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

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.

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.

An online positive affect skills intervention reduces depression in adults with type 2 diabetes.

Positive affect predicts improved glycemic control and longevity in adults with type 2 diabetes. We tested DAHLIA, a self-paced online intervention for type 2 diabetes that teaches positive affect skills such as savoring, gratitude, and acts of kindness. Participants (n=49) were randomized to the 5-week DAHLIA course or an emotion-reporting waitlist control. DAHLIA was understood and accepted by participants and showed good retention (78%). At post-intervention, DAHLIA participants showed a significantly greater decrease in depression than controls (-4.3 vs. +0.6 points on the CES-D, p =.05). Secondary analyses found that this effect was considerably stronger in intervention recipients recruited online than those recruited in person. Intervention recipients recruited online also showed significantly increased positive affect, reduced negative affect, and reduced perceived stress. There were no effects on measures of diabetes-specific efficacy or sense of burden, or preliminary measures of health behaviors. This successful feasibility and efficacy trial provides support for a larger trial focusing more specifically on health behavior.

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.

Disclosure and nondisclosure among people newly diagnosed with HIV: an analysis from a stress and coping perspective.

Disclosing HIV status to friends, family, and sex partners is often stressful. However, HIV disclosure has been associated with improved physical health, psychological well-being, and improved health behaviors. The aim of this study was to address some of the gaps in the literature regarding the disclosure process by conducting a mixed-methods study of disclosure in people newly diagnosed with HIV and the relationship of disclosure to stigma and social support. The CHAI (Coping, HIV, and Affect Interview) Study was a longitudinal cohort study that followed individuals who were newly diagnosed with HIV. The study took place from October 2004 to June 2008 in the San Francisco Bay Area. This sample includes data from 50 participants who were interviewed 1, 3, and 9 months following diagnosis with HIV. We identified four main approaches to HIV disclosure that revealed distinct differences in how participants appraised disclosure, whether disclosure was experienced as stressful, and whether disclosure or nondisclosure functioned as a way of coping with an HIV diagnosis. Implications of these findings for disclosure counseling are discussed.

A positive affect intervention for people experiencing health-related stress: development and non-randomized pilot test.

In this article we present background, theoretical rationale, and pilot data on the development of an intervention designed to increase positive affect in people living with serious health-related stress. This proof-of-concept study demonstrated that a multiple-component positive affect intervention is feasible and acceptable for people newly diagnosed with HIV. Retention in the intervention and adherence to home practice were high. Participants reported significant increases in positive affect and significant decreases in negative affect. This positive affect intervention can serve as a template for programs to be developed to help people experiencing health-related and other types of life stress.

What works in coping with HIV? A meta-analysis with implications for coping with serious illness.

Knowledge of effective ways of coping with HIV is critical to help individuals with HIV maintain the best possible psychological and physical well-being. The purpose of the present article is to determine, through meta-analysis, the strength of the evidence regarding 2 questions: (a) Which types of coping are related to psychological and physical well-being among people with HIV? and (b) Do contextual (pre?post introduction of highly active antiretroviral therapies [HAART]; time since diagnosis), measurement (HIV-related event vs. generic prompts for coping measurement), or individual (gender) variables affect the extent to which coping is related to physical and psychological well-being? The authors' analysis demonstrates that Direct Action and Positive Reappraisal were consistently associated with better outcomes in people coping with HIV across affective, health behavior, and physical health categories. In contrast, disengagement forms of coping, such as Behavioral Disengagement and Use of Alcohol or Drugs to Cope, were consistently associated with poorer outcomes. The findings also indicate that in some cases, coping effectiveness was dependent on contextual factors, including time since diagnosis and the advent of HAART.

"I'm sorry, you're positive": a qualitative study of individual experiences of testing positive for HIV.

New CDC guidelines for HIV testing as well as the introduction of rapid tests may increase the number of HIV tests conducted in the USA and make testing a more routine part of medical care. However, little is currently known about the experience of those receiving positive results. In this study, face-to-face interviews were conducted with 50 participants who had recently learned they were HIV positive in the San Francisco Bay Area. Ninety-two percent were male, 36% were persons of color. Participants were asked to tell their story of testing positive for HIV. Interviews were transcribed for team-based narrative qualitative analysis. The majority of participants were tested at either a hospital or an HIV test site. While some suspected they might have HIV, most were tested while seeking care for another health concern or for routine testing. Fifty-eight percent had a rapid test. Test results were typically given by medical staff or HIV test counselors. The manner in which the news was delivered affected an individual's testing experience. For seven (14%) of the participants, the provider giving the results was so upset or agitated that it added to the participant's distress over the diagnosis. Responses to the news varied greatly from being too shocked to comprehend what they were being told to immediately accepting the news and feeling ready for action. The patient/provider interaction plays a pivotal role in both follow-up care and prevention decisions. Therefore, HIV service providers need to be cognizant of the way in which their role in the testing process, including delivery of the news and post-test counseling impacts the individual's experience of testing positive.

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.