A mixed methods study of the management of hearing loss associated with otitis media with effusion in children with Down syndrome

Objectives: To scope current service provision across England for management of otitis media with effusion and hearing loss in children with Down syndrome; to explore professional decision-making about managing otitis media with effusion and hearing loss; and to explore patient and public views on the direction of future research. Design: Mixed methods including a service evaluation of NHS clinical practice through a structured telephone survey; a qualitative study of professional decision-making with in-depth interviews collected and analysed using grounded theory methods; patient/public involvement consultations. Participants: Twenty-one audiology services in England took part in the evaluation; 10 professionals participated in the qualitative study; 21 family members, 10 adults with Down syndrome and representatives from two charities contributed to the consultations. Results: There was variation across services in the frequency of routine hearing surveillance, approaches to managing conductive hearing loss in infancy and provision of hearing aids and grommets. There was variation in how professionals describe their decision-making, reflecting individual treatment preferences, differing approaches to professional remit and institutional factors. The consultations identified that research should focus on improving practical support for managing the condition and supporting decision-making about interventions. Conclusions: There is system-level variation in the provision of services and individual-level variation in how professionals make clinical decisions. As a consequence, there is inequity of access to hearing health care for children with Down syndrome. Future research should focus on developing core outcomes for research and care, and on improving decision support for families

Asthma management in British South Asian children: an application of the candidacy framework to a qualitative understanding of barriers to effective and accessible asthma care

Abstract Background In the UK, people of South Asian origin with asthma experience excess morbidity, with hospitalisation rates three times those of the majority White population and evidence suggests that South Asian children with asthma are more likely to suffer uncontrolled symptoms and hospital admissions with acute asthma compared to White British children. This paper draws on data from The Management and Interventions for Asthma (MIA) study to identify the operation of barriers to optimal care and good asthma control for South Asian children. Methods The MIA study followed a multi-phase, iterative, participatory design, underpinned by the socio-ecological model. Findings presented here are from face-to face, semi-structured interviews with South Asian (Indian, Pakistani and Bangladeshi origin) parents and carers of a child with asthma (n = 49). Interviews were conducted in English or relevant South Asian languages using specially trained community facilitators. Data were transcribed verbatim and analysed according to the principles of interpretive thematic analysis, facilitated by the use of NVivo. Results Seven dimensions of candidacy are identified: identification of candidacy; navigation; the permeability of asthma services; appearances at health services; adjudications; offers and resistance and operating conditions in the local production of candidacy. The analysis demonstrates several ways in which a potential lack of alignment between the priorities and competencies of British South Asian families and the organization of health services combine to create vulnerabilities and difficulties in effectively managing childhood asthma. Conclusions Healthcare systems have a responsibility to develop services that are sensitive and appropriate to the needs of their communities. In South Asian communities, further efforts are required to raise awareness of symptoms and effectively communicate how, when and where to seek help for children. There is a need for improved diagnosis and consistent, effectively communicated information, especially regarding medication. Parents made several suggestions for improving services: presentations about asthma at easily accessible community venues; an advice centre or telephone helpline to answer queries; opportunities for sharing experiences with other families; having information provided in South Asian languages; longer GP appointments; extended use of asthma nurses; and better education for healthcare professionals to ensure consistency of care and advice

Evaluation of temperature–pulse centile charts in identifying serious bacterial illness: observational cohort study

BACKGROUND: Distinguishing serious bacterial infection (SBI) from milder/self-limiting infections is often difficult. Interpretation of vital signs is confounded by the effect of temperature on pulse and respiratory rate. Temperature-pulse centile charts have been proposed to improve the predictive value of pulse rate in the clinical assessment of children with suspected SBI. OBJECTIVES: To assess the utility of proposed temperature-pulse centile charts in the clinical assessment of children with suspected SBI. STUDY DESIGN AND PARTICIPANTS: The predictive value for SBI of temperature-pulse centile categories, pulse centile categories and Advanced Paediatric Life Support (APLS) defined tachycardia were compared among 1360 children aged 3 months to 10 years presenting with suspected infection to a hospital emergency department (ED) in England; and among 325 children who presented to hospitals in the UK with meningococcal disease. MAIN OUTCOME MEASURE: SBI. RESULTS: Among children presenting to the ED, 55 (4.0%) had SBI. Pulse centile category, but not temperature-pulse centile category, was strongly associated with risk of SBI (p=0.0005 and 0.288, respectively). APLS defined tachycardia was also strongly associated with SBI (OR 2.90 (95% CI 1.60 to 5.26), p=0.0002). Among children with meningococcal disease, higher pulse and temperature-pulse centile categories were both associated with more severe disease (p=0.004 and 0.041, respectively). CONCLUSIONS: Increased pulse rate is an important predictor of SBI, supporting National Institute for Health and Clinical Excellence recommendations that pulse rate be routinely measured in the assessment of febrile children. Temperature-pulse centile charts performed more poorly than pulse alone in this study. Further studies are required to evaluate their utility in monitoring the clinical progress of sick children over time

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

Complementary feeding practices and nutrient intakes of children aged 6\u201324 months from Bangladeshi background living in Tower Hamlets, East London: a feasibility study

Background: The aim of this study was to assess dietary intakes and complementary feeding practices of children aged 6\u201324 months who are from Bangladeshi ancestry and living in Tower Hamlets, London, and determine the feasibility of a larger, population-representative study. Methods: Questionnaires for demographic variables and feeding practices, and 24-h dietary recalls were administered to 25 mothers to determine whether it would be feasible to conduct a similar study on a representative sample size of the same population. Data from both tools were used to determine adequacy of complementary feeding practices through the WHO indicators and an infant and child feeding index score as well as overall macronutrient and micronutrient intake. Results: Four children had varying suboptimal complementary feeding practices: two children failed to achieve the minimum dietary diversity, one child was being fed cow\u2019s milk before the age of 1 year, and one scored \u2018poor\u2019 on the infant and child feeding index. Most notably, the mean protein intake (39.7 g/day, SD 18.2) was higher than RNIs for all age groups (P = 0.001). Vitamin D intake was below recommendations (P = 0.006) for the 12\u201324-month age group. For the 10\u201312-month age group, zinc intake fell below recommendations (P = 0.028). For the 6\u20139-month combined age group, iron and zinc intakes were below recommendations (P = 0.021 and P = 0.002, respectively). Conclusions: Given the feasibility of this study, the results obtained require a large-scale study to be conducted to confirm findings. Our initial results indicated that children from Bangladeshi heritage may not be meeting nutritional requirements; thus, a future intervention tailored to the needs of the Bangladeshi population may be required to improve aspects of complementary feeding practices and nutrient intakes of those children

The Consortium on Practices of Wellbeing and Resilience in BAME Families and Communities: Children, Young People and their Families

This study explored the combined impact of the COVID-19 pandemic and racial discrimination on the lives of children, young people and families of Black, Asian and minority ethnic background (BAME). The study is part of a larger ESRC/UKRI funded project Co-POWeR - Consortium on Practices of Wellbeing and Resilience in Black Asian and Minority Ethnic Families and Communities. The consortium began from the premise that two viruses were afflicting this part of the population – not only the COVID-19 pandemic but also racial discrimination. The pandemic exposed and amplified deep-rooted structural inequalities and racial disparities in British society and there was significant evidence early on in the pandemic that Black, Asian and minority ethnic people were being impacted adversely by the pandemic compared to the rest of the population

Key considerations when involving children in health intervention design: reflections on working in partnership with South Asian children in the UK on a tailored Management and Intervention for Asthma (MIA) study

Participatory research is an empowering process through which individuals can increase control over their lives, and allows researchers/clinicians to gain a clearer understanding of a child’s needs. However, involving children in participatory research is still relatively novel, despite national and international mandates to engage children in decision making. This paper draws on the learnings from designing the Management and Intervention for Asthma (MIA) study, which used a collaborative participatory method to develop an intervention-planning framework for South Asian children with asthma. There are currently 1 million children in the UK receiving treatment for asthma, making it one of the most prevalent chronic childhood illnesses. Symptoms of asthma are often underrecognized in children from South Asian communities in the UK, contributing to increased disease severity and increased attendance at the emergency department compared to White British children. Despite this, ethnic minorities are often excluded from research and thus absent from the ‘evidence base’, making it essential to hear their perspectives if health inequalities are to be successfully addressed. We worked alongside healthcare professionals, community facilitators, parents, and children to identify the key concerns and priorities they had and then designed the framework around their needs. Reflecting on the process, we identified several key considerations that need to be addressed when co-developing interventions with children. These include the power dynamics between the parent/researcher and child; navigating the consent/assent process; how parental involvement might affect the research; establishing a convenient time and location; how to keep children engaged throughout the process; tailoring activities to different levels of ability; and accounting for cultural differences. These factors were considered by the researchers when designing the study, however, implementing them was not without its challenges and highlighted the need for researchers to develop expertise in this field. Tailoring existing research methods allowed us to explore children’s perceptions, priorities, and experiences of illness more effectively. However, involving children in participatory research is a complex undertaking, and researchers need to ensure that they have the expertise, time, and resources necessary to be able to fully support the needs of child participants before deciding to commit to this approach

Thermo-electric generation (TEG) enabled cookstoves in a rural Indian community: a longitudinal study of user behaviours and perceptions

Background: Traditional cookstoves that burn solid biomass are associated with inefficient burning, a high degree of household air pollution and high morbidity rates. A key barrier to the adoption of clean cookstoves has been the cost of fuels. Hence, a Thermo-Electric Generating (TEG) cookstove that used solid biomass fuels more efficiently and released less smoke was developed. The TEG cookstove also generates electricity to power small electric devices. Fifteen TEG cookstoves were distributed to villagers in the Indian state of Uttarakhand in 2019. / Objective: We wanted to understand whether, after two years of distribution, TEG cookstoves were still used, what and where they were used for, their perceived impacts on health, and the barriers to their use. / Methods used: We surveyed 10 of the 15 recipient households. We applied the Capability, Opportunity, Motivation-Behaviour and Behaviour Change Wheel frameworks to understand what the barriers to adoption were, and what could be done to surmount these. / Results: All respondents reported lower smoke levels and most respondents reported that the TEG cookstoves required less fuelwood than their traditional cookstoves, but none had used them in the month prior to the survey. / Discussion: For those whose TEG cookstoves were still usable and had not been made redundant by clean cookstoves, we found there to be physical opportunity barriers and psychological capability barriers. Physical opportunity barriers included a small inlet for fuel, limited versatility beyond cooking at low temperatures, and the availability of only one hob. To surmount these barriers, we recommend co-design to suit user needs and education emphasising visible benefits of avoided soot on kitchen walls, in addition to the health benefits

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

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