A hybrid method of healthcare delivery research and human-centered design to develop technology-enabled support for caregivers of hematopoietic stem cell transplant recipients.

Health information technology (HIT) is a widely recognized strategy to encourage cancer patients and caregivers to participate in healthcare delivery in a sustainable and cost-effective way. In the context of autologous hematopoietic cell transplant (HSCT), HIT-enabled tools have the potential to effectively engage, educate, support, and optimize outcomes of patients and caregivers in the outpatient setting. This study sought to leverage human-centered design to develop a high-fidelity prototype of a HIT-enabled psychoeducational tool for HSCT caregivers. Phase 1 focuses on breadth and depth of information gathering through a systematic review and semi-structured interviews to determine optimal tool use. Phase 2 engages in human-centered design synthesis and visualization methods to identify key opportunities for the HIT design. Phase 3 employs human-centered design evaluation, engaging caregivers to respond to low-fidelity concepts and scenarios to help co-design an optimal tool for HSCT. This study outlines a hybrid method of healthcare delivery research and human-centered design to develop technology-enabled support for HSCT caregivers. Herein, we present a design methodology for developing a prototype of HIT-enabled psychoeducational tool which can be leveraged to develop future eHealth innovations to optimize HSCT.

Integrating community-based health promotion programs and primary care: a mixed methods analysis of feasibility.

BACKGROUND: Implementation of evidence-based programs (EBPs) for disease self-management and prevention is a policy priority. It is challenging to implement EBPs offered in community settings and to integrate them with healthcare. We sought to understand, categorize, and richly describe key challenges and opportunities related to integrating EBPs into routine primary care practice in the United States. METHODS: As part of a parent, participatory action research project, we conducted a mixed methods evaluation guided by the PRECEDE implementation planning model in an 11-county region of Southeast Minnesota. Our community-partnered research team interviewed and surveyed 15 and 190 primary care clinicians and 15 and 88 non-clinician stakeholders, respectively. We coded interviews according to pre-defined PRECEDE factors and by participant type and searched for emerging themes. We then categorized survey items-before looking at participant responses-according to their ability to generate further evidence supporting the PRECEDE factors and emerging themes. We statistically summarized data within and across responder groups. When consistent, we merged these with qualitative insight. RESULTS: The themes we found, "Two Systems, Two Worlds," "Not My Job," and "Seeing is Believing," highlighted the disparate nature of prescribed activities that different stakeholders do to contribute to health. For instance, primary care clinicians felt pressured to focus on activities of diagnosis and treatment and did not imagine ways in which EBPs could contribute to either. Quantitative analyses supported aspects of all three themes, highlighting clinicians' limited trust in community-placed activities, and the need for tailored education and system and policy-level changes to support their integration with primary care. CONCLUSIONS: Primary care and community-based programs exist in disconnected worlds. Without urgent and intentional efforts to bridge well-care and sick-care, interventions that support people's efforts to be and stay well in their communities will remain outside of-if not at odds with-healthcare.

The use of projected autonomy in antenatal shared decision-making for periviable neonates: a qualitative study.

BACKGROUND: In this study, we assessed the communication strategies used by neonatologists in antenatal consultations which may influence decision-making when determining whether to provide resuscitation or comfort measures only in the care of periviable neonates. METHODS: This study employed a qualitative study design using inductive thematic discourse analysis of 'naturally occurring data' in the form of antenatal conversations around resuscitation decisions at the grey zone of viability. The study occurred between February 2017 and June 2018 on a labor and delivery unit within a large Midwestern tertiary care hospital. Participants included 25 mothers who were admitted to the study hospital with anticipated delivery in the grey zone of viability and practicing neonatologists or neonatology fellows who partnered in antenatal consultation. We used a two-stage inductive analytic process to focus on how neonatologists' discourses constructed SDM in antenatal consultations. First, we used a thematic discourse analysis to interpret the recurring patterns of meaning within the transcribed antenatal consultations, and second, we theorized the subsequent effects of these discourses on shaping the context of SDM in antenatal encounters. RESULTS: In this qualitative study, that included discourse analysis of real-time audio conversations in 25 antenatal consults, neonatologists used language that creates projected autonomy through (i) descriptions of fetal physiology (ii) development of the fetus's presence, and (iii) fetal role in decision-making. CONCLUSION: Discourse analysis of real-time audio conversations in antenatal consultations was revelatory of how various discursive patterns brought the fetus into decision-making, thus changing who is considered the key actor in SDM.

Provider perspectives on integrating family caregivers into patient care encounters.

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.

Education for patients with limb loss or absence: Aging, overuse concerns, and patient treatment knowledge gaps.

The goals of vascular composite allotransplantation (VCA) for hand are to maximize functional status and psychosocial wellbeing and to improve quality of life. Candidates are carefully vetted by transplant programs through an extensive evaluation process to exclude those patients with contraindications and to select those that are most likely to attain functional or quality of life benefit from transplant. Patient choice for any treatment, however, requires that candidates be able to understand the risks, benefits, and alternatives before choosing to proceed. This study aimed to understand patients' knowledge and perceptions about treatment options for hand loss, including hand transplant. This study will be used to inform a standardized education approach and develop conversation aids for use by clinicians and patients throughout the treatment decision process. Ten individuals who had experienced hand amputation or had congenital limb loss were interviewed to better understand previous and current decisions about treatment, experiences in adjusting to their treatment, and perceptions about hand VCA. From this qualitative interview data, four findings emerged: (1) knowledge and education around VCA as a treatment option; (2) adaptation of individuals with limb loss; (3) fear of risk associated with transplantation; (4) issues of aging and overuse injuries to existing limbs. Results suggests that there is opportunity for expanding education about all treatment options for patients with new loss, long-term loss, and congenital limb loss. Establishing a baseline of knowledge about all options-prosthetics, rehabilitative strategies, and VCA-can help patients evaluate their values and goals of treatment. Issues associated with aging, including overuse and injury, and adaptability over the life course should be included in considerations about treatment choices. Data indicate the need for routinely assessing patient preferences about treatment choice so patients can plan for their future as they adapt and age and as technology for treatments change. To assure that thorough information is provided for current and future decision-making, education about treatment choices and selection procedures for VCA should be standardized.

Provider Perspectives on Artificial Intelligence-Guided Screening for Low Ejection Fraction in Primary Care: Qualitative Study.

BACKGROUND: The promise of artificial intelligence (AI) to transform health care is threatened by a tangle of challenges that emerge as new AI tools are introduced into clinical practice. AI tools with high accuracy, especially those that detect asymptomatic cases, may be hindered by barriers to adoption. Understanding provider needs and concerns is critical to inform implementation strategies that improve provider buy-in and adoption of AI tools in medicine. OBJECTIVE: This study aimed to describe provider perspectives on the adoption of an AI-enabled screening tool in primary care to inform effective integration and sustained use. METHODS: A qualitative study was conducted between December 2019 and February 2020 as part of a pragmatic randomized controlled trial at a large academic medical center in the United States. In all, 29 primary care providers were purposively sampled using a positive deviance approach for participation in semistructured focus groups after their use of the AI tool in the randomized controlled trial was complete. Focus group data were analyzed using a grounded theory approach; iterative analysis was conducted to identify codes and themes, which were synthesized into findings. RESULTS: Our findings revealed that providers understood the purpose and functionality of the AI tool and saw potential value for more accurate and faster diagnoses. However, successful adoption into routine patient care requires the smooth integration of the tool with clinical decision-making and existing workflow to address provider needs and preferences during implementation. To fulfill the AI tool's promise of clinical value, providers identified areas for improvement including integration with clinical decision-making, cost-effectiveness and resource allocation, provider training, workflow integration, care pathway coordination, and provider-patient communication. CONCLUSIONS: The implementation of AI-enabled tools in medicine can benefit from sensitivity to the nuanced context of care and provider needs to enable the useful adoption of AI tools at the point of care. TRIAL REGISTRATION: ClinicalTrials.gov NCT04000087; https://clinicaltrials.gov/ct2/show/NCT04000087.

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.

Clinician perspectives on inpatient cystatin C utilization: A qualitative case study at Mayo Clinic.

INTRODUCTION: Serum creatinine (SCr) testing has been the mainstay of kidney function assessment for decades despite known limitations. Cystatin C (CysC) is an alternative biomarker that is generally less affected than SCr by pertinent non-renal factors in hospitalized patients, such as muscle mass. Despite its potential advantages, the adoption of CysC for inpatient care is not widespread. At one hospital with CysC testing, we demonstrated a significant rise in non-protocolized use over the last decade. This study uses qualitative methods to provide the first report of how clinicians understand, approach, and apply CysC testing in inpatient care. METHODS: Fifteen clinicians from various disciplines were interviewed about their experience with inpatient CysC testing. The semi-structured interviews were audio-recorded, transcribed verbatim, and analyzed thematically using a phenomenological approach. RESULTS: Knowledge and confidence with CysC varied greatly. Clinicians reported first learning about the test from colleagues on consulting services or multidisciplinary teams. The majority believed CysC to provide a more accurate measure of kidney function than SCr. Common scenarios for CysC ordering included medication dosing, evaluation of acute kidney injury, and a thorough evaluation of kidney function in patients with risk factors for an altered SCr. Facilitators for ordering CysC included the availability of rapid results turnaround and the automated calculation of glomerular filtration rate based on the biomarker. Barriers to use included a lack of education about CysC, and the absence of an institutional protocol for use. DISCUSSION: Clinicians at our site decided independent of institutional guidance whether and when CysC added value to patient care. While the majority of study participants indicated advantages to rapid turnaround CysC testing, its use depended not just on the features of the specific case but on clinician familiarity and personal preference. Findings from this research can guide the implementation and expansion of CysC testing.

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.

Promoting cardiovascular health and wellness among African-Americans: Community participatory approach to design an innovative mobile-health intervention.

BACKGROUND: Despite improvements in mortality rates over the past several decades, cardiovascular (CV) disease remains the leading cause of death for African-Americans (AAs). Innovative approaches through mobile health (mHealth) interventions have the potential to support lifestyle change for CV disease prevention among AAs. We aimed to translate a behavioral theory-informed, evidence-based, face-to-face health education program into an mHealth lifestyle intervention for AAs. We describe the design and development of a culturally relevant, CV health and wellness digital application (app) and pilot testing using a community-based participatory research (CBPR) approach with AA churches. METHODS: This mixed methods study used a 4-phase iterative development process for intervention design with the AA community. Phase 1 included focus groups with AA community members and church partners (n = 23) to gain insight regarding potential app end user preferences. In Phase 2, the interdisciplinary research team synthesized Phase 1 input for preliminary app design and content development. Phase 3 consisted of a sequential 3-meeting series with church partners (n = 13) for iterative app prototyping (assessment, cultural tailoring, final review). Phase 4, a single group pilot study among AA church congregants (n = 50), assessed app acceptability, usability, and satisfaction. RESULTS: Phase 1 focus groups indicated general and health-related apps preferences: multifunctional, high-quality graphics/visuals, evidence-based, yet simple health information and social networking capability. Phase 2 integrated these preferences into the preliminary app prototype. Phase 3 feedback was used to refine the app prototype for pilot testing. Phase 4 pilot testing indicated high app acceptability, usability, and satisfaction. CONCLUSIONS: This study illustrates integration of formative and CBPR approaches to design a culturally relevant, mHealth lifestyle intervention to address CV health disparities among AAs. Given the positive app perceptions, our study supports the use of an iterative development process by others interested in implementing an mHealth lifestyle intervention for racial/ethnic minority communities. TRIAL REGISTRATION: Clinicaltrials.gov NCT03084822.

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.

Bad news and first impressions: patient and family caregiver accounts of learning the cancer diagnosis.

Studies in medical journals regarding the delivery of a cancer diagnosis typically focus on a single clinic episode where the definitive news is disclosed to the patient by the physician. Far less research characterizes the diagnosis in the way patients and their family members often describe it: as a longitudinal, multi-sited search process culminating in a news-telling and realization event. This article analyzes lay accounts of learning a cancer diagnosis drawing on ethnographic interviews among a purposive sample of 28 patients recently diagnosed with leukemia, myeloma, or lymphoma and 30 of their family caregivers. The participants, recruited at a large cancer center in the United States, were asked to describe "the day" they learned the diagnosis. Narrative analysis revealed that in almost every case, detailed descriptions of preliminary events - such as the pace and sequence of testing; smooth or disorganized transitions between care providers; and the timeliness or delays in diagnosis - were used to contextualize the actual episode of hearing the diagnosis and reacting to the news. This study finds that patients' and caregivers' experience of the medical system prior to hearing the news played an important role in the way the news was ultimately internalized. The findings also provide empirical support for integrating lay perspectives on the diagnostic experience into future cancer disclosure guidelines.