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Purpose of review: Aligning HIV treatment services with patient preferences can promote long-term engagement. A rising number of studies solicit such preferences using discrete choice experiments, but have not been systematically reviewed to seek generalizable insights. Using a systematic search, we identified eleven choice experiments evaluating preferences for HIV treatment services published between 2004 and 2020.
Recent findings: Across settings, the strongest preference was for nice, patient-centered providers, for which participants were willing to trade considerable amounts of time, money, and travel distance. In low- and middle-income countries, participants also preferred collecting antiretroviral therapy (ART) less frequently than 1 monthly, but showed no strong preference for 3-compared with 6-month refill frequency. Facility waiting times and travel distances were also important but were frequently outranked by stronger preferences. Health facility-based services were preferred to community- or home-based services, but this preference varied by setting. In high-income countries, the availability of unscheduled appointments was highly valued. Stigma was rarely explored and costs were a ubiquitous driver of preferences. While present improvement efforts have focused on designs to enhance access (reduced waiting time, travel distance, and ART refill frequency), few initiatives focus on the patient-provider interaction, which represents a promising critical area for inquiry and investment. If HIV programs hope to truly deliver patient-centered care, they will need to incorporate patient preferences into service delivery strategies. Discrete choice experiments can not only inform such strategies but also contribute to prioritization efforts for policy-making decisions.
Policy Points First, policymakers can create conditions that will facilitate public trust in health care organizations by making creating and enforcing health policies that make exploitative behavior costly. Second, policymakers can bolster the trustworthiness of health care markets and organizations by using their regulatory authority to address and mitigate harm from conflicts-of-interest and regulatory capture. Third, policymakers and government agencies can further safeguard the public's trust by being transparent and effective about their role in the provision of health services to the public.
Context: Trust plays a critical role in facilitating health care delivery and calls for rebuilding trust in health care are increasingly commonplace. This article serves as a primer on the trust literature for health policymakers, organizational leaders, clinicians, and researchers based on the long history of engagement with the topic among health policy and services researchers.
Methods: We conducted a synthetic review of the health services and health policy literatures on trust since 1970. We organize our findings by trustor-trustee dyads, highlighting areas of convergence, tensions and contradictions, and methodological considerations. We close by commenting on the challenges facing the study of trust in health care, the potential value in borrowing from other disciplines, and imperatives for the future.
Findings: We identified 725 articles for review. Most focused on patients' trust in clinicians (n = 499), but others explored clinicians' trust in patients (n = 11), clinicians' trust in clinicians (n = 69), and clinician/patient trust in organizations (n = 19) and systems (n = 127). Across these five subliteratures, there was lack of consensus about definitions, dimensions, and key attributes of trust. Researchers leaned heavily on cross-sectional survey designs, with limited methodological attention to the relational or contextual realities of trust. Trust has most commonly been treated as an independent variable related to attitudinal and behavioral outcomes. We suggest two challenges have limited progress for the field: (1) conceptual murkiness in terms and theories, and (2) limited observability of the phenomena. Insights from philosophy, sociology, economics, and psychology offer insights for how to advance both the theoretical and empirical study of health-related trust.
Conclusion: Conceptual clarity and methodological creativity are critical to advancing health-related trust research. Although rigorous research in this area is challenging, the essential role of trust in population health necessitates continued grappling with the topic.
Task-shifting to lay community health providers is increasingly suggested as a potential strategy to overcome the barriers to sustainable antiretroviral treatment (ART) scale-up in high-HIV-prevalence, resource-limited settings. The dearth of systematic scientific evidence on the contributory role and function of these forms of community mobilisation has rendered a formal evaluation of the published results of existing community support programmes a research priority.
We reviewed the relevant published work for the period from November 2003 to December 2011 in accordance with the guidelines for a synthetic review. ISI Web of Knowledge, Science Direct, BioMed Central, OVID Medline, PubMed, Social Services Abstracts, and Sociological Abstracts and a number of relevant websites were searched.
The reviewed literature reported an unambiguous positive impact of community support on a wide range of aspects, including access, coverage, adherence, virological and immunological outcomes, patient retention and survival. Looking at the mechanisms through which community support can impact ART programmes, the review indicates that community support initiatives are a promising strategy to address five often cited challenges to ART scale-up, namely (1) the lack of integration of ART services into the general health system; (2) the growing need for comprehensive care, (3) patient empowerment, (4) and defaulter tracing; and (5) the crippling shortage in human resources for health. The literature indicates that by linking HIV/AIDS-care to other primary health care programmes, by providing psychosocial care in addition to the technical-medical care from nurses and doctors, by empowering patients towards self-management and by tracing defaulters, well-organised community support initiatives are a vital part of any sustainable public-sector ART programme.
The review demonstrates that community support initiatives are a potentially effective strategy to address the growing shortage of health workers, and to broaden care to accommodate the needs associated with chronic HIV/AIDS. The existing evidence suggests that community support programmes, although not necessarily cheap or easy, remain a good investment to improve coverage of communities with much needed health services, such as ART. For this reason, health policy makers, managers, and providers must acknowledge and strengthen the role of community support in the fight against HIV/AIDS.
Closely related to the above, recent studies have indicated that, especially in resource-limited settings, PLWHA on ART should be empowered towards self-management of their chronic illness [22, 23]. In practice, this patient empowerment entails a wide range of educating and counselling activities that are aimed at increasing HIV/AIDS and ART literacy and chronic disease management skills. However, recent studies have suggested that overburdened health staff often have difficulty in conveying the practical skills required for practicing a more patient-centred and less technical model of patient care that is aimed at empowering PLWHA for informed day-to-day decision making [22].
When comprehensive care and patient self-management fail, patients discontinue treatment and develop rapid viral rebound and loss of CD4 T lymphocytes [24], which significantly increases the risk of drug resistance and treatment failure. In addition, patients with clinical AIDS who discontinue ART will probably die within a relatively short time [24]. In sub-Saharan Africa, however, resources are scarce and the health systems overburdened, which leaves little time and resources to trace defaulting patients.
Against the daunting challenge to move simultaneously beyond a single-purpose, vertical programme towards an integrated PHC approach, provide comprehensive HIV/AIDS care, empower patients towards self-management and trace defaulting patients, one could well ask: who will do the job? [25] The inadequate supply and poor retention of skilled health professionals is deplored as the single most serious obstacle for implementing the national treatment plan in sub-Saharan Africa [26]. Thus far, the largely doctor- and nurse-driven implementation of ART has become increasingly unable to bridge the gap between the ART clinics and the vast numbers of patients in need of treatment.
To assess the potential contribution of community support structures in scaling up ART, an extensive literature review was performed. As a result of the limited number of studies that have assessed the potential contribution of community support to ART programme outcomes, we decided to expand their geographical scope to all resource-limited countries.
As the selected topic is innovative and the number of available scientific studies assessing the contribution of community support to ART programmes is thus rather limited, we opted to include studies applying a wide range of research designs and community support typologies.
We included all quantitative and qualitative (English-language) research papers on the selected topic, as different perspectives on a similar topic are often complementary. We included randomized controlled trials, studies utilizing a comparison group (including pre-test, post-test design), retrospective cohort studies, descriptive studies, and qualitative studies.
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