"A Soft Death": Perceptions and Attitudes Toward Palliative Care in Senegal.

Background and Objectives: Palliative care (PC) is a specialty medical service that aims to address the bio-psycho-social-spiritual needs of patients with serious illnesses and their care partners. Despite the value of PC, its expansion in Sub-Saharan Africa has been uneven and particularly underdeveloped in Senegal due to variability in access to training resources and funding. This study sought to understand the current landscape of PC services in Senegal and the barriers and opportunities in its growth. Research Design and Methods: Semistructured interviews were conducted with six PC clinicians, four caregivers of people with serious illnesses, one driver for a PC service, and one public health professor, all native to Senegal. Questions addressed their experience delivering or receiving PC, perceptions of barriers to implementation and access, and recommendations for additional resources and initiatives. Interviews were translated and transcribed from French into English. Transcripts were qualitatively coded for concepts during open and focused coding to identify themes. Results: Five themes were identified: (1) the current landscape of PC, (2) barriers to implementing PC, (3) strategies and philosophies in care, (4) unique features of Senegalese culture, and (5) the future of PC. Discussion and Implications: Our findings demonstrate that PC in Senegal remains an underresourced and underutilized specialty medical service, but work is being done by personally committed clinicians. Results can inform PC expansion by highlighting important cultural factors influencing care in Senegal, as well as the need to expand training opportunities for clinicians, increase education of other medical providers and the public about the nature of PC, integrate PC into the healthcare system, and expand research to evaluate the impact of these resources. PC has the potential to be an important force for improving the quality of life for Senegalese patients and their care partners.

Estimating the effects of COVID-19 on essential health services utilization in Uganda and Bangladesh using data from routine health information systems.

Background: Since March 2020, the coronavirus disease 2019 (COVID-19) pandemic has been a major shock to health systems across the world. We examined national usage patterns for selected basic, essential health services, before and during the COVID-19 pandemic in Uganda and Bangladesh, to determine whether COVID-19 affected reporting of service utilization and the use of health services in each country. Methods: We used routine health information system data since January 2017 to analyze reporting and service utilization patterns for a variety of health services. Using time series models to replicate pre-COVID-19 trajectories over time we estimated what levels would have been observed if COVID-19 had not occurred during the pandemic months, starting in March 2020. The difference between the observed and predicted levels is the COVID-19 effect on health services. Results: The time trend models for Uganda and Bangladesh closely replicated the levels and trajectories of service utilization during the 38 months prior to the COVID-19 pandemic. Our results indicate that COVID-19 had severe effects across all services, particularly during the first months of the pandemic, but COVID-19 impacts on health services and subsequent recovery varied by service type. In general, recovery to expected levels was slow and incomplete across the most affected services. Conclusion: Our analytical approach based on national information system data could be very useful as a form of surveillance for health services disruptions from any cause leading to rapid responses from health service managers and policymakers.

Patient and caregiver questions and clinician responses during initial outpatient neuropalliative care appointments.

Objective: Open communication during appointments exemplifies person-centered care. The current study characterized questions asked by persons with neurologic illnesses and their caregivers-and clinicians' responses to those questions-during initial outpatient palliative care appointments. Methods: We coded type (direct or indirect) and topic of questions stated by patients and their caregivers in audio recordings from 38 initial outpatient palliative care appointments. We also coded the completeness and quality features of clinicians' responses. Results: Patients and caregivers stated 556 total questions; most were direct questions (79.7%) and primarily about symptoms, treatment, and lifestyle issues. Clinicians responded to more than 90% of all questions. Responses to both question types were similar in completeness and quality, but clinicians more frequently offered support in response to direct questions and gave recommendations in response to indirect questions. Conclusion: Persons with neurologic illnesses and their caregivers use different question types to obtain information about symptoms and treatment during initial palliative care appointments. Results may guide clinician training and patient education for optimizing information exchange in palliative care. Innovation: This study is the first to explore patient and caregiver use of indirect questions in neuropalliative care appointments and the quality of clinicians' responses to those questions.

Area-specific covid-19 effects on health services utilization in the Democratic Republic of the Congo using routine health information system data.

BACKGROUND: Since March 2020, the COVID-19 pandemic has shocked health systems worldwide. This analysis investigated the effects of the pandemic on basic health services utilization in the Democratic Republic of the Congo (DRC) and examined the variability of COVID effects in the capital city Kinshasa, in other urban areas, and in rural areas. METHODS: We estimated time trends models using national health information system data to replicate pre-COVID-19 (i.e., January 2017-February 2020) trajectories of health service utilization, and then used those models to estimate what the levels would have been in the absence of COVID-19 during the pandemic period, starting in March 2020 through March 2021. We classified the difference between the observed and predicted levels as the effect of COVID-19 on health services. We estimated 95% confidence intervals and p-values to examine if the effect of the pandemic, nationally and within specific geographies, was statistically significant. RESULTS: Our results indicate that COVID-19 negatively impacted health services and subsequent recovery varied by service type and by geographical area. COVID-19 had a lasting impact on overall service utilization as well as on malaria and pneumonia-related visits among young children in the DRC. We also found that the effects of COVID-19 were even more immediate and stronger in the capital city of Kinshasa compared with the national effect. Both nationally and in Kinshasa, most affected services had slow and incomplete recovery to expected levels. Therefore, our analysis indicates that COVID-19 continued to affect health services in the DRC throughout the first year of the pandemic. CONCLUSIONS: The methodology used in this article allows for examining the variability in magnitude, timing, and duration of the COVID effects within geographical areas of the DRC and nationally. This analytical procedure based on national health information system data could be applied to surveil health service disruptions and better inform rapid responses from health service managers and policymakers.

Effects of a Patient Question Prompt List on Question Asking and Self-Efficacy During Outpatient Palliative Care Appointments.

CONTEXT: Question prompt lists (QPLs) promote participation during medical appointments, including in the context of serious illness care. However, no studies have used parameters of a theoretical framework to examine the effects of QPL use in outpatient palliative care. OBJECTIVES: The current pilot randomized controlled trial evaluated use of a 25-question QPL during initial outpatient palliative care appointments. We applied tenets of Self-Efficacy Theory to investigate how use of a QPL affected appointment participation and perceived self-efficacy. METHODS: Participants were patients and care partners attending the patient's first palliative care appointment. Participants either received a QPL before the appointment (n = 29 appointments) or usual care (n = 30 appointments). Audio recordings of appointments were coded for total questions asked. Participants reported perceived self-efficacy in question asking pre- and postappointment. Analysis of variance was used to compare appointment participation between study conditions, and a linear mixed effects model was used to compare changes in ratings of perceived self-efficacy. RESULTS: Participants who received the QPL did not ask significantly more questions compared to participants in usual-care appointments. There was a main effect of time on self-efficacy in question asking, such that self-efficacy increased from pre- to postappointment, but there was no effect of the intervention. CONCLUSION: Despite their promise in previous studies, results of the current study suggest that QPLs may lack potency to shift patient and care partner question asking in palliative care appointments, and that other mechanisms outlined in Self-Efficacy Theory may characterize the relation between question asking and self-efficacy.

Physical Disabilities and Low Cognitive Ability Increase Odds of Minor Sex Exchange among Adolescent Males in the United States.

Disability is a well-established risk factor for sexual violence victimization among both male and female children. Some research indicates that adolescent females with disabilities are at higher risk of experiencing minor sex exchange (a form of minor sex trafficking victimization) compared to females without disabilities, but there is a dearth of similar research among adolescent males. This study investigates whether physical disability and low cognitive ability are related to sex exchange among minor adolescent males. This cross-sectional analysis using data from a nationally representative cohort study, The National Longitudinal Study of Adolescent to Adult Health (Add Health), included 4,401 male participants who were age 18 or younger at Wave II. Unadjusted and adjusted logistic regression models estimated the odds of adolescent experiences of sex exchange by physical disability and cognitive ability. Both severe physical disability and low cognitive ability in adolescent males were significantly associated with increased odds of exchanging sex, results similar to those found in studies of adolescent females. Because of these associations for both males and females, disability should be taken into account when designing and implementing prevention and intervention programs related to sex trafficking. These results underscore the importance of addressing system-wide gaps contributing to the relationship between disability and the involvement of minors in commercial sex exchange.

Minor sex trafficking of girls with disabilities.

Purpose ­: The purpose of this paper is to investigate the associations between minor women' (girls') disability status and victimization via minor sex trafficking. Design/methodology/approach ­: This investigation used data from the National Longitudinal Study of Adolescent to Adult Health, a large, nationally-representative sample of in-school adolescents in the USA that began in 1994. The analysis included bivariate associations between physical disability status or low cognitive ability and minor sex trafficking among female survey respondents (n = 5,430). Findings ­: Girls with any disability had a higher prevalence of minor sex trafficking than their peers without disabilities. Odds of minor sex trafficking were significantly higher for those with severe physical disabilities (5.83) and for those with low cognitive abilities (4.86) compared to the odds of their peers without their respective disabilities. Results for girls with mild or moderate physical disabilities were not statistically significant compared to peers without disabilities. Social implications ­: These nationally-representative survey data reinforce the trends present in smaller populations and case study research: female adolescents with disabilities are at a heightened risk for sex trafficking. On both a national and global scale, the human rights gaps in policy and practice must be addressed to adequately reach, intervene and protect this vulnerable population. Originality/value ­: Research about minor sex trafficking typically relies on small-scale surveys and/or convenience samples. This study used a nationally-representative survey to demonstrate the link between disability status and women's experiences with minor sex trafficking.

Interventions to improve antiretroviral therapy adherence among adolescents in low- and middle-income countries: A systematic review of the literature.

INTRODUCTION: Globally, an estimated 30% of new HIV infections occur among adolescents (15-24 years), most of whom reside in sub-Saharan Africa. Moreover, HIV-related mortality increased by 50% between 2005 and 2012 for adolescents 10-19 years while it decreased by 30% for all other age groups. Efforts to achieve and maintain optimal adherence to antiretroviral therapy are essential to ensuring viral suppression, good long-term health outcomes, and survival for young people. Evidence-based strategies to improve adherence among adolescents living with HIV are therefore a critical part of the response to the epidemic. METHODS: We conducted a systematic review of the peer-reviewed and grey literature published between 2010 and 2015 to identify interventions designed to improve antiretroviral adherence among adults and adolescents in low- and middle-income countries. We systematically searched PubMed, Web of Science, Popline, the AIDSFree Resource Library, and the USAID Development Experience Clearinghouse to identify relevant publications and used the NIH NHLBI Quality Assessment Tools to assess the quality and risk of bias of each study. RESULTS AND DISCUSSION: We identified 52 peer-reviewed journal articles describing 51 distinct interventions out of a total of 13,429 potentially relevant publications. Forty-three interventions were conducted among adults, six included adults and adolescents, and two were conducted among adolescents only. All studies were conducted in low- and middle-income countries, most of these (n = 32) in sub-Saharan Africa. Individual or group adherence counseling (n = 12), mobile health (mHealth) interventions (n = 13), and community- and home-based care (n = 12) were the most common types of interventions reported. Methodological challenges plagued many studies, limiting the strength of the available evidence. However, task shifting, community-based adherence support, mHealth platforms, and group adherence counseling emerged as strategies used in adult populations that show promise for adaptation and testing among adolescents. CONCLUSIONS: Despite the sizeable body of evidence for adults, few studies were high quality and no single intervention strategy stood out as definitively warranting adaptation for adolescents. Among adolescents, current evidence is both sparse and lacking in its quality. These findings highlight a pressing need to develop and test targeted intervention strategies to improve adherence among this high-priority population.

Improving retention in HIV care among adolescents and adults in low- and middle-income countries: A systematic review of the literature.

INTRODUCTION: Adolescents living with HIV are an underserved population, with poor retention in HIV health care services and high mortality, who are in need of targeted effective interventions. We conducted a literature review to identify strategies that could be adapted to meet the needs of adolescents living with HIV. METHODS: We searched PubMed, Web of Science, Popline, USAID's AIDSFree Resource Library, and the USAID Development Experience Clearinghouse for relevant studies published within a recent five-year period. Studies were included if they described interventions to improve the retention in care of HIV-positive patients who are initiating or already receiving antiretroviral therapy in low- and middle-income countries. To assess the quality of the studies, we used the NIH NHLBI Study Quality Assessment Tools. RESULTS AND DISCUSSION: Of 13,429 potentially relevant citations, 23 were eligible for inclusion. Most studies took place in sub-Saharan Africa. Only one study evaluated a retention intervention for youth (15-24 years); it found no difference in loss to follow-up between a youth-friendly clinic and a family-oriented clinic. A study of community-based service delivery which was effective for adults found no effect for youths. We found no relevant studies conducted exclusively with adolescent participants (10-19 years). Most studies were conducted with adults only or with populations that included adults and adolescents but did not report separate results for adolescents. Interventions that involved community-based services showed the most robust evidence for improving retention in care. Several studies found statistically significant associations between decentralization, down-referral of stable patients, task-shifting of services, and differentiated care, and retention in care among adults; however, most evidence comes from retrospective, observational studies and none of these approaches were evaluated among adolescents or youth. CONCLUSIONS: Interventions that target retention in care among adolescents living with HIV are rare in the published literature. We found only two studies conducted with youth and no studies with adolescents. Given the urgent need to increase the retention of adolescents in HIV care, interventions that are effective in increasing adult retention in care should be considered for adaptation and evaluation among adolescents and interventions specifically targeting the needs of adolescents must be developed and tested.