Adolescent response to having an HIV-infected mother.

In this study, late adolescents/early adults whose mothers were living with HIV (MLH) were interviewed in order to explore their perceptions of what it had been like for them to grow up under the shadow of their mothers' illness. Adolescents were asked to describe what the difficult aspects of growing up with an HIV-positive mother were as well as what, if any, were the more rewarding aspects. Interviews were conducted in 2009-2010 with a random sample of 40 adolescents being followed up in a longitudinal assessment study. All study participants were English or Spanish speaking. Mean age was 18.9 years (SD = 1.9); 67.5% were Latino; 27.5% African-American; and 5% other/multiracial. Results revealed that growing up with an HIV-positive mother had both challenges as well as rewards. On the challenge side, adolescents mentioned six main issues: (1) disappointment regarding mothers' missing of childhood activities and events; (2) worry about mothers' health; (3) worry about the possibility of mothers' death; (4) increased burden of adult responsibilities/caregiving; (5) feelings of secrecy/stigma associated with HIV/AIDS; and (6) need to self-monitor behavior and communication to avoid maternal stress. On the positive side, adolescents mentioned three main rewarding aspects of growing up with an HIV-positive mother: increased closeness in the mother-child relationship; fostering of positive personality traits (e.g., resilience, gratitude, open-mindedness); and "perks" accorded to HIV-affected families.

HIV-positive mothers with late adolescent/early adult children: "empty nest" concerns.

In-depth interviews about the "empty nest" were conducted with 57 HIV-positive mothers of late adolescent/early adult children. Empty nest worries included the following: (a) identity loss, (b) loss of social support, (c) financial insecurity, (d) worsening of physical health, and (e) death/dying. Hopes included the following: (a) self-improvement, (a) change of life focus, (c) travel, (d) romantic partners, and (e) familial ties. Respondents' HIV/AIDS status colored their thoughts/feelings about the empty nest; some worries were specific to being HIV positive and would not occur for nonill mothers. Midlife HIV-positive women need health care/social service resources as they navigate health and social-psychological challenges to successful aging.

HIV-positive Mothers' Communication About Safer Sex And STD Prevention With Their Children.

Mothers play an important role in promoting the sexual health of their adolescent children. Fifty-seven HIV-positive mothers with adolescent children participated in an in-depth, qualitative interview regarding whether they have talked to their children about safer sex and STD prevention, including at what age they began such discussions, and what messages they gave to their children. The majority of mothers (95%) had talked with their child about safer sex; some began such discussions when the children were as young as 6 years old, but most began when the children were around 12 years old. Mothers' messages fell into the following areas: (1) protecting oneself from STDs; (2) giving factual information regarding STDs, including HIV; (3) avoiding pregnancy; (4) empowering and respecting oneself; and (5) communicating with sexual partners. The mothers' own HIV status impacted the discussions with their children. Content of mothers' messages, child reactions, and child outcomes are discussed.

HIV Disease Impact on Mothers: What They Miss During Their Children's Developmental Years.

Adjusting to chronic illness is very complicated for families with children, as they are already faced with the challenge of development and childrearing. In this study, qualitative interviews were conducted with HIV positive mothers on a number of issues related to being an HIV positive mother raising young children. One topic of the interview was whether or not they felt that HIV had caused them to miss activities with their children while the children were growing up, what types of activities they had missed, the age of the child for each example, and how HIV had led to missing these activities. Interviews were conducted in 2008 with a random sample of 57 mothers being followed in a longitudinal assessment study. All study participants were English or Spanish speaking. Mean age was 44.1 (SD = 5.6) years; 47% were Latina; 35% African American; 11% White; and 7% other race. About 60% of the mothers disclosed that their HIV status had caused them to miss out on activities with their children while their children were growing up, ranging from daily care activities to major school and extra-curricular activities. Some mothers missed significant amounts of time with their children due to hospitalizations. In some cases mothers felt forced into a choice between mothering ability and their own health, including adherence to medications. Implications for the mothers and the children are discussed.

Staff strategies for improving HIV detection using mobile HIV rapid testing.

This paper examines the performance of 13 mobile testing units (MTUs) and rapid HIV testing technology in Los Angeles County as reflected in the relationship between the cognitive strategies used by MTU staff regarding instructions to clients about picking up their test results and returning for test results, and following up with those clients who did not return, and the spatial distribution of MTUs and AIDS rates in 2003. Maps were created using geographic information systems (GIS) data on 93 MTU testing locations and 2003 AIDS cases data. MTU staff (N = 45) were interviewed and several themes were identified. MTU testing locations were clustered near high AIDS rate areas. Staff reports were obtained on 24 clients in the past 6 months who received HIV-negative test results and 24 clients during the same time period who received HIV-positive test results. Staff strategies that were used included keeping clients with them while rapid test results were being processed and adjusting to clients' schedules when arranging for picking up test results. Some staff used tangible incentives such as vouchers for area businesses to encourage preliminary HIV-positive clients to return for confirmatory test results. Staff also sought to convince clients who preliminarily tested HIV-positive to convert from anonymous to confidential testing in order to facilitate clients' linkage to treatment. The GIS findings and client risk data support the Centers for Disease Control and Prevention policy of implementing MTUs and rapid testing in large urban communities with high AIDS rates.

Client encounters in alternative HIV testing sites: counselors' perceptions and experiences.

In this study, the authors explored HIV test counselors' perceptions of and experiences working with "difficult" and "good" clients in alternative HIV testing sites. Trained interviewers made field observations and conducted sixteen 60-minute, semistructured interviews with counselors. Counselors reported 7 main characteristics of difficult clients: (1) uncooperative, (2) mean, (3) inebriated, (4) threatening, (5) "crazy," (6) sexually inappropriate, and (7) aesthetically unappealing/overly appealing. They also identified 3 main characteristics of good clients: (1) communicative, (2) responsive, and (3) vulnerable. In addition, HIV test counselors used 4 strategies to deal with difficult clients: (1) received help from other counselors, (2) refused to test or threatened to refuse to test, (3) verbally confronted clients, and (4) "followed the forms" (ie, asked the necessary questions on the standard risk assessment forms). Results highlight the combined importance of patient characteristics, HIV test counselor characteristics, and the testing environment in contributing to difficult and good encounters in alternative HIV testing sites and point to the need for better training and support services in this area.

Outcomes of blood and oral fluid rapid HIV testing: a literature review, 2000-2006.

Rapid HIV antibody testing is a new technology whose implementation promises to facilitate the early detection of persons with HIV/AIDS. The goal of this study was to review and summarize the literature from 2000-2006 regarding four outcomes of rapid (including both blood and oral fluid) HIV testing: rates of client acceptance; rates of clients' receiving their test results; rates of entry into medical care for those found to be HIV positive; and the efficacy of prevention counseling after testing. A total of 116 studies in peer-reviewed journals were screened. Twenty-six met the screening criteria (published in peer-reviewed journals and focused on at least one of the outcomes of interest) and were selected for review. Considerable variation was found in client acceptance rates with the highest rates among pregnant women in labor and delivery units and the lowest rates in needle exchange and bath-house settings. The evidence shows that most persons tested with a rapid test receive their test result. Three studies on entry into medical care among those who were newly identified HIV positive found rates of 47%, 82%, and 97% of clients adhering to their first medical appointment. No long-term medical follow-up studies were found. Only one study examined the efficacy of prevention counseling after rapid testing and found no statistically significant differences in the number of sexually transmitted diseases (STDs) conventional versus rapid HIV testers contracted following testing.

Failure to return for HIV test results: a pilot study of three community testing sites.

BACKGROUND: Individuals at elevated risk of contracting HIV frequently fail to return for their test result. Because rapid HIV antibody testing is still not widely implemented, failure to return for test results under conditions of standard testing remains a problem. METHODS: Direct field observation and semistructured interviews with clients (N = 16) and test counselors (N = 16) of 3 community HIV testing sites were conducted. RESULTS: Clients faced 5 barriers to receiving their result: (1) fear, (2) busyness, (3) apathy,(4) inebriation at the time of testing, and (5) testing "on a whim." Motivators that encouraged clients to receive their results were (1) positive counselor/client interactions, (2) client-friendly policies regarding picking up the test result, (3) clients' psychological "need to know," (4) incentives for picking up the result, and (5) established protocols for contacting clients who fail to return. CONCLUSION: Findings highlight the need for interventions to improve the return rate for HIV results.

Communicating indeterminate HIV Western blot test results to clients: an observational study of three community testing sites.

This study examined HIV test counselors' beliefs and practices regarding communicating indeterminate HIV test results to clients. There are many reasons for an indeterminate HIV antibody/ Western blot assay including early HIV infection, infection with other contagious diseases, autoimmune diseases, and second or subsequent pregnancies in women. Field observations of three community HIV testing sites and semistructured interviews with 16 HIV test counselors were conducted from August 2002 through June 2003. Counselors defined an indeterminate test result in different ways. They also presented several different theories of causation, yet failed to mention two potential causes of an indeterminate result, association with large animals and infection with other (non-HIV-1) HIV strains. Counselors' understanding of the meaning of an indeterminate HIV test result varied a great deal. Some counselors believed that an indeterminate result truly was ambiguous while others believed it was indicative of being either HIV-positive or HIV-negative. Counselors' primary advice to clients who received an indeterminate result was to retest immediately without a waiting period. Counselors reported that communicating indeterminate test results to clients was a challenging task because clients who received such a result were confused, angry, and/or mistrustful. Results highlight the need for further research to provide reliable estimates of the extensiveness of indeterminate HIV test results and to further assess the nature of counselor and client responses to indeterminate test results.

Anonymous versus confidential HIV testing: client and provider decision making under uncertainty.

Six intensive observational studies of HIV testing sites were undertaken in order to improve understanding of confidential and anonymous testing. Three sites offered only confidential testing (a large health maintenance organization's Urgent Care clinic, the same organization's HIV clinic, and a private medical practitioner's office), one offered only anonymous testing (a free clinic), and two offered a choice of confidential or anonymous testing (a thrift shop alternate testing site and a mobile testing unit). Multiple data collection strategies were used including direct field observation, semistructured interviews with clients and providers, and document and policy analysis. Using an organizational/interactional uncertainty framework, this study found that the choice between anonymous and confidential testing is a central aspect of the HIV testing process, that some clients are unclear about the differences between anonymous and confidential testing, that alternate testing sites' providers play a significant role in encouraging confidential rather than anonymous testing in order to further their organization's resource needs and public health goals, and that testing counselors' may consider that some clients prefer anonymous testing because of fear of stigma, discrimination, or loss of privacy.

HIV vaccine knowledge and beliefs among communities at elevated risk: conspiracies, questions and confusion.

HIV vaccines offer the best long-term hope of controlling the AIDS pandemic. We explored HIV vaccine knowledge and beliefs among communities at elevated risk for HIV/AIDS. Participants (N=99; median age=33 years; 48% female; 22% African-American; 44% Latino; 28% white; 6% other) were recruited from seven high-risk venues in Los Angeles, California, using purposive, venue-based sampling. Results from nine focus groups revealed: 1) mixed beliefs and conspiracy theories about the existence of HIV vaccines; 2) hopefulness and doubts about future HIV vaccine availability; 3) lack of information about HIV vaccines; and 4) confusion about vaccines and how they work. Tailored HIV vaccine education that addresses the current status of HIV vaccine development and key vaccine concepts is warranted among communities at risk. Ongoing dialogue among researchers, public health practitioners and communities at risk may provide a vital opportunity to dispel misinformation and rumors and to cultivate trust, which may facilitate HIV vaccine trial participation and uptake of future HIV vaccines.

HIV testing in an urgent-care clinic.

BACKGROUND: Early detection of HIV is increasingly important in light of advances in HIV research and treatment. Although treatment advances offer the potential to curtail HIV incidence and seroprevalence, the full benefits remain unrealised because many infected individuals remain unaware of their serostatus. An intensive observational study of HIV testing and counselling was undertaken in a large health maintenance organisation's urgent-care clinic (UCC) for non-threatening illnesses and non-traumatic injuries in order to better understand the HIV testing process in a medical setting. METHODS: Multiple data collection strategies, including observation, semi-structured interviews and document and policy analyses, were used in order to identify key factors influencing HIV testing. The study examined physicians', nurses' and physician's assistants' relationships with patients in the UCC. RESULTS: It was found that HIV testing in the UCC is highly variable because some patients are asked about their sexual risk histories and given HIV prevention education materials and others are not. Moreover, for those patients who do receive these components of testing, the content of both the risk assessments and HIV prevention counselling varies from patient to patient. Findings also highlight the problematic nature of providing HIV test results in an UCC. CONCLUSIONS: A number of implementation issues were found to be relevant to the new US Centers for Disease Control and Prevention (CDC) policy of making HIV testing a routine feature of medical care. The study results suggest the need for organisationally fine-tuned interventions designed to improve the process of testing patients for HIV in medical settings.

Adherence to antiretroviral medications in HIV/AIDS care: a narrative exploration of one woman's foray into intentional nonadherence.

Intentional nonadherence occurs when patients deliberately do not take their medications. This phenomenon has not been studied within HIV/AIDS care, a significant omission due to the difficulty of adherence to antiretroviral medications for HIV/AIDS patients and the severe risks associated with nonadherence. The purpose of this study was to explore, using HIV-positive women's own recollections collected in diary format, how and why women living with HIV/AIDS intentionally fail to adhere to their antiretroviral medications. We examined the journal entries of 20 HIV-positive women written during a 1-month period. Although three participants wrote about their intentional nonadherence, the journal entries of only one woman are presented in detail. This woman's story highlights the complex reasons for intentional nonadherence and the social/emotional ramifications of such nonadherence. Results suggest that intentional nonadherence is emotionally trying for patients and that patients' adherence decisions are continually renegotiated, underscoring the need for routine provider-patient adherence communication.

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 patient's expectations of care and the physician's 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.

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.