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This fully revised and updated resource helps teachers and caregivers address the challenges of caring for children with chronic health conditions and special health care needs in child care and school settings. The health issues covered include chronic illnesses, acute situations, and selected developmental and behavioral problems, with a special emphasis on children with special health care needs. More than 50 quick reference sheets on specific conditions provide teachers and caregivers with guidance on how to help at a glance. New quick reference sheets include Childhood Obesity, Eczema, Fetal Alcohol Spectrum Disorder, Food Allergies, Gastroesophageal Reflux Disease, and more. The guide addresses topics with universal relevancy such as Care Plan development and implementation, medication administration, emergency planning, and handling symptoms that develop while on-site. Also included are ready-to-use sample forms, letters, and Care Plans, for easy implementation.

This book provides a guide to promoting the psychological well-being of children with chronic illnesses and medical conditions, covering support within health, social services and education. It discusses issues such as the impact of diagnosis and the experiences of children and their families in managing their medical condition and treatment.

Children and young people suffering from long-term conditions require continuing support and nursing care throughout their lives. Nursing Care of Children and Young People with Chronic Illness explores chronic disease management in the context of recent developments, including the National Service Framework for Children. It addresses the aetiology of chronic illness and the impact on the child's family. It also explores holistic approaches to caring for their social, physical and psychological needs, and highlights the importance of the nurse's role in promoting children and their parents as 'expert patients'. Nursing Care of Children and Young People with Chronic Illness is a comprehensive, up-to-date resource for nursing students and practitioners on the context, theory and practice of assessing health needs, and the delivery of holistic care and services within a variety of care settings, to enable them to meet the changing needs of children and young people with chronic illnesses and diseases, and their families. The first nursing-specific text related to the care of children young people with chronic illness Incorporates case studies scenarios throughout to enable readers to gain an understanding of the application of concepts theories in practice Covers care aspects of the child and young person in different settings including tertiary, secondary, primary health care and the home Written in the context of the NSF for Children

The second edition of Nursing Care of Children and Young People with Long Term Conditions remains the only nursing-specific text on the care of paediatric patients with chronic illness. Written to meet the needs of nursing students and professionals alike, this comprehensive volume provides authoritative and up-to-date information on the context, theory, and practice of delivering holistic care to children and families in a range of health and social care settings. Contributions from a team of experienced academics, educators, and practitioners offer valuable insight into the impact of chronic illness on children and parents, the practical implications of meeting their physical, psychological, and social needs, empowering them to be 'experts' in their care, and many more vital aspects of long-term paediatric care. This edition features new and revised content reflecting contemporary guidelines and evidence-based practice, including updated clinical case studies and a new chapter examining the impact of having a sibling with a long-term condition. Emphasising a multi-disciplinary approach to managing chronic illness, this important resource: * Provides numerous case studies and activities illustrating the application of theoretical principles and current evidence in nursing practice * Investigates the genetic basis of chronic illness and the differing onsets of long-term conditions * Discusses current political, economic, and social policies that are influencing healthcare for children and bringing challenges to managers and practitioners * Examines both classic and contemporary theories of grief, loss, coping, and adaptation Explores ethical, legal, and professional aspects of nursing children and young people with chronic illness * Addresses evolving nursing roles, the importance of acute emergency care, and the planning and delivery of effective transition from child to adult services Nursing Care of Children and Young People with Long Term Conditions is required reading for student and registered children's nurses, as well as for practitioners in related health and social care disciplines.

Moral Laboratoriesis an engaging ethnography and a groundbreaking foray into the anthropology of morality. It takes us on a journey into the lives of African American families caring for children with serious chronic medical conditions, and it foregrounds the uncertainty that affects their struggles for a good life. Challenging depictions of moral transformation as possible only in moments of breakdown or in radical breaches from the ordinary, it offers a compelling portrait of the transformative powers embedded in day-to-day existence. From soccer fields to dinner tables, the everyday emerges as a moral laboratory for reshaping moral life. Cheryl Mattingly offers vivid and heart-wrenching stories to elaborate a first-person ethical framework, forcefully showing the limits of third-person renderings of morality.

For over two years, the global COVID-19 pandemic has forced major transformations on health, social, and educational systems, with concomitant impacts on mental health. This study aimed to understand the unique and additional challenges faced by children with chronic illness and their families during the COVID-19 era. Parents of children receiving treatment for a chronic illness within the neurology, cancer, renal and respiratory clinics of Sydney Children's Hospital were invited to participate. We used qualitative methodology, including a semi-structured interview guide, verbatim transcription, and thematic analysis supported by QSR NVivo. Thirteen parents of children receiving tertiary-level care, for nine chronic illnesses, participated. Parents reported intense fears relating to their ill child's additional vulnerabilities, which included their risk of developing severe COVID-19 disease and the potential impact of COVID-19-related disruptions to accessing clinical care, medications, allied health support and daily care protocols should their parent contract COVID-19. Parents perceived telehealth as a highly convenient and preferred method for ongoing management of less complex healthcare needs. Parents reported that the accrual of additional stressors and responsibilities during the pandemic, experienced in combination with restricted social interaction and reduced access to usual support networks was detrimental to their own mental health. Hospital-based visitation restrictions reduced emotional support, coping, and resilience for both parents and children and in some cases led to marital discord, sibling distress, and financial loss. Supportive factors included increased time spent together at home during the pandemic and improved hygiene practices at school, which dramatically reduced the incidence of non-COVID-19-related communicable illnesses in chronically ill children. For families caring for a chronically ill child, COVID-19 made a difficult situation harder. The pandemic has highlighted the need for targeted psychosocial intervention for vulnerable families, to mitigate current mental health burden and prevent chronic psychological distress.

The D1Ce Screen pilot study stems from the Italian Republic Law 130/2023 introducing the screening based on autoantibody measurement on capillary blood for the identification of people in pre-symptomatic, early phase of type 1 diabetes (T1D) and/or having silent celiac disease (CD) in the general paediatric population to reduce the impact of the two more frequent and severe chronic diseases of childhood. Primary aim is to assess, on a smaller scale, the organizational feasibility, acceptability and sustainability by the National Health Service of the screening program to be conducted nationwide in Italy according to the law. This is an observational multicenter study, planning to screen 5,363 children from four Italian regions (Lombardy, Marche, Campania, Sardinia), proportionally distributed according to population of the single Regions, representative of the North, Centre, South and Islands of Italy. Participants are screened by autoantibodies within three classes of age 2-2.9, 6-6.9, and 10-10.9 years, corresponding to reported peaks of seroconversion, in order to maximize the identification of future cases of disease. HLA typing for HLA DQ2 and DQ8 is also performed for CD risk in dry blood spots (DBS). Screening procedures are conducted by primary care paediatricians (PCPs), responsible for: direct contact with families; information about the study; administration of written informed consent, privacy statement and questionnaires; execution of blood drawing by finger prick; capillary blood collection for autoantibody and HLA testing and shipment to the central laboratory. Feasibility, acceptability and sustainability will be estimated by number of participating paediatricians; screened children in the four Regions and within the classes of age; feedback questionnaires; number of fingerpicks to obtain sufficient capillary blood for assays; any adverse events; costs evaluation in relation to assigned budget. Secondary objectives include frequency of T1D and CD specific autoantibodies to assess the prevalence of pre-symptomatic (Stage 1 and Stage 2) TD1 and undiagnosed CD in the three classes of age of general paediatric population. D1Ce Screen is not registered to any International Study Registry, as it is a pilot observational study requested by the Italian law 130/2023.

Advances in digital medicine now make it possible to use digital twin systems (DTS), which combine (1) extensive patient monitoring through the use of multiple sensors and (2) personalized adaptation of patient care through the use of software. After the artificial pancreas system already operational in children with type 1 diabetes, new DTS could be developed for real-time monitoring and management of children with chronic diseases. Just as providing care for children is a specific discipline—pediatrics—because of their particular characteristics and needs, providing digital care for children also presents particular challenges. This article reviews the technical challenges, mainly related to the problem of data collection in children; the ethical challenges, including the need to preserve the child's place in their care when using DTS; the legal challenges and the dual need to guarantee the safety of DTS for children and to ensure their access to DTS; and the societal challenges, including the needs to maintain human contact and trust between the child and the pediatrician and to limit DTS to specific uses to avoid contributing to a surveillance society and, at another level, to climate change.

Background There is consistent evidence that the COVID-19 pandemic is associated with an increased psychosocial burden on children and adolescents and their parents. Relatively little is known about its particular impact on high-risk groups with chronic physical health conditions (CCs). Therefore, the primary aim of the study is to analyze the multiple impacts on health care and psychosocial well-being on these children and adolescents and their parents. Methods We will implement a two-stage approach. In the first step, parents and their underage children from three German patient registries for diabetes, obesity, and rheumatic diseases, are invited to fill out short questionnaires including questions about corona-specific stressors, the health care situation, and psychosocial well-being. In the next step, a more comprehensive, in-depth online survey is carried out in a smaller subsample. Discussion The study will provide insights into the multiple longer-term stressors during the COVID-19 pandemic in families with a child with a CC. The simultaneous consideration of medical and psycho-social endpoints will help to gain a deeper understanding of the complex interactions affecting family functioning, psychological well-being, and health care delivery. Trial registration German Clinical Trials Register (DRKS), no. DRKS00027974. Registered on 27th of January 2022.

Quantifying movement behaviours over 24-hours enables the combined effects of and inter-relations between sleep, sedentary time and physical activity (PA) to be understood. This is the first study describing 24-hour movement behaviours in school-aged children and adolescents in South-East Asia. Further aims were to investigate between-participant differences in movement behaviours by demographic characteristics and timing of data collection during Ramadan and COVID-19 restrictions. Data came from the South-East Asia Community Observatory health surveillance cohort, 2021-2022. Children aged 7-18 years within selected households in Segamat, Malaysia wore an Axivity AX6 accelerometer on their wrist for 24 hours/day over 7 days, completed the PAQ-C questionnaire, and demographic information was obtained. Accelerometer data was processed using GGIR to determine time spent asleep, inactive, in light-intensity PA (LPA) and moderate-to-vigorous PA (MVPA). Differences in accelerometer-measured PA by demographic characteristics (sex, age, ethnicity, socioeconomic group) were explored using univariate linear regression. Differences between data collected during vs outside Ramadan or during vs after COVID-19 restrictions, were investigated through univariate and multiple linear regressions, adjusted for age, sex and ethnicity. The 491 participants providing accelerometer data spent 8.2 (95% confidence interval (CI) = 7.9-8.4) hours/day asleep, 12.4 (95% CI = 12.2-12.7) hours/day inactive, 2.8 (95% CI = 2.7-2.9) hours/day in LPA, and 33.0 (95% CI = 31.0-35.1) minutes/day in MVPA. Greater PA and less time inactive were observed in boys vs girls, children vs adolescents, Indian and Chinese vs Malay children and higher income vs lower income households. Data collection during Ramadan or during COVID-19 restrictions were not associated with MVPA engagement after adjustment for demographic characteristics. Demographic characteristics remained the strongest correlates of accelerometer-measured 24-hour movement behaviours in Malaysian children and adolescents. Future studies should seek to understand why predominantly girls, adolescents and children from Malay ethnicities have particularly low movement behaviours within Malaysia.