Engaging youth with Type 1 diabetes (T1D) in the self-management of daily tasks and decision- making provides opportunities for positive health outcomes. However, emerging adulthood and care transitions are associated with decreased clinic attendance and diabetes complications. The process of shared decision making (SDM) comprises four key elements – acknowledge, consider, decide, act - and is identified as an optimal approach to making self-management decisions, yet it has been difficult to implement in practice. Personal health record (PHR) technology is a promising approach for overcoming such barriers. Still, today PHRs have yet to root themselves into care and present an opportunity for improvement in SDM and engagement in self-management decision making. Using a sequential two-phased investigation, this dissertation describes how PHRs can be designed to enable SDM and integrated into clinical practice to engage youth with T1D in self-management decision making. Phase 1 proposed an integrated SDM–PHR (e-PHR) functional model justified by youth with T1D (n=7) and providers (n=15) via a user-centered design approach. Located within an interconnected EHR ecosystem, e-PHR integrates 23 PHR functionalities for the SDM process, whereby each SDM element was mapped to PHR functions with a moderate level of agreement between patients and providers (Cohen's kappa 0.60-0.74). The Phase 2 mixed methods, pre-implementation evaluation utilized an online measurement instrument and survey and individual interviews, underpinned by the Normalization Process Theory (NPT), to describe the four cognitive and behavioural processes (coherence, cognitive participation, collective action, reflexive monitoring) known to influence the success of complex socio-technical implementations. Youth with T1D (n=8), providers (n=11), and EHR/clinical leaders (n=8) in British Columbia participated. Reliability tests of NPT-based instrument negated the use of scores for the coherence and reflexive monitoring constructs. Qualitative results indicated that e-PHR made sense as explained by two themes for ‘Coherence’: game changing technology and sensibility of change. Participants strongly agreed (mean score=4.6/5) with ‘Cognitive Participation’ processes requiring an investment in commitment, explained by two themes: sharing ownership of the work and enabling involvement. Weak agreement (mean score=3.6/5) was observed with ‘Collective Action’ processes requiring an investment in effort, explained by one theme, uncovering the challenge of building collective action, and 3 sub-themes, assessing fit, adapting to change together, and investing in the change. Participants appraised e-PHR as explained by two themes for ‘Reflexive Monitoring’: reflecting on value, and monitoring and adapting. Finally, participants strongly agreed (mean score=4.5/5) that e-PHR would positively affect engagement in self-management decision making in two themes: care is efficient and care is person-centred. The establishment of a e-PHR functional model is a precursor to system design requirements. Using the NPT framework, findings from the process evaluation indicated participants invest in sense-making, commitment and appraisal work of this technology. However, successful integration of e-PHR into clinical practice to positively affect engagement in self-management decision making will only be attained when systemic effort is invested to enact it. Further research is needed to explore this gap to inform priorities and approaches for future implementation success. / Graduate

Situado no contexto da qualidade em saúde, este estudo versa sobre a decisão clínica e autonomia do paciente. Parte-se da premissa que, demais da competência técnica profissional e utilização de tecnologia adequada, o respeito aos direitos dos pacientes é atributo essencial à boa qualidade do atendimento médico. Tomando como exemplo a abordagem terapêutica do climatério, foi feita análise qualitativa do processo de decisão clínica, com base nas informações obtidas através de entrevistas semi-estruturadas com médico ginecologistas e com pacientes em fase de climatério. O propósito foi buscar apreender os valores dos médicos e dos pacientes e tentar compreender a lógica de seus comportamentos e atitudes, no que se refere especificamente aos papéis desempenhados por eles nesse processo. Com base nos resultados da análise, discute-se a complexidade da aplicação do princípio da autonomia na prática clínica e apresenta-se uma reflexão sobre a acreditação, como estratégia possível de contribuição a esse processo e à melhoria da qualidade do atendimento médico, por sua grande identificação como os aspectos relativos aos direitos dos pacientes, aos processos de educação permanente e à melhoria contínua da qualidade. / This research is set in the context of quality in health care. The object of the study was the patients role in clinical decision-making, considering that assuring good quality of clinical care requires respect to patients rights, as much as good technology. In order to study the decision process, we chose hormonal replacement therapy in the climacteric through qualitative analysis, based on non-structured interviews with gynecologists and postmenopausal women. The main purpose was the understanding of the values, attitudes and the reasoning employed by physicians and patients. The complexity of application of the bioethical principal of autonomy in daily clinical practice is discussed. The contribution of accreditation to these processes is examined, stressing the relevance of the functions related to patients rights, continuous education and continuous quality improvement.

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