Kathleen Johnston Roberts

Physician-Patient Relationships, Patient Satisfaction, and Antiretroviral Medication Adherence Among HIV-Infected Adults Attending a Public Health Clinic

The goal of this project was to explore the connections between human immunodeficiency virus (HIV)-positive patients adherence to antiretroviral medication treatment regimens and their beliefs about and satisfaction with their primary care physicians. In-depth interviews were conducted with 28 HIV-positive patients. Results showed that most patients were extremely satisfied with their current primary care physicians. When patients were dissatisfied with their care, it was often because there was a mismatch between the patients expectations of care and the physicians consultation style. Results also showed that good quality physician-patient relationships tended to promote adherence while lesser quality relationships impeded it. Findings suggest that strengthening and promoting the bonds between physicians and HIV/acquired immunodeficiency syndrome (AIDS) patients should be an absolute priority, at both the interpersonal level of physician-patient interactions but also at the organizational level.

Barriers to Antiretroviral Adherence among HIV-Infected Adults

Success of highly active antiretroviral therapies (HAART) relies on HIV-infected patients being able to adhere to complicated treatment regimens for extremely long periods of time. Four focus groups with patients taking antiretrovirals (N = 39) were conducted to: (1) determine what strategies facilitate successful adherence; (2) determine what barriers prevent adherence; and (3) investigate the health-care provider and patient relationship and how it may impact adherence. Quantitative and qualitative information was gathered. Participants were prescribed an average of 15 pills per day (M = 14.7, SD = 6.3, range 4 to 36). Findings from the quantitative data revealed that the three strategies used most often to aid adherence were: carrying special containers for medication; having a health-care provider explain or clarify medication requirements; and carrying food and water for adherence to special instructions. The most difficult barriers for patients were sleeping through dose time, problems in following special instructions, and changes in daily routines. From the qualitative data, four main categories of barriers and aids to adherence emerged: patient characteristics, the health-care provider-patient relationship, the health-care system, and issues related to the medication regimen. Barriers related to the health care provider-patient relationship included patient satisfaction with their provider, as well as quality of communication with the provider. In addition, health-care system barriers caused difficulty in maintaining adherence. Implications for patient as well as provider interventions are discussed.

Barriers to antiretroviral medication adherence in HIV-infected women

Little is known about the barriers which women living with HIV/AIDS encounter that impede their adherence to antiretroviral medication regimens. Yet in order to design effective interventions to improve womens adherence, it is first imperative to identify the factors that contribute to their non-adherence. The purpose of this study was to explore, from HIV-infected womens own perspectives, the barriers they faced in adhering to combination antiretroviral therapies. Twenty HIV-infected women were asked to keep a personal journal for a period of one month. In the journals, women wrote about what their lives were like while taking antiretroviral medications. Line-by-line open coding was done to identify major ideas and themes within the journal entries. Results showed that women faced six main barriers to adherence, those related to: (1) medication regimens, (2) side effects, (3) social relationships, (4) medication beliefs, (5) daily schedules, and (6) body weight. The findings underscore the difficult nature of the antiretroviral regimens and illuminate the daily obstacles women face in adhering to therapy. Interventions that target womens unique barriers are needed to improve adherence to antiretroviral medication regimens.

HIV vaccine trial participation among ethnic minority communities: barriers, motivators, and implications for recruitment.

Background:Underrepresentation of ethnic minority communities limits the generalizability of HIV vaccine trial results. We explored perceived barriers and motivators regarding HIV vaccine trial participation among low-socioeconomic ethnic minority respondents at risk for HIV. Methods:Six focus group interviews were conducted using a semistructured interview guide. Participants (N = 58, mean age = 36 years, 37% female, and 56% Latino/a and 35% African American) were recruited using venue-based sampling in Los Angeles. Data were analyzed using narrative thematic analysis and Ethnograph qualitative software. Results:Perceived barriers to HIV vaccine trial participation, in rank order, were (1) vaccine-induced HIV infection, (2) physical side effects, (3) uncertainty about vaccine efficacy, (4) uncertainty about other vaccine characteristics, (5) mistrust, (6) low perceived HIV risk, (7) study demands, (8) stigma, and (9) vaccine-induced HIV seropositivity. Motivators were (1) protection against HIV infection, (2) free insurance and/or medical care, (3) altruism, and (4) monetary incentives. Conclusions:Population-specific HIV vaccine trial recruitment and implementation strategies should address trial risks from a family perspective, cultural gender norms, mistrust, low perceived HIV risk, the importance of African-American and Latino/a community participation in HIV vaccine trials, and misconceptions about gaining protection against HIV infection. Increasing the cultural relevance of trial recruitment and implementation should facilitate the participation of Latinos/as and African Americans in HIV vaccine trials.

Patient empowerment in the United States: a critical commentary

Whilst there is no consensus amongst analysts regarding how best to define ‘patient empowerment’, at the very least, this concept entails a re‐distribution of power between patients and physicians. Empowered patients attempt to take charge of their own health and their interactions with health care professionals. Empowerment can occur at different levels (micro, meso, and macro) and patients have different ideas about what it means to ‘take charge’ and ‘be empowered’. Some patients simply want to be given information about their conditions whilst others want to have full control over all medical decision‐making. Some empirical evidence suggests that active patient participation in health care is associated with better patient outcomes. This field is ripe for future studies which both help to develop theoretical models of patient empowerment and articulate the conditions under which patient empowerment occurs.

Posttrial Hiv Vaccine Adoption: Concerns, Motivators, and Intentions Among Persons at Risk For Hiv

Background:Suboptimal uptake of existing vaccines, potential obstacles specific to HIV/AIDS stigma and mistrust, and marked health disparities suggest that it is vital to investigate consumer concerns, motivations, and adoption intentions regarding posttrial HIV vaccines before a vaccine is publicly available. Method:Nine focus groups were conducted with participants (n = 99; median age, 33 years; 48% female; 22% African American, 44% Latino, and 28% white) recruited from 7 high-risk venues in Los Angeles using purposive venue-based sampling. A semistructured interview guide elicited concerns, motivators, and adoption intentions regarding hypothetical U.S. Food and Drug Administration–approved HIV vaccines. Data were analyzed using narrative thematic analysis and Ethnograph qualitative software. Results:Concerns included vaccine efficacy, vaccine-induced infection, vaccine-induced HIV seropositivity, side effects, cost/access, trustworthiness, and relationship issues. Motivators included protection against HIV infection and the ability to safely engage in unprotected sex. Participants expressed reluctance to adopt partial efficacy vaccines and likelihood of increased sexual risk behaviors in response to vaccine availability. Conclusion:Tailored interventions to facilitate uptake of future U.S. Food and Drug Administration–approved HIV vaccines and to prevent risk behavior increases may be vital to the effectiveness of vaccines in controlling the AIDS pandemic.

Regrets and Advice from Mothers who have Disclosed their HIV + Serostatus to their Young Children

Qualitative interviews were conducted with mothers (N = 47) who had disclosed their HIV status to their child. Mothers described their preparation and the process of the disclosure event, and discussed any regrets they had about disclosing or the process of disclosing. They were also asked what advice they had for other HIV-positive mothers who were trying to determine whether to disclose their serostatus to their young children. Overall, the majority of the mothers (68%) did not regret disclosing their HIV status. Regrets fell into five categories: preparation, timing, context, content, and outcomes of the disclosure event. Based on these findings, mothers who have not disclosed their serostatus to their children need assistance with behavioral practice and support in order to prepare for the process. Furthermore, follow-up support for the children may be beneficial.

Facilitators and Barriers to Use of the Female Condom: Qualitative Interviews with Women of Diverse Ethnicity

ABSTRACT Women in the United States, particularly African-Americans and Hispanics, are at increased risk for HIV. The female condom now offers women a potentially important option for HIV prevention, yet few efforts have been made to increase its use. To elucidate strategies to promote the use of the female condom, we conducted in-depth interviews with 62 women recruited from the four major racial/ethnic groups of the U.S. (African-American, Asian-American, Hispanic, and white). Subject recruitment took place at a family planning clinic in San Francisco during 1996–97. We identified four major types of facilitators and barriers to use of the female condom: mechanical, psychosexual, interpersonal, and situational. Specifically, the mechanical facilitators and barriers included positive and negative aspects of the device, and difficulty with insertion. The psychosexual factors were female empowerment, more options for contraception and disease prevention, discomfort with vaginal insertion, and condom use norms. The interpersonal factors included: enhanced communication, relationship status, partner preferences, and partner objections. Finally, the situations that made women disinclined to use the device were: no access to the female condom when having sex and using other forms of contraceptives. The implications of these findings for HIV prevention and future research are discussed.

What can HIV vaccine trials teach us about future HIV vaccine dissemination

This investigation explored commonalities and differences in barriers and motivators to HIV vaccine trial participation and acceptability of future U.S. Food and Drug Administration (FDA)-approved HIV vaccines in order to identify implications of clinical trials for future HIV vaccine dissemination. Fifteen focus groups were conducted with 157 predominately ethnic minority and low income participants recruited using venue-based sampling in Los Angeles. Data were analyzed using narrative thematic analysis. Barriers and motivators in common across willingness to participate (WTP) in HIV vaccine trials and future HIV vaccine acceptability (e.g., concerns about vaccine-induced infection, false-positives, side effects, efficacy, mistrust and stigma) suggest clinical trials present significant opportunities to develop and evaluate empirically based interventions to support future HIV vaccine dissemination. Barriers specific to HIV vaccine acceptability (e.g., concerns about duration of protection, cross-clade protection, cost and access) also indicate the need for formative research focused specifically on future dissemination. Protection motivation, common to WTP and acceptability, highlights the need to provide and evaluate prevention counseling and education in clinical trials, which may form the basis of evidence-informed preventive interventions to be launched in tandem with dissemination of partial efficacy HIV vaccines.

A Small Dose of HIV? HIV Vaccine Mental Models and Risk Communication

Existing knowledge and beliefs related to HIV vaccines provide an important basis for the development of risk communication messages to support future HIV vaccine dissemination. This study explored HIV vaccine mental models among adults from segments of the population disproportionately affected by HIV/AIDS. Nine focus groups were conducted with participants (N = 99; median age = 33 years; 48% female; 22% African American, 44% Latino, and 28% white) recruited from needle exchange sites, public clinics, and gay community centers in Los Angeles. Data were analyzed using narrative thematic analysis and Ethnograph qualitative software. Mental models of HIV vaccines included live virus, side effects, complete protection (100% efficacy, lifetime protection, reduced anxiety about HIV/AIDS), and “high-risk groups.” HIV vaccine risk communication to counter undue fears of vaccine-induced infection and side effects and to mitigate exaggerated expectations of a “magic bullet” may be vital to the effectiveness of first-generation HIV vaccines in controlling the AIDS epidemic.