Improving Conversations about Parkinson's Dementia.

BACKGROUND: People with Parkinson's disease (PD) have an increased risk of dementia, yet patients and clinicians frequently avoid talking about it due to associated stigma, and the perception that "nothing can be done about it". However, open conversations about PD dementia may allow people with the condition to access treatment and support, and may increase participation in research aimed at understanding PD dementia. OBJECTIVES: To co-produce information resources for patients and healthcare professionals to improve conversations about PD dementia. METHODS: We worked with people with PD, engagement experts, artists, and a PD charity to open up these conversations. 34 participants (16 PD; 6 PD dementia; 1 Parkinsonism, 11 caregivers) attended creative workshops to examine fears about PD dementia and develop information resources. 25 PD experts contributed to the resources. RESULTS: While most people with PD (70%) and caregivers (81%) shared worries about cognitive changes prior to the workshops, only 38% and 30%, respectively, had raised these concerns with a healthcare professional. 91% of people with PD and 73% of caregivers agreed that PD clinicians should ask about cognitive changes routinely through direct questions and perform cognitive tests at clinic appointments. We used insights from the creative workshops, and input from a network of PD experts to co-develop two open-access resources: one for people with PD and their families, and one for healthcare professionals. CONCLUSION: Using artistic and creative workshops, co-learning and striving for diverse voices, we co-produced relevant resources for a wider audience to improve conversations about PD dementia.

Wales Infants' and childreN's Genome Service (WINGS): providing rapid genetic diagnoses for unwell children.

INTRODUCTION: This study reviews the first 3 years of delivery of the first National Health Service (NHS)-commissioned trio rapid whole genome sequencing (rWGS) service for acutely unwell infants and children in Wales. METHODS: Demographic and phenotypic data were prospectively collected as patients and their families were enrolled in the Wales Infants' and childreN's Genome Service (WINGS). These data were reviewed alongside trio rWGS results. RESULTS: From April 2020 to March 2023, 82 families underwent WINGS, with a diagnostic yield of 34.1%. The highest diagnostic yields were noted in skeletal dysplasias, neurological or metabolic phenotypes. Mean time to reporting was 9 days. CONCLUSION: This study demonstrates that trio rWGS is having a positive impact on the care of acutely unwell infants and children in an NHS setting. In particular, the study shows that rWGS can be applied in an NHS setting, achieving a diagnostic yield comparable with the previously published diagnostic yields achieved in research settings, while also helping to improve patient care and management.

Current State of Genomics in Nursing: A Scoping Review of Healthcare Provider Oriented (Clinical and Educational) Outcomes (2012-2022).

In the 20 years since the initial sequencing of the human genome, genomics has become increasingly relevant to nursing. We sought to chart the current state of genomics in nursing by conducting a systematic scoping review of the literature in four databases (2012-2022). The included articles were categorized according to the Cochrane Collaboration outcome domains/sub-domains, and thematic analysis was employed to identify key topical areas to summarize the state of the science. Of 8532 retrieved articles, we identified 232 eligible articles. The articles primarily reported descriptive studies from the United States and other high-income countries (191/232, 82%). More than half (126/232, 54.3%) aligned with the "healthcare provider oriented outcomes" outcome domain. Three times as many articles related to the "knowledge and understanding" sub-domain compared to the "consultation process" subdomain (96 vs. 30). Five key areas of focus were identified, including "nursing practice" (50/126, 40%), "genetic counseling and screening" (29/126, 23%), "specialist nursing" (21/126, 17%), "nurse preparatory education" (17/126, 13%), and "pharmacogenomics" (9/126, 7%). Only 42/126 (33%) articles reported interventional studies. To further integrate genomics into nursing, study findings indicate there is a need to move beyond descriptive work on knowledge and understanding to focus on interventional studies and implementation of genomics into nursing practice.

Acclimating Nursing Students After the Pandemic: "It's ASNAP!"

BACKGROUND: This article describes the development of a comprehensive pilot program, "It's ASNAP!" (Acclimating Nursing Students After the Pandemic). The program incorporated the academic, social, and emotional well-being of undergraduate nursing students returning to campus after the coronavirus disease 2019 (COVID-19) pandemic. METHOD: A purposeful sample of 488 students was recruited to participate via an anonymous survey on the academic, social, and emotional aspects of acclimating back to campus life. RESULTS: A total of 121 undergraduate nursing students responded to the survey. The majority of students reported study groups (79%) and de-stressing events (86%) were the most helpful as they acclimated back to campus. Compared with the emotional and social areas of support, the academic area of support was of highest interest to the students. CONCLUSION: The "It's ASNAP!" program has been acculturated into the school of nursing to support students via study halls, tutoring, and social activities, as well as resilient threads and listening sessions during finals week. [J Nurs Educ. 2023;62(9):516-518.].

Emerging Pathogenic Viral Infections of the Eye.

Global health security threats and the public health impact resulting from emerging infectious diseases including the ongoing COVID-19 pandemic and recent Ebola virus disease outbreaks continuously emphasize the need for a comprehensive approach to preparedness, management of disease outbreaks, and health sequelae associated with emergent pathogens. A spectrum of associated ophthalmic manifestations, along with the potential persistence of emerging viral pathogens in ocular tissues, highlight the importance of an ophthalmic approach to contributing to efforts in the response to public health emergencies from disease outbreaks. This article summarizes the ophthalmic and systemic findings, epidemiology, and therapeutics for emerging viral pathogens identified by the World Health Organization as high-priority pathogens with epidemic potential.

Visual acuity and vision-related quality of life outcomes following cataract surgery in Ebola virus disease survivors.

Objectives: The objectives of this study were to assess relationships between vision-related quality of life (QoL) and visual acuity (VA) in Ebola virus disease (EVD) survivors after cataract surgery in the Ebola Viral Persistence in Ocular Tissues and Fluids (EVICT) Study. Materials and Methods: EVD survivors with undetectable Ebola virus (EBOV) ribonucleic acid in their aqueous humour were eligible to receive manual small-incision cataract surgery (MSICS). Among those that received surgery, assessments of VA and vision-related QoL were assessed pre-and post-cataract surgery. VA was converted from units on a tumbling 'E' chart to the logarithm of the minimal angle of resolution VA (logMAR VA). Vision-related QoL was assessed using the 25-item National Eye Institute Visual Function Questionnaire (NEI VFQ-25). Linear regression was used to evaluate the associations between VA and vision-related QoL. P = 0.05 was considered statistically significant for all analyses. Results: Thirty-four EVD survivors underwent cataract surgery in the EVICT study. Before MSICS, the mean logMAR VA was 2.24 (standard deviation [SD]: 0.98), and the mean NEI-VFQ-25 composite score was 54 (SD: 15); however, there was no significant association between the pre-surgery measurements (average difference in VA/10 unit increase in NEI-VFQ-25: -0.04, 95% confidence interval (CI): -0.33-0.26, P = 0.80). There was a significant improvement in logMAR VA after MSICS (mean: 1.6, P < 0.001), but there was no significant change in the NEI-VFQ-25 composite (-0.87, 95% (CI): -10.32-8.59, P = 0.85). None of the subscales showed significant improvements (P > 0.12 for all); however, the magnitude of the mean change for distance activities (6.65), near activities (6.76), general vision (-7.69), social functioning (-9.13) and colour vision (13.33) met the criteria for a clinically meaningful difference (4-6). In the subset with paired measurements (n = 16), there were no significant association changes in logMAR VA and NEI VFQ-25 composite scores (P > 0.12 for all). Conclusion: Following cataract surgery, VA in EVD survivors improved, but these improvements were not reflected in NEI VFQ-25 composite scores or specific subscales; however, the small sample size limits generalizability absent more research. Differences in sociocultural context and activities that affect the QoL in resource-limited areas may contribute to the limitations seen with NEI VFQ-25. In addition, better eye dominance could contribute to any lack of association as NEI VFQ-25 evaluates vision as a whole. Further, assessment of factors contributing to improved QoL may help to define the impact of vision health in varied environments.

Ophthalmic implications of biological threat agents according to the chemical, biological, radiological, nuclear, and explosives framework.

As technology continues to evolve, the possibility for a wide range of dangers to people, organizations, and countries escalate globally. The United States federal government classifies types of threats with the capability of inflicting mass casualties and societal disruption as Chemical, Biological, Radiological, Nuclear, and Energetics/Explosives (CBRNE). Such incidents encompass accidental and intentional events ranging from weapons of mass destruction and bioterrorism to fires or spills involving hazardous or radiologic material. All of these have the capacity to inflict death or severe physical, neurological, and/or sensorial disabilities if injuries are not diagnosed and treated in a timely manner. Ophthalmic injury can provide important insight into understanding and treating patients impacted by CBRNE agents; however, improper ophthalmic management can result in suboptimal patient outcomes. This review specifically addresses the biological agents the Center for Disease Control and Prevention (CDC) deems to have the greatest capacity for bioterrorism. CBRNE biological agents, encompassing pathogens and organic toxins, are further subdivided into categories A, B, and C according to their national security threat level. In our compendium of these biological agents, we address their respective CDC category, systemic and ophthalmic manifestations, route of transmission and personal protective equipment considerations as well as pertinent vaccination and treatment guidelines.

Ophthalmic Features and Implications of Poxviruses: Lessons from Clinical and Basic Research.

Amidst the ongoing monkeypox outbreak, global awareness has been directed towards the prevention of viral transmission and case management, with the World Health Organization declaring the outbreak a public health emergency of international concern. Monkeypox virus is one of several species in the Orthopoxvirus genus, with other species of the genus including the variola, cowpox, mousepox, camelpox, raccoonpox, skunkpox, and volepox viruses. Although the nomenclature of these species is based on the animal host from which they were originally isolated, transmission from animals to humans has been reported with several species. The progression of disease, following an incubation period, typically consists of a prodromal phase with systemic flu-like symptoms. Various organ systems may be affected in addition to the formation of pathognomonic skin lesions. As monkeypox poses a continued public health concern, the ophthalmic sequelae of monkeypox virus, especially those leading to vision loss, warrant consideration as well. This review provides a comprehensive summary of the ophthalmic implications of poxviruses in clinical and laboratory settings reported in the literature, as well as areas of unmet need and future research.

Triamcinolone acetonide injectable suspension for suprachoroidal use in the treatment of macular edema associated with uveitis.

Introduction: Macular edema due to noninfectious uveitis is a sight-threatening complication that is routinely treated with corticosteroids. Triamcinolone acetonide injectable suspension for suprachoroidal use (Xipere™) is an alternative treatment option for patients with non-infectious uveitis associated macular edema. Areas covered: This review describes the recently FDA approved triamcinolone acetonide injectable suspension that can be injected into the suprachoroidal space. This physiological space is between the sclera and choroid. This allows for therapeutic targeting of the retina and choroid. This review highlights published clinical trials for this novel drug preparation. Expert opinion: Suprachoroidal administration of triamcinolone acetonide has shown improvement in vision and inflammation in studies with non-infectious uveitis associated macular edema. This unique delivery method suggests the potential to decrease side effects of anterior segment exposure such as glaucoma and cataract, but head-to-head trials are needed for further study of safety and efficacy. Additionally, there are promising prospective studies underway for utilization of the suprachoroidal space for other diseases including macular degeneration, diabetic macular edema, and ocular tumors.

Optimal Supportive Care With Selinexor Improves Outcomes in Patients With Relapsed/Refractory Multiple Myeloma.

BACKGROUND: Supportive care improves outcomes in many cancers. In the pivotal STORM study selinexor, a first-in-class, oral, selective exportin 1 inhibitor, and low-dose dexamethasone proved to be an effective treatment for patients with triple-class refractory myeloma. We conducted a post-hoc analysis to test the hypothesis that increased utilization of supportive care measures in a sub-cohort of the STORM study prolonged treatment duration with- and improved efficacy of- selinexor. MATERIALS AND METHODS: The STORM protocol included specific recommendations for dose modifications and supportive care to mitigate selinexor most common adverse events (AEs) including nausea, fatigue, and thrombocytopenia. The Tisch Cancer Center at Mount Sinai School of Medicine (MSSM) incorporated additional supportive care strategies within the framework of the STORM protocol. RESULTS: Of 123 patients enrolled in STORM, 28 were enrolled at MSSM. The overall response rate was 26.2% in the overall STORM population and 53.6% in the MSSM cohort. Moreover, duration of response, progression free survival, and overall survival were longer in the MSSM cohort. AEs and dose modification events were similar in the 2 groups. The MSSM cohort had more dose reductions (67.9% vs. 50.5%), and higher use of multiple antiemetic agents (71.4% vs. 50.1%) and romiplostim (32.1% vs. 6.3%), but less discontinuations due to treatment-related AEs (3.6% vs. 25.3%). CONCLUSION: These results suggests that in addition to more frequent dose reductions, prompter and more aggressive supportive care may have contributed to the low discontinuation rate, longer duration therapy, and greater efficacy rates observed in the MSSM cohort. (ClinicalTrials.gov NCT02336815).

Update on biologic therapies for juvenile idiopathic arthritis-associated uveitis.

Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease of childhood, and juvenile idiopathic associated uveitis (JIA-U) is the most frequently noted extra-articular manifestation. JIA-U can present asymptomatically and lead to ocular complications, so regular screening and monitoring are needed to prevent potentially sight-threatening sequelae. Topical glucocorticoids such as prednisolone acetate are usually the first line of treatment for anterior uveitis associated with JIA-U, but long-term use may be associated with cataract, ocular hypertension and glaucoma. Disease modifying anti-rheumatic drugs (DMARDs) such as methotrexate allow tapering of the corticosteroids to prevent long-term complications. Biologic therapies have been increasingly used as targeted therapies for JIA-U, particularly monoclonal antibodies targeting the proinflammatory cytokine TNF-α such as adalimumab and infliximab. One recent, multicenter, prospective, randomized clinical trial provided evidence of the efficacy of adalimumab with methotrexate for JIA-U compared to methotrexate alone. Another clinical trial studying the interleukin-6 inhibitor tocilizumab for JIA-U showed promise in tapering topical corticosteroids. Additionally, JAK inhibitors are emerging biologic therapies for JIA-U in patients refractory to TNF-α inhibitors, with a clinical trial assessing the efficacy of baricitinib for JIA-U underway. While clinical trials on these novel biologics are limited, further investigation of these agents may provide additional therapeutic options for JIA-U.

A phase II study of pomalidomide, daily oral cyclophosphamide, and dexamethasone in relapsed/refractory multiple myeloma.

Relapsed/refractory multiple myeloma patients treated with pomalidomide and dexamethasone have an overall response rate (ORR) of ∼30% and median progression-free survival (PFS) of 4-5 months. Previous studies explored addition of weekly cyclophosphamide, but we hypothesized that daily dosing allows for better synergy. We report the open-label, single-center phase II study of pomalidomide, daily cyclophosphamide and weekly dexamethasone (PCD). Thirty-three patients were evaluable for efficacy and underwent 28-day cycles of pomalidomide (4 mg/day, D1-21), cyclophosphamide (50 mg b.i.d., D1-21) and weekly dexamethasone. All were lenalidomide-refractory and 55% were refractory to lenalidomide and proteasome inhibitor. ORR was 73%; median PFS and overall survival were 13.3 months and 57.2 months respectively. Grade 3/4 toxicities were primarily hematologic but manageable with dose reductions. Early disease progression correlated with MYC expression and flow cytometry demonstrates an activated microenvironment post-PCD. Addition of metronomic cyclophosphamide to pomalidomide and dexamethasone is a cost-effective, oral regimen with encouraging PFS.

B!RTH: a mixed-methods survey of audience members' reflections of a global women's health arts and science programme in England, Ireland, Scotland and Switzerland.

OBJECTIVE: Public engagement and science communication are growing as an important forum in the design and dissemination of research. The B!RTH programme is a partnership that uses theatre in combination with scientific expert panel discussions to raise awareness about the global inequality in women's health and access to healthcare. As part of this project, we assessed the views and experiences of audiences participating in B!RTH events. DESIGN: We conducted a multi-site mixed-methods survey using paper-based questionnaires. SETTINGS: Data were collected at four B!RTH theatre and science events: Dublin (Ireland), Edinburgh (Scotland), Geneva (Switzerland) and Liverpool (England) after the performance of four plays and three expert panel discussions. PARTICIPANTS: All audience members. METHODS: Descriptive analysis was conducted for the responses to the closed-ended survey questions, and thematic analysis was used for written free text provided. RESULTS: The estimated response rate was 42%; 363 members of the audiences responded. Most respondents had been emotionally moved by the performances (92.8%) and felt challenged and provoked (80.7%). Many respondents (73.6%) agreed that their eyes had been opened by new ideas. Five themes emerged from the free-text analysis: (1) an expression of thanks and positive feedback on the content and performance of the plays, (2) the benefit of and innovative use of art and science, (3) personal feelings in response to the plays and panel discussions, (4) the need for action and (5) suggestions for use of the plays and panel discussions in schools and universities to 'bring to life the human story behind the statistics'. CONCLUSIONS: The B!RTH programme highlights how art and science can be used in partnership and is an effective tool to engage the public, to deliver key messages and to raise awareness about inequalities in global maternal and reproductive healthcare issues.

Guidance was developed on how to write a plain language summary for diagnostic test accuracy reviews.

OBJECTIVE: To develop guidance for authors of diagnostic test accuracy (DTA) reviews to help them write a plain language summary of the results of their review. STUDY DESIGN AND SETTING: We used a combination of focus groups, user testing, and a web-based survey. Participants included patient representatives, media representatives, and health professionals. RESULTS: We present step-by-step guidance for authors of DTA reviews for writing a plain language summary. This guidance is illustrated with examples of reader-tested sentences, explanations, and a figure. CONCLUSION: We hope this guidance will allow reviewers to present the findings of DTA reviews so that it is easier for readers to understand the results and conclusions. This will increase the accessibility of these reviews for various audiences.

Managing antibiotics wisely: a quality improvement programme in a tertiary neonatal unit in the UK.

Microbial resistance to antibiotics is a serious global health problem compounded by antibiotic overuse and limited investment in new antibiotic research. Inappropriate perinatal antibiotic exposure is increasingly linked to lifelong adverse outcomes through its impact on the developing microbiome. Antibiotic stewardship may be the only effective preventative strategy currently available. As the first tertiary neonatal unit in the UK to collaborate in an international quality improvement programme (QIP) with Vermont Oxford Network (VON), we present the results of our antibiotic stewardship initiative. The QIP was officially launched in January 2016 and aimed to reduce antibiotic usage rate (AUR) by 20% of baseline by 31st December 2016 without compromising patient safety. A multidisciplinary team of professionals and parent representatives shared good practices and improvement strategies through international webinars and local meetings, devised uniform data collection methodology and implemented a number of carefully selected 'Plan-Do-Study-Act' cycles. Run charts were used to present data and, where appropriate, statistical analysis undertaken to compare outcomes. The QIP resulted in a sustained reduction in AUR from a baseline median of 347 to 198 per 1000 patient-days (a reduction of 43%). The proportion of culture-negative sepsis screens where antibiotics were stopped within 36-48 hours increased consistently from a baseline of 32.5% to 91%. The antibiotic days per patient at discharge reduced from a median of 3 to 2 days, and there was a reduction in practice variation. Our annual mortality and necrotising enterocolitis rates for the VON cohort (<30 weeks or <1500 g) were the best ever recorded, 5.5% and 1.4%, respectively. Audits confirmed a high level of staff and family awareness of the QIP. The QIP achieved a sustained reduction in antibiotic use without compromising patient safety. Our challenge is to sustain this improvement safely.

Clinical laboratory and imaging evidence for effectiveness of agarose-agarose macrobeads containing stem-like cells derived from a mouse renal adenocarcinoma cell population (RMBs) in treatment-resistant, advanced metastatic colorectal cancer: Evaluation of a biological-systems approach to cancer therapy (U.S. FDA IND-BB 10091; NCT 02046174, NCT 01053013).

OBJECTIVE: The complexity, heterogeneity and capacity of malignant neoplastic cells and tumors for rapid change and evolution suggest that living-cell-based biological-systems approaches to cancer treatment are merited. Testing this hypothesis, the tumor marker, metabolic activity, and overall survival (OS) responses, to the use of one such system, implantable macrobeads [RENCA macrobeads (RMBs)], in phase I and IIa clinical trials in advanced, treatment-resistant metastatic colorectal cancer (mCRC) are described here. METHODS: Forty-eight mCRC patients (30 females; 18 males), who had failed all available, approved treatments, underwent RMB implantation (8 RMB/kg body weight) up to 4 times in phase I and phase IIa open-label trials. Physicals, labs [tumor and inflammation markers, lactate dehydrogenase (LDH)] and positron emission tomography-computed tomography (PET-CT) imaging to measure number/volume and metabolic activity of the tumors were performed pre- and 3-month-post-implantation to evaluate safety and initial efficacy (as defined by biological responses). PET-CT maximum standard uptake value (SUVmax) (baseline and d 90; SUVmax ≥2.5), LDH, and carcinoembryonic antigen (CEA) and/or cancer antigen 19-9 (CA 19-9) response (baseline, d 30 and/or d 60) were assessed and compared to OS. RESULTS: Responses after implantation were characterized by an at least 20% decrease in CEA and/or CA 19-9 in 75% of patients. Fluorodeoxyglucose (FDG)-positive lesions (phase I, 39; 2a, 82) were detected in 37/48 evaluable patients, with 35% stable volume and stable or decreased SUV (10) plus four with necrosis; 10, increased tumor volume, SUV. LDH levels remained stable and low in Responders (R) (d 0-60, 290.4-333.9), but increased steadily in Non-responders (NR) (d 0-60, 382.8-1,278.5) (d 60, P=0.050). Responders to RMBs, indicated by the changes in the above markers, correlated with OS (R mean OS=10.76 months; NR mean OS=4.9 months; P=0.0006). CONCLUSIONS: The correlations of the tumor marker, tumor volume and SUV changes on PET-CT, and LDH levels themselves, and with OS, support the concept of a biological response to RMB implantation and the validity of the biological-systems approach to mCRC. A phase III clinical trial is planned.

Investigating baseline red meat slaughter operator capacity and directions for development in Lao PDR.

A study of operator knowledge, attitudes and practices (KAP) in red meat slaughter premise operations in northern Laos was conducted and compared with international best practice, to inform future industry development. The survey interviewed 68 (of 94 possible participants) employees from all ten commercial slaughter premises in six districts in three northern Laos provinces. This was supported by observations of slaughter premises, processes and the conduct of personnel. Descriptive analysis and linear regression modelling identified significant KAP predictor factors, and a gap analysis supported or rejected inferences from the generally low KAP scores for human and animal health, animal welfare, good manufacturing practices (GMP), work conditions and economics. The median proportion of correctly/desirably answered knowledge-related questions was 35.2% (interquartile range [IQR] = 22.2-51.9%) with 27.3% (IQR = 15.9-31.8%) for the attitude-related questions and 21.4% (IQR = 14.3-35.7%) for the practice-related questions. Two districts had significantly lower KAP scores than other districts, and staff had the lowest and meat inspectors had the highest scores. This study indicates that the current KAP for red meat processing falls short of international standards and that training programmes on disease risks and prevention are important in facilitating red meat industry development.

Understanding Children's Heart Surgery Data: A Cross-Disciplinary Approach to Codevelop a Website.

Risk-adjusted survival statistics after children's heart surgery are published annually in the United Kingdom. Interpreting these statistics is difficult, and better resources about how to interpret survival data are needed. Here we describe how a multidisciplinary team of mathematicians, psychologists, and a charity worked with parents of heart surgery children and other users to codevelop online resources to present survival outcomes. Early and ongoing involvement of users was crucial and considerably changed the content, scope, and look of the website, and the formal psychology experiments provided deeper insight. The website http://childrensheartsurgery.info/ was launched in June 2016 to very positive reviews.

Recognition of and care-seeking for maternal and newborn complications in Jayawijaya district, Papua province, Indonesia: a qualitative study.

BACKGROUND: Indonesia's progress on reducing maternal and newborn mortality rates has slowed in recent years, predominantly in rural areas. To reduce maternal and newborn mortality, access to quality and skilled care, particularly at the facility level, is crucial. Yet, accessing such care is often delayed when maternal and newborn complications arise. Using the "Three Delays" model originated by Thaddeus and Maine (1994), investigation into reasons for delaying the decision to seek care, delaying arrival at a health facility, and delaying the receiving of adequate care, may help in establishing more focused interventions to improve maternal and newborn health in this region. METHODS: This qualitative study focused on identifying, analyzing, and describing illness recognition and care-seeking patterns related to maternal and newborn complications in the Jayawijaya district of Papua province, Indonesia. Group interviews were conducted with families and other caregivers from within 15 villages of Jayawijaya who had either experienced a maternal or newborn illness or maternal or newborn death. RESULTS: For maternal cases, excessive bleeding after delivery was recognized as a danger sign, and the process to decide to seek care was relatively quick. The decision-making process was mostly dominated by the husband. Most care was started at home by birth attendants, but the majority sought care outside of the home within the public health system. For newborn cases, most of the caregivers could not easily recognize newborn danger signs. Parents acted as the main decision-makers for seeking care. Decisions to seek care from a facility, such as the clinic or hospital, were only made when healthcare workers could not handle the case within the home. All newborn deaths were associated with delays in seeking care due to caretaker limitations in danger sign identification, whereas all maternal deaths were associated with delays in receiving appropriate care at facility level. CONCLUSIONS: For maternal health, emphasis needs to be placed on supply side solutions, and for newborn health, emphasis needs to be placed on demand and supply side solutions, probably including community-based interventions. Contextualized information for the design of programs aimed to affect maternal and newborn health is a prerequisite.