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.

Background: Health technology assessment (HTA) is a form of policy analysis to inform recommendations for decision-makers. An equity-focused HTA recommendation consists of one that explicitly addresses the impact of health technologies on individuals disadvantaged in society because of their social conditions. However, there is a need for more evidence on the relationships between patient engagement and the development of equity-focused HTA recommendations. Objectives: The objectives of this dissertation were to examine the association between patient engagement and equity-focused HTA recommendations and identify implementation considerations for patient engagement in HTA. Methods: I used explanatory sequential mixed methods to analyze 60 HTA reports and 11 interviews with patients and analysts from Canadian organizations: the Canadian Agency for Drugs and Technologies in Health (CADTH) and Health Quality Ontario (HQO). Results: Quantitative analysis of the HTA reports showed that patient engagement significantly predicts equity-focused HTA recommendations (OR: 0.26; 95% CI: [0.16 – 0.41]). HTA reviews where HTA analysts directly interviewed patients (OR: 3.85; 95% CI: [2.40 – 6.20]) and where an advisory committee used consensus were more likely to contain equity-focused recommendations (OR: 2.27; 95% CI: [1.35 – 3.84]). Qualitative analysis of the interviews identified strategies for engaging diverse patients in HTA. Conclusion: The findings of this dissertation can inform the designing of patient engagement in HTA.

The increasing diversity of the United States creates a pressing public health need to investigate methods to increase the engagement, retention, and efficacy of mental health services for racial/ethnic minority (REM) youth. Evidence from the adult psychotherapy treatment literature suggests that enhancing therapist cultural competence leads to increases in client satisfaction, alliance, and retention (Constantine, 2002; Sodowsky, Kuo-Jackson, Richardson, & Corey, 1998; Worthington, Soth-McNett, & Moreno, 2007). However, this relationship has not been adequately explored in youth mental health services, due in part, to a lack of valid and reliable measurement. This research project included measure development and initial validation of the Youth Therapist Observational Cultural Competence Scale (YTOCCS) with the aim of creating an observer-rated measure of youth therapist cultural competence. The measure was developed from a review of the theoretical and empirical literature and integrated the surveyed opinions of practicing child therapists, caregivers of REM children involved in the mental health system, and experts in therapist cultural competence. The study used an extreme group design based on child-therapist alliance selecting 32 recordings of 8 unique child-therapist dyads. Three coders were trained using a standardized manual and independently double coded early treatment sessions from an effectiveness trial for individual child cognitive-behavioral therapy conducted in community clinics. The measure demonstrated good reliability as measured by intraclass correlation coefficient, adequate internal consistency, and evidence supported initial validity through demonstrated significant between-group differences. Future studies are warranted to refine the measure and to explore the factor structure of the measure.

Patient portals are web-based tools that provide patients with access to their health records and enhance communication with providers. Despite the efforts in expanding their use and patients interest in using them, patient portal usage remains low. Higher use of portals is associated with greater patient engagement and better healthcare quality and outcomes. This study investigated the impact of perceived usefulness (PU) and perceived ease of use (PEU) on patient portal usage. The conceptual framework was based on the Technology Acceptance Model, which suggests that PU and PEU of a system affect attitude and behavioral intention toward using the system, and ultimately the use of the system. The research questions focused on whether PU and PEU significantly affect portal usage. Participants included a convenience sample of 432 patients of Abington Health, located in Abington, PA, who had access to Abington's eClinicalWorks patient portal. Cross-sectional data collected from the completed online surveys included responses to Davis' PU and PEU measurement scale, self-reported portal login frequency and login duration, and some patient demographics. Data was analyzed by using chi-square test of independence and multinomial logistic regression. The study found that a significant relationship exists between PU and login frequency, PU and login duration, and PEU and login duration; however, the impact of PU and PEU on portal usage was not significant. The study could be repeated among a different population using a different patient portal. This study helps understand the relationship between PU/PEU and portal usage, something healthcare providers can capitalize upon when promoting portal use, and ultimately, encouraging greater patient engagement in their own health.

August 2016 Management of metabolic syndrome (MetS) may be enhanced by promoting patient engagement. Training health care providers in the conceptual and practical application of integrative patient centered care tools may promote patient lifestyle behaviors for better management of MetS. The purpose of this quantitative quasi-experimental study was to assess the impact of training providers in integrative patient centered care for patients with MetS. The biopsychosocial construct provided the conceptual framework for the study. Two groups of physicians were included; one received training in an integrative model (IM) while the second received no training and provided usual care (UC). Following training, patient disease biometrics and medication adherence were monitored for approximately four months. Due to a diminished sample size in the completer data set, an intention to treat (ITT) data set was created with baseline values brought forward. In the ITT set, BMI decreased significantly (p=0.005, d=0.18) with each group over time: (IM: 32.9 -± 7.3 Kg/m2 to 31.6 -± 6.8 Kg/m2) and (UC: 32.1 -± 6.7 to 31.5 -± 6.3 Kg/m2). However, there were no statistically significant differences between these two groups' measures. In the completer set, BMI decreased significantly (p < 0.05, d=0.18) over time with the IM group, but not the UC group: (IM: 35.14 -± 7.9 Kg/m2 to 33.65* -± 7.62 Kg/m2) and (UC: 32.4 -± 6.62 Kg/m2 and (32.4 -± 6.5 Kg/m2); indicating a possible relationship between the intervention training (IM) and improved health outcomes. Thus, providers are assisting patients with important lifestyle choices to better manage MetS, potentially leading to social change around improved patient health care behaviors and advancement in providers' patient centered practices.

Health care reform has caused consumers to learn more about what it means to have health insurance and its costs. Patient engagement, a critical component of health care reform, reflects provider and consumer attention to shared decision making between patient and physician. The problem addressed in this study is that although researchers have studied patient engagement, there has been insufficient exploration of the relationship between financial literacy and patient engagement, which could negatively impact health outcomes not only for patients or consumers but for society as a whole. The purpose of this quantitative research was to determine if a relationship exists between patient financial literacy and patient engagement, as measured by the patient activation measure. The potential effects of increased patient financial responsibility due to high deductible health plans, measured via an item inquiring about participants' deductible, as well as shared decision making between physician and patient were also evaluated as potential moderators between financial literacy and patient engagement. Theories used to provide conceptual context include Shim's cultural health capital theory and Bourbeau's (2008) self-management model. Two hierarchical linear multiple regression models were used to test the research hypotheses. While the research did not find a significant relationship between patient financial literacy and patient engagement, it did confirm the importance of mental health status and patient-physician shared decision making as important predictors of patient engagement. These findings provide a better understanding of financial literacy and specific financial behaviors in the context of healthcare environment today.

Approximately 52% of cancer patients require radiation therapy during the progression of their illness. Radiation therapy is a safe procedure; however, errors may occur and have the potential to harm patients. Recent studies have looked at patient engagement as a means of preventing errors in healthcare. Through interviews and focus groups, this study looks at patients’ and radiation therapists’ current perceptions of safety in radiation therapy and whether they feel that patient engagement in the form of a patient-provider collaborative checklist can improve its safety or the perception of safety. Through workflow observations and literature reviews, a patient-provider collaborative checklist was developed. Furthermore, STAI surveys were conducted to document the progression of patient anxiety through treatment. Feedback from radiation therapists demonstrated their opinions on the usability of the final iteration of the patient-provider collaborative checklist and how it could fit into the clinical setting.

Approximately 52% of cancer patients require radiation therapy during the progression of their illness. Radiation therapy is a safe procedure; however, errors may occur and have the potential to harm patients. Recent studies have looked at patient engagement as a means of preventing errors in healthcare. Through interviews and focus groups, this study looks at patients’ and radiation therapists’ current perceptions of safety in radiation therapy and whether they feel that patient engagement in the form of a patient-provider collaborative checklist can improve its safety or the perception of safety. Through workflow observations and literature reviews, a patient-provider collaborative checklist was developed. Furthermore, STAI surveys were conducted to document the progression of patient anxiety through treatment. Feedback from radiation therapists demonstrated their opinions on the usability of the final iteration of the patient-provider collaborative checklist and how it could fit into the clinical setting.

Obiettivo: Accrescere la conoscenza relativa a come supportare il coinvolgimento attivo dei pazienti anziani, descrivendo i contenuti di interventi per il coinvolgimento attivo con pazienti anziani attualmente presenti sul panorama scientifico, sviluppando un nuovo intervento e studiando le prime fasi della sua implementazione. Metodo: Nel primo studio, in risposta al primo obiettivo, è stata condotta una analisi sistematica della letteratura scientifica sul tema. Il secondo studio ha visto la conduzione di focus groups con professionisti sanitari e interviste individuali a pazienti anziani per raffinare e validare qualitativamente un nuovo intervento per il coinvolgimento attivo. Nel terzo studio, si è studiata l’implementazione iniziale dell’intervento in un contesto italiano di cure integrate attraverso una ricerca partecipativa. Risultati: Il principale risultato del primo studio è stato la sbilanciata attenzione tra i 35 interventi per il coinvolgimento attivo presenti in letteratura per le componenti emotive a favore di quelle educative e comportamentali. È sulla base dei risultati del primo studio e di un modello teorico che è stata sviluppata una prima bozza di intervento. Nel secondo studio, la prospettiva di professionisti sanitari e pazienti anziani ha fornito indicazioni per modificare l’intervento e renderlo potenzialmente implementabile nella pratica clinica. L’intervento che è risultato consiste di almeno due incontri mensili individuali, più un set personalizzato di esercizi riflessivi per il paziente da compilare in autonomia a casa. Infine, il terzo studio ha osservato come le diverse pratiche educative presenti nei diversi setting – ospedaliero, ambulatoriale, territoriale - di un contesto di cura integrato hanno generato diverse, specifiche, difficoltà per l’implementazione. Un certo sforzo di flessibilità e personalizzazione dei contenuti e delle procedure dell’intervento è stato dunque richiesto. Implicazioni: L’intervento sviluppato mostra potenzialità nel supportare il coinvolgimento attivo dei pazienti anziani, ma necessita di ulteriori studi relativi all’implementabilità sul lungo termine e alla sua efficacia. / Aim: To contribute knowledge about how patient engagement support can be provided to older adults, by describing the contents of interventions aimed at patient engagement for older adults, developing a patient engagement intervention, and studying its early-stage implementation. Methods: In study 1, a systematic review of the literature was performed. In study 2, a qualitative study with focus groups involving healthcare professionals and individual interviews to older adults was conducted to develop the intervention. In study 3, a qualitative study of a participatory process was accomplished to explore the early-stage implementation of the intervention in one integrated-care organization. Results: The main finding of study 1 was that the emotional dimension was less used than the educational and behavioural dimensions among the 35 patient engagement interventions for older adults. The findings from the study 1 were used, together with a theory of patient engagement, to develop a draft of an individual patient engagement intervention for older adults (PHEinAction). In the study 2, the views of healthcare professionals and older adults were used to refine and finally endorse it. The final version of PHEinAction consisted of at least two face-to-face one hour individual sessions one month apart, plus a set of personalized home-based exercises aimed to facilitate a range of emotional, behavioural, cognitive changes for patient engagement. Finally, the study 3 observed how the existing patient education practice of inpatient, outpatient and territorial settings differently challenged the implementation. A certain degree of flexibility of PHEinAction’s contents and procedures was required to address these challenges. Implications: PHEinAction shows promise as an intervention to improve patient engagement in older adults. However, more research is needed, especially focusing on long-term implementation studies and evaluation of effects with experimental studies.

Objectif : Il existe un besoin de structuration de l’engagement des patients dans des organisations de santé mentale. Toutefois, peu est connu concernant l’implantation de structures de ce type, et encore moins à un niveau stratégique. L’objectif est d’étudier l’implantation d’un comité organisationnel stratégique pour l’engagement des patients à travers son processus d’initiation et d’opérationnalisation, les facteurs qui facilitent et limitent l’implantation, et les conséquences perçues dans l’organisation. Méthode : Une approche qualitative a été utilisée, plus spécifiquement une étude de cas unique. Les différentes sources de données étaient des entrevues semi-structurées, des groupes de discussion, et des documents organisationnels. Les participants étaient différents acteurs (usagers des services, gestionnaires de différents niveaux, chercheurs, clinicien, membres de la direction générale et du comité d’usagers) en lien avec l’engagement des patients. Résultats : Le processus d’initiation incluait un besoin de formalisation et l’introduction d’une vision de la pleine citoyenneté. Le processus d’opérationnalisation incluait la composition et le rôle du comité, l’élaboration d’un encadrement pour la participation et son application continue incluant l’évaluation. Plusieurs facteurs facilitants ont été identifiés, incluant le soutien de la direction générale, du leadership et une vision pour la participation. Les facteurs limitants concernaient la résistance contre la participation et l’existence de la stigmatisation. Les conséquences étaient une augmentation et un meilleur engagement des patients, et une réduction de la stigmatisation dans l’organisation. Conclusion : Cette étude illustre le processus d’implantation d’un comité organisationnel stratégique pour l’engagement des patients en incluant des nombreux éléments, d’acteurs et de facteurs. L’importance d’un leadership provenant de plusieurs acteurs, ainsi qu’une vision pour la participation afin d’encadrer efficacement l’engagement des patients sont mises en évidence. / Objective: There is a need for structure for patient engagement to function within mental healthcare organizations. Despite this, little is known about how to implement these kinds of structures, and even less on a strategic level. The aim is to study the implementation of a strategic organizational committee for patient engagement through its initiation and operationalization process, the factors that are facilitating or limiting the implementation, and the perceived consequences within the organization. Method: A qualitative approach has been used in this study. A single case study has been carried out with semi-structured interviews, focus groups and organizational documents as data sources. The participants were different actors (service users, managers on different levels, researchers, clinician, members of top management and user’s committee) taking part in the patient engagement. Results: The initiation process included a need for formalization, and the introduction of a vision of full citizenship, while the operationalization process contained the composition and role of the committee, the elaboration of a frame for the participation, and its ongoing application including evaluation. Several facilitating factors were identified, including top management support, leadership, and a vision behind the participation. The limiting ones mainly concerned resistance towards the participation and the existence of stigma. The consequences included increased and improved patient engagement, and reduced stigma within the organization. Conclusion: This study illustrates the process of implementation of a strategic organizational committee for patient engagement including multiple elements, actors, and influencing factors. It highlights the importance of leadership by many actors and a vision behind the participation, to successfully frame the patient engagement.