O presente trabalho tem por escopo o estudo do princípio do respeito à autonomia do paciente à luz das recentes alterações trazidas pelo novo CEM Resolução do Conselho Federal de Medicina nº 1.931, de 17 de setembro de 2009 , que prestigia a autonomia do paciente e propõe um novo formato para a relação médico-paciente, impondo novas posturas tanto ao médico como ao paciente, e privilegia sua autodeterminação, ao mesmo tempo em que o obriga à tomada de decisões e à assunção de responsabilidade compartilhada quanto ao processo terapêutico. O objeto do estudo é a nova relação médico-paciente sob o enfoque da autonomia do último, ressaltando-se a responsabilidade compartilhada com o médico em relação à tomada de decisões atinentes ao processo terapêutico, às escolhas terapêuticas, bem como os limites e o conteúdo do poder de decidir e sua autonomia diante da enfermidade e da terminalidade da vida. Nesta hipótese, a reflexão concentra-se nos cuidados paliativos e na adoção de diretivas prévias estatuídas pelo paciente a serem observadas pelo médico e por eventual terceiro responsável por aquele, caso ele não possa manifestar sua vontade durante cuidados paliativos ou situações que revelem iminente terminalidade. / This proposal aims to study the principle of respect for patient autonomy in light of recent changes introduced by the new CEM Resolution of the Federal Medical Council nº 1931 of September 17, 2009 which honors the patients autonomy and proposes a new format for the doctor-patient relationship, imposing new attitudes to both the patient and physician, emphasizes self-determination and, at the same time that forces decision making and the assumption of shared responsibility as to the therapeutic process. The object of the study is the new doctor-patient relationship from the perspective of this autonomy, emphasizing shared responsibility with the physician regarding decisions pertaining to the therapeutic process, the therapeutic choices, and the limits of power and content and their autonomy to decide on the terminally ill and life. In this case, reflection focuses on palliative care and the adoption of policies laid by the previous patient to be seen by the doctor and by any third party responsible for that, if he can not express his desire for palliative care or situations that reveal impending finality.

京都大学 / 0048 / 新制・論文博士 / 博士(医学) / 乙第13327号 / 論医博第2195号 / 新制||医||1044(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 古川 壽亮, 教授 伊達 洋至, 教授 佐藤 俊哉 / 学位規則第4条第2項該当 / Doctor of Medical Science / Kyoto University / DFAM

Children with chronic conditions often participate in therapy, but there is little information about how often or for how long therapy services should be provided. Participatory action research (PAR) methods were utilized in this study and, therefore, involved both parents and occupational and physical therapists throughout the study. Parental interviews were conducted to understand parent perception of self-management and how parents felt their child’s therapist was doing or could do to facilitate self-management, particularly as it related to discharge planning or having their child take a break from ongoing therapy. Through analysis of parent interviews completed by the therapist team and additional parent feedback on priorities for change, there were several concerns parents identified as being important to them when thinking about long-term therapy planning. A shared decision making tool and supporting documents were subsequently developed and tested as a method for enhancing collaborative conversations between the parent and therapist regarding a long-term therapy plan for the child. During follow-up parent interviews, parents were able to clearly voice long-term goals or a long-term plan for their child’s therapy, and they had a more positive reaction to the idea of taking a break from ongoing therapy services. Use of PAR methodology in this study was effective in allowing parents and therapists to co-create a change that both parents and therapists identified as an improvement (during follow-up interviews with parents and a focus group with therapists).

京都大学 / 0048 / 新制・論文博士 / 博士(医学) / 乙第13222号 / 論医博第2169号 / 新制||医||1033(附属図書館) / 京都大学大学院医学研究科医学専攻 / (主査)教授 中山 健夫, 教授 松村 由美, 教授 森田 智視 / 学位規則第4条第2項該当 / Doctor of Medical Science / Kyoto University / DFAM

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The early diagnosis of hearing loss can be a life-changing event for families. Parents are required to make several prompt decisions where they might be overwhelmed with all the information being shared with them. Patient education materials (PEMs) are often provided by clinical health professionals – yet these materials are often written above the average reading level of adults in the United States, thus presenting an additional challenge to many parents. The purpose of this study was to examine the ease of reading cochlear implant (CI) brochures that are provided to parents who are making informed decisions about the management of their child's hearing loss. The CI brochures analyzed include those from three Food and Drug Administration (FDA)-approved CI manufacturers: Advanced Bionics, Cochlear Americas, and MED-EL. Reading grade levels were analyzed using a commercially-available computer software program, applying six readability formulas commonly used to examine PEMs. Analyses revealed that the readability of the three CI brochures exceed the fifth- to sixth-grade reading levels recommended by health literacy experts. Audiology-focused PEMs continue to be created without full consideration of their reading grade level despite health literacy initiatives. Researchers should consider the health literacy skills of the reader when creating or revising PEMs such as CI brochures.

In 2019, diabetes affected approximately 283,000 individuals, aged 20 years or younger, in the U.S. Due to illness symptoms (e.g., hypo/hyperglycemia) and disease-related complications (e.g., nephropathy), individuals report poor health-related quality of life. However, individual-level, family-oriented, and health care system factors may affect perceptions of a child’s overall health status. For example, beliefs of having spent enough time with the doctor may predict proactive health behaviors and perceptions of health. Overall health status may also be indirectly related to time spent in medical conversations. For instance, perceptions of shared decision-making (e.g., exploring pros and cons of treatments together) between families and providers may, in turn, foster family empowerment and resiliency (i.e., ability to adapt, cope, and overcome challenges) in the context of caring for a child with a chronic illness, with positive implications for perceived health status of their child. This study aims to examine the relationships of these variables. At the bivariate level, it was hypothesized that time spent in visits, shared decision making, family resilience, and perceived health status of the child would all be positively related. At the multivariate level, it was hypothesized that doctors working collaboratively with parents and family resilience would serially mediate the relation between time spent in medical visits and perceived health, such that more time spent with the doctor would be associated with perception of collaborative decision making and, in turn, higher levels of resiliency and better overall health status from parents’ perspectives. Utilizing data from the National Survey of Child and Adolescent Health from 2020-2021, this study examined survey responses from 369 parents of children with a reported diabetes diagnosis. Responses were extracted from a larger survey for questions related to time spent with providers in prevention focused visits, collaborative decision-making, family resilience, and health status of the child. Bivariate correlations and serial mediation analyses, per Hayes (2013), were conducted, covarying age, sex, ethnicity of child, health insurance, family structure, income, and education level of parents. Bivariate analyses showed some variables were significantly related in hypothesized directions (p < .05). In serial mediation analyses (10,000 bootstrapped samples), the total effect of time spent with the doctor on overall health status was nonsignificant (t = 0.7767, p = 0.4383), and the direct effect was also nonsignificant when mediators (i.e., collaborative decision making, family resilience) were added (t = 0.805 CI= -0.0044, 0.0122), indicating no serial mediation. Controlling for the effects of the other mediator, a significant indirect effect was found through collaborative decision making (t= 1.9181 CI = 0.0015-0.0940) but not family resilience (t = 0.9565 CI=-0.0059-0.478). This study demonstrates that collaborative decision making with parents mediates the relationship between time spent in preventative health care visits and overall health status. Changes such as policies that incentivize quality of care rather than number of billable visits, or establishment of patient centered medical homes, could support appointments of sufficient length that would allow for collaboration and, in turn, better perceived health status for those affected by diabetes.

BACKGROUND: Contraception is an effective, preference-sensitive intervention that supports quality of life, management of health, and self-determination. Contraception is used by 99% of people assigned female at birth with an average of 3.4 methods used across their lifespan. Providers counsel patients on contraception and patients want to be counselled. Shared decision-making frameworks promote using decision aids (DA) during counseling as best practice. Existing DAs lack transparency in their development methodologies and evaluation results and may not facilitate patient-centered care. AIM: Create a contraception DA and accompanying contraception method information sheets (MIS) that are informed by patients’ values, align with international standards, meet health literacy and accessibility guidelines, and are evaluated by patients and providers to be acceptable, quality, and feasible to use during contraceptive counseling. METHODOLOGY: To create the DA/MIS, (1) literature was reviewed on contraceptive counseling frameworks, DAs, patients’ contraceptive preferences, health literacy, accessibility, user-centered design, and validated patient education material quality measures, (2) results were reviewed from a patient focus group and provider meeting where they defined user requirements, and (3) evidence-based contraceptive information was synthesized. Once created, an exploratory sequential mixed-methods study iteratively refined the DA/MIS after each data collection phase: (1) provider focus groups and survey, (2) patient focus groups and survey, (3) observed patient testing during counseling followed by an interview and survey, (4) expert patient and provider review, and (5) provider field testing in clinic followed by an interview and survey. DA/MIS readability levels were assessed. RESULTS: Quantitatively, the DA/MIS were acceptable, quality, and feasible to use during counseling. Qualitatively, the DA/MIS were preferred to verbal-only counseling and other DA/MIS, centered patients’ preferences, increased knowledge, focused on patient autonomy, challenged bias/coercion, improved counseling satisfaction and quality, offered a novel design, and were appealing, inclusive, and accessible. CONCLUSION: This DA/MIS had positive quantitative and qualitative results, offered a novel design aligned with international standards, and had a transparent, rigorous development process aligned with frameworks and validated tools. Initial results show this DA/MIS can support and improve patient-centered contraceptive counseling. / 2026-08-31T00:00:00Z

The No Child Left Behind Act of 2001 and the accountability movement that has engulfed education in the last 20 years have put leadership at the heart of school improvement. Student achievement is affected by multiple factors that must be addressed with unique leadership skills and specialized knowledge. No one person can be responsible for orchestrating the success of each student within a school building. When members of a school community share responsibility for the many activities that contribute to student learning, the work of educational leaders becomes a manageable task. The purpose of this study was to create an operational definition of shared leadership by identifying key descriptors that define the characteristics and behaviors of shared leadership and the aspects of school cultures in which it can be effective. The procedure used to construct a rich description of shared leadership was a three-round Delphi study. A panel of experts was assembled from writers or researchers in the field of leadership and superintendents, principals, and teachers who have practiced shared leadership in the school environment. The first-round Delphi instrument consisted of four open-end questions that asked for key words or phrases that describe the characteristics and behaviors of shared leadership, key words or phrases that describe aspects of school cultures in which shared leadership can be effective, and key words or phrases that describe barriers to shared leadership. In the second round, panelists were asked to rate the compiled responses from round one on a four-point scale. In the third round, panelists received statistical information based on second-round responses. They were allowed to revise opinions once more using a four-point scale. Using the Delphi technique, the panel of experts reached consensus on 84 critical elements of effective shared leadership. An inventory that can be used by schools as a guide for planning, implementing, and evaluating shared leadership in school settings was created from the data. / Ed. D.

Colorectal cancer (CRC) screening in the form of self-sampling enhances participation and early cancer detection. However, CRC screening participation in Sweden is marked by inequality. Moreover, individuals are relatively uninformed about screening procedures, with existing informational channels all exhibiting various limitations. Hence, this project was initiated in collaboration with KI and KTH to develop a digital decision aid for individuals called into CRC screening. This study aims to mark an initial stage of development, with the overarching goal being to improve CRC screening participation rates and support informed decision making aligned with patient values and preferences. Using an approach rooted in the shared decision-making (SDM) model, the study investigates user attitudes and preferences concerning health, digital healthcare services and cancer screening through conducting semi-structured interviews and a thematic analysis. These insights inform user requirements, which are integrated with stakeholder requirements and the current informational landscape to shape the digital decision aid’s information architecture and design. The research identifies various challenges and opportunities for the development of the digital decision aid in a Swedish context, underscoring the importance of adapting the decision aid to user needs and preferences. In subsequent stages of development, the prototype produced by this study should be evaluated through usability testing, and further user research should be conducted to generate more specific user requirements concerning visual and interactional elements.