Hope and trust in times of Zika: the views of caregivers and healthcare workers at the forefront of the epidemic in Brazil.
ABSTRACT: This article investigates how hope and trust played out for two groups at the forefront of the Zika epidemic: caregivers of children with congenital Zika syndrome and healthcare workers. We conducted 76 in-depth interviews with members of both groups to examine hope and trust in clinical settings, as well as trust in public institutions, in the health system and in the government of Brazil. During and after the Zika epidemic, hope and trust were important to manage uncertainty and risk, given the lack of scientific evidence about the neurological consequences of Zika virus infection. The capacity of healthcare workers and caregivers to trust and to co-create hope seems to have allowed relationships to develop that cushioned social impacts, reinforced adherence to therapeutics and enabled information flow. Hope facilitated parents to trust healthcare workers and interventions. Hope and trust appeared to be central in the establishment of support networks for caregivers. At the same time, mistrust in the government and state institutions may have allowed rumours and alternative explanations about Zika to spread. It may also have strengthened activism in mother's associations, which seemed to have both positive and negative implications for healthcare service delivery. The findings also point to distrust in international health actors and global health agenda, which can impact community engagement in future outbreak responses in Brazil and other countries in Latin America.
Project description:The Zika outbreak in Brazil caused congenital impairments and developmental delays, or Congenital Zika Syndrome (CZS). We sought to ascertain whether a family support programme was needed and, if so, could be adapted from the Getting to Know Cerebral Palsy programme (GTKCP) designed for children with cerebral palsy (CP). We conducted a systematic review of the needs of families of children with CZS or CP in low- and middle-income countries and reviewed the findings of the Social and Economic Impact of Zika study. We undertook a scoping visit to three facilities offering services to children with CZS in Brazil to understand potential utility and adaptability of GTKCP. The literature review showed that caregivers of children with CZS experience challenges in mental health, healthcare access, and quality of life, consistent with the CP literature. The scoping visits demonstrated that most support provided to families was medically orientated and while informal support networks were established, these lacked structure. Caregivers and practitioners expressed an eagerness for more structure community-based family support programmes. A support programme for families of children with CZS in Brazil appeared relevant and needed, and may fill an important gap in the Zika response.
Project description:The Zika virus outbreak in Brazil in 2015 affected thousands of people. Zika is now known to cause congenital malformations leading to impairments and developmental delays in affected children, including Congenital Zika Syndrome (CZS). Children with CZS have complex care needs. Caregivers require significant levels of support to meet these needs, and there are large gaps in healthcare services. This study aims to develop, pilot and assess the feasibility and scalability of a community-based Family Support Programme for caregivers of children with CZS. The programme is adapted from the Getting to Know Cerebral Palsy (GTKCP) programme for the context of CZS in Brazil. GTKCP is a 10-session programme held with 6-10 caregivers in the local community. It includes practical, educational, peer-support and psychosocial aspects, which aim to improve confidence and capacity to care for a child with CP, and quality of life and empowerment of caregivers. The research project contains four components: Ascertaining need for the caregiver programme: a mixed-methods approach that included two literature reviews, interviews with key stakeholders in country, and incorporation of findings from the Social and Economic Impact of Zika study.Adapting GTKCP for the context of CZS and Brazil: undertaken with guidance from technical experts.Pilot testing the intervention: deliver the 10-session programme to one group of caregivers of children with CZS in Rio de Janeiro and another in Greater Salvador.Update the manual through fast-track learning from participant and facilitator feedback. Assessing the feasibility of the intervention for scale up: deliver the updated programme to two groups each in Rio de Janeiro and Greater Salvador, and evaluate the acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited efficacy, through questionnaires, direct observation, semi-structured interviews and cost calculation. The project has ethics approval in both the UK and Brazil.
Project description:This study examined a knowledge-centered theory of institutional trust development. In the context of trust in water regulatory institutions, the moderating impact of knowledge was tested to determine if there were longitudinal changes in the bases of institutional trust as a function of increases in knowledge about a target institution. We hypothesized that as people learn about an institution with which they were previously unfamiliar, they begin to form more nuanced perceptions, distinguishing the new institution from other institutions and relying less upon their generalized trust to estimate their trust in that institution. Prior to having specific, differential information about a new institution, we expected institutional trust to be a function of generalized trust variables such as dispositional trust and trust in government. The longitudinal experiment involved 185 college students randomly assigned to one of three information conditions. Every 3 months for 15 months, participants read information about water regulatory institutions or a control institution. At each time point, participants reported their trust in and perceptions of the trust- and distrust-worthiness of the water regulatory institutions. Participants also completed measures of knowledge of water regulatory institutions, dispositional trust, and governmental trust. Our manipulation check indicated that, as expected, those in the experimental group increased in subjective knowledge of water regulatory institutions to a greater extent than those in the control condition. Consistent with our hypotheses, there was some evidence that, compared to the control group, the experimental group relied less on their general trust in government as a basis for their trust in water regulatory institutions. However, contrary to our hypotheses, there was no evidence the experimental group relied less on dispositional trust as a basis for institutional trust. There also was some evidence the experimental group's trust in water regulatory institutions was less affected by fluctuations of trustworthiness (but not distrustworthiness) perceptions over time. This suggests that knowledge results in the development of more stable institutional trust attitudes, but that trustworthiness and distrustworthiness perceptions may operate somewhat differently when impacting trust in specific institutions.
Project description:INTRODUCTION:Service users' involvement as cofacilitators of mental health trainings is a nascent endeavor in low- and middle-income countries, and the role of families on service user participation in trainings has received limited attention. This study examined how caregivers perceive and facilitate service user's involvement in an antistigma program that was added to mental health Gap Action Program (mhGAP) trainings for primary care workers in Nepal. METHOD:Service users were trained as cofacilitators for antistigma and mhGAP trainings delivered to primary care workers through the REducing Stigma among HealthcAre ProvidErs (RESHAPE) program. Key informant interviews (n = 17) were conducted with caregivers and service users in RESHAPE. RESULTS:Five themes emerged: (a) Caregivers' perceived benefits of service user involvement included reduced caregiver burden, learning new skills, and opportunities to develop support groups. (b) Caregivers' fear of worsening stigma impeded RESHAPE participation. (c) Lack of trust between caregivers and service users jeopardized participation, but it could be mitigated through family engagement with health workers. (d) Orientation provided to caregivers regarding RESHAPE needed greater attention, and when information was provided, it contributed to stigma reduction in families. (e) Time management impacted caregivers' ability to facilitate service user participation. DISCUSSION:Engagement with families allows for greater identification of motivational factors and barriers impacting optimal program performance. Caregiver involvement in all program elements should be considered best practice for service user-facilitated antistigma initiatives, and service users reluctant to include caregivers should be provided with health staff support to address barriers to including family. (PsycINFO Database Record
Project description:Do standard "trust in government" survey questions deliver measures which are reliable and equivalent in meaning across diverse regime types? I test for the measurement equivalence of political trust in a sample of 35 former Soviet and European countries using the 2010 Life in Transition Survey II conducted by the World Bank and European Bank for Reconstruction and Development. Employing multiple group confirmatory factor analysis, I find that trust perceptions in central political institutions differ from (1) trust in regional and local political institutions, (2) trust in protective institutions like the armed forces and police and (3) trust in order institutions like the courts and police. Four measurement models achieve partial metric invariance and two reach partial scalar invariance in most countries, allowing for comparisons of correlates using latent factors from each model. I also found some clustering of measurement error and variation in the dimensionality of political trust between democratic and autocratic portions of the sample. On some measurement parameters, therefore, respondents in diverse cultures and regime types do not have equivalent understandings of political trust. The findings offer both optimism and a note of caution for researchers using political trust measures in cross-regime contexts.
Project description:Using reliable information from routine health information systems over time is an important aid to improving health outcomes, tackling disparities, enhancing efficiency, and encouraging innovation. In Ethiopia, routine health information utilization for enhancing performance is poor among health workers, especially at the peripheral levels of health facilities. Therefore, this study aimed to assess routine health information system utilization and associated factors among health workers at government health institutions in East Gojjam Zone, Northwest Ethiopia.An institution based cross-sectional study was conducted at government health institutions of East Gojjam Zone, Northwest Ethiopia from April to May, 2013. A total of 668 health workers were selected from government health institutions, using the cluster sampling technique. Data collected using a standard structured and self-administered questionnaire and an observational checklist were cleaned, coded, and entered into Epi-info version 3.5.3, and transferred into SPSS version 20 for further statistical analysis. Variables with a p-value of less than 0.05 at multiple logistic regression analysis were considered statistically significant factors for the utilization of routine health information systems.The study revealed that 45.8% of the health workers had a good level of routine health information utilization. HMIS training [AOR = 2.72, 95% CI: 1.60, 4.62], good data analysis skills [AOR = 6.40, 95%CI: 3.93, 10.37], supervision [AOR = 2.60, 95% CI: 1.42, 4.75], regular feedback [AOR = 2.20, 95% CI: 1.38, 3.51], and favorable attitude towards health information utilization [AOR = 2.85, 95% CI: 1.78, 4.54] were found significantly associated with a good level of routine health information utilization.More than half of the health workers working at government health institutions of East Gojjam were poor health information users compared with the findings of others studies. HMIS training, data analysis skills, supervision, regular feedback, and favorable attitude were factors related to routine health information system utilization. Therefore, a comprehensive training, supportive supervision, and regular feedback are highly recommended for improving routine health information utilization among health workers at government health facilities.
Project description:OBJECTIVE: The dearth of age-appropriate formulations of many medicines for children poses a major challenge to pediatric therapeutic practice, adherence, and health care delivery worldwide. We provide information on current administration practices of pediatric medicines and describe key stakeholder preferences for new formulation characteristics. PATIENTS AND METHODS: We surveyed children aged 6-12 years, parents/caregivers over age 18 with children under age 12, and healthcare workers in 10 regions of Tanzania to determine current pediatric medicine prescription and administration practices as well as preferences for new formulations. Analyses were stratified by setting, pediatric age group, parent/caregiver education, and healthcare worker cadre. RESULTS: Complete data were available for 206 children, 202 parents/caregivers, and 202 healthcare workers. Swallowing oral solid dosage forms whole or crushing/dissolving them and mixing with water were the two most frequently reported methods of administration. Children frequently reported disliking medication taste, and many had vomited doses. Healthcare workers reported medicine availability most significantly influences prescribing practices. Most parents/caregivers and children prefer sweet-tasting medicine. Parents/caregivers and healthcare workers prefer oral liquid dosage forms for young children, and had similar thresholds for the maximum number of oral solid dosage forms children at different ages can take. CONCLUSIONS: There are many impediments to acceptable and accurate administration of medicines to children. Current practices are associated with poor tolerability and the potential for under- or over-dosing. Children, parents/caregivers, and healthcare workers in Tanzania have clear preferences for tastes and formulations, which should inform the development, manufacturing, and marketing of pediatric medications for resource-limited settings.
Project description:<h4>Background</h4>Postnatal care is an important link in the continuum of care for maternal and child health. However, coverage and quality of postnatal care are poor in low- and middle-income countries. In 2009, the Chinese government set a policy providing free postnatal care services to all mothers and their newborns in China. Our study aimed at exploring coverage, quality of care, reasons for not receiving and barriers to providing postnatal care after introduction of this new policy.<h4>Methods</h4>We carried out a mixed method study in Zhao County, Hebei Province, China from July to August 2011. To quantify the coverage, quality of care and reasons for not using postnatal care, we conducted a household survey with 1601 caregivers of children younger than two years of age. We also conducted semi-structured interviews with 24 township maternal and child healthcare workers to evaluate their views on workload, in-service training and barriers to postnatal home visits.<h4>Results</h4>Of 1442 (90% of surveyed caregivers) women who completed the postnatal care survey module, 8% received a timely postnatal home visit (within one week after delivery) and 24% of women received postnatal care within 42 days after delivery. Among women who received postnatal care, 37% received counseling or guidance on infant feeding and 32% on cord care. 24% of women reported that the service provider checked jaundice of their newborns and 18% were consulted on danger signs and thermal care of their newborns. Of 991 mothers who did not seek postnatal care within 42 days after birth, 65% of them said that they did not knew about postnatal care and 24% of them thought it was unnecessary. Qualitative findings revealed that staff shortages and inconvenient transportation limited maternal and child healthcare workers in reaching out to women at home. In addition, maternal and child healthcare workers said that in-service training was inadequate and more training on postnatal care, hands-on practice, and supervision were needed.<h4>Conclusions</h4>Coverage and quality of postnatal care were low in rural Hebei Province and far below the targets set by Chinese government. We identified barriers both from the supply and demand side.
Project description:The main goal of this paper is to study the effects of (1) trust in government medical experts and (2) proximity to a recent disease outbreak on vaccine propensity. More specifically, we explore how these variables affect attitudes with regards to measles. Using original survey data, collected in January/February 2017, we obtain three main empirical findings. First, contrary to our expectations, an individual's proximity to a recent measles outbreak has no independent effect on vaccination attitudes. Second, corroborating previous studies in the field, we find that trust in institutions such as the CDC has a positive effect on our dependent variable. Third, there is a significant interactive relationship between proximity and trust in governmental medical experts. While distance from a previous measles outbreak has no effect on vaccination attitudes for respondents with medium or high levels of trust, the variable exerts a negative effect for subjects with little confidence in government medical experts. In other words: low-trust individuals who live farther away from a recent measles outbreak harbor less favorable views about vaccination for this particular disease than low-trust respondents who live close to an affected area. This implies that citizens who are skeptical of the CDC and similar institutions base their vaccination decision-making to some degree on whether or not a given disease occurs in close vicinity to their community.
Project description:Institution-centered accounts of generalized trust rely on the idea that law-breaking and state's unfairness lower individuals' propensity to trust fellow citizens because of a weaker confidence in the state. Despite the theoretical relevance attributed to this mediation mechanism, no empirical analysis in the literature has focused on examining its correlational validity. Using data from the European Social Survey (2010), the Quality of Government EU Regional data, and EUROSTAT, this paper assesses the intervening role of institutional trust on the relationship between crime rates, state's fairness, and generalized trust. Results from a Multilevel SEM (MSEM) mediation analysis indicate that trust in institutions strongly mediates the relationship between violent crimes (i.e. homicide) and generalized trust but not the one between property crimes (i.e. vehicle thefts and robberies) and generalized trust. On the other hand, indicators of fairness (i.e. impartiality and corruption) are all mediated by institutional trust, though impartiality maintains a significant direct effect. Overall, findings support the institutional approach, confirming that the negative relationship between ineffective and unfair institutions and generalized trust passes mostly through people's lost faith in the state.