Helping parents know when to seek help for an acutely ill child: Evidence based co-development of a mobile phone app using complex intervention methodology.

BACKGROUND: Acute illness accounts for the majority of episodes of illness in children under five years of age and is the age group with the highest consultation rate in general practice in the UK. The number of children presenting to emergency care is also steadily increasing, having risen beyond pre-pandemic numbers. Such high, and increasing, rates of consultation have prompted concerns about parents' level of knowledge and confidence in caring for their children when they are ill, and particularly when and how to seek help appropriately. AIM: The ASK SNIFF collaboration research programme identified parents' need for accurate and accessible information to help them know when to seek help for a sick child in 2010. This paper presents the resulting programme of research which aimed to co-develop an evidence-based safety netting intervention (mobile app) to help parents know when to seek help for an acutely ill child under the age of five years in the UK. METHODS: Our programme used a collaborative six step process with 147 parent and 324 health professional participants over a period of six years including: scoping existing interventions, systematic review, qualitative research, video capture, content identification and development, consensus methodology, parent and expert clinical review. RESULTS: Our programme has produced evidence-based content for an app supported by video clips. Our collaborative approach has supported every stage of our work, ensuring that the end result reflects the experiences, perspectives and expressed needs of parents and the clinicians they consult. CONCLUSION: We have not found any other resource which has used this type of approach, which may explain why there is no published evaluation data demonstrating the impact of existing UK resources. Future mobile apps should be designed and developed with the service users for whom they are intended.

Accelerometer and Survey Assessed Physical Activity in Children With Epilepsy: A Case-Controlled Study.

PURPOSE: Anecdotal evidence suggests that children with epilepsy (CWE) are limited in the frequency of their daily physical activity (PA). However, there is limited research utilizing device-based measures of PA. We compared levels of PA and sedentary behavior in CWE (11-15 y) and age- and gender-matched healthy controls. METHOD: Participants (n = 60 CWE [25 males, 35 females] and n = 49 controls [25 males, 24 females]) wore a Actigraph accelerometer (GT3X or GT3X+) for 7 consecutive days during waking hours and self-reported their PA and sedentary behaviors. CWE were compared with control children on time spent in different intensities of PA and on self-reported PA and sedentary behavior. Factors associated with PA were analyzed using linear regression. RESULTS: CWE spent less time in accelerometer assessed light (189.15 vs 215.01 min/d, P < .05) and vigorous PA (35.14 vs 44.28 min/d, P < .05) on weekdays compared with controls. There were no significant differences between CWE and control participants in accelerometer assessed time spent sedentary or time spent in PA on weekends. Among CWE, older children engaged in more reported sedentary behavior and younger children spent more time in most domains of PA (P < .05). Furthermore, CWE reported less PA than controls (P = .006). Sixteen percent of controls met World Health Organization PA guidelines compared with 10% of CWE. There was a positive relationship between accelerometer assessed PA and quality of life for CWE. CONCLUSION: CWE spent less time in light and moderate to vigorous PA on weekdays. Further research is needed to understand reasons for these differences.

Interventions to promote the health and well-being of children under 5s experiencing homelessness in high-income countries: a scoping review.

OBJECTIVES: Homelessness among families with children under 5 residing in temporary accommodation is a growing global concern, especially in high-income countries (HICs). Despite significant impacts on health and development, these 'invisible' children often fall through the gaps in policy and services. The study's primary objective is to map the content and delivery methods of culturally sensitive interventions for children under 5 experiencing homelessness in HICs. DESIGN: A scoping review guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews checklist. DATA SOURCES: Databases include PubMed, Medline, SCOPUS, The Cochrane Library and Google Scholar were searched up to 24 March 2022. ELIGIBILITY CRITERIA: This scoping review includes studies that describe, measure or evaluate intervention strategies aimed at improving child health programmes, specifically those yielding positive outcomes in key areas like feeding, nutrition, care practices and parenting. DATA EXTRACTION AND SYNTHESIS: Articles were selected and evaluated by two independent reviewers, with a dispute resolution system involving a third reviewer for contested selections. The methodological quality of the studies was assessed using various tools including the Risk of Bias (RoB) tool, Cochrane RoB V.2.0, the Risk of Bias Assessment Tool for Non-randomized Studies (RoBANS) and the Grading of Recommendations Assessment, Development, and Evaluation (GRADE), each selected according to the type of article. RESULTS: The database search yielded 951 results. After deduplication, abstract screening and full review, 13 articles met the inclusion criteria. Two predominant categories of intervention delivery methods were identified in this research: group-based interventions (educational sessions) and individual-based interventions (home visits). CONCLUSION: This review highlights effective interventions for promoting the health and well-being of children under 5 experiencing homelessness, including educational sessions and home visits. Research has supported the importance of home visiting to be instrumental in breaking down language, cultural and health literacy barriers.

Nurture Early for Optimal Nutrition (NEON) participatory learning and action women's groups to improve infant feeding and practices in South Asian infants: pilot randomised trial study protocol.

INTRODUCTION: Feeding practices developed in early life can impact a child's nutrition, growth, dental health, cognitive development and lifetime risk of chronic diseases. Substantial evidence suggests ethnic health inequalities, and non-recommended complementary infant feeding practices among UK's South Asian (SA) population. Nurture Early for Optimal Nutrition aims to use women's group participatory learning and action (PLA) cycles to optimise infant feeding, care and dental hygiene practices in SA infants <2 years in East London. METHODS AND ANALYSIS: A three-arm pilot feasibility cluster randomised controlled trial will assess feasibility, acceptability, costs and explore preliminary effectiveness for proposed primary outcome (ie, reporting on body mass index (BMI) z-score). Multilingual SA community facilitators will deliver the intervention, group PLA Cycle, to mothers/carers in respective ethnic/language groups. 12 wards are randomised to face-to-face PLA, online PLA and usual care arms in 1:1:1 ratio. Primary outcomes are feasibility and process measures (ie, BMI z-score, study records, feedback questionnaires, direct observation of intervention and sustainability) for assessment against Go/Stop criteria. Secondary outcomes are cluster-level and economic outcomes (ie, eating behaviour, parental feeding practices, network diffusion, children development performance, level of dental caries, general practitioner utilisation, costs, staff time). Outcomes are measured at baseline, every 2 weeks during intervention, 14 weeks and at 6 months by blinded outcome assessors where possible. This study will use concurrent mixed-methods evaluation. Quantitative analyses include descriptive summary with 95% CI and sample size calculation for the definitive trial. The intervention effect with CI will be estimated for child BMI z-score. Implementation will be evaluated qualitatively using thematic framework analysis. ETHICS AND DISSEMINATION: Ethics approval was obtained from University College London (UCL), National Health Service (Health Research Authority (HRA) and Health and Care Research Wales (HRCW)). Results will be published in peer-reviewed journals, presented at scientific conferences/workshops with commissioners, partners and participating communities. Plain language summaries will be disseminated through community groups, websites and social media. TRIAL REGISTRATION NUMBER: IRAS-ID-296259 (ISRCTN10234623).

Mapping Two Decades of Paediatric Down Syndrome Research Literature.

Background: While research has led to significant advancements in the health and life expectancy of children with Down Syndrome (DS), there remains a significant burden of disease and health inequity. Further research, focused on areas of greatest need, is imperative to address this. An understanding of what research has been undertaken, and any existing gaps, helps to guide future academic efforts. Methods: We utilised an epistemological approach to summarise two decades of paediatric DS literature. Publications were categorised according to the country of origin, methodology, primary health themes and subcategory research themes. Results: Across 5,800 paediatric DS publications we demonstrate a general increase in the number of publications in this field between 2000 and 2014, with a trending decline thereafter. The majority of publications were affiliated with Institutions based in Western countries. The majority of studies utilised a cross-sectional methodology (33.3%), while relatively few were interventional (5.6%), qualitative (2.7%) or mixed-method studies (1.6%). Most publications focused on development & cognition (13.1%), neurology (9.9%) and oncology (9.8%), with fewer focusing on genitourinary health (0.9%), growth (0.9%), mortality (0.9%) and child protection (0.2%). Conclusion: These findings highlight areas of relative paucity within the paediatric DS literature which may warrant increased academic attention.

A rapid systematic scoping review of research on the impacts of water contaminated by chemicals on very young children.

Low-income countries are struggling with the health impacts of both surface and groundwater chemical contamination. Although the impact of biological contaminants on children's health is acknowledged, the long-term effects of these and emerging contaminants on young children may be underestimated. To map the existing evidence on health impacts of water contaminated with chemicals on young children (<5 years), we conducted a scoping review to select and organize relevant literature. Of the 98 studies in the review, 24 revealed that the hazard ratio of arsenic, nitrates, cadmium, and fluoride (all of which are on the World Health Organisation's list of 10 chemicals of public health concern) was higher in very young children than in older age groups. Anthropogenic activities (textile manufacturing, waste disposal, and intensified agriculture) are leading contributors to the release of chemicals to groundwater used for drinking. Three major pathways for chemical contamination exposure in young children were confirmed: maternal transmission during pregnancy and breastfeeding, and early school years. Children exhibited acute and chronic disruptions to their neurological, skeletal, reproductive, and endocrine systems, as well as cumulative carcinogenic risks, amongst other life-altering consequences. The lack of research on emerging contaminants' effects on young children in low-income countries is worrisome, as their increased use may compound the issues caused by the existing problem of "legacy chemicals." Precautionary principle should regulate the operation of industries producing these chemicals in a robust manner. Evidence from major producers and exporters in high-income countries is sufficient to warrant action, even without waiting for direct harm to be observed in low-income countries. Literature recommends prioritising prevention of contamination over demand side treatment or finding alternative water sources, especially in water-scarce areas affected by climate change. Local and transnational efforts are required to enforce safer industry practices and prevent further water quality deterioration in low-income countries.

Facility-based stillbirth review processes used in different countries across the world: a systematic review.

Background: Facility-based stillbirth review provides opportunities to estimate incidence, evaluate causes and risk factors for stillbirths, and identify any issues related to the quality of pregnancy and childbirth care which require improvement. Our aim was to systematically review all types and methods of facility-based stillbirth review processes used in different countries across the world, to examine how stillbirth reviews in facility settings are being conducted worldwide and to identify the outcomes of implementing the reviews. Moreover, to identify facilitators and barriers influencing the implementation of the identified facility-based stillbirth reviews processes by conducting subgroup analyses. Methods: A systematic review of published literature was conducted by searching MEDLINE (OvidSP) [1946-present], EMBASE (OvidSP) [1974-present], WHO Global Index Medicus (globalindexmedicus.net), Global Health (OvidSP) [1973-2022 Week 8] and CINAHL (EBSCOHost) [1982-present] from their inception until 11 January, 2023. For unpublished or grey literature, the WHO databases, Google Scholar and ProQuest Dissertations & Theses Global were searched, as well as hand searching the reference lists of included studies. MESH terms encompassing "∗Clinical Audit", "∗Perinatal Mortality", "Pregnancy Complications", and "Stillbirth" were used with Boolean operators. Studies that used a facility-based review process or any approach to evaluate care prior to stillbirth, and explained the methods used were included. Reviews and editorials were excluded. Three authors (YYB, UGA, and DBT) independently screened and extracted data, and assessed the risk of bias using an adapted JBI's Checklist for Case Series. A logic model was used to inform the narrative synthesis. The review protocol was registered with PROSPERO, CRD42022304239. Findings: A total of 68 studies from 17 high-income (HICs) and 22 low-and-middle-income countries (LMICs) met the inclusion criteria from a total of 7258 identified records. These were stillbirth reviews conducted at different levels: district, state, national, and international. Three types were identified: audit, review, and confidential enquiry, but not all desired components were included in most processes, which led to a mismatch between the description of the type and the actual method used. Routine data from hospital records was the most common data source for identifying stillbirths, and case assessment was based on stillbirth definition in 48 out of 68 studies. Hospital notes were the most common source of information about care received and causes/risk factors for stillbirth. Short-term and medium-term outcomes were reported in 14 studies, but impact of the review process on reducing stillbirth, which is more difficult to establish, was not reported in any study. Facilitators and barriers in implementing a successful stillbirth review process identified from 14 studies focused on three main themes: resources, expertise, and commitment. Interpretation: This systematic review's findings identified that there is a need for clear guidelines on how to measure the impact of implementation of changes based on outputs of stillbirth reviews and methods to enable effective dissemination of learning points in the future and promoting them through training platforms. In addition, there is a need to develop and adopt a universal definition of stillbirth to facilitate meaningful comparison of stillbirth rates between regions. The key limitation of this review is that while using a logic model for narrative synthesis was deemed most appropriate for this study, sequence of implementing a stillbirth review in the real world is not linear, and assumptions are often not met. Therefore, the logic model proposed in this study should be interpreted with flexibility when designing a stillbirth review process. The generated learnings from the stillbirth review processes inform the action plans and allow facilities to consider where the changes should happen to improve the quality of care in the facilities, enabling positive short-term and medium-term outcomes. Funding: Kellogg College, University of Oxford, Clarendon Fund, University of Oxford, Nuffield Department of Population Health, University of Oxford and Medical Research Council (MRC).

Building referral mechanisms for neonatal care in humanitarian emergency settings: A systematic review.

AIM: During humanitarian emergencies, women and children are particularly vulnerable to health complications and neonatal mortality rates have been shown to rise. Additionally, health cluster partners face challenges in coordinating referrals, both between communities and camps to health facilities and across different levels of health facilities. The purpose of this review was to identify the primary referral needs of neonates during humanitarian emergencies, current gaps and barriers, and effective mechanisms for overcoming these barriers. METHODS: A systematic review was performed using four electronic databases (CINAHL, EMBASE, Medline, and Scopus) between June and August 2019 (PROSPERO registration number CRD42019127705). Title, abstract, and full text screening were conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The target population was neonates born during humanitarian emergencies. Studies from high-income countries and prior to 1991 were excluded. The STROBE checklist was used to assess for risk of bias. RESULTS: A total of 11 articles were included in the analysis; these were mainly cross-sectional, field-based studies. The primary needs identified were referrals from homes to health facilities before and during labour, and inter-facility referrals after labour to more specialised services. Some of the main barriers included a lack of roads and infrastructure for transport, staff shortages-especially among more specialised services, and a lack of knowledge among patients for self-referral. Mechanisms for addressing these needs and gaps included providing training for community healthcare workers (CHWs) or traditional birth attendants to identify and address antenatal and post-natal complications; education programmes for pregnant women during the antenatal period; and establishing ambulance services in partnership with local Non-Governmental Organizations. CONCLUSION: This review benefited from a strong consensus among selected studies but was limited in the quality of data and types of data that were reported. Based on the above findings, the following recommendations were compiled: Focus on local capacity-building programmes to address programmes acutely. Recruit CHWs to raise awareness of neonatal complications among pregnant women. Upskill CHWs to provide timely, appropriate and quality care during humanitarian emergencies.

Parental help-seeking behaviour for, and care of, a sick or injured child during the COVID-19 pandemic: a European online survey.

BACKGROUND: Globally, the COVID-19 pandemic had a huge impact on patients and healthcare systems. A decline in paediatric visits to healthcare settings was observed, which might have been due to lower incidence of injury and infectious illness, changes in healthcare services and parental concern. The aim of our study was to examine parental experiences of help-seeking for, and care of, a sick or injured child during COVID-19 lockdown periods in five European countries with different healthcare systems in place. METHODS: An online survey for parents with a child with any kind or illness of injury during COVID-19 lockdowns was circulated through social media in five European countries: Italy, Spain, Sweden, the Netherlands, and the United Kingdom. Parents living in one of these countries with self-identification of a sick or injured child during COVID-19 lockdown periods were eligible to fill in the survey. Descriptive statistics were used for the level of restrictions per country, children's characteristics, family characteristics and reported help-seeking behaviour of parents prior to the lockdown and their real experience during the lockdown. The free text data was subjected to thematic analysis. RESULTS: The survey was fully completed by 598 parents, ranging from 50 to 198 parents per country, during varying lockdown periods from March 2020 until May 2022. Parents who completed the survey were not deterred from seeking medical help for their sick or injured child during the COVID-19 pandemic. This finding was comparable in five European countries with different healthcare systems in place. Thematic analysis identified three main areas: parental experiences of access to healthcare, changes in parents' help-seeking behaviours for a sick or injured child during lockdowns, and the impact of caring for a sick or injured child during the lockdowns. Parents reported limited access to non-urgent care services and were anxious about either their child or themselves catching COVID-19. CONCLUSION: This insight into parental perspectives of help-seeking behaviour and care for a sick or injured child during COVID-19 lockdowns could inform future strategies to improve access to healthcare, and to provide parents with adequate information concerning when and where to seek help and support during pandemics.

How Does Living in Temporary Accommodation and the COVID-19 Pandemic Impact under 5s' Healthcare Access and Health Outcomes? A Qualitative Study of Key Professionals in a Socially and Ethnically Diverse and Deprived Area of London.

Background: Children < 5 years living in temporary accommodation (U5TA) are vulnerable to poor health outcomes. Few qualitative studies have examined service provider perspectives in family homelessness; none have focused on U5TA with a cross-sector approach. This study explored professionals' perspectives of the barriers and facilitators, including pandemic-related challenges, experienced by U5TA in accessing healthcare and optimising health outcomes, and their experiences in delivering services. Methods: Sixteen semi-structured online interviews were conducted. Professionals working in Newham (London) with U5TA families were recruited from non-profit organisations, the health sector, and Local Authority. A thematic analysis was conducted. Findings: Professionals described barriers including poor parental mental health; unsuitable housing; no social support; mistrust of services; immigration administration; and financial insecurity. Digital poverty, language discordance, and the inability to register and track U5TA made them even less visible to services. Professionals tried to mitigate barriers with improved communication, and through community facilitators. Adverse pandemic effects on U5TA health included delay and regression in developmental milestones and behaviours. In-person services were reduced, exacerbating pre-existing barriers. Interpretation: COVID-19 further reduced the ability of professionals to deliver care to U5TA and significantly impacted the lives of U5TA with potential life-long risks. Innovative and tailored cross-sector strategies are needed, including co-production of public health services and policies focusing on early development, mental health support, employment training, and opportunities for parents/carers.

Multiple Mental Health Literacies in a Traditional Temple Site in Kerala: The Intersection Between Beliefs, Spiritual and Healing Regimes.

The notion of 'mental health literacy' has been proposed as a way of improving mental health problem recognition, service utilisation and reducing stigma. Yet, the idea embodies a number of medical-model assumptions which are often at odds with diverse communities' spiritual traditions and local belief systems. Twenty participants were recruited to this study consisting of mental health service users (N = 7), family carers (N = 8) and community members (N = 5) in a temple town in Kerala, South India participated in semi-structured interviews exploring the variety of beliefs and practices relating to mental health. Our findings indicate that the issue may be better understood in terms of multiple mental health literacies which people deploy in different circumstances. Even those sceptical of traditional and spiritual approaches are knowledgeable about them, and the traditional practices themselves often involve detailed regimes of activities aimed at effecting an improvement in the person's mood or condition. Therefore, we argue it is appropriate to consider mental health literacy not as a unitary universal phenomenon but instead as a mosaic of different literacies which may be deployed in different settings and in line with different experiences and which may operate in synergy with each other to enable treatment but also facilitate a sense of meaning and purpose in life.

"A very big challenge": a qualitative study to explore the early barriers and enablers to implementing a national genomic medicine service in England.

Background: The Genomic Medicine Service (GMS) was launched in 2018 in England to create a step-change in the use of genomics in the NHS, including offering whole genome sequencing (WGS) as part of routine care. In this qualitative study on pediatric rare disease diagnosis, we used an implementation science framework to identify enablers and barriers which have influenced rollout. Methods: Semi-structured interviews were conducted with seven participants tasked with designing the GMS and 14 tasked with leading the implementation across the seven Genomic Medicine Service Alliances (GMSAs) and/or Genomic Laboratory Hubs (GLHs) between October 2021 and February 2022. Results: Overall, those involved in delivering the service strongly support its aims and ambitions. Challenges include: 1) concerns around the lack of trained and available workforce (clinicians and scientists) to seek consent from patients, interpret findings and communicate results; 2) the lack of a digital, coordinated infrastructure in place to support and standardize delivery with knock-on effects including onerous administrative aspects required to consent patients and order WGS tests; 3) that the "mainstreaming agenda", whilst considered important, encountered reluctance to become engaged from those who did not see it as a priority or viewed it as being politically rather than clinically driven; 4) the timelines and targets set for the GMS were perceived by some as too ambitious. Interviewees discussed local adaptations and strategies employed to address the various challenges they had encountered, including 1) capacity-building, 2) employing genomic associates and other support staff to support the consent and test ordering process, 3) having "genomic champions" embedded in mainstream services to impart knowledge and best practice, 4) enhancing collaboration between genetic and mainstream specialties, 5) building evaluation into the service and 6) co-creating services with patients and the public. Conclusion: Our findings highlight the challenges of implementing system-wide change within a complex healthcare system. Local as well as national solutions can undoubtedly address many of these barriers over time.

Differences in clinical presentation, severity, and treatment of COVID-19 among individuals with Down syndrome from India and high-income countries: Data from the Trisomy 21 Research Society survey.

Background: People with Down syndrome (DS) are one of the highest risk groups for mortality associated with COVID-19, but outcomes may differ across countries due to different co-morbidity profiles, exposures, and societal practices, which could have implications for disease management. This study is designed to identify differences in clinical presentation, severity, and treatment of COVID-19 between India and several high-income countries (HICs). Methods: We used data from an international survey to examine the differences in disease manifestation and management for COVID-19 patients with DS from India vs HIC. De-identified survey data collected from April 2020 to August 2021 were analysed. Results: COVID-19 patients with DS from India were on average nine years younger than those from HICs. Comorbidities associated with a higher risk for severe COVID-19 were more frequent among the patients from India than from HICs. Hospitalizations were more frequent among patients from India as were COVID-19-related medical complications. Treatment strategies differed between India and HICs, with more frequent use of antibiotics in India. The average severity score of 3.31 was recorded for Indian DS in contrast to 2.3 for European and 2.04 for US cases. Conclusions: Presentation and outcomes of COVID-19 among individuals with DS were more severe for patients from India than for those from HIC. Global efforts should especially target vaccination campaigns and other risk-reducing interventions for individuals with DS from low-income countries.

Protocol for an intervention development and pilot implementation evaluation study of an e-health solution to improve newborn care quality and survival in two low-resource settings, Malawi and Zimbabwe: Neotree.

INTRODUCTION: Every year 2.4 million deaths occur worldwide in babies younger than 28 days. Approximately 70% of these deaths occur in low-resource settings because of failure to implement evidence-based interventions. Digital health technologies may offer an implementation solution. Since 2014, we have worked in Bangladesh, Malawi, Zimbabwe and the UK to develop and pilot Neotree: an android app with accompanying data visualisation, linkage and export. Its low-cost hardware and state-of-the-art software are used to improve bedside postnatal care and to provide insights into population health trends, to impact wider policy and practice. METHODS AND ANALYSIS: This is a mixed methods (1) intervention codevelopment and optimisation and (2) pilot implementation evaluation (including economic evaluation) study. Neotree will be implemented in two hospitals in Zimbabwe, and one in Malawi. Over the 2-year study period clinical and demographic newborn data will be collected via Neotree, in addition to behavioural science informed qualitative and quantitative implementation evaluation and measures of cost, newborn care quality and usability. Neotree clinical decision support algorithms will be optimised according to best available evidence and clinical validation studies. ETHICS AND DISSEMINATION: This is a Wellcome Trust funded project (215742_Z_19_Z). Research ethics approvals have been obtained: Malawi College of Medicine Research and Ethics Committee (P.01/20/2909; P.02/19/2613); UCL (17123/001, 6681/001, 5019/004); Medical Research Council Zimbabwe (MRCZ/A/2570), BRTI and JREC institutional review boards (AP155/2020; JREC/327/19), Sally Mugabe Hospital Ethics Committee (071119/64; 250418/48). Results will be disseminated via academic publications and public and policy engagement activities. In this study, the care for an estimated 15 000 babies across three sites will be impacted. TRIAL REGISTRATION NUMBER: NCT0512707; Pre-results.

Why India is struggling to feed their young children? A qualitative analysis for tribal communities.

OBJECTIVE: This interdisciplinary qualitative study aims to explore the health, education, engineering and environment factors impacting on feeding practices in rural India. The ultimate goal of the Participatory Approach for Nutrition in Children: Strengthening Health Education Engineering and Environment Linkages project is to identify challenges and opportunities for improvement to subsequently develop socioculturally appropriate, tailored, innovative interventions for the successful implementation of appropriate infant and young child feeding (IYCF) practices locally. DESIGN: Qualitative research method, involving five phases: (1) identification of local feeding practices; (2) identification of the local needs and opportunities for children aged 6-24 months; and (3-5) analysis of the gathered qualitative data, intervention design, review and distribution. SETTING: Nine villages in two community development blocks, that is, Ghatol and Kushalgarh, located in the Banswara district in Rajasthan, India. PARTICIPANTS: 68 participants completed semistructured interviews or focus group discussions including: mothers, grandmothers, auxiliary nurse midwife, Anganwadi worker, ASHA Sahyogini, school teachers and local elected representative. PHENOMENON OF INTEREST: IYCF practices and the factors associated with it. ANALYSIS: Thematic analysis. RESULTS: Our results could be broadly categorised into two domains: (1) the current practices of IYCF and (2) the key drivers and challenges of IYCF. We explicate the complex phenomena and emergent model focusing on: mother's role and autonomy, knowledge and attitude towards feeding of young children, availability of services and resources that shape these practices set against the context of agriculture and livelihood patterns and its contribution to availability of food as well as on migration cycles thereby affecting the lives of 'left behind', and access to basic health, education and infrastructure services. CONCLUSIONS: This interdisciplinary and participatory study explored determinants impacting feeding practices across political, village and household environments. These results shaped the process for cocreation of our context-specific intervention package.

Developing a community facilitator-led participatory learning and action women's group intervention to improve infant feeding, care and dental hygiene practices in South Asian infants: NEON programme.

INTRODUCTION: The Nurture Early for Optimal Nutrition (NEON) study is a multiphase project that aims to optimize feeding, care and dental hygiene practices in South Asian children <2 years in East London, United Kingdom. The multiphase project uses a participatory learning and action (PLA) approach facilitated by a multilingual community facilitator. In this paper, we elaborate on the process and results of the Intervention Development Phase in the context of the wider NEON programme. METHODS: Qualitative community-based participatory intervention codevelopment and adaptation. SETTING: Community centres in East London and online (Zoom) meetings and workshops. PARTICIPANTS: In total, 32 participants registered to participate in the Intervention Development Phase. Four Intervention Development workshops were held, attended by 25, 17, 20 and 20 participants, respectively. RESULTS: Collaboratively, a culturally sensitive NEON intervention package was developed consisting of (1) PLA group facilitator manual, (2) picture cards detailing recommended and nonrecommended feeding, care and dental hygiene practices with facilitators/barriers to uptake as well as solutions to address these, (3) healthy infant cultural recipes, (4) participatory Community Asset Maps and (5) list of resources and services supporting infant feeding, care and dental hygiene practices. CONCLUSION: The Intervention Development Phase of the NEON programme demonstrates the value of a collaborative approach between researchers, community facilitators and the target population when developing public health interventions. We recommend that interventions to promote infant feeding, care and dental hygiene practices should be codeveloped with communities. Recognizing and taking into account both social and cultural norms may be of particular value for infants from ethnically diverse communities to develop interventions that are both effective in and accepted by these communities. PATIENT AND PUBLIC INVOLVEMENT AND ENGAGEMENT: Considerable efforts were placed on Patient/Participant and Public Involvement and Engagement. Five community facilitators were identified, each of which represented one ethnic/language group: (i) Bangladeshi/Bengali and Sylheti, (ii) Pakistani/Urdu, (iii) Indian/Gujrati, (iv) Indian/Punjabi and (v) Sri Lankan/Tamil. The community facilitators were engaged in every step of the study, from the initial drafting of the protocol and study design to the Intervention Development and refinement of the NEON toolkit, as well as the publication and dissemination of the study findings. More specifically, their role in the Intervention Development Phase of the NEON programme was to: 1. Support the development of the study protocol, information sheets and ethics application. 2. Ensure any documents intended for community members are clear, appropriate and sensitively worded. 3. Develop strategies to troubleshoot any logistical challenges of project delivery, for example, recruitment shortfalls. 4. Contribute to the writing of academic papers, in particular reviewing and revising drafts. 5. Develop plain language summaries and assist in dissemination activities, for example, updates on relevant websites. 6. Contribute to the development of the NEON intervention toolkit and recruitment of the community members. 7. Attend and contribute to Intervention Development workshops, ensuring the participant's voices were the focus of the discussion and workshop outcomes.

Usability-Focused Development and Usage of NeoTree-Beta, an App for Newborn Care in a Low-Resource Neonatal Unit, Malawi.

Background: Neonatal mortality is high in low-resource settings. NeoTree is a digital intervention for neonatal healthcare professionals (HCPs) aiming to achieve data-driven quality improvement and improved neonatal survival in low-resource hospitals. Optimising usability with end-users could help digital health interventions succeed beyond pilot stages in low-resource settings. Usability is the quality of a user's experience when interacting with an intervention, encompassing their effectiveness, efficiency, and overall satisfaction. Objective: To evaluate the usability and usage of NeoTree beta-app and conduct Agile usability-focused intervention development. Method: A real-world pilot of NeoTree beta-app was conducted over 6 months at Kamuzu Central Hospital neonatal unit, Malawi. Prior to deployment, think-aloud interviews were conducted to guide nurses through the app whilst voicing their thoughts aloud (n = 6). System Usability Scale (SUS) scores were collected before the implementation of NeoTree into usual clinical care and 6 months after implementation (n = 8 and 8). During the pilot, real-world user-feedback and user-data were gathered. Feedback notes were subjected to thematic analysis within an Agile "product backlog." For usage, number of users, user-cadre, proportion of admissions/outcomes recorded digitally, and median app-completion times were calculated. Results: Twelve overarching usability themes generated 57 app adjustments, 39 (68%) from think aloud analysis and 18 (32%) from the real-world testing. A total of 21 usability themes/issues with corresponding app features were produced and added to the app. Six themes relating to data collection included exhaustiveness of data schema, prevention of errors, ease of progression, efficiency of data entry using shortcuts, navigation of user interface (UI), and relevancy of content. Six themes relating to the clinical care included cohesion with ward process, embedded education, locally coherent language, adaptability of user-interface to available resources, and printout design to facilitate handover. SUS scores were above average (88.1 and 89.4 at 1 and 6 months, respectively). Ninety-three different HCPs of 5 cadres, recorded 1,323 admissions and 1,197 outcomes over 6 months. NeoTree achieved 100% digital coverage of sick neonates admitted. Median completion times were 16 and 8 min for admissions and outcomes, respectively. Conclusions: This study demonstrates optimisation of a digital health app in a low-resource setting and could inform other similar usability studies apps in similar settings.

Role of schools in community mobilisation to improve IYCF practices in 6-24-month-old tribal children in the Banswara district, India: findings from the qualitative PANChSHEEEL study.

OBJECTIVE: India has been struggling with infant malnutrition for decades. There is a need to identify suitable platforms for community engagement to promote locally feasible, resource efficient Infant and Young Child Feeding (IYCF) interventions. This study aims to explore if and how schools could represent a site for community engagement in rural India, acting as innovation hubs to foster positive change in partnership with the Angawadi centres. DESIGN: Five-phase formative study; A parallel mixed methods approach structured by a socioecological framework was used for data collection at individual, household and community levels. This paper focuses on the qualitative findings. SETTING: This study was undertaken in nine villages within two blocks, 'Ghatol' and 'Kushalgarh', in the Banswara district of Rajasthan, India. PARTICIPANTS: 17 schools were identified. Interviews were conducted with local opinion leaders and representatives in the education sector, including principals, schoolteachers, block and district education officers. Across the nine study villages, information was gathered from 67 mothers, 58 paternal grandmothers using Focus Discussion Groups (FDGs) and 49 key respondents in Key Informant Interviews. RESULTS: Schools were considered an important community resource. Challenges included limited parental participation and student absenteeism; however, several drivers and opportunities were identified, which may render schools a suitable intervention delivery site. Enrolment rates were high, with schools and associated staff encouraging parental involvement and student attendance. Existing initiatives, including the mid-day meal, play opportunities and education on health and hygiene, further highlight the potential reliability of schools as a platform for community mobilisation. CONCLUSIONS: Schools have been shown to be functional platforms frequently visited and trusted by community members. With teachers and children as change agents, schools could represent a suitable setting for community mobilisation in future wider scale intervention studies. Expanding the supportive environment around schools will be essential to reinforce healthy IYCF practices in the long term.

A Citizen Science Approach to Identifying Indoor Environmental Barriers to Optimal Health for under 5s Experiencing Homelessness in Temporary Accommodation.

The first five years of life are critical for optimal growth, health, and cognitive development. Adverse childhood experiences, including experiencing homelessness, can be a risk factor for multiple health issues and developmental challenges. There is a dearth of data collected with and by families with children under age five living in temporary accommodation due to experiencing homelessness (U5TA) describing indoor environmental barriers that prevent U5TA from achieving and maintaining optimal health. The aim of this study was to address this current gap using a citizen science approach. Fifteen participants, who were mothers of U5TA living in a deprived area of London, and the lead researcher collected data in late 2019/early 2020 using: (I) a housing survey conducted via a mobile app; (II) house visits; and (III) collaborative meetings. Data were analyzed using thematic analysis. Key themes included: overcrowding/shared facilities, dampness/mold growth, poor/inadequate kitchen/toilet facilities, infestations/vermin, structural problems/disrepair, unsafe electrics, excessively cold temperatures, and unsafe surfaces that risk causing trips/falls, with all participants experiencing multiple concurrent indoor environmental barriers. The citizen science approach was successfully used to collect meaningful data demonstrating the need for child-centered housing policies meeting the needs of current and future generations of families living in TA.

COVID-19 Vaccination of Individuals with Down Syndrome-Data from the Trisomy 21 Research Society Survey on Safety, Efficacy, and Factors Associated with the Decision to Be Vaccinated.

Individuals with Down syndrome (DS) are among the groups with the highest risk for severe COVID-19. Better understanding of the efficacy and risks of COVID-19 vaccines for individuals with DS may help improve uptake of vaccination. The T21RS COVID-19 Initiative launched an international survey to obtain information on safety and efficacy of COVID-19 vaccines for individuals with DS. De-identified survey data collected between March and December 2021 were analyzed. Of 2172 individuals with DS, 1973 (91%) had received at least one vaccine dose (57% BNT162b2), 107 (5%) were unvaccinated by choice, and 92 (4%) were unvaccinated for other reasons. Most participants had either no side effects (54%) or mild ones such as pain at the injection site (29%), fatigue (12%), and fever (7%). Severe side effects occurred in <0.5% of participants. About 1% of the vaccinated individuals with DS contracted COVID-19 after vaccination, and all recovered. Individuals with DS who were unvaccinated by choice were more likely to be younger, previously recovered from COVID-19, and also unvaccinated against other recommended vaccines. COVID-19 vaccines have been shown to be safe for individuals with DS and effective in terms of resulting in minimal breakthrough infections and milder disease outcomes among fully vaccinated individuals with DS.