Participatory Approach to Develop Evidence-Based Clinical Ethics Guidelines for the Care of COVID-19 Patients: A Mixed Method Study From Nepal
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SUBMITTER: Bhattarai S
PROVIDER: S-EPMC9272001 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:OBJECTIVE:The general purpose for ethics consultations is to deliberate on issues on medical and scientific research and act towards the safeguard of the patient's rights and dignity. With the implementation of European Union (EU) Regulation 536/2014 on clinical trials and cost and time-optimization, the nature of consultations and the bodies they are carried out might be to some extent affected. Accordingly, we sought to gain an updated perspective on the current role and current practices of ethics consultations nationwide in both clinical and research settings. METHODS:The study was carried forth by a three-step mixed-method approach: i) review of policies/regulations for ethics committee (EC) nationwide; ii) a structured survey on ethics consultation activity completed by each EC during 2016; iii) incorporated into the third part, a qualitative assessment with a selected sample of 8 key-informants for a semi-structured interview, discussing EC history, the ethics consultation function, and the professional experience of consultants. RESULTS:Review of the policies/regulations promoted by ECs showed that 72,6% (n = 69) of all the ECs (N = 95) being actually capable of providing ethics consultation service by policy. 71 ECs (74.7%) responded to the survey on ethics consultation requests; among them, 48 (67.6%) provided ethics consultations of which 23 (23/48) actually received requests for this service in the year 2016. Many ECs did not have a structured database in place to provide precise figures of requests received in the last year nor of their contents. CONCLUSION:To date, ethics consultation in clinical and research practice is largely underappreciated and not well understood by users. The consultants themselves lack a comprehensive vision of work carried out in their field, and bioethics training programs to keep them updated. Despite clinical ethics consultation services should not necessarily be mandatory, following the recent EU Regulation on clinical trials, institutional ethics consultation bodies should be re-evaluated.
| S-EPMC6936824 | biostudies-literature
Project description:BackgroundLimited qualitative data exist on the symptoms and impacts of spinal muscular atrophy (SMA) experienced by ambulant individuals. An ambulant module of the SMA Independence Scale (SMAIS) was developed to quantify the assistance required to perform everyday mobility-related activities.ObjectiveThe objective of this study was to develop a patient-centered module that provides key insights into what constitutes independence for ambulant and near-ambulant individuals with SMA.MethodsA stepwise, mixed-method approach was used. Semi-structured interviews were conducted in three waves with individuals with SMA and caregivers of children with SMA who were ambulant or near-ambulant (can walk ≥5 steps with support). Wave 1 interviews (n = 20) focused on concept elicitation. Wave 2 and 3 interviews (n = 15, both) involved completion and cognitive debriefing of items generated based on Wave 1 interviews. Therapeutic area experts were consulted throughout all key steps of the study. In particular, feedback was provided for item refinement and response option decisions. A macro-level preliminary, exploratory analysis, using Rasch Measurement Theory (RMT), provided insight on measurement properties.ResultsWave 1 resulted in 42 mobility and 11 instrumental activity of daily living (iADL) items. During Wave 2, participants defined independence as completing a task with supportive aids but without help from another person, leading to item refinement and modifications to the response scale. Lack of conceptual relevance and ceiling effects led to the removal of all iADL items after Wave 2, and 41 mobility items were tested in Wave 3. Final exploratory RMT and item refinement to reduce overlap led to a 27-item set related to mobility tasks.ConclusionsOur study provides preliminary support for using the 27-item SMAIS-Ambulatory Module for ambulant or near-ambulant individuals with SMA. Larger-scale analyses to further assess the psychometric properties of the scale are warranted.
| S-EPMC10657657 | biostudies-literature
Project description:BackgroundIt can be suspected that work in child care facilities is associated with an elevated exposure risk towards SARS-CoV-2 infections. It is still unclear under which conditions employees in those facilities can safely pursue their work. Preventive workplace-related measures to reduce transmission dynamics in this work environment need to be developed. These measures need to build on a solid scientific foundation and be ready for practical use at the same time. Therefore, the aim of the study is to present a participatory approach to identify, minimize, and eliminate workplace-specific COVID-19 transmission within child care. The approach presented combines quantitative as well as qualitative elements and includes a screening of critical workplace conditions and the development of preventive measures to foster a safe workplace design.MethodsFirst, 428 employees of different child care facilities in a large German city reported their subjective risk of infection, fear of infection, and support received by the employer. Second, the participants commented in detail about high risk conditions during work. Third, employees provided suggestions for preventive measures. We conducted a qualitative analysis of free text answers to evaluate which aspects are perceived as critical from an employee perspective.ResultsParticipants provided valuable and practicable ideas on how to design and improve preventive measures to reduce COVID-19 transmission in child care dealing with structural conditions, the interaction with the parents, the implementation of preventive measures and recommendations for policy makers.ConclusionsThese new insights help to organize pandemic risk management in order to align theoretical based measures with the practical realization. We encourage researchers to adapt the approach presented to other work areas in order to foster participation of employees in work design to reduce COVID-19 transmission.
| S-EPMC8278174 | biostudies-literature
Project description:BackgroundSeveral tools have been developed for health care professionals to monitor the physical activity of their patients, but most of these tools have been considering only the needs of users in North American and European countries and applicable for only specific analytic tasks. To our knowledge, no research study has utilized the participatory design (PD) approach in the Middle East region to develop such tools, involving all the stakeholders in the product development phases, and no clear use cases have been derived from such studies that could serve future development in the field.ObjectiveThis study aims to develop an interactive visualization tool (ActiVis) to support local health care professionals in monitoring the physical activity of their patients measured through wearable sensors, with the overall objective of improving the health of the Qatari population.MethodsWe used PD and user-centered design methodologies to develop ActiVis, including persona development, brainwriting, and heuristic walkthrough as part of user evaluation workshops; and use cases, heuristic walkthrough, interface walkthrough, and survey as part of expert evaluation sessions.ResultsWe derived and validated 6 data analysis use cases targeted at specific health care professionals from a collaborative design workshop and an expert user study. These use cases led to improving the design of the ActiVis tool to support the monitoring of patients' physical activity by nurses and family doctors. The ActiVis research prototype (RP) compared favorably with the Fitbit Dashboard, showing the importance of design tools specific to end users' needs rather than relying on repurposing existing tools designed for other types of users. The use cases we derived happen to be culturally agnostic, despite our assumption that the local Muslim and Arabic culture could impact the design of such visualization tools. At last, taking a step back, we reflect on running collaborative design sessions in a multicultural environment and oil-based economy.ConclusionsBeyond the development of the ActiVis tool, this study can serve other visualization and human-computer interaction designers in the region to prepare their design projects and encourage health care professionals to engage with designers and engineers to improve the tools they use for supporting their daily routine. The development of the ActiVis tool for nurses, and other visualization tools specific to family doctors and clinician researchers, is still ongoing and we plan to integrate them into an operational platform for health care professionals in Qatar in the near future.
| S-EPMC9034423 | biostudies-literature
Project description:INTRODUCTION:Accelerating progress in reducing child deaths is needed in order to achieve the Sustainable Development Goal child mortality target. This will require a focus on vulnerable children-including young children, those who are undernourished or with acute illnesses requiring hospitalization. Improving adherence to inpatient guidelines may be an important strategy to reduce child mortality, including among the most vulnerable. The aim of our assessment of nine sub-Saharan African and South Asian hospitals was to determine adherence to pediatric inpatient care recommendations, in addition to capacity for and barriers to implementation of guideline-adherent care prior to commencing the Childhood Acute Illness and Nutrition (CHAIN) Cohort study. The CHAIN Cohort study aims to identify modifiable risk factors for poor inpatient and post discharge outcomes above and beyond implementation of guidelines. METHODS:Hospital infrastructure, staffing, durable equipment, and consumable supplies such as medicines and laboratory reagents, were evaluated through observation and key informant interviews. Inpatient medical records of 2-23 month old children were assessed for adherence to national and international guidelines. The records of children with severe acute malnutrition (SAM) were oversampled to reflect the CHAIN study population. Seven core adherence indicators were examined: oximetry and oxygen therapy, fluids, anemia diagnosis and transfusion, antibiotics, malaria testing and antimalarials, nutritional assessment and management, and HIV testing. RESULTS:All sites had facilities and equipment necessary to implement care consistent with World Health Organization and national guidelines. However, stockouts of essential medicines and laboratory reagents were reported to be common at some sites, even though they were mostly present during the assessment visits. Doctor and nurse to patient ratios varied widely. We reviewed the notes of 261 children with admission diagnoses of sepsis (17), malaria (47), pneumonia (70), diarrhea (106), and SAM (119); 115 had multiple diagnoses. Adherence to oxygen therapy, antimalarial, and malnutrition refeeding guidelines was >75%. Appropriate antimicrobials were prescribed for 75% of antibiotic-indicative conditions. However, 20/23 (87%) diarrhea and 20/27 (74%) malaria cases without a documented indication were prescribed antibiotics. Only 23/122 (19%) with hemoglobin levels meeting anemia criteria had recorded anemia diagnoses. HIV test results were infrequently documented even at hospitals with universal screening policies (66/173, 38%). Informants at all sites attributed inconsistent guideline implementation to inadequate staffing. CONCLUSION:Assessed hospitals had the infrastructure and equipment to implement guideline-consistent care. While fluids, appropriate antimalarials and antibiotics, and malnutrition refeeding adherence was comparable to published estimates from low- and high-resource settings, there were inconsistencies in implementation of some other recommendations. Stockouts of essential therapeutics and laboratory reagents were a noted barrier, but facility staff perceived inadequate human resources as the primary constraint to consistent guideline implementation.
| S-EPMC6433255 | biostudies-literature
Project description:OBJECTIVE:This study sought to understand caregivers' (CGs') responses to early cleft lip/palate care for their infants. METHOD:A prospective, mixed methods multicenter longitudinal study was conducted among CGs (N = 118) seeking treatment for their infants' cleft lip and palate or cleft lip only at 1 of 6 cleft treatment centers in the United States. Participants were in 1 of 2 treatment groups: traditional care only or nasoalveolar molding (NAM) plus traditional care. The CGs completed semistructured interviews and standardized questionnaires assessing psychosocial well-being and family impact at 3 time points: the beginning of treatment (?1 month of age), prelip surgery (?3-5 months of age), and postpalate surgery (?12-13 months of age). Multilevel modeling was used to longitudinally assess CGs' psychosocial outcomes. RESULTS:Although the first year was demanding for all CGs, NAM onset and the child's lip surgery were particularly stressful times. CGs used optimism, problem-solving behavior, and social support to cope with this stress. Qualitatively, CGs' ability to balance cleft treatment demands with their psychosocial resources and coping strategies influenced family adaptation. Qualitative and quantitative results indicated CGs of NAM-treated infants experienced more rapid declines in anxiety and depressive symptoms and better coping skills over time than CGs whose infants had traditional care. CONCLUSION:CGs of NAM-treated infants experienced more positive psychosocial outcomes than CGs whose infants had traditional care. Results from the mixed model support the family adjustment and adaptation response model as used in pediatric chronic condition research.
| S-EPMC4757521 | biostudies-literature
Project description:BackgroundThe evidence-based interventions of exercise and education have been strongly recommended as part of prominent clinical guidelines for hip and knee osteoarthritis (OA) for more than ten years. Despite the wealth of strong evidence that exists, implementation in practice is sub-optimal. This paper describes the key methodologies used in the co-design, tailoring, and evaluation of the IMPACT project implementation strategies, to confront this problem across multiple levels (micro, meso, macro) in public and private healthcare settings in Ireland.MethodsUsing a type III hybrid implementation-effectiveness design, a participatory, dynamic and iterative process will be used to tailor and evaluate multi-level implementation strategies using the following stages: 1) Co-design the implementation strategies with key stakeholders using best evidence, a theory-driven implementation framework (Consolidated Framework for Implementation Research), local context and expert consensus; 2) Pilot and evaluate the implementation strategies by training physiotherapists to deliver the evidence-based Good Life with osteoArthritis Denmark (GLA:D®) education and exercise programme using the implementation strategies, and conduct a mixed-methods process evaluation; 3) Adapt the implementation strategies based on implementation process evaluation indicators from stage two. The adapted strategies will be used for scale-up and sustainability in subsequent GLA:D® Ireland training programmes that will be rolled out nationally. Evaluation of effectiveness on patient and cost outcomes will continue up to 12 months post-programme delivery, using an online patient registry and pre-post design.DiscussionThis implementation science project aims to use participatory health research to address a gap in management of OA across public and private healthcare settings. This research has the potential to change practice and promote a policy of exercise and physical activity referral for chronic musculoskeletal disease that utilises community engagement effectively and enacts change 'together', with involvement of researchers, decision-makers, clinicians and patients.
| S-EPMC9254615 | biostudies-literature
Project description:IntroductionHIV self-testing (HIVST) is a novel approach designed to assist in achieving the goal of at least 90% of the population that learn their HIV status. A self-test user with a positive test is required to visit a clinic to link into HIV care, yet little is known about patient preferences for linkage strategies. We examined the intention to link to care amongst potential HIVST users and the suitability of three linkage to care strategies in Lusaka Province, Zambia.MethodsWe conducted a representative cross sectional survey of 1,617 individuals aged 16-49 years old in Lusaka Province. Participants were shown a video of the HIVST. Data on intention to link to care and preferred linkage to care strategies-text message, phone call and home visits were collected. Eight focus group discussions were held concurrently with survey respondents to understand their preferences between the three linkage to care strategies.ResultsOf 1617 enrolled, 60% were women, 40% were men, with an average age of 27years (IQR = 22, 35). More men than women had at least secondary education (84% vs 77%) and were either employed or self-employed (67% vs. 41%). 85% (95%CI = 83 to 86) of participants said they would link to care within the first week of a positive self-test. Income >2,000 Kwacha (USD 200) per month versus income < 2,000 Kwacha (Adjusted odds ratio (AOR) = 0.59; 95%CI: 0.40 to 0.88; p = 0.009) and never versus prior HIV testers (AOR = 0.54; 95%CI: 0.32 to 0.91; p = 0.020) were associated with reduced odds of intention to link to care. 53% (95%CI = 50 to 55) preferred being prompted to link to care by home visits compared to phone call (30%) or SMS (17%).ConclusionWe found almost nine out of ten potential HIVST users in the general population intend to link to care shortly after a positive test, and preferred home visits or phone calls to facilitate linkage, rather than SMS. Also, higher income earners and those who never tested for HIV were associated with reduced odds of intention to link to care. Policy guidelines and implementation strategies for HIVST should be responsive to patient preferences for linkage to care strategies to achieve the continuum of HIV care.
| S-EPMC5693414 | biostudies-literature
Project description:INTRODUCTION:We implemented a participatory quality improvement strategy in eight primary health care units of Ethiopia to improve use and quality of maternal and newborn health services. METHODS:We evaluated the effects of this strategy using mixed-methods research. We used before-and-after (March 2016 and November 2017) cross-sectional surveys of women who had children 0-11 months to compare changes in maternal and newborn health care indicators in the 39 communities that received the intervention and the 148 communities that did not. We used propensity scores to match the intervention with the comparison communities at baseline and difference-in-difference analyses to estimate intervention effects. The qualitative method included 51 in-depth interviews of community volunteers, health extension workers, health center directors and staff, and project specialists. RESULTS:The difference-in-difference analyses indicated that 7.9 percentage points (95% confidence interval [CI]: 1.8-13.9%) increase in receiving skilled delivery care between baseline and follow-up surveys in the intervention area that is attributable to the strategy. The intervention effect on postnatal care in 48 hours of the mother was 15.3% (95% CI: 7.4-23.2). However, there was no evidence that the strategy affected the seven other maternal and newborn health care indicators considered. Interview participants said that the participatory design and implementation strategy helped them to realize gaps, identify real problems, and design appropriate solutions, and created a sense of ownership and shared responsibility for implementing interventions. CONCLUSIONS:Community participation in planning and monitoring maternal and newborn health service delivery improves use of some high-impact maternal and newborn health services. The study supports the notion that participatory community strategies should be considered to foster community-responsive health systems.
| S-EPMC7001957 | biostudies-literature
Project description:BackgroundGlobally in 2017 neonatal death accounted for 46% of under-five deaths. Nepal is among the developing countries which has a high number of neonatal deaths. The rates are high among poor socio-economic groups, marginalized, as well as people living in remote areas of Nepal. This paper, thus tries to examine the utilization pattern and maternal, household, and health service factors affecting underprivileged ethnic groups in Midwest Nepal.MethodsA cross-sectional mixed method study was conducted from September 2017 to April 2018 in Bardiya district. Quantitative data were collected from a household survey of women who gave live births within the last 12?months prior to data collection (n =?362). Interviews were also undertaken with 10 purposively selected key informants. Logistic regression model was used to determine the factors associated with essential neonatal care utilization. Thematic analysis was undertaken on the qualitative data.ResultsOverall, neonatal care utilization was 58.6% (53.3-63.7%), with big variations seen in the coverage of selected neonatal care components. Factors such as birth order (2.059, 1.13-3.75), ethnicity (2.28, 1.33-3.91), religion (2.37, 1.03-5.46), perceived quality of maternal and neonatal services (2.66, 1.61-4.39) and awareness on immediate essential newborn cares (2.22, 1.28-3.87) were identified as the determining factors of neonatal care utilization.ConclusionsThe coverage of birth preparedness and complication readiness, adequate breastfeeding, and postnatal care attendance were very low as compared to the national target for each component. The determinants of essential neonatal care existed at maternal, household as well as health facility level and included ethnicity, religion, perceived quality of maternal and neonatal services, birth order and awareness on immediate essential newborn care. Appropriate birth spacing, improving the quality of maternal and neonatal services at health facilities and raising mother's level of awareness about neonatal care practices are recommended.
| S-EPMC6712593 | biostudies-literature