Evaluation of NCI-Designated Cancer Center and Comprehensive Cancer Center Survivorship-Focused Websites: Information Provided and Accessibility.

Background: Individuals with a history of cancer increasingly seek health information from online resources, including NCI-designated Cancer Center websites. Centers receive NCI designation because they provide excellent care and engage in cutting-edge research. However, the information presented on these webpages and their accessibility is unknown.

Recent Innovations in Primary Care Cancer Survivorship Roles.

Background: Despite 2 decades of cancer survivorship research, policy, and advocacy, primary care in the United States has not fully integrated survivorship care into its generalist role. This manuscript describes innovative roles primary care physicians have adopted in survivorship care and how these roles emerged.

Methods: We conducted qualitative in-depth interviews with a snowball sample of 10 US primary care physician innovators in survivorship care.

Identifying priority areas to support primary care engagement in breast cancer survivorship care: A Delphi study.

Introduction: Existing approaches in cancer survivorship care delivery have proven to be insufficient to engage primary care. This study aimed to identify stakeholder-informed priorities to improve primary care engagement in breast cancer survivorship care.

Methods: Experts in U.

Adapting and implementing breast cancer follow-up in primary care: protocol for a mixed methods hybrid type 1 effectiveness-implementation cluster randomized study.

Background: Advances in detection and treatment for breast cancer have led to an increase in the number of individuals managing significant late and long-term treatment effects. Primary care has a role in caring for patients with a history of cancer, yet there is little guidance on how to effectively implement survivorship care evidence into primary care delivery.

Methods: This protocol describes a multi-phase, mixed methods, stakeholder-driven research process that prioritizes actionable, evidence-based primary care improvements to enhance breast cancer survivorship care by integrating implementation and primary care transformation frameworks: the Exploration, Preparation, Implementation, and Sustainment (EPIS) framework and the Practice Change Model (PCM).

Exploring the Complexity of Telehealth Privacy Through a Lens of Adolescent Development.

Many challenges exist related to ensuring adolescent privacy with health care providers (HCPs), and the rapid integration of telehealth visits has created additional complexities in organizing privacy for adolescents. Through interviews with adolescent patients and their parents ( = 34), this qualitative analysis aimed to explore the complicated relationship and balance of adolescent alone time with HCPs, parental presence and support, and organization of privacy in order to consider how privacy during telehealth visits may contribute to adolescents' healthy development. A framework by Blum et al.

Exploring the Connectivity Paradox: How the Sociophysical Environment of Telehealth Shapes Adolescent Patients' and Parents' Perceptions of the Patient-Clinician Relationship.

Even before the widespread transition to telehealth as a result of COVID-19, there was a considerable amount of research exploring its value and impact. However, telehealth research with adolescent patients is somewhat limited, with most work focusing on access, feasibility, and acceptability but reporting far less frequently on relationship building and rapport. This study examines qualitative interviews with adolescent patients (n = 14) and parents (n = 20) from a larger convergent parallel mixed methods study to explore how they understand telehealth to have altered the sociophysical environment of primary care clinic encounters and whether they perceive these changes to influence adolescents' relationships with clinicians.

Patient and Provider Perspectives on the Impacts of Unpredictability for Patient Sensemaking: Implications for Intervention Design.

Patients facing situations with significant unpredictability are met with challenges to expectation formation and preparation. One such context with unpredictable clinical outcomes is bone marrow transplant (BMT) for patients with hematologic malignancies. To understand the experience of unpredictability and opportunities for intervention, semi-structured interviews with patients who had received BMT (n  =  7) and transplant providers (n  =  8) were conducted.

Healthcare Providers' Impact on the Care Experiences of Patients with Endometriosis: The Value of Trust.

Endometriosis is a chronic and often painful inflammatory disease affecting one in ten biological females. It has been characterized as enigmatic and the average diagnostic delay is nearly seven years, time which patients experience as tumultuous and uncertain. This paper presents responses to a final open comment question of a large-scale survey documenting patients' experiences with (mis)diagnosis and highlights how patients perceived healthcare providers (HCPs) as barriers and facilitators to care.

Adolescent and Parent Perceptions of Telehealth Visits: A Mixed-Methods Study.

Purpose: Telehealth presents unique benefits and challenges for adolescents and their parents. This study aimed to explore adolescent and parent perceptions of privacy, confidentiality, and therapeutic alliance during telehealth video visits.

Methods: This was a cross-sectional convergent parallel mixed-methods study.

Improving prognosis communication for patients facing complex medical treatment: A user-centered design approach.

Background: The understanding and processing of numerical prognostic information can be challenging for patients who suffer from disease and the stress of a diagnosis.

Objective: This paper investigates how patients diagnosed with Leukemia respond to different graph representations of prognosis information.

Methods: We conducted a user-centered design process, for which three experimental prototypes (vertical, horizontal, and pie charts) with and without animation were developed.

Patient perceptions of misdiagnosis of endometriosis: results from an online national survey.

Background Endometriosis is an estrogen-dependent disease affecting 10% of females in which endometrial-like tissue grows outside the uterus, resulting in pain, infertility, and physical and psychosocial dysfunction. Prior research documenting diagnostic error reports a 6.7-year mean diagnostic delay.

Trust and the Ethical Conduct of Community-Engaged Research.

Community-engaged research (CEnR), which emphasizes equal participation of academic and community partners in research, seeks to improve public trust in science. Unfortunately, there is a dearth of rigorous empirical research on trust as a core component of ethical conduct of CEnR. Drawing on data collected from a project on the ethics of CEnR, this commentary discusses benefits and risks of trust and uses the concept of embeddedness to explain how public trust in science may be increased.

Ethics and Science in the Participatory Era: A Vignette-Based Delphi Study.

Participatory researchers rely on relationship-based ethical considerations to address ethical challenges, but little is known about how these considerations shape day-to-day decision-making. We presented vignettes describing ethical dilemmas to health researchers with varying degrees of experience in participatory research in an online modified-Delphi panel. Panelists rated potential solutions to dilemmas and provided rationales for choosing solutions in text boxes and discussion boards.

Clinical Factors Associated with Successful Discharge from Assertive Community Treatment.

We sought to explore clinical factors associated with successful transition from Assertive Community Treatment to less intensive clinical services. Mixed-method observational follow up study of veterans discharged from three VA-affiliated ACT teams to less intensive clinical services. Of the 240 veterans in ACT, 9% (n = 21) were discharged during the study period.

On using ethical principles of community-engaged research in translational science.

The transfer of new discoveries into both clinical practice and the wider community calls for reliance on interdisciplinary translational teams that include researchers with different areas of expertise, representatives of health care systems and community organizations, and patients. Engaging new stakeholders in research, however, calls for a reconsideration or expansion of the meaning of ethics in translational research. We explored expert opinion on the applicability of ethical principles commonly practiced in community-engaged research (CEnR) to translational research.

Integrating Client and Clinician Perspectives on Psychotropic Medication Decisions: Developing a Communication-Centered Epistemic Model of Shared Decision Making for Mental Health Contexts.

Shared decision making (SDM) interventions aim to improve client autonomy, information sharing, and collaborative decision making, yet implementation of these interventions has been variably perceived. Using interviews and focus groups with clients and clinicians from mental health clinics, we explored experiences with and perceptions about decision support strategies aimed to promote SDM around psychotropic medication treatment. Using thematic analysis, we identified themes regarding beliefs about participant involvement, information management, and participants' broader understanding of their epistemic expertise.

From subject to participant: ethics and the evolving role of community in health research.

Belmont Report principles focus on the well-being of the research subject, yet community-engaged investigators often eschew the role of subject for that of participant. We conducted semistructured interviews with 29 community and academic investigators working on 10 community-engaged studies. Interviews elicited perspectives on ethical priorities and ethical challenges.

Flexibility and structure may enhance implementation of family-focused therapy in community mental health settings.

This study elicited provider and administrator preferences in implementing an evidence-based practice (EBP) for bipolar disorder or psychosis, family-focused therapy (FFT). Providers (n = 35) and administrators (n = 5) from three community mental health centers took part in FFT training and participated in pre- and post-training focus groups. Transcripts were examined using conventional content analysis.

"You might lose him through the cracks": clinicians' views on discharge from Assertive Community Treatment.

Assertive Community Treatment (ACT) teams are increasingly interested in improving access to ACT through discharge of improved clients to less intensive mental health care services. We report results from a process evaluation of three teams in the VA's ACT program, Mental Health Intensive Case Management (MHICM), that began to implement discharge. MHICM clinicians (n=15) describe significant barriers to discharge.

Ethical community-engaged research: a literature review.

Health research has relied on ethical principles, such as those of the Belmont Report, to protect the rights and well-being of research participants. Community-based participatory research (CBPR), however, must also consider the rights and well-being of communities. This requires additional ethical considerations that have been extensively discussed but not synthesized in the CBPR literature.

Medicinal relationships: caring conversation.

Context: Good social relationships are crucial to well-being and to health in particular. The perception of having supportive social relationships has effects on reducing morbidity and mortality comparable with those of a good diet, regular exercise and cessation of moderate smoking. This suggests that supportive, trusting relationships with doctors could have a substantial direct biomedical effect on patients' health.

Patient centered, nurse averse? Nurses' care experiences in a 21st-century hospital.

Implementations of patient centeredness can vary tremendously across settings, yet we know little about how clinicians experience local interpretations of patient centeredness. In this article, we investigate nurses' experiences in a hospital designed to be patient centered in its emphasis on patient amenities and customer service. This environment altered nurses' articulation work by shifting the visibility of a number of nursing tasks; customer service tasks became more visible whereas many medical and caring tasks were obscured.

A video ethnography approach to assessing the ecological validity of neurocognitive and functional measures in severe mental illness: results from a feasibility study.

Background: The ecological validity of neurocognitive and functional measures in severe mental illness is poorly understood because of a lack of validated research methods to study community life-as-lived. We describe the development of a video ethnography method that measures naturalistic behaviors with codes called community performance indicators (CPIs). The method could provide a strategy to test the ecological validity of neurocognitive and functional assessments.