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. Drawing on a framework of trust, we observed that most participants, when discussing HCP-related barriers, raised concerns about HCPs' lack of technical competence, insufficient knowledge about endometriosis and inadequate medical training, followed by concerns about fidelity in which patients recounted experiences of their symptoms being trivialized or dismissed. Respondents also described a causal relationship between competence and fidelity, whereby a lack of competence was perceived to lead HCPs to be dismissive or neglectful. Respondents underscored how patient self-advocacy efforts and online patient communities helped them manage mistrust with HCPs. Although less frequently described, respondents also highlighted the value of HCPs as facilitators to care that similarly emphasized these two dimensions of trust and their inter-connectedness. We discuss the importance of HCPs in shaping patients' care experiences and, in particular, the value of trust for patients with endometriosis and likely other patient populations who seek legitimacy from the medical community but often feel unheard.

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. We show that participants perceived the sociophysical environment of telehealth to be both less institutional (e.g. more relaxed and less rushed) and more instrumental (e.g. more focused on the chief complaint), which shaped interactions with clinicians in ways that were experienced as paradoxically less personal (e.g. lacking social connection) and more person-centered (e.g. more attentive to the individual patient). We discuss theoretical and practical implications of these findings and what they mean for defining person-centered communication for adolescent care.

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 (n = 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. (2014) proposed four central goals of adolescent development: emotional security, engagement with learning, self-efficacy, and decision-making skills. This conceptual framework was used to outline the ways in which adolescent privacy during telehealth impacts adolescent development. Some adolescents reported that having their parents present during their telehealth visit afforded reassurance and comfort, and many parents explained that they served as a role-model during their adolescent's telehealth visit. However, other adolescents felt higher emotional security when they could establish an independent relationship with their HCP, with many describing how privacy during their telehealth visit enabled them to have more sensitive discussions with their HCP. Adolescents and parents also reported that telehealth allowed increased experiential learning for adolescents, given their proficiency with technology and ability to access their health care visits autonomously. Furthermore, the organization of privacy was complicated by a lack of understanding whose responsibility it was to facilitate alone time between the adolescent and HCP, as well as external factors such as location and quality of technology and the proximity of family members in the home. By ensuring opportunities for private healthcare encounters, both in telehealth and in-person visits, HCPs and parents can help support adolescents in achieving successful and healthy development.

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. Among the 11 of 21 discharged veterans who enrolled in the follow up study, reason for discharge, designated by the veteran's primary clinician at the time of discharge, predicted outcomes (p = 0.02) at 9 months, with "disengagement" as a reason for discharge predicting poorer outcomes. Six of 11 veterans experienced poor outcomes at 9 months, including incarceration and substance use relapse. ACT clinicians rarely discharge clients. Many clients may experience negative clinical events following ACT discharge, and clients may be difficult to follow post-discharge. Client disengagement from ACT may indicate higher likelihood of poor outcomes following discharge to less intensive clinical services.

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. Clients and clinicians highly valued client-centered priorities such as autonomy and empowerment when making decisions. However, two frequently discussed themes revealed complex beliefs about what that involvement should look like in practice: (a) the role of communication and information exchange and (b) the value and stability of clinician and client epistemic expertise. Complex beliefs regarding these two themes suggested a dynamic and reflexive approach to information management. Situating these findings within the Theory of Motivated Information Management, we discuss implications for conceptualizing SDM in mental health services and adapt Siminoff and Step's Communication Model of Shared Decision Making (CMSDM) to propose a Communication-centered Epistemic Model of Shared Decision Making (CEM-SDM).

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. Interviewees drew on the Belmont Report to describe 4 key principles of ethical community-engaged research (embodying ethical action, respecting participants, generalizing beneficence, and negotiating justice). However, novel aspects of the participant role were the source of most ethical challenges. We theorize that the shift in ethical focus from subject to participant will pose new ethical dilemmas for community-engaged investigators and for other constituents interested in increasing community involvement in health research.

"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. Clinicians support the concept of discharge but raise concerns about clients' future stability, clients' feelings about discharge, and other aspects of the discharge process. We propose strategies that can be used to support clinicians and clients in discharge decision-making.

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. Providers and administrators discussed barriers to implementing EBPs. Successful EBPs were described as incorporating flexibility and close supervision to maximize provider adherence. Providers expressed preferences for structured EBPs like FFT that have both explicit implementation steps and built-in flexibility.

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.S. cancer survivorship care delivery were invited to participate in a 4-round online Delphi panel to identify and evaluate priorities for defining and fostering primary care's engagement in breast cancer survivorship. Panelists were asked to identify and then assess (ratings of 1-9) the importance and feasibility of priority items to support primary care engagement in survivorship. Panelists were asked to review the group results and reevaluate the importance and feasibility of each item, aiming to reach consensus. RESULTS: Respondent panelists (n = 23, response rate 57.5%) identified 31 priority items to support survivorship care. Panelists consistently rated three items most important (scored 9) but with uncertain feasibility (scored 5-6). These items emphasized the need to foster connections and improve communication between primary care and oncology. Panelists reached consensus on four items evaluated as important and feasible: (1) educating patients on survivorship, (2) enabling screening reminders and monitoring alerts in the electronic medical record, (3) identifying patient resources for clinicians to recommend, and (4) distributing accessible reference guides of common breast cancer drugs. CONCLUSION: Role clarity and communication between oncology and primary care were rated as most important; however, uncertainty about feasibility remains. These findings indicate that cross-disciplinary capacity building to address feasibility issues may be needed to make the most important priority items actionable in primary care.

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. We conducted a comprehensive thematic literature review and summarized empirically grounded discussions of ethics in CBPR, with a focus on the value of the Belmont principles in CBPR, additional essential components of ethical CBPR, the ethical challenges CBPR practitioners face, and strategies to ensure that CBPR meets ethical standards. Our study provides a foundation for developing a working definition and a conceptual model of ethical CBPR.

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. METHODS: A critical review of the patient-doctor relationship (PDR) literature is presented, along with a review of relevant interactional studies that examine doctor-patient interactions from the perspective of conversation analysis (CA). This literature shows how patients respond to doctors' verbal and non-verbal behaviours in systematic ways that affect how they disclose and how they relate to doctors. RESULTS: Findings from the CA literature suggest that clinicians might consider several important interactional features to improve the PDR and perhaps also patient health outcomes: (i) the use of open-ended questions (e.g. 'What brought you in today?') and positive polarity items (e.g. 'Is there something else you wanted to talk about today?') elicits patient concerns and addresses unmet concerns more effectively than the use of closed questions and negative polarity items, respectively; (ii) eye gaze suggests availability and an attending recipient, and patients indicate that doctor attentiveness at crucial parts of their problem presentation is important, and (iii) verbal dysfluencies are one practice speakers employ to gain the attention of a non-attending recipient. Doctors may want to pay attention to patients' dysfluencies to better understand when their attention is valued. CONCLUSIONS: Constructing supportive relationships with patients often does not require a great investment of time, but it does require commitment to 'being there for patients'. This review suggests that when doctors attune to language and social practices during medical consultations, the relationships they develop with patients may substantially improve patients' health and be intrinsically rewarding for both doctors and patients.

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). Informed by depth interviews and a four round Delphi panel with diverse stakeholders from primary care and oncology, we will implement and evaluate an iterative clinical intervention in a hybrid type 1 effectiveness-implementation cluster randomized design in twenty-six primary care practices. Multi-component implementation strategies will include facilitation, audit and feedback, and learning collaboratives. Ongoing data collection and analysis will be performed to optimize adoption of the intervention. The primary clinical outcome to test effectiveness is comprehensive breast cancer follow-up care. Implementation will be assessed using mixed methods to explore how organizational and contextual variables affect adoption, implementation, and early sustainability for provision of follow-up care, symptom, and risk management activities at six- and 12-months post implementation. DISCUSSION: Study findings are poised to inform development of scalable, high impact intervention processes to enhance long-term follow-up care for patients with a history of breast cancer in primary care. If successful, next steps would include working with a national primary care practice-based research network to implement a national dissemination study. Actionable activities and processes identified could also be applied to development of organizational and care delivery interventions for follow-up care for other cancer sites. TRIAL REGISTRATION: Registered with ClinicalTrials.gov on June 2, 2022: NCT05400941.

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. We found that these changes in nursing work challenged nurses' professional roles, and the informants reported that the changes disrupted their relationships with patients and with one another. This implementation of patient centeredness resulted in a view of nursing that conflicted with many nurses' implicit and explicit understanding of their work. Our findings suggest that the adoption of some versions of patient centeredness might obscure substantial and substantive nursing work and might undermine nurses' concepts of caregiving.

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. Thematic analysis revealed conflict between the necessity of expectation formation and the unpredictability of transplant. Providers described a tension between adequately informing patients of potential risks of transplant and presenting so much information as to create unnecessary anxiety in patients. Patients described issues with outcome unpredictability (not knowing what particular complications they would experience) and temporal unpredictability (not knowing when complications would appear). Patients struggled to make sense of unexpected complications and resulting limitations post-BMT and plan for the future amid the nonlinear recovery timeline. The challenges of unpredictability warrant a support solution that enables patient sensemaking in their evolving illness journey and facilitates adaptation to new circumstances.

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. English-speaking parents and 13- to 17-year-old adolescents who completed a video visit at eight academic-affiliated pediatric primary care practices in the Southeastern U.S. were recruited between September 2020 and January 2021. Online surveys were administered and analyzed using descriptive and bivariable analysis. Subsequent semi-structured qualitative interviews were conducted and analyzed using thematic analysis. RESULTS: Forty-eight adolescents and 104 parents completed surveys. Fourteen adolescents and 20 parents were interviewed. Mean ages of adolescents and parents were 15 and 46 years, respectively, and most participants identified as female, non-Hispanic, and white. Seventy-seven percent of adolescents reported very private telehealth visits. Most privacy concerns were related to the location of the visit in the patient's home or family members overhearing. Adolescents reported that alone time with their provider increased comfort in discussing sensitive issues, although only 31% of adolescents reported having time alone with their provider during their telehealth visit. Neither adolescents nor parents reported concerns about confidentiality. Interviews suggested that adolescent autonomy and independence in accessing health care may explain the positive relationship observed between therapeutic alliance and privacy. CONCLUSIONS: Adolescents and parents describe telehealth as convenient, useful, private, and confidential. Providers should strive to maximize privacy and the therapeutic alliance during video visits, including encouraging alone time and supporting adolescent autonomy and independence.

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. This study takes a patient-oriented approach and aims to complement prior research on diagnostic error by examining patient-reported experiences with misdiagnosis. Methods Data were part of a larger online survey comprising nonrandomly sampled patients with self-reported surgically confirmed endometriosis (n = 758). We examined patients' reports of misdiagnosis, to which healthcare professionals (HCPs) they attributed misdiagnosis, mean diagnostic delay, and endometriosis symptoms and physical sites predicting misdiagnosis reports. Results Mean reported diagnostic delay was 8.6 years. 75.2% of patients reported being misdiagnosed with another physical health (95.1%) and/or mental health problem (49.5%) and most frequently by gynecologists (53.2%) followed by general practitioners (34.4%). Higher odds of reporting a physical or mental health misdiagnosis was associated with reports of virtually all symptoms and endometriosis on the bladder, small bowel, pelvic sidewall, and rectum. Higher odds of reporting a physical health misdiagnosis was exclusively associated with reports of endometriosis on the appendix. Higher odds of reporting a mental health misdiagnosis was exclusively associated with reports of a younger symptom onset age; endometriosis on the diaphragm, large bowel, lung, and ureter; and comorbid adenomyosis diagnosis. Conclusions Endometriosis continues to present serious and complex diagnostic challenges. These findings corroborate previous objective investigations documenting endometriosis diagnostic error, establish the first patient-reported incidence, and further demonstrate value in including patients in diagnostic error research.

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. Twelve patients diagnosed with Leukemia were recruited to evaluate the prototypes using a think-aloud interview protocol. RESULTS: The results showed a preference for vertical bar charts over horizontal and pie charts. In addition, we found that animating the charts to "fill-up" generally conveyed a subtle sense of positivity even when diagnosis information was negative. The value of explicitly indicating numeric values and scale varied but the results suggest that what matters to participants is having control over when such details would be seen. The results also point out that making sense of prognostic information involves balancing the tension between information utility and patient judgments about authenticity and credibility of prognosis information. CONCLUSION: Our findings are important for the design and implementation of representations of prognostic information. They suggest that an appropriate visual format can reduce potential negative effects in conveying prognosis information, as well as helping patients stay positive and motivated for cure in the delivery of prognosis information.

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. We argue that in developing and maintaining trust, partners must balance scientific rigor with community relevance and cultural appropriateness of research. They must strike a balance between working with the same limited pool of trusted partners, which can speed research but slow wider acceptance of science, and extending their trust to new partners, which can broaden acceptance of science but slow research. Practitioners may facilitate the development of trust in science by gradually expanding the pool of partners they choose their collaborators from.

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. Panelists agreed on a preferred solution for three of five vignettes. Panelists indicated that ethical research decision-making should be inclusive of diverse perspectives. Panelists prioritized scientific goals above participatory ones and viewed tenets of scientific validity as value-free. Panelists indicated that participatory research ethics would be difficult to codify, but that vignette-based learning could support didactic objectives.

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. To do so, we conducted 2 online, modified-Delphi panels with 63 expert stakeholders who iteratively rated and discussed 9 ethical principles commonly used in CEnR in terms of their importance and feasibility for use in translational research. The RAND/UCLA appropriateness method was used to analyze the data and determine agreement and disagreement among participating experts. Both panels agreed that ethical translational research should be "grounded in trust." Although the academic panel endorsed "culturally appropriate" and "forthcoming with community about study risks and benefits," the mixed academic-community panel endorsed "scientifically valid" and "ready to involve community in interpretation and dissemination" as important and feasible principles of ethical translational research. These findings suggest that in addition to protecting human subjects, contemporary translational science models need to account for the interests of, and owe ethical obligations to, members of the investigative team and the community at large.