordenação de Aperfeiçoamento de Pessoal de Nível Superior / This is a qualitative research with an ethnographic approach that aims to study childbearing and giving birth among the Guajajaras in the Arame complex area, in Maranhão State. For this purpose, this study sought to describe the main sociocultural practices and the traditional indigenous care patterns, as well as the therapeutic itinerary of the indigenous pregnant, reports the influence of western medical practices in the universe of Guajajaras women, and identifies the problem-situations of these women in relation to the theme studied. The results show that the process of childbearing and giving birth among the Guajajaras involves sociocultural practices and unique traditional care, with the menarche and the “moqueado feast” as the beginning of this process. The pregnancy is a period of no rituals or specific care. Child birth that in less than three decades ago, in its great majority, was performed in the village, in squatting position, surrounded by people who the pregnant trusted, nowadays is performed mainly in hospitals with the pregnant alone or just with restricted company, in a lithotomy position, and having medical or surgical interventions. In the post-natal period special care is experienced and a series of food and physical restriction happens in 30 to 40 days immediately after the postpartum. The therapeutic itinerary of these women is complex and influenced by many factors like: age, prior personal and/or family experience, difficulties in transportation and communication, precarity in health assistance t o the villages, as well as the incentive to the hospital birth given by the professionals. Among the factors that appear to influence most in the changing occurred in the process of childbearing and giving birth Guajajara over time are: the lengthy time of coexistence with the “non-indigenous” population, the evangelization of the population, the ethnocentric practices of the healthy system, and the apparently fragility of FUNAI’s performance. Even with the use of biomedicine knowledge at some time during the pregnant and puerperal cycle, the majority of the Guajajaras is able to articulate their traditional knowledge with the biomedical technicians. It was concluded that, in one hand the inclusion of new therapeutic resources in this process brought possib le benefits, as the capacity of resolution, and the search for minimization of health risks; on the other hand, it has created risks and damage like the childbearing medicalization. This research reveals an urgent necessity to revise the assistance given to this population in order to provide a secure service, of quality, and that not only consider the sociocultural aspects and the parties involved, but also that the two knowledges can be used harmonically so that the provision of health services can be offered in a decent way. / Trata-se de uma pesquisa qualitativa com abordagens etnográficas, que objetiva estudar o processo de gestar e parir entre os Guajajara da área de abrangência do polo base de Arame, no Estado do Maranhão. Para tanto, buscou-se descrever as principais práticas socioculturais e de cuidados tradicionais indígenas, bem como o itinerário terapêutico das gestantes indígenas e relatar a influência das práticas da medicina ocidental no universo das mulheres Guajajara, e identificar as situações-problema das mesmas em relação ao tema estudado. Os resultados apontam que o processo de gestar e parir entre os Guajajara envolve práticas socioculturais e de cuidados tradicionais singulares, com a menarca e a festa do moqueado marcando o início deste processo. A gravidez não apresenta rituais ou cuidados específicos. Os partos, que há menos de três décadas, em sua maioria, eram realizados na aldeia, de cócoras, cercado de pessoas da confiança da gestante, atualmente, ocorrem majoritariamente no hospital, com a gestante sozinha ou com companhia restrita, em posição de litotomia e com utilização de intervenções medicamentosas ou cirúrgicas. No pós-parto são vivenciados rituais específicos e uma série de restrições alimentares e físicas, durante os 30 a 40 dias de resguardo. O itinerário terapêutico destas mulheres é complexo e influenciado por múltiplos fatores como: idade, experiência anterior pessoal e/ou familiar, dificuldades de transporte e comunicação, precariedades na assistência à saúde nas aldeias, assim como o estímulo ao parto hospitalar dados pelos profissionais. Dentre os fatores que aparentam mais influenciar na mudança ocorrida no processo de gestar e parir Guajajajara, ao longo do tempo está: o extenso tempo de convivência com a população “não indígena”, a evangelização da população, a atuação etnocêntrica do sistema de saúde e a aparente fragilidade da atuação da FUNAI. Mesmo se utilizando os conhecimentos da biomedicina, em algum momento do período gravídico puerperal, a maioria dos Guajajara consegue articular seus saberes tradicionais com os biomédicos. Conclui-se que, se por um lado, a inclusão de novos recursos terapêuticos neste processo trouxe possíveis benefícios, como a capacidade resolutiva, e a busca pela minimização de riscos à saúde, por outro, gerou novos riscos e danos como a medicalização do parto. Esta pesquisa revela uma necessidade urgente de rever a assistência prestada a esta população de modo que seja prestado um serviço seguro, de qualidade e que possa não apenas considerar os aspectos socioculturais e atores envolvidos, mas que de fato os dois saberes possam ser usados harmonicamente para a oferta de serviços de saúde dignos.

Varje år drabbas 4000 personer av malignt melanom i Sverige. Prognosen är god vid tidig upptäckt. Ändå dör ca 20 % av de som drabbas. Ett förbättringsarbete initierades för att utveckla vårdprocesser för dessa patienter. Denna studie har syftat till att utveckla kunskaper om situationsbaserade erfarenheter av vad processen i förbättringsarbetet har inneburit i relation till sjuksköterskors, läkares och medicinska sekreterares egna insatser för projektmålen och en personcentrerad vård. För studien av förbättringsarbetet har Critical Incident Technique (CIT) används som metod. 84 situationer samlades in från projektdeltagare genom korta återkommande intervjuer under projekttiden. Resultatet visar att deltagarna befinner sig i situationer av ambassadörskap, självrannsakan och fristad. Situationer av ambassadörskap är viktiga för projektets riktning framåt men dessa situationer är inte oberoende av situationer av självrannsakan och situationer av ”fristad”. Det är snarare relationen dem emellan som har en viktig dynamisk kraft. Slutsatsen i studien av förbättringsarbetet är att när deltagare i ett förbättringsarbete får möjlighet att ändra på logistik och struktur som bygger på ”stuprörstänk”, professionsorientering och funktion så får det positiva konsekvenser för ett personcentrerat arbetssätt, i arbete med patienter och i arbete med projekt. / Every year 4,000 persons are diagnosed with malignant melanoma in Sweden. The prognosis is good if it is detected early. Nevertheless, about 20% of those who are diagnosed die of the disease. An improvement project was initiated for developing care processes for these patients at a local clinic in central Sweden. This study aimed to describe the knowledge derived from participants in the project regarding their own situated efforts to achieve a person-centered care for these patients. Critical Incident Technique was used as a method. 84 incidents were gathered from the participants through recurrent interviews during the project process. The results show that participants find themselves in situations of being ambassadors for the project where everything flows forward in the project, being in situations of self-examination and doubt about own achievements in the project and finally being in situations of sanctuary as a temporary moral refuge and stress release concerning the project. Situations of ambassadorship are important for the project's direction forward toward the project goal but these situations are not independent of situations of self-examination and situations of sanctuary. The relation between these situations has an important dynamic force that need to be further explored.