ABSTRACTBackgroundAs a component of goal‐oriented care, goal‐setting is an important strategy to improve self‐management and reduce the economic and personal burden of chronic illness. Primary care nurses, as integral members of the healthcare team, play a pivotal role in providing self‐management support to patients with multiple chronic illnesses. Yet, little is known about their perspectives on partnering with patients to set meaningful goals within self‐management support programmes.AimTo explore perspectives of primary care nurses about their practice of goal‐setting with patients to improve self‐management.MethodsFor this qualitative exploratory study, we conducted semi‐structured interviews with 28 primary care nurses who provided self‐management support to patients with multiple chronic illnesses. Data were analysed using inductive thematic analysis. This research was approved by the Mayo Clinic Institutional Review Board.ResultsKey themes from interviews focused on: (1) goal‐setting practices; (2) challenges encountered in goal‐setting; and (3) the perceived value‐add of using a patient‐centred goal‐setting approach. Nurses described practices that empower patients to take charge of goal‐setting, emphasising that the opportunity to create personal goals enhances motivation and enables the development of realistic action plans. Key challenges faced were patients' lack of familiarity with personal goal‐setting, competing life stressors and patients' reluctance to change.ConclusionOur findings contribute valuable insights about how primary care nurses approach goal‐setting within a self‐management support program. Notably, unlike previous studies where clinicians reported that time‐limited appointments and institutional expectations hindered patient‐centred goal‐setting, our participants practicing in an institutionally supported goal‐oriented patient‐centred model of care did not report time constraints or pressures to prioritise clinical goals over patient goals. Instead, they described patient‐centred goal‐setting practices that are associated with positive patient and clinical outcomes. To potentially corroborate and expand upon our findings and inform practice and training, future research should include qualitative and survey studies to explore primary care RNs perspectives about goal‐setting and observational research to evaluate nurse–patient goal‐setting interactions.
Bridging clinical informatics and implementation science to improve cancer symptom management in ambulatory oncology practices: experiences from the IMPACT consortium
AbstractObjectivesTo report lessons from integrating the methods and perspectives of clinical informatics (CI) and implementation science (IS) in the context of Improving the Management of symPtoms during and following Cancer Treatment (IMPACT) Consortium pragmatic trials.Materials and MethodsIMPACT informaticists, trialists, and implementation scientists met to identify challenges and solutions by examining robust case examples from 3 Research Centers that are deploying systematic symptom assessment and management interventions via electronic health records (EHRs). Investigators discussed data collection and CI challenges, implementation strategies, and lessons learned.ResultsCI implementation strategies and EHRs systems were utilized to collect and act upon symptoms and impairments in functioning via electronic patient-reported outcomes (ePRO) captured in ambulatory oncology settings. Limited EHR functionality and data collection capabilities constrained the ability to address IS questions. Collecting ePRO data required significant planning and organizational champions adept at navigating ambiguity.DiscussionBringing together CI and IS perspectives offers critical opportunities for monitoring and managing cancer symptoms via ePROs. Discussions between CI and IS researchers identified and addressed gaps between applied informatics implementation and theory-based IS trial and evaluation methods. The use of common terminology may foster shared mental models between CI and IS communities to enhance EHR design to more effectively facilitate ePRO implementation and clinical responses.ConclusionImplementation of ePROs in ambulatory oncology clinics benefits from common understanding of the concepts, lexicon, and incentives between CI implementers and IS researchers to facilitate and measure the results of implementation efforts.
Systematic symptom management in the IMPACT Consortium: rationale and design for 3 effectiveness-implementation trials
AbstractCancer and its treatment produce deleterious symptoms across the phases of care. Poorly controlled symptoms negatively affect quality of life and result in increased health-care needs and hospitalization. The Improving the Management of symPtoms during And following Cancer Treatment (IMPACT) Consortium was created to develop 3 large-scale, systematic symptom management systems, deployed through electronic health record platforms, and to test them in pragmatic, randomized, hybrid effectiveness and implementation trials. Here, we describe the IMPACT Consortium’s conceptual framework, its organizational components, and plans for evaluation. The study designs and lessons learned are highlighted in the context of disruptions related to the COVID-19 pandemic.
Examining Prenatal Decision-Making at the Limits of Viability: A Qualitative Study of Neonatologists’ Periviable Consultation
Abstract Objective To examine and compare health care provider perceptions for integrating family caregivers into patient encounters and other processes of care by medical specialty. Data Sources/Setting Data were from 19 interviews conducted in 2018, 10 with primary care or palliative care providers and nine with proceduralists or interventionists in practices located in Minnesota, Florida, and Arizona. Study Design This was a qualitative study using data collected from one‐on‐one, semi‐structured interviews with physicians. Data Collection By using purposeful “maximum variation” sampling to capture differences between primary and palliative care providers and proceduralists/interventionists, data were collected, reviewed, coded, and then analyzed using inductive content analysis with a constant comparison approach. Primary Findings Primary care providers described a lack of organizational and institutional resources to support caregivers. Accordingly, they were compelled to curb caregiver engagement in order to meet patients' clinical care needs within the time and workflow demands in encounters. Proceduralists and interventionists described the need to assess caregivers for suitability to provide care during intense periods of treatment. They reported having access to more formal organizational resources for supporting caregivers. Overall, providers described a paradox, where caregivers are seen as contributing value to patient encounters until they need training, education, or support to provide care, at which point they become burdensome and require more time and resources than are typically available. Conclusions Results highlight how organizational constraints inhibit caregiver engagement in patient encounters and influence provider attitudes about engaging caregivers and assessing their unmet needs. Findings also provide insights into challenges across practice types for implementing state and federal laws that promote caregiver engagement.
Uncertainty at the Limits of Viability: A Qualitative Study of Antenatal Consultations
BACKGROUND AND OBJECTIVES: Antenatal consultation between a neonatologist and expectant parent(s) may determine if resuscitation is provided for or withheld from neonates born in the gray zone of viability. In this study, we sought to gain a deeper understanding of uncertainties present and neonatologists’ communication strategies regarding such uncertainties in this shared decision-making. METHODS: A prospective, qualitative study using transcriptions of audio-recorded antenatal consultations between a neonatologist and expectant parent(s) was conducted. Pregnant women were eligible if anticipating delivery in the gray zone of viability (22 0/7–24 6/7 weeks’ gestation). Over 18 months, 25 of 28 pregnant women approached consented to participate. Applied thematic analysis was used to inductively derive and examine conceptual themes. RESULTS: Inductive analysis of consult transcripts revealed uncertainty as a central theme. Several subthemes relating to uncertainty were also derived, including the timing of delivery, NICU course, individual characteristics (of physician, expectant parent(s), and fetus or neonate), and consequences of the decision for the expectant parent(s). Analysis revealed that uncertainty was actively managed by neonatologists through a variety of strategies, including providing more information, acknowledging the limits of medicine, acknowledging and accepting uncertainty, holding hope, and relationship building. CONCLUSIONS: Uncertainty is pervasive within the antenatal consultation for periviable neonates and likely plays a significant role in decision-making toward postnatal resuscitative efforts. Uncertainty complicated, or even paralyzed, decision-making efforts while also providing reassurance toward a positive outcome. Directions for future study should consider whether advanced communication training modulates the impact that uncertainty plays in the shared decision-making encounter.
HEALTH CARE PROVIDER ATTITUDES ABOUT INTEGRATING FAMILY CAREGIVERS INTO CLINICAL ENCOUNTERS
Abstract The presence of family caregivers in clinical encounters is becoming more common with the aging of the US population and the continued shift of care responsibilities from health professionals in clinical settings to family caregivers at home. Patients accompanied to clinical encounters by caregivers are more likely to be older, sicker, and have lower health literacy. Research shows, however, that providers often do not initiate any caregiver participation and when they do, conversations center on relaying technical medical information rather than preferences and capacity to provide caregiving assistance. Little is known about provider perceptions of engaging caregivers in clinical encounters. Using data from 20 semi-structured interviews with physicians from primary and specialty care, we identified 3 inter-related themes about engaging caregivers in clinical encounters: 1) ambivalence about caregivers’ role in clinical encounters; 2) trepidation about posing questions directly to caregivers; and, 3) beliefs that systemic barriers exist that inhibit integration of caregivers. Providers, especially in primary care encounters, chiefly view caregivers as sources of supplemental information or for absorbing or reinforcing clinical instructions for care at home. Providers also voiced concerns about the ethics of assessing caregiver capacity to provide assistance to the patient without having clinical authority to treat or adequate resources to provide to caregivers. Finally, providers identified structural barriers, including time constraints, for integrating caregivers into the clinical care team. Findings provide insight into provider attitudes on the caregivers’ role, a perspective that is essential for understanding opportunities and challenges for implementing caregiver interventions in clinical settings.
The Supervisor’s Perceived Role in Employee Well-Being: Results From Mayo Clinic
Purpose: Novel approaches are needed to enhance employee well-being and perhaps supervisors can be an effective agent for worksite health promotion. The aim of this study was to examine the supervisor’s perceived needs, barriers, and role for influencing employee well-being for incorporation into program development. Design: Semistructured, qualitative interviews of supervisors. Setting: Large, integrated academic health-care organization with over 30 000 employees and 2600 supervisors having access to comprehensive well-being programs and a successful well-being champion network comprised of 600 champions. Participants: Twenty supervisors representing clinical, research, and administrative units. Methods: Semistructured, one-on-one interviews were conducted and audio recorded. Analysis included content log development and open coding by a trained analyst to reveal key themes. More formalized content coding using specialized software for qualitative analyses was also conducted. Results: Supervisor responses were wide ranging regarding their perceived and desired role in promoting workplace well-being. Barriers from the supervisor perspective included high current workload, ambivalence about promoting wellness, lack of support from leadership, lack of flexibility and control at work, and difficulty accessing on-site resources. They perceived their potential role in well-being as remaining a positive role model and encouraging their staff in wellness activities. Conclusion: Although findings are generated from a small sample size, these qualitative data provide compelling and early insights into building a workplace well-being strategy leveraging an underutilized key stakeholder, the workplace supervisor.
Patient-perceived acceptability of a virtual world-based cardiac rehabilitation program
Background Despite its benefits, cardiac rehabilitation (CR) participation rates remain subpar. Telehealth lifestyle interventions have emerged as modalities to enhance CR accessibility. Virtual-world (VW) technology may provide a means to increase CR use. Objectives This pilot study assessed the feasibility and acceptability of a VW-based CR program as an extension to medical center-based CR. Our goal is to apply the study results toward the design of a patient-centered VW platform prototype with high usability, understandability, and credibility. Methods Patients ( n = 8, 25% women) recently enrolled in outpatient CR at Mayo Clinic, Rochester, Minnesota participated in a 12-week, VW health education program and provided feedback on the usability, design and satisfaction of the intervention at baseline and completion. A mixed-methods approach was used to analyze the participant perceptions of the intervention. Results Overall, there were positive participant perceptions of the VW experience. There was unanimous high satisfaction with the graphical interface appearance and ease of use. Participants placed value on the convenience, accessibility, and social connectivity of the remote program as well as the novelty of the simulation platform presentations, which aided in memorability of key concepts. Greater than 80% of participants reported that the program improved their health knowledge and helped to maintain better health habits. Conclusions Our pilot study revealed the feasibility and acceptability of an innovative VW-based CR program among cardiac patients. This novel delivery method for CR has the potential to influence healthy lifestyle change and to increase accessibility to vulnerable populations with higher cardiovascular disease burdens.