Medication adherence practices of HIV/AIDS case managers: a statewide survey in North Carolina

The primary objective of this study was to examine the adherence-related practices and attitudes of HIV/AIDS case managers in North Carolina. All North Carolina HIV/AIDS case managers (n = 111) employed by agencies that were state certified to provide HIV case management were sent an adherence counseling survey. Negative binomial regression was used to examine the relationship of case managers' characteristics and attitudes with their medication adherence counseling practices. Of the 94 HIV/AIDS case managers who responded to the survey, the majority (65%) reported discussing medications with almost every client. The adherence-related behaviors that case managers most frequently provided were related to monitoring medication usage rather than providing medication instruction. Most case managers believed that medication adherence counseling is part of their role (77%); however, a substantial minority, (36%) did not believe that their adherence counseling skills were adequate. Multivariate analysis revealed that case managers who provided more adherence counseling services reported greater confidence in their adherence counseling skills, believed that adherence counseling is a HIV/AIDS case management role, and had a higher proportion of substance-abusing clients in their caseload. The adherence counseling activities of HIV/AIDS case managers can potentially supplement the counseling provided by other health professionals and promote greater adherence to medications. However, variability in perceived skills and adherence-related activities suggests that the role of case managers in medication adherence counseling needs to be better defined and appropriate training provided to meet the expectations of this role.     

Barriers to accessing HIV/AIDS care in North Carolina: rural and urban differences

Many HIV-positive individuals face multiple barriers to care and therefore frequently experience unmet medical and support services needs. Rural areas often lack the infrastructure to support the delivery of comprehensive HIV services; however, few studies have examined service barriers faced by rural residents with HIV/AIDS, particularly in the South where two-thirds of people living with HIV/AIDS in rural areas reside. We surveyed North Carolina HIV/AIDS case managers (N = 111) employed at state-certified agencies regarding barriers to medical and support services that influence medication adherence for their rural and urban-living clients. For each of the seven barriers assessed (long travel for care, HIV-related stigma, and a lack of transportation; HIV-trained medical practitioners; housing; mental health services and substance abuse treatment), a substantial proportion of case managers (29-67%) reported it was a 'major problem'. For five of the seven barriers, rural case managers were significantly more likely to identify the barrier as a 'major problem'. Multivariate analysis revealed that rural case managers and case managers with more female clients reported a greater number of barriers. Because unmet medical and support service needs may result in poorer outcomes for HIV-positive individuals, barriers to these services must be identified and addressed, particularly in rural areas which may be highly underserved.     

HIV prevention case management in San Francisco: barriers to successful implementation

Prevention case management (PCM) is the most labor-intensive HIV prevention intervention for persons at risk for acquiring or transmitting HIV. However, it has not been thoroughly evaluated. We abstracted client charts (n = 290) from 12 San Francisco PCM programs and interviewed current and former program directors (n=16), case managers (n = 17) and contract managers (n = 4) regarding client characteristics, services delivered, barriers to care, cost and organizational structure, policies and procedures. Most agencies lacked protocols and data collection forms, had high staff turnover, inadequate staff training and supervision, experienced difficulty recruiting and retaining clients and could not implement PCM guidelines. Half the clients lacked behavioral risk assessment, 39% were low or no risk, a third received HIV prevention education and a third received referrals. Including time spent directly with clients and working on their behalf, PCM cost almost four-fold more per client contact than the next most costly individual level prevention intervention. Local PCM guidelines, reimbursement ties to providing and documenting services and increased collaboration between the health department and agencies has greatly improved the situation. Outcome evaluations and cost-effectiveness assessments comparing PCM to less costly prevention interventions are needed.     

Improving HIV/AIDS care through treatment advocacy: going beyond client education to empowerment by facilitating client-provider relationships

Treatment advocacy (TA) programs have been implemented by AIDS service organizations (ASOs) and primary care clinics across the USA to help engage clients with HIV into care and support their adherence to antiretroviral therapy (ART). TA aims to empower people with HIV through education and client-centered counseling regarding HIV, ART, and other health issues; advocate on behalf of patients with providers; and make referrals to healthcare services and clinical trials. However, relatively little is known about the impact TA has on clients' healthcare experiences. The present study's objectives included exploring how TA services help clients engage in HIV care, initiate ART, and adhere to HIV medications. We conducted 25 semi-structured qualitative open-ended interviews with clients living with HIV/AIDS recruited from AIDS Project Los Angeles (APLA); four HIV medical providers; and two TA staff at APLA. Of the 25 clients interviewed, 92% were male and 8% were female. The average age was 43 years (SD=9). About 60% were African-American, 20% were White, 12% were other or multiracial, 4% were Latino, and 4% were Asian/Pacific Islander. Five interconnected themes consistently emerged across clients, TAs, and providers. TAs helped clients understand treatments and supported adherence within a holistic context. Further, TAs acted as a bridge to providers and helped clients build self-advocacy skills. Our data show that TA services go beyond traditional areas of education and treatment adherence. TA services within an ASO also provide a safe place to discuss initial HIV diagnoses and other health issues in a more comprehensive manner. TA services complemented medical and other social services by preparing clients with HIV to be better consumers of healthcare services. Future quantitative research examining the effectiveness of TA on improving clients' engagement in care and adherence is a critical next step.     

Adherence counseling practices of generalist and specialist physicians caring for people living with HIV/AIDS in North Carolina

CONTEXT: National guidelines recommend that practitioners assess and reinforce patient adherence when prescribing antiretroviral (ART) medications, but the extent to which physicians do this routinely is unknown. OBJECTIVE: To assess the adherence counseling practices of physicians caring for patients with HIV/AIDS in North Carolina and to determine characteristics associated with providing routine adherence counseling. DESIGN: A statewide self-administered survey. SETTING AND PARTICIPANTS: All physicians in North Carolina who prescribed a protease inhibitor (PI) during 1999. Among the 589 surveys sent, 369 were returned for a response rate of 63%. The 190 respondents who reported prescribing a PI in the last year comprised the study sample. MAIN OUTCOME MEASURES: Physicians reported how often they carried out each of 16 adherence counseling behaviors as well as demographics, practice characteristics, and attitudes. RESULTS: On average, physicians reported spending 13 minutes counseling patients when starting a new 3-drug ART regimen. The vast majority performed basic but not more extensive adherence counseling; half reported carrying out 7 or fewer of 16 adherence counseling behaviors "most" or "all of the time." Physicians who reported conducting more adherence counseling were more likely to be infectious disease specialists, care for more HIV-positive patients, have more time allocated for an HIV visit, and to perceive that they had enough time, reimbursement, skill, and office space to counsel. After also controlling for the amount of reimbursement and availability of space for counseling, physicians who were significantly more likely to perform a greater number of adherence counseling practices were those who 1). cared for a greater number of HIV/AIDS patients; 2). had more time allocated for an HIV physical; 3). felt more adequately skilled; and 4). had more positive attitudes toward ART. CONCLUSIONS: This first investigation of adherence counseling practices in HIV/AIDS suggests that physicians caring for patients with HIV/AIDS need more training and time allocated to provide antiretroviral adherence counseling services.     

Psychiatric and social barriers to HIV medication adherence in a triply diagnosed methadone population

Although antiretrovirals can prolong life, medication adherence also poses a constant challenge for HIV-infected individuals because the success of antiretroviral regimens demands nearly perfect adherence to medications. This paper describes the psychiatric and social barriers to adherence in a convenience sample of HIV-positive clients in methadone treatment in the Bronx, New York. The study sample was part of a national study of HIV treatment adherence and health care utilization among triply diagnosed populations, the HIV/AIDS Treatment Adherence Health Outcomes and Cost Study. The triply diagnosed study sample is defined here as HIV-infected individuals who screened into the study with at least one psychiatric diagnosis in addition to opioid dependence on agonist therapy (methadone treatment) and at least one substance use diagnosis. Interviewers utilized modified versions of the Structured Clinical Interview for DSM-IV Disorders (SCID-I), the Structured Clinical Interview for DSM-IV Axis II Personality Disorders (SCID-II), and the Addiction Severity Index (ASI-Lite), among a battery of Cost Study instruments. Results showed that within this sample, borderline personality disorder was significantly associated with nonadherence to HIV medications. A related finding showed a significant relationship between serious social/family problems and nonadherence. These findings build on previous research on the impact of psychiatric illness on HIV medication adherence and suggest that psychiatric assessment and treatment options be linked to adherence interventions.     

Vets,denialists and rememberers: social typologies of patient adherence and non-adherence to HAART from the perspective of HIV care providers

For many people living with HIV/AIDS taking highly active antiretroviral therapy (HAART) is difficult due to various individual and social factors, including the side effects of these medications, HIV/AIDS stigma and poor patient–provider relationships. Most studies that examine barriers to and facilitators of adherence to HAART have been conducted with people on these medications, which is critical to improving adherence among various HIV-affected groups. Less attention has been paid to the experiences of HIV care providers, which is an important gap in the literature considering the key role they play in the delivery of HAART and the management of patient treatment plans. This paper presents findings from a qualitative pilot study that explored how HIV care providers assess adherence and non-adherence to HAART among their HIV-positive patients in Vancouver, British Columbia. Drawing upon individual interviews conducted with HIV physicians (n = 3), social service providers (n = 3) and pharmacists (n = 2), this discussion focuses on the social typologies our participants use to assess patient success and failure related to adherence. Eleven unique categories are featured and the diversity within and across these categories illustrate a broad spectrum of adherence-related behaviours among patients and the social meanings providers attribute to these behaviours. As one of the first explorations of the social typologies used by HIV care providers to assess patient performance on HAART, these data contribute valuable insights into the experiences of providers within the context of adherence-related care delivery.     

Training Substance Abuse Counselors About HIV Medication Adherence

Abstract

High levels of medication adherence are crucial to the success of HIV treatment. Consequently, substance abuse counselors (SACs), social service and other care providers can best support their HIV positive clients when they understand adherence and related interventions. This paper describes a training program that was designed to increase counselor knowledge of HIV medications, adherence strategies and enhance counseling skills specific to HIV adherence. For substance abuse counselors the training needs included: better understanding of medication interactions, relapse, recovery, and interdisciplinary communication. Thirty-six SACs from three agencies completed the 11/2-day training, which included lecture discussions, case discussion and interactive client case simulations. Success in accomplishing training objectives was evaluated at three points: preintervention training, post-intervention, and six month follow-up to determine changes in participants' knowledge, attitudes and behaviors related to adherence counseling. Three case scenarios measuring counselor comfort levels indicated SACs felt significantly more comfortable discussing relapse and medication issues with their HIV affected clients than they would in discussing medication issues with the client's physician. However, they felt slightly more comfortable about physician discussions after training. Open-ended comments by SACs at six-month follow-up provided insights into recovery issues their clients faced. The findings suggest ways medication adherence could fit the reality of serving clients with co-occurring HIV and substance use to better meet their health and support needs.     

Adherence: working with homeless populations

Before establishing medical care for homeless people with HIV, fundamental needs must be met, along with stabilizing other needs such as mental health or substance abuse treatment. Case managers can help provide the foundation for basic needs such as housing and food, then assist the homeless in obtaining regular medical care. Case managers must monitor and encourage clients' routine participation in health care visits and provide the client with information about HIV on an understandable level. Counselors should be prepared to answer questions and be supportive of clients' emotions. Familiarity with a client's routine is essential for promoting proper storage of medications and for adherence in drug administration. Counselors can facilitate adherence by helping clients practice taking medications and by advising them of how to manage potential side effects.     

“She is my teacher and if it was not for her I would be dead”: Exploration of rural South African community health workers' information,education and communication activities

Community health workers (CHWs) are important resources in health systems affected by the HIV/AIDS pandemic. International guidelines on task-shifting recommend that CHWs can provide diverse HIV services, ranging from HIV prevention to counselling patients for lifelong antiretroviral therapy. There is, however, little evidence on the experiences with CHW delivery of these services in Africa. This qualitative study included 102 interviews that explored experiences with information, education and communication (IEC) activities provided by CHWs within rural South Africa. Semi-structured interviews were conducted with CHWs (n = 17), their clients (n = 33) and the primary caregivers of these clients (n = 30), allowing for data source triangulation. Twenty-two follow-up interviews explored emergent themes from preliminary interviews. Despite limited formal education and training, CHWs in this study were significant providers of IEC, including provision of generic health talks and HIV-specific information and facilitation to support clients’ entry and maintenance in the formal health system. They often incorporated local knowledge and understanding of illness in their communication. CHWs in this study were able to bridge the lifeworlds of the community and the formal services to expedite access and adherence to local clinics and other services. As mediators between the two worlds, CHWs reinterpreted health information to make it comprehensible in their communities. With growing formalisation of CHW programmes in South Africa and elsewhere, CHWs’ important role in health service access, health promotion and health maintenance must be recognised and supported in order to maximise impact.     

Engaging HIV-positive clients in care: acceptability and mechanisms of action of a peer navigation program in South Africa

Antiretroviral therapy (ART) could curtail the HIV epidemic, but its impact is diminished by low uptake. We developed a peer navigation program to enhance engagement in HIV care, ART adherence, and behavioral prevention. In preparation for a randomized controlled trial, the program was piloted over four months at two primary health clinics in South Africa’s North West Province. Newly diagnosed, HIV-positive clients met regularly with navigators to address barriers to care, adherence, and prevention. To assess program acceptability and feasibility and characterize the mechanisms of action, we surveyed 25 clients who completed navigation services and conducted interviews with 10 clients, four navigators, and five clinic providers. Clients expressed near universal approval for the program and were satisfied with the frequency of contact with navigators. HIV stigma emerged as a primary driver of barriers to care. Navigators helped clients overcome feelings of shame through education and by modeling how to live successfully with HIV. They addressed discrimination fears by helping clients disclose to trusted individuals. These actions, in turn, facilitated clients’ care engagement, ART adherence, and HIV prevention efforts. The findings suggest peer navigation is a feasible approach with potential to maximize the impact of ART-based HIV treatment and prevention strategies.     

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.     

Social relationships, stigma and adherence to antiretroviral therapy for HIV/AIDS

Research on adherence to combination antiretroviral therapy has up to now focused largely upon problems of definition and measurement, and on the identification of barriers and supports. This paper examines the intersection between taking HAART and building a life with HIV/AIDS. Data consist of 214 qualitative interviews with 52 HIV-positive, active illegal drug users. A interpretive analysis drawing upon stigma and fear of disclosure as analytical constructs was applied to explain working tensions between efforts to develop social relationships on the one hand, and attempts to safeguard health through adherence on the other. The analysis specifies a mechanism through which stigma as a social process results in marginalization and exclusion. The hierarchical organization of multiple stigma is also noted. Loneliness and the desire for relatedness is intensified by drug use. Results suggest that persons with HIV/AIDS will not consistently subordinate other interests to prioritize adherence. Interventions aimed at supporting long-term adherence must address experienced conflicts between 'health' and 'life'.     

Barriers to enrollment in drug abuse treatment and suggestions for reducing them: opinions of drug injecting street outreach clients and other system stakeholders

Alcohol and other drug abuse (AOD) treatment is a major means of HIV/AIDS prevention, yet clients of street outreach programs (SOP) who are injection drug users (IDU), and outreach workers and staff as well, report various obstacles to enrolling clients in AOD programs. This study assessed the barriers to AOD enrollment facing high risk street outreach clients and obtained suggestions for reducing them. Data were obtained from semistructured field interviews with: 1) IDU outreach clients (N = 144) of the six SOPs in New York City (NYC) and northern suburbs supported by the Office of Alcoholism and Substance Abuse Services (OASAS), the single state agency in New York State for AOD prevention and treatment, 2) outreach workers and staff of the six SOPs (N = 55), 3) staff of detox and AOD treatment programs in major modalities treating IDUs (N = 71), and 4) officials and administrators (N = 11) in OASAS, the AIDS Institute of the Department of Health (addresses all aspects of the HIV/AIDS epidemic in New York State), and the agency for public assistance in New York City, the Human Resources Administration (HRA). Principal barriers for street outreach clients included personal-family issues, lack of insurance/Medicaid, ignorance, suspicion, and/or aversion to AOD treatment (methadone maintenance especially), "hassles" with Medicaid, lack of personal ID, lack of "slots," limited access to intake, homelessness, childcare-child custody issues. Further, about 18% had no desire for AOD services, reported no barriers, or were too enmeshed in addiction to enroll. Outreach staff cited prospective client's lack of ID and lack of Medicaid, lack of "slots," and stakeholder agency bureaucracy. Treatment staff cited lack of client readiness, "hassles" posed by welfare reform, AOD programs' own "red tape," waiting lists, and near exclusionary preference for the Medicaid-eligible. Finally, agency managers cited client factors, inadequate funding and lack of appropriate programs, treatment program requirements, and societal stigmatization of addicts. Proposed remedies included dropping ID and insurance requirements for admission, major increases in resources, funding the transporting of outreach client treatment candidates to AOD services sites, education and training initiatives, increased inter-agency cooperation, and the need for stakeholder agencies, OASAS especially, to more effectively integrate abstinence-oriented AOD services with harm reduction and the public health aspects of AOD problems.     

Facilitators and barriers to treatment adherence within PMTCT programs in Malawi

In Malawi, an innovative prevention of mother-to-child transmission (PMTCT) of HIV program, Option B+, has greatly expanded access to antiretroviral treatment at no cost to women and their exposed infants. However, many women continue to experience social, cultural, and structural barriers impeding their ability to consistently access medical treatment. Understanding these women's perspectives may make programs more responsive to patients’ needs. This qualitative study sought to explore factors influencing women's adherence within PMTCT programs in southern Malawi. Participants were current PMTCT patients (the first cohort following national implementation of Option B+), healthcare providers, community leaders, and patients who had dropped out of the program (“defaulters”). Qualitative interviews and focus groups were conducted to investigate barriers and facilitators to continued participation within PMTCT programs. Data were analyzed using content analysis. Barriers identified included fears of HIV disclosure to husbands, community-based HIV/AIDS stigma, and poor interactions with some health workers. Facilitators included the improved survival of PMTCT patients in recent years and the desire to remain healthy to care for one's children. This research highlights important sociocultural factors affecting adherence within HIV/AIDS treatment programs in Malawi. Recommendations to improve access to medical care for PMTCT patients include integrated services to increase attention to confidentiality and minimize stigma, shared HIV testing and counseling for couples to minimize conflict in gender-unequal relationships, and peer-led support groups to provide social support from other women with the shared experience of an HIV-positive serostatus.     

Treatment Adherence Among Clients in AIDS Service Organizations

ABSTRACT

For social workers in AIDS service organizations (ASOs), helping clients adhere to antiretroviral therapies is a priority, since non-adherence can significantly reduce drug efficacy and lead to drug resistance. This preliminary study examined treatment adherence among HIV-infected individuals receiving services from four ASOs in New York City. Adherence was suboptimal; more than one half of the sample had not taken their medications as prescribed within the past month and 20% had missed taking one or more pills the previous day. Clients who reported greater adherence considered themselves to be in good emotional health, had not used illegal drugs recently, and believed that their ASO was very helpful with regard to treatment adherence. Regular assessment of clients' treatment adherence is essential and social workers should continue to be involved with other health professionals in designing, implementing and evaluating interventions for promoting adherence among clients in ASOs.     

Economic stress and HIV-associated health care utilization in a rural region of China: a qualitative study

China is experiencing an emerging HIV epidemic, primarily affecting the rural poor. For this group, the costs of staying healthy are often beyond their means. A qualitative study was undertaken with 20 HIV-positive people living in a rural area in Anhui, eastern China, 20 of their family members, 20 health care providers, and 20 uninfected villagers. In this area, the majority of HIV-positive people were infected through contaminated commercial plasma/blood donation procedures. In-depth interviews were conducted with participants to identify the barriers and enablers to accessing health care services for HIV. A major concern for affected villagers was the unaffordable costs of health care, which leads them to delay seeking services until symptoms are severe. Use of the health care system was also influenced by the availability of subsidized medications, distance to the health care centre and quality of available services. In contrast, participants were very positive about antiretroviral treatment services, which are now free. In the study area, access to health care is heavily subsidized, yet many still found these services unaffordable. More equitable and affordable services will be needed if China is to control its HIV epidemic.     

Barriers to and facilitators of HIV-positive patients' adherence to antiretroviral treatment regimens

HIV-positive patients must strictly adhere to antiretroviral regimens for the medications to work properly. Little, however, is known about the obstacles that patients face in adhering to the regimens or what, if anything, helps patients to adhere. The goals of the project were to describe, from HIV-positive patients' own perspectives, the barriers they face in adhering to antiretroviral regimens and the strategies they use to maximize their adherence. Five main barriers (forgetfulness, social/physical environment, complexity of the regimens, medication side effects, and inadequate patient knowledge) to adherence and six main facilitators (mechanical devices, "making a commitment," "routinizing," health beliefs, social support, and professional support) emerged from the data. Patients may overcome some of these barriers by receiving better health education about the need for adherence, professional and lay support for their efforts, and mechanical devices such as alarm clocks and medi-sets. Other barriers, however, such as the complexity of the medications, highlight the need for simplified antiretroviral regimens.