Food is Medicine for HIV: Improved health and hospitalizations in the Changing Health through Food Support (CHEFS-HIV) pragmatic randomized trial.

BACKGROUND: Policy support for "Food is Medicine"-medically tailored meals or groceries to improve health-is rapidly growing. No randomized trials have heretofore investigated the benefits of medically tailored food programs for people living with HIV (PLHIV). METHODS: The CHEFS-HIV pragmatic randomized trial included PLHIV who were clients of Project Open Hand (POH), a San Francisco-based nonprofit food organization. The intervention arm (n = 93) received comprehensive medically tailored meals, groceries, and nutritional education. Control participants (n = 98) received less intensive (POH "standard of care") food services. Health, nutrition, and behavioral outcomes were assessed at baseline and 6 months later. Primary outcomes measured were viral non-suppression and health related quality of life. Mixed models estimated treatment effects as differences-in-differences between arms. RESULTS: The intervention arm had lower odds of hospitalization (odds ratio [OR] = 0.11), food insecurity (OR = 0.23), depressive symptoms (OR = 0.32), antiretroviral therapy adherence <90% (OR = 0.18), and unprotected sex (OR = 0.18), and less fatty food consumption (ß= -0.170 servings/day) over 6 months, compared to the control arm. There was no difference between study arms in viral non-suppression and health-related quality of life over 6 months. CONCLUSIONS: A "Food-is-Medicine" intervention reduced hospitalizations and improved mental and physical health among PLHIV, despite no impact on viral suppression. CLINICAL TRIALS REGISTRATION: NCT03191253.

Exploring the role of motherhood in healthcare engagement for women living with HIV in the USA.

Mothers living with HIV are faced with managing their own complex healthcare and wellness needs while caring for their children. Understanding the lived experiences of mothers living with HIV, including grandmothers and mothers with older children - who are less explicitly represented in existing literature, may guide the development of interventions that best support them and their families. This study sought to explore the role of motherhood and related social/structural factors on engagement with HIV care, treatment-seeking behaviour, and overall HIV management among mothers living with HIV in the USA to inform such efforts. Semi-structured interviews were conducted between June and December 2015 with 52 mothers living with HIV, recruited from the Women's Interagency HIV Study (WIHS) sites in four US cities. Five broad themes were identified from the interviews: children as a motivation for optimal HIV management; children as providing logistical support for HIV care and treatment; the importance of social support for mothers; stressors tied to responsibilities of motherhood; and stigma about being a mother living with HIV. Findings underscore the importance of considering the demands of motherhood when developing more effective strategies to support mothers in managing HIV and promoting the overall health and well-being of their families.

Mixed Methods for Research on Support Networks of People Experiencing Chronic Illness and Social Marginalization.

Substantial research has focused on how social networks help individuals navigate the illness experience. Sociologists have begun to theorize beyond the binary of strong and weak social network ties (e.g., compartmental, elastic, and disposable ties), citing the social, economic, and health conditions that shape their formation. However, limited research has employed mixed social network methods, which we argue is especially critical for examining the "non-traditional" social support networks of marginalized individuals. We employ quantitative social network methods (i.e., the egocentric network approach) in addition to in-depth interviews and observations, with a novel tool for capturing network data about social groups, to surface these kinds of supportive relationships. Using the case of "nameless ties"-non-kin, non-provider ties who were unidentifiable by given name or were grouped by context or activity rather than individually distinguished-we show how mixed social network methods can illuminate supporters who are commonly overlooked when only using traditional social network analysis. We conclude with a proposal for mixed methods and group alter approaches to successfully observe liminal support ties that is ideal for research about individuals experiencing chronic disability, poverty, housing insecurity, and other forms of social marginalization.

Direct-acting antiviral treatment for HIV/HCV patients in safety net settings: patient and provider preferences.

HIV/HCV coinfected patients are a priority for direct acting antiretroviral (DAA) treatment, yet barriers to treating vulnerable patients persist. This study surveyed safety net clinic patients and providers to quantify their preferences for DAA treatment and prioritize modifiable barriers. Preferences were assessed using best-worst scaling. General linear mixed models were used to determine whether attributes differed in importance and whether patients and providers valued attributes differently. 158 HIV/HCV coinfected patients and 49 providers participated. Patients and providers had strong preferences for treatment within the medical homes where patients receive HIV care. Support such as reminders and advice numbers were also important, but were more important to providers than patients. Providers identified lack of insurance coverage for DAA as the most significant barrier. Providers rated HIV primary care providers as best suited to deliver DAA to HIV+ patients. Addressing structural barriers is essential for increasing DAA treatment in safety net settings.

HCV treatment barriers among HIV/HCV co-infected patients in the US: a qualitative study to understand low uptake among marginalized populations in the DAA era.

BACKGROUND: Well-tolerated, highly effective HCV treatment, known as direct-acting antivirals (DAAs), is now recommended for all people living with HCV, providing the tools for HCV elimination. We sought to understand treatment barriers among low-income HIV/HCV coinfected patients and providers with the goal of increasing uptake. METHODS: In 2014, we conducted 26 interviews with HIV/HCV co-infected patients and providers from a San Francisco clinic serving underinsured and publically-insured persons to explore barriers impacting treatment engagement and completion. Interview transcripts were coded, and a thematic analysis was conducted to identify emerging patterns. RESULTS: Conditions of poverty-specifically, meeting basic needs for food, shelter, and safety-undermined patient perceptions of self-efficacy to successfully complete HCV treatment programs. While patient participants expressed interest in HCV treatment, the perceived burden of taking daily medications without strong social support was an added challenge. This need for support contradicted provider assumptions that, due to the shorter-course regimens, support is unnecessary in the DAA era. CONCLUSIONS: Interferon-free treatments alone are not sufficient to overcome social-structural barriers to HCV treatment and care among low-income HIV/HCV co-infected patients. Support for patients with unmet social needs may facilitate treatment initiation and completion, particularly among those in challenging socioeconomic situations.

Assessing Patient Activation among High-Need, High-Cost Patients in Urban Safety Net Care Settings.

We sought to examine the literature using the Patient Activation Measure (PAM) or the Patient Enablement Instrument (PEI) with high-need, high-cost (HNHC) patients receiving care in urban safety net settings. Urban safety net care management programs serve low-income, racially/ethnically diverse patients living with multiple chronic conditions. Although many care management programs track patient progress with the PAM or the PEI, it is not clear whether the PAM or the PEI is an effective and appropriate tool for HNHC patients receiving care in urban safety net settings in the United States. We searched PubMed, EMBASE, Web of Science, and PsycINFO for articles published between 2004 and 2015 that used the PAM and between 1998 and 2015 that used the PEI. The search was limited to English-language articles conducted in the United States and published in peer-reviewed journals. To assess the utility of the PAM and the PEI in urban safety net care settings, we defined a HNHC patient sample as racially/ethnically diverse, low socioeconomic status (SES), and multimorbid. One hundred fourteen articles used the PAM. All articles using the PEI were conducted outside the U.S. and therefore were excluded. Nine PAM studies (8%) included participants similar to those receiving care in urban safety net settings, three of which were longitudinal. Two of the three longitudinal studies reported positive changes following interventions. Our results indicate that research on patient activation is not commonly conducted on racially and ethnically diverse, low SES, and multimorbid patients; therefore, there are few opportunities to assess the appropriateness of the PAM in such populations. Investigators expressed concerns with the potential unreliability and inappropriate nature of the PAM on multimorbid, older, and low-literacy patients. Thus, the PAM may not be able to accurately assess patient progress among HNHC patients receiving care in urban safety net settings. Assessing progress in the urban safety net care setting requires measures that account for the social and structural challenges and competing demands of HNHC patients.

How food support improves mental health among people living with HIV: A qualitative study.

BACKGROUND: Food insecurity is associated with poor mental health among people living with HIV (PLHIV). This qualitative study explored the mental health experiences of PLHIV participating in a medically appropriate food support program. METHODS: Semi-structured interviews were conducted post-intervention (n = 34). Interview topics included changes, or lack thereof, in mental health and reasons for changes. Interviews were audio-recorded, transcribed, and double-coded. Salient themes were identified using an inductive-deductive method. RESULTS: Positive changes in mental health self-reported by PLHIV included improved mood and reduced stress, worry, and anxiety. Participants attributed these changes to: 1) increased access to sufficient and nutritious foods, 2) increased social support, 3) reduced financial hardship, 4) increased sense of control and self-esteem, and 5) reduced functional barriers to eating. CONCLUSIONS: Medically appropriate food support may improve mental health for some PLHIV. Further work is needed to understand and prevent possible adverse consequences on mental health after programs end.

Social Literacy: Nurses' Contribution Toward the Co-Production of Self-Management.

We share findings from a larger ethnographic study of two urban complex care management programs in the Western United States. The data presented stem from in-depth interviews conducted with 17 complex care management RNs and participant observations of home visits. We advance the concept of social literacy as a nursing attribute that comprises an RN's recognition and responses to the varied types of hinderances to self-management with which patients must contend in their lived environment. It is through social literacy that complex care management RNs reconceptualize and understand health literacy to be a product born out of the social circumstances in which patients live and the stratified nature of the health care systems that provide them care. Social literacy provides a broader framework for health literacy-one that is situated within the patient's social context through which complex care management RNs must navigate for self-management goals to be achieved.

A Mixed Methods Study of Anticipated and Experienced Stigma in Health Care Settings Among Women Living with HIV in the United States.

Among places where people living with HIV experience and anticipate HIV-related stigma, stigma in health care settings may be particularly harmful. Utilizing an exploratory sequential mixed methods approach, we conducted interviews (n = 76) and questionnaires (N = 460) with older adult women living with HIV enrolled in the Women's Interagency HIV Study in Birmingham, AL; Jackson, MS; Atlanta, GA; and San Francisco, CA. Interviews addressed facilitators and barriers to HIV treatment adherence, including HIV-related stigma. Qualitative data were coded using thematic analysis. Questionnaires assessed self-reported antiretroviral therapy (ART) adherence and experienced and anticipated HIV-related stigma from various sources (i.e., health care personnel, family, partner, and community). Covariate-adjusted logistic regression analyses examined total and mediated effects of stigma on ART adherence. Interviewees described fears and experiences of stigma in health care settings; including privacy violations, disrespect for patient autonomy, and reproductive coercion; and how these influenced their adherence to HIV treatment recommendations. Experienced and anticipated HIV-related stigma in health care settings were associated with suboptimal (or <95%) ART adherence in separate models controlling for experienced or anticipated stigma, respectively, from other sources. When entered together, only anticipated stigma in health care settings was associated with suboptimal ART adherence, controlling for anticipated and experienced stigma from other sources. The effect of anticipated stigma in health care settings on suboptimal ART adherence may work through the pathways of lower adherence self-efficacy, higher depressive symptoms, and higher coping by substance use. These findings indicate that interventions should promote cultures of acceptance within health care settings and resilience-based strategies for women to combat stigma and promote life-sustaining behaviors.

Perceptions of intersectional stigma among diverse women living with HIV in the United States.

Attitudes and behavior that devalue individuals based upon their HIV status (HIV-related stigma) are barriers to HIV prevention, treatment, and wellbeing among women living with HIV. Other coexisting forms of stigma (e.g., racism, sexism) may worsen the effects of HIV-related stigma, and may contribute to persistent racial and gendered disparities in HIV prevention and treatment. Few studies examine perceptions of intersectional stigma among women living with HIV. From June to December 2015, we conducted 76 qualitative interviews with diverse women living with HIV from varied socioeconomic backgrounds enrolled in the Women's Interagency HIV Study (WIHS) in Birmingham, Alabama; Jackson, Mississippi; Atlanta, Georgia; and San Francisco, California. Interview guides facilitated discussions around stigma and discrimination involving multiple interrelated identities. Interviews were audio-recorded, transcribed verbatim, and coded using thematic analysis. Interviewees shared perceptions of various forms of stigma and discrimination, most commonly related to their gender, race, and income level, but also incarceration histories and weight. Women perceived these interrelated forms of social marginalization as coming from multiple sources: their communities, interpersonal interactions, and within systems and structures. Our findings highlight the complexity of social processes of marginalization, which profoundly shape life experiences, opportunities, and healthcare access and uptake among women living with HIV. This study highlights the need for public health strategies to consider community, interpersonal, and structural dimensions across intersecting, interdependent identities to promote the wellbeing among women living with HIV and to reduce social structural and health disparities.

Survivorship Care Plan Information Needs: Perspectives of Safety-Net Breast Cancer Patients.

PURPOSE: Despite the Institute of Medicine's (IOM) 2005 recommendation, few care organizations have instituted standard survivorship care plans (SCPs). Low health literacy and low English proficiency are important factors to consider in SCP development. Our study aimed to identify information needs and survivorship care plan preferences of low literacy, multi-lingual patients to support the transition from oncology to primary care and ongoing learning in survivorship. METHODS: We conducted focus groups in five languages with African American, Latina, Russian, Filipina, White, and Chinese medically underserved breast cancer patients. Topics explored included the transition to primary care, access to information, knowledge of treatment history, and perspectives on SCPs. RESULTS: Analysis of focus group data identified three themes: 1) the need for information and education on the transition between "active treatment" and "survivorship"; 2) information needed (and often not obtained) from providers; and 3) perspectives on SCP content and delivery. CONCLUSIONS: Our data point to the need to develop a process as well as written information for medically underserved breast cancer patients. An SCP document will not replace direct communication with providers about treatment, symptom management and transition, a communication that is missing in participating safety-net patients' experiences of cancer care. Women turned to peer support and community-based organizations in the absence of information from providers. IMPLICATIONS FOR CANCER SURVIVORS: "Clear and effective" communication of survivorship care for safety-net patients requires dedicated staff trained to address wide-ranging information needs and uncertainties.