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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.

The historical perspective of schools in our democratic society provides a framework of tension between local parent and community control and professional and state control of public school decisions. Today, federal and state requirements demand increased student achievement. One school reform effort enlisted to help meet the challenges is the creation of site-based decision-making councils that involve school administrators, teachers and parents. The state of Utah requires each public school to have a School Community Council that is responsible for the development of plans for school improvement. Limited funds are provided to each School Community Council through the School LAND Trust Program. The funds are to be used to assist in the implementation of the developed plans for the purpose of increased student achievement. Three Utah Middle level SCCs participated in this qualitative strength-based process evaluation. Two of the SCCs were identified as exemplary, and the third SCC was just beginning to function as an SCC. Based on the three questions guiding the evaluation, the evaluation learned that SCCs identified as exemplary were compliant with the law, employed strategies identified in the literature for effective site-based decision-making, and implemented plans that were perceived to impact student achievement. In addition, themes emerged from the strength-based approach to learn what SCC processes influenced an effective balance between the professional expertise and the democratic involvement in decision-making. The emergent themes deal with processes related to membership and elections, sources of confidence, use of data to drive school improvement decision, and communication.

Purpose. To systematically develop and field test an intervention to engage families and healthcare teams in the decision-making process about life support for critically ill patients in the Intensive Care Unit (ICU). Setting. Adult medical-surgical ICU at a Canadian academic teaching hospital. Methods. The International Patient Decision Aid Standards (IPDAS) criteria and the Interprofessional Shared Decision Making (SDM) model guided the study of families facing decisions about life support for their relative in ICU that involved:1) systematic review; 2) qualitative descriptive study; 3) mixed methods field test of a novel patient decision aid (DA). Systematic review findings. Of 3162 citations, four trials evaluated interventions to improve communication between health professionals and patients/families. One intervention met eight of nine criteria for SDM but did not evaluate its effect on the benefit to communication. Qualitative study findings. Six family members and nine health professionals identified two options (life support or comfort care) and values associated with these options. Values included maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, giving the family enough time to adapt emotionally to the patient’s health situation, and the judicious use of healthcare resources. Families were unlikely to become engaged without healthcare professionals making the decision explicit and minimizing other barriers across the decision-making process. Field test findings. Family members and health professionals for eight patients indicated that the DA was feasible to use, acceptable to users, had the potential to do what was intended, and did not seem to present adverse consequences to users. An enhanced delivery strategy is needed for future evaluation of its effect on facilitating patient/family involvement in decisions. Conclusions. Limited involvement of families in the process of decision-making about life support in the ICU reinforced the need for effective interventions to facilitate SDM. These studies validated the operationalization of the IPDAS criteria, as part of a systematic process for developing and field testing DAs. However, IPDAS criteria stop short of elements necessary to consider when implementing the DA in the processes of care.

Purpose. To systematically develop and field test an intervention to engage families and healthcare teams in the decision-making process about life support for critically ill patients in the Intensive Care Unit (ICU). Setting. Adult medical-surgical ICU at a Canadian academic teaching hospital. Methods. The International Patient Decision Aid Standards (IPDAS) criteria and the Interprofessional Shared Decision Making (SDM) model guided the study of families facing decisions about life support for their relative in ICU that involved:1) systematic review; 2) qualitative descriptive study; 3) mixed methods field test of a novel patient decision aid (DA). Systematic review findings. Of 3162 citations, four trials evaluated interventions to improve communication between health professionals and patients/families. One intervention met eight of nine criteria for SDM but did not evaluate its effect on the benefit to communication. Qualitative study findings. Six family members and nine health professionals identified two options (life support or comfort care) and values associated with these options. Values included maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, giving the family enough time to adapt emotionally to the patient’s health situation, and the judicious use of healthcare resources. Families were unlikely to become engaged without healthcare professionals making the decision explicit and minimizing other barriers across the decision-making process. Field test findings. Family members and health professionals for eight patients indicated that the DA was feasible to use, acceptable to users, had the potential to do what was intended, and did not seem to present adverse consequences to users. An enhanced delivery strategy is needed for future evaluation of its effect on facilitating patient/family involvement in decisions. Conclusions. Limited involvement of families in the process of decision-making about life support in the ICU reinforced the need for effective interventions to facilitate SDM. These studies validated the operationalization of the IPDAS criteria, as part of a systematic process for developing and field testing DAs. However, IPDAS criteria stop short of elements necessary to consider when implementing the DA in the processes of care.

Patient-centred care has become an important model for health-care delivery, especially in cancer care. The implementation of this model includes patient-centred communication between the clinician and his or her patient. However, most research on patient-centred communication focuses on the clinicians’ initiative: what clinicians should do and what information they should seek to elicit from patients. It is equally important to recognize what each individual patient can contribute about his or her unique perspective on the disease, its treatment, and the effects on what is important to this patient. This thesis reports the development of a system for analyzing over 1500 utterances made by patients in eight video-recorded oncology consultations at the British Columbia Cancer Agency, Vancouver Island Centre. The analysis distinguishes between biomedical information that the patient can provide and patient-centred information, which contributes the individual patient’s unique perspective on any aspect of his or her illness or treatment. The resulting analysis system includes detailed operational definitions with examples, a decision tree, and .eaf files in ELAN software for viewing and for recording decisions. Two psychometric tests demonstrated that the system is replicable: high inter-analyst reliability (90% agreement between independent analysts) on a random sample of the data set and cross-validation to the remainder of the data set. A supplemental idiographic analysis of each consultation illustrates the important role that patient-centred information played in these consultations. This system could be an important tool for teaching clinicians to recognize the individual information that patients can provide and its relevance to their care. / Graduate / 0992 / 0451 / 0350 / shealing@uvic.ca

Recent decades have seen increasing recognition of the importance of patient involvement during patient-professional interactions and promotion of preventative and long term approaches to healthcare for those with long-term conditions. The concepts of 'shared decision making' and 'personalised care planning' have both been advocated by patient groups, policy-makers, professional bodies and academia as best practice. During shared decision making, patients and healthcare professionals work in equal partnership to decide the best course of action. Shared decision making is a central tenet of personalised care planning, as it aims to foster partnerships between patients and healthcare professionals when making decisions, but personalised care planning also describes an overall approach to healthcare that is forward-planning and preventative, rather than episodic and reactive. Despite the breadth of support for such approaches, in reality they are not routinely adopted. Multiple Sclerosis (MS) is a heterogeneous neurodegenerative long term condition, which is unpredictable with limited treatments available. Such uncertainty and complexity position MS as an interesting long term condition to explore decisional and information needs. This doctoral research comprises of three methods stages. Firstly, two systematic reviews assessing the effectiveness of personalised care planning for people with long-term conditions and people with MS were carried out. Secondly, 22 in-depth semi-structured qualitative interviews were carried out with people with MS across the UK to explore experiences of decision making and interactions with healthcare professionals. Purposive sampling was carried out and data saturation determined sample size. A modified grounded theory approach was used and thematic analysis of interview data was carried out. Lastly, a series of structured qualitative interviews were carried out with 6 consultant neurologists. This stage was iterative in that problematic areas identified during analysis of interview data from stage 2 were presented to neurologists in infographic form to further examine issues raised. Framework analysis was carried out on neurologist interview data to examine their interpretations and potential solutions. Although there appears to be some evidence demonstrating that personalised care planning is effective for people with long term conditions, such favourable effects were not demonstrated in the context of MS. Based on the findings from the systematic reviews it is unclear whether personalised care planning is effective for people with MS and there is a clear gap in the literature examining this. Findings from the interview stages suggest there are key areas which are lacking in terms of information and decisional support. Such areas included the type and amount of information around the time of diagnosis, support when choosing disease modifying drugs and discussions about approaches outside mainstream medicine. Findings from neurologist interview data corroborated those from MS interview data, but through examination of issues raised it also highlighted some of the complexities and challenges of involving patients and enacting shared decision making in reality. This research identified key areas that require improvement for people with MS in terms of provision of the information and decisional support. Although in theory personalised care planning and shared decision making are positioned as best practice, in reality it is unclear whether they are effective or appropriate for people with MS. The way in which such approaches are enacted are complex and require careful consideration. Potential barriers and pitfalls identified within this study suggest a lack of clarity in how to respond to challenges and further investigation into how patient involvement is enacted is needed.

La loi du 04 mars 2002 relative aux droits des malades et à la qualité et à la qualité du système de santé et la loi HPST (Hôpital, Patients, Santé et Territoires) de 2009 qui accorde un cadre légal à l’éducation thérapeutique ont promu l’autonomie du patient en favorisant sa participation aux décisions médicales. L’autogestion de la maladie chronique voulue par les pouvoirs publics en fournissant ces outils juridiques pour améliorer la qualité de soins, a suscité notre intérêt pour programme d’éducation thérapeutique destiné à des patients insuffisants rénaux en pré-dialyse. L’un des objectifs est de favoriser la liberté des patients à choisir une méthode de dialyse. Dans notre travail de thèse, nous avons voulu montrer comment les déterminants sociaux des décisions médicales et ceux liés aux choix d’une méthode de dialyse sont construits. Si en France, les patients semblent davantage se tourner vers une prise en charge à l’hôpital, dans certains pays, c’est le pluralisme médical qui est de mise. L’exercice de l’auto-analyse a montré le poids de l’économique, de la culture, de la famille dans les choix de santé.Par ailleurs, la place de l’éducation thérapeutique dans le processus décisionnel n’est pas figée : l’éducation thérapeutique peut être complémentaire à la pratique médicale, être un outil d’aide à la décision pour certains patients insuffisants rénaux ou être utilisée par les médecins pour favoriser l’observance décisionnelle des patients. Nous avons montré que les patients et les médecins se basent sur plusieurs facteurs qui peuvent influencer la nature de la délibération.Cette étude a montré que le choix est réseauté et que les décisions sont construites car elles sont basées sur des interactions et des stratégies médicales. Ces déterminants permettent également de comprendre comment la confiance est construite dans le processus décisionnel. Tantôt distribuée, tantôt déplacée, la confiance est explicative du type d’information que le patient priorise. Le choix réseauté du patient amène finalement à la relativisation du modèle de décision médicale partagée qui semble de plus en plus avoir un caractère normatif dans la relation entre professionnels de santé et patients. / The law of March 04th, 2002 on the rights of patients and the quality of the health system and the law HPST (Hôpital, Patients, Santé et Territoires) of 2009 that grants legal framework for patients’ education, have promoted the patient’s autonomy by encouraging his participation in medical decisions. Self-management of chronic illness as favoured by public authorities in providing the legal tools to improve the quality of care has aroused our interest in patient education programs for patients with renal failure in pre-dialysis. One of the objectives of this program is to allow patients free choice when deciding on the method of dialysis.Our thesis aims to underline how the social determinants at work in medical decisions and those involved in the choice of a dialysis method are constructed.In France, patients seem to favor hospital patient care, but in some countries, medical pluralism is more frequent. The exercise of self-analysis has revealed the significant part played by economy, culture and family in health choices.Moreover, the part played by patient education in the decision-making process is neither fixed nor pre-determined: patient education can complement medical practice, can be a decision support tool for some kidney patients or be used by doctors to promote patient decision-making compliance.We have shown that patients and physicians rely on several factors that may influence the nature of the discussion.This study reveals that the choice is networked and that the decisions that are made are the outcome of several interactions and medical strategies. These determinants also help to understand how trust develops and leads to decision-making.Sometimes distributed, sometimes shifted, trust accounts for the type of information prioritized by the patient. The networked choice of the patient finally puts the shared decision-making model into perspective as it increasingly seems to have a normative character in the relationship between health professionals and patients.

Purpose. To systematically develop and field test an intervention to engage families and healthcare teams in the decision-making process about life support for critically ill patients in the Intensive Care Unit (ICU). Setting. Adult medical-surgical ICU at a Canadian academic teaching hospital. Methods. The International Patient Decision Aid Standards (IPDAS) criteria and the Interprofessional Shared Decision Making (SDM) model guided the study of families facing decisions about life support for their relative in ICU that involved:1) systematic review; 2) qualitative descriptive study; 3) mixed methods field test of a novel patient decision aid (DA). Systematic review findings. Of 3162 citations, four trials evaluated interventions to improve communication between health professionals and patients/families. One intervention met eight of nine criteria for SDM but did not evaluate its effect on the benefit to communication. Qualitative study findings. Six family members and nine health professionals identified two options (life support or comfort care) and values associated with these options. Values included maintaining quality of life, surviving critical illness, minimizing pain and suffering, not being attached to machines, giving the family enough time to adapt emotionally to the patient’s health situation, and the judicious use of healthcare resources. Families were unlikely to become engaged without healthcare professionals making the decision explicit and minimizing other barriers across the decision-making process. Field test findings. Family members and health professionals for eight patients indicated that the DA was feasible to use, acceptable to users, had the potential to do what was intended, and did not seem to present adverse consequences to users. An enhanced delivery strategy is needed for future evaluation of its effect on facilitating patient/family involvement in decisions. Conclusions. Limited involvement of families in the process of decision-making about life support in the ICU reinforced the need for effective interventions to facilitate SDM. These studies validated the operationalization of the IPDAS criteria, as part of a systematic process for developing and field testing DAs. However, IPDAS criteria stop short of elements necessary to consider when implementing the DA in the processes of care.

Background: Management of atrial fibrillation (AF) is complex and requires active patient engagement in shared decision making to achieve better clinical outcomes, greater medication adherence, and increased treatment satisfaction. Efficacy in patient-physician interactions is a critical component of patient engagement, but factors associated with efficacy in older AF patients have not been well-characterized. Methods: We performed a cross-sectional analysis of baseline data from the ongoing Systematic Assessment of Geriatric Elements in Atrial Fibrillation (SAGE-AF) study, a cohort study of older adults (age ≥ 65) with non-valvular AF and CHA2DS2-VASc score ≥ 2. Participants were classified according to their Perceived Efficacy in Patient-Physician Interactions (PEPPI-5) score (lower: 0-44; higher: 45-50). Logistic regression analysis was used to identify sociodemographic, clinical (AF type, AF treatment, medical comorbidities), and geriatric (cognitive impairment, sensory impairment, frailty, independent functioning) factors associated with lower reported efficacy. Results: Participants (n = 1209; 49% female) had a mean age of 75. A majority (66%) reported higher efficacy in their interactions with physicians. Lower efficacy was associated with persistent AF (adjusted odds ratio [aOR] = 1.52; 95% confidence interval [CI] = 1.13-2.04) and with symptoms of depression (aOR = 1.67; CI = 1.20-2.33) or anxiety (aOR = 1.40; CI = 1.01-1.94). Decreased odds of lower efficacy were observed in participants with chronic kidney disease (aOR = 0.68; CI = 0.50-0.92) and those classified as pre-frail compared to those classified as not frail (aOR = 0.71; CI = 0.53-0.95). Conclusion: Older patients with persistent AF or symptoms of depression or anxiety have decreased efficacy in patient-physician interactions. These individuals merit greater attention from physicians when engaged in shared decision making.