BackgroundIn public health HIV treatment programs in Africa, long-term retention remains a challenge. A number of improvement strategies exist (e.g., bring services closer to home, reduce visit frequency, expand hours of clinic operation, improve provider attitude), but implementers lack data about which to prioritize when resource constraints preclude implementing all. We used a discrete choice experiment (DCE) to quantify preferences for a number of potential clinic improvements to enhance retention.Methods and findingsWe sought a random sample of HIV patients who were lost to follow-up (defined as >90 days late for their last scheduled appointment) from treatment facilities in Lusaka Province, Zambia. Among those contacted, we asked patients to choose between 2 hypothetical clinics in which the following 5 attributes of those facilities were varied: waiting time at the clinic (1, 3, or 5 hours), distance from residence to clinic (5, 10, or 20 km), ART supply given at each refill (1, 3, or 5 months), hours of operation (morning only, morning and afternoon, or morning and Saturday), and staff attitude (“rude” or “nice”). We used mixed-effects logistic regression to estimate relative utility (i.e., preference) for each attribute level. We calculated how much additional waiting time or travel distance patients were willing to accept in order to obtain other desired features of care. Between December 9, 2015 and May 31, 2016, we offered the survey to 385 patients, and 280 participated (average age 35; 60% female). Patients exhibited a strong preference for nice as opposed to rude providers (relative utility of 2.66; 95% CI 1.9–3.42; p < 0.001). In a standard willingness to wait or willingness to travel analysis, patients were willing to wait 19 hours more or travel 45 km farther to see nice rather than rude providers. An alternative analysis, in which trade-offs were constrained to values actually posed to patients in the experiment, suggested that patients were willing to accept a facility located 10 km from home (as opposed to 5) that required 5 hours of waiting per visit (as opposed to 1 hour) and that dispensed 3 months of medications (instead of 5) in order to access nice (as opposed to rude) providers. This study was limited by the fact that attributes included in the experiment may not have captured additional important determinants of preference.ConclusionsIn this study, patients were willing to expend considerable time and effort as well as accept substantial inconvenience in order to access providers with a nice attitude. In addition to service delivery redesign (e.g., differentiated service delivery models), current improvement strategies should also prioritize improving provider attitude and promoting patient centeredness—an area of limited policy attention to date.
IntroductionDespite access to free antiretroviral therapy (ART), many HIV-positive Zambians disengage from HIV care. We sought to understand how Zambian health system ‘hardware’ (tangible components) and ‘software’ (work practices and behaviour) influenced decisions to disengage from care among ‘lost-to-follow-up’ patients traced by a larger study on their current health status.MethodsWe purposively selected 12 facilities, from 4 provinces. Indepth interviews were conducted with 69 patients across four categories: engaged in HIV care, disengaged from care, transferred to another facility and next of kin if deceased. We also conducted 24 focus group discussions with 158 lay and professional healthcare workers (HCWs). These data were triangulated against two consecutive days of observation conducted in each facility. We conducted iterative multilevel analysis using inductive and deductive reasoning.ResultsHealth system ‘hardware’ factors influencing patients’ disengagement included inadequate infrastructure to protect privacy; distance to health facilities which costs patients time and money; and chronic understaffing which increased wait times. Health system ‘software’ factors related to HCWs’ work practices and clinical decisions, including delayed opening times, file mismanagement, drug rationing and inflexibility in visit schedules, increased wait times, number of clinic visits, and frustrated access to care. While patients considered HCWs as ‘mentors’ and trusted sources of information, many also described them as rude, tardy, careless with details and confidentiality, and favouring relatives. Nonetheless, unlike previously reported, many patients preferred ART over alternative treatment (eg, traditional medicine) for its perceived efficacy, cost-free availability and accompanying clinical monitoring.ConclusionFindings demonstrate the dynamic effect of health system ‘hardware’ and ‘software’ factors on decisions to disengage. Our findings suggest a need for improved: physical resourcing and structuring of HIV services, preservice and inservice HCWs and management training and mentorship programmes to encourage HCWs to provide ‘patient-centered’ care and exercise ‘flexibility’ to meet patients’ varying needs and circumstances.
Highlights Participants generally expressed acceptance for vaccines but described hesitant individuals. Alcohol, prayer and traditional remedies were alternatives reported in the community. Adverse effects combined with limited information were likely fostering vaccine hesitancy. Limited understanding and misconceptions about vaccines were common. Discussants supported delivery strategies that improved education and access.
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In-person interactions have traditionally been the gold standard for qualitative data collection. The COVID-19 pandemic required researchers to consider if remote data collection can meet research objectives, while retaining the same level of data quality and participant protections. We use four case studies from the Philippines, Zambia, India and Uganda to assess the challenges and opportunities of remote data collection during COVID-19. We present lessons learned that may inform practice in similar settings, as well as reflections for the field of qualitative inquiry in the post-COVID-19 era. Key challenges and strategies to overcome them included the need for adapted researcher training in the use of technologies and consent procedures, preparation for abbreviated interviews due to connectivity concerns, and the adoption of regular researcher debriefings. Participant outreach to allay suspicions ranged from communicating study information through multiple channels to highlighting associations with local institutions to boost credibility. Interviews were largely successful, and contained a meaningful level of depth, nuance and conviction that allowed teams to meet study objectives. Rapport still benefitted from conventional interviewer skills, including attentiveness and fluency with interview guides. While differently abled populations may encounter different barriers, the included case studies, which varied in geography and aims, all experienced more rapid recruitment and robust enrollment. Reduced in-person travel lowered interview costs and increased participation among groups who may not have otherwise attended. In our view, remote data collection is not a replacement for in-person endeavours, but a highly beneficial complement. It may increase accessibility and equity in participant contributions and lower costs, while maintaining rich data collection in multiple study target populations and settings.
Background Current models of HIV service delivery, with frequent facility visits, have led to facility congestion, patient and healthcare provider dissatisfaction, and suboptimal quality of services and retention in care. The Zambian urban adherence club (AC) is a health service innovation designed to improve on-time drug pickup and retention in HIV care through off-hours facility access and pharmacist-led group drug distribution. Similar models of differentiated service delivery (DSD) have shown promise in South Africa, but observational analyses of these models are prone to bias and confounding. We sought to evaluate the effectiveness and implementation of ACs in Zambia using a more rigorous study design. Methods and findings Using a matched-pair cluster randomized study design (ClinicalTrials.gov: NCT02776254), 10 clinics were randomized to intervention (5 clinics) or control (5 clinics). At each clinic, between May 19 and October 27, 2016, a systematic random sample was assessed for eligibility (HIV+, age � 14 years, on ART >6 months, not acutely ill, CD4 count not <200 cells/ mm 3) and willingness to participate in an AC. Clinical and antiretroviral drug pickup data were obtained through the existing electronic medical record. AC meeting attendance data were collected at intervention facilities prospectively through October 28, 2017. The primary outcome was time to first late drug pickup (>7 days late). Intervention effect was estimated
BackgroundFailure to keep people living with HIV engaged in life-long care and treatment has serious implications for individual and population-level health. Nested within a four-province study of HIV care and treatment outcomes, we explored the dynamic role of social and service-related factors influencing retention in HIV care in Zambia.MethodsFrom a stratified random sample of 31 facilities, eight clinics were selected, one urban and one rural from each province. Across these sites we conducted a total of 69 in-depth interviews, including with patients (including pregnant women) engaged in-care (n = 28), disengaged from care (n = 15), engaged facility transferee (n = 12), and friends/family of deceased patients (n = 14). At the same sites we conducted 24 focus group discussions with a total of 192 lay and professional healthcare workers (HCWs). Two-day observations in each of the eight facilities helped triangulate data on operational context, provider relations and patient-provider interactions. We ordered and analysed data using an adapted version of Ewart’s Social Action Theory.ResultsThree overarching findings emerged. First, the experience of living with HIV and engaging in HIV care in Zambia is a social, not individual experience, influenced by social and gendered norms and life goals including financial stability, raising family and living stigma-free. Second, patients and their networks act collectively to negotiate and navigate HIV care. Anticipated responses from social network influenced patients’ willingness to engage in care, while emotional and material support from those networks influenced individuals’ capacity to remain in HIV care. Lastly, health system factors were most influential where they facilitated or undermined peoples’ collective approach to health service use. Participants living with HIV reported facilitation of both their initial and continued engagement in care where services involved social networks, such as during couples testing and community outreach. Conversely, service features that were poorly aligned with respondents’ social reality (e.g. workplace obligations) hindered long-term engagement.ConclusionsThis study moves beyond listing barriers or socio-ecological groupings, to explain how social and health systems interact to produce HIV care outcomes. Our findings challenge the implicit assumption of individual agency underpinning many retention studies to highlight the social nature of illness and healthcare utilization for HIV in Zambia. This understanding of collective action for accessing and remaining in HIV care should underpin future efforts to revise and reform HIV and potentially other chronic service models and systems.
Background: Evidence-based HIV interventions often fail to reach anticipated impact due to insufficient utilization in realworld health systems. Human-centered design (HCD) represents a novel approach in tailoring innovations to fit end-users, narrowing the gap between efficacious interventions and impact at scale. Methods:We combined a narrative literature review of HCD in HIV programs with our experience using HCD to redesign an intervention promoting patient-centered care (PCC) practices among health care workers (HCW) in Zambia. We summarize the use and results of HCD in the global HIV response and share case study insights to advance conceptualization of HCD applications. Results:The literature review identified 13 articles (representing 7 studies) on the use of HCD in HIV. All studies featured HCD hallmarks including empathy development, user-driven inquiry, ideation, and iterative refinement. HCD was applied to mHealth design, a management intervention and pre-exposure prophylaxis delivery. Our HCD application addressed a behavioral service delivery target: changing HCW patient-centered beliefs, attitudes, and practices. Through in-depth developer-user interaction, our HCD approach revealed specific HCW support for and resistance to PCC, suggesting intervention revisions to improve feasibility and acceptability and PCC considerations that could inform implementation in transferable settings. Conclusions:As both a research and implementation tool, HCD has potential to improve effective implementation of the HIV response, particularly for product development; new intervention introduction; and complex system interventions. Further research on HCD application strengths and limitations is needed. Those promoting PCC may improve implementation success by seeking out resonance and anticipating the challenges our HCD process identified.
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