Patient-provider experiences with chronic non-communicable disease care during COVID-19 lockdowns in rural Uganda: A qualitative analysis.

Non-communicable diseases (NCDs) are a growing health burden in Sub-Saharan Africa and especially Uganda, where they account for over one third of all deaths. During the COVID-19 pandemic, public health control measures such as societal "lockdowns" had a significant impact on longitudinal NCD care though no studies have looked at the lived experience around NCD care during the pandemic. Our objective was to understand the experience of NCD care for both patients and providers in southwestern Uganda during the COVID-19 pandemic. We conducted in-depth, in-person qualitative interviews with 20 patients living with hypertension, diabetes, and/or cardiac disease purposefully selected from the outpatient clinics at Mbarara Regional Referral Hospital and 11 healthcare providers from public health facilities in Mbarara, southwestern Uganda. We analyzed transcripts according to conventional content analysis. We identified four major themes that emerged from the interviews; (1) difficulty accessing medication; (2) food insecurity; (3) barriers to the delivery of NCD clinical care and (4) alternative forms of care. Pre-existing challenges with NCD care were exacerbated during COVID-19 lockdown periods and care was severely disrupted, leading to worsened patient health and even death. The barriers to care were exacerbations of underlying systemic problems with NCD care delivery that require targeted interventions. Future work should leverage digital health interventions, de-centralizing NCD care, improving follow-up, providing social supports to NCD patients, and rectifying supply chain issues.

Adaption and pilot testing of a lay HIV supporter program for traditional healers: a mixed methods study in rural Uganda.

BACKGROUND: Half of people living with HIV (PLWH) in sub-Saharan Africa default from care within two years. In Uganda, and across sub-Saharan Africa, traditional healers (TH) are ubiquitous and often serve as the first line of health care. We hypothesized that with lay support training, TH could support relinkage to HIV care and ART adherence among rural Ugandan PLWH who have defaulted from HIV care. METHODS: Following the ADAPT-ITT framework, we adapted an evidence-based layperson HIV support program from South Africa for delivery by Ugandan TH. The ADAPT-ITT framework consists of (1) Assessment of needs; (2) Deciding which evidence-based interventions to adapt; (3) Adaptation of interventions; (4) Production of drafted adapted interventions; (5) Topical expert feedback; (6) Integration of expert feedback; (7) Training personnel; and (8) Testing the adapted intervention. The Testing phase was completed via a pilot mixed methods prospective cohort study. The study population included 12 TH practicing in Mbarara Township and 20 adult PLWH with suboptimal ART adherence (CASE adherence index score < 10) who received care from a participating TH and who resided in Mbarara Township. Primary outcome was re-linkage to HIV care within 14 days. Secondary outcomes were ART re-initiation, ART adherence, retention in care after 9 months, and implementation measures. Qualitative interviews were conducted with all participants. RESULTS: Data from the Assessment phase indicated that logistical challenges played an important role in disengagement from care among PLWH who receive care from TH, notably geographical distance to clinics and transportation costs. Additionally, HIV-related stigma and lack of social support were identified as barriers to entering and remaining in HIV care. Two core elements of the intervention were identified during the Production phase: (1) TH facilitating rapid re-linkage to HIV care and (2) TH provision of psychosocial support. In the pilot study phase, baseline median CASE adherence score was 3; only 5% of PLWH were adherent to ART via 4-day recall. The TH-delivered support achieved 100% linkage and ART initiation within 14 days, 95% ART adherence, and 100% of PLWH were retained in HIV care after 9 months. CONCLUSIONS: The ADAPT-ITT framework successfully guided the adaption of a community health worker-delivered intervention for delivery by TH. TH successfully facilitated re-linkage to HIV care, support ART adherence, and retention in care for PLWH when trained as part of a lay support person program. Future studies are needed to evaluate scale-up and long-term impact.

Challenges and Fears of Adolescents and Young Adults Living with HIV Facing Transition to Adult HIV Care.

Adolescents and young adults living with perinatally-acquired HIV (AYLPHIV) have poor outcomes along each step of the HIV care continuum due to challenges in seeking care and advocating for themselves. The transition from paediatric to adult HIV care is a particularly high-risk period for AYLPHIV in rural Uganda. We conducted in-depth interviews with AYLPHIV (n = 30), caregivers (n = 10), and healthcare providers (n = 10) to understand challenges facing AYLPHIV during the transition from paediatric to adult HIV care. Themes were identified by thematic content analysis. Transition-related challenges and fears included difficulty navigating the adult HIV clinic; loss of informational support; long wait times at the adult HIV clinic; lack of privacy, and fear of HIV status disclosure and stigma; and loss of support from caregivers, and health care providers. Before transitioning to adult HIV care, AYLPHIV should be adequately prepared and given appropriate information to help them navigate adult HIV care.

Perspectives About Transition Readiness Among Adolescents and Young People Living With Perinatally Acquired HIV in Rural, Southwestern Uganda: A Qualitative Study.

ABSTRACT: Despite the availability of antiretroviral therapy, treatment outcomes are worse among adolescents and young adults living with perinatally acquired HIV (AYLPHIV). These disparities are magnified during the transition from pediatric to adult-based HIV care. We conducted in-depth interviews with AYLPHIV aged 15-24 years ( n = 30), their caregivers ( n = 10), and health care providers ( n = 10). All participants provided written assent and/or informed consent to enroll. Thematic content analysis was used to identify and analyze themes relevant to transition readiness. We grouped perspectives on transition readiness into 4 themes: preparation for transition, communication between stakeholders, social support, and timing of transition. AYLPHIV in sub-Saharan Africa who are facing a transition to adult HIV care should be equipped with relevant information about their illness, self-advocacy skills, and support from caregivers and health care providers to remain engaged in HIV care.

How informal healthcare providers improve uptake of HIV testing: qualitative results from a randomized controlled trial.

OBJECTIVE: Uganda is HIV-endemic with a prevalence of 5.7%. Lack of epidemic control has been attributed to low engagement with HIV testing. Collaborating with informal healthcare providers, such as traditional healers, has been proposed as a strategy to increase testing uptake. We explored acceptability and implementation of an HIV testing program where traditional healers delivered point-of-care testing and counseling to adults of unknown serostatus (clinicaltrials.gov NCT#03718871). METHODS: This study was conducted in rural, southwestern Uganda. We interviewed participating traditional healers ( N  = 17) and a purposive sample of trial participants ( N  = 107). Healers were practicing within 10 km of Mbarara township, and 18+ years old. Participants were 18+ years old; sexually active; had received care from participating healers; self-reported not receiving an HIV test in prior 12 months; and not previously diagnosed with HIV infection. Interviews explored perceptions of a healer-delivered HIV testing model and were analyzed following a content-analysis approach. RESULTS: Most participants were female individuals ( N  = 68, 55%). Healer-delivered HIV testing overcame structural barriers, such as underlying poverty and rural locations that limited use, as transportation was costly and often prohibitive. Additionally, healers were located in villages and communities, which made services more accessible compared with facility-based testing. Participants also considered healers trustworthy and 'confidential'. These qualities explain some preference for healer-delivered HIV testing, in contrast to 'stigmatizing' biomedical settings. CONCLUSION: Traditional healer-delivered HIV testing was considered more confidential and easily accessible compared with clinic-based testing. Offering services through traditional healers may improve uptake of HIV testing services in rural, medically pluralistic communities.

Shortening "the Road" to Improve Engagement with HIV Testing Resources: A Qualitative Study Among Stakeholders in Rural Uganda.

In HIV-endemic areas, traditional healers are frequently used with, or instead of, biomedical resources for health care needs. Studies show healers are interested in and capable of supporting patients in the HIV care cascade. However, adults who receive care from healers have low engagement with HIV services. To achieve epidemic control, we must understand gaps between the needs of HIV-endemic communities and the potential for healers to improve HIV service uptake. This study's objective was to characterize stakeholder perspectives on barriers to HIV testing and approaches to mitigate barriers in a medically pluralistic, HIV-endemic region. This study was conducted in Mbarara District, a rural area of southwestern Uganda with high HIV prevalence. Participants included HIV clinical staff, traditional healers, and adults receiving care from healers. Fifty-six participants [N = 30 females (52%), median age 40 years (interquartile range, 32-51.5)] were recruited across three stakeholder groups for minimally structured interviews. Themes were identified using an inductive, grounded theory approach and linked together to create a framework explaining stakeholder perspectives on HIV testing. Stakeholders described the "road" to HIV testing as time-consuming, expensive, and stigmatizing. All agreed healers could mitigate barriers by delivering HIV testing at their practices. Collaborations between biomedical and traditional providers were considered essential to a successful healer-delivered HIV testing program. This work describes a novel approach to "shorten the road" to HIV testing, suggesting that traditional healer-delivered HIV testing holds promise to expand uptake of testing among communities with limited access to existing programs.

Patient experiences and perspectives on hypertension at a major referral hospital in rural southwestern Uganda: a qualitative analysis.

OBJECTIVES: Novel care models are needed to address the large burden of hypertension globally. We aimed to explore how patients in rural Uganda experience and perceive hypertension in order to understand factors that may inform development of a patient-centred care model for hypertension management in this setting. DESIGN: We conducted one-time, in-depth qualitative interviews focusing on participants' experiences and perceptions of the meaning and management of hypertension. SETTING: Outpatient clinic at Mbarara Regional Referral Hospital in Uganda. PARTICIPANTS: We enrolled patients who had hypertension and had used antihypertensive medication for at least 1 month. We used purposive sampling to recruit 30 participants with similar representation by gender and by absence or presence of comorbid conditions. RESULTS: Participants had been diagnosed and initiated care at various clinical stages of hypertension, which impacted their understanding of hypertension. Several participants saw hypertension as a chronic disease that can lead to complications if not controlled, while others attributed symptoms typically associated with other diseases to hypertension. Participants described inconsistent access to antihypertensive medications and difficulty with transport to the clinic (time needed and expense) as the major barriers to access to care. Initiation and maintenance of care were facilitated by family support and ready access to health facilities. Many participants identified an understanding of the important lifestyle and dietary changes required to control hypertension. CONCLUSIONS: Patients with hypertension in rural Uganda demonstrated a varied understanding and experience with hypertension. Interventions leveraging family support may help with patient education and clinical management. Integration of patient perspectives into the care model, patient-centred care, may serve as a successful model for hypertension and potentially delivery of care for other non-communicable diseases in Uganda and other similar resource-limited settings.