Childhood Chronic Illness Research Articles

Caring Under Pressure: Investigating Parental Attitudes in Mother–Child Chronic Illness Dynamics

Background: The presence of chronic illnesses in both a mother and a child poses a significant challenge for mothers in managing these conditions, yet how maternal attitudes adapt to dual illness remains poorly understood. This study aims to explore parenting styles in families dealing with mother–child chronic illnesses. Methods: Mothers of children aged 2–6 were recruited from three pediatric clinics and categorized based on the health status of both the mother and the child. Data collection included case files and the Parental Attitude Scale (PAS), which assessed democratic, authoritarian, overprotective, and permissive attitudes. The interaction between mother–child health status and higher levels of parental subscales was analyzed using the chi-square test. Multiple logistic regression analysis was then performed to evaluate this interaction, controlling for confounding baseline characteristics. Results: In total, 878 mother–child pairs were included. Mothers exhibited varying attitudes based on education, employment, and the child’s age. Chronic illness in both mother and child and only the child having an illness were significantly associated with higher overprotective scores (p < 0.001). The percentage of mothers with high permissive scores was higher when only the mother had an illness and when both were healthy, compared to the case of both mother and child having an illness (p = 0.018). After adjusting for confounding factors, having a sick child showed a 1.6-fold increase in the likelihood of a high overprotective score, and both the mother and child having an illness showed a 2.94-fold increase. Similarly, after adjusting for the same confounding factors, the likelihood of a high permissive score was 2.56 times lower when both were ill compared to when both were healthy. Conclusions: This study reveals that when a child is affected by a chronic illness—whether or not the mother is also ill—mothers tend to exhibit higher levels of overprotection and lower levels of permissiveness, while their levels of authoritarianism and democratic attitudes in parenting remain relatively stable.

Importance of Studying Non-Coding RNA in Children and Adolescents with Type 1 Diabetes.

Type 1 diabetes (T1D) mellitus is a chronic illness in children and teens, with rising global incidence rates. It stems from an autoimmune attack on pancreatic β cells, leading to insufficient insulin production. Genetic susceptibility and environmental triggers initiate this process. Early detection is possible by identifying multiple autoantibodies, which aids in predicting future T1D development. A new staging system highlights T1D's onset with islet autoimmunity rather than symptoms. Family members of T1D patients face a significantly increased risk of T1D. Italy recently passed a law mandating national T1D screening for pediatric populations. Measurements of β cell function continue to be essential in assessing efficacy, and different models have been proposed, but more appropriate biomarkers are mandatory for both progression studies before the onset of diabetes and during therapeutic monitoring. Biomarkers like microRNAs (miRNAs), long non-coding RNAs (lncRNAs), and circular RNAs (circRNAs) play key roles in T1D pathogenesis by regulating gene expression. Understanding their roles offers insights into T1D mechanisms and potential therapeutic targets. In this review, we summarized recent progress in the roles of some non-coding RNAs (ncRNAs) in the pathogenesis of T1D, with particular attention to miRNAs, lncRNAs, and circRNAs.

An Overview of Integrated Risk Factors with Prevention and Prevalence of Asthma at the Global Level

Abstract: Bronchial asthma is one of the most common chronic illnesses in childhood, adulthood and pregnancy with a current occurrence of 6-9 percent, but at an alarming rate of increase. Asthma is a complex genetic disorder that is heavily affected by the environment. In association with significant morbidity, quality of life, and healthcare costs, it is putting an increasing strain on our society. Some factors related to pregnancy, i.e., diet-related, antibiotic uses, and stress; childhood risk factors, i.e., lung function, exposure to smoking, animal etc. and adulthood risk factor, i.e., pollution-related etc., are responsible for trends in incidence and mortality due to asthma at a Global level and Indian population. Data were collected from PubMed, Web of Sciences, CINHAL, WHO Clinical trial register, Google Scholar, and official websites of various asthma societies and statistically analyzed using ANOVA tests. Data were analyzed for India and the specific population of the northern region of India during the last five years. Risk factors related to asthma at different stages, i.e., genetic, pregnancy, childhood, and adulthood, were reviewed, and the prevalence of asthma at the Global level, India and northern India, was analyzed and compared. The mean Global prevalence of asthma was found to be 281.3±14.7 (SD), whereas, for India, it was 22.78±8.605. After applying One Way ANOVA, a significant difference (t=48.44, df=4) was found between the Global and Indian prevalence of asthma, i.e., the mean difference of 259.7±11.99. The mean value was found highest in Delhi and Rajasthan, having values of 19.74±11.79 and 13.58±9.47, whereas Chandigarh and Uttar Pradesh recorded asthma’s prevalence as 11.87±7.83 and 4.32±2.32 respectively. Himachal and Haryana acquired almost equal values of asthma at 1.67±0.13 and 1.23±0.33. Abstract: Bronchial asthma is one of the most common chronic illnesses in childhood, adulthood and pregnancy with a current occurrence of 6-9 percent, but at an alarming rate of increase. Asthma is a complex genetic disorder that is heavily affected by the environment. In association with significant morbidity, quality of life, and healthcare costs, it is putting an increasing strain on our society. Some factors related to pregnancy, i.e., diet-related, antibiotic uses, and stress; childhood risk factors, i.e., lung function, exposure to smoking, animal etc. and adulthood risk factor, i.e., pollutionrelated etc., are responsible for trends in incidence and mortality due to asthma at a Global level and Indian population. Data were collected from PubMed, Web of Sciences, CINHAL, WHO Clinical trial register, Google Scholar, and official websites of various asthma societies and statistically analyzed using ANOVA tests. Data were analyzed for India and the specific population of the northern region of India during the last five years. Risk factors related to asthma at different stages, i.e., genetic, pregnancy, childhood, and adulthood, were reviewed, and the prevalence of asthma at the Global level, India and northern India, was analyzed and compared. The mean Global prevalence of asthma was found to be 281.3±14.7 (SD), whereas, for India, it was 22.78±8.605. After applying One Way ANOVA, a significant difference (t=48.44, df=4) was found between the Global and Indian prevalence of asthma, i.e., the mean difference of 259.7±11.99. The mean value was found highest in Delhi and Rajasthan, having values of 19.74±11.79 and 13.58±9.47, whereas Chandigarh and Uttar Pradesh recorded asthma’s prevalence as 11.87±7.83 and 4.32±2.32 respectively. Himachal and Haryana acquired almost equal values of asthma at 1.67±0.13 and 1.23±0.33.

The Role of Occupational Therapy in Supporting Youth with Asthma: Therapist Perspectives

Occupational therapists address physical environments, which can improve outcomes for youth with asthma, a prevalent chronic childhood illness. This study examines pediatric occupational therapists’ perceptions of their role supporting youth with asthma, perceived usability of an occupational therapy asthma home assessment, and the impact of asthma on participation. A cross-sectional exploratory survey of 171 participants found that despite lack of tools for asthma trigger reduction assessment and intervention, therapists believe it is within their scope of practice and that they would benefit from an occupational therapy-based asthma tool. Occupational therapists should be members of multidisciplinary asthma teams, and assess and address environmental triggers.

Comparative analysis of pediatric rheumatic patient growth patterns against norms: A cross-sectional study conducted in an Eastern Indian hospital

Background. Juvenile idiopathic arthritis (JIA) is the most common rheumatic disease. Rheumatic diseases are a major cause of chronic illness in children around the world. SLE is a further prevalent inflammatory illness. Aims and objectives. To study different growth parameters of pediatric patients attending pediatric rheumatology clinic, to compare the growth parameters with age and sex matched controls and to compare growth among different types of pediatric rheumatic patients. Method. Different growth parameters and SMI (for children above 9 years) were recorded for patients attending pediatric rheumatology OPD having disease duration more than one year. Results. Among 121 patients, JIA was most common followed by SLE. Among JIA subtypes, SOJIA is most common. Mean age of presentation was earlier in SOJIA, late in JoAS. SLE patients had larger duration of illness prior to diagnosis than JIA patients. In JIA patients, mean height was significantly less than controls. SOJIA and polyarticular variety had significantly less weight and height compared to controls. SLE patients had significantly less weight and height compared to control. Anthropometric parameters were significantly more in SLE patients compared to JIA cohort. There was significantly more delayed puberty both in JIA and SLE patients compared to controls. Conclusion. JIA was most common, followed by SLE. Among JIA patients SOJIA variety was most common, JIA patients had significantly lower height than controls. SLE patients had significantly lower weight and height than controls. Delayed puberty was significantly more in both JIA and SLE patients compared to controls.

Changing contexts of child health: an assessment of unmet physical, psychological and social needs of children with common chronic childhood illness

BackgroundWe assessed the biopsychosocial needs and key health drivers among children living with a common chronic illness, as baseline for a cluster randomised controlled trial of a child health system...

Beyond Diagnosis: Preliminary Study of Impact on Children and Parents in Neurodevelopmental Disorders and Juvenile Idiopathic Arthritis-Associated Uveitis

Chronic diseases are a growing problem for global health due to the large number of people they involve, the repercussions they have on the mental and physical well-being of those affected, and the costs to society. Particularly, chronic illnesses of childhood have important psychological implications, not only for affected children but also for their parents. Among these pathologies, neurodevelopmental disorders (NDDs) and uveitis associated with juvenile idiopathic arthritis (JIA-U) may affect mental and physical health, emotions, memory, learning, and socializing. This study evaluates the psychological and behavioral/emotional impact of NDDs and JIA-U on children and parents. Specifically, 30 children with active JIA-U and 30 children with NDDs and their parents completed the Child Behavior Checklist (CBCL) and Parent Stress Index—Short Form (PSI) questionnaires. Children with NDDs have statistically significant differences in all the emotional and behavioral variables compared to JIA-U children, and parents of children with NDDs experience an increased stress load compared to parents of children with JIA-U. This study emphasizes the wide range of emotional and behavioral challenges that parents face with NDDs. This study emphasizes that parents of children with NDDs not only experience higher levels of stress compared to parents of normally developing children but also experience higher levels of stress compared to parents of children with potentially debilitating chronic diseases such as JIA-U.

Impact of family socioeconomic position on childhood asthma outcomes, severity, and specialist referral - a Danish nationwide study.

Asthma is the most common chronic illness in children, carrying a major burden. Socioeconomic position (SEP) affects adult asthma outcomes, but its impact on childhood asthma, particularly in primary versus specialist care, has not been studied thoroughly. In a Danish cohort consisting of all children aged 2-17years redeeming inhaled corticosteroids in 2015, parental SEP impact on asthma outcomes was investigated. Workforce attachment, income, education, and metropolitan residence were chosen as covariates in logistic regression. Outcomes were uncontrolled (excessive use of short-acting beta2-agonists), exacerbating (oral corticosteroid use or hospitalization), and severe asthma (according to GINA 2020). The cohort comprised 29,851 children (median age 8.0, 59% boys). 16% had uncontrolled asthma, 8% had ≥1 exacerbation. Lower income and metropolitan residence correlated with higher odds of poor control, exacerbations, and severe asthma. Lower education correlated with worse asthma outcomes. Education and income were protective factors in primary care, but not in specialist care. Metropolitan residence was the sole factor linked to specialist care referral for severe asthma. Low parental SEP and metropolitan residence associated with poor asthma outcomes. However, specialist care often mitigated these effects, though such care was less likely for at-risk children in non-metropolitan areas.

Psychosocial Outcomes of Parents of Children with Hirschsprung Disease Beyond Early Childhood

PurposeThe lifelong impact of Hirschsprung disease (HD) upon children and their families is increasingly well recognized. Parental psychosocial wellbeing and family functioning are determinants of psychological and health-related outcomes in children with chronic conditions. We performed a cross-sectional cohort study to evaluate the psychosocial functioning of parents/caregivers of children with HD, beyond early childhood. MethodsParents/caregivers of children with HD, aged 4–14 years, managed at a tertiary pediatric surgical center were surveyed. Parent psychosocial outcomes, including adjustment to illness and family response, were assessed using four validated measures: Family Management Measure (FaMM); Parent Experience of Child Illness (PECI); Patient Reported Outcomes Measurement Information System (PROMISR) anxiety; and PROMISR depression. The Pediatric Quality of Life Inventory (PedsQL) was administered to assess child quality of life (proxy-report). ResultsForty parents (mean age 38.7 ± 5.6 years) of children with HD (mean age 8.0 ± 2.5) participated. Parents expressed greater long-term uncertainty (PECI) and poorer perceived condition management ability (FaMM) than comparator chronic disease cohorts. Other scores for parental adjustment to their child's condition (PECI) and family response (FaMM) were comparable to reference cohorts. Symptoms of anxiety and depression were prevalent in our cohort (52.5 % and 42.5 % respectively); however, the proportion with moderate - severe PROMISR anxiety (χ2 = 2.50, p = 0.114) and depression (χ2 = 0.156, p = 0.693) scores did not significantly differ from the expected population distribution. Proxy-reported child quality of life (PedsQL) was significantly reduced relative to healthy children (p = 0.0003), but comparable to those with physical health problems with special healthcare needs (p = 0.624). ConclusionsParents of children with HD experience long-term uncertainty and have poorer perceived condition management ability than parents of children with other chronic childhood illnesses. This work highlights the importance of targeted parental education and support beyond primary surgical management, and provides a benchmark for this cohort, against which subsequent intervention-based studies may be assessed. Level of evidenceII.

SAT126 Relationship Between Type I Diabetes And Depression In The Pediatric Population

Abstract Disclosure: L.B. Greenblatt: None. M. Epelman: None. S. Demissie: None. Introduction: Type 1 diabetes mellitus (T1DM) is one of the most common chronic illnesses in children. Depression in children and adolescents with T1DM has been associated with negative diabetes related health outcomes, such as recurrent diabetes ketoacidosis. These associations can be bidirectional, where poor glycemic control can worsen symptoms of depression. Adolescents with T1DM and depression pose additional challenges to health care providers due to non-adherence to diabetes management. Objective: The aim of this study is to investigate the relationship between depression and age of onset, duration and T1DM control. We hypothesized that duration of diabetes mellitus positively correlates with depression symptoms. Patients diagnosed with T1DM in adolescence have higher depression scores compared to individuals diagnosed at a younger age. Methods: Individuals with T1DM 11 to 21 years old enrolled in the study. Patients with known psychiatric illnesses and intellectual disabilities were excluded. After obtaining informed consent and assent, participants were asked to complete age specific depression screening form PHQ-9. Forms were immediately scored by the investigator. Patients with moderate symptoms (score of 10 to 14) are provided a list of local mental health resources and individuals with severe depressive symptoms (score > 15) were referred to a pediatric psychiatrist for evaluation. Data on age, sex, ethnicity, age at diagnosis, diabetes duration, recent glycosylated hemoglobin (HbA1C), treatment methods (insulin pump vs injections) and continuous glucose monitor use were collected from patients’ electronic health records. Results: 34 patients, 61.7% female, were screened thus far. The mean age was 16 years and average age at diagnosis was 8 years. 22% of patients were on multiple daily injections and 78% on insulin pump therapy. Most patients (88%) were using continuous glucose monitors. Despite long term care, the average HbA1c was 8%. Girls had higher average PHQ-9 score (7.24) compared to boys (3.69). As expected, high PHQ-9 score was associated with poor diabetes control (r=0.35, p=0.044). There was a positive correlation between PHQ-9 score and duration of T1DM and negative correlation between PHQ-9 score and age at onset (p>0.05). Conclusion: Children and adolescents with T1DM are at risk of depression. Younger age of onset and longer duration of T1DM was associated with higher severity of depression symptoms as evident by PQH-9 score. Poor control, defined by high HbA1C, is positively correlated with depression score. Screening for depression and proper referral should be integrated into routine care for children and adolescents with T1DM. Presentation: Saturday, June 17, 2023

Current Validated Clinical and Patient Reported Disease Outcome Measures in Juvenile Idiopathic Arthritis.

Juvenile idiopathic arthritis (JIA) is a common chronic illness in childhood and comprises seven categories based on the International League of Associations for Rheumatology (ILAR) criteria. Accurate assessment and measurement of the clinical, functional, and quality of life outcomes of patients with JIA are paramount for understanding the disease course and formulating effective treatment strategies. Interest in the development and use of outcome measurements specifically focused on rheumatologic conditions has greatly expanded over the last two decades, adding to and improving upon the established disease measures. Furthermore, many of these measures have been validated using the widely accepted Outcome Measures in Rheumatology (OMERACT) core principles of instrument validation, allowing researchers and clinicians to gain confidence in these tools. This review summarizes the current validated disease outcome measures in JIA, including clinical, imaging, patient-reported, and functional outcome measurement tools, and highlights ongoing work that continues to refine and improve upon the available tools. The clinical disease outcome measures discussed in this review include physician global assessment (PhGA), American College of Rheumatology (ACR, Wallace) criteria for clinical inactive disease and clinical remission, juvenile arthritis disease activity scores (JADAS), juvenile spondyloarthritis disease activity index (JSPaDA), juvenile arthritis damage index (JADAI), and the ACR pediatric response scores. The imaging outcome measures discussed include the Dijkstra composite scores, childhood arthritis radiographic score of the hip (CARSH), and Poznanski Score. The patient-reported disease outcome measures discussed include patient global assessment (PtGA), patient-reported outcome measurement information system for JIA (PROMIS), juvenile arthritis parent/child centered disease assessment index (JAPAI, JACAI), juvenile arthritis multidimensional assessment report (JAMAR), and the Pediatric quality of life inventory rheumatology module (PedsQL). The functional outcome tools discussed include the Childhood Health Assessment Questionnaire (CHAQ), juvenile arthritis functionality scale and index (JAFS and JASI), and Juvenile Arthritis Functional Assessment Report and Scale (JAFAS and JAFAR).

Juvenile Idiopathic Arthritis.

Juvenile idiopathic arthritis (JIA) comprises a group of heterogenous disorders characterized by childhood-onset chronic joint inflammation. It is the most common rheumatologic disease in the pediatric population and an important cause of chronic illness in children. Early recognition and treatment are vital to prevent sequelae of uncontrolled inflammation on the developing skeleton. JIA can have significant complications that general pediatricians should be aware of, especially uveitis, which can be insidious and asymptomatic in very young children, and macrophage activation syndrome, which can be life-threatening if not recognized and appropriately treated. Although advances have been made in the past few decades, the etiology of JIA remains incompletely understood. Efforts are underway to refine the classification of JIA. The currently accepted classification scheme identifies subsets of JIA that are important clinically in terms of prognosis and tailoring treatment approaches. However, it is limited in identifying homogenous groups of children with early childhood onset and antinuclear antibody positivity, which may have different pathogenic mechanisms that could be important in developing more targeted and effective treatment approaches in the future. Treatment strategies for JIA have changed significantly in recent years with the availability of multiple newer targeted therapies, often modeled after medications used in adult-onset forms of arthritis. These treatments, and likely many others to come, have markedly improved symptom control and reduced complications in patients with JIA.

Conditional knockout of ITGB4 in bronchial epithelial cells directs bronchopulmonary dysplasia.

Neonatal respiratory system disease is closely associated with embryonic lung development. Our group found that integrin β4 (ITGB4) is downregulated in the airway epithelium of asthma patients. Asthma is the most common chronic respiratory illness in childhood. Therefore, we suspect whether the deletion of ITGB4 would affect fetal lung development. In this study, we characterized the role of ITGB4 deficiency in bronchopulmonary dysplasia (BPD). ITGB4 was conditionally knocked out in CCSP-rtTA, Tet-O-Cre and ITGB4f/f triple transgenic mice. Lung tissues at different developmental stages were collected for experimental detection and transcriptome sequencing. The effects of ITGB4 deficiency on lung branching morphogenesis were observed by fetal mouse lung explant culture. Deleting ITGB4 from the airway epithelial cells results in enlargement of alveolar airspaces, inhibition of branching, the abnormal structure of epithelium cells and the impairment of cilia growth during lung development. Scanning electron microscopy showed that the airway epithelial cilia of the β4ccsp.cre group appear to be sparse, shortened and lodging. Lung-development-relevant factors such as SftpC and SOX2 significantly decreased both mRNA and protein levels. KEGG pathway analysis indicated that multiple ontogenesis-regulating-relevant pathways converge to FAK. Accordingly, ITGB4 deletion decreased phospho-FAK, phospho-GSK3β and SOX2 levels, and the correspondingly contrary consequence was detected after treatment with GSK3β agonist (wortmannin). Airway branching defect of β4ccsp.cre mice lung explants was also partly recovered after wortmannin treatment. Airway epithelial-specific deletion of ITGB4 contributes to lung developmental defect, which could be achieved through the FAK/GSK3β/SOX2 signal pathway.

Prevalence of Selective Immunoglobulin A Deficiency in Egyptian Asthmatic Patients

Abstract Background Asthma is the most common chronic illness in childhood and a major cause of morbidity in adults, affecting 9.6-13% of children, 7.7-10.1% of adults in the US, and 300 million people globally. Aim of the Work to assess prevalence of selective immunoglobulin A (sIgA) deficiency in Egyptian Asthmatic patients. Patients and Methods This case control study conducted on patients 60 with bronchial asthma according to GINA2011 attending allergy and clinical immunology outpatient clinic at Ain Shams University hospital. They were divided into three groups: the first group includes 20 Asthmatic patients with recurrent chest infections. The second group includes 20 Asthmatic patients without recurrent chest infections and the third group includes 20 healthy controls. All participants were subjected to the following: full history, full clinical examination in addition to the following investigations, complete blood count (CBC) with differential, spirometery, chest X-ray, serum IgG, serum Ig A, serum Ig E, serum IgM and CRP. Conclusions Asthma is one of the most common diseases in the world that can be triggered with SIgAD. Asthmatic patient is more prone to the risk of infections. It may be due to impaired innate and adaptive immune system that predisposes individuals to microbial infections or may be related to the presence of one type of primary immune deficiency such as; SIgAD.

Beyond the mean: Distributional differences in earnings and mental health in young adulthood by childhood health histories

Research on the long-term effects of health in early life has predominantly relied on parametric methods to assess differences between groups of children. However, this approach leaves a wealth of distributional information untapped. The objective of this study was to assess distributional differences in earnings and mental health in young adulthood between individuals who suffered a chronic illness in childhood compared to those who did not using the non-parametric relative distributions framework. Using data from the Panel Study of Income Dynamics, we find that young adults who suffered a chronic illness in childhood fare worse in terms of earnings and mental health scores in adulthood, particularly for individuals reporting a childhood mental health/developmental disorder. Covariate decompositions suggest that chronic conditions in childhood may indirectly affect later outcomes through educational attainment: had the two groups had similar levels of educational attainment, the proportion of individuals with a report of a chronic condition in childhood in the lower decile of the relative earnings distribution would have been reduced by about 20 percentage points. Findings may inform policy aimed at mitigating longer run effects of health conditions in childhood and may generate hypotheses to be explored in parametric analyses.

Chronic Disease Management of Children Followed with Type 1 Diabetes Mellitus.

With the diagnosis of chronic illness in children, a stressful period is likely to begin in children and their families. The aim of this study was to investigate the factors affecting chronic disease management by the parents of children with T1DM diagnosed with Type 1 Diabetes Mellitus (T1DM). The sample consisted of 110 children, aged between 4-17 and their mothers. The patients had been diagnosed with T1DM for at least one year, and had attended pediatric endocrinology outpatients or were hospitalized in a single center. First, sociodemographic information about the child with T1DM were obtained. Then, the "Family Management Measure" (FaMM) was applied. The FaMM is constructed to measure family functioning and management in families who have a child with a chronic illness. Paternal years of education (p=0.036), family income (p=0.008), insulin pump use (p=0.011), time elapsed after diagnosis (p=0.048) positively affected both the management of T1DM and the child's daily life but presence of chronic diseases in addition to T1DM (p=0.004) negatively affected diabetes management. Higher maternal education year (p=0.013) and family income level (p=0.001) increased parental mutuality scores. However, as the time after diagnosis increased, parental mutuality scores decreased. It is important to evaluate the child with chronic disease with a biopsychosocial approach. This approach aims to evaluate the problems of the child and his/her family who experience the disease with a holistic approach.

Transition Care in Cystic Fibrosis.

Cystic fibrosis (CF) is a chronic childhood illness with gradually improving survival and significant burden of disease during adult life. Transition of CF care from pediatric to an adult based multidisciplinary team is a complex process and careful coordination with a transition key worker is necessary for successful transition without adverse outcome. Transition is associated with a key change in CF management with shift from family-centred care to self-reliance and independence on part of the patient. Readiness and skills of self-managed care play central part in successful transition. Resource materials for transition are available online for different countries for improved readiness and smooth transition. Situation is worse in resource-limited settings as facilities of fully functional adult multidisciplinary care for CF is not readily available.

Religiosity and Indigenous Cosmology in a Brazilian Hospital Setting: The Challenges Faced by Health Professionals

This article focuses on the description, discussion, and problematization of the ways indigenous spirituality is presented in a Brazil’s hospital, in the context of the treatment of chronic illnesses in children under medical supervision. It describes a short extract from a more wide-ranging study, focusing on the analysis of excerpts of the verbal responses of health professionals, and of two specific cases. Adopting a phenomenological approach, the vicissitudes of the hospitalization of indigenous children are described from the perspectives of the professionals, with an emphasis on the outcomes of the reported cases, which are riddled with impasses and challenges, with important implications for the country’s health policy and for the training of health professionals. Grounded on the cosmological explications for the illness, the indigenous child’s family members tend to resort to pajelança, (indigenous traditional healing rituals), even within the hospital environment, with or without the consent of the medical team. This process does not always end harmoniously or in an integrated fashion, evidencing the rifts in the interaction between indigenous curing practices, underpinned by thousands of years of tradition, and medical practices grounded on formal, rational, and scientific understanding. We conclude by indicating perspectives for professional training and the respective ethical considerations.

Checking IN: Development, Acceptability, and Feasibility of a Pediatric Electronic Distress Screener.

Chronic illness in children and adolescents is associated with significant stress and risk of psychosocial problems. In busy pediatric clinics, limited time and resources are significant barriers to providing mental health assessment for every child. A brief, real-time self-report measure of psychosocial problems is needed. An electronic distress screening tool, Checking IN, for ages 8-21 was developed in 3 phases. Phase I used semi-structured cognitive interviews (N = 47) to test the wording of items assessing emotional, physical, social, practical, and spiritual concerns of pediatric patients. Findings informed the development of the final measure and an electronic platform (Phase II). Phase III used semi-structured interviews (N = 134) to assess child, caregiver and researcher perception of the feasibility, acceptability, and barriers of administering Checking IN in the outpatient setting at 4 sites. Most patients and caregivers rated Checking IN as "easy" or "very easy" to complete, "feasible" or "somewhat feasible," and the time to complete the measure as acceptable. Most providers (n = 68) reported Checking IN elicited clinically useful and novel information. Fifty-four percent changed care for their patient based on the results. Checking IN is a versatile and brief distress screener that is acceptable to youth with chronic illness and feasible to administer. The summary report provides immediate clinically meaningful data. Electronic tools like Checking IN can capture a child's current psychosocial wellbeing in a standardized, consistent, and useful way, while allowing for the automation of triaging referrals and psychosocial documentation during outpatient visits.

Chronic Diseases in Children as a Challenge for Parenting

To be a parent or a caregiver in a modern society is a very difficult task, including multiple demands and expectations. Parenting imposes a special role in the life of any couple, especially for the mother, roles which must be learned through personal education, enriched by transgenerational experience. Chronic disease is recognized as a large stressor that affects the current situation of a child and a child's family. In this difficult situation, the family must go through a process of learning how to cope with it. In the family, where a child has a long-term health problem, there are certain behaviours that hinder the normal functioning of family relationships. According to the experience of many researchers, including my own, there is an indication that a child's illness often leads to the divorce of the parents. The fathers of sick children are often the initiators of such decisions. The purpose of this article was to find if there are differences in parenting between mothers and fathers of chronically ill children. The methodology is comprised of a review of published articles in PubMed over the last two decades related to parenting when there is chronic illness in children. More than 500 articles related to the topic were found. Obtained results were discussed.