Parents of children with autism shoulder substantial responsibility for navigating intervention to address autism-related concerns, and face conditions of high uncertainty and stress to do so. There is a lack of holistic research explaining how parents cope and respond to the complexity and obstacles that characterize their situation as they navigate multiple forms of intervention across multiple systems of care. The purpose of this qualitative study was to develop a social psychological explanation in the form of a substantive theory of how Ontario parents of children with autism navigate intervention under complex informational conditions. I used grounded theory methods, a constructivist approach and symbolic interactionist analytic framework for this research. The findings are primarily based on 45 in-depth (90-minute) interviews with 32 mothers from different urban and rural Ontario regions (fathers participated in 3 cases), and 9 professionals with expertise supporting parents. Documents were also analyzed. The central process of navigating intervention, labeled making your own way, consists of adjusting to the need to navigate intervention, in which parents construct the meanings that prepare and motivate them for taking action to navigate intervention. Adjusting consists of 4 interdependent sub-processes that together explain parents’ action: defining concerns, informing the self, seeing what is involved, and emotionally adapting. I portray the central process according to three overlapping heuristic stages: beginning the autism journey, handling transitions, and easing off. Many parents develop a strong sense of urgency to which they can respond by going into high gear, expending substantial personal resources sometimes at unsustainable rates in the pursuit of intervention. The findings have implications for supporting parents to improve outcomes including parent stress. The central process of making your own way is generically transferrable to other healthcare consumer populations. Other conceptual elements have theoretical relevance for consumer-centered areas of health research. / Thesis / Doctor of Philosophy (PhD) / Parents of children with autism shoulder significant responsibility for navigating many varying services and treatments (intervention) to address autism-related concerns, and experience great uncertainty and stress as they do so. There is a lack of research explaining how these parents respond to the complexity and obstacles they encounter as they navigate intervention. Using qualitative research methods, I interviewed 32 urban and rural Ontario parents (mostly mothers) and 9 professionals with expertise supporting parents to understand in detail how parents respond to their situation by making their own way to intervention. The resulting analytic findings have implications for improving support for parents of children with autism to reduce stress in their lives and improve other outcomes. The theory developed is also relevant for understanding how other healthcare consumer populations navigate intervention, and contributes to general knowledge in different consumer-centered areas of health research.

<p>Introduction: Globally, more than 200 million patients undergo major non-cardiac surgery each year and more than 10 million patients will be exposed to postoperative myocardial ischemia, a condition strongly associated with 30-day mortality. The majority of these events go undetected without postoperative Troponin screening. Methods: We conducted a model-based cost-consequence analysis comparing a postoperative Troponin T screening vs. standard care in patients undergoing noncardiac surgery. In a first model, we evaluated the incremental number of detected perioperative myocardial infarctions and the incremental costs. A second model assessed the effect of the screening and consequent treatment on 1-year survival and the related cost. Model inputs based on the Vascular events In Non-cardiac Surgery patIents cOhort evaluatioN (VISION) Study, a large international cohort. We run probability sensitivity analyses with 5,000 iterations. We conducted extensive sensitivity analyses.</p> <p>Results: The cost to avoid missing an event amounted to CAD$ 5,184 for PMI and CAD$ 2,983 for isolated Troponin T. The cost-effectiveness of the postoperative Troponin screening was higher in patients’ subgroups at higher risk for PMI, e.g. patients undergoing urgent surgery. The incremental costs at 1 year of a postoperative PMI screening by 4 Troponin T measurements were CAD$ 169.20 per screened patient. The cost to prevent a death at 1 year amounted to CAD$ 96,314; however, there was relevant model uncertainty associated with the efficacy of the treatment in the 1-year model.</p> <p>Conclusion: Based on the estimated incremental cost per health gain, the implementation of a postoperative Troponin T screening after noncardiac surgery seems appealing, in particular in patients at high risk for perioperative myocardial infarction. However, decision-makers will have to consider it in terms of opportunity costs, i.e. in relation to the cost-effectiveness of other potential programs within the broader health care context.</p> / Master of Science (MSc)

There is a pandemic of low-value clinical care that threatens the sustainability of our publicly funded healthcare systems. Over 30% of the health services provided to patients provide no benefit or may actually result in harm. Health services research is needed to critically evaluate our clinical practices and programs to ensure we create systems that consistently deliver high-value care. Unlike drug trials, health services research is complicated by enormous heterogeneity across cultures, environments, behaviours and systems. Ideally, local research communities should devise and conduct health services research to ensure that both the research questions and outcomes are relevant to community members, and thus more likely to result in sustainable healthcare systems. Embedded researcher models are emerging as a viable approach to supporting local research activities. Embedded researchers are part of the community they serve, provide research expertise to local investigators and community members, and help develop local research systems that facilitate health services research activities. While they may still collaborate with academic partners, this is not necessary for their research success. This thesis documents the transformation of a large community hospital in Ontario into a learning health centre through the use of an embedded researcher model. The first part of the thesis is focused on the results of incorporating an embedded research plan into the hospital’s new antimicrobial stewardship program. The research that emerges from this work contributes new knowledge about the value of antimicrobial stewardship to important patient outcomes such as reduced lengths of hospital stay and rates of Clostridium difficile infections. The thesis concludes with a discussion of the implementation of all the necessary components needed to support a learning health centre and how an embedded researcher model facilitated this transformation and could be used by any similar organization to achieve the same result. / Thesis / Doctor of Philosophy (PhD) / Over 30% of the health services provided by our healthcare systems does not benefit and may actually harm patients. Health services research is therefore a necessary activity required to reduce this waste. In Ontario, over 65% of patients receive their acute care in large community-based hospitals, and yet, these hospitals have minimal research activity and capacity despite repeated attempts by the academic research community to engage these institutions through a variety of collaborative models such as integrated knowledge translation. This thesis provides a blueprint for the transformation of a large community hospital into a learning health centre through the use of a locally created, locally relevant, embedded researcher model. Starting with a proof of concept through the systematic evaluation of an antimicrobial stewardship program, the thesis ends with a ‘how to’ guide for the implementation of the foundational elements needed to support health services research in similar organizations.

Youth tobacco use is a public health concern in the United States (U.S.) with about 2.8 million middle and high school youth reporting current tobacco use in 2023. Healthcare providers (HCPs) can play a crucial role in addressing youth tobacco use through screening and counseling, yet rates of these interventions are suboptimal. Tennessee has a high prevalence of youth tobacco use and not much is known about these interventions in Northeast Tennessee. This study has several objectives: 1) conduct a scoping review of available evidence on screening and counseling for youth tobacco use and identify related gaps; 2) assess youth self-reported rates of HCPs’ screening and counseling for tobacco use among U.S. youth, and identify associated factors; 3) explore HCPs’ experiences and identify barriers and facilitators in implementing screening and counseling interventions for youth tobacco use in Northeast Tennessee; and 4) provide recommendations for policy and practice based on identified gaps. This multi-method study employed 1) a scoping review, adhering to the Johanna Briggs Institute methodology; 2) a cross-sectional analysis of data from the 2022 National Youth Tobacco Survey using logistic regression models; 3) a qualitative study using a blended-inductive coding of semi-structured interviews and thematic analysis, and 4) a research brief highlighting the policy and practice implications of study findings. The scoping review analyzed 22 articles and revealed disparities in HCPs’ tobacco screening and counseling interventions. The quantitative study showed tobacco screening and counseling rates of 43.7% and 3 45.6%, respectively. Younger youth (9–12 years) and non-Hispanic (NH) Black, Hispanic, and NH Asian youth were less likely to receive screening and counseling compared to NH White youth. In-depth interviews with 12 primary care providers (PCPs) revealed varying levels of confidence in screening and counseling for tobacco use. PCPs primarily conduct formal screening for older youth (12–18 years), and barriers such as time constraints, lack of confidentiality, and resistance from youth were frequently mentioned. Efforts should be made to improve screening and counseling interventions for youth tobacco use by implementing policies to reduce barriers and increase HCPs’ awareness regarding early intervention for all age groups, races, and ethnicities.

Background Postpartum depression (PPD) is a major public health challenge and associated with poor maternal and infant health outcomes. Quality prenatal care decreases adverse outcomes in pregnancy and may reduce PPD risk factors. This study critically reviews the evidence about the role of prenatal care practices in reducing PPD prevalence across population groups and examines the association between prenatal care timing and counseling content with PPD prevalence. Methods A scoping review was completed across eight databases to synthesize evidence about prenatal care and PPD across different contextual settings. National data from the Pregnancy Risk Assessment Monitoring System (PRAMS) was used to examine the research questions. The key outcome was PPD symptoms as self-reported by postpartum women. Key independent variables were timing and content of prenatal care. Bivariate analyses used chi-square and t-tests, as appropriate, and a logistic regression analysis examined associations at the multivariable level while accounting sociodemographic characteristics, history of depression, and interaction effects. An issue brief was developed, triangulating findings from the scoping review and quantitative analysis. Results Forty-five studies were analyzed as a part of the scoping review and identified a strong association between robust prenatal care that included education about depression and increased awareness of PPD prevention among pregnant women. In the PRAMS analysis, women with a history of depression (aOR: 2.87; 95% CI: 2.74, 2.99) and those who initiated prenatal care in the third trimester or had no prenatal care (aOR: 1.54; 95% CI: 1.21, 1.85) had higher odds of PPD. Women who were not asked about depression during prenatal care had higher odds of PPD (aOR: 1.26; 95% CI: 1.21, 1.32). Women who were Asian, Black, and asked less than five questions on health-related topics during prenatal care were more likely to report PPD symptoms. Conclusion Blending education and counseling into routine prenatal care for pregnant women will increase awareness of depression, thereby preventing PPD. Prenatal care should, therefore, be accompanied by evidence-based systems for counseling, education, diagnosing, treatment, and referral of perinatal depression. To optimize the health of women, prenatal care should provide services and support tailored to each woman's needs.

A Collaborations for Leadership in Applied Health Research and Care (CLAHRC) funded study engaged health visitors in investigating the ways in which routinely collected data were captured, stored, transferred, analysed and then used to inform clinical practice. This report focuses on the establishment of a community of practice (CoP) to support these activities and then presents the outcome of the CoP's investigations into the collection and use of data on one key area of concern; maternal smoking behaviour. Evidence-based recommendations for clinical practice made by the CoP ranged from simple changes to the daily working practices of health visitors to ensure accurate data collection and dissemination of information, to major changes to processes and procedures relating to data quality and data sharing. The findings of the CoP emphasised the importance of cross-discipline communication and collaboration.

BACKGROUND:Integrative medicine (IM) is a patient-centered, healing-oriented clinical paradigm that explicitly includes all appropriate therapeutic approaches whether they originate in conventional or complementary medicine (CM). While there is some evidence for the clinical and cost-effectiveness of IM practice models, the existing evidence base for IM depends largely on studies of individual CM therapies. This may in part be due to the methodological challenges inherent in evaluating a complex intervention (i.e., many interacting components applied flexibly and with tailoring) such as IM.METHODS/DESIGN:This study will use a combination of observational quantitative and qualitative methods to rigorously measure the health and healthcare utilization outcomes of the University of Arizona Integrative Health Center (UAIHC), an IM adult primary care clinic in Phoenix, Arizona. There are four groups of study participants. The primary group consists of clinic patients for whom clinical and cost outcomes will be tracked indicating the impact of the UAIHC clinic (n=500). In addition to comparing outcomes pre/post clinic enrollment, where possible, these outcomes will be compared to those of two matched control groups, and for some self-report measures, to regional and national data. The second and third study groups consist of clinic patients (n=180) and clinic personnel (n=15-20) from whom fidelity data (i.e., data indicating the extent to which the IM practice model was implemented as planned) will be collected. These data will be analyzed to determine the exact nature of the intervention as implemented and to provide covariates to the outcomes analyses as the clinic evolves. The fourth group is made up of patients (n=8) whose path through the clinic will be studied in detail using qualitative (periodic semi-structured interviews) methods. These data will be used to develop hypotheses regarding how the clinic works.DISCUSSION:The US health care system needs new models of care that are more patient-centered and empower patients to make positive lifestyle changes. These models have the potential to reduce the burden of chronic disease, lower the cost of healthcare, and offer a sustainable financial paradigm for our nation. This protocol has been designed to test whether the UAIHC can achieve this potential.TRIAL REGISTRATION:Clinical Trials.gov NCT01785485.

BACKGROUND: The field of health literacy research has been focused recently on developing more accurate measurement tools and understanding the relationship between health literacy and health outcomes. Individuals with lower levels of health literacy have worse health outcomes, including hospitalization rates, compared to those with adequate health literacy. This relationship has yet to be examined in the cancer patient population, although significant relationships between health literacy and cancer knowledge, screening behavior and quality of life have been found. This study is the first to examine the relationship between health literacy and hospitalization rates in a cancer patient population, and the first to examine the relationship between health literacy and health outcomes using the recently developed Cancer Health Literacy Tests (CHLT-30, CHLT-6). METHOD: These secondary data analyses matched data collected during the larger Cancer Health Literacy Study (CHLS) to hospital data from electronic medical records. This study examined the data of 778 CHLS participants interviewed within the first five years of their cancer diagnosis. The outcomes of interest were the number of inpatient hospital admissions, the total number of days spent hospitalized, and the number of 30-day hospital readmissions. Multivariate multiple negative binomial regression modeling was done to identify predictors of the three hospitalization outcomes. RESULTS: The CHLT-30 was found to significantly predict number of inpatient admissions when controlling for confounding variables, total days hospitalized, and number of readmissions. The CHLT-6 significantly predicted total days spent hospitalized when controlling for number of inpatient admissions, number of 30-day readmissions, treatment, race, stage, number of comorbidities, dying, and education level, with those with limited health literacy spending more days in the hospital as compared to those with adequate health literacy. CONCLUSION: This study produced mixed results regarding the significance of health literacy in predicting hospitalization rates in a cancer patient population. However, this study provides evidence that health literacy may be a mediator in this relationship and further work should be done to test a full or partial mediation model.

Introdução: A terapia de nutrição enteral é imprescindível na manutenção e na reabilitação da pessoa acometida por condições crônicas assistida no contexto domiciliar. Para o êxito desta terapêutica, é imperativo assegurar a articulação entre os profissionais e os serviços de saúde e promover a autonomia dos usuários/cuidadores, reconhecendo-os como parceiros. Objetivo geral: Avaliar a prática da terapia de nutrição enteral (TNE) no Programa de Assistência Domiciliária, em um hospital universitário do Município de São Paulo. Método: Pesquisa desenvolvida nas abordagens quantitativa (fase1) e qualitativa (fase 2), exploratório-descritiva, na modalidade de estudo de caso. O cenário foi o Programa de Assistência Domiciliária do Hospital Universitário da Universidade de São Paulo. A coleta de dados ocorreu entre outubro de 2015 e maio de 2016. Na fase 1, quantitativa, os sujeitos corresponderam a 36 usuários, e os dados foram coletados por meio de dois formulários. Para a análise, empregou-se a estatística descritiva e inferencial. Na fase 2, qualitativa, os participantes foram sete profissionais de saúde e 10 cuidadores/familiares. Para a coleta de dados, adotou-se a entrevista semiestruturada que foi transformada em narrativas, submetidas à análise de conteúdo de Bardin, categorizadas e analisadas à luz do referencial teórico proposto por Wagner. Resultados: Na fase 1, constatou-se que 66,7% eram do sexo feminino, 77,8% com idade a 60 anos e 88,9% estavam acamados. Em relação aos cuidadores/familiares, 88,9% pertenciam ao sexo feminino, possuíam vínculo familiar e média de idade de 51,2 anos (dp13). Quanto à via de acesso, predominaram a nasoenteral (52,8%) e a dieta industrializada (47,3%). A incidência de extubação gástrica foi 1,15/100 pacientes-dia; sendo 0,67/100 pacientes-dia para a não planejada, tendo como principal motivo, o rompimento do balão da sonda de gastrostomia. Nos achados da fase 2, as cinco categorias corresponderam: A nutrição enteral em domicílio: o desvelar do cuidado; Os componentes da tríade avaliativa donabediana no contexto institucional; A expressão de sentimentos: passado, presente e futuro; A tessitura do cuidar: o olhar da equipe interprofissional e dos cuidadores/familiares e A articulação dos serviços de saúde na atenção ao usuário em TNED: do ideal ao real. Dessa maneira, a experiência dos participantes foi marcada pela transição e estabelecimento do cuidado no domicílio, pelo compromisso com o aprendizado e pela superação de obstáculos, frente às extubações não planejadas e o processo de aquisição de dieta industrializada. Considerações Finais: Esta pesquisa propiciou descrever a realidade dos usuários em terapia de nutrição enteral domiciliar (TNED) e conhecer a percepção dos profissionais de saúde e cuidadores/familiares acerca da assistência, permeada por questões envolvendo as atividades do cotidiano dos usuários, o trabalho interprofissional e os desafios oriundos da nutrição enteral no contexto domiciliar. Outrossim, permitiu revisitar o processo de educação em saúde para usuários/cuidadores em TNED, oportunizando a reconstrução de material educativo, com vistas a aprimorar a aquisição do conhecimento e o desenvolvimento de habilidades, que fomentem escolhas e decisões assertivas para melhores desfechos em saúde. / Introduction: Enteral nutrition is essential for maintaining and rehabilitating a person affected by chronic conditions assisted in the home context. For the success of this therapy, it is imperative to ensure the articulation between professionals and health care services promoting the autonomy of patient and caregivers, recognizing them as partners. Objective: To evaluate the practice of Enteral Nutrition (EN) therapy in a Home Care Program, in a university hospital in the city of São Paulo. Method: This research was developed in two phases: quantitative (phase 1) and qualitative (phase 2), both in exploratory-descriptive approaches as a case study. The scenario was the Home Care Program of the University Hospital of the University of São Paulo. Data collection was made between October 2015 and May 2016. In the quantitative phase, the subjects corresponded to 36 patients and the data was collected through two forms while descriptive and inferential statistics were used for the analysis. In the qualitative phase, the participants were seven health professionals and 10 caregivers/family members. For the data collection, a semi-structured interview was adopted, which was then converted into narratives and submitted to the Bardin content analysis, categorized and analysis in light of the theoretical framework proposed by Wagner. Results: In stage 1, was found that 66.7% were female, 77.8%, 60 years and 88.9% were bedridden. Regarding the caregivers/family members, 88.9% were female, with a family tie and the mean age was 51.2 years (sd13). Concerning the access routes, the nasoenteral (52.8%) and the industrialized diet (47.3%) were predominant. The incidence of gastric extubation was 1.15/100 patient-days; and 0.67/100 patient-days represented unplanned ones, due mostly to ruptures of the gastrostomy tube. In the findings of phase 2, five categories corresponded to: Home Enteral Nutrition (HEN): the unveiling of care; The components of the Donabedian triad evaluation in the institutional context; The expression of feelings: past, present and future; The structure of care: the look of the interprofessional team and caregivers/family; and The articulation of health services in the care of users in home enteral nutrition therapy: from ideal to reality. This way, the participants\' experience was marked by the transition to and establishment of home care, the commitment to learning and overcoming obstacles due to unplanned extubations, and the process of acquiring an industrialized diet. Conclusion: This research aimed to describe the reality of patients in HEN and to comprehend the perception of health professionals and caregivers/family concerning the care, permeated by issues involving patient\' daily activities, interprofessional work and the challenges of enteral nutrition in the home context. In addition, it allowed revisiting the process of health education for patients, caregivers and family members in HEN, offering a reconstruction of the educational material, with a view to improving the knowledge acquisition and abilities development, which foment choices and assertive decisions for better outcomes in health.

A satisfação dos usuários é considerada um componente importante da qualidade assistencial e, por isso, tem ocupado cada vez mais um lugar destacado nos processos de avaliação dos serviços de saúde, especialmente na atenção básica. Esta pesquisa descritiva, de abordagem qualitativa, teve o objetivo de analisar a satisfação dos usuários quanto à assistência recebida em serviços de atenção básica de Passos-MG, sob a perspectiva dos atributos essenciais da Atenção Primária à Saúde. Teve como cenário 28 unidades de saúde, sendo 19 Unidades da Estratégia de Saúde de Família e 9 Unidades Básicas de Saúde convencionais. Para coleta dos dados, foram desenvolvidos 3 grupos focais. A amostra foi constituída por 23 usuários selecionados aleatoriamente. Os critérios de inclusão foram: ter idade mínima de dezoito anos, possuir cadastro na Unidade de Saúde, utilizar os serviços de sua Unidade de Saúde de referência há mais de um ano e não apresentar deficiência cognitiva. A análise dos dados foi feita por meio da análise de conteúdo de Bardin. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa. Os resultados foram descritos mediante três categorias empíricas: o modelo de atenção à saúde e os atributos essenciais da Atenção Primária à Saúde; o uso das tecnologias e a (in) satisfação dos usuários e a ambiência da Unidade de Saúde. Dispositivos como acolhimento, atenção centrada nos pacientes, uso de protocolos clínicos e mais humanização nos cuidados aumentam a satisfação. Os atributos acessibilidade, integralidade e coordenação da atenção estão predominantemente relacionados a insatisfações dos usuários. Pode-se concluir que os atributos de acesso e longitudinalidade satisfizeram os usuários da Atenção Básica. A pesquisa possibilitou um diagnóstico do município, a partir da (in)satisfação dos usuários, indicando a necessidade de se instituir como rotina das equipes de saúde à avaliação da satisfação dos usuários com a finalidade de se ter um retorno sobre as ações e serviços de saúde oferecidos para comunidade / The users\' satisfaction is considered an important component of care quality and, therefore, increasingly has occupied a prominent place in the processes of evaluation of health services, especially in primary care. This descriptive research, qualitative approach, had the objective of analyzing the users\' satisfaction regarding the care received in primary care services of Passos- MG, from the perspective of the essential attributes of Primary Health Care. Had as its backdrop 28 health units, 19 units of the Family Health Strategy and 9 Basic Health Units. For data collection, have been developed 3 focal groups. The sample was composed of 23 randomly selected users. The inclusion criteria were: have a minimum age of 18 years, have register at the Health Unit, use the services of your healthcare unit of reference more than a year ago and did not present cognitive deficiency. The data analysis was performed by means of content analysis of Bardin. The research was approved by the Research Ethics Committee. The results were described by three empirical categories: the health care model and the essential attributes of Primary healthcare; the use of technologies and the (in) users\' satisfaction and the ambience of the Health Unit. Devices such as hospitality, attention focused on patients, the use of clinical protocols and more humanization in care increase satisfaction. The attributes of accessibility, comprehensiveness, and coordination of care are predominantly related to dissatisfaction of users. It can be concluded that the attributes of access and longitudinality satisfied users of Primary Care. The research made a diagnosis of the municipality, from the (in) user satisfaction, indicating the need to establish a routine of health teams to evaluation of user satisfaction with the purpose of having a return on the actions and health services offered to the community