Preventive Care for Women in Prison: A Qualitative Community Health Assessment of the Papanicolaou Test and Follow-Up Treatment at a California State Women’s Prison

Growing evidence indicates that women in prison are particularly vulnerable to many negative health outcomes, including cervical cancer. The Papanicolaou (Pap) test is an effective tool to screen for this disease. To determine what is and is not working with the Pap test and follow-up treatment, we performed qualitative interviews with women prisoners and key informants at a California state women’s prison. Our assessment revealed that the process of administering Pap tests at this institution was not meeting the health care needs of the women interviewed. Women reported having negative experiences during the test and with their health care providers. Additionally the prison’s culture and infrastructure create obstacles that hinder prisoners from receiving quality care and providers from delivering that care. In response, women prisoners use self-and community advocacy to meet their health care needs and cope with these challenges

Illness appraisals and depression in the first year after HIV diagnosis.

Illness appraisals provide important context to help understand the way individuals cope with chronic illness. In the present study, a qualitative approach to the analysis of HIV diagnosis experience narratives in a sample of 100 people newly diagnosed with HIV revealed five groups that differed in their initial illness appraisals: HIV as Chronic Illness, Concern about Dying, Stigmatization, Threat to Identity, and Other Threats Overshadow HIV. When compared on quantitatively measured depressive mood, the groups differed on level and trajectory over the course of the first year post-diagnosis. Although the experience of living with HIV has changed significantly with the advent of effective Antiretroviral Therapies (ART), there were a number of similarities between the appraisals of this group of participants who were diagnosed post ART and groups who were diagnosed before ART became widely available. Posttest counselors and other HIV service providers should take individual differences in illness appraisals into account in order to help newly HIV-positive clients manage their healthcare and cope adaptively with their diagnosis

CES-D Score at each interview by HIV illness appraisal group.

<p>CES-D Score at each interview by HIV illness appraisal group.</p

EngageUC: Developing an Efficient and Ethical Approach to Biobanking Research at the University of California.

Biorepositories, or biobanks, provide researchers with access to biological samples and associated data in support of translational research. Efficient operation and ethical stewardship of biobanks involves coordinated efforts among multiple stakeholders including researchers who manage and use the repository, institutional officials charged with its oversight, and patients and volunteers who contribute samples and data. As advancements in translational research increasingly involve more data derived from larger numbers of diverse samples, the size and governance challenges facing biorepositories have grown. We describe an approach to developing efficient and ethical biobank governance that includes all major stakeholders. This model provides a pathway for addressing the technical and ethical challenges that must be resolved to ensure biorepositories continue to support translational research

Community recommendations on biobank governance: Results from a deliberative community engagement in California

<div><p>United States-based biorepositories are on the cusp of substantial change in regulatory oversight at the same time that they are increasingly including samples and data from large populations, e.g. all patients in healthcare system. It is appropriate to engage stakeholders from these populations in new governance arrangements. We sought to describe community recommendations for biorepository governance and oversight using deliberative community engagement (DCE), a qualitative research method designed to elicit lay perspectives on complex technical issues. We asked for stakeholders to provide input on governance of large biorepositories at the University of California (UC), a public university. We defined state residents as stakeholders and recruited residents from two large metropolitan areas, Los Angeles (LA) and San Francisco (SF). In LA, we recruited English and Spanish speakers; in SF the DCE was conducted in English only. We recruited individuals who had completed the 2009 California Health Interview Survey and were willing to be re-contacted for future studies. Using stratified random sampling (by age, education, race/ethnicity), we contacted 162 potential deliberants of whom 53 agreed to participate and 51 completed the 4-day DCE in June (LA) and September-October (SF), 2013. Each DCE included discussion among deliberants facilitated by a trained staff and simultaneously-translated in LA. Deliberants also received a briefing book describing biorepository operations and regulation. During the final day of the DCE, deliberants voted on governance and oversight recommendations using an audience response system. This paper describes 23 recommendations (of 57 total) that address issues including: educating the public, sharing samples broadly, monitoring researcher behavior, using informative consent procedures, and involving community members in a transparent process of biobank governance. This project demonstrates the feasibility of obtaining meaningful input on biorepository governance from diverse lay stakeholders. Such input should be considered as research institutions respond to changes in biorepository regulation.</p></div

Analysis of highly supported cross-site recommendations from DCEs.

<p>Analysis of highly supported cross-site recommendations from DCEs.</p