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.

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.

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.

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.