The usability of Jordan stillbirths and neonatal deaths surveillance (JSANDS) system: results of focus group discussions.
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ABSTRACT: Background
Jordan Stillbirths and Neonatal Deaths Surveillance system (JSANDS) is a newly developed system and is currently implemented in five large hospitals in Jordan. This study aimed at exploring the healthcare professionals' perception about the usability of JSANDS.Methods
A descriptive qualitative approach, using focus group discussions, was adopted. A total of 5 focus groups including 23 focal points were conducted in five participating hospitals in Jordan.Results
Data analysis identified nine main issues related to the JSANDS system: the system usefulness, the system performance, data quality, the system limitations, human rights, female empowerment, nurses' competencies strengthened, the sustainability of the JSANDS, and COVID-19 impact on the system. Users reported that JSANDS data were useful, the system was simple and easy to use, and the data were accurate and complete. However, some users reported that some technical issues need to be enhanced.Conclusions
JSANDS was perceived positively by the current users. According to them, it provides a formative and comprehensive data on stillbirths and neonatal deaths and their causes, and therefore, was recommended to be adopted by its users and scaled up.
SUBMITTER: Khader YS
PROVIDER: S-EPMC7937354 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundWorldwide, an estimated 5.1 million stillbirths and neonatal deaths occur annually, 98% in low- and middle-income countries. Limited coverage of civil and vital registration systems necessitates reliance on women's retrospective reporting in household surveys for data on these deaths. The predominant platform, Demographic and Health Surveys (DHS), has evolved over the last 35 years and differs by country, yet no previous study has described these differences and the effects of these changes on stillbirth and neonatal death measurement.MethodsWe undertook a review of DHS model questionnaires, protocols and methodological reports from DHS-I to DHS-VII, focusing on the collection of information on stillbirth and neonatal deaths describing differences in approaches, questionnaires and geographic reach up to December 9, 2019. We analysed the resultant data, applied previously used data quality criteria including ratios of stillbirth rate (SBR) to neonatal mortality rate (NMR) and early NMR (ENMR) to NMR, comparing by country, over time and by DHS module.ResultsDHS has conducted >320 surveys in 90 countries since 1984. Two types of maternity history have been used: full birth history (FBH) and full pregnancy history (FPH). A FBH collecting information only on live births has been included in all model questionnaires to date, with data on stillbirths collected through a reproductive calendar (DHS II-VI) or using additional questions on non-live births (DHS-VII). FPH collecting information on all pregnancies including live births, miscarriages, abortions and stillbirths has been used in 17 countries. We found no evidence of variation in stillbirth data quality assessed by SBR:NMR over time for FBH surveys with reproductive calendar, some variation for surveys with FBH in DHS-VII and most variation among the surveys conducted with a FPH. ENMR:NMR ratio increased over time, which may reflect changes in data quality or real epidemiological change.ConclusionDHS remains the major data source for pregnancy outcomes worldwide. Although the DHS model questionnaire has evolved over the last three and half decades, more robust evidence is required concerning optimal methods to obtain accurate data on stillbirths and neonatal deaths through household surveys and also to develop and test standardised data quality criteria.
| S-EPMC7869207 | biostudies-literature
Project description:BACKGROUND:The quality of data obtained through Focus Group Discussions (FGDs) is highly dependent on appropriate design and facilitation. In low-income settings steep power gradients between researcher and participants, as well as conversational norms, could reduce the ability of participants to voice personal opinions. Activity-oriented exercises have been suggested as a way overcoming these challenges, however little evidence exists - to date - on their use in low-income settings. We selected six exercises for use in Ethiopia and Nigeria and report our experiences. METHODS:The six exercises (picture sorting, associative pictures, picture ranking, decision trees, predictive story-telling and provocative statements) were used in 32 maternal and new-born care themed FGDs conducted in Amhara and Southern Nations Nationalities and People's Regions (Ethiopia) and Gombe State (Nigeria). Six facilitators and two supervisors who used these exercises were interviewed about their experiences. FGD verbatim transcripts and interview notes were analysed to explore methodological effectiveness and respondents' experience. All data were coded in NVIVO using a deductive coding frame. RESULTS:Facilitators and participants described the methods as 'fun' and 'enjoyable'. The exercises yielded more in-depth and complete information than 'normal' FGDs, but facilitator's probing skills and overall FGD group dynamics proved crucial in this success. Explaining and conducting the exercises increased FGD length. Data richness, participant reaction and understanding, and ease of facilitation varied by study site, exercise, and participant group. Overall, the exercises worked better in Nigeria than in Ethiopia. The provocative statement exercise was most difficult for participants to understand, the decision-tree most difficult to facilitate and the picture exercises most enjoyable. The story telling exercise took relatively little time, was well understood, yielded rich data and reduced social desirability bias. DISCUSSION:The majority of the exercises proved successful tools in yielding richer and less biased information from FGDs and were experienced as fun and engaging. Tailoring of the exercises, as well as thorough training and selection of the facilitators, were pivotal in this success. The difference in the two countries shows that adequate piloting and adaptation is crucial, and that some exercises may not be adaptable to all settings.
| S-EPMC7706206 | biostudies-literature
Project description:BackgroundYounger generations actively use social media to access health information. However, research shows that they also avoid obtaining health information online at times when confronted with uncertainty.ObjectiveThis study aims to examine the phenomenon of health information avoidance among Generation Z, a representative cohort of active web users in this era.MethodsDrawing on the planned risk information avoidance model, we adopted a qualitative approach to explore the factors related to information avoidance within the context of health and risk communication. The researchers recruited 38 participants aged 16 to 25 years for the focus group discussion sessions.ResultsIn this study, we sought to perform a deductive qualitative analysis of the focus group interview content with open, focused, and theoretical coding. Our findings support several key components of the planned risk information avoidance model while highlighting the underlying influence of cognition on emotions. Specifically, socioculturally, group identity and social norms among peers lead some to avoid health information. Cognitively, mixed levels of risk perception, conflicting values, information overload, and low credibility of information sources elicited their information avoidance behaviors. Affectively, negative emotions such as anxiety, frustration, and the desire to stay positive contributed to avoidance.ConclusionsThis study has implications for understanding young users' information avoidance behaviors in both academia and practice.
| S-EPMC10960220 | biostudies-literature
Project description:Media guidelines on safe suicide-related reporting are within the suicide prevention armamentarium. However, implementation issues beleaguer real-world practice. This study evaluated the perspectives of the Malaysian media community, persons with lived experience of suicidal behavior (PLE), and mental health professionals (MHP) on suicide-related reporting in terms of the impact, strategies, challenges, and the implementation of guidelines on safe reporting. Three focus group discussions of purposively sampled Malaysian media practitioners (n = 8), PLE (n = 6), and MHP (n = 7) were audio-recorded, transcribed, coded and thematically analyzed. Inclusion criteria were: English fluency, no clinical depression or suicidal ideation (current), no recent previous suicide attempts or suicide bereavement. Three major themes emerged: (1) Unsafe Reporting; (2) Impact; and (3) Safe Reporting. Most described current reporting as unsafe by being potentially triggering to media users and may contribute to contagion effect. Positive impacts identified included raised awareness toward suicide and its prevention. Unsafe reporting was attributed to inadequate awareness, knowledge, and guidance, lack of empathy and accountability, job-related factors, popularity-seeking, lack of monitoring and governance, and information source(s) with unsafe content. Majority agreed on how suicide stories should be framed to produce a safe report. The media community diverged on how detailed a suicide story should be. Safe reporting challenges included difficulties in balancing beneficial versus harmful details, social media ubiquity and its citizen reporters. Participants suggested these safe reporting strategies: stakeholder engagement, educational approaches, improving governance and surveillance, and guidelines revision. Most acknowledged the relevance of guidelines but were unaware of the existence of local guidelines. Implementation challenges included the dilemma in balancing media industry needs vis-à-vis safe reporting requirements, stakeholder engagement difficulties and social media regulation. There is poor awareness regarding safe suicide-related reporting across all groups. PLE and MHP were negatively impacted by current unsafe messaging which aggravated trauma and grief reactions. Postvention support gaps for mental health professionals were highlighted. Safe reporting promotion strategies should include stakeholder engagement to increase awareness on minimizing Werther and maximizing Papageno effects. Strategic re-examination and dissemination of local media guidelines to address new media issues, and effective surveillance mechanisms, are crucial in sustainable improvement of safe reporting practices.
| S-EPMC8165722 | biostudies-literature
Project description:ObjectiveTo explore the experiences and perceptions of stillbirth among mothers from a tertiary medical centre in Kano, Northern Nigeria.DesignQualitative, interpretative.SettingTertiary healthcare facility, Murtala Muhammad Specialist Hospital (MMSH), Kano, Northern Nigeria.SampleMothers who had given birth to a liveborn baby at the MMSH in the prior 6 months (n = 31). In order to capture the experiences and perception of stillbirth within this cohort we approached mothers who had in a previous pregnancy experienced a stillbirth. Of the 31 who attended 16 had a previous stillbirth.MethodsSemi-structured Focus Group Discussions, consisting of open-ended questions about stillbirth, beliefs, experiences and influences were held in MMSH, conducted over 1 day.ResultsOur findings highlight that this is a resource-poor tertiary facility serving an ever-growing population, increasing strain on the hospital and healthcare workers. Many of the participants highlighted needing permission from certain family members before accessing healthcare or medical treatment. We identified that mothers generally have knowledge on self-care during pregnancy, yet certain societal factors prevented that from being their priority. Judgement and blame was a common theme, yet a complex area entwined with traditions, superstitions and the pressure to procreate with many mothers described being made to feel useless and worthless if they did not birth a live baby.ConclusionsAs access to healthcare becomes easier, there are certain traditions, family and social dynamics and beliefs which conflict with scientific knowledge and act as a major barrier to uptake of healthcare services. The findings highlight the need for investment in maternity care, appropriate health education and public enlightenment; they will help inform appropriate interventions aimed at reducing stigma around stillbirth and aide in educating mothers about the importance of appropriate health seeking behaviour. Stillbirths are occurring in this area of the world unnecessarily, globally there has been extensive research conducted on stillbirth prevention. This research has highlighted some of the areas which can be tackled by modifying existing successful interventions to work towards reducing preventable stillbirths.
| S-EPMC8670111 | biostudies-literature
Project description:Background:Under-five and maternal mortality were halved in the Millennium Development Goals (MDG) era, with slower reductions for 2.6 million neonatal deaths and 2.6 million stillbirths. The Every Newborn Action Plan aims to accelerate progress towards national targets, and includes an ambitious Measurement Improvement Roadmap. Population-based household surveys, notably Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Surveys, are major sources of population-level data on child mortality in countries with weaker civil registration and vital statistics systems, where over two-thirds of global child deaths occur. To estimate neonatal/child mortality and pregnancy outcomes (stillbirths, miscarriages, birthweight, gestational age) the most common direct methods are: (1) the standard DHS-7 with Full Birth History with additional questions on pregnancy losses in the past 5 years (FBH+) or (2) a Full Pregnancy History (FPH). No direct comparison of these two methods has been undertaken, although descriptive analyses suggest that the FBH+ may underestimate mortality rates particularly for stillbirths. Methods:This is the protocol paper for the Every Newborn-INDEPTH study (INDEPTH Network, International Network for the Demographic Evaluation of Populations and their Health Every Newborn, Every Newborn Action Plan), aiming to undertake a randomised comparison of FBH+ and FPH to measure pregnancy outcomes in a household survey in five selected INDEPTH Network sites in Africa and South Asia (Bandim in urban and rural Guinea-Bissau; Dabat in Ethiopia; IgangaMayuge in Uganda; Kintampo in Ghana; Matlab in Bangladesh). The survey will reach >68 000 pregnancies to assess if there is ≥15% difference in stillbirth rates. Additional questions will capture birthweight, gestational age, birth/death certification, termination of pregnancy and fertility intentions. The World Bank's Survey Solutions platform will be tailored for data collection, including recording paradata to evaluate timing. A mixed methods assessment of barriers and enablers to reporting of pregnancy and adverse pregnancy outcomes will be undertaken. Conclusions:This large-scale study is the first randomised comparison of these two methods to capture pregnancy outcomes. Results are expected to inform the evidence base for survey methodology, especially in DHS, regarding capture of stillbirths and other outcomes, notably neonatal deaths, abortions (spontaneous and induced), birthweight and gestational age. In addition, this study will inform strategies to improve health and demographic surveillance capture of neonatal/child mortality and pregnancy outcomes.
| S-EPMC6377797 | biostudies-other
Project description:BACKGROUND:Deceased donor organs are scarce resources because of a large supply-and-demand mismatch. This scarcity leads to an ethical dilemma, forcing priority-setting of how these organs should be allocated and whom to leave behind. OBJECTIVE:To explore public preferences for the allocation of donor organs in regard to ethical aspects of distributive justice. METHODS:Focus groups were facilitated between November and December 2018 at Hannover Medical School. Participants were recruited locally. Transcripts were assessed with content analysis using the deductive framework method. All identified and discussed criteria were grouped according to the principles of distributive justice and reported following the COREQ statement. RESULTS:Six focus groups with 31 participants were conducted. Overall, no group made a final decision of how to allocate donor organ; however, we observed that not only a single criterion/principle but rather a combination of criteria/principles is relevant. Therefore, the public wants to allocate organs to save as many lives as possible by both maximizing success for and also giving priority to urgent patients considering the best compatibility. Age, waiting time, reciprocity and healthy lifestyles should be used as additional criteria, while sex, financial status and family responsibility should not, based on aspects of equality. CONCLUSIONS:All participants recognized the dilemma that prioritizing one patient might cause another one to die. They discussed mainly the unclear trade-offs between effectiveness/benefit and medical urgency and did not establish an agreement about their importance. The results suggest a need of preference studies to elucidate public preferences in organ allocation.
| S-EPMC7321724 | biostudies-literature
Project description:IntroductionNeonatal deaths and stillbirths are significant public health concerns in Pakistan, with an estimated stillbirth rate of 43 per 1,000 births and a neonatal mortality rate of 46 deaths per 1,000 live births. Limited access to obstetric care, poor health seeking behaviors and lack of quality healthcare are the leading root causes for stillbirths and neonatal deaths. Rehri Goth, a coastal slum in Karachi, faces even greater challenges due to extreme poverty, and inadequate infrastructure. This study aims to investigate the causes and pathways leading to stillbirths and neonatal deaths in Rehri Goth to develop effective maternal and child health interventions.MethodsA mixed-method cohort study was nested with the implementation of large maternal, neonatal and child health program, captured all stillbirths and neonatal death during the period of May 2014 till June 2018. The Verbal and Social Autopsy (VASA) tool (WHO 2016) was used to collect primary data from all death events to determine the causes as well as the pathways. Interviews were conducted both retrospectively and prospectively with mothers and caregivers. Two trained physicians reviewed the VASA form and the medical records (if available) and coded the cause of death blinded to each other. Descriptive analysis was used to categorize stillbirth and neonatal mortality data into high- and low-mortality clusters, followed by chi-square tests to explore associations between categories, and concluded with a qualitative analysis.ResultsOut of 421 events captured, complete VASA interviews were conducted for 317 cases. The leading causes of antepartum stillbirths were pregnancy-induced hypertension (22.4%) and maternal infections (13.4%), while obstructed labor was the primary cause of intrapartum stillbirths (38.3%). Neonatal deaths were primarily caused by perinatal asphyxia (36.1%) and preterm birth complications (27.8%). The qualitative analysis on a subset of 40 death events showed that health system (62.5%) and community factors (37.5%) contributing to adverse outcomes, such as delayed referrals, poor triage systems, suboptimal quality of care, and delayed care-seeking behaviors.ConclusionThe study provides an opportunity to understand the causes of stillbirths and neonatal deaths in one of the impoverished slums of Karachi. The data segregation by clusters as well as triangulation with qualitative analysis highlight the needs of evidence-based strategies for maternal and child health interventions in disadvantaged communities.
| S-EPMC10997060 | biostudies-literature
Project description:BackgroundIn developing medical research, particularly in regions where medical research is largely unfamiliar, it is important to understand public perceptions and attitudes towards medical research. In preparation for starting the first cohort study in the United Arab Emirates, the Abu Dhabi Cohort Study (ADCS), we sought to understand how we could improve the quality of the research process for participants and increase public trust and awareness of research.MethodsWe conducted six focus groups (FG), consisting of Emirati men and women aged above 18 years to resemble the target population for the ADCS. Sampling was purposive and convenient. Data collection was an iterative process until saturation was reached with no new themes identified. Text from each FG was analyzed separately by identifying emerging issues and organizing related concepts into categories or themes. A coding tree was developed, consisting of the main concepts, themes, subthemes and corresponding quotes. Both themes and main ideas were identified using inductive analysis.ResultsForty-two participants enrolled at 3 academic centers (New York University Abu Dhabi, UAE University, Zayed University) and the Abu Dhabi blood bank. Focus group participants described lack of awareness of research as a challenge to participation in clinical research studies. Altruism, personal relevance of the research, and the use of role models were commonly identified motivators. Participants were generally satisfied with the informed consent process for the ADCS, but would be disappointed if not provided test results or study outcomes. Fear of a breach in confidentiality was a frequently expressed concern.ConclusionsParticipants join research studies for varied, complex reasons, notably altruism and personal relevance. Based on these insights, we propose specific actions to enhance participant recruitment, retention and satisfaction in the ADCS. We identified opportunities to improve the research experience through improved study materials and communication to participants and the broader community.
| S-EPMC4778844 | biostudies-literature
Project description:Online focus group discussions provide an anonymous environment to assess sensitive, health-related experiences that may be difficult to discuss utilizing traditional face-to-face modalities, particularly for marginalized populations such as female-to-male trans masculine (TM) transgender individuals. This article reviews the history, advantages, and disadvantages of online focus groups, with an emphasis for research about sensitive issues with stigmatized, rare, and/or geographically dispersed patient populations. The article then evaluates the success of online focus group discussions as a case study using data from four asynchronous online focus groups conducted between September 2015 and February 2016 that explored topics related to sexual health care access with U.S. TM adults ( N = 29). The rationale for selecting an asynchronous online methodology is described along with the unique methodological considerations that emerged in developing the study protocol. We conclude by sharing lessons learned, including innovations for maximizing participant engagement and comfort to elicit rich qualitative data.
| S-EPMC5758419 | biostudies-literature