To research (or not) that is the question: ethical issues in research when medical care is disrupted by political action: a case study from Eldoret, Kenya

While considerable attention has been focused on understanding the myriad of ethical analysis in international research in low and middle income countries, new issues always arise that have not been anticipated in guidelines or studied extensively. The disruption of medical care arising as a direct result of political actions, including strikes, postelection violence and related activities, is one such issue that leaves physician-researchers struggling to manage often conflicting professional responsibilities. This paper discusses the ethical conflicts that arise for physician-researchers, particularly when disruption threatens the completion of a study or completion is possible but at the expense of not addressing unmet medical needs of patients. We review three pragmatic strategies and the ethical issues arising from each: not starting research, stopping research that has already started, and continuing research already initiated. We argue that during episodes of medical care disruption, research that has been started can be continued only if the ethical standards imposed at the beginning of the study can continue to be met; however, studies that have been approved but not yet started should not begin until the disruption has ended and ethical standards can again be assured

Knowledge and perceptions on childhood asthma among care-takers of children with asthma at a National Referral Hospital in Western Kenya: a descriptive study

Background: Identifying knowledge gaps in asthma self-management and identifying existing myths is an important step in determining appropriate health education and demystifying the myths so as to enhance asthma control.Objective: To identify existing knowledge gaps and perceptions among the caregivers of asthmatic children.Methods: A cross sectional study was done among caretakers of asthmatic children aged 6-11 years at Moi Teaching and Referral Hospital. Data on knowledge and perceptions among caretakers was collected using a questionnaire.  Results: A total of 116 caretakers were recruited of whom 71.6% were mothers. Although 60% of the caretakers had asthma medications at home, only a third felt their children were asthmatic. Eighty four (72.4%) had basic asthma knowledge. Syrups were preferred to inhalers by 70.7%, with 64.7% believing that inhalers were for the very sick. Only 36 (31%) felt preventer medications in asthma were necessary. Acceptance of asthma as a diagnosis and presence of asthma drugs were significantly associated with better knowledge of asthma, p-values 0.015 and 0.009 respectively.Conclusion: Most caregivers perceive syrups to be better despite having good basic knowledge on asthma. There is need to address asthma perceptions among caretakers in resource poor settings which is likely to improve control.  Keywords: Childhood asthma, care-takers, Western Kenya

A systematic review of measures of HIV/AIDS stigma in paediatric HIV-infected and HIV-affected populations

Introduction: HIV-related stigma impacts the quality of life and care management of HIV-infected and HIV-affected individuals, but how we measure stigma and its impact on children and adolescents has less often been described. Methods: We conducted a systematic review of studies that measured HIV-related stigma with a quantitative tool in paediatric HIV-infected and HIV-affected populations. Results and discussion: Varying measures have been used to assess stigma in paediatric populations, with most studies utilizing the full or variant form of the HIV Stigma Scale that has been validated in adult populations and utilized with paediatric populations in Africa, Asia and the United States. Other common measures included the Perceived Public Stigma Against Children Affected by HIV, primarily utilized and validated in China. Few studies implored item validation techniques with the population of interest, although scales were used in a different cultural context from the origin of the scale. Conclusions: Many stigma measures have been used to assess HIV stigma in paediatric populations, globally, but few have implored methods for cultural adaptation and content validity

Characteristics of HIV-infected adolescents enrolled in a disclosure intervention trial in western Kenya

Knowledge of one's own HIV status is essential for long-term disease management, but there are few data on how disclosure of HIV status to infected children and adolescents in sub-Saharan Africa is associated with clinical and psychosocial health outcomes. We conducted a detailed baseline assessment of the disclosure status, medication adherence, HIV stigma, depression, emotional and behavioral difficulties, and quality of life among a cohort of Kenyan children enrolled in an intervention study to promote disclosure of HIV status. Among 285 caregiver-child dyads enrolled in the study, children's mean age was 12.3 years. Caregivers were more likely to report that the child knew his/her diagnosis (41%) compared to self-reported disclosure by children (31%). Caregivers of disclosed children reported significantly more positive views about disclosure compared to caregivers of non-disclosed children, who expressed fears of disclosure related to the child being too young to understand (75%), potential psychological trauma for the child (64%), and stigma and discrimination if the child told others (56%). Overall, the vast majority of children scored within normal ranges on screenings for behavioral and emotional difficulties, depression, and quality of life, and did not differ by whether or not the child knew his/her HIV status. A number of factors were associated with a child's knowledge of his/her HIV diagnosis in multivariate regression, including older age (OR 1.8, 95% CI 1.5-2.1), better WHO disease stage (OR 2.5, 95% CI 1.4-4.4), and fewer reported caregiver-level adherence barriers (OR 1.9, 95% CI 1.1-3.4). While a minority of children in this cohort knew their HIV status and caregivers reported significant barriers to disclosure including fears about negative emotional impacts, we found that disclosure was not associated with worse psychosocial outcomes

Knowledge and perceptions on childhood asthma among care-takers of children with asthma at a National Referral Hospital in Western Kenya: a descriptive study

Background: Identifying knowledge gaps in asthma self-management and identifying existing myths is an important step in determining appropriate health education and demystifying the myths so as to enhance asthma control. Objective: To identify existing knowledge gaps and perceptions among the caregivers of asthmatic children. Methods: A cross sectional study was done among caretakers of asthmatic children aged 6-11 years at Moi Teaching and Referral Hospital. Data on knowledge and perceptions among caretakers was collected using a questionnaire. Results: A total of 116 caretakers were recruited of whom 71.6% were mothers. Although 60% of the caretakers had asthma medications at home, only a third felt their children were asthmatic. Eighty four (72.4%) had basic asthma knowledge. Syrups were preferred to inhalers by 70.7%, with 64.7% believing that inhalers were for the very sick. Only 36 (31%) felt preventer medications in asthma were necessary. Acceptance of asthma as a diagnosis and presence of asthma drugs were significantly associated with better knowledge of asthma, p-values 0.015 and 0.009 respectively. Conclusion: Most caregivers perceive syrups to be better despite having good basic knowledge on asthma. There is need to address asthma perceptions among caretakers in resource poor settings which is likely to improve control

Time to First-Line ART Failure and Time to Second-Line ART Switch in the IeDEA Pediatric Cohort

BACKGROUND: Globally, 49% of the estimated 1.8 million children living with HIV are accessing antiretroviral therapy (ART). There are limited data concerning long-term durability of first-line ART regimens and time to transition to second-line. METHODS: Children initiating their first ART regimen between 2 and 14 years of age and enrolled in one of 208 sites in 30 Asia-Pacific and African countries participating in the Pediatric International Epidemiology Databases to Evaluate AIDS consortium were included in this analysis. Outcomes of interest were: first-line ART failure (clinical, immunologic, or virologic), change to second-line, and attrition (death or loss to program ). Cumulative incidence was computed for first-line failure and second-line initiation, with attrition as a competing event. RESULTS: In 27,031 children, median age at ART initiation was 6.7 years. Median baseline CD4% for children ≤5 years of age was 13.2% and CD4 count for those >5 years was 258 cells per microliter. Almost all (94.4%) initiated a nonnucleoside reverse transcriptase inhibitor; 5.3% a protease inhibitor, and 0.3% a triple nucleoside reverse transcriptase inhibitor-based regimen. At 1 year, 7.7% had failed and 14.4% had experienced attrition; by 5 years, the cumulative incidence was 25.9% and 29.4%, respectively. At 1 year after ART failure, 13.7% had transitioned to second-line and 11.2% had experienced attrition; by 5 years, the cumulative incidence was 31.6% and 25.9%, respectively. CONCLUSIONS: High rates of first-line failure and attrition were identified in children within 5 years after ART initiation. Of children meeting failure criteria, only one-third were transitioned to second-line ART within 5 years

Regional trends in birth weight in low- and middle-income countries 2013-2018

Background: Birth weight (BW) is a strong predictor of neonatal outcomes. The purpose of this study was to compare BWs between global regions (south Asia, sub-Saharan Africa, Central America) prospectively and to determine if trends exist in BW over time using the population-based maternal and newborn registry (MNHR) of the Global Network for Women\u27sand Children\u27s Health Research (Global Network).Methods: The MNHR is a prospective observational population-based registryof six research sites participating in the Global Network (2013-2018), within five low- and middle-income countries (Kenya, Zambia, India, Pakistan, and Guatemala) in threeglobal regions (sub-Saharan Af rica, south Asia, Central America). The birth weights were obtained for all infants born during the study period. This was done either by abstracting from the infants\u27 health facility records or from direct measurement by the registry staff for infants born at home. After controlling for demographic characteristics, mixed-effect regression models were utilized to examine regional differences in birth weights over time.Results: The overall BW meanswere higher for the African sites (Zambia and Kenya), 3186 g (SD 463 g) in 2013 and 3149 g (SD 449 g) in 2018, ascompared to Asian sites (Belagavi and Nagpur, India and Pakistan), 2717 g (SD450 g) in 2013 and 2713 g (SD 452 g) in 2018. The Central American site (Guatemala) had a mean BW intermediate between the African and south Asian sites, 2928 g (SD 452) in 2013, and 2874 g (SD 448) in 2018. The low birth weight (LBW) incidence was highest in the south Asian sites (India and Pakistan) and lowest in the African sites (Kenya and Zambia). The size of regional differences varied somewhat over time with slight decreases in the gap in birth weights between the African and Asian sites and slight increases in the gap between the African and Central American sites.Conclusions: Overall, BWmeans by global region did not change significantly over the 5-year study period. From 2013 to 2018, infants enrolled at the African sites demonstrated the highest BW means overall across the entire study period, particularly as compared to Asian sites. The incidence of LBW was highest in the Asian sites (India and Pakistan) compared to the African and Central American sites. Trial registration The study is registered at clinicaltrials.gov. ClinicalTrial.gov Trial Registration: NCT01073475

Trends and determinants of stillbirth in developing countries: results from the Global Network\u27s Population-Based Birth Registry.

BACKGROUND: Stillbirth rates remain high, especially in low and middle-income countries, where rates are 25 per 1000, ten-fold higher than in high-income countries. The United Nations\u27 Every Newborn Action Plan has set a goal of 12 stillbirths per 1000 births by 2030 for all countries. METHODS: From a population-based pregnancy outcome registry, including data from 2010 to 2016 from two sites each in Africa (Zambia and Kenya) and India (Nagpur and Belagavi), as well as sites in Pakistan and Guatemala, we evaluated the stillbirth rates and rates of annual decline as well as risk factors for 427,111 births of which 12,181 were stillbirths. RESULTS: The mean stillbirth rates for the sites were 21.3 per 1000 births for Africa, 25.3 per 1000 births for India, 56.9 per 1000 births for Pakistan and 19.9 per 1000 births for Guatemala. From 2010 to 2016, across all sites, the mean stillbirth rate declined from 31.7 per 1000 births to 26.4 per 1000 births for an average annual decline of 3.0%. Risk factors for stillbirth were similar across the sites and included maternal age \u3c 20 years and age \u3e 35 years. Compared to parity 1-2, zero parity and parity \u3e 3 were both associated with increased stillbirth risk and compared to women with any prenatal care, women with no prenatal care had significantly increased risk of stillbirth in all sites. CONCLUSIONS: At the current rates of decline, stillbirth rates in these sites will not reach the Every Newborn Action Plan goal of 12 per 1000 births by 2030. More attention to the risk factors and treating the causes of stillbirths will be required to reach the Every Newborn Action Plan goal of stillbirth reduction. TRIAL REGISTRATION: NCT01073475

‘Why did you not tell me?’: perspectives of caregivers and children on the social environment surrounding child HIV disclosure in Kenya

Objective: We sought to better understand how social factors shape HIV disclosure to children from the perspective of caregivers and HIV-infected children in Kenya. Design: We conducted a qualitative study using focus group discussions (FGDs) to gain perspectives of caregivers and children on the social environment for HIV disclosure to children in western Kenya. FGDs were held with caregivers who had disclosed the HIV status to their child and those who had not, and with HIV-infected children who knew their HIV status. Methods: FGD transcripts were translated into English, transcribed, and analyzed using constant comparison, progressive coding, and triangulation to arrive at a contextualized understanding of social factors influencing HIV disclosure. Results: Sixty-one caregivers of HIV-infected children participated in eight FGDs, and 23 HIV-infected children participated in three FGDs. Decisions around disclosure were shaped by a complex social environment that included the caregiver-child dyad, family members, neighbors, friends, schools, churches, and media. Whether social actors demonstrated support or espoused negative beliefs influenced caregiver decisions to disclose. Caregivers reported that HIV-related stigma was prominent across these domains, including stereotypes associating HIV with sexual promiscuity, immorality, and death, which were tied to caregiver fears about disclosure. Children also recognized stigma as a barrier to disclosure, but were less specific about the social and cultural stereotypes cited by the caregivers. Conclusion: In this setting, caregivers and children described multiple actors who influenced disclosure, mostly due to stigmatizing beliefs about HIV. Better understanding the social factors impacting disclosure may improve the design of support services for children and caregivers

Community based weighing of newborns and use of mobile phones by village elders in rural settings in Kenya: a decentralised approach to health care provision

<p>Abstract</p> <p>Background</p> <p>Identifying every pregnancy, regardless of home or health facility delivery, is crucial to accurately estimating maternal and neonatal mortality. Furthermore, obtaining birth weights and other anthropometric measurements in rural settings in resource limited countries is a difficult challenge. Unfortunately for the majority of infants born outside of a health care facility, pregnancies are often not recorded and birth weights are not accurately known. Data from the initial 6 months of the Maternal and Neonatal Health (MNH) Registry Study of the Global Network for Women and Children's Health study area in Kenya revealed that up to 70% of newborns did not have exact weights measured and recorded by the end of the first week of life; nearly all of these infants were born outside health facilities.</p> <p>Methods</p> <p>To more completely obtain accurate birth weights for all infants, regardless of delivery site, village elders were engaged to assist in case finding for pregnancies and births. All elders were provided with weighing scales and mobile phones as tools to assist in subject enrollment and data recording. Subjects were instructed to bring the newborn infant to the home of the elder as soon as possible after birth for weight measurement.</p> <p>The proportion of pregnancies identified before delivery and the proportion of births with weights measured were compared before and after provision of weighing scales and mobile phones to village elders. Primary outcomes were the percent of infants with a measured birth weight (recorded within 7 days of birth) and the percent of women enrolled before delivery.</p> <p>Results</p> <p>The recorded birth weight increased from 43 ± 5.7% to 97 ± 1.1. The birth weight distributions between infants born and weighed in a health facility and those born at home and weighed by village elders were similar. In addition, a significant increase in the percent of subjects enrolled before delivery was found.</p> <p>Conclusions</p> <p>Pregnancy case finding and acquisition of birth weight information can be successfully shifted to the community level.</p