Effective communication, where all parties share a common understanding, is necessary to realize the promise of Genomic Medicine. It is especially salient given the imperative to increase the participation of diverse populations in genomics research and to expand the reach of clinical genomics. We have previously shown that cancer genetic counseling is suboptimal for patients with limited health literacy. To address this finding, we implemented a pilot study to improve verbal communication between genetic counselors and their patients of limited health literacy that consisted of: i) curriculum development and delivery of a Genetic Counselors (GC) communication workshop; ii) two-month post-workshop interviews with GC participants (n = 9); iii) observations/audio recordings of counseling sessions involving 24 patients and two GC workshop participants; iv) post-counseling interviews with patients (n = 9). The 4.5-h workshop presented evidenced-based principles and strategies for effective communication with limited health literacy patients (e.g. use of plain language and teach-back), and offered specific techniques and exercises to practice adoption of such practices in the genetic counseling context. GCs expressed appreciation for the opportunity to refine their skills; however, they reported that some strategies were challenging given their professional training and communication habits. For example, GCs were concerned that use of plain language could undermine efforts to obtain informed consent and provide scientifically accurate information. Observations and patient interviews after the workshop revealed that GCs were able to employ the communication strategies
Increasing “patient engagement” has become a priority for health care organizations and policy-makers seeking to reduce cost and improve the quality of care. While concepts of patient engagement have proliferated rapidly across health care settings, little is known about how health care providers make use of these concepts in clinical practice. This paper uses 20 months of ethnographic and interview research carried out from 2015 to 2016 to explore how health care providers working at two public, urban, safety-net hospitals in the United States define, discuss, and assess patient engagement. We investigate how health care providers describe engagement for high cost patients—the “super-utilizers” of the health care system—who often face complex challenges related to socioeconomic marginalization including poverty, housing insecurity, exposure to violence and trauma, cognitive and mental health issues, and substance use. The health care providers in our study faced institutional pressure to assess patient engagement and to direct care towards engaged patients. However, providers considered such assessments to be highly challenging and oftentimes inaccurate, particularly because they understood low patient engagement to be the result of difficult socioeconomic conditions. Providers tried to navigate the demand to assess patient engagement in care by looking for explicit positive and negative indicators of engagement, while also being sensitive to more subtle and intuitive signs of engagement for marginalized patients.
Since the 1992 American Academy of Pediatrics (AAP) recommendation to put babies to sleep in the nonprone position and the subsequent 1994 "Back to Sleep" campaign, the U.S. rate of sudden infant death syndrome (SIDS) has decreased more than 40%. This study reports sleep position practices in the greater Philadelphia area during 1996 and 1997. Four hundred and ten parents of infants 6 months of age or less answered a questionnaire by interview in Philadelphia clinics and private pediatric offices from December 1995 through February 1997. Sleep position practices and other SIDS risk factors were measured among demographic groups and compared with reported rates in a similar population from 1993 and 1994. Data were analyzed by Chi square after analysis of correlation coefficients. Significance is reported at p < 0.05. Seventy-two percent of all infants surveyed slept nonprone (NP) compared to 31.8% in 1993 and 59.1% in 1994. The population was 61% African-American (AA), 62% clinic patients. The breast feeding rate was 31%, maternal smoking 17%, and cosleeping 46%. AA infants (67% vs. 82%), infants receiving care at a clinic (66% vs. 84%), and infants > 3 months old (65% vs. 76%) are less likely to be placed nonprone. Most parents who place infants on their back report it was recommended by a medical professional (56%). The majority of those placing infants prone do so because their infant is more comfortable or sleeps better (65%), although 73% said their physician/nurse discussed sleep position with them. Nonprone sleeping continues to increase since the initiation of the "Back to Sleep" campaign. Disparity between some demographic groups persists. An excessive number of African-American families and clinic families still choose a prone sleep position. Many who do so cite increased infant comfort, despite knowledge of the AAP recommendation.
The subjective nature of pain has always rendered it a point of entry for power and corresponding stratifying processes within biomedicine. The opioid crisis has further exacerbated these challenges by increasing the stakes of prescribing decisions for providers, which in turn has resulted in greater treatment disparities. Using the theoretical frame of cultural health capital (CHC) to account for these disparities in pain management as they unfold at both the macro- and the microlevel, we present findings from an interdisciplinary study of two complex care management programs in urban safety-net hospitals that serve high-utilizing patients. CHC, which considers the ways in which patient-provider interactions reflect and often reinforce broader social inequities, allows for a consideration of power as it circulates through and beyond the patient-provider encounter. Within the current sociopolitical era of pain management, attention must be paid to the stratifying processes that structure how suffering is addressed.
In this paper, we delineate how staff of two complex care management (CCM) programs in urban safety net hospitals in the United States understand trauma. We seek to (1) describe how staff in CCM programs talk about trauma in their patients’ lives; (2) discuss how trauma concepts allow staff to understand patients’ symptoms, health-related behaviors, and responses to care as results of structural conditions; and (3) delineate the mismatch between long-term needs of patients with histories of trauma and the short-term interventions that CCM programs provide. Observation and interview data gathered between February 2015 and August 2016 indicate that CCM providers define trauma expansively to include individual experiences of violence such as childhood abuse and neglect or recent assault, traumatization in the course of accessing health care and structural violence. Though CCM staff implement elements of trauma-informed care, the short-term design of CCM programs puts pressure on the staff to titrate their efforts, moving patients towards graduation or discharge. Trauma concepts enable clinicians to name structural violence in clinically legitimate language. As such, trauma-informed care and structural competency approaches can complement each other.
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