Publications by authors named "Nora Jones"

Background: A feature of HIV cure trials is the need to interrupt treatment to test the efficacy of experimental interventions-a process known as analytical treatment interruptions (ATIs).

Objectives: We report the experiences of participants after they completed an extended ATI.

Methods: From April to November 2022, we conducted post-ATI in-depth interviews with BEAT2 clinical trial (NCT03588715) participants who stopped ART while receiving an immunotherapy regimen.

View Article and Find Full Text PDF

Introduction: Achieving effective community engagement has been an objective of U.S. National Institutes of Health-funded HIV research efforts, including participation of persons with HIV.

View Article and Find Full Text PDF

Health care providers are ethically obligated to provide effective management for patients suffering from chronic pain. Many patients have not had access to such management, and current bioethical principles are not sufficient to create the roadmap needed on how to improve current standard of care. Principles described in the emerging field of urban bioethics greatly enhance the toolbox available to providers regarding chronic pain management.

View Article and Find Full Text PDF

Analytical treatment interruption (ATI), defined as a closely monitored clinical pause in antiretroviral therapy (ART), is a core component of many HIV cure-directed clinical studies. ATIs may cause significant physical and psychosocial risks for people living with HIV and, as a result, integrating participant and community perspectives into clinical trial designs that include an ATI is crucial to ensuring a successful and person-centered trial. We conducted semi-structured interviews with participants enrolling in the BEAT-2 cure-directed trial (NCT03588715).

View Article and Find Full Text PDF

Tension between naming to render an important kind of suffering among transgender people more visible and avoiding pathologizing experiences of transgender people in a gender-binary world can be keenly felt among patients seeking gender-affirming services. This article suggests why clinical "verification" of a patient's need for gender-affirming care is likely less important than clinicians' expressions of empathy and respect for patients' autonomy. This article also suggests that fostering transgender patients' sense of agency should be prioritized.

View Article and Find Full Text PDF

Less than 3% of pediatric dermatologists identify as Black, meaning that the vast majority of Black dermatology patients in the United States are being treated by dermatologists who do not share personal hair management experience and cultural symbolism around tightly coiled hair. We cannot, and should not, wait for racial concordance so that Black physicians treat all Black patients. A powerful alternative solution is listening to and learning from others' experience relating to the importance of hair in molding one's identity and emerging autonomy.

View Article and Find Full Text PDF

Background: The pursuit of a cure for HIV is a high priority for researchers, funding agencies, governments and people living with HIV (PLWH). To date, over 250 biomedical studies worldwide are or have been related to discovering a safe, effective, and scalable HIV cure, most of which are early translational research and experimental medicine. As HIV cure research increases, it is critical to identify and address the ethical challenges posed by this research.

View Article and Find Full Text PDF

Providers from high-income countries are often drawn to practicing medicine in settings identified as having greater need, whether that be in a low- or middle-income country or within an underserved area within their own high-income country. Despite sharing the goal of fostering health equity, global health and urban health are often considered in dichotomous ways. This article points a lens at the intersection of these 2 fields, highlighting what they can learn from each other.

View Article and Find Full Text PDF

Background: Reports continue to show that Blacks with curable lung or breast cancer complete treatment less often than similar Whites contributing to worse survival. ACCURE is an intervention trial designed to address this problem.

Patients And Methods: A pragmatic, quality improvement trial comparing an intervention group to retrospective and concurrent controls.

View Article and Find Full Text PDF

Purpose: To describe how adolescent and young adult survivors and their mother-caregivers ascribe meaning to their post-brain tumor survivorship experience, with a focus on sense making and benefit findings and intersections with religious engagement.

Participants & Setting: Adolescent and young adult survivors of childhood brain tumors and their families, living in their community settings.

Methodologic Approach: Secondary analysis of simultaneous and separate individual, semistructured interviews of the 40 matched dyads (80 total interviews) occurred using conventional content analysis across and within dyads.

View Article and Find Full Text PDF

Background: Advances in early diagnosis and curative treatment have reduced high mortality rates associated with non-small cell lung cancer. However, racial disparity in survival persists partly because Black patients receive less curative treatment than White patients.

Methods: We performed a 5-year pragmatic, trial at five cancer centers using a system-based intervention.

View Article and Find Full Text PDF
Article Synopsis
  • Community-based participatory research (CBPR) fosters collaboration but can be tough to maintain, prompting the need for new strategies like the CBPR charrette model used by UNC in 2010 for health research engagement.
  • The CHAMPS study utilized the charrette process with 14 partners to identify strengths, needs, and challenges, while receiving guidance from experts in CBPR and health disparities.
  • The charrette improved trust, transparency, and accountability among the CHAMPS partners, enabling clearer communication and goal-setting, and highlighting the need for future comparisons of its effectiveness against other partnership-building methods.
View Article and Find Full Text PDF

What role, if any, physicians should have in the response to gun violence is a question not only of professionalism but also of law, culture, and ethics. We argue that physicians do have important roles to play in the larger landscape of advocacy, public opinion, and reduction of gun violence, but that it is not ethically or legally appropriate for them to serve as gatekeepers of gun privileges by assessing competency.

View Article and Find Full Text PDF

Purpose: Racial disparities in cancer treatment-related symptom burden are well documented and linked to worse treatment outcomes. Yet, little is known about racial differences in patients' treatment-related symptom management experiences. Such understanding can help identify modifiable drivers of symptom burden inequities.

View Article and Find Full Text PDF

It is well known that health disparities exist and that a significant majority of patients who suffer disproportionately from them are lower income, non-white residents of dense, and diverse urban neighborhoods. It is our belief that factors hindering the reduction of health disparities in these neighborhoods are a lack of a framework and preparation needed to engage these communities in identifying specific health care needs. This paper describes one curricular intervention, a graduate level community engagement course, developed within an academic medical center located in an urban setting, that demonstrates promise in effecting change in the extent to which clinicians are able to engage communities and practice "neighborhood-engaged care" with the central goal of mitigating disparities.

View Article and Find Full Text PDF

Purpose: Children diagnosed with brain tumors increasingly survive to adulthood, although they do so with needs often requiring continued parental caregiving. We sought to describe the nature of caregivers' expectations about survivors' function and how expectations connect to ongoing management and decision-making.

Methods: Forty-five qualitative interviews with mother-caregivers were conducted and coded for themes related to expectations for their adolescent/young adult children living post-childhood brain tumors.

View Article and Find Full Text PDF

The function of the majority of genes in the mouse and human genomes remains unknown. The mouse embryonic stem cell knockout resource provides a basis for the characterization of relationships between genes and phenotypes. The EUMODIC consortium developed and validated robust methodologies for the broad-based phenotyping of knockouts through a pipeline comprising 20 disease-oriented platforms.

View Article and Find Full Text PDF

Survivors of childhood brain tumors face many obstacles to living independently as adults. Causes for lack of independence are multifactorial and generally are investigated in terms of physical, cognitive, and psychosocial treatment-related sequelae. Little is known, however, about the role of expectation for survivors' function.

View Article and Find Full Text PDF