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Open Access Publications from the University of California

Recent Work

The Department of Humanities and Social Sciences at UCSF provides non-biomedical social science and humanities perspectives on health, illness, and disease. The Department, which is comprised of a History of Health Sciences division and a Medical Anthropology division, is also home to the Center for Humanities and Health Sciences which aims to foster intellectual interaction among the UC health science communities and humanities.

Accounting for the interplay of interpersonal and structural trauma in the treatment of chronic non-cancer pain, opioid use disorder, and mental health in urban safety-net primary care clinics

(2023)

While the epidemiological literature recognizes associations between chronic non-cancer pain (CNCP), opioid use disorder (OUD), and interpersonal trauma stemming from physical, emotional, sexual abuse or neglect, the complex etiologies and interplay between interpersonal and structural traumas in CNCP populations are under-examined. Research has documented the relationship between experiencing multiple adverse childhood experiences (ACEs) and the likelihood of developing an OUD as an adult. However, the ACEs framework is criticized for failing to name the social and structural contexts that shape ACE vulnerabilities in families. Social scientific theory and ethnographic methods offer useful approaches to explore how interpersonally- and structurally-produced traumas inform the experiences of co-occurring CNCP, substance use, and mental health. We report findings from a qualitative and ethnographic longitudinal cohort study of patients with CNCP (n = 48) who received care in safety-net settings and their primary care providers (n = 23). We conducted semi-structured interviews and clinical and home-based participant observation from 2018 to 2020. Here we focus our analyses on how patients and providers explained and situated the role of patient trauma in the larger clinical context of reductions in opioid prescribing to highlight the political landscape of the United States opioid overdose crisis and its impact on clinical interactions. Findings reveal the disproportionate burden structurally-produced, racialized trauma places on CNCP, substance use and mental health symptoms that shapes patients’ embodied experiences of pain and substance use, as well as their emotional experiences with their providers. Experiences of trauma impacted clinical care trajectories, yet providers and patients expressed limited options for redress. We argue for an adaptation of trauma-informed care approaches that contextualize the structural determinants of trauma and their interplay with interpersonal experiences to improve clinical care outcomes.

Cover page of The role of polygenic risk scores in breast cancer risk perception and decision-making.

The role of polygenic risk scores in breast cancer risk perception and decision-making.

(2023)

Polygenic risk scores (PRS) have the potential to improve the accuracy of clinical risk assessments, yet questions about their clinical validity and readiness for clinical implementation persist. Understanding how individuals integrate and act on the information provided by PRS is critical for their effective integration into routine clinical care, yet few studies have examined how individuals respond to the receipt of polygenic risk information. We conducted an embedded Ethical, Legal, and Social Implications (ELSI) study to examine if and how unaffected participants in a US population breast cancer screening trial understood and utilized PRS, as part of a multifactorial risk score combining traditional risk factors with a genetic risk assessment, to make screening and risk-reduction decisions. Semi-structured qualitative interviews were conducted with 24 trial participants who were designated at elevated risk for breast cancer due to their combined risk score. Interviews were analyzed using a grounded theory approach. Participants understood PRS conceptually and accepted it as one of many risk factors to consider, yet the value and meaning they ascribed to this risk estimate varied. Most participants reported financial and insurance barriers to enhanced screening with MRI and were not interested in taking risk-reducing medications. These findings contribute to our understanding of how PRS may be best translated from research to clinical care. Furthermore, they illuminate ethical concerns about identifying risk and making recommendations based on polygenic risk in a population screening context where many may have trouble accessing appropriate care.

The intersection of drug use discrimination and racial discrimination in the management of chronic non-cancer pain in United States primary care safety-net clinics: Implications for healthcare system and clinic-level changes

(2023)

Background

Clinicians' bias related to patients' race and substance use history play a role in pain management. However, patients' or clinicians' understandings about discriminatory practices and the structural factors that contribute to and exacerbate these practices are underexamined. We report on perceptions of discrimination from the perspectives of patients with chronic non-cancer pain (CNCP) and a history of substance use and their clinicians within the structural landscape of reductions in opioid prescribing in the United States.

Methods

We interviewed 46 clinicians and 94 patients, using semi-structured interview guides, from eight safety-net primary care clinics across the San Francisco Bay Area from 2013 to 2020. We used a modified grounded theory approach to code and analyze transcripts.

Results

Clinicians discussed using opioid prescribing guidelines with the goals of increased opioid safety and reduced bias in patient monitoring. While patients acknowledged the validity of clinicians' concerns about opioid safety, they indicated that clinicians made assumptions about opioid misuse towards Black patients and patients suspected of substance use. Clinicians discussed evidence of discrimination in opioid prescribing at the clinic-wide level; racialized stereotypes about patients likely to misuse opioids; and their own struggles to overcome discriminatory practices regarding CNCP management.

Conclusion

While clinicians and patients acknowledged opioid safety concerns, the practical application of opioid prescribing guidelines impacted how patients perceived and engaged with CNCP care particularly for patients who are Black and/or report a history of substance use. We recommend healthcare system and clinic-level interventions that may remediate discriminatory practices and associated disparities.

Cover page of Identifying the Needs of Primary Care Providers Caring for Breast and Colon Cancer Survivors in the Safety-Net: a Qualitative Study.

Identifying the Needs of Primary Care Providers Caring for Breast and Colon Cancer Survivors in the Safety-Net: a Qualitative Study.

(2023)

As the number of cancer survivors continues to increase and given the shortage of oncology clinicians in safety net health care settings, primary care providers (PCPs) in these settings will increasingly provide cancer survivorship care. In order to ensure equitable care for low-income and underserved breast and colon cancer survivors, it is essential to understand the safety-net PCPs' perspective. We conducted semi-structured, in-depth qualitative interviews with 11 PCPs working in a safety-net health care system to identify their needs in caring for cancer survivors. Interviews were audio-recorded and professionally transcribed. Two coders independently coded the interviews and conducted regular meetings until we reached consensus on the results. Analysis was based in grounded theory and performed using the constant comparative method. Thematic analysis identified six themes as follows: (1) Cancer survivorship care can be integrated with the whole person and chronic disease care management that occurs in primary care; (2) PCPs' perceptions regarding patients' survivorship care needs and their confidence in meeting those needs; (3) preference for a shared care model; (4) coordination of care; (5) PCPs' need for survivorship care education and training; and (6) unique issues involved in the care of older cancer survivors. PCPs in the safety-net believe that providing comprehensive survivorship care requires coordination of care through the cancer continuum. Tools like checklists, electronic health records-based communication, and convenient electronic consultations with cancer specialists would enhance the quality of survivorship care. Respondents advocate the inclusion of survivorship care education in medical education. The continuity of care with PCPs means that they play a particularly important role in the care of older cancer survivors.

Cover page of Post-Resettlement Food Insecurity: Afghan Refugees and Challenges of the New Environment.

Post-Resettlement Food Insecurity: Afghan Refugees and Challenges of the New Environment.

(2023)

Background

Lack of access to adequate, safe, and nutritious food is a major concern for the Afghan population due to ongoing war and humanitarian crises. Recently resettled Afghan refugees in the US continue to face challenges securing adequate, nutritious food resources in new environments. This study examined Afghan refugees' food access and insecurity in the San Joaquin Valley, California.

Methods

Semi-structured, in-depth interviews were conducted to collect the perspectives and experiences of key informants and newly arrived Afghan refugees.

Results

This study highlights environmental and structural factors (availability and accessibility of grocery stores; availability of religious-appropriate items in the stores; the public benefit received by a family; and public transportation) and individual factors (religious and cultural practices; financial and language barriers) as major determinants of post-resettlement food insecurity.

Conclusion

Increasing the accessibility and affordability of culturally and religiously appropriate food items within the US food system, enhancing the collaboration of community volunteers and resettlement organizations in the direct assistance of new families, and providing continuous access to public benefits are possible steps to mitigate the risk of food insecurity among Afghan refugees. This study suggests a continuous examination of the degree of food insecurity in this population and its attendant health impacts.

Cover page of Public support for policies to regulate flavoured tobacco and e-cigarette products in rural California.

Public support for policies to regulate flavoured tobacco and e-cigarette products in rural California.

(2023)

Introduction

Flavoured tobacco control policy exemptions and electronic cigarette products may contribute to increased youth access and tobacco use disparities.

Methods

We assessed public support among California Central Valley residents for four policies to regulate flavoured tobacco products and e-cigarettes. The probability-based, multimode survey was conducted with English-speaking and Spanish-speaking registered voters (n=845) across 11 counties between 13 and 18 August 2020. Weighted logistic regression analyses measured odds of policy support, adjusting for predictor variables (attitudes and beliefs) and covariates.

Results

The weighted sample was 50% female and predominantly Latino (30%) or non-Hispanic white (46%); 26% had a high school education or less, and 22% an annual household income DiscussionFindings add to mounting evidence of support for policies to regulate flavoured tobacco and e-cigarette products. Results on attitudes and beliefs elucidate how these factors influence support.

Cover page of Telehealth for management of chronic non-cancer pain and opioid use disorder in safety net primary care.

Telehealth for management of chronic non-cancer pain and opioid use disorder in safety net primary care.

(2023)

Background

The SARS-CoV-2 (COVID-19) pandemic increased use of telehealth for the management of opioid use disorder and chronic non-cancer pain in primary care safety net clinical systems. Significant barriers to telehealth exist, little is known about how these barriers impact urban safety net, primary care providers and their patients. The objective of this study was to qualitatively assess the benefits and challenges of telehealth for management of chronic non-cancer pain, opioid use disorder, and multi-morbidity in primary care, safety net clinical systems.

Methods

We interviewed patients with chronic non-cancer pain and history of substance use (n = 22) and their primary care clinicians (n = 7) in the San Francisco Bay Area, March-July 2020. We recorded, transcribed, coded, and content analyzed interviews.

Results

COVID-19 shelter-in-place orders contributed to increases in substance use and uncontrolled pain, and posed challenges for monitoring opioid safety and misuse through telehealth. None of the clinics used video visits due to low digital literacy/access. Benefits of telehealth included decreased patient burden and missed appointments and increased convenience and control of some chronic conditions (e.g., diabetes, hypertension). Telehealth challenges included loss of contact, greater miscommunication, and less comprehensive care interactions.

Conclusions

This study is one of the first to examine telehealth use in urban safety net primary care patients with co-occurring chronic non-cancer pain and substance use. Decisions to continue or expand telehealth should consider patient burden, communication and technology challenges, pain control, opioid misuse, and medical complexity.

Cover page of The REPAIR Project: A Prospectus for Change Toward Racial Justice in Medical Education and Health Sciences Research: REPAIR Project Steering Committee.

The REPAIR Project: A Prospectus for Change Toward Racial Justice in Medical Education and Health Sciences Research: REPAIR Project Steering Committee.

(2022)

Amidst ongoing efforts to address racial injustice, U.S. medical institutions are grappling with the structural roots of anti-Black racism. The REPAIR (REParations and Anti-Institutional Racism) Project is a 3-year strategic initiative at the University of California, San Francisco aiming to address anti-Black racism and augment the presence and voices of people of color in science, medicine, and health care. The REPAIR Project was designed in response to an unmet need for critical dialogue, cross-disciplinary research, and curriculum development addressing structural racism. It offers a framework for thinking and acting to achieve repair in relation to racial injustice and is anchored by 3 concepts-reparations, abolition, and decolonization-which have been deployed as annual themes in academic years 2020-2021, 2021-2022, and 2022-2023, respectively. The theme of medical reparations builds on the longstanding call for slavery reparations and the paying of debts owed to Black Americans for the harms of slavery. The REPAIR Project focuses on the specific debts owed to Black Americans for racial harm in health care settings. The theme of medical abolition examines the intersections of incarceration, policing, and surveillance in health care and the role of clinicians in furthering or stopping oppressive practices that bind patterns of Black incarceration to health and health care. The theme of decolonizing the health sciences targets "othering" practices entrenched in scientific methodologies that have arisen from colonial-era beliefs and practices around imperialism, including how the colonial-era concept of race contributes to ongoing racial harm. In this article, the authors describe the REPAIR Project, preliminary outcomes from its first year, and potential future lines of inquiry for medical educators and health sciences researchers. The authors argue that the full damage from slavery and its legacies cannot be undone, but everyone can work in new ways that reduce or eliminate harm.

Cover page of Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews

Literacy-adapted, electronic family history assessment for genetics referral in primary care: patient user insights from qualitative interviews

(2022)

Background

Risk assessment for hereditary cancer syndromes is recommended in primary care, but family history is rarely collected in enough detail to facilitate risk assessment and referral - a roadblock that disproportionately impacts individuals with healthcare access barriers. We sought to qualitatively assess a literacy-adapted, electronic patient-facing family history tool developed for use in diverse, underserved patient populations recruited in the Cancer Health Assessments Reaching Many (CHARM) Study.

Methods

Interview participants were recruited from a subpopulation of CHARM participants who experienced barriers to tool use in terms of spending a longer time to complete the tool, having incomplete attempts, and/or providing inaccurate family history in comparison to a genetic counselor-collected standard. We conducted semi-structured interviews with participants about barriers and facilitators to tool use and overall tool acceptability; interviews were recorded and professionally transcribed. Transcripts were coded based on a codebook developed using inductive techniques, and coded excerpts were reviewed to identify overarching themes related to barriers and facilitators to family history self-assessment and acceptability of the study tool.

Results

Interviewees endorsed the tool as easy to navigate and understand. However, they described barriers related to family history information, literacy and language, and certain tool functions. Participants offered concrete, easy-to-implement solutions to each barrier. Despite experience barriers to use of the tool, most participants indicated that electronic family history self-assessment was acceptable or preferable in comparison to clinician-collected family history.

Conclusions

Even for participants who experienced barriers to tool use, family history self-assessment was considered an acceptable alternative to clinician-collected family history. Barriers experienced could be overcome with minor adaptations to the current family history tool.

Trial registration

This study is a sub-study of the Cancer Health Assessments Reaching Many (CHARM) trial, ClinicalTrials.gov, NCT03426878. Registered 8 February 2018.