Publications by authors named "Jamilah Taylor"

10 Publications

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How does qualitative data collection modality affect disclosure of sensitive information and participant experience? Findings from a quasi-experimental study.

Qual Quant 2021 Sep 2:1-20. Epub 2021 Sep 2.

FHI 360, Behavioral, Epidemiological, and Clinical Sciences, Durham, NC USA.

Focus groups (FGs) and individual interviews (IDIs) can be conducted in-person or in several different online contexts. We conducted a quasi-experimental study and assessed sharing of sensitive or dissenting information and participant comfort in FGs and IDIs across four modalities: (1) in-person, (2) online video-based, (3) online chat-based (synchronous), and (4) online email/message board-based (asynchronous). Participants were systematically assigned to one of the four modalities and randomized to one of 24 FGs or 48 IDIs ( = 171). The study topic was medical risk during pregnancy. All participants also completed a survey on their perceptions of the data collection process. We found no significant difference in the frequency of disclosure of sensitive information by modality. Text-based FGs (chat and message board) were more likely to contain dissenting opinions than visually-based FGs (in-person and video). Participants also reported feeling less rapport and personal comfort in sharing information in the FG video modality than other modalities. These findings provide initial data that can guide researchers in choosing among data collection modalities to maximize participant engagement and comfort.
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September 2021

Using financial diaries to understand the economic lives of HIV-positive pregnant women and new mothers in PMTCT in Zomba, Malawi.

PLoS One 2021 30;16(7):e0252083. Epub 2021 Jul 30.

Global Health and Population Research, Durham, North Carolina, United States of America.

Background: Economic strengthening (ES) interventions can address economic barriers to retention and adherence (R&A) to antiretroviral therapy in prevention of mother-to-child transmission (PMTCT) services. To inform tailoring of ES activities for PMTCT, we used financial diaries to understand the economic lives of women in PMTCT and examine associations between participants' finances and their R&A.

Methods: We collected financial data from a stratified sample (n = 241) of HIV-positive pregnant women and new mothers enrolled in PMTCT from three clinics in Zomba, Malawi. For 30 weeks, participants met with staff to record cash and in-kind inflows and outflows. We used clinical records to calculate a measure of R&A for each participant. We summarized diary data using R and used cox proportional hazard models to examine the relationship between R&A and participant characteristics and behavior.

Results: There were 68,097 cash transactions over 30 weeks, with 10% characterized as inflows. The median value of cash inflows was US$3.54 compared with US$0.42 for cash outflows. Fewer than 7% of total transactions were considered related to PMTCT, with the majority classified as food or drink. Participants in the rural site had the lowest hazard of non-adherence. Decreased hazard of non-adherence was also linked to having dependents and years on ART. There were significant differences in cash inflows and outflows between those who were always adherent and those who were not.

Conclusions: Financial inflows were large and erratic, whereas outflows were small but consistent. PMTCT expenses comprised a small proportion of overall expenses and focused on proper nutrition. The influence of inflows and outflows on adherence was significant but small; however, always adherent participants demonstrated smoother inflows and outflows, indicating an association between greater adherence and economic stability. Participants would benefit from interventions that bolster and stabilize their economic lives, including income generating activities in the agricultural industry and inclusion in village banks.
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July 2021

Influences on willingness to use vaginal or oral HIV PrEP during pregnancy and breastfeeding in Africa: the multisite MAMMA study.

J Int AIDS Soc 2020 06;23(6):e25536

University of Zimbabwe College of Health Sciences Clinical Trials Research Centre, Harare, Zimbabwe.

Introduction: Women in sub-Saharan Africa spend a substantial portion of their reproductive lives pregnant and/or breastfeeding (P/BF), yet they have limited options to prevent HIV during these maternal stages. In preparation for phase 3b prevention trials in P/BF women, we explored attitudes about using a vaginal ring or oral pills for pre-exposure prophylaxis (PrEP), perceptions of HIV risk during P/BF and key influences on future PrEP use.

Methods: In 2018, we conducted 16 single-sex focus group discussions (FGDs) with community- and clinic-recruited HIV-uninfected women, currently or recently P/BF, aged 18 to 40, and men with (currently or recently) P/BF partners, aged 18+. Participants completed a behavioural questionnaire, viewed an educational video and handled prototype placebo products. FGDs were conducted in local languages and transcribed, coded and analysed, using a socio-ecological framework, for key influences on willingness to use products, HIV risk perceptions and opinions on product attributes.

Results: Of the 128 participants (65 women, 63 men) 75% lived with their partner and 84% had a child. Women reported the most important influencers when P/BF were partners, and all stated that health decisions when P/BF are typically made jointly (e.g. medication use; ante/postnatal and baby care). There was consensus that P/BF women are at high risk for HIV, primarily because of their partner's infidelities, and new prevention options were welcomed. Participants valued multiple options and stated that woman's personal preference would be key to product choice. Anticipated concerns about products included risk of miscarriage, impact on infant development, complications during delivery and adequate production or taste of breastmilk. Specific perceived disadvantages emerged for the ring (e.g. vaginal discomfort, difficulty inserting/removing) and for pills (e.g. nausea/vomiting) that may be exacerbated during pregnancy. Health care providers' (HCPs) knowledge and approval of product use during P/BF was needed to mitigate anticipated fears.

Conclusions: Participants perceived pregnancy and breastfeeding as high HIV risk periods and valued new prevention options. HIV protection of the mother-child dyad, safety of the baby, and ultimately, health of the family were paramount. Endorsement by HCPs and support from partners were key to future product acceptance. Participants recommended involving partners and HCPs in sensitization efforts for future trials.
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June 2020

It's all in the timing: Acceptability of a financial incentive intervention for linkage to HIV care in the HPTN 065 (TLC-Plus) study.

PLoS One 2018 2;13(2):e0191638. Epub 2018 Feb 2.

Science Facilitation, HPTN Leadership and Operations Center, FHI 360, Durham, NC, United States of America.

The HPTN 065 (TLC-Plus) study tested the feasibility and effectiveness of using financial incentives (FIs) to increase linkage to care (L2C) among individuals with newly diagnosed HIV and those out of care in the Bronx, NY and Washington, DC. Qualitative data collection with a subset of participating patients and staff focused on experiences with and attitudes about the FI intervention. Semi-structured interviews were conducted with 15 patients and 14 site investigators. Four focus group discussions were conducted with a total of 15 staff members. The use of FIs for L2C was generally viewed favorably. Patients were grateful and benefited financially, but sites had some challenges implementing the program. Challenges included the timing and sensitive introduction of the intervention immediately after an HIV diagnosis, negative attitudes towards paying people for health behaviors, and the existence and strength of existing linkage programs. Future programs should consider optimal timing and presentation of FIs.
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March 2018

Assays for estimating HIV incidence: updated global market assessment and estimated economic value.

J Int AIDS Soc 2017 11;20(3)

Global Health, Population and Nutrition, FHI 360, Durham, NC, USA.

Introduction: Accurate incidence estimates are needed to characterize the HIV epidemic and guide prevention efforts. HIV Incidence assays are cost-effective laboratory assays that provide incidence estimates from cross-sectional surveys. We conducted a global market assessment of HIV incidence assays under three market scenarios and estimated the economic value of improved incidence assays.

Methods: We interviewed 27 stakeholders, and reviewed journal articles, working group proceedings, and manufacturers' sales figures. We determined HIV incidence assay use in 2014, and estimated use in 2015 to 2017 and in 5 to 10-years under three market scenarios, as well as the cost of conducting national and key population surveys using an HIV incidence assay with improved performance.

Results: Global 2014 HIV incidence assay use was 308,900 tests, highest in Asia and mostly for case- and population-based surveillance. Estimated 2015 to 2017 use was 94,475 annually, with declines due to China and the United States discontinuing incidence assay use for domestic surveillance. Annual projected 5 to 10 year use under scenario 1 - no change in technology - was 94,475. For scenario 2 - a moderately improved incidence assay - projected annual use was 286,031. Projected annual use for scenario 3 - game-changing technologies with an HIV incidence assay part of (a) standard confirmatory testing, and (b) standard rapid testing, were 500,000 and 180 million, respectively. As HIV incidence assay precision increases, decreased sample sizes required for incidence estimation resulted in $5 to 23 million annual reductions in survey costs and easily offset the approximately $3 million required to develop a new assay.

Conclusions: Improved HIV incidence assays could substantially reduce HIV incidence estimation costs. Continued development of HIV incidence assays with improved performance is required to realize these cost benefits.
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November 2017

The Role of Financial Incentives Along the Antiretroviral Therapy Adherence Continuum: A Qualitative Sub-study of the HPTN 065 (TLC-Plus) Study.

AIDS Behav 2018 01;22(1):245-257

Science Facilitation, FHI 360, 359 Blackwell St, Durham, NC, USA.

The stages of change (SOC) theory suggests individuals adapt incrementally to behaviors like adherence, requiring different strategies over the behavior change continuum. Offering financial incentives (FIs) is one strategy to motivate adherence. This qualitative sub-study examined adherence barriers and the role of FIs to increase viral suppression (VS) among HIV Prevention Trials Network (HPTN) 065 study participants categorized into SOC-related adherence stages based on changes from baseline to follow-up viral load tests. Of 73 participants, most were in Maintenance stage (n = 31), defined as having achieved VS throughout HPTN 065, or in Action stage (n = 29), defined as moving from virally unsuppressed to suppressed in 50% or more of tests. Only 13 were Low Adherers, having achieved VS in fewer than 50% of tests. The latter group faced substantial social and structural adherence barriers. Participants in the Action stage made positive changes to adherence routines to achieve VS. Those in Maintenance were less incentivized by FIs, as they were already committed. Results from this sub-study suggest FI effectiveness may vary across the SOC continuum, with greatest impact for those initiating antiretroviral or without explicit adherence routines. FIs may be insufficient to overcome strong social or structural barriers, and unnecessary for those intrinsically committed to remaining adherent.
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January 2018

Beyond the Page: A Process Review of Using Ethnodrama to Disseminate Research Findings.

J Health Commun 2017 06 9;22(6):532-544. Epub 2017 May 9.

a Global Health Research, FHI 360 , Durham , North Carolina , USA.

Public health researchers are charged with communicating study findings to appropriate audiences. Dissemination activities typically target the academic research community. However, as participatory research grows, researchers are increasingly exploring innovative dissemination techniques to reach broader audiences, particularly research participants and their communities. One technique is ethnodrama/ethnotheatre, a written or live performance based on study findings. Though used effectively in social change programs, dramas are seldom used to distribute research findings exclusively. Therefore, little information is available about planning and implementing an ethnodrama for this purpose. We present a case study describing the process of planning and implementing an ethnodrama in the context of the Durham Focus Group Study, which explored men's health-seeking behaviors and experiences with health and healthcare services in Durham, North Carolina. Here, we highlight lessons learned throughout the production of the ethnodrama, and how we addressed challenges associated with transforming research data into educational entertainment. Additionally, we provide discussion of audience feedback, which indicated that our ethnodrama evoked an urgency to change health behaviors among lay persons (67%) and delivery of health services among those identifying as providers (84%), pointing to the success of the performance in both entertaining and educating the audience.
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June 2017

"It Makes You Feel Like Someone Cares" acceptability of a financial incentive intervention for HIV viral suppression in the HPTN 065 (TLC-Plus) study.

PLoS One 2017 9;12(2):e0170686. Epub 2017 Feb 9.

Science Facilitation Department, FHI 360, Durham, North Carolina, United States of America.

Background: HPTN 065 (TLC-Plus) evaluated the feasibility and effectiveness of providing quarterly $70 gift card financial incentives to HIV-infected patients on antiretroviral therapy (ART) to encourage ART adherence and viral suppression, and represents the largest study to-date of a financial incentive intervention for HIV viral suppression. A post-trial qualitative substudy was undertaken to examine acceptability of the financial incentives among those receiving and implementing the intervention.

Methods: Between July and October 2013, semi-structured interviews were conducted with 72 patients and 12 investigators from 14 sites; three focus groups were conducted with 12 staff from 10 sites. Qualitative data collection elicited experiences with and attitudes about the intervention, including philosophical viewpoints and implementation experiences. Transcripts were analyzed in NVivo 10. Memos and matrices were developed to explore themes from different participant group perspectives.

Results: Patients, investigators, and staff found the intervention highly acceptable, primarily due to the emotional benefits gained through giving or receiving the incentive. Feeling rewarded or cared for was a main value perceived by patients; this was closely tied to the financial benefit for some. Other factors influencing acceptability for all included perceived effectiveness and health-related benefits, philosophical concerns about the use of incentives for health behavior change, and implementation issues. The termination of the incentive at the end of the study was disappointing to participants and unexpected by some, but generally accepted.

Conclusion: Positive experiences with the financial incentive intervention and strategies used to facilitate implementation led to high acceptability of the intervention, despite some reluctance in principle to the use of incentives. The findings of this analysis provide encouraging evidence in support of the acceptability of a large-scale financial incentive intervention for HIV viral suppression in a clinical setting, and offer valuable lessons for future applications of similar interventions.
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August 2017

Participants' Explanations for Nonadherence in the FEM-PrEP Clinical Trial.

J Acquir Immune Defic Syndr 2016 Apr;71(4):452-61

*Social and Behavioral Health Sciences, FHI 360, Durham, NC; †Currently, Department of General Internal Medicine, Duke University, Durham, NC; ‡Currently, Duke Clinical Research Institute, Duke University, Durham, NC; §Impact Research and Development Organization, Kisumu, Kenya; ‖Setshaba Research Centre, Soshanguve, South Africa; ¶Clinical Sciences, FHI 360, Durham, NC; and #The Bill & Melinda Gates Foundation, Seattle, WA.

Background: FEM-PrEP-a clinical trial of daily, oral emtricitabine/tenofovir disoproxil fumarate for HIV prevention among women in sub-Saharan Africa-did not show a reduction in HIV acquisition because of low adherence to the study pill. We conducted a follow-up study to identify reasons for nonadherence.

Methods: Qualitative, semistructured interviews (n = 88) and quantitative, audio computer-assisted self-interviews (n = 224) were conducted with former FEM-PrEP participants in Bondo, Kenya, and Pretoria, South Africa. Thematic analysis was used to analyze the qualitative data, and descriptive statistics were used to describe audio computer-assisted self-interviews responses. Data are presented within the 5 categories of Ickovics' and Meisler's conceptual framework on adherence: (1) the individual, (2) trial characteristics and study pill regimen, (3) patient-provider relationship, (4) clinical setting, and (5) the disease.

Results: Participants' explanations for nonadherence were primarily situated within 3 of the framework's 5 categories: (1) the individual, (2) trial characteristics and study pill regimen, and (3) the disease. Concerns about the investigational nature of the drug being tested and side effects were the prominent reasons reported for nonadherence. Participants also described being discouraged from taking the study pill by members of the community, their sexual partners, and other participants, primarily because of these same concerns. Limited acceptability of the pill's attributes influenced nonadherence for some participants as did concerns about HIV-related stigma. In addition, many participants reported that others continued in FEM-PrEP while not taking the study pill because of the trial's ancillary benefits and visit reimbursement-factors related to the clinical setting. Negative patient-provider relationships were infrequently reported as a factor that influenced nonadherence.

Conclusions: Despite substantial study staff engagement with participants and communities, concerns about the study pill and discouragement from others seemed to have influenced nonadherence considerably. Alternative study designs or procedures and enhanced community engagement paradigms may be needed in future studies.
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April 2016

Widow cleansing and inheritance among the Luo in Kenya: the need for additional women-centred HIV prevention options.

J Int AIDS Soc 2014 26;17:19010. Epub 2014 Jun 26.

Social and Behavioral Health Sciences Department, FHI 360, Durham, NC, USA.

Introduction: The customs of widow cleansing and widow inheritance are practiced in several communities throughout sub-Saharan Africa. In the Nyanza Province of Kenya, according to tradition, Luo widows are expected to engage in sexual intercourse with a "cleanser," without the use of a condom, in order to remove the impurity ascribed to her after her husband's death. Luo couples, including widows, are also expected to engage in sex preceding specific agricultural activities, building homes, funerals, weddings, and other significant cultural and social events. Widows who are inherited for the purpose of fulfilling cultural obligation have a higher prevalence of HIV than those who remain un-inherited or are inherited for the purpose of companionship.

Methods: As part of a larger descriptive qualitative study to inform study procedures for FEM-PrEP, an HIV prevention pre-exposure prophylaxis clinical trial, we conducted 15 semi-structured interviews (SSIs) with widows, 15 SSIs with inheritors, and four focus group discussions with widows in the Bondo and Rarieda districts in Nyanza Province to explore the HIV risk context within widow cleansing and inheritance practices. Thematic qualitative analysis was used to analyze the data.

Results: The majority of widows reported in the demographic questionnaire being inherited, and most widows in the SSIs described participating in the cleansing ritual. We identified two main themes related to HIV prevention within the context of widow cleansing and inheritance: 1) widows must balance limiting their risk for HIV infection with meeting cultural expectations and ensuring that their livelihood needs are met, and 2) sexual abstinence undermines cultural expectations in widowhood while the use of condoms is deemed inappropriate in fulfilling culturally prescribed sexual rituals, and is often beyond the widow's ability to negotiate.

Conclusions: Women-controlled HIV prevention methods such as antiretroviral-based oral pre-exposure prophylaxis, vaginal gels, and vaginal rings are needed for HIV-negative widows who engage in sexual rituals related to widowhood.
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September 2014