Children and adolescents hospitalized with chronic conditions: sleep patterns, resilience and quality of life.

OBJECTIVE: To evaluate the sleep pattern of children and adolescents with chronic conditions during hospitalization and correlate it with resilience, quality of life, clinical and sociodemographic data. METHOD: Quantitative, descriptive and cross-sectional study. Data collection took place between May 2022 and January 2023, with children and adolescents with chronic conditions from two hospitals in Rio de Janeiro. The instruments used were the Actigraph, Sandra Prince-Embury's Resilience Scale for Children and Adolescents and the Pediatric Quality of Life Inventory. Data analysis involved descriptive statistics and correlation tests. RESULTS: 40 hospitalized children and adolescents between the ages of nine and 18 took part. The results showed compromised sleep, especially in terms of duration and time awake after sleep onset. Quality of life scores were low and resilience levels were classified as medium to high. Correlations were found between resilience and sleep. In addition, sleep was influenced by diagnosis and treatment. CONCLUSION: Children and adolescents hospitalized with chronic conditions experience significant sleep disturbances and have a low quality of life, but have satisfactory levels of resilience.

Qualitative Study of Food Insecurity in Hospitalized Pediatric Patients during the COVID-19 Pandemic.

OBJECTIVES: Food insecurity (FI) is defined as limited or uncertain access to sufficient food for a healthy and active lifestyle. Our objective was to explore how the coronavirus disease 2019 (COVID-19) pandemic affected the FI status of pediatric patients and their families through interviewing caregivers who screen positive for FI. METHODS: Caregivers of all hospitalized patients at a tertiary children's hospital who screen positive for FI with a two-question screening tool were approached about enrolling in the study. Those who consented completed a presurvey and participated in a semistructured individual interview. Interviews were audio recorded, transcribed, and analyzed according to the guidelines of thematic analysis using NVivo 12. RESULTS: Interviews were conducted with 15 caregivers between July 2021 and January 2022. Caregivers were 100% female and 80% Black, 13% White, and 7% Hispanic/Latinx, with a mean age of 33 years. Seventy-three percent did not experience FI until the COVID-19 pandemic. Themes include lost wages, mothers forced out of the workforce due to childcare limitations, inflation and shortages of goods, increased stress/anxiety for caregivers and children, the centrality of extended family support, and the necessity/inadequacy of federal food programs. CONCLUSIONS: The COVID-19 pandemic impacted unemployment and poverty and consequently exacerbated FI. Our findings point to the need to focus on proximal societal solutions, such as federal policies aimed at food assistance and childcare. Understanding the challenges related to FI that caregivers and patients experience can improve screening, support, and treatment of patients presenting for care and inform the design of necessary interventions for individuals and communities beyond COVID-19.

Effective reduction of anxiety in hospitalised children through bibliotherapy.

AIM: The process of being admitted to a hospital is widely recognised as a distressing encounter for children, frequently resulting in notable levels of anxiety. The main aim was to assess the effectiveness of bibliotherapy in reducing anxiety and to associate anxiety levels with demographic and clinical variables. METHODS: This study was conducted at a paediatric ward in a tertiary care hospital located in Tamil Nadu, India, for 3 months from 1 August 2023-30 October 2023. In this study, a one-group pre-test and post-test design was employed. A sample of 60 children, aged between 5 and 12 years, was recruited using a convenience sampling method. Spence Children Anxiety Scale was used for assessing anxiety levels. RESULTS: The mean age of the participants was 8.46 ± 1.91 years, and the majority, comprising 57%, were male. Following bibliotherapy, 72% of children showed mild anxiety, 28% showed moderate anxiety and no individual had considerable anxiety. Anxiety scores dropped 27%. Significant associations were found between anxiety reduction and variables such as age, educational status, and type of family. CONCLUSION: Bibliotherapy was notably effective in substantially reducing anxiety levels among children aged 5-12 years who were admitted to hospitals.

[Healing Through Art and Play for Hospitalized Children With Medical Trauma].

Children suffering from critical illness often face significant life changes during hospitalization that can impact their external and internal worlds dramatically. Moreover, invasive treatments and medical procedures may cause physical pain and severe psychological distress. Furthermore, children with long-term hospitalization are often preoccupied with feelings of isolation, anxiety, helplessness, and hopelessness. Because children often have difficulty expressing their experiences and may resort to screaming and crying, it is necessary to help them express and transform their disturbing emotions. The literature supports the efficacy of art psychotherapy (AT) in helping children cope with suffering illness and distressing medical treatment procedures. The process of creation and play in AT helps pediatric patients express emotions non-verbally and experience catharsis in gentle and safe ways. AT can promote a sense of security in these patients by building up courage, mental stability, and the readiness necessary to face upcoming medical treatments and procedures. How AT may be used to care for pediatric patients' bodies and minds during hospitalization is presented in this article using a review of the literature and clinical case presentation, with a particular focus on how AT can effectively reduce anxiety and medical trauma responses (i.e., pediatric medical traumatic stress). In addition, the participation of the family and the medical team in the AT process is important in better understanding and appreciating the physical and mental states of pediatric patients and in realizing and transforming the emotions these patients express through this process. Family and medical team members can form a support system and offer appropriate comfort and care to children during their medical treatment, creating a trauma-informed treatment environment and reducing the risk of patient medical trauma.

Children's feelings in isolation rooms during COVID-19 hospitalization.

The treatment given to children who have been confirmed positive for COVID-19 and are showing symptoms involves isolation, which consequently is an unpleasant experience for pediatric patients. In isolation rooms, children reported a "rollercoaster" of feelings due to being separated from their families and familiar surroundings. This study examines children's emotions while being hospitalized in isolation rooms due to COVID-19. The study follows a descriptive qualitative design. Online interviews were carried out and involved 10 children who had been confirmed positive for COVID-19 and were hospitalized in two big cities in Sumatra. Four themes emerged from the data: i) children's emotional conditions after finding out they had positive COVID-19 test results; ii) boredom and inconvenience during isolation; iii) support from the children's peer; and iv) happy responses to receiving negative swab results and being allowed to go home. These themes describe the children's adaptation process to isolation based on the feelings they expressed during the interviews. This study suggests that, in order to improve their facilities, hospitals should support children's activities during isolation and nurses should improve their therapeutic communication with pediatric patients.

The effects of goldfish on anxiety, fear, psychological and emotional well-being of hospitalized children: A randomized controlled study.

AIM: This study aimed to determine the effect of goldfish intervention on anxiety, fear, psychological and emotional well-being of hospitalized children. MATERIALS AND METHODS: Between November 2020 and August 2021, an open-label, single-center randomized controlled experimental study was conducted in Türkiye's Eastern Anatolia region. The study included 112 children aged 8 to 10 years old (56 in the study group and 56 in the control group). The study and control groups were randomly assigned to strata using a table of random numbers. The children in the study group observed after goldfish intervention for three days. As data collection tools, the State-Trait Anxiety Inventory for Children, Child Fear Scale, and the Stirling Children's Well-being Scale were used. RESULTS: The mean state anxiety scores of the children in the study group who looked after goldfish intervention decreased significantly compared to the control group. When the two groups were compared, the difference between the post-test measurements were significant (p < 0.05). The mean score of the fear scale in the post-test measurements of the study group children was significantly lower than the control group (p < 0.05). Finally, the emotional, and psychological well-being post-test scale mean scores of the study group children were higher than the control group (p < 0.01). CONCLUSION: Goldfish intervention was found to be effective in decreasing the state anxiety and fear levels and increasing the psychological and emotional well-being levels of the children in the study group.

Hospitalized children's perceptions of legacy: 'A symbol of yourself that you leave behind'.

BACKGROUND: Legacy building is a developmentally grounded, trauma-informed and family-centred psychosocial intervention designed to bolster patient and family resilience through collaborative activities and meaning making. However, little is known about the effects of these interventions, partially because of a lack of clarity regarding how children of different developmental levels understand the concept of legacy. Therefore, this study explored the ways in which hospitalized children defined the concept of legacy. METHODS: Semi-structured interviews were conducted with 45 hospitalized children (ages 6 to 18 years) on the acute and critical care units of an academic children's medical centre. Interviews were audio-recorded and transcribed verbatim; transcripts were independently coded by at least two members of the research team using an inductive, line-by-line approach; and codes were categorized and assembled into four overarching themes, resulting in a developmental typology of the concept of legacy. RESULTS: Participants described legacy as (1) concepts, actions or feelings motivated by the future; (2) represented through both tangible and intangible means; (3) informed by personal, educational, experiential and ideological sources; and (4) experienced as good, bad or neutral. CONCLUSIONS: The findings of this study demonstrate that hospitalized children are aware of and can articulate an emerging concept of legacy - one that mirrors the progression of cognitive complexity shaped by their unique personal life and healthcare experiences. The developmental typology presented in this study can be a useful starting point for clinicians as they present and facilitate legacy building interventions throughout a child's hospital stay.

Parental psychosocial needs in Brazilian paediatric intensive care units.

BACKGROUND: Having children admitted in the intensive care unit is a demanding experience for parents. They encounter several difficulties during this process, and it is important to properly identify their psychosocial needs for the health team to address appropriately. OBJECTIVE: The aim of the study is to identify the psychosocial needs encountered by parents of children in pediatric intensive care units in Brazil. METHODS: A descriptive study with a qualitative approach was used to increase understanding of psychosocial experiences of parents. Individual semi-structured interviews were conducted with 11 parents of hospitalized children in pediatric intensive care units in Brazil. Thematic analysis was used to analyze the data. The university ethics review committee approved the research protocol. All parents were informed on study details and provided written consent prior to the interview. RESULTS: Four themes were constructed: 1) Support from family and peers; 2) Support from the healthcare team; 3) Parental role; and 4) Emotional recovery. Parents expressed diverse psychosocial needs based on family and peer social support, child's clinical condition, as well as the structure, norms, and routines of health care teams during hospitalization. CONCLUSIONS: The findings highlight the importance of nursing assessment of psychosocial experiences encountered by parents of children in pediatric intensive care units, which will guide planning of individualized interventions and to increase family-centered care in pediatric intensive care units.

Effects of clown visits on stress and mood in children and adolescents in psychiatric care-Protocol for a pilot study.

Scientific evidence has shown that healthcare clowning can decrease the level of stress and anxiety in pediatric patients. However, little attention has been devoted to the potentially beneficial impact of clown visits in the child and adolescent psychiatry setting. Therefore, this pilot study aims at investigating short-term effects of clown visits by RED NOSES Clowndoctors Austria on stress and mood levels of children and adolescents in psychiatric care. The sample will consist of approximately 50 children and adolescents in inpatient psychiatric wards who receive clown visits on a weekly basis over four consecutive weeks. The examined intervention, i.e., the clown visits, is an integral part within the selected psychiatric institutions. Using a non-controlled pre-/post-test design, the level of salivary cortisol and self-reported stress and mood will be measured as primary outcomes before and immediately after each clown visit. Additionally, self-reported effects on care staff at the health care facilities will be assessed based on a questionnaire after each clown visit within the same time period of four weeks. Secondary outcome measures (i.e., health-related quality of life, emotional and conduct problems, perceived chronic stress) will be assessed at baseline and at close-out assessment after the four intervention weeks. Further control variables and potential moderators are included at baseline. Due to the nested data structure, multilevel modeling will be used to analyze the data. To our knowledge, this is the first study to examine the stress-reducing and mood-improving effects of clown visits on inpatients in child and adolescent psychiatry. Results will be relevant for the design of future large-scale RCTs and might provide valuable implications for the use of healthcare clowning to reduce stress and improve mood in children and adolescents in psychiatric care. The study is registered at ClinicalTrials.gov (Identifier: NCT04844398).

Sleep disturbance and psychological distress among hospitalized children in India: Parental perceptions on pediatric inpatient experiences.

PURPOSE: Investigate parental perceptions of children's sleep disturbance and psychological distress associated with an inpatient stay in a low-resource hospital setting. DESIGN AND METHODS: Demographic and validated survey instruments were adapted for administration to parents of children in the medical wards of a tertiary hospital in India. Parents proficient in English, Hindi, Tamil, or Telugu with a child age 4-12 years admitted for at least 48 h were eligible to participate. All respondents completed the Factors Affecting Sleep Disturbance Scale, Sleep Duration Questionnaire, Sleep Disturbance Scale, and Kessler Psychological Distress Scale. Data analysis entailed descriptive statistics, correlations, and multivariate regressions to analyze relationships across responses on demographics, sleep disturbance, and psychological distress. RESULTS: Among 105 parents with hospitalized children, most had children 4-6 years old (54%), including 65% boys and 35% girls. Parents reported that their children slept overnight in the hospital for a mean of 8.3 ± 1.6 h. Children 4-6 year old (relative risk ratio [RRR] = 0.63, p = .004), dyspnea (RRR = 8.73, p = .04), previous hospitalization (RRR = 9.17, p = .03), nighttime procedures (RRR = 2.97, p = .03, and missing home (RRR = 6.78, p < .001) were the factors affecting sleep. Factors affecting psychological distress was nighttime medication administration (RRR = 4.92, p = .01). Sleep disturbances correlated with psychological distress (r = 0.56; p < .01). CONCLUSION: Sleep disturbance and associated psychological distress in hospitalized children were widely reported by parents queried in this low-resource hospital setting. PRACTICAL IMPLICATIONS: Nurses can lead efforts in ameliorating sleep in hospitalized children, including partnering with stakeholders on measures to reduce sleep disruption. Child-centered interventions may improve sleep hygiene and decrease psychological distress among children.

The effectiveness of a medical clowning program on improving emotional status among hospitalized children undergoing cancer treatment: A quasi-experimental study.

PURPOSE: To examine the effectiveness of one-time medical clowning on improving short-term positive emotions among hospitalized children undergoing cancer treatment, and to analyze whether age moderates this effect. DESIGN: In this quasi-experimental research study, we recruited a pooled sample of 96 children who were undergoing cancer treatment in pediatric oncology/hematology wards at three university-affiliated medical centers in Taiwan from June 2018 through April 2020. METHODS: Children's demographic characteristics, symptom distress, quality of life, and pretest emotional status were collected at T1. At T2, we collected only posttest emotional status. We adapted generalized estimating equation models to evaluate the effectiveness of medical clowning on enhancing positive emotions. FINDINGS: Changes in the probabilities of positive emotion were significantly different across groups (51.84% for the experimental group, 15.76% for the control group; Δ = 36.08, p = 0.001), and the change was more than two times larger for the experimental group (effect ratio = 3.28, p < 0.05) than for the control group. When evaluating the moderating effect of age on the intervention, none of the coefficients reached the significant (p < 0.05) levels, suggesting that age may not moderate the intervention effect. CONCLUSION: This study demonstrates the core value of medical clowning in child-friendly health care. Our findings clearly support the benefit of the one-time medical clowning program on enhancing short-term emotional well-being across age groups of children. Medical clowning programs should be strongly encouraged and supported in pediatric oncology wards. CLINICAL RELEVANCE: Medical clowning programs should be widely and continuously implemented in pediatric oncology wards as a routine clinical practice for enhancing emotional well-being among children receiving cancer treatment. Nurses need to be aware of medical clowning's equal effectiveness across age groups, not only or better for younger children.

When a child is hospitalized in a Covid-19 ward: An emotional roller coaster for parents.

PURPOSE: To examine the emotions demonstrated by parents of children hospitalized in a pediatric Covid-19 ward. BACKGROUND: Although Covid-19 is mostly a mild disease in children, a small proportion develop severe disease requiring prolonged intensive care support. METHODS: On October 1st, 2020, a unique ward for children with Covid-19 was established in a large hospital in Israel. Interviews were conducted with parents of children who had been hospitalized in a pediatric Covid-19 ward. FINDINGS: A total of 22 parents of children aged 3 weeks to18 years were interviewed. Three themes emerged: Theme 1: Recognizing their child needed hospitalization in the Covid-19 ward, caused parents anxiety and fear of the unknown. Theme 2: Their child's hospitalization in the Covid-19 ward caused fear and worry at their child's condition, parental stress, shame, boredom, and acceptance. Theme 3: Parents initially felt emotional loneliness towards the healthcare staff in the Covid-19 ward, as well as loss of control, later replaced by feelings of confidence. CONCLUSION: Parents have diverse emotions in response to needing to accompany their children who are hospitalized and isolated in a closed ward due to Covid-19. PRACTICAL IMPLICATIONS: Health care professionals are immensely important in providing support for parents and for their children suffering from Covid-19. A national plan should be established to address inpatient childcare during an epidemic. Nurses can encourage parents and family to be involved in the child's care and communicate effectively to reduce both the parents' and the child's uncertainty, shame, fear and stress.

Visão de familiares sobre o cuidado compartilhado da criança com condição crônica hospitalizada / Visión familiar sobre el cuidado compartido de niños con condición crónica hospitalizada / Family view on the shared care of hospitalized children with chronic condition

Objetivo: compreender a visão dos familiares de criança com condição crônica hospitalizada sobre o cuidado compartilhado com a equipe de enfermagem. Método: estudo transversal, realizado com 231 universitários da área da saúde entre os meses de setembro e outubro de 2020. Aplicou-se o Maslach Burnout Inventory/ Student Survey para avaliar a Síndrome de Burnout e associou-se um questionário para levantamento das variáveis sociodemográficas e acadêmicas. A associação entre variáveis categóricas foi avaliada por meio dos testes Qui-quadrado e Exato de Fisher. Considerou-se nível de significância de 5%. Resultados: identificou-se quatro categorias: Buscando uma definição para cuidado compartilhado; Ajudando e aprendendo durante a hospitalização; Exemplificando as formas de realizar cuidado compartilhado no ambiente hospitalar; Sensações vivenciadas pelos cuidados compartilhados. Considerações Finais: na visão dos cuidadores de crianças em condição crônica, o compartilhamento do cuidado nas hospitalizações é percebido como ajuda dos acompanhantes aos profissionais, e não como parte do cuidado. Foram identificados momentos de troca e aprendizado, porém o cuidado pareceu ser mais compartimentado do que compartilhado.

Objetivo: comprender la visión de los familiares de niños con enfermedades crónicas hospitalizadas sobre la atención compartida con el equipo de enfermería. Método: estudio cualitativo, exploratorio y descriptivo, realizado con diez familiares de niños con enfermedades crónicas hospitalizados en las salas intensivas clínicas, quirúrgicas y pediátricas de un Hospital Universitario de Río de Janeiro, Brasil. La recolección de datos se produjo mediante la aplicación de entrevistas semiestructuradas. Los datos fueron analizados por análisis de contenido. Resultados: se identificaron cuatro categorías: Búsqueda de una definición de atención compartida; Ayudar y aprender durante la hospitalización; Ejemplificar las formas de realizar la atención compartida en el ámbito hospitalario; Sensaciones experimentadas por el cuidado compartido. Consideraciones finales: en opinión de los cuidadores de niños en condiciones crónicas, el reparto de cuidados en las hospitalizaciones se percibe como la ayuda de los acompañantes a los profesionales, y no como parte de los cuidados. Se identificaron momentos de intercambio y aprendizaje, pero el cuidado parecía estar más compartimentado que compartido.

Objective: to understand the view of family members of children with chronic hospitalized conditions about shared care with the nursing team. Method: qualitative, exploratory and descriptive study, conducted with ten relatives of children with chronic conditions hospitalized in the clinical, surgical and pediatric intensive wards of a University Hospital in Rio de Janeiro, Brazil. Data collection occurred through the application of semi-structured interviews. The data were analyzed by content analysis. Results: four categories were identified: Seeking a definition for shared care; Helping and learning during hospitalization; Exemplifying the ways to perform shared care in the hospital environment; Sensations experienced by shared care. Final considerations: in the view of caregivers of children in chronic conditions, the sharing of care in hospitalizations is perceived as the help of companions to professionals, and not as part of care. Moments of exchange and learning were identified, but care seemed to be more compartmentalized than shared.

Comparative Effectiveness of Parent-Based Interventions to Support Injured Children.

OBJECTIVES: A comparative effectiveness trial tested 2 parent-based interventions in improving the psychosocial recovery of hospitalized injured children: (1) Link for Injured Kids (Link), a program of psychological first aid in which parents are taught motivational interviewing and stress-screening skills, and (2) Trauma Education, based on an informational booklet about trauma and its impacts and resources. METHODS: A randomized controlled trial was conducted in 4 children's hospitals in the Midwestern United States. Children aged 10 to 17 years admitted for an unintentional injury and a parent were recruited and randomly assigned to Link or Trauma Education. Parents and children completed questionnaires at baseline, 6 weeks, 3 months, and 6 months posthospitalization. Using an intent-to-treat analysis, changes in child-reported posttraumatic stress symptoms, depression, quality of life, and child behaviors were compared between intervention groups. RESULTS: Of 795 injured children, 314 children and their parents were enrolled into the study (40%). Link and Trauma Education was associated with improved symptoms of posttraumatic stress, depression, and pediatric quality of life at similar rates over time. However, unlike those in Trauma Education, children in the Link group had notable improvement of child emotional behaviors and mild improvement of conduct and peer behaviors. Compared with Trauma Education, Link was also associated with improved peer behaviors in rural children. CONCLUSION: Although children in both programs had reduced posttrauma symptoms over time, Link children, whose parents were trained in communication and referral skills, exhibited a greater reduction in problem behaviors.

Impacts of Neonatal Hospitalization on Families during the 2019 Coronavirus Pandemic.

OBJECTIVE: Limited data are available regarding family and financial well-being among parents whose infants were hospitalized during the 2019 coronavirus (COVID-19) pandemic. The study objective was to evaluate the family and financial well-being of parents whose infants were hospitalized in the neonatal intensive care unit (NICU) during COVID-19. STUDY DESIGN: Parents were recruited for this online, cross-sectional survey via support groups on social media. Data collection was completed between May 18, 2020 and July 31, 2020. The final sample consisted of 178 parents, who had an infant hospitalized in an NICU between February 1, 2020 and July 31, 2020. The primary outcomes were impact on family life and financial stability, as measured by the Impact on Family scale, an instrument that evaluates changes to family life as a result of infant or childhood illness. RESULTS: Of the 178 parent respondents, 173 (97%) were mothers, 107 (59.4%) were non-Hispanic White, and 127 (69.5%) of the infants were born prematurely. Parents reported significant family impact and greater financial difficulty. Extremely premature infants, lower household income, parent mental health, and lower parental confidence were predictive of greater impacts on family life. CONCLUSION: Parents reported significant family and financial impacts during their infant's hospitalization amid COVID-19. Further studies are needed to guide clinical practice and inform family-supportive resources that can mitigate consequences to family well-being. KEY POINTS: · Impact of infant hospitalization in the context of COVID-19 is largely unknown.. · In a cohort of NICU parents during COVID-19, they reported changes to family life and finances.. · Greater impacts were reported by parents with lower income, confidence, and very premature infants..

Intravenous administration of anakinra in children with macrophage activation syndrome.

BACKGROUND: Subcutaneous anakinra is an interleukin-1 inhibitor used to treat juvenile idiopathic arthritis. Recent reports suggest anakinra can be a valuable addition to the treatment of COVID-19 associated cytokine storm syndrome and the related multisystem inflammatory syndrome (MIS-C) in children. Herein, we describe our experience with intravenously administered anakinra. FINDINGS: 19 Patients (9 male) received intravenous (IV) anakinra for treatment of macrophage activation syndrome (MAS) secondary to systemic lupus erythematosus (SLE), systemic JIA (SJIA) or secondary hemophagocytic lymphohistiocytosis (sHLH). In most cases the general trend of the fibrinogen, ferritin, AST, and platelet count (Ravelli criteria) improved after initiation of IV anakinra. There were no reports of anaphylaxis or reactions associated with administration of IV anakinra. CONCLUSION: Intravenous administration of anakinra is an important therapeutic option for critically ill patients with MAS/HLH. It is also beneficial for those with thrombocytopenia, subcutaneous edema, neurological dysfunction, or very young, hospitalized patients who need multiple painful subcutaneous injections.