When a child is diagnosed with a life threatening condition, one of the most challenging tasks facing healthcare professionals is to communicate this to the child, as well as to their parents or caregivers. Evidence-based guidelines are urgently needed for all healthcare settings, from tertiary referral centres in high income countries to resource limited environments in low and middle income countries, where rates of child mortality are high. We place this narrative review in the context of children's developing understanding of illness and death. We review the impact of communication on children's emotional, behavioural and social functioning, as well as treatment adherence, disease progression and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families and healthcare professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents and caregivers, generated from a workshop of international experts. Communication with Children and Adolescents about the Diagnosis of their own Life Threatening ConditionAlan Stein (AS) conceptualized and the designed the review. Louise Dalton (LD), Lucy Hanington (LH), Kim Fredman Stein (KFS) and AS undertook the literature searches and selected the studies. AS, LD and Elizabeth Rapa (ER) gathered the information from the studies and drafted the manuscript. Myra Bluebond-Langner (MBL), Sue Ziebland (SZ), Emily Harrop (EH), Ruth Bland (RB), Brenda Kelly (BK), Tamsen Rochat (TR) and KFS provided specific input to different sections of the manuscript; Communication Expert Group commented on drafts of the manuscript and contributed to the development of the guidelines. LD and ER compiled the tables. All authors have read and approved the final version of the Review. Conflict of Interest statementsEH declares she is deputy chair of the NICE clinical guideline development committee for NG61 (End of Life Care in Infants, Children and Young People). All of the other authors declare no Conflicts of Interest Role of funding sourceThe funder of the study had no role in any aspect of the review.
BackgroundThe World Health Organization recommends that human growth should be monitored with the use of international standards. However, in obstetric practice, we continue to monitor fetal growth using numerous local charts or equations that are based on different populations for each body structure. Consistent with World Health Organization recommendations, the INTERGROWTH-21st Project has produced the first set of international standards to date pregnancies; to monitor fetal growth, estimated fetal weight, Doppler measures, and brain structures; to measure uterine growth, maternal nutrition, newborn infant size, and body composition; and to assess the postnatal growth of preterm babies. All these standards are based on the same healthy pregnancy cohort. Recognizing the importance of demonstrating that, postnatally, this cohort still adhered to the World Health Organization prescriptive approach, we followed their growth and development to the key milestone of 2 years of age.ObjectiveThe purpose of this study was to determine whether the babies in the INTERGROWTH-21st Project maintained optimal growth and development in childhood.Study DesignIn the Infant Follow-up Study of the INTERGROWTH-21st Project, we evaluated postnatal growth, nutrition, morbidity, and motor development up to 2 years of age in the children who contributed data to the construction of the international fetal growth, newborn infant size and body composition at birth, and preterm postnatal growth standards. Clinical care, feeding practices, anthropometric measures, and assessment of morbidity were standardized across study sites and documented at 1 and 2 years of age. Weight, length, and head circumference age- and sex-specific z-scores and percentiles and motor development milestones were estimated with the use of the World Health Organization Child Growth Standards and World Health Organization milestone distributions, respectively. For the preterm infants, corrected age was used. Variance components analysis was used to estimate the percentage variability among individuals within a study site compared with that among study sites.ResultsThere were 3711 eligible singleton live births; 3042 children (82%) were evaluated at 2 years of age. There were no substantive differences between the included group and the lost-to-follow up group. Infant mortality rate was 3 per 1000; neonatal mortality rate was 1.6 per 1000. At the 2-year visit, the children included in the INTERGROWTH-21st Fetal Growth Standards were at the 49th percentile for length, 50th percentile for head circumference, and 58th percentile for weight of the World Health Organization Child Growth Standards. Similar results were seen for the preterm subgroup that was included in the INTERGROWTH-21st Preterm Postnatal Growth Standards. The cohort overlapped between the 3rd and 97th percentiles of the World Health Organization motor development milestones. We estimated that the variance among study sites explains only 5.5% of the total variability in the length of the children between...
Background: Despite public perception to the contrary, pregnancy does not offer a protective effect for suicide ideation. In low and middle income countries (LMIC) multiple concurrent risk factors including unplanned pregnancies, testing for HIV, intimate partner violence and depression may increase suicide risk among pregnant women. We examine suicide ideation among women attending routine antenatal care in rural South Africa. Method: A consecutive series of 109 women in the second half of pregnancy were enrolled in a cross-sectional study at a large primary health care facility in a rural area of KwaZulu-Natal with high HIV prevalence. Using a mixed-methods approach, women were assessed using the
The etiologic complexities of preterm birth remain inadequately understood, which may impede the development of better preventative and treatment measures. OBJECTIVE To examine the association between specific preterm-birth phenotypes and clinical, growth, and neurodevelopmental differences among preterm newborns compared with term newborns up to age 2 years. DESIGN, SETTING, AND PARTICIPANTS The INTERBIO-21st study included a cohort of preterm and term newborn singletons enrolled between March 2012 and June 2018 from maternity hospitals in 6 countries worldwide who were followed up from birth to age 2 years. All pregnancies were dated by ultrasonography. Data were analyzed from November 2019 to October 2020. EXPOSURES/INTERVENTIONS Preterm-birth phenotypes. MAIN OUTCOMES AND MEASURES Infant size, health, nutrition, and World Health Organization motor development milestones assessed at ages 1 and 2 years; neurodevelopment evaluated at age 2 years using the INTERGROWTH-21st Neurodevelopment Assessment (INTER-NDA) tool. RESULTS A total of 6529 infants (3312 boys [50.7%]) were included in the analysis. Of those, 1381 were preterm births (mean [SD] gestational age at birth, 34.4 [0.1] weeks; 5148 were term births (mean [SD] gestational age at birth, 39.4 [0] weeks). Among 1381 preterm newborns, 8 phenotypes were identified: no main maternal, fetal, or placental condition detected (485 infants [35.1%]); infections (289 infants [20.9%]); preeclampsia (162 infants [11.7%]); fetal distress (131 infants [9.5%]); intrauterine growth restriction (110 infants [8.0%]); severe maternal disease (85 infants [6.2%]); bleeding (71 infants [5.1%]); and congenital anomaly (48 infants [3.5%]). For all phenotypes, a previous preterm birth was a risk factor for recurrence. Each phenotype displayed differences in neonatal morbidity and infant outcomes. For example, infants with the no main condition detected phenotype had low neonatal morbidity but increased morbidity and hospitalization incidence at age 1 year (odds ratio [OR], 2.2; 95% CI, 1.8-2.7). Compared with term newborns, the highest risk of scoring lower than the 10th centile of INTER-NDA normative values was observed in the fine motor development domain among newborns with the fetal distress (OR, 10.6; 95% CI, 5.1-22.2) phenotype. CONCLUSIONS AND RELEVANCE Results of this study suggest that phenotypic classification may provide a better understanding of the etiologic factors and mechanisms associated with preterm birth than continuing to consider it an exclusively time-based entity.
ObjectiveTo assess the impact of being born preterm or small for gestational age (SGA) on several adult outcomes.Study designWe analyzed data for 4518 adult participants in 5 birth cohorts from Brazil, Guatemala, India, the Philippines, and South Africa.ResultsIn the study population, 12.8% of males and 11.9% of females were born preterm, and 26.8% of males and 22.4% of females were born term but SGA. Adults born preterm were 1.11 cm shorter (95% CI, 0.57-1.65 cm), and those born term but SGA were 2.35 cm shorter (95% CI, 1.93-2.77 cm) compared with those born at term and appropriate size for gestational age. Blood pressure and blood glucose level did not differ by birth category. Compared with those born term and at appropriate size for gestational age, schooling attainment was 0.44 years lower (95% CI, 0.17-0.71 years) in those born preterm and 0.41 years lower (95% CI, 0.20-0.62 years) in those born term but SGA.ConclusionBeing born preterm or term but SGA is associated with persistent deficits in adult height and schooling, but is not related to blood pressure or blood glucose level in low- and middle-income settings. Increased postnatal growth is associated with gains in height and schooling regardless of birth status, but not with increases in blood pressure or blood glucose level.
The COVID-19 pandemic has adversely affected the health and wellbeing of millions of children around the world. Beyond the direct clinical impacts of COVID-19, measures to contain the spread of disease have left nearly 1.6 billion preprimary through post-secondary students-more than 90% of those enrolled-at least
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