Child's Disease Research Articles

Assessment of the Communicable Disease Status of Children in Türkiye: A Community-Based Cross-Sectional Study.

Assessment of children's communicable disease status is effective in preventing child morbidity. This study aims to evaluate the infectious disease status of children aged 0-14 in Türkiye. The research is a cross-sectional study conducted using the microdataset of the "Türkiye Health Survey 2022" obtained from the Turkish Statistical Institute. Seven thousand nineteen individuals aged 0-14 were included in the analysis. Data on communicable diseases of children aged 0-14 years in the 6-month period before the survey date was obtained by asking the household head. In our research, the data of 7019 individuals aged 0-14 was evaluated. It was determined that 2.2% of children had a vaccine-preventable infectious disease in the last 6 months. It was observed that the frequency of upper respiratory tract infection, lower respiratory tract infection, urinary tract infection, and diarrhea in children was higher in the 0-6 age group than in the 7-14 age group. Urinary tract infections were more common in girls, whereas respiratory tract infections, communicable diseases, and diarrhea were more common in boys. It was determined that diarrhea and upper respiratory tract infections occur in approximately one out of every three children in the 0-6 age group.

"None of us asked to be in this community." Understanding nephrotic syndrome through TikTok: patient and caregiver perspectives.

TikTok, a popular social media platform, is increasingly used for health information dissemination; however, the accuracy and quality of medical content remain uncertain, including in the context of nephrotic syndrome (NS). This study aims to identify prominent patient and caregiver experiences with NS on TikTok and demonstrate how they may vary. A convenience sample of TikTok videos containing the hashtag "nephrotic syndrome" posted between July 1, 2020, and February 29, 2024, was analyzed. Videos underwent cyclical and inductive coding, followed by content and discourse analysis to identify common themes and narratives. One hundred twenty-three videos were included in the analysis. 62.6% of videos (N = 77) consisted of caregivers sharing their experiences of their child's disease. Three prominent topics included: (1) navigating healthcare and managing illness, where users shared their disease journeys; (2) emotional and physical wellbeing, where caregivers focused on physical disease signs while patients highlighted the mental health toll of the illness; and (3) education, awareness, and support systems, where users shared feelings of social isolation post-diagnosis. The discourse analysis revealed language portraying patients as "warriors," reflecting the resiliency promoted by TikTok support systems. We uncovered a hidden disease burden associated with NS that affects everyday life, reinforcing the importance of the journey and stress patients and caregivers experience outside of the clinician's office. Our findings also highlight that patient priorities may differ from those reported by caregivers, particularly in pediatrics. TikTok may also be an outlet for feelings of isolation and community-building within NS.

Parental awareness and dental health behavior of children with congenital heart disease, with diabetes mellitus, or undergoing anti-cancer treatment, compared to healthy children.

Children with chronic diseases tend to experience a considerably higher burden of oral disease compared to their healthy peers. Low awareness of the impact of systemic diseases on oral health, lack of motivation, and discomfort may render the maintenance of good oral hygiene challenging. We conducted a study of four groups of parents: of children with congenital heart disease (CHD), with diabetes mellitus type 1 (DM), and undergoing anti-cancer treatment (ACT); and a control group of healthy children (C). We aimed to compare between the groups, parental attitudes and knowledge of their children's oral health, and their reports of their children's dental habits. Parents who arrived with their children for routine check-ups at three main clinics: cardiology, endocrinology, and hematology-oncology were asked to respond to a questionnaire regarding their children's oral and dental health. A total of 287 questionnaires were collected from 76 parents of children with CHD, 100 parents of children with DM, 50 parents of children undergoing ACT, and 61 parents who comprised group C. Compared to the CHD and DM groups, the ACT group demonstrated significantly more awareness of the importance of maintaining oral and dental health following diagnosis of their children's medical condition. Mothers' education was found to correlate with dental health knowledge. Most children in the DM and C groups had previous dental examinations, compared to only half in the CHD and ACT groups. A higher proportion of the children in the C than the other groups brushed teeth twice daily. The groups were similar in their consumption of sugary drinks, and of sweets and snacks. The children's specialist physicians were the main source of information on oral health, especially in the ACT group. Although most of the parents reported awareness to the oral health aspects of their children's disease, only part of them reported that their children visited dentists, and brushed their teeth twice daily. For the parents of children with CHD, DM, and ACT, their children's treating specialists were the primary source of information regarding oral health. This highlights the importance of clear and continuous communication between pediatric specialists and dentists.

Bereaved parents' perceptions of their cancer-ill child's last month with or without palliative care -a nationwide study.

Cancer is still the leading cause of non-accidental death in childhood, although the majority of children diagnosed in high-income countries survive their illness. In accordance with international standards, equal and early access to palliative care should be available to children and adults. Yet communication and prognostic disclosure may influence the timing of involvement in palliative care. Purpose: To investigate whether parents perceived that their child received palliative care and to what extent that contrasted parents' perceptions of their child's care and symptoms in the last month of life. A nationwide population-based parental questionnaire study in Sweden, one to five years after their child's death (n=226). Descriptive statistics were used. A majority of parents (70%) reported that they were aware that their child received palliative care and they were informed about the incurable disease (57%) within 3 months before the child died. The most common diagnosis among children receiving palliative care was a brain tumor (45%) with a disease related death (90%) and the care was often received at home (44%). Based on the reports of parents who felt that their child did not receive palliative care, 45% were informed within days or hours about the child's incurable disease, 45% of these children were diagnosed with leukemia, 60% died at the intensive care unit, and 49% died of treatment-related complications. It was most common for families who lived in urban areas (28%) to report their child received palliative care, in comparison to families living in sparsely populated areas (11%). A significant proportion of parents whose child received palliative care (96%) stated that the healthcare professionals were competent in caring for their child, for those who reported no palliative care it was slightly lower (74%). In both groups many children were affected by multiple symptoms the last month of life. The study findings highlight the role of understanding parental perceptions of pediatric palliative oncology care, the role of initiating palliative care early, the need of access to national equitable PC and professional competence across the lifespan, regardless of diagnosis and place of residence.

A two-institution pilot study on the psychological burden and distress of parents caring for children with shunted hydrocephalus.

Little is known about the emotional health of parents caring for children with shunted hydrocephalus. The aim of this pilot study was to find out whether parents caring for shunt-treated hydrocephalic children experience serious psychological problems and psychosocial distress and whether these problems are related to the sociodemographic background of the caregivers, the clinical characteristics of their children, and parents' illness-related concerns and perceived burden of their children's illness. This pilot study was performed in an outpatient setting at two German hospitals. The following questionnaires were handed out to parents of children with shunted hydrocephalus (< 21 years of age): the Patient Health Questionnaire (PHQ-9) for depression, the Generalized Anxiety Disorder Scale (GAD-7) for anxiety, the Distress Thermometer (DT) for psychosocial distress, the Hydrocephalus Concerns Questionnaire (HCQ) for assessment of parents' illness-related concerns, and the Hydrocephalus Outcome Questionnaire (HOQ) for assessment of perceived children's disease burden. Clinical data of the respective children were collected from electronic charts. Parents' demographic data were evaluated via questionnaires. Parents' psychological variables were correlated with demographic and clinical data and HCQ and HOQ scores. Regression analyses of HCQ and HOQ scores with psychological items were performed. Sixty-three parents were included in this study. Of these, 60% reported clinically relevant levels of either depression (11%), anxiety (10%), and/or psychosocial distress (57%). There were no associations between parental sociodemographic or children's clinical characteristics with parents' psychosocial well-being or psychosocial distress. Depression, anxiety, and DT scores were highly intercorrelated and significantly correlated with HCQ scores (r = 0.508, r = 0.516, r = 0.442; p < 0.01). Thereby, worries about shunt-related complications were the most reported concern in the HCQ. Depression and anxiety correlated with the scores of some HOQ subcategories. In preliminary regression analyses, higher illness-related concerns predicted occurrence of parents' anxiety. The authors' results support the notion that there is a need for psychosocial support for a proportion of parents who care for shunted hydrocephalic children. Perceived child symptom burden and parental illness concerns were identified as relevant correlates of parental psychological well-being. Thus, concerns specific to shunt-related problems could be a first starting point for the development of individual support measures.

Characteristics of Health-Preserving Behavior of Parents Raising Children with Disabilities

The article presents the results of a study devoted to the study of health-preserving behavior of parents raising children with disabilities aged 6-10 years. The study was conducted in April-May 2024 in the Borovsky District of the Kaluga Region. The research method was a questionnaire survey of parents. The questions touched upon the implementation of such important areas of child health-preservation in the family as home nutrition, daily routine, sleep, hygiene, control over the safe use of gadgets for the child's health, the psychological climate in the family, the attitude of parents to their own health, etc. The process of interaction between parents and a medical institution and medical workers as subjects of child health-preservation was also studied. It was found that the majority of parents (85%) fully comply with the doctor's advice and prescriptions. Most parents (68%) know the specifics of the child's disease and treatment. According to 54% of parents, their children willingly follow the doctor's recommended prescriptions. 15% of parents failed to develop the skill of following doctors' recommendations in their children with disabilities. In 30% of parents, the child does not follow the doctor's orders or follows them thanks to the parents. In every third family, the sick child's sleep schedule is not followed. Only a third of parents (31%) have children who attend exercise therapy classes. Parents have a low level of health-preserving competence in the issue of healthy nutrition. The materials of the article can be used in the work of specialists in medical and social institutions, educational and public organizations, and can also be useful for researchers interested in the problem of health preservation of children with disabilities.

Factors affecting the level of parental knowledge about their children's congenital heart diseases and their care.

To assess parental knowledge about their children's congenital heart disease using a newly-designed scale. The cross-sectional study was conducted from June 2020 to May 2021, at Alkhansaa maternity and child hospital, Mosul Iraq; after approval from the ethics review committee of Ninevah Medical College, Ninevah University, Iraq, and comprised parents with children having congenital heart disease. Data, including age, gender, type of congenital heart disease as well as parents' educational and socioeconomic levels, residence, internet use and knowledge of the disease with respect to type, burden, bacterial endocarditis, outcome, etc. was noted. Parental knowledge levels were measured using a self-designed scoring scale, having a total score of 18 and 4 categories; <6 = some knowledge, 7-12 = good knowledge, 13-17 = very good knowledge, and 18 = full knowledge. Data was analysed using SPSS 26. There were 364 children with mean age 83.72±47.4 months and a male-female ratio of 0.98. The mean age at diagnosis was 12.1±8.32 months. The overall mean parental knowledge level was 8.41± 3.88, with 126(34.6%) parents having some knowledge, 178(48.9%) having good, 58(16%) having very good, and 2(0.5%) having full knowledge about their children's health condition (p<0.001) There was a significant association of parental knowledge with educational level, socioeconomic status and the type of doctor caring for the child (p<0.05). The duration of the illness showed a significant correlation with knowledge level (p=0.021). Heart Defects, Congenital, Endocarditis, Bacterial, Social Class.

Seroprevalence of SARS-CoV-2 infection in pediatric patients in a tertiary care hospital setting.

Globally, cases of children's coronavirus disease 2019 (COVID-19) have been reported since the pandemic started. Most children have an asymptomatic or mild infection. Therefore, the incidence rate of COVID-19 in children might have been underestimated. This study aimed to determine (1) the seroprevalence (and seroconversion rates) of COVID-19, including associated risk factors, in pediatric patients visiting hospitals; and (2) the immunological responses to COVID-19. This was a prospective, cross-sectional study. Patients aged 0-18 years who visited the hospital from September 2020 to February 2022 were included. Demographic, clinical, and laboratory data were reviewed. A total of 1,443 pediatric patients were enrolled. Of these, 323 (22.6%) had a history of COVID-19. In the pre-Delta period, the seroprevalence increased from 4.1% to 70.6% in all included patients and from 0.5% to 10% in patients without a known history of COVID-19 compared with the Delta-Omicron period. The seroconversion rate was 6.8% (19 per 100 person-years) in pediatric patients with COVID-19. Risk factors for COVID-19 seropositivity were respiratory symptoms, being in an outpatient department setting, and infection during the Delta-Omicron period. Exposure to household members with confirmed COVID-19 was a risk factor for seropositivity and seroconversion. Infection during the Delta-Omicron period and testing conducted >2 weeks after the onset of symptoms was associated with spike immunoglobulin (Ig) M and spike and nucleocapsid IgG, respectively. High nucleocapsid IgG levels were associated with pneumonia in pediatric patients with COVID-19. Pediatric patients exposed to household members with COVID-19 and respiratory symptoms should be tested for COVID-19. Nucleocapsid IgG can be used as a surrogate marker to identify patients who may have experienced pneumonia from COVID-19 and as a screening tool for the COVID-19 outbreak, regardless of COVID-19 vaccination status.

Telebehavioral Health for Caregivers of Children With Behavioral Health Needs to Address Caregiver Strain: Cohort Study.

Behavioral health conditions among children have worsened over the past decade. Caregivers for children with behavioral health conditions are at risk for two types of caregiver strain: (1) an objective strain, that results directly from the child's condition and (2) subjective strain, that arises from the caregiver's feelings regarding these events. This study aimed to evaluate the impact of a technology-enabled pediatric and family behavioral health service on caregivers' strain among a commercially insured population. We also explore the common symptom clusters of caregiver strain to better understand the caregiver presentation to inform future care planning. We examined changes in caregiver strain using the Caregiver Strain Questionnaire-Short Form 7 over the course of their child's web-based behavioral health care between 2021 and 2023 using a pre-post study design. Common caregiver strain symptom clusters were identified using Ward hierarchical agglomerative clustering. The majority of children were White 60.8% (1002/1647), female 53.6% (882/1647), and aged between 5 and 9 years (33.7%, 555/1647). Families fall broadly into 4 groups based on what drives caregiver strain the most, namely those experiencing (1) disrupted family relationships and time interruption, (2) missed work, (3) worried about their child's future and feeling tired and sad, and (4) financial strain. Caregiver strain, which was associated with the child's disease severity (P<.001), decreased significantly in all therapeutic groups. Web-based family-oriented behavioral health care can improve caregiver strain and reduce family and time disruptions, missed work, and financial strain. Sources of caregiver strain vary and may be overlooked when relying on the conventional scoring of the Caregiver Strain Questionnaire-Short Form 7.

Growth at 2 years corrected age in preterm infants discharged on two different breast milk enhancements: An observational study.

Breast milk (BM) enhancement is often used to meet the nutritional needs of preterm infants after hospital discharge to achieve optimal growth. This study compared growth at 18-28 months corrected age (CA) among very preterm (VP) and very low birth weight (VLBW) infants discharged from the neonatal intensive care units (NICUs) on two BM enhancements. We conducted a retrospective chart review study of infants born between January 1, 2013 and December 31, 2017, with gestational age < 32 weeks or birthweight < 1500 g, discharged from the NICU on BM enhancements; fortification of BM with infant formula additives (BM-F) or unfortified BM supplemented with bottle feeds of infant formula (BM-S). BM enhancements were nonrandomized and determined by the medical team. A linear mixed model regression analysis with propensity score matching was used to estimate the adjusted associations between the nutrition plan at discharge and growth outcomes at 18-28 months CA follow-up. Two hundred and fifty-one VLBW/VP infants were included. Compared with BM-S, infants discharged on BM-F were more likely to continue receiving BM at 8-12 months CA, and had lower head circumference, weight-for-length z scores, and higher incidence of moderate malnutrition (p ≤ 0.01). After adjusting for confounders, discharge on BM-F was associated with a lower incidence of overweight/obesity at 18-28 months CA (odds interval: 0.45; confidence interval: 0.21-0.96; p = 0.04). This retrospective study suggests that VLBW/VP infants discharged on BM-F received BM longer, had lower growth parameter and were less likely to be overweight/obese at 18-28 months CA. Further studies are needed to evaluate the role of postdischarge nutrition on preterm born children's growth, metabolic disease, and neurodevelopmental outcomes.

"In God We Trust": An Exploratory Study of the Associations Between Religiosity and the Caregiving Experiences of Parents of Children with Rare Diseases in Poland.

Most children with a rare disease are cared for by their family members but parenting such a child is extremely demanding due to the complexity and severity of symptoms, with serious physical, emotional, social, and financial consequences for caregivers. Although religion may serve as a positive coping strategy, little is known about its role in helping caregivers manage the stress related to the burden of caregiving in Poland. Therefore, we surveyed 925 Polish family caregivers of children with rare diseases to understand the association between caregivers' religiosity and their caring experiences. The findings suggest that parents' religiosity is associated with a more positive caregiving experience, perceived quality of life, and experienced caregiving burden. While religious caregivers reported experiencing less distressing emotions and stressed the encouraging impact of their child's disease on their life more often, non-religious caregivers experienced role captivity and role overload more frequently. Since religion may serve as a source of strength and a protecting factor against mental health problems and the burden of caregiving, healthcare professionals should be aware of the importance of religious and spiritual care, and caregivers' religiosity should be considered an integral part of a holistic approach.

Nursing Experience Applying Transition Theory to Assist the Family of an Infant With Complex Congenital Gastroschisis

This article describes the application of transition theory to assist a family with an infant with congenital complex gastroschisis. The nursing period, from March 3, 2023 to May 9, 2023, encompassed care from hospitalization to discharge. The author employed transition theory as a guide and used physical assessments, observations, and interviews for data collection as well as behavioral processes records. The primary nursing problem was identified as "preparation for family operation process enhancement/child's congenital disease and complex care needs, and the family's response to the challenges of the disease and care adaptation." The three phases of nursing care were summarized as: (1) the family adjustment to uncertainty, (2) undertaking caregiving roles and responsibilities, and (3) role development and family reconnection. The author established specific goals for each phase and provided corresponding interventions for the family. In the first phase, the author guided the family in expressing their concerns, and offered personalized health education information as well as psychological support to help them understand the progression of their child's disease and alleviate related anxiety and confusion. In the second phase, the author offered sleep guidance and customized home care schedules to support coping skill development and role functioning. In the third phase, the family was encouraged to explore the meaning of life while accompanying their child's growth in order to achieve spiritual growth and deepen the reconnection within the family. Ultimately, the family strengthened their confidence and capabilities in caregiving and embraced optimism and expectations for the future, enabling them to adapt smoothly to life after their child's return home. When families are confronted with their child's diagnosis with a congenital disease, they often find themselves in a state of self-doubt and faced with continuous challenges. Nurses may employ transition theory throughout the nursing process to better understand and address the evolving needs of both children and their families during the transition phase. Furthermore, transition theory may be applied to help nurses better assess, plan, and care for their patients, which can enhance the capabilities of families and facilitate their successful navigation through the challenging transition journey.

“Whatever is bad goes back to the woman”: The gendered blame game of sickle cell disease in Malawi and Uganda

Mothers are commonly blamed for the ill-health of their children, and this is well documented in research. However, few studies have considered gendered patterns of blame for hereditary conditions caused by mutations from both parents through dual, shared genetic inheritance. This paper explores the ‘gendering’ of blame in the context of an inherited blood disorder known as sickle cell disease. The findings are drawn from 18 focus group discussions with 117 caregivers of children with sickle cell disease in Malawi and Uganda. Although one mutation from each parent is required for the disease to develop, low awareness about their status as healthy carriers of a sickle cell trait complicated the caregivers' recognition and acceptance of their genetic link to the child's condition. This study demonstrates how fathers and other members of the paternal side of the child's family would deflect blame from their own lineage by directing sole ‘genetic responsibility’ for the child's disease towards mothers. We discuss the implications of gendered blame on household dynamics and healthcare-seeking for children with sickle cell disease in this setting.

Impact of Parental Cancer on Children: Differences by Child's Age and Parent's Disease Stage.

(1) Receiving an oncological diagnosis involves countless physical and mental challenges for those who become ill. In addition to this, developmental activities are put on hold when a parent becomes ill, significantly impairing children's normal growth and development. The purpose of this review is to highlight the psychological impact of cancer on children, with particular attention to differences based on the age of the child and the stage of the parent's disease. (2) Articles published on PubMed up until October 2023 were searched. Qualitative and quantitative studies were included in this review after an evaluation of the full text. The study selection process was undertaken by two researchers, and articles for which there was unanimous agreement between researchers were included in the review. (3) Children's psycho-emotional responses differ based on their age and the disease stage. In general, good communication and a supportive family environment that understands everyone's needs seem to constitute important protective factors that favor the adaptation of the entire family to the disease. (4) The family, as an evolutionary system, finds itself facing phases typical of development. Knowing the variables that intervene in the process of adaptation to the disease will allow us to design specific and differentiated clinical interventions based on the needs of not only the patient but also the entire family.

Pediatric Pulmonology 2023 year in review: Rare and diffuse lung disease.

The field of pediatric rare and diffuse lung disease continues its maturation as research advances the understanding of diagnosis and treatment of children's interstitial lung disease, noncystic fibrosis bronchiectasis, and primary ciliary dyskinesia. The rarity and breadth of these conditions make them challenging to study, yet we continue to make progress in our understanding of pathophysiology, genotype/phenotype relationships, and treatment. Papers published on these topics in Pediatric Pulmonology and other journals in 2023 describe the power of multicenter cooperation and patient registries, enhance our understanding of pathophysiology and genotype/phenotype relationships, and report progress in treatments. In this review, we hope to increase awareness and knowledge of these conditions and to inspire future research.

Caregiver Burden, Parenting Stress and Coping Strategies: The Experience of Parents of Children and Adolescents with Osteogenesis Imperfecta.

Only a few studies, mainly qualitative thematic analyses of interviews, have dealt with the psychological experience of parents of children and adolescents with osteogenesis imperfecta (OI), a rare genetic syndrome involving skeletal fragility and increased exposure to bone fractures. The aim of the present study was to evaluate both negative (i.e., parental burden and parenting stress) and positive (i.e., coping strategies and perceived social support) experiences of parents related to their children's disease and behaviour. The participants were 34 parents of children and adolescents with OI who completed a specifically developed online survey assessing their psychological experience with caregiving, their perception of the severity level of their children's condition and any possible behavioural problems experienced by their children. Data analyses showed that 65% of the parents showed a clinical level of caregiver burden and nearly 30% a clinical level of parenting stress. Caregiver burden was related to the perceived severity level of the condition and the externalising problems shown by their children. Concerning the positive aspects of the parents' experience, a high level of perceived social support was connected to a lower level of parenting stress; the same did not happen for caregiver burden. Coping strategies were connected to stress and burden; in particular, a higher level of stress corresponded to a higher level of avoidance, and a higher level of burden corresponded to a higher level of positive attitude.

Parental stress in the relationship with children affected by chronic hematologic disease.

Sickle cell disease (SCD) and autoimmune thrombocytopenic purpura (AITP) are pediatric diseases which frequently are associated with cognitive, social and emotional complications and can lead caregivers to important consequences. The aim of this study was to examine the potential psychologic parental distress and the plausible interference with suffering of their children. We recruited 39 parents of 44 pediatric patients and divided them into two groups: patients affected by SCD and patients affected by AITP. Parenting Stress Index Short-form (PSI-SF) was proposed to the parents. We investigated the statistical correlations between the PSI-SF variables of the test, the patients scores at the cognitive test, the patients age, and the scores obtained at the mood test. The analysis of the parents scores obtained by the test reported that the stress levels of the parents of children affected by SCD are higher than those the other group. The analysis of the data showed that 72% of the patients score was average in the cognitive test, whereas 28% of them obtained a score below average; in the mood assessment tests: 35% of the patients reported elevated scores in the depression subscale; 21% showed an elevated score in the anxiety subscale. The data obtained provide us useful indications about pattern of behavior between the parents and the children affected by chronic hematological diseases. The differences in the perception of the parental distress were associated with children's disease, social problems increased parental distress, which was correlated with depression symptoms of the children.

Attitude and Behavior of Parents of Children With Sickle Cell Disease Toward the Disease: An Observational Study in Saudi Arabia.

Sickle cell disease (SCD) is a significant hematological disorder affecting populations worldwide, with a notable prevalence in certain regions of Saudi Arabia. Despite extensive screening programs, there is a critical need for improved public health education to enhance understanding and management of SCD. This study examines the relationship between the attitudes and behaviors of parents toward their children's disease and its management. We conducted a cross-sectional observational study at the King Fahd Medical Research Center in Jeddah. This research encompassed children aged 5-16 years with SCD and their parents. Comprehensive questionnaires assessed sociodemographic data, attitudes toward SCD, and behavioral responses to the illness and treatment. The study included 66 parents, predominantly in the age range of 30-39 years and earning below 5000 Saudi Riyals, who exhibited varying attitudes towards SCD, with a majority questioning the availability of a cure and expressing caution towards new treatments. Despite a cautious approach to invasive treatments, parents relied on information from healthcare providers. Attitudes towards treatment showed significant differences based on gender and education level, with females and less-educated parents exhibiting more hesitancy towards new treatment and blood transfusions. The study indicates that while parents show a positive and proactive attitude toward SCD, there is hesitancy towards new and invasive treatments, reflecting the need for continued educational support. The results underscore the importance of tailored healthcare communication strategies to address the diverse needs of families affected by SCD.

A Child with Crohn's Disease: Problems and Stress Level of Parents-Caregivers-A Cross-Sectional Study.

Crohn's disease (CD) is a chronic inflammatory bowel disease. The perception of the disease, its troublesome symptoms and the highly involved treatment mean that living with CD requires not only the affected child having to learn to cope with it, but also their parents. The aim of the study was to examine the problems and levels of stress in parents-caregivers of children with CD. The study was cross-sectional and conducted using the diagnostic survey method. An original questionnaire was used to assess the socio-demographic situation and problems of caring for a child with CD, and the standardised PSS-10 questionnaire was added. The study group consisted of 60 parents who accompanied their children during hospitalization. The surveyed caregivers of children with CD found it difficult to maintain a specialised diet and deal with the need for hospitalization and the chronic use of medications. Access to the necessary knowledge about the disease posed the least difficulty in everyday life for a child with CD. The vast majority of parents (50, 83.34%) felt a high level of stress related to caring for a child with CD and, simultaneously, a lack of acceptance of the child's disease (39, 65%). The age of the respondents did not have a statistically significant effect on the occurrence of problems related to everyday functioning. The acceptance of the child's disease by the parents and informal caregivers of children with CD reduced their stress level. Parents could count on support from their relatives but, unfortunately, institutional support was not properly provided.

Association between parental education level & outcomes for children with long-term ventilator dependence: Communication behaviors as moderating variables

PurposeThe purpose of this study was to examine the correlation between parental education level and outcomes for children with long-term ventilator dependence (LTVD) and their families and whether parent communication behaviors with hospital nurses moderated the relationship. Advances in medical technology and policy changes allow children with LTVD to be cared for at home. The child's diagnosis and disease severity affect their health outcomes, as do their family's social determinants of health (SDoH) such as parent education. Design and methodsThis secondary data analysis used chi-square tests to evaluate the correlation between parental education level and outcomes. Generalized linear mixed effect models were used to examine the moderation effect of parent communication behaviors. ResultsLower parental education level was associated with more child respiratory infections and more parental uncertainty within one month following hospital discharge. Lower parent education level was also associated with fewer unplanned contacts with providers within one week post-discharge. Additionally, parent use of Verifying Understanding communication behaviors moderated the relationship between parental education level and number of respiratory infections and amount of parental uncertainty. Finally, parent use of Negotiating Roles moderated the association between education level and number of unplanned visits. ConclusionsContradicting previous research, lower parental education level does not consistently correspond to adverse outcomes and may be explained by parents' determination to ensure optimal outcomes for their children with LTVD. Practice implicationsOverall, healthcare providers should not be concerned that children with LTVD will have different outcomes based on their parents' education level.