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1.
AIDS Behav ; 27(1): 65-74, 2023 Jan.
Article in English | MEDLINE | ID: mdl-35907142

ABSTRACT

Adherence to oral pre-exposure prophylaxis (PrEP) is challenging, and cellular technology offers a promising opportunity for support. However, a recent randomized controlled trial found that SMS reminders did not improve PrEP adherence. We used qualitative methods to explore the trial participants' experiences with the SMS intervention. We conducted serial in-depth interviews with 54 young Kenyan women, using inductive and deductive content analysis . Initially, SMS reminders were highly acceptable. Participants expressed enthusiasm with receiving the reminders because of the coded nature of the SMS reminders; they also helped in 'habit forming' with daily adherence. However, overtime, participants reported growing concerns about privacy, self-efficacy, and responsibility and SMS fatigue. Participants also reported other challenges, including phone loss, poor telephone network, and lack of electricity. Further research to explore if SMS reminders in alternative formats or with different frequency is needed, in addition to identification of alternate adherence support strategies.


Subject(s)
Acquired Immunodeficiency Syndrome , HIV Infections , Text Messaging , Humans , Female , Kenya , HIV Infections/prevention & control , HIV Infections/drug therapy , Reminder Systems , Medication Adherence
2.
PLoS Med ; 18(7): e1003705, 2021 07.
Article in English | MEDLINE | ID: mdl-34270581

ABSTRACT

BACKGROUND: Community engagement is central to the conduct of health-related research studies as a way to determine priorities, inform study design and implementation, increase recruitment and retention, build relationships, and ensure that research meets the goals of the community. Community sensitization meetings, a form of community engagement, are often held prior to the initiation of research studies to provide information about upcoming study activities and resolve concerns in consultation with potential participants. This study estimated demographic, health, economic, and social network correlates of attendance at community sensitization meetings held in advance of a whole-population, combined behavioral, and biomedical research study in rural Uganda. METHODS AND FINDINGS: Research assistants collected survey data from 1,630 adults participating in an ongoing sociocentric social network cohort study conducted in a rural region of southwestern Uganda. These community survey data, collected between 2016 and 2018, were linked to attendance logs from community sensitization meetings held in 2018 and 2019 before the subsequent community survey and community health fair. Of all participants, 264 (16%) attended a community sensitization meeting before the community survey, 464 (28%) attended a meeting before the community health fair, 558 (34%) attended a meeting before either study activity (survey or health fair), and 170 (10%) attended a meeting before both study activities (survey and health fair). Using multivariable Poisson regression models, we estimated correlates of attendance at community sensitization meetings. Attendance was more likely among study participants who were women (adjusted relative risk [ARR]health fair = 1.71, 95% confidence interval [CI], 1.32 to 2.21, p < 0.001), older age (ARRsurvey = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001; ARRhealth fair = 1.02 per year, 95% CI, 1.01 to 1.02, p < 0.001), married (ARRsurvey = 1.74, 95% CI, 1.29 to 2.35, p < 0.001; ARRhealth fair = 1.41, 95% CI, 1.13 to 1.76, p = 0.002), and members of more community groups (ARRsurvey = 1.26 per group, 95% CI, 1.10 to 1.44, p = 0.001; ARRhealth fair = 1.26 per group, 95% CI, 1.12 to 1.43, p < 0.001). Attendance was less likely among study participants who lived farther from meeting locations (ARRsurvey = 0.54 per kilometer, 95% CI, 0.30 to 0.97, p = 0.041; ARRhealth fair = 0.57 per kilometer, 95% CI, 0.38 to 0.86, p = 0.007). Leveraging the cohort's sociocentric design, social network analyses suggested that information conveyed during community sensitization meetings could reach a broader group of potential study participants through attendees' social network and household connections. Study limitations include lack of detailed data on reasons for attendance/nonattendance at community sensitization meetings; achieving a representative sample of community members was not an explicit aim of the study; and generalizability may not extend beyond this study setting. CONCLUSIONS: In this longitudinal, sociocentric social network study conducted in rural Uganda, we observed that older age, female sex, being married, membership in more community groups, and geographical proximity to meeting locations were correlated with attendance at community sensitization meetings held in advance of bio-behavioral research activities. Information conveyed during meetings could have reached a broader portion of the population through attendees' social network and household connections. To ensure broader input and potentially increase participation in health-related research studies, the dissemination of research-related information through community sensitization meetings may need to target members of underrepresented groups.


Subject(s)
Biobehavioral Sciences , Community Participation , Health Behavior , Rural Population , Adolescent , Adult , Female , Humans , Longitudinal Studies , Male , Middle Aged , Social Networking , Uganda , Young Adult
3.
BMC Cancer ; 21(1): 793, 2021 Jul 08.
Article in English | MEDLINE | ID: mdl-34238260

ABSTRACT

BACKGROUND: The evolving nature of multiple myeloma (MM) therapies, including the introduction of novel oral agents, has produced a shift in the delivery of care from hospital to home. Within this context, patients and their caregivers are becoming increasingly engaged in the work of illness management, however the exact nature of this work as well as the ways in which this work informs treatment preferences and decisions within this population has not been explored. This qualitative study sought to develop an in-depth understanding of patient and caregiver experiences with different MM treatments, the work necessitated by MM and treatment management, and the processes of patient/caregiver treatment-related decision making. METHODS: Qualitative interviews were conducted with 16 MM patients and 8 caregivers. Interviews were coded for emergent themes and patterns and a constant comparative approach was used to identify important similarities and differences within and between interviews. RESULTS: Patient and caregiver participants described four types of work, including the work of accruing and personalizing medical knowledge, illness-related work in the hospital, illness-related work in the home, and psychosocial and relational management. They illuminated the physical, psychological, social and relational toll of this work and traced a pathway through which work informed their treatment-related decisions, sometimes in ways that conflicted with their preferences for treatment. CONCLUSIONS: The work involved in managing MM, its treatment, and side-effects can inform the treatment decisions that patients and caregivers make. We must continue to find meaningful ways for patients and caregivers to discuss goals of care and treatment throughout the cancer trajectory, as well as support health care providers in the delivery of person-centred cancer care. With an increasing emphasis on the importance of shared decision making in MM, an improved understanding of the factors that frame patient's and caregiver's treatment decisions will be paramount to ensuring meaningful and high-quality patient-centered care.


Subject(s)
Multiple Myeloma/therapy , Patient-Centered Care/methods , Aged , Caregivers , Decision Making , Female , Humans , Male , Middle Aged , Qualitative Research
4.
AIDS Behav ; 25(7): 2131-2138, 2021 Jul.
Article in English | MEDLINE | ID: mdl-33389324

ABSTRACT

HIV status disclosure remains one of the major challenges to effective HIV prevention. Given the complexities and low rates of disclosure, new innovative strategies are needed. Since electronic adherence monitoring (EAM) are unique mobile devices that light up when transmitting data, those who see them often want to know more about them, which can potentially result in HIV status disclosure. We conducted a qualitative study to explore patient experiences with EAM for antiretroviral therapy (ART) in Uganda with a goal of understanding potential ethical concerns, including disclosure. Unexpectedly, several participants reported intentionally using EAM to facilitate HIV status disclosure to others in order to get social support, encourage HIV testing, and create awareness about HIV. Although researchers and clinicians need to be mindful of the potential for unintended HIV status disclosure through the use of EAM, they should also recognize the potential of this approach to support intended disclosure.


Subject(s)
Disclosure , HIV Infections , Electronics , HIV Infections/diagnosis , HIV Infections/drug therapy , HIV Infections/prevention & control , Humans , Medication Adherence , Uganda
5.
Front Reprod Health ; 3: 637869, 2021.
Article in English | MEDLINE | ID: mdl-36304002

ABSTRACT

Background: In Kenya and elsewhere in sub-Saharan Africa, young women are disproportionately affected by the HIV epidemic compared to young men. The extent to which young women's self-perceptions about risk of HIV acquisition influence their sexual behaviors and use of HIV prevention methods remains unclear. We therefore conducted a qualitative study to explore these issues among young women enrolled in a pre-exposure prophylaxis (PrEP) trial. Methods: From January 2017 to January 2020, we conducted serial semi-structured in-depth interviews 50 purposively selected young women (18-24 years old) who were participating in the MPYA (Monitoring PrEP for Young Adult women) study-a randomized controlled trial in Thika and Kisumu, Kenya, assessing the impact of SMS reminders on PrEP adherence. Interviews were conducted at three time points (~1 week, 3, and 12 months after initiating PrEP). We used an inductive, content analytic approach to identify key themes related to risk perceptions, sexual behavior, and use of HIV prevention tools. Results: Around the time of enrollment, most of the 50 women interviewed reported being at high risk of HIV because of their own sexual behaviors, such as inconsistent condom use, multiple sexual partners, and transactional sex. Additionally, high risk perception was based on the behavior of their partners, such as refusing to use condoms and being unsure of their partner's HIV status. Young women's perceived risk of HIV acquisition was a key motivator for PrEP initiation and continuation. During PrEP use, participants reported feeling protected and at less risk compared to peers who were not taking PrEP. Some reported no longer using condoms because they were confident that PrEP provided enough protection. Over time, many young women reported reducing risky sexual behaviors because of the regular counseling and HIV testing they received as part of their PrEP services. This lowered risk perception was in most cases accompanied by discontinuation of PrEP. Conclusions: HIV risk perception among young women in Kenya was dynamic and influenced their use of PrEP and condoms over time, suggesting an often-deliberate approach to HIV prevention and sexual health.

6.
J Med Internet Res ; 22(9): e18038, 2020 09 10.
Article in English | MEDLINE | ID: mdl-32687473

ABSTRACT

BACKGROUND: High, sustained adherence to HIV antiretroviral therapy (ART) is critical for achieving viral suppression, which in turn leads to important individual health benefits and reduced secondary viral transmission. Electronic adherence monitors record a date-and-time stamp with each opening as a proxy for pill-taking behavior. These monitors can be combined with interventions (eg, data-informed adherence counseling, SMS-based adherence support, and/or alarms) and have been shown to improve adherence in multiple settings. Their use, however, has largely been limited to the research context. OBJECTIVE: The goal of the research was to use the Consolidated Framework for Implementation Research (CFIR) to understand factors relevant for implementing a low-cost electronic adherence monitor and associated interventions for routine HIV clinical care in Uganda. METHODS: We conducted in-depth qualitative interviews with health care administrators, clinicians, and ART clients about likes and dislikes of the features and functions of electronic adherence monitors and associated interventions, their potential to influence HIV care, suggestions on how to measure their value, and recommendations for their use in routine care. We used an inductive, content analysis approach to understand participant perspectives, identifying aspects of CFIR most relevant to technology implementation in this setting. RESULTS: We interviewed 34 health care administrators/clinicians and 15 ART clients. Participants largely saw the monitors and associated interventions as favorable and beneficial for supporting adherence and improving clinical outcomes through efficient, differentiated care. Relevant outside factors included structural determinants of health, international norms around supporting adherence, and limited funding that necessitates careful assessment of costs and benefits. Within the clinic, the adherence data were felt likely to improve the quality of counseling and thereby morale, as well as increase the efficiency of care delivery. Existing infrastructure and care expenditures and the need for proper training were other noted considerations. At the individual level, the desire for good health and a welcomed pressure to adhere favored uptake of the monitors, although some participants were concerned with clients not using the monitors as planned and the influence of poverty, stigma, and need for privacy. Finally, participants felt that decisions around the implementation process would have to come from the Ministry of Health and other funders and would be influenced by sustainability of the technology and the target population for its use. Coordination across the health care system would be important for implementation. CONCLUSIONS: Low-cost electronic adherence monitoring combined with data-informed counseling, SMS-based support, and/or alarms have potential for use in routine HIV care in Uganda. Key metrics of successful implementation will include their impact on efficiency of care delivery and clinical outcomes with careful attention paid to factors such as stigma and cost. Further theory-driven implementation science efforts will be needed to move promising technology from research into clinical care. TRIAL REGISTRATION: ClinicalTrials.gov NCT03825952; https://clinicaltrials.gov/ct2/show/NCT03825952.


Subject(s)
Anti-Retroviral Agents/therapeutic use , HIV Infections/drug therapy , Medication Adherence/psychology , Anti-Retroviral Agents/pharmacology , Female , Humans , Male , Middle Aged , Qualitative Research , Uganda
7.
AIDS Behav ; 24(7): 2227-2228, 2020 07.
Article in English | MEDLINE | ID: mdl-32542475

ABSTRACT

The original version of this article unfortunately contained an error. The authors would like to correct the error with this erratum.

8.
Soc Sci Med ; 245: 112561, 2020 01.
Article in English | MEDLINE | ID: mdl-31790879

ABSTRACT

BACKGROUND: Lack of access to clean water has well known implications for communicable disease risks, but the broader construct of water insecurity is little studied, and its mental health impacts are even less well understood. METHODS AND FINDINGS: We conducted a mixed-methods, whole-population study in rural Uganda to estimate the association between water insecurity and depression symptom severity, and to identify the mechanisms underlying the observed association. The whole-population sample included 1776 adults (response rate, 91.5%). Depression symptom severity was measured using a modified 15-item Hopkins Symptom Checklist for Depression. Water insecurity was measured with a locally validated 8-item Household Water Insecurity Access Scale. We fitted multivariable linear and Poisson regression models to the data to estimate the association between water insecurity and depression symptom severity, adjusting for age, marital status, self-reported overall health, household asset wealth, and educational attainment. These models showed that water insecurity was associated with depression symptom severity (b = 0.009; 95% confidence interval [CI], 0.004-0.15) and that the estimated association was larger among men (b = 0.012; 95% CI, 0.008-0.015) than among women (b = 0.008; 95% CI, 0.004-0.012. We conducted qualitative interviews with a sub-group of 30 participants, focusing on women given their traditional role in household water procurement in the Ugandan context. Qualitative analysis, following an inductive approach, showed that water insecurity led to "choice-less-ness" and undesirable social outcomes, which in turn led to emotional distress. These pathways were amplified by gender-unequal norms. CONCLUSIONS: Among men and women in rural Uganda, the association between water insecurity and depression symptom severity is statistically significant, substantive in magnitude, and robust to potential confounding. Data from the qualitative interviews provide key narratives that reveal the mechanisms through which women's lived experiences with water insecurity may lead to emotional distress.


Subject(s)
Depression/etiology , Water Insecurity , Adult , Depression/psychology , Female , Humans , Male , Middle Aged , Psychometrics/instrumentation , Psychometrics/methods , Rural Population/trends , Socioeconomic Factors , Surveys and Questionnaires , Uganda
9.
AIDS Care ; 31(6): 761-766, 2019 06.
Article in English | MEDLINE | ID: mdl-30606037

ABSTRACT

Novel monitoring technologies in HIV research, such as electronic adherence monitors (EAMs), have changed the nature of researcher-participant interactions. Yet little is known about how EAMs and the resulting interaction between researchers and participants affect research participation and the data gathered. We interviewed participants and research assistants (RAs) in an observational cohort study involving EAMs for HIV antiretroviral therapy (ART) in Uganda. We qualitatively explored interviewees' views about ethical issues surrounding EAMs and assessed data with conventional and directed content analysis. Participants valued their relationships with RAs and were preoccupied with RAs' perceptions of them. Participants were pleased when the EAM revealed regular adherence, and annoyed when it revealed non-adherence that contradicted self-reported pill-taking behavior. For many, the desire to maintain a good impression incentivized adherence. But some sought to creatively conceal non-adherence, or refused to use the EAM to avoid revealing non-adherence to RAs. These findings show that participants' perceptions of the study staff's perceptions of them affected the experience of being monitored, study participation, and ultimately the data gathered in the study. Investigators in monitoring-based research should be aware that social interactions between participants and study staff could affect both the practical and ethical conduct of that research.


Subject(s)
Anti-Retroviral Agents/therapeutic use , Black People/psychology , HIV Infections/drug therapy , Medication Adherence/psychology , Researcher-Subject Relations/psychology , Adult , Black People/statistics & numerical data , Cohort Studies , Confidentiality/ethics , Female , HIV Infections/psychology , Health Services Research , Humans , Interviews as Topic , Male , Middle Aged , Privacy , Qualitative Research , Trust , Uganda
10.
AIDS Behav ; 23(5): 1267-1276, 2019 May.
Article in English | MEDLINE | ID: mdl-30406335

ABSTRACT

Short message service (SMS) surveys are a promising data collection method and were used to measure sexual behavior and adherence to HIV pre-exposure prophylaxis (PrEP) among HIV-uninfected partners of serodiscordant couples enrolled in a sub-study of the Partners Demonstration Project (an open-label study of integrated antiretroviral therapy and PrEP for HIV prevention in Kenya and Uganda). Questionnaires were completed by 142 participants after study exit. Median age was 29 years; 69% were male. Ninety-five percent (95%) felt SMS surveys were "easy" or "very easy", 74% reported no challenges, and 72% preferred SMS surveys over in-person study visits. Qualitative interviews involving 32 participants confirmed the ease of responding to SMS surveys. Participants also indicated that surveys acted as reminders for adherence to PrEP and condom use and were experienced as support from the study. SMS surveys were generally found to be acceptable in this population and provided real-time context of PrEP use.


Subject(s)
Anti-HIV Agents/therapeutic use , HIV Infections/prevention & control , Patient Acceptance of Health Care/statistics & numerical data , Pre-Exposure Prophylaxis , Sexual Behavior/statistics & numerical data , Text Messaging , Adult , Africa, Eastern , Female , Humans , Male , Pre-Exposure Prophylaxis/methods , Prospective Studies , Sexual Partners/psychology
12.
AIDS ; 32(15): 2237-2245, 2018 09 24.
Article in English | MEDLINE | ID: mdl-30005025

ABSTRACT

OBJECTIVE: Short messaging service (SMS) can collect adherence data on a frequent basis and is relatively anonymous, and therefore could potentially reduce recall and social desirability biases prevalent in other self-reported measures. METHODS: We compared SMS self-reported adherence with three self-reported adherence questions (rating of ability to adhere, frequency of doses taken, percentage of doses taken) and two objective adherence measures [electronic adherence monitoring (EAM) and plasma tenofovir levels] using data from HIV-uninfected members of serodiscordant couples enrolled in a preexposure prophylaxis demonstration project in Kenya and Uganda. RESULTS: Of 373 enrolled participants, 256 (69%) were male and median age at enrolment was 29 years (26, 35). Fifty-two percent were from Kenya and median education at enrolment was 10 years (7,12). Overall, median adherence was 90, 75, 85, 94 and 79%, respectively, for self-report by SMS, rating, frequency, percentage and EAM adherence. Spearman's correlation coefficient between SMS and interviewer-administered self-reported measures was 0.18 for rating and frequency, 0.22 for percentage and 0.14 for EAM (all P < 0.001). The estimated difference in average adherence between SMS and self-reported rating, frequency, percentage adherence and EAM was 8.1 (P < 0.001), 0.3 (P = 0.81), -5.2 (P < 0.001) and 9.5 (P < 0.001), respectively. Area under the receiver-operating curve assessing the ability of SMS self-report to discriminate between detectable and undetectable tenofovir was 0.51. CONCLUSION: Our study found low correlation between SMS self-report and other self-reported and objective adherence measures and did not discriminate between detectable and undetectable plasma tenofovir levels. Future use of SMS self-report should explore alternative means for reducing potential biases.


Subject(s)
Anti-HIV Agents/administration & dosage , Chemoprevention/methods , HIV Infections/prevention & control , Medication Adherence/statistics & numerical data , Pre-Exposure Prophylaxis/methods , Reminder Systems , Text Messaging , Adolescent , Adult , Disease Transmission, Infectious/prevention & control , Family Characteristics , Female , HIV Infections/transmission , Humans , Kenya , Male , Prospective Studies , Uganda , Young Adult
13.
AIDS Behav ; 22(10): 3363-3372, 2018 Oct.
Article in English | MEDLINE | ID: mdl-29926301

ABSTRACT

Many new technologies monitor patients' and study participants' medical adherence. Some have cautioned that these devices transgress personal autonomy and ethics. But do they? This qualitative study explored how Ugandan study participants perceive the effect of electronic monitoring of their adherence to antiretroviral therapy (ART) on their freedoms to be non-adherent and pursue other activities that monitoring may inadvertently expose. Between August 2014 and June 2015, we interviewed 60 Ugandans living with HIV and enrolled in the Uganda AIDS Rural Treatment Outcomes (UARTO) study, a longitudinal, observational study involving electronic adherence monitors (EAMs) to assess ART adherence. We also interviewed 6 UARTO research assistants. Both direct and indirect content analysis were used to interpret interview transcripts. We found that monitoring created a sense of pressure to adhere to ART, which some participants described as "forcing" them to adhere. However, even participants who felt that monitoring forced them to take medications perceived using the EAM as conducive to their fundamental goal of high ART adherence. Overall, even if monitoring may have limited participants' effective freedom to be non-adherent, participants welcomed any such effect. No participant rejected the EAM on the grounds that it would limit that effective freedom. Reports that monitoring altered behaviors unrelated to pill-taking were rare. Researchers should continue to be vigilant about the ways in which behavioral health monitoring affects autonomy, but should also recognize that even autonomy-limiting monitoring strategies may enable participants to achieve their own goals.


Subject(s)
Anti-Retroviral Agents/therapeutic use , Black People/psychology , HIV Infections/drug therapy , Medication Adherence/psychology , Adult , Black People/statistics & numerical data , Female , HIV Infections/psychology , Health Services Research , Humans , Interviews as Topic , Male , Middle Aged , Qualitative Research , Rural Population , Uganda
14.
BMC Public Health ; 18(1): 188, 2018 01 29.
Article in English | MEDLINE | ID: mdl-29378548

ABSTRACT

BACKGROUND: For women living with HIV (WLWH) in low- and middle-income countries, World Health Organization (WHO) infant feeding guidelines now recommend exclusive breastfeeding until six months followed by mixed feeding until 24 months, alongside lifelong maternal antiretroviral therapy (ART). These recommendations represent the sixth major revision to WHO infant feeding guidelines since 1992. We explored how WLWH in rural Uganda make infant feeding decisions in light of evolving recommendations. METHODS: We conducted semi-structured interviews with 20 postpartum Ugandan WLWH accessing ART, who reported pregnancy < 2 years prior to recruitment. Interviews were conducted between February-August 2014 with babies born between March 2012-October 2013, over which time, the regional HIV treatment clinic recommended lifelong ART for all pregnant and breastfeeding women (Option B+). Content analysis was used to identify major themes. Infant feeding experiences was an emergent theme. NVivo 10 software was used to organize analyses. RESULTS: Among 20 women, median age was 33 years [IQR: 28-35], number of livebirths was 3 [IQR: 2-5], years on ART was 2.3 [IQR: 1.5-5.1], and 95% were virally suppressed. Data revealed that women valued opportunities to reduce postnatal transmission. However, women made infant feeding choices that differed from recommendations due to: (1) perception of conflicting recommendations regarding infant feeding; (2) fear of prolonged infant HIV exposure through breastfeeding; and (3) social and structural constraints shaping infant feeding decision-making. CONCLUSIONS: WLWH face layered challenges navigating evolving infant feeding recommendations. Further research is needed to examine guidance and decision-making on infant feeding choices to improve postpartum experiences and outcomes. Improved communication about changes to recommendations is needed for WLWH, their partners, community members, and healthcare providers.


Subject(s)
Breast Feeding/psychology , Feeding Behavior/psychology , Guidelines as Topic , HIV Infections/prevention & control , Infant Nutritional Physiological Phenomena , Infectious Disease Transmission, Vertical/prevention & control , Mothers/psychology , Adult , Anti-Retroviral Agents/therapeutic use , Choice Behavior , Fear , Female , HIV Infections/epidemiology , Humans , Infant , Infant, Newborn , Mothers/statistics & numerical data , Rural Population , Uganda/epidemiology , World Health Organization
15.
PLoS One ; 12(9): e0183131, 2017.
Article in English | MEDLINE | ID: mdl-28880892

ABSTRACT

INTRODUCTION: We explored acceptability and feasibility of safer conception methods among HIV-affected couples in Uganda. METHODS: We recruited HIV-positive men and women on antiretroviral therapy (ART) ('index') from the Uganda Antiretroviral Rural Treatment Outcomes cohort who reported an HIV-negative or unknown-serostatus partner ('partner'), HIV-serostatus disclosure to partner, and personal or partner desire for a child within two years. We conducted in-depth interviews with 40 individuals from 20 couples, using a narrative approach with tailored images to assess acceptability of five safer conception strategies: ART for the infected partner, pre-exposure prophylaxis (PrEP) for the uninfected partner, condomless sex timed to peak fertility, manual insemination, and male circumcision. Translated and transcribed data were analyzed using thematic analysis. RESULTS: 11/20 index participants were women, median age of 32.5 years, median of 2 living children, and 80% had HIV-RNA <400 copies/mL. Awareness of HIV prevention strategies beyond condoms and abstinence was limited and precluded opportunity to explore or validly assess acceptability or feasibility of safer conception methods. Four key partnership communication challenges emerged as primary barriers to engagement in safer conception care, including: (1) HIV-serostatus disclosure: Although disclosure was an inclusion criterion, partners commonly reported not knowing the index partner's HIV status. Similarly, the partner's HIV-serostatus, as reported by the index, was frequently inaccurate. (2) Childbearing intention: Many couples had divergent childbearing intentions and made incorrect assumptions about their partner's desires. (3) HIV risk perception: Participants had disparate understandings of HIV transmission and disagreed on the acceptable level of HIV risk to meet reproductive goals. (4) Partnership commitment: Participants revealed significant discord in perceptions of partnership commitment. All four types of partnership miscommunication introduced constraints to autonomous reproductive decision-making, particularly for women. Such miscommunication was common, as only 2 of 20 partnerships in our sample were mutually-disclosed with agreement across all four communication themes. CONCLUSIONS: Enthusiasm for safer conception programming is growing. Our findings highlight the importance of addressing gendered partnership communication regarding HIV disclosure, reproductive goals, acceptable HIV risk, and commitment, alongside technical safer conception advice. Failing to consider partnership dynamics across these domains risks limiting reach, uptake, adherence to, and retention in safer conception programming.


Subject(s)
Fertilization/physiology , Adult , Female , HIV Infections/prevention & control , HIV Seropositivity/physiopathology , Humans , Interpersonal Relations , Male , Pre-Exposure Prophylaxis , Sexual Partners , Uganda
16.
PLoS One ; 12(5): e0176256, 2017.
Article in English | MEDLINE | ID: mdl-28459866

ABSTRACT

The complexities of navigating pregnancy while living with HIV predispose women to additional stress. Finding ways to minimize psychosocial challenges during the perinatal period may maximize the well-being of mothers living with HIV and their children. The goal of this study was to explore psychosocial challenges experienced by women living with HIV (WLWH) during pregnancy and the postpartum. We conducted individual in-depth interviews with 20 WLWH recruited from an HIV treatment cohort study in Mbarara, Uganda as part of a larger study exploring perinatal depression. We conducted content analyses to identify themes related to challenges of WLWH during pregnancy and the postpartum. Participants had a median age of 33 years [IQR: 28-35], a median of 3 living children [IQR: 2-5], and 95% had achieved HIV-RNA suppression. Challenges were organized around the following themes: HIV -related stigma from health professionals, HIV status disclosure dilemma, unintended pregnancy and intimate partner violence, HIV and environmental structural barriers and distress and fear related to maternal and child health. Stigma centered on discrimination by health care professionals and personal shame associated with being pregnant as a WLWH. This led to difficulty engaging in HIV care, particularly when coupled with structural barriers, such as lack of transportation to clinic. Participants experienced intimate partner violence and lacked support from their partners and family members. Distress and fear about the health and uncertainty about the future of the unborn baby due to maternal deteriorating physical health was common. The perinatal period is a time of stress for WLWH. Challenges experienced by WLWH may compromise successful engagement in HIV care and may reduce quality of life for women and their children. Strategies aimed at alleviating the challenges of WLWH should involve the larger structural environment including partners, family and community member as well as policy makers, funders and program implementers to work together for the common cause. These consolidated efforts may not only lower the risk of psychological distress but has potential to create long lasting solutions to benefit the wider community.


Subject(s)
HIV Infections/psychology , Mothers/psychology , Postpartum Period/psychology , Pregnancy Complications, Infectious/psychology , Pregnancy/psychology , Adult , Anti-HIV Agents/therapeutic use , Disclosure , Fear , Female , HIV Infections/drug therapy , Humans , Interviews as Topic , Intimate Partner Violence/psychology , Pregnancy Complications, Infectious/drug therapy , Social Stigma , Stress, Psychological , Uganda
17.
BMC Pregnancy Childbirth ; 17(1): 138, 2017 May 08.
Article in English | MEDLINE | ID: mdl-28482821

ABSTRACT

BACKGROUND: In sub-Saharan Africa, 58% of adults living with HIV are women. In Uganda, HIV prevalence is 8.3% for women compared to 6.1% for men. Access to antiretroviral therapy (ART) and prevention of mother to child transmission (PMTCT) programs have enabled women living with HIV (WLWH) to have children with minimal risk of perinatal transmission. Nevertheless, pregnant WLWH face many challenges. We explored women's perceptions of how they cope with the challenges of pregnancy and the postpartum period as HIV-infected women. METHODS: We conducted semi-structured interviews with postpartum WLWH accessing ART who had a pregnancy within 2 years prior to recruitment between February-August, 2014. Childbearing associated stressors and coping strategies were discussed. We used content analysis to identify major themes and NVivo 10 software facilitated data analysis. RESULTS: Twenty women were interviewed with median age 33 (IQR: 28-35) years, CD4 cell count 677 cells/mm3 (IQR: 440-767), number of live births 4 (IQR: 2-6), and number of living children 3 (IQR: 2-4.3). We summarize five identified coping strategies within a socio-ecological framework according to Bronfenbrenner's Ecological Model. Coping strategies on the individual level included acceptance of self and HIV status, and self-reliance. On the interpersonal level, participants reported coping through support from partners, family, and friends. On the organizational level, participants reported coping through HIV-related healthcare delivery and system supports. At the community level, women reported coping through support from church and spirituality. CONCLUSIONS: The results highlight coping strategies used by WLWH to manage the myriad challenges faced during pregnancy and the postpartum period. Intervention programs for WLWH must emphasize psychosocial care and incorporate strategies that address psychosocial challenges in the HIV care package in order to optimize well-being. Additionally policies that support networks of WLWH should be put in place and funding support should be provided through existing funding mechanisms in order to respond to the needs and challenges of WLWH. Programmes that support WLWH for economic empowerment and improved livelihoods should be strengthened across all regions in the country.


Subject(s)
Adaptation, Psychological , HIV Infections/psychology , Postpartum Period/psychology , Pregnancy Complications, Infectious/psychology , Adult , Female , Humans , Pregnancy , Pregnancy Complications, Infectious/virology , Qualitative Research , Rural Population , Uganda
18.
AIDS Behav ; 21(11): 3129-3140, 2017 Nov.
Article in English | MEDLINE | ID: mdl-28421356

ABSTRACT

Although mobile health (mHealth) technologies have shown promise in improving clinical care in resource-limited settings (RLS), they are infrequently brought to scale. One limitation to the success of many mHealth interventions is inattention to end-user acceptability, which is an important predictor of technology adoption. We conducted in-depth interviews with 43 people living with HIV in rural Uganda who had participated in a clinical trial of a short messaging system (SMS)-based intervention designed to prompt return to clinic after an abnormal laboratory test. Interviews focused on established features of technology acceptance models, including perceived ease of use and perceived usefulness, and included open-ended questions to gain insight into unexplored issues related to the intervention's acceptability. We used conventional (inductive) and direct content analysis to derive categories describing use behaviors and acceptability. Interviews guided development of a proposed conceptual framework, the technology acceptance model for resource-limited settings (TAM-RLS). This framework incorporates both classic technology acceptance model categories as well as novel factors affecting use in this setting. Participants described how SMS message language, phone characteristics, and experience with similar technologies contributed to the system's ease of use. Perceived usefulness was shaped by the perception that the system led to augmented HIV care services and improved access to social support from family and colleagues. Emergent themes specifically related to mHealth acceptance among PLWH in Uganda included (1) the importance of confidentiality, disclosure, and stigma, and (2) the barriers and facilitators downstream from the intervention that impacted achievement of the system's target outcome. The TAM-RLS is a proposed model of mHealth technology acceptance based upon end-user experiences in rural Uganda. Although the proposed model requires validation, the TAM-RLS may serve as a useful tool to guide design and implementation of mHealth interventions.


Subject(s)
Biomedical Technology , HIV Infections/psychology , Literacy , Patient Acceptance of Health Care , Telemedicine , Ambulatory Care Facilities , Confidentiality , Disclosure , Female , HIV Infections/therapy , Health Resources , Humans , Interviews as Topic , Perception , Rural Population , Telemedicine/methods , Telemedicine/standards , Uganda
19.
Soc Sci Med ; 139: 26-35, 2015 Aug.
Article in English | MEDLINE | ID: mdl-26150065

ABSTRACT

In the theory of syndemics, diseases co-occur in particular temporal or geographical contexts due to harmful social conditions (disease concentration) and interact at the level of populations and individuals, with mutually enhancing deleterious consequences for health (disease interaction). This theory has widespread adherents in the field, but the extent to which there is empirical support for the concept of disease interaction remains unclear. In January 2015 we systematically searched 7 bibliographic databases and tracked citations to highly cited publications associated with the theory of syndemics. Of the 783 records, we ultimately included 34 published journal articles, 5 dissertations, and 1 conference abstract. Most studies were based on a cross-sectional design (32 [80%]), were conducted in the U.S. (32 [80%]), and focused on men who have sex with men (21 [53%]). The most frequently studied psychosocial problems were related to mental health (33 [83%]), substance abuse (36 [90%]), and violence (27 [68%]); while the most frequently studied outcome variables were HIV transmission risk behaviors (29 [73%]) or HIV infection (9 [23%]). To test the disease interaction concept, 11 (28%) studies used some variation of a product term, with less than half of these (5/11 [45%]) providing sufficient information to interpret interaction both on an additive and on a multiplicative scale. The most frequently used specification (31 [78%]) to test the disease interaction concept was the sum score corresponding to the total count of psychosocial problems. Although the count variable approach does not test hypotheses about interactions between psychosocial problems, these studies were much more likely than others (14/31 [45%] vs. 0/9 [0%]; χ2 = 6.25, P = 0.01) to incorporate language about "synergy" or "interaction" that was inconsistent with the statistical models used. Therefore, more evidence is needed to assess the extent to which diseases interact, either at the level of populations or individuals, to amplify HIV risk.


Subject(s)
Cluster Analysis , HIV Infections/psychology , Homosexuality, Male/psychology , Risk-Taking , Social Problems/psychology , Cross-Sectional Studies , HIV Infections/epidemiology , Humans , Male , United States/epidemiology
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