Search

Background: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs., Methods: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations., Results: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields., Conclusion: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process., (© 2024. The Author(s).)

Background and Objectives: Despite increasing calls for more patient engagement in patient safety, limited knowledge remains on what actually motivates key stakeholders in healthcare to promote patient engagement. We therefore set out to survey key stakeholders of patient engagement in patient safety (i.e., patients, healthcare professionals, and managers). We aimed to identify and explore stakeholder's distinct and shared motives for patient engagement., Methods: A stepwise Delphi method was applied, utilizing semi-structured online interviews for determination of stakeholder motives for patient engagement in patient safety. In a subsequent online survey, statements were evaluated and identified. 34 subject-matter experts from all relevant stakeholder groups completed the online interviews and 33 the online survey. We used content analysis approaches for qualitative and descriptive analyses for quantitative measures. Further, we evaluated the consensus on distinct and shared motives across stakeholder groups., Results: Seven key motives for patient engagement in patient safety were identified. Major motives attributed to patients were: (1) To improve experiences and care outcomes for oneself, as well as (2) for future patients, (3) to express gratitude and appreciation, (4) to cope successfully with treatment-related emotions. A motive shared by patients and professionals was (5) to contribute actively to improved delivery of healthcare. To optimize patient safety, costs, and care processes (6) was shared by professionals and managers. Lastly, (7) to improve patient-provider relationships was jointly shared by all stakeholder groups. For four motives (1, 2, 6, 7) consensus was established., Conclusions: In order to unlock the full potential of future interventions in patient engagement, a deeper understanding of stakeholder motives is essential. We identified a set of distinct and shared motives for patient engagement across relevant stakeholder groups. Our findings may inform future interventions in patient engagement that take account of the motivational foundations and aspirations of all stakeholders who are key for the success for collaborative patient safety and care improvements., Trial Registration: ID DRKS00031837 (Date May 8, 2023)., (© 2024. The Author(s).)

Competing Interests: Conflict of interest: none declared.

Background: To enable personalized treatment and shared decision-making in chronic care, relevant health information is collected. However, health information is often fragmented across hospital information systems, digital health apps, and questionnaire portals. This also pertains to hemophilia care, in which scattered information hampers integrated care. We intend to co-design a nationwide digital personal health record (PHR) for patients to help manage their health information. For this, user perspectives are crucial., Objective: This study aims to assess patients' and health care providers' perspectives regarding the use of a PHR in hemophilia care in the Netherlands, required functionalities, and expectations and concerns., Methods: In this semistructured interview study, 19 pediatric and adult persons with hemophilia, parents, and women with other inherited bleeding disorders, as well as 18 health care providers working within and outside of hemophilia treatment centers, participated. Perspectives of patients and providers were explored separately. To explore requirements, participants were asked to prioritize functionalities., Results: Participants expected a PHR would increase the transparency of health information, improve patients' understanding of their illness, and help the coordination of care between health care providers and institutions. Prioritized functionalities included the integration of relevant health information and patient-entered data. Formulated expectations and concerns focused on 4 themes: usability, safety, inclusiveness, and implementation. While patients expressed worries over medicalization (ie, more confrontational reminders of their illness), providers were concerned about an increased workload., Conclusions: People with hemophilia, their parents, and health care providers welcomed the development of a PHR, as they expected it would result in better coordinated care. Formulated expectations and concerns will contribute to the successful development of a PHR for persons with hemophilia, and ultimately, for all persons with a chronic condition., (©Martijn R Brands, Lotte Haverman, Jelmer J Muis, Mariëtte H E Driessens, Stephan Meijer, Felix J M van der Meer, Marianne de Jong, Johanna G van der Bom, Marjon H Cnossen, Karin Fijnvandraat, Samantha C Gouw. Originally published in JMIR Human Factors (https://humanfactors.jmir.org), 03.09.2024.)

It is perhaps most useful to approach the Doctor-Patient relationship (DPR) by admitting that it's complicated. We review some of the strategies that have been employed to mitigate this complexity, zeroing in on one that promises to capture the main features of the DPR without eliminating some of its more important, existential components; pieces of the puzzle that must be retained if we are to avoid oversimplification and the errors that can arise by ignoring important foundational properties. We believe that a useful way to look at the DPR and to capture essential features that must be balanced in the process is provided by Partnership Theory and its definition in terms of the so-called domination and partnership systems. We apply this theory to the DPR and investigate the implications of this application to health care. We see that in the absence of mitigating circumstances, adoption of the patient-as-partner model serves healthcare well and is flexible enough to accommodate circumstances that dictate modifications., (© 2024. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Shared decision-making supports women's choices in pregnancy. Women with high body mass index (≥35 kg/m 2 ) experience a high rate of interventions in pregnancy, labour, and birth, providing an opportunity for clinicians to implement shared decision-making in practice. However, weight stigma may limit women's opportunities for shared decision-making., Aim: To understand how pregnant women with high body mass index perceive their involvement in antenatal decision-making, including whether weight stigma influences their experience., Methods: Women with high body mass index were recruited via purposive sampling from two sites in Melbourne, Australia. Semi-structured interviews were audio-recorded, transcribed, and analysed using reflexive thematic analysis., Findings: Ten pregnant women consented to participate. Three themes and six sub-themes were identified. These were: 1) Trusting the system, 2) Who takes the lead?, and 3) Defying disease., Discussion: Shared decision-making is limited for women with high body mass index in antenatal care, and weight stigma is experienced by women. Clinical practice recommendations relating to excess weight have the potential to further limit women's involvement in decision-making if adequate support is not provided to ensure women's understanding and involvement in care., Conclusion: Women's involvement in care is a central component of shared decision-making and it is currently limited for women with high body mass index. Transparency regarding the rationale for recommendations is required, and further work must be done to address the influence and impact of weight stigma on the care of women with high body mass index., Competing Interests: Conflict of Interest Linda Sweet has editorial duties with this journal. To reduce any real or perceived conflict of interest, she had no role in the processing or peer review of this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Background: Implementation of shared decision-making in antenatal care has had limited exploration., Objective: To assess what is known about shared decision-making in antenatal care., Search Strategy: Five databases were searched (1997-2022) limited to English language studies from OECD countries., Data Collection and Analysis: A data collection table was constructed with findings from 32 papers. A narrative synthesis was conducted with subsequent thematic analysis of included papers., Main Results: Four areas of decision-making were identified with six themes revealing enablers and barriers to shared decision-making in antenatal care., Conclusion: Implementation of shared decision-making requires continuity, time and personalisation of care., (© 2023 The Authors. Birth published by Wiley Periodicals LLC.)

Background: Patient participation is fundamental in nursing care and has yielded benefits for patient outcomes. However, despite their compassionate care approach, nurses do not always incorporate patients' needs and wish into evidence-based practice, quality improvement or learning activities. Therefore, a shift to continuous quality improvement based on evidence-based practice is necessary to enhance the quality of care. The patient's opinion is an essential part of this process. To establish a more sustainable learning culture for evidence-based quality improvement, it is crucial that nurses learn alongside their patients. However, to promote this, nurses require a deeper understanding of patients' care preferences., Objective: To explore patients' needs and wishes towards being involved in care processes that nurses can use in developing an evidence-based quality improvement learning culture., Methods: A qualitative study was conducted in two hospital departments and one community care team. In total, 18 patients were purposefully selected for individual semi-structured interviews with an average of 15 min. A framework analysis based on the fundamental of care framework was utilised to analyse the data deductively. In addition, inductive codes were added to patients' experiences beyond the framework. For reporting this study, the SRQR guideline was used., Results: Participants needed a compassionate nurse who established and sustained a trusting relationship. They wanted nurses to be present and actively involved during the care delivery. Shared decision-making improved when nurses offered fair, clear and tailored information. Mistrust or a disrupted nurse-patient relationship was found to be time-consuming and challenging to restore., Conclusions: Results confirmed the importance of a durable nurse-patient relationship and showed the consequences of nurses' communication on shared decision-making. Insights into patients' care preferences are essential to stimulate the development of an evidence-based quality improvement learning culture within nursing teams and for successful implementation processes., (© 2024 The Authors. Scandinavian Journal of Caring Sciences published by John Wiley & Sons Ltd on behalf of Nordic College of Caring Science.)

This article explores the multifaceted concept of cardiovascular disease (CVD) patients' empowerment, emphasizing a shift from compliance-oriented models to active patient participation. In recognizing that cardiovascular disease is a paramount global health challenge, this study illuminates the pressing need for empowering patients, underscoring their role as active participants in their healthcare journey. Grounded in 5P-Medicine principles-Predictive, Preventive, Participatory, Personalized, and Precision Medicine-the importance of empowering CVD patients through analytics, prevention, participatory decision making, and personalized treatments is highlighted. Incorporating a comprehensive overview of patient empowerment strategies, including self-management, health literacy, patient involvement, and shared decision making, the article advocates for tailored approaches aligned with individual needs, cultural contexts, and healthcare systems. Technological integration is examined to enhance patient engagement and personalized healthcare experiences. The critical role of patient-centered design in integrating digital tools for CVD management is emphasized, ensuring successful adoption and meaningful impact on healthcare outcomes. The conclusion proposes vital research questions addressing challenges and opportunities in CVD patient empowerment. These questions stress the importance of medical community research, understanding user expectations, evaluating existing technologies, defining ideal empowerment scenarios, and conducting a literature review for informed advancements. This article lays the foundation for future research, contributing to ongoing patient-centered healthcare evolution, especially in empowering individuals with a 5P-Medicine approach to cardiovascular diseases., Competing Interests: Ivan Miguel Pires is an Academic Editor for PeerJ Computer Science., (© 2024 Denysyuk et al.)

Introduction: Digital mental health interventions (DMHIs) overcome traditional barriers enabling wider access to mental health support and allowing individuals to manage their treatment. How individuals engage with DMHIs impacts the intervention effect. This review determined whether the impact of user engagement was assessed in the intervention effect in Randomised Controlled Trials (RCTs) evaluating DMHIs targeting common mental disorders (CMDs)., Methods: This systematic review was registered on Prospero (CRD42021249503). RCTs published between 01/01/2016 and 17/09/2021 were included if evaluated DMHIs were delivered by app or website; targeted patients with a CMD without non-CMD comorbidities (e.g., diabetes); and were self-guided. Databases searched: Medline; PsycInfo; Embase; and CENTRAL. All data was double extracted. A meta-analysis compared intervention effect estimates when accounting for engagement and when engagement was ignored., Results: We identified 184 articles randomising 43,529 participants. Interventions were delivered predominantly via websites (145, 78.8%) and 140 (76.1%) articles reported engagement data. All primary analyses adopted treatment policy strategies, ignoring engagement levels. Only 19 (10.3%) articles provided additional intervention effect estimates accounting for user engagement: 2 (10.5%) conducted a complier-average-causal effect (CACE) analysis (principal stratum strategy) and 17 (89.5%) used a less-preferred per-protocol (PP) population excluding individuals failing to meet engagement criteria (estimand strategies unclear). Meta-analysis for PP estimates, when accounting for user engagement, changed the standardised effect to -0.18 95% CI (-0.32, -0.04) from - 0.14 95% CI (-0.24, -0.03) and sample sizes reduced by 33% decreasing precision, whereas meta-analysis for CACE estimates were - 0.19 95% CI (-0.42, 0.03) from - 0.16 95% CI (-0.38, 0.06) with no sample size decrease and less impact on precision. DISCUSSION: Many articles report user engagement metrics but few assessed the impact on the intervention effect missing opportunities to answer important patient centred questions for how well DMHIs work for engaged users. Defining engagement in this area is complex, more research is needed to obtain ways to categorise this into groups. However, the majority that considered engagement in analysis used approaches most likely to induce bias., (© 2024. The Author(s).)

This is an observational study in which we evaluated current levels of risk communication (RC) among gynaecological oncologists and their view on the Mapping All Patient Probabilities in Numerical Graphs (MAPPING) application as a possible tool to facilitate RC and shared decision-making (SDM). In part A, we audio-recorded 29 conversations between gynaecological oncologists and patients when discussing treatment options. In part B, interviews were performed with eight gynaecological oncologists.RC and SDM were measured using two observer-based measures, that is, the RC content (RCC) tool (scale 0-2) and the OPTION-5 instrument (scale 0-100). We used CollaboRATE questionnaire (scale 0-10) and a self-developed survey to assess patient-reported RC and SDM. In part B, we evaluated physicians' attitudes regarding the use of the MAPPING application to support RC. Patients were minimally involved in the decision-making process (OPTION-5 25.9%±13.4 RCC 0.21±0.18). Patient-reported SDM was high (mean collaboRATE score 9.19±1.79) and patients preferred receiving numeric information, whereas most physicians used qualitative risk terms rather than exact numbers. In part B, gynaecologists had a positive attitude towards the MAPPING application. However, they stated that the app was difficult to use improvement of layout and better implementations are needed., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: In recent decades, there has been a growing emphasis on involving patients in healthcare decision-making, driven by political, ethical, and research considerations. Although patient involvement is associated with improved health outcomes, understanding patient preferences regarding their role in decision-making is crucial for effective interventions. The Control Preferences Scale (CPS) measures patient preferences along a continuum from passive to active participation. However, its application in Denmark necessitates translation and cultural adaptation., Methodology: This study aimed to translate and culturally adapt the CPS for Danish use across diverse healthcare settings: acute care, cancer care, elective surgery, chronic medical treatment, and parental involvement in pediatric care. Following a cross-sectional design, the translation process was systematically planned and executed using Beaton's guidelines, including the five stages: forward and back translation, synthesis, expert review, and pre-testing., Results: The translation and adaption process was carried out successfully. Few linguistic challenges were identified and resolved by the expert review. The findings of the pre-testing indicated high acceptability and usability of the adapted CPS among 152 Danish patients and parents. The collaborative role emerged as the most preferred across settings (69.8%), with passive roles more prevalent among cancer patients (30%) and parents waiting with their child to see a pediatrician (23.3%). Notable, more women preferred collaborative or active roles (83.9%) than men (73.9%). The content validity assessment yielded positive feedback, affirming the relevance and comprehensiveness of the CPS., Conclusions: In summary, the adaptation and validation of the CPS for Danish use proved successful, providing a valuable tool for assessing patient's role preferences in healthcare decision-making. However, future studies are recommended to ensure construct validity and reliability through psychometric testing., (© 2024. The Author(s).)

Background & Need for Innovation: Patients can be actively involved in various aspects of health professions education (HPE). However, learners in HPE graduate programs have minimal opportunities to learn how to involve patients in HPE., Steps Taken for Development and Implementation of Innovation: We designed, implemented, and evaluated a 12-week asynchronous, online graduate course that provides learners such opportunities. We established an advisory committee of patients, clinician-educators, and professors to guide course development. Using Thomas et al.'s framework, we established the general and targeted need for the course, identified the learning outcomes, determined the learning activities, and implemented and evaluated the course. It is offered within the asynchronous, online Diploma and Master in HPE at the University of Ottawa, Canada., Evaluation of Innovation: Forty learners participated in the course between 2020 and 2022. Using a survey with closed- and open-ended items, learners reported satisfaction with all course components, and they valued the patient narrative videos created for the course. After course completion, learners reported that the course is relevant to their professional practice. They also reported confidence in their abilities to actively involve patients in HPE. Based on the culminating assignment assessment data, learners attained course expectations., Critical Reflection: Although patients who participated in the narrative videos represented diverse age ranges, health conditions, and experiences in HPE, they were often Caucasian, educated, and from a higher socio-economic background. Also, the level of engagement between patients and learners in the course was limited. We are committed to improving our own patient involvement efforts., Competing Interests: The authors have no competing interests to declare., (Copyright: © 2024 The Author(s).)

Introduction: Shared decision-making (SDM) is on the NHS policy agenda, and the preferred model for preference-sensitive decisions. This study establishes baseline patient-perceived SDM in a radical head and neck cohort, and explores patients' views on SDM in a large, specialist trust., Methods: An SDM questionnaire was distributed to all radical head and neck radiotherapy patients (N = 165), June-December 2023. This combined a well-validated instrument for measuring SDM from the patient perspective, SDM-Q-9, with additional questions exploring patient views. Thematic analysis was used to construct and interpret themes., Results: 65/165 (39%) questionnaires were returned. SDM-Q-9 mean standardised score was 78.6 (SD 26.3). There was a moderate ceiling effect (26%). Scores were not sensitive to sex (p = 0.64) or age (ρ = 0.1). Higher levels of SDM were perceived by participants who stated SDM was very important (51/65, 79%) than somewhat or not at all important (82.4 vs. 62.7; p = 0.02; Cohen d = 0.75). Individuals who discussed their personal priorities with the clinician (46/65, 70.8%), were more likely to be very satisfied with their involvement in SDM (89.1% vs. 52.9%). Thematic analysis generated three themes: Control, Desire for Transparency and Understanding, and Doctor as the Expert., Conclusion: Patient-perceived SDM levels are high for head and neck patients. Participants who value SDM also perceive higher levels of SDM. Patient satisfaction increases when individuals discuss their personal priorities. The modest response rate and self-selection bias affect the generalisability of the results. Only radiotherapy patients were included; those who chose alternative treatment may perceive different levels of SDM. The moderate ceiling effect may limit the use of SDM-Q-9 to measure impact of future interventions to improve SDM., Implications for Practice: SDM-Q-9 should be combined with an objective, observer measure of SDM., Competing Interests: Conflict of interest statement None., (Copyright © 2024 The College of Radiographers. Published by Elsevier Ltd. All rights reserved.)

Objective: There are compelling ethical and practical reasons for patient engagement in research (PEIR), however, evidence for best practices remains limited. We investigated PEIR as implemented in CAPTURE ALS, a longitudinal observational study, from study inception through the first 2.5 years of operations., Methods: Data were drawn from three engagement initiatives: a community-led letter-writing campaign; consultation with patient and caregiver focus groups; and a study-embedded 'participant partner advisory council' (PPAC). Data were derived retrospectively from study documentation. We used the International Association of Public Participation (IAP2) participation spectrum as a framework for investigation., Results: 2401 letters from community members to the Canadian government affirmed study objectives and advocated for funding. Feedback from focus group consultation influenced study design and supported the study's data-sharing plan. PPAC collaboration shaped all aspects of the study. Contributions included: co-creation of governance documents, input on study protocols and public-facing communication, and development of engagement webinars for study participants and feedback surveys. Effective communication practices fostered collaboration and helped avoid tokenistic engagement. CAPTURE ALS encompassed all IAP2 participation levels., Conclusions: CAPTURE ALS was shaped by meaningful engagement initiatives over the course of the study. Lessons learned included: begin early and embed PEIR within research; build relationships and foster mutual learning; be flexible, open to adaptation, and seek diversity. Primary challenges included funding for early implementation, time needed to maintain relationships, and attrition due to disease progression. All IAP2 participation levels contributed to meaningful PEIR. 'Empowerment' was demonstrated through advocacy.

Introduction: Quality in health services is increasingly associated with enabling patients to participate in their own health and healthcare by recognising their resources and needs. Despite a growing recognition as to whether such participation is enabled, little is known regarding opportunities for preference-based patient participation in orthopaedic care., Aims: To investigate preference-based participation for patients in orthopaedic care due to hip surgery., Methods: Patients across 17 Swedish orthopaedic units who had had hip surgery, due to hip fracture or osteoarthritis, January-April 2021 were invited to complete the validated 4Ps questionnaire. Of 1514 patients, 458 patients returned the questionnaire with reports on their preferences for and experiences of participation. Each of the 4Ps' 12 items were analysed separately using descriptive and comparative statistics., Results: A complete match in preferences for, and experiences of, participation was achieved with variation between items for 41%-50% of the patients; if almost matches were included, this occurred for 57%-77% of the patients. Less participation than preferred was most common in terms of having had reciprocal communication, opportunities for partaking in planning, and in learning how to manage symptoms/issues. Hip fracture surgery was significantly associated with experiencing lower levels of participation than preferred., Conclusion: Though standardised care promotes efficient hip surgery care, our study suggests a need for more person-centred opportunities to engage. A discrepancy was noted between patients' resources and preparation for their participation in and beyond the hip surgery process, particularly for self-care activities, calling for better use of nursing resources. ID: NCT04700969 with the U.S National Institutes of Health Clinical Registry., Competing Interests: Declaration of competing interest The authors declare no known competing financial interest or personal relationship that could have influenced the work reported in this paper. The 4Ps is protected by copyright but may be available for free after discussion with the last author., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Purpose: Prenatal genetic screens and diagnostic tests are vital components of prenatal care. The first prenatal visit is a critical time in the decision-making process when patients decide whether to use these tests in addition to address a series of other essential prenatal care aspects. We conducted this study to examine the role of a shared decision-making (SDM) instrument to support these discussions., Methods: We conducted a cluster randomized controlled trial of patients allocated to an SDM tool or usual care at their first prenatal visit. Participants completed a baseline survey to measure decision-making needs and preferences. Direct observation was conducted and analyzed using the OPTION scale to measure SDM during prenatal genetic testing discussions., Results: Levels of SDM were similar across groups ( P  = 0.081). The highest levels of SDM were observed during screening test discussions (NEST 2.4 ± 0.9 v. control 2.6 ± 1.0). Lowest levels were observed in discussions about patients' preference for risk versus diagnostic information (NEST 1.0 ± 1.1 v. control 1.2 ± 1.3)., Conclusion: Study findings demonstrate the need for targeted patient-focused and provider-focused efforts to improve SDM to enhance patients' informed decision making about these options. Importantly, patients' baseline knowledge and attitudes need to be considered given that patients with less knowledge may need more carefully crafted communication., Highlights: Choices about whether, when, and how to use prenatal genetic tests are highly preference-based decisions, with patients' baseline attitudes about these options as a major driver in health care discussions.The decision-making process is also shaped by patient preferences regarding a shared or informed decision-making process for medical decisions that are highly personal and have significant ramifications for obstetric outcomes.There is a need to develop targeted efforts to improve decision making and enhance patients' ability to make informed decisions about prenatal genetic tests in early pregnancy., Competing Interests: The authors declared the following potential conflicts of interest with respect to the research, authorship, and/or publication of this article: Susannah Rose, consulting ethicist, National Pharmacy and Medical Policy Committee & National Pharmacy and Therapeutics Committee, Blue Cross Blue Shield Association (nonprofit); Bo Hu, National Institutes of Health and Patient-Centered Outcomes Research Institute. All other authors declare no conflicts of interest.

Background: Informed consent is a relevant backdrop for conducting clinical trials, particularly those involving children. While several factors are known to influence the willingness to consent to pediatric anesthesia studies, the influence of study design on consenting behavior is unknown., Aims: To quantify the impact of study complexity on willingness to consent to pediatric anesthesia studies., Methods: We conducted a vignette-based interview study by presenting three hypothetical studies to 106 parents or legal guardians whose children were scheduled to undergo anesthesia. These studies differed in level of complexity and included an example of a prospective observational study, a randomized controlled trial, and a phase-II-pharmacological study. Primary outcome was the willingness to consent, using a 5-point Likert scale ranging from "absolutely consent" to "absolutely decline". Secondary outcomes were the effects of child-related (such as sex, age, previous anesthesia, research exposure) and proxy-related factors., Results: Response probabilities for "absolute consent" were 90.9% [95% CI 85.3-96.5] for the observational study, 48.6% [95% CI 38.3-58.9] for the randomized controlled trial, and 32.7% [95% CI 23.9-41.6] for the phase-II-pharmacological study. Response probabilities for "absolutely decline" were 1.6% [95% CI 0.3-2.8], 14.4% [95% CI 8.3-20.5], and 24.7% [95% CI 16.6-32.7], respectively. Significant effects were found for previous research exposure (OR = 0.486 [95% CI 0.256-0.923], p = .027), older age (OR = 0.963 [95% CI 0.927-0.999], p = .045) and the gender of the parent or legal guardian, as mothers were less willing to consent (OR = 0.234 [95% CI 0.107-0.512], p < .001)., Conclusions: Willingness to consent decreased with increasing level of study complexity. When conducting more complex studies, greater efforts need to be made to increase the enrollment of pediatric patients., (© 2024 The Authors. Pediatric Anesthesia published by John Wiley & Sons Ltd.)

Objective: To gain insight into the emotions, cognitions, and behaviours experienced by people with chronic low back pain (CLBP) undergoing invasive treatment in a pain unit., Design: A cross-sectional qualitative study based on individual interviews. This study included patient involvement in its design and development., Methods: An interpretative phenomenological approach was adopted to understand the multidimensional experience of patients. The interview script was a translated, adapted, and expanded version of the one proposed by Cognitive and Functional Therapy. A mixed coding method was applied to structure the interviews. Three themes were created, with the three most frequently reported emotions, cognitions, and behaviours as subthemes. A patient with CLBP approved the initial protocol and the aim of the study. Subsequently, the patient contributed questions to the interview script, checked the coding process, and approved the final version of the manuscript., Results: Twenty-two patients undergoing epidural infiltrations in a pain unit were interviewed. (i)"Fears", (ii)"Frustration", and (iii)"Worry" were the three most commonly expressed emotions. Cognitions related to (i)"Pain predictability", (ii)"Pain description and perception", and (iii)"Pain interference/disability" were also widely reported. The theme "Behaviours" was composed of the following subthemes: (i)"Strategies for managing symptoms", (ii)"Social behaviours", and (iii)"Strategies for coping with daily tasks". Noteworthily, cognitions related to the (i)"Diagnosis", (ii)"Health system attention", and (iii)"Medical prescriptions" arose from questions provided by patient involvement., Conclusion: Patients with CLBP expressed a wide variety of emotions, cognitions, and behaviours that must be considered by health professionals with the goal of providing the best patient-centred care., Competing Interests: Declaration of competing interest None., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Aim: This scoping review aims to synthesize findings from fourteen selected articles to provide a comprehensive understanding of patient participation in mental healthcare., Method: The review analyzed articles employing various qualitative methodologies, including interviews and observations, to explore patient and healthcare professional perspectives. Articles were selected based on their relevance to the topic of patient participation in mental health care., Results: The analysis revealed diverse perspectives on patient participation. Patients' preferences varied, with some preferring shared decision-making while others preferred minimal involvement. Barriers to shared decision-making included fear of judgment and substance misuse concerns. Strategies to manage disagreements and foster trusting relationships were identified. Challenges in implementing patient and public involvement in mental health services were noted, including stigma and inadequate professional training. Interprofessional collaboration was deemed fundamental, although fragmented care pathways and communication breakdowns persisted. Structural conditions and professional expectations significantly influenced patient participation, with a paternalistic approach perpetuating power imbalances., Conclusion: Despite challenges, the findings underscored the importance of empowering patients in treatment decision-making, promoting collaborative relationships, and addressing barriers to enhance patient-centered care in mental health settings. Insights from this review contribute to the discourse on patient-centered care, emphasizing the need for holistic approaches prioritizing patient dignity and well-being.

For many years, attempts have been made to incorporate service users into psychiatric nursing education, particularly in European countries and Australia. In Asian countries, however, concrete examples of this are notably scarce, and the limited instances of implementation lack the necessary systematic organisation and long-term sustainability. This study systematically planned and implemented a psychiatric nursing curriculum that integrated service users in Korea. It explored the experiences of 14 nursing students and four service users (who participated as instructors) who participated in these classes. Content analysis was performed on the results of focus group interviews with the participants. Owing to the participation of service users in the programme, students focused more on the patients as human beings, with the contexts of their individual lives, rather than on their diseases. The process facilitated a deeper grasp of person-centred psychiatric nursing and heightened student engagement in the learning process. The service users' experiences as instructors breathed new meaning into their psychiatric distress as an opportunity for new possibilities and helped them view themselves in a positive light, as members of society with self-esteem. They made great efforts to perform well in their role as instructors. These findings provide substantial evidence to support the expanded and sustained implementation of service user participation in future psychiatric nursing education. Establishing a national consortium to foster and support service user instructors could greatly improve psychiatric nursing education and related outcomes., (© 2024 John Wiley & Sons Australia, Ltd.)

Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors received no financial support for the research, authorship, and/or publication of this article.

Introduction: At mammography screening invitation, the Danish Health Authority recommends women aged 50 to 69 y make an informed decision about whether to be screened. Previous studies have shown that women have very positive attitudes about screening participation. Therefore, we hypothesized that Danish women may already have decided to participate in breast cancer screening prior to receiving their screening invitation at age 50 y., Methods: We invited a random sample of 2,952 Danish women aged 44 to 49 y (prescreening age) to complete an online questionnaire about barriers to informed screening decision making using the official digital mailbox system in Denmark. We asked participants about their screening intentions using 3 different questions to which women were randomized: screening presented 1) as an opportunity, 2) as a choice, and 3) as an opportunity plus a question about women's stage of decision making. All women completed questions about background characteristics, intended participation in the screening program, use and impact of screening information, and preferences for the decision-making process. Data were linked to sociodemographic register data., Results: A total of 790 (26.8%) women participated in the study. Herein, 97% (95% confidence interval: 96%-98%) reported that they wanted to participate in breast cancer screening when invited at age 50 y. When presented with the choice compared with the opportunity framing, more women rejected screening. When asked about their stage of decision making, most (87%) had already made a decision about screening participation and were unlikely to change their mind., Conclusion: In our study, almost all women of prescreening age wanted to participate in breast cancer screening, suggesting that providing information at the time of screening invitation may be too late to support informed decision making., Highlights: Almost all women of prescreening age (44-49 y) in our study wanted to participate in the Danish national mammography screening program starting at age 50 y.Early decision making represents a barrier for informed decision making as women in this study had intentions to participate in breast cancer screening prior to receiving an official screening invitation, and therefore, providing information at the time of screening invitation may be too late to support informed decision making.Very few women rejected screening participation; however, more women rejected screening when the information was framed as an active choice between having or declining breast cancer screening (continue with usual care) compared with presenting only the option of screening with no description of the alternative.Two-thirds of women reading the screening information in this study had unchanged attitudes toward screening after reading the presented information., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article. The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Financial support for this study was provided entirely by the Department of Public Health, Aarhus University. The funding agreement ensured the authors’ independence in designing the study, interpreting the data, writing, and publishing the report.

Cardiovascular disease (CVD) remains the leading cause of death globally. Although the burden of CVD risk factors tends to be lower in women, they remain at higher risk of developing complications when affected by these risk factors. There is still a lack of awareness surrounding CVD in women, both from a patient's and a clinician's perspective, especially among visible minorities. However, women who are informed about their heart health and who engage in decision-making with their healthcare providers are more likely to modify their lifestyle, and improve their CVD risk. A patient-centered care approach benefits patients' physical and mental health, and is now considered gold-standard for efficient patient care. Engaging women in their heart health will contribute in closing the gap of healthcare disparities between men and women, arising from sociocultural, socioeconomic, and political factors. This comprehensive review of the literature discusses the importance of engaging women in decision-making surrounding their heart health and offers tools for an effective and culturally sensitive patient-provider relationship., Competing Interests: The authors declare there are no competing interests.

Menopausal hormone therapy (MHT) is an effective treatment for menopause-related symptoms. Menopause management guidelines recommend a personalized approach to menopause care, including MHT use. Decision-making around menopause care is a complex, iterative process influenced by multiple factors framed by perspectives from both women and healthcare providers (HCPs). This narrative review aims to summarize evidence around factors affecting decision-making regarding menopause-related care. For HCPs, the provision of individualized risk estimates is challenging in practice given the number of potential benefits and risks to consider, and the complexity of the data available, especially within time-limited consultations. Women seeking menopause care have the difficult task of making sense of the benefit versus risk profiles to make choices in line with their decisional needs influenced by sociocultural/economic, educational, demographic, and personal characteristics. The press, social media, and influential celebrities also impact the perception of menopause and decision-making around it. Understanding these factors can lead to improved participation in shared decision-making, satisfaction with the decision and decision-making process, adherence to treatment, reduced decisional regret, efficient use of resources, and ultimately long-term satisfaction with care., (© 2024 The Author(s). Annals of the New York Academy of Sciences published by Wiley Periodicals LLC on behalf of The New York Academy of Sciences.)

The objective of this study was to investigate the engagement between healthcare professionals and users of mental healthcare at the individual level in a mental health hospital. A qualitative research design with purposive sampling was adopted. Five audio-recorded focus group interviews were conducted with nurses and other health professionals at a mental health hospital in Copenhagen and were explored using Fairclough's discourse analysis framework. This study shows how users can be subject to paternalistic control despite the official aim that user involvement be an integral part of the care and treatment offered. As evidenced in discussions by health professionals, the users were involved in plans based on conditions determined by the health professionals who were predominantly focused on treating diseases and enabling the users to live a life independent of professional help. Our results can contribute to dealing with the challenges of incorporating user involvement as an ideology in mental health hospitals., (© 2024 The Authors. International Journal of Mental Health Nursing published by John Wiley & Sons Australia, Ltd.)

Background: Due to the exclusion of pregnant and lactating people from most clinical trials, there is an incomplete understanding of the risks and benefits of medication use in these populations and therapeutic decision-making is often conducted without adequate evidence. To change this paradigm, it is imperative to understand the perspectives of pregnant and lactating individuals concerning their participation in clinical trials., Objectives: To describe attitudes, perceptions, barriers, and preferences of pregnant and postpartum people in the United States (US) regarding participation in clinical trials and to identify factors influencing participation., Methods: In November 2022, individuals aged ≥ 18 residing in the US who self-identified as pregnant or pregnant within the last 12 months were invited to complete an online survey about their perspectives regarding clinical trial participation. The survey included questions about demographic characteristics, health history, behaviors, and willingness to participate in clinical trials while pregnant and/or lactating. Multivariable logistic regression models were fit to identify predictors of clinical trial participation., Results: Among the 654 respondents, 34.8% and 40.9% reported being likely or extremely likely to participate in a clinical trial for a new medication while pregnant or lactating, respectively; and 24.5% and 41.7% for a new vaccine while pregnant or lactating, respectively. Higher educational attainment (≥ Bachelor's degree) was associated with greater likelihood of clinical trial participation in pregnancy (odds ratio (OR) = 1.50, 95% Confidence Interval (CI): 1.01, 2.25 for medications; OR = 2.00, 95% CI: 1.28, 3.12 for vaccines). Chronic medical conditions were associated with a greater likelihood of participation in clinical trials for vaccines during lactation (OR = 1.59, 95% CI: 1.07, 2.36). The most cited motivator for participation in a clinical trial while pregnant or lactating was anticipated personal medical benefit (85.8% and 75.6%, respectively), while the primary deterrent was possible risk to the fetus or baby (97.9% and 97.2%, respectively)., Conclusions: Willingness of a US sample to participate in clinical trials while pregnant or lactating varied by demographics and health status, with safety to the fetus being a nearly universal concern. These findings have implications for enhancing inclusion of pregnant and lactating people in clinical research and developing effective and equitable recruitment strategies., (© 2024. The Author(s).)

Patient safety (PS) in clinical settings focuses primarily on ensuring active patient participation. However, there is limited understanding of patients' willingness to participate. This study aimed to investigate the association between PS perception, attitude, and inpatients' willingness to participate in PS. This cross-sectional study was conducted with 295 inpatients admitted to a tertiary hospital in South Korea between May and July 2023. Structured questionnaires were used to collect the data. The collected data were subjected to various analytical techniques including descriptive statistics, t tests, Pearson correlation analysis, and multiple regression analysis. Willingness to participate in PS of inpatients showed a statistically significant difference in PS education experience (t = -2.69, P = .008). There was a significant positive correlation between PS perception and attitude (r = .54, P < .001). Additionally, willingness to participate in PS had significant positive correlations with PS perception (r = .62, P < .001) and PS attitude (r = .48, P < .001). The factors influencing willingness to participate in PS were PS perception (β = .51, P < .001) and attitude (β = .20, P < .001). Based on these research findings, it is important to provide inpatients with education and campaigns to improve their perceptions and attitudes toward PS. In addition, it is essential to develop programs that encourage and support patient engagement in PS in hospitals. These efforts will promote active implementation of PS activities by inpatients in clinical settings., Competing Interests: The authors have no funding and conflicts of interest to disclose., (Copyright © 2024 the Author(s). Published by Wolters Kluwer Health, Inc.)

Background: Today, person-centred care is seen as a cornerstone of health policy and practice, but accommodating individual patient preferences can be challenging, for example involving caesarean section on maternal request (CSMR). The aim of this study was to explore Swedish health professionals' perspectives on CSMR and analyse them with regard to potential conflicts that may arise from person-centred care, specifically in relation to shared decision-making., Methods: A qualitative study using both inductive and deductive content analysis was conducted based on semi-structured interviews. It was based on a purposeful sampling of 12 health professionals: seven obstetricians, three midwives and two neonatologists working at different hospitals in southern and central Sweden. The interviews were recorded either in a telephone call or in a video conference call, and audio files were deleted after transcription., Results: In the interviews, twelve types of expressions (sub-categories) of five types of conflicts (categories) between shared decision-making and CSMR emerged. Most health professionals agreed in principle that women have the right to decide over their own body, but did not believe this included the right to choose surgery without medical indications (patient autonomy). The health professionals also expressed that they had to consider not only the woman's current preferences and health but also her future health, which could be negatively impacted by a CSMR (treatment quality and patient safety). Furthermore, the health professionals did not consider costs in the individual decision, but thought CSMR might lead to crowding-out effects (avoiding treatments that harm others). Although the health professionals emphasised that every CSMR request was addressed individually, they referred to different strategies for avoiding arbitrariness (equality and non-discrimination). Lastly, they described that CSMR entailed a multifaceted decision being individual yet collective, and the use of birth contracts in order to increase a woman's sense of security (an uncomplicated decision-making process)., Conclusions: The complex landscape for handling CSMR in Sweden, arising from a restrictive approach centred on collective and standardised solutions alongside a simultaneous shift towards person-centred care and individual decision-making, was evident in the health professionals' reasoning. Although most health professionals emphasised that the mode of delivery is ultimately a professional decision, they still strived towards shared decision-making through information and support. Given the different views on CSMR, it is of utmost importance for healthcare professionals and women to reach a consensus on how to address this issue and to discuss what patient autonomy and shared decision-making mean in this specific context., (© 2024. The Author(s).)

Background: Primary care is an important yet underutilized resource in addressing the overdose crisis. Previous studies have identified important aspects of primary care for people who use drugs (PWUD) and have found patient involvement in healthcare decisions and goal-setting to be especially critical. However, there has been limited research describing the primary care goals of PWUD. In harm reduction settings, where it is imperative that PWUD set their own goals, this research gap becomes especially relevant., Objective: To explore how PWUD navigate primary care with a focus on understanding their primary care goals., Design: A qualitative study using semi-structured interviews., Participants: PWUD currently engaged in primary care at the Respectful and Equitable Access to Comprehensive Healthcare (REACH) Program, a harm reduction-based primary care program in New York City., Approach: Between June 2022 and August 2022, we conducted 17 semi-structured interviews. Informed by phenomenology, transcripts were coded using both inductive and deductive codes and themes were developed using thematic analysis approaches., Key Results: Phenomenological analysis identified four core components that, together, created an experience that participants described as "a partnership" between patient and provider: (1) patient-provider collaboration around patient-defined healthcare goals; (2) support provided by harm reduction-based approaches to primary care anchored in incrementalism and flexibility; (3) care teams' ability to address healthcare system fragmentation; and (4) the creation of social connections through primary care. This holistic partnership fostered positive primary care experiences and supported participants' self-defined care goals, thereby facilitating meaningful care outcomes., Conclusions: To best meet the primary care goals of PWUD, these findings underscore the importance of primary care providers and programs facilitating such partnerships through organizational-level support anchored in harm reduction. Future research should explore how these experiences in primary care affect patient health outcomes, ultimately shaping best practices in the provision of high-quality primary care for PWUD., (© 2024. The Author(s), under exclusive licence to Society of General Internal Medicine.)

Background: Recruiting advanced cancer patients is crucial for nursing research in cancer care. However, nurse researchers often face various socio-cultural challenges, particularly in mainland China, where cultural taboos around death pose significant obstacles. An unexplored constraint in this context is the pivotal role Chinese family members play in patients' healthcare decision-making. This research gap underscores the need for a deeper understanding of Chinese family members' perspectives on the engagement of advanced cancer patients in nursing research., Objective: To explore the perceptions and concerns of family members regarding the recruitment and participation of advanced cancer patients in nursing research., Design: A qualitative descriptive study was conducted., Settings: Three cancer hospitals in mainland China., Participants: A purposive sample of 18 family members, consisting of children or spouses of advanced cancer patients, was recruited as participants., Methods: Semi-structured interviews were conducted to collect data between September 2022 and January 2023. The thematic analysis method was used to analyze the data., Results: Three themes were identified: The absence of prior participation, Family members' reluctance to facilitate patient involvement, and Strategies to encourage patients' future participation. Family members were hesitant to allow their relatives with advanced cancer to engage in nursing research, primarily due to concerns about distressing patients, the use of potential sensitive language, stigma, and the risks involved in participation. To address these concerns, they emphasized the importance of gaining family approval prior to patient enrolment. They highlighted the need of family involvement on behalf of sick relatives in research, advocating for the inclusion of a wide range of patients rather than targeting specific subgroups. They also reiterated the significance of choosing the right time for participation and avoiding using sensitive terms such as 'cancer', 'dying', and 'death' when engaging with patients. Moreover, they proposed the recruitment of patients by trusted professionals, shortening the duration of research activities and simplifying research procedures., Conclusions: This study provides fresh insights into the perspectives of family members concerning the recruitment and engagement of advanced cancer patients in nursing research. It emphasizes the importance of addressing their concerns and recommendations, aiding nurse researchers in developing culturally sensitive recruitment strategies and fostering the inclusive participation of advanced cancer patients in nursing research within the context of family-centered care and cultural taboos surrounding death., Competing Interests: Declaration of Competing Interest None., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Approximately 2% of the German population suffer from psoriasis. HybridVITA has developed a mobile application (app) that enables psoriasis patients to independently document the progression of the disease and the current psychological stress at home. The HybridVITA app was created in close collaboration with user groups to ensure optimal adaptation to their needs. Two interactive workshops were held with the user groups and the technical developers of the app as a core element of the developmental process. The workshops identified the needs and suggestions for improvement of the various user groups and formulated user stories for the further development of the app using the Scrum method. The participatory approach of the workshop enabled the project team to gather valuable practical knowledge at an early stage of development. The team's awareness of potential obstacles during the early stages of the project enabled them to proactively identify and address these issues prior to implementing the app in dermatological care. We are confident that a patient-centered and participatory approach to health app development can provide valuable insights for developers., (© 2024. The Author(s).)

Competing Interests: None declared.

Objective: To explore the relationship between personal characteristics of older adults with multiple chronic conditions (MCCs) and perceived shared decision making (SDM) resp. decisional conflict., Methods: In a video-observational study (N = 213) data were collected on personal characteristics. The main outcomes were perceived level of SDM and decisional conflict. The mediating variable was participation in the SDM process. A twostep mixed effect multilinear regression and a mediation analysis were performed to analyze the data., Results: The mean age of the patients was 77.3 years and 56.3% were female. Health literacy (β.01, p < .001) was significantly associated with participation in the SDM process. Education (β = -2.43, p = .05) and anxiety (β = -.26, p = .058) had a marginally significant direct effect on the patients' perceived level of SDM. Education (β = 12.12, p = .002), health literacy (β = -.70, p = .005) and anxiety (β = 1.19, p = .004) had a significant direct effect on decisional conflict. The effect of health literacy on decisional conflict was mediated by participation in SDM., Conclusion: Health literacy, anxiety and education are associated with decisional conflict. Participation in SDM during consultations plays a mediating role in the relationship between health literacy and decisional conflict., Practice Implications: Tailoring SDM communication to health literacy levels is important for high quality SDM., Competing Interests: Declaration of Competing interest The authors declare that they have no competing interests., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Research Question: From the perspectives of healthcare professionals (HCPs) and people with chronic obstructive pulmonary disease (COPD) known to tertiary care, what influences successful referrals to a pulmonary rehabilitation program (PRP)?, Methods: This cross-sectional qualitative study was informed by a critical realist perspective. We purposively sampled people with COPD and HCPs who deliver COPD care and used semi-structured interviews and focus groups to explore determinants of a successful referral to a PRP. Interviews were recorded, transcribed verbatim and analysed using reflexive thematic analysis., Results: Data were available on 38 HCPs and 15 people with COPD. We generated three core themes pertaining to successful referrals. The first theme was that HCPs should be mindful of how professional responsibilities (such as their personal value and interest in a PRP, their degree of understanding of PRPs, and the organisational culture the PRPs are embedded within) shape decision-making during a therapeutic interaction. The second theme, there's more to me than my COPD, characterised psychological perceptions that shape a person's readiness to engage in a PRP. The third theme, communication is a two-way street that requires careful navigation, characterised the interpersonal dynamic between HCP and patient, and how dedicated conversations about PRPs can encourage successful referrals., Conclusion: Therapeutic interactions that include dedicated conversations about PRPs can foster successful referrals among people with COPD. During these interactions, HCPs should take the time to understand and carefully unpack psychological perceptions whilst imparting value, interest and enthusiasm for PRPs. Doing so can shape patient engagement toward referral success., Competing Interests: Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Objectives: To 1) examine the willingness of residents to undertake shared decision-making and 2) explore whether the willingness to engage in shared decision-making is influenced by the perceived stakes of a clinical situation., Methods: Sequential mixed methods design. Phase One: Family Medicine residents completed IncorpoRATE, a seven-item measure of clinician willingness to engage in shared decision making. Mean IncorpoRATE scores were calculated. Phase Two: We interviewed residents from phase one to explore their perceptions of high versus low stakes situations. Transcripts were analyzed using qualitative content analysis., Results: IncorpoRATE scores indicated a greater willingness to engage in shared decision-making when the stakes of the decision were perceived as low (7.59 [2.0]) compared to high (4.38 [2.5]). Interviews revealed that residents held variable views of the stakes of similar clinical decisions., Conclusion: Residents are more willing to engage in shared decision-making when the stakes of the situation are perceived to be low. However, the interpretation of the stakes of clinical situations varies., Practical Implications: Further research is needed to explore how shared decision making is understood by residents in Family Medicine and when they view the process of shared decision-making to be most appropriate., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Objectives: This study explored the decision-making experiences of patients and their partners or primary caregiver who opted for experimental active surveillance (instead of standard surgery) for the treatment of esophageal cancer., Methods: Seventeen couples participated. Semi-structured interviews were conducted on couples' joint experiences as well as their individual experiences. Preferred and perceived role in the treatment decision-making process was assessed using the adjusted version of the Control Preferences Scale, and perceived influence on the treatment decision was measured using a visual analog scale., Results: Couples reflected on the decision-making process as a positive collaboration, where patients retain their autonomy by making the final decision, and partners offer emotional support. Couples reported about an overwhelming amount and sometimes conflicting information about treatments among different hospitals and healthcare providers., Conclusions: Patients often involve their partner in decision-making, which they report to have enhanced their ability to cope with the disease. The amount and sometimes conflicting information during the decision-making process provide opportunities for improvement., Practice Implications: Couples can benefit from an overview of what they can expect during treatment course. If active surveillance becomes an established treatment option in the future, provision of such overviews and consistent information should become more streamlined., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Introduction: Engagement is a critical component of successful treatment for opioid use disorder (OUD). However, rates of patient engagement in OUD treatment, especially in outpatient settings, are variable and often low. Little is known about the specific strategies members of primary care teams use to initiate and encourage ongoing participation in OUD treatment. In a national cohort of primary care clinics in the U.S., we explored the perspectives of primary care team members on the meaning of and approaches to OUD treatment engagement., Methods: We conducted semi-structured interviews with 35 providers from multidisciplinary primary care teams in an existing national cohort of 13 clinics across seven states. Teams were delivering OUD treatment via the Collaborative Care Model, a model that combines primary care providers (PCP), behavioral health care managers (BHCM) and consulting psychiatric providers (CPP) in a structured way to provide patient-centered, team-based, and measurement-based care. Interview participants included 14 PCPs, 13 BHCMs, and 8 CPPs. Interviews asked open-ended questions about provider experiences and practices that aided or hindered patient engagement in OUD treatment. Interview transcripts were double-coded by trained qualitative researchers and analyzed using a combination of deductive and inductive approaches to identify themes., Results: Two themes emerged that describe provider perspectives on the meaning of engagement: 1) qualifying engagement by the volume of contact with patients, and 2) the need for more multidimensional measures of engagement. Six themes emerged that characterized provider engagement practices: 1) creating an environment of disclosure, 2) normalizing OUD treatment, 3) offering gentle but persistent outreach, 4) providing human connection and encouragement, 5) tailoring treatment to patient needs, and 6) avoiding stigmatizing responses. Analysis identified multiple replicable strategies that providers used to support these engagement practices., Conclusions: Providers consistently apply a range of strategies when trying to engage patients in OUD treatment. Specific engagement strategies used embodied compassion and pragmatism, hallmarks of patient-centered care. Further research is needed to understand the impact of scaling engagement approaches across all care settings., Competing Interests: Declaration of competing interest The authors do not have any personal, professional, or financial conflicts of interest to disclose for this work. The authors did not work with or were otherwise influenced by any external sponsors for this work. Dr. Saxon has received travel support from Alkermes, Inc., consulting fees from Indivior, Inc., and royalties from UpToDate, Inc. Anna Ratzliff, MD, PhD receives royalties from Wiley for her book on integrated care., (Copyright © 2024 Elsevier Inc. All rights reserved.)

Deaf and hard-of-hearing (DHH) patients often encounter difficulties in effective communication with healthcare professionals and are less likely to receive quality medical care. However, DHH populations are understudied in health communication research. This study examined how offline healthcare obstacles and online health consultation impact DHH patients' health, and the mediating roles of patient-centered care (PCC) and patient activation. Data from 323 DHH patients were analyzed using structural equation modeling to test the hypothesized mediation pathway model. Results indicate that offline healthcare obstacles negatively affect DHH patients' perception of patient-centeredness, which reduces their ability and confidence in self-care (conceptualized as patient activation in this study). This reduced patient activation may jeopardize DHH patients' physical and psychological health. Meanwhile, online health consultation is positively associated with PCC, and higher levels of PCC can increase patient activation, contributing to better physical and psychological health. Testing the same model with hearing-abled participants ( n  = 3542) revealed significant differences in these intervening relationships. Overall, this study provides valuable insights into the relationship between DHH patients' healthcare experience and their health outcomes. The findings support interventions that focus on enhancing PCC and patient activation to improve the physical and psychological health outcomes of DHH patients.

Objective: Liver transplant (LT) evaluation is a complex process for patients involving multi-step and parallel medical, surgical, and psychosocial assessments of a patient's appropriateness for transplant. Patients may experience difficulties in navigating the evaluation process, potentially leading to disengagement and resulting in further health decline or death prior to completing evaluation. We aimed to identify and characterize patients' perceptions of undergoing LT evaluation., Methods: We performed fourteen 30-45 min, semi-structured interviews between 3/2021-5/2021 with patients at a large LT center. Using the constant comparison method, we individually noted themes within and across interviews and codes., Results: Our analysis generated 5 thematic dimensions related to patient engagement (i.e., patient involvement/activation): (1) psychological impact of evaluation on patients' lives; (2) information received during evaluation; (3) prior medical experience of the patient; 4) communication between patients and transplant providers; and (5) support system of the patients. Among these dimensions, we identified 8 themes., Conclusion: LT patient engagement is a multi-dimensional component of LT evaluation that incorporates the psychological impact, information received, prior medical experience, communication, and support systems of patients., Practical Implications: This work can inform targeted interventions for increasing patient engagement during the LT evaluation process., Competing Interests: Declaration of Competing Interest The authors declare the following financial interests/personal relationships which may be considered as potential competing interests. Alexandra Strauss reports financial support was provided by National Institute of Diabetes and Digestive and Kidney Diseases. Dorry Segev reports financial support was provided by National Institute of Allergy and Infectious Diseases. If there are other authors, they declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 Elsevier B.V. All rights reserved.)

Objectives: Through the lens of self-determination theory, this quantitative study investigates how patient-provider collaboration through perceived shared decision-making (SDM) and autonomy support impact type 2 diabetes (T2D) outcomes., Methods: We sampled 474 individuals over 18 years old who self-identified as having T2D. Completed and valid responses were received from 378 participants from two separate groups in an online survey. Data was analyzed using the IBM Statistical Package for Social Sciences (SPSS), AMOS package, version 28, and Mplus, version 8.8., Results: Patient-provider collaboration through autonomy support improved treatment satisfaction (β = .16, ρ < .05) and self-management adherence (β = .43, ρ < .001). While collaboration through SDM improved treatment satisfaction (β = .25, ρ < .01), it worsened SM adherence (β = -.31, ρ < .001). The negative impact of SDM on self-management adherence was mitigated by our moderator, coping ability. However, coping ability minimally impacted treatment satisfaction and SM adherence when autonomous support was provided., Conclusions: Autonomy support increases treatment satisfaction and self-management adherence. SDM enhances treatment satisfaction but may adversely affect self-management adherence. The study also suggests that coping ability can mitigate the negative effect of SDM on self-management adherence, although its influence is limited when autonomy support is provided by the provider., Practical Implications: For providers, SDM and autonomy support permits shared power over treatment decisions while fostering independence over self-management tasks. Providers should evaluate patients' coping ability and adapt their approach to care based on the patient's coping capacity., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024 The Authors. Published by Elsevier B.V. All rights reserved.)

Background: Patients can play a key role in delivering safe care by becoming actively involved in their health care. This study aimed at reviewing the literature for evidence of patients' and families' engagement in patient safety in the Eastern Mediterranean Region (EMR)., Methods: We conducted a scoping review of the literature published in English using PubMed, Medline, CINAHL, Scopus, ISI Web of Science, and PsycINFO until June 2023., Results: A total of 9019 studies were screened, with 22 meeting the inclusion criteria. Our review found few published studies of patient and family engagement in patient safety research in the EMR. Thirteen studies explored the attitudes, perceptions, and/or experiences / preferences of patients, families, and healthcare providers (HCPs) regarding patient engagement in patient safety. Nine publications reported patient involvement in patient safety activities at varying levels. Three categories of factors were identified that may affect patient involvement: patient-related (e.g., lack of awareness on their role in preventing harms, unwillingness to challenge HCPs' authority, and cultural barriers); HCP-related (e.g., negative attitudes towards patient engagement, poor patient-provider communication, and high workload); and healthcare setting-related (e.g., lack of relevant policies and guidelines, lack of training for patients, and HCPs, and lack of patient-centered approach)., Conclusion: This review highlighted limitations in the current literature on patient and family engagement in patient safety in the EMR, including both the depth of evidence and clarity of concepts. Further research is needed to explore how to actively involve patients and their families, as well as to determine whether such involvement translates into improved safety in practice., (© 2024. The Author(s).)

Purpose: Patients on oral anticancer agent (OAA) therapies have the autonomy to manage their cancer treatments in home settings. However, patients may not have adequate knowledge, confidence, or ability to effectively manage OAA-related consequences, which can significantly impact their treatment and health outcomes. This study aims to identify the associations between medication beliefs, patient activation, and self-rated health (SRH) among oncology patients taking OAAs and explore the potential mediation effects of patient activation on the relationship between medication beliefs and SRH., Methods: A secondary data analysis was conducted on cross-sectional data from 114 patients who were diagnosed with breast, colorectal, lung, or prostate cancer. Patients completed a self-reported survey including items of SRH, Beliefs about Medicines Questionnaire (BMQ), and Patient Activation Measure (PAM-13). Descriptive statistics, bivariate correlation, hierarchical multiple linear regression, and mediation analysis were conducted., Results: The results indicate that patients taking OAAs have ambivalent attitudes toward medication. Both medication necessity (r =  - 0.27) and concerns (r =  - 0.21) were negatively associated with SRH, while patient activation was positively associated with SRH (r = 0.38). Patient activation had a negative association with medication concerns (r =  - 0.36) and fully mediated the relationship between medication concerns and SRH in patients taking OAAs (indirect effect =  - 0.154, 95% confidence interval, - 0.276 to - 0.060)., Conclusion: The findings highlight the significance of activating patients to better understand and manage their OAAs. It is crucial for oncology professionals to provide multifaceted interventions to promote patient activation with an effort to mitigate the negative impact of medication beliefs on patient-perceived health outcomes., (© 2024. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

This study aims to analyze variables related to patient activation in 78 individuals with visual impairment. The Patient Activation Measure (PAM) scores of participants showed no differences between males and females. It was found that the individuals living in urban areas, and participants with higher income and education levels had higher PAM scores. Still, the difference between the groups was statistically insignificant (p > 0.05). The PAM scores of the visually impaired individuals reflect taking action level of activation (66.51 ± 18.14-PAM level 3). There was a moderately significant relationship between PAM scores and visually impaired individuals' self-management, self-efficacy, healthy life awareness, social relations, and environment (p < 0.001). We found that the variables included in the regression model (marital status, self-management, self-efficacy, healthy life awareness, social relations, and environment) explained 72.2% of the PAM score. Individuals with visual impairment can be given training on self-management, self-efficacy, healthy life awareness, and quality of life associated with social relations and environment to develop positive health behaviors., (© 2024. The Author(s).)

Introduction: Shared decision making (SDM) has become a crucial element on the political agenda and represents a vital aspect of modern healthcare. However, successful implementation of SDM highly depends on the attitude of clinicians towards SDM. The overall aim of our study was to explore the experience of oncologists and nurses with SDM using the Decision Helper, an in-consultation decision aid, at four Danish radiotherapy departments., Methods: Semi-structured interviews were conducted with 20 clinicians. The participants were selected using purposive sampling to include nurses and oncologists, male and female, with different levels of experience with SDM and clinical work. The analysis was a data-driven, iterative process with inductive coding of all interviews and meaning condensation., Results: Two main themes emerged: "Using the Decision Helper changes the consultation" and "Change of attitude among Danish oncologists." Each of the two themes included four elaborative subthemes, which are reported with supporting citations in this paper. In brief, the use of SDM and the Decision Helper should ideally be adjusted to the individual patient and depends highly on the oncologist. The participants described ambitions towards "making the right decision for this patient at this time." The healthcare system, however, has pitfalls that may hinder SDM, e.g., rigid interpretation of guideline-based recommendations., Conclusion: Using an in-consultation Decision Helper has the potential for individualized, structured patient engagement in decision making. There is a need for patient decision aids in clinical guidelines to ensure patient engagement in decision making., Competing Interests: Disclosure The authors have no conflicts of interest to declare., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Background: Older adults with multimorbidity are under-represented in clinical drug trials. Their inclusion will not increase unless they are willing and able to participate. Data on motivators and barriers to participation in trials of new medications of older adults with multimorbidity are needed., Methods: Cross-sectional internet and telephone survey of a nationally representative sample of adults ≥65 years with ≥3 chronic conditions (NORC University of Chicago Amerispeak Panel) conducted from March-April, 2023 to determine motivators and barriers to drug trial participation, described graphically and using statistics., Results: Surveyed 1318 (1142 Internet, 176 phone) with mean age 72.3 ± 6.3 (SD), 52% women; race: 83% White, 10% Black or African American, 5% Hispanic or Latino, 1.1% Asian; 4.4 ± 1.9 chronic conditions (of 16 queried), taking 7.5 ± 3.3 medications. Barriers included fear of side effects (48%), taking too many medications (44%), placebo (44%), mobility (33%), bathroom needs (25%), hearing (19%), eyesight (15%), video visits (33%; higher in women, Black or African-American respondents, and those ≥80 years). Sixty-five percent would join all in-person trials, 49% would join all-video trials. Travel >1 h was difficult for 66%, most difficult for women. Trust was a concern in 25% of Black respondents. Caregiving responsibilities or lack of time were not obstacles. Participants were most likely to consider a drug trial for a problem they have (63%) versus prevention (44%) and if invited by a physician (80%) or University healthcare system (58%). Getting better care was ranked very important (79%) followed by helping others (57%)., Conclusions: Major concerns of older patients with multimorbidity about participation in drug trials are potential side effects, taking too many medicines, and video visits. Physicians have the greatest influence on decisions and in-person visits are preferred. Proposed changes in trial design to increase enrollment of under-represented older adults may not align with patient-reported preferences., (© 2024 The Authors. Journal of the American Geriatrics Society published by Wiley Periodicals LLC on behalf of The American Geriatrics Society.)

This study examines how conversations between patients and clinicians about the causes of their health conditions relate to patient engagement in care. Leveraging cultural health capital (CHC) theory, we find that patient-physician discussions of health attributions are one mechanism to build patient understanding and activate engagement. We present a qualitative interpretive analysis of data collected in three phases with adult home health care patients: phone interviews (n = 28), field observations (n = 61), and semi-structured field interviews (n = 38). We find that engaging in discussions of causal health attributions with clinicians enables patients to overcome uncertainty, envision preventive actions, and engage in setting future goals. Such discussions must be supported by acknowledgement of the co-responsibility of individual factors and structural factors such as social determinants of health. These discussions are not easy to navigate but they can potentially help patients transition from a mindset of treating the disease (pathogenic approach) to an awareness of their available capabilities to improve health (salutogenic approach). This study contributes to research on attribution theory and cultural health capital theory by demonstrating how discussing causes for poor health can enable patients resolve doubts and accrue instrumental and symbolic resources that facilitate healing., Competing Interests: Declaration of competing interest The authors declare no conflicts of interest in this study., (Copyright © 2024 Elsevier Ltd. All rights reserved.)

Despite racial disparities in breast cancer mortality, Black women remain underrepresented in clinical trials. In this mixed methods research, 48 Black women were engaged via focus group discussions and in-depth interviews to better understand the lived experience of women with breast cancer. The results of this qualitative study informed the development of a subsequent online survey to identify barriers, motivators, and other factors that influence decision-making by Black women diagnosed with breast cancer when considering clinical trial participation. Among the 257 Black survey participants, most (95%) were aware of clinical trials; of those, most viewed them as lifesaving (81%) and/or benefiting others (90%). Negative perceptions such as serious side effects (58%), not receiving real treatment (52%), or risk of potential harm (62%) were indicated. Barriers included financial expenses (49%), concerns that their condition could be made worse (29%), that they would receive a placebo (28%), or that treatment was unapproved (28%). Participants were more likely than their health care providers (HCPs) to initiate discussions of clinical trials (53% versus 33%), and 29% of participants indicated a need for more information about risks and benefits, even after having those conversations. The most trustworthy sources of information on clinical trials were HCPs (66%) and breast cancer support groups (64%). These results suggest that trusted communities are key for providing education on clinical trials. However, there is also a need for HCPs to proactively discuss clinical trials with patients to ensure that they are adequately informed about all aspects of participation., (© 2023. The Author(s).)