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BACKGROUND: Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period. METHODS: Seventy siblings were recruited from a large-survey based study (Charting the Territory) that examined the bio-psychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the association between siblings' emotions and behaviour trajectories and selected demographic variables. Siblings' emotions and behaviour were measured with Child Behaviour Checklist (CBCL). RESULTS: Siblings' mean age was 11.2 years at baseline and Internalizing, Externalizing, and Total Behaviour Problems mean scores were within normal ranges across time. However, 7-25% of siblings had scores within the clinical range. Brothers had higher levels of Internalizing Problems than sisters, whereas sisters had higher levels of Externalizing Problems than brothers. When treatment was first sought for the ill child less than a year prior to study participation, siblings had higher levels of Internalizing and Externalizing Problems compared with siblings who participated more than one year after treatment was sought. CONCLUSION: Healthy siblings experience emotional and behavioural problems early in the child's disease trajectory. Although these problems improve with time, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through the uncertainties and challenges.
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Hermanos , Humanos , Masculino , Femenino , Hermanos/psicología , Niño , Adolescente , Emociones , Encuestas y Cuestionarios , PreescolarRESUMEN
BACKGROUND: Sleep problems following childhood cancer treatment may persist into adulthood, exacerbating cancer-related late effects and putting survivors at risk for poor physical and psychosocial functioning. This study examines sleep in long-term survivors and their siblings to identify risk factors and disease correlates. METHODS: Childhood cancer survivors (≥5 years from diagnosis; n = 12â340; 51.5% female; mean [SD] age = 39.4 [9.6] years) and siblings (n = 2395; 57.1% female; age = 44.6 [10.5] years) participating in the Childhood Cancer Survivor Study completed the Pittsburgh Sleep Quality Index (PSQI). Multivariable Poisson-error generalized estimating equation compared prevalence of binary sleep outcomes between survivors and siblings and evaluated cancer history and chronic health conditions (CHC) for associations with sleep outcomes, adjusting for age (at diagnosis and current), sex, race/ethnicity, and body mass index. RESULTS: Survivors were more likely to report clinically elevated composite PSQI scores (>5; 45.1% vs 40.0%, adjusted prevalence ratio [PR] = 1.20, 95% CI = 1.13 to 1.27), symptoms of insomnia (38.8% vs 32.0%, PR = 1.26, 95% CI = 1.18 to 1.35), snoring (18.0% vs 17.4%, PR = 1.11, 95% CI = 1.01 to 1.23), and sleep medication use (13.2% vs 11.5%, PR = 1.28, 95% CI = 1.12 to 1.45) compared with siblings. Within cancer survivors, PSQI scores were similar across diagnoses. Anthracycline exposure (PR = 1.13, 95% CI = 1.03 to 1.25), abdominal radiation (PR = 1.16, 95% CI = 1.04 to 1.29), and increasing CHC burden were associated with elevated PSQI scores (PRs = 1.21-1.48). CONCLUSIONS: Among survivors, sleep problems were more closely related to CHC than diagnosis or treatment history, although longitudinal research is needed to determine the direction of this association. Frequent sleep-promoting medication use suggests interest in managing sleep problems; behavioral sleep intervention is advised for long-term management.
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Supervivientes de Cáncer , Neoplasias , Trastornos del Sueño-Vigilia , Humanos , Niño , Femenino , Adulto , Masculino , Neoplasias/terapia , Calidad de Vida/psicología , Trastornos del Sueño-Vigilia/complicaciones , Trastornos del Sueño-Vigilia/epidemiología , Trastornos del Sueño-Vigilia/psicología , Enfermedad Crónica , SueñoRESUMEN
OBJECTIVE: This systematic review examined the effectiveness of Emergency Department-based and initiated youth suicide prevention interventions for suicide attempts, suicidal ideation, hospitalization, family system functioning, and other mental health symptoms. METHODS: We searched five databases for randomized controlled trial (RCT) studies that examined Emergency Department-based and initiated suicide prevention interventions among youth aged 10 to 18 years old between May 2020 to June 2022. Using Cohen's d and 95% confidence interval as our standardised metrics, we followed the Preferred Reporting Items for Systematic Review and Meta-Analyses (PRISMA) and Synthesis Without Meta-Analysis in Systematic Reviews (SWiM) guidelines when synthesizing, interpreting, and reporting the findings of this review. RESULTS: Five studies were included in this review. Findings were first synthesized according to the targeted population of the study intervention and this review's outcomes. Two interventions were effective for decreasing depressive symptoms, hospitalization recidivism, and/or increasing family empowerment. There were no interventions that reduced subsequent suicide attempts. A meta-analysis was not conducted due to the heterogeneity of the data. CONCLUSION: A need exists to develop and evaluate Emergency Department-based and initiated youth suicide prevention interventions that can be successfully and sustainably implemented in practice. Future research should focus on evaluating the components of interventions that effectively mitigate suicide risk among high-risk youth.
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Trastornos Mentales , Prevención del Suicidio , Humanos , Adolescente , Niño , Intento de Suicidio/prevención & control , Ideación Suicida , Servicio de Urgencia en HospitalRESUMEN
BACKGROUND: Improved survival rates for children with intestinal failure (IF) have resulted in an increased population of children receiving long-term parenteral nutrition (PN). Our objective was to determine burden on caregivers of children with IF receiving long-term PN. METHODS: We performed a cross-sectional study of caregivers of children with IF receiving long-term PN in our intestinal rehabilitation program. A healthy comparison group matched on age of the child was enrolled. All participants completed standardized questionnaires, including the Parental Stress Index - Short Form (PSI-SF), Hospital Anxiety and Depression Scale (HADS), and PedsQL Family Impact Module (PedsQL FIM). Univariate analysis was completed using a Student t test and chi-square, with an alpha value of <0.05 considered significant. RESULTS: Thirty-eight caregivers of children with IF and 29 caregivers of healthy children consented, with response rates of 89% and 96.5%, respectively. Our study demonstrated increased stress for caregivers compared with comparison parents (PSI-SF total score of 83 [SD = 26.8] vs 62.9 [SD = 13.5]; P < 0.01). Caregivers had increased anxiety (HADS anxiety score of 9.3 [SD = 4.8] vs 6.7 [SD = 3.2]; P = 0.02) and higher depression scores (HADS depression score of 6.3 [SD = 4.3] vs 4.1 [SD = 2.6]; P = 0.02) compared with the comparison group. Caregivers of children with IF demonstrated decreased health-related quality of life (HRQoL) (reduced PedsQL FIM total score of 50.6 [SD = 18.2] vs 84.1 [SD = 20.5]; P < 0.01). CONCLUSIONS: Our results demonstrated significant burden of care in caregivers of children with IF receiving long-term PN, with elevated stress, anxiety, and depression and decreased HRQoL.
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Insuficiencia Intestinal , Calidad de Vida , Humanos , Niño , Estudios Transversales , Cuidadores , Depresión/epidemiología , Ansiedad , Encuestas y Cuestionarios , Nutrición ParenteralRESUMEN
PURPOSE: Parents of children with autism spectrum disorder often report poorer sleep compared to parents of typically developing children. When parents do not obtain enough quality sleep, functioning may be compromised placing the onus of care on already stressed parents. However, improving sleep duration may not improve sleep quality and is not always feasible. This study aimed to measure sleep quality in parents of children with autism spectrum disorder, determine if stress and children's sleep are associated with sleep quality and whether resources, appraisals, and coping moderate these relationships. MATERIALS AND METHODS: Multivariable regression was used to determine the effects of stress and children's sleep problems on sleep quality and test modifying effects. RESULTS: Mean (SD) Pittsburgh Sleep Quality Index scores was 8.81 (3.76), with 77.6% of parents scoring above the clinical cut-off. Mean (SD) Children's Sleep Habits Questionnaire scores was 54.03 (8.32), with 96.3% of parents rating their child's sleep above the clinical cut-off. Children's sleep was the only significant predictor and none of the expected effect modifiers were significant. CONCLUSION: Children's sleep may be an important target to improve parent sleep quality but requires systematic assessment with interventional research. Implications for rehabilitationBoth parents and their 4-10-year-old children with ASD experience high levels of sleep disturbances.Clinicians can start the conversation early with parents about their children's sleep by providing them with information to increase awareness and recognize healthy sleep habits in their children.Clinicians are important in the assessment, management, and evaluation of pediatric sleep problems, which may have significant spillover effects on parents of children with ASD.There is a need for more resources and training to be available to clinicians to assess children and their parents for sleep problems, which could extend beyond the assessment of sleep and consider parent's daytime functioning and mental health.
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Trastorno del Espectro Autista , Trastornos del Sueño-Vigilia , Niño , Humanos , Preescolar , Calidad del Sueño , Padres , Sueño , Trastornos del Sueño-Vigilia/etiología , Encuestas y CuestionariosRESUMEN
Sleep is a complex process and is needed both in health and illness. Deprivation of sleep is known to have multiple negative physiological effects on people's bodies and minds. Despite the awareness of these harmful effects, previous studies have shown that sleep is poor among hospitalised patients. We utilized an observational design with 343 patients recruited from medical and surgical units in 12 hospitals located in nine Spanish regions. Sociodemographic and clinical characteristics of patients were collected. Sleep quality at admission and during hospitalisation was measured by the Pittsburgh Sleep Quality Index. Sleep quantity was self-reported by patients in hours and minutes. Mean PSQI score before and during hospitalisation were respectively 8.62 ± 4.49 and 11.31 ± 4.04. Also, inpatients slept about an hour less during their hospital stay. Lower educational level, sedative medication intake, and multi-morbidity was shown to be associated with poorer sleep quality during hospitalisation. A higher level of habitual physical activity has shown to correlate positively with sleep quality in hospital. Our study showed poor sleep quality and quantity of inpatients and a drastic deterioration of sleep in hospital versus at home. These results may be helpful in drawing attention to patients' sleep in hospitals and encouraging interventions to improve sleep.
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Trastornos del Inicio y del Mantenimiento del Sueño , Trastornos del Sueño-Vigilia , Humanos , Hospitales Públicos , Pacientes Internos , Sueño/fisiología , Trastornos del Inicio y del Mantenimiento del Sueño/complicaciones , Calidad del Sueño , Trastornos del Sueño-Vigilia/epidemiología , Trastornos del Sueño-Vigilia/complicaciones , Encuestas y CuestionariosRESUMEN
Persistent intense anger is indicative of postpartum distress, yet maternal anger has been little explored after childbirth. Using grounded theory, we explained how and why mothers develop intense anger after childbirth and the actions they take to manage their anger. Twenty mothers of healthy singleton infants described their experiences of anger during the first two postpartum years. Mothers indicated they became angry when they had violated expectations, compromised needs, and felt on edge (e.g., exhausted, stressed, and resentful), particularly around infants' sleep. Mothers described suppressing and/or expressing anger with outcomes such as conflict and recruiting support. Receiving support from partners, family, and others helped mothers manage their anger, with more positive outcomes. Women should be screened for intense anger, maternal-infant sleep problems, and adequacy of social supports after childbirth. Maternal anger can be reduced by changing expectations and helping mothers meet their needs through social and structural supports.
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Parto , Periodo Posparto , Ira , Femenino , Teoría Fundamentada , Humanos , Lactante , Madres , EmbarazoRESUMEN
Objective: Emotional problems such as anxiety and low mood have been associated with sleep problems in children. The study's objectives were to 1) assess the association between sleep duration and internalizing symptoms (anxiety and low mood) in children aged 5-12 years (y), and 2) evaluate whether insufficient sleep according to the National Sleep Foundation (NSF) guidelines is associated with internalizing symptoms. Methods: A cross-sectional study of N =796 children aged 5-12y, recruited from primary care physicians' offices in Toronto, Canada was conducted through the TARGet Kids! research network. Using linear regression, we investigated 1) the cross-sectional association between parent reported 24-hour sleep duration (hours) and parent reported symptoms using the Strengths and Difficulties Questionnaire (SDQ), controlling for child age, sex, family income, maternal education, family composition, and standardized body-mass index (zBMI). The analysis was repeated using insufficient sleep per NSF guideline as the independent variable. Results: Sleep duration was inversely associated with internalizing symptoms, B estimate = -0.33 (95%CI -0.57, -0.07), p=0.012. Twenty-eight (14%) children aged 5 y, and 36 (6%) of those aged 6-12y, experienced insufficient sleep. There was a trend toward association between insufficient sleep and internalizing symptoms, B estimate = 0.64 (-0.09, 1.38), p=0.086. Conclusion: The relationship between insufficient sleep and internalizing symptoms among children requires further elucidation. Children who show internalizing symptoms may benefit from interventions supporting sleep.
Objectif: Les problèmes émotionnels comme l'anxiété et l'humeur sombre ont été associés à des problèmes de sommeil chez les enfants. Les objectifs de la présente étude étaient de 1) évaluer l'association entre la durée du sommeil et les symptômes d'internalisation (anxiété et humeur sombre) chez les enfants de 5 à 12 ans (a), et 2) évaluer si le sommeil insuffisant selon les lignes directrices de la Fondation nationale du sommeil (FNS) est associé aux symptômes internalisants. Méthodes: Une étude transversale de N =796 enfants de 5 à 12 ans recrutés dans les bureaux de médecins de soins de première ligne à Toronto, Canada, a été menée dans le réseau de recherche TARGet Kids! À l'aide de la régression linéaire, nous avons investigué 1) l'association transversale entre la durée du sommeil (en heures) sur 24 heures rapportée par les parents et les symptômes rapportés par les parents à l'aide du questionnaire des forces et difficultés (QFD), en contrôlant pour l'âge de l'enfant, le sexe, le revenu familial, l'éducation maternelle, la composition de la famille et l'indice de masse corporelle normalisé (IMCn). L'analyse a été répétée avec le sommeil insuffisant selon les lignes directrices de la (FNS) comme variable indépendante. Résultats: La durée du sommeil était inversement associée à des symptômes d'internalisation, estimation B = −0,33 (IC à 95 % −0,57 à-0,07), p = 0,012. Vingt-huit (14 %) enfants âgés de 5 ans, et 36 (6 %) de ceux âgés de 6 à 12 ans avaient un sommeil insuffisant. Il y avait une tendance à l'association entre le sommeil insuffisant et les symptômes d'internalisation; estimation B = 0,64 (−0,09, 1,38), p = 0,086. Conclusion: La relation entre le sommeil insuffisant et les symptômes d'internalisation chez les enfants nécessite des éclaircissements. Les enfants souffrant de symptômes d'internalisation peuvent bénéficier d'interventions favorisant le sommeil.
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OBJECTIVE: To measure the time that caregivers spend on tasks related to providing care to their child with intestinal failure receiving home parenteral nutrition (PN). STUDY DESIGN: We conducted an exploratory cross-sectional study of caregivers of children with intestinal failure receiving long-term PN followed by our intestinal rehabilitation program. Caregivers completed a daily diary of care-related tasks. Data were analyzed using descriptive statistics. Exploratory models were completed to evaluate factors that influenced the amount of time that caregivers spent providing care. SAS University Edition 2018 (SAS Institute, Cary, NC) was used for data analysis with a P value of less than .05 considered significant. RESULTS: Thirty-four caregivers of children with intestinal failure consented with response rates of 85%. The mean age of the primary caregiver was 37 ± 7.9 years of age with 97% being the child's mother. The median PN exposure was 1239 days (IQR, 432-3012). Caregivers reported a median of 29.2 hours per week (IQR, 20.8-45.7 hours per week) of direct medical care. The majority of time was spent on providing PN and care of the central venous catheter (6.1 hours; IQR, 5.2-8.8). CONCLUSIONS: Caregivers of children with intestinal failure receiving long-term PN provide a significant amount of care to ensure their child remains healthy at home. The most significant amounts of time were spent on the administration of the PN and care of the central venous catheter.
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Enfermedades Intestinales , Insuficiencia Intestinal , Nutrición Parenteral en el Domicilio , Humanos , Niño , Adulto , Cuidadores , Estudios Transversales , Atención al Paciente , Enfermedades Intestinales/terapiaRESUMEN
BACKGROUND: Although some women experience anger as a mood problem after childbirth, postpartum anger has been neglected by researchers. Mothers' and infants' poor sleep quality during the postpartum period has been associated with mothers' depressive symptoms; however, links between mothers' sleep quality and postpartum anger are unclear. This study aimed to determine proportions of women with intense anger, depressive symptoms, and comorbid intense anger and depressive symptoms, and to examine mothers' and infants' sleep quality as correlates of postpartum anger. METHODS: This cross-sectional survey study was advertised as an examination of mothers' and babies' sleep. Women, with healthy infants between 6 and 12 months of age, were recruited using community venues. The survey contained validated measures of sleep quality for mothers and infants, and fatigue, social support, anger, depressive symptoms, and cognitions about infant sleep. RESULTS: 278 women participated in the study. Thirty-one percent of women (n = 85) reported intense anger (≥ 90th percentile on State Anger Scale) while 26% (n = 73) of mothers indicated probable depression (>12 on Edinburgh Postnatal Depression Scale). Over half of the participants rated their sleep as poor (n = 144, 51.8%). Using robust regression analysis, income (ß = -0.11, p < 0.05), parity (ß = 0.2, p < 0.01), depressive symptoms (ß = 0.22, p < 0.01), and mothers' sleep quality (ß = 0.10, p < 0.05), and anger about infant sleep (ß = 0.25, p < 0.01) were significant predictors of mothers' anger. CONCLUSIONS: Mothers' sleep quality and anger about infant sleep are associated with their state anger. Clinicians can educate families about sleep pattern changes during the perinatal time frame and assess women's mood and perceptions of their and their infants' sleep quality in the first postpartum year. They can also offer evidence-based strategies for improving parent-infant sleep. Such health promotion initiatives could reduce mothers' anger and support healthy sleep.
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Ira , Madres/psicología , Periodo Posparto/psicología , Calidad del Sueño , Adulto , Canadá/epidemiología , Estudios Transversales , Depresión/psicología , Femenino , Humanos , Lactante , Masculino , Madres/estadística & datos numéricos , Análisis de Regresión , Clase Social , Factores SocioeconómicosRESUMEN
BACKGROUND: Children with intestinal failure (IF) receiving long-term parenteral nutrition (PN) require significant medical care, including high-risk procedures such as accessing a central venous catheter, with the majority provided by family caregivers in the home. This study sought to understand the experiences of family caregivers. METHODS: This was a qualitative study of family caregivers of children with IF. Participants were recruited from an intestinal rehabilitation program to participate in virtual focus groups, which were recorded and transcribed. Thematic analysis was used to capture and describe experiences. RESULTS: Thirteen caregivers providing care to 11 children participated in three virtual focus groups held between May and June 2020. Data analysis revealed five primary themes: (1) caregiving as a 24/7 commitment, (2) facing constant risk of death, (3) chronic illness creates difficult feelings and emotions, (4) effects on all aspects of family life, and (5) adapting and functioning as a family. The findings of this study pair well with the biopsychosocial model highlighting the need for multifaceted assessment and supports. CONCLUSION: The impact of caring for a child with IF receiving long-term PN is significant for caregivers and their families and has implications for all aspects of their lives. A better understanding of the impact on caregivers and their coping strategies lays the groundwork for the optimization of quality of life for caregivers and their family.
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Cuidadores , Insuficiencia Intestinal , Adaptación Psicológica , Cuidadores/psicología , Niño , Humanos , Nutrición Parenteral , Investigación Cualitativa , Calidad de VidaRESUMEN
BACKGROUND: Sleep concerns are commonly reported by children and youth with cystic fibrosis (CF). Understanding normative sleep in the home environment and as reported from the perspective of patients and parents is a first step in responding to an important clinical concern and developing a sleep intervention strategy. This systematic review aimed to describe actigraphic and self/parent reported measures of sleep quantity; quality; and determine factors associated with poor sleep quantity and/or quality in children and youth (0-25yrs.) with CF. METHODS: Five online databases; Medline, Embase, CINAHL, PsycInfo, and CENTRAL were searched for relevant articles from inception-February 2020. Studies reporting primary data, using either qualitative/quantitative methods or both were eligible for inclusion. Eligible full text articles were independently screened by two reviewers. Data from included studies were independently extracted and synthesized by one reviewer and accuracy verified independently by a second reviewer. RESULTS: This review found 31 articles that met inclusion criteria. Analysis found evidence demonstrating that actigraphic SE was lower, actigraphic nighttime awakenings were greater, and self/parent-reported measures of sleep quality were poorer in children and youth with CF. Study findings related to actigraphic TST, WASO, and self/parent-reported sleep duration were mixed. Thirteen factors demonstrated an association with poor quality sleep. CONCLUSIONS: In children and youth with CF, evidence exists of objectively measured sleep disturbance and poor self/parent reported sleep quality. Further longitudinal and comparative research studies are warranted to better understand sleep disturbance in this population. Clinically, sleep assessment should be an integral part of routine CF care.
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Fibrosis Quística , Trastornos del Sueño-Vigilia , Actigrafía , Adolescente , Niño , Fibrosis Quística/complicaciones , Fibrosis Quística/epidemiología , Fibrosis Quística/terapia , Humanos , Autoinforme , Sueño , Trastornos del Sueño-Vigilia/diagnóstico , Trastornos del Sueño-Vigilia/epidemiología , Trastornos del Sueño-Vigilia/etiologíaRESUMEN
Sibling relationships are one of the most long-lasting and influential relationships in a human's life. Living with a child who has a life-threatening condition changes healthy siblings' experience. This scoping review summarized and mapped research examining healthy siblings' experience of living with a child with a life-threatening condition to identify knowledge gaps and provide direction for future research. Studies were identified through five electronic databases. Of the 34 included studies, 17 used qualitative methods, four gathered data longitudinally and 24 focused on children with cancer. Four broad themes of sibling experience were identified across studies: family functioning, psychological well-being, social well-being, and coping. Siblings experienced challenges and difficulties over the course of the child's illness. Future research should incorporate longitudinal designs to better understand the trajectory of siblings' experiences and focus on a wider variety of life-threatening conditions.
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Adaptación Psicológica , Hermanos , Niño , Humanos , Hermanos/psicología , Autoinforme , Familia , Salud de la FamiliaRESUMEN
STUDY OBJECTIVES: The purpose of this study is to identify factors associated with Neonatal Intensive Care Unit (NICU) mothers' quality of sleep as measured with the General Sleep Disturbance Scale (GSDS). METHODS: Recruitment took place in a level 3 NICU. At enrollment, mothers completed a socio-demographic questionnaire, described their presence in the unit and their breast milk expression behavior. They also completed online or paper questionnaires about NICU-related stress, symptoms of postpartum depression, family-centered care, perception of noise and light in the unit, and sleep disturbances. Data regarding the infant's clinical condition were collected from their medical file. Pearson correlations were performed to identify associations between mothers' quality of sleep and other study variables. Subsequently, to compare mothers with a clinically significant GSDS score to mothers with a non-significant score, a binary logistic regression model was conducted. RESULTS: 132 mothers participated. Sleep disturbances of mothers with an infant hospitalized in the NICU was positively correlated with stress (r = 0.40; p = .00), depressive symptoms (r = 0.51; p = .00), and breast milk expression (r = 0.23; p = .01). In addition, for mothers with significant levels of depressive symptoms (OR = 1.19; p = .00), with greater presence in the unit (OR = 1.36; p = .04), or with other children at home (OR = 3.12; p = .04), the likelihood of clinically significant sleep disturbances was increased. CONCLUSIONS: These results improve our understanding of the factors influencing the quality of sleep of mothers whose premature infant is hospitalized for 2 weeks or more in the NICU. In addition, these results allow the identification of mothers having a higher possibility for sleep disturbance, which enables the implementation of targeted interventions to promote adequate sleep.
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Unidades de Cuidado Intensivo Neonatal , Trastornos del Sueño-Vigilia , Niño , Femenino , Hospitalización , Humanos , Lactante , Recién Nacido , Madres , Sueño , Calidad del SueñoRESUMEN
Introduction: PICU hospitalization can have a profound impact on child survivors and their families. There is limited research on children's long-term recovery within the context of the family following critical illness. This study aimed to explore children's and parents' perceptions of long-term psychological and behavioral responses within the context of the family one year following PICU hospitalization. Materials and Methods: Caring Intensively is a mixed methods multi-site prospective cohort study that aims to examine children's psychological and behavioral responses over a 3-year period following PICU hospitalization. In this study, part of the qualitative arm of Caring Intensively, an interpretive descriptive design was used to explore children's recovery one year post-discharge. Purposive sampling was used to select 17 families, including 16 mothers, 6 fathers, and 9 children. Semi-structured, audio-recorded interviews were conducted. Data were analyzed iteratively using the constant comparison method. Results: Families described efforts to readapt to routine life and find a new normal following PICU hospitalization. Finding a New Normal consisted of four major themes: (1) Processing PICU Reminders and Memories, (2) Changing Perceptions of Health and Illness, (3) We Are Not the Same, and (4) Altered Relationships. Participants described significant emotional and behavioral changes during the year following discharge. The psychological impact of individual family members' experiences led to changes in their sense of self, which affected family dynamics. PICU memories and reminders impacted participants' perceptions of childhood health and illness and resulted in increased vigilance. Parents and siblings demonstrated increased concern for the child survivor's health, and the experience of long absences and new or altered caregiving roles resulted in changes in relationships and family dynamics. Conclusion: PICU hospitalization impacted the psychological well-being of all family members as they sought to re-establish a sense of normalcy one year following discharge. Parent and child experiences and responses were closely interconnected. Findings highlight the importance of increased follow-up care aimed at supporting the family's psychological recovery.
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OBJECTIVE: The COVID-19 pandemic has the potential to disrupt the lives of families and may have implications for children with existing sleep problems. As such, we aimed to: (1) characterize sleep changes during the COVID-19 pandemic in children who had previously been identified as having sleep problems, (2) identify factors contributing to sleep changes due to COVID-19 safety measures, and (3) understand parents' and children's needs to support sleep during the pandemic. METHODS: Eighty-five Canadian parents with children aged 4-14 years participated in this explanatory sequential, mixed-methods study using an online survey of children's and parents' sleep, with a subset of 16 parents, selected based on changes in their children's sleep, participating in semi-structured interviews. Families had previously participated in the Better Nights, Better Days (BNBD) randomized controlled trial. RESULTS: While some parents perceived their child's sleep quality improved during the COVID-19 pandemic (14.1%, n = 12), many parents perceived their child's sleep had worsened (40.0%, n = 34). Parents attributed children's worsened sleep to increased screen time, anxiety, and decreased exercise. Findings from semi-structured interviews highlighted the effect of disrupted routines on sleep and stress, and that stress reciprocally influenced children's and parents' sleep. CONCLUSIONS: The sleep of many Canadian children was affected by the first wave of the COVID-19 pandemic, with the disruption of routines influencing children's sleep. eHealth interventions, such as BNBD with modifications that address the COVID-19 context, could help families address these challenges.
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COVID-19 , Pandemias , Canadá , Niño , Humanos , Padres , SARS-CoV-2 , SueñoRESUMEN
BACKGROUND: As preterm infants' neurodevelopment is shaped by NICU-related factors during their hospitalization, it is essential to evaluate which interventions are more beneficial for their neurodevelopment at this specific time. The objective of this systematic review and meta-analysis was to evaluate the effectiveness of interventions initiated during NICU hospitalization on preterm infants' early neurodevelopment during their hospitalization and up to two weeks corrected age (CA). METHODS: This systematic review referred to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses [PRISMA] guidelines and was registered in PROSPERO (CRD42017047072). We searched CINAHL, MEDLINE, PubMed, EMBASE (OVID), Cochrane Systematic Reviews, CENTRAL, and Web of Science from 2002 to February 2020 and included randomized controlled/clinical trials conducted with preterm infants born between 24 and 366/7 weeks of gestation. All types of interventions instigated during NICU hospitalization were included. Two independent reviewers performed the study selection, data extraction, assessment of risks of bias and quality of evidence. RESULTS: Findings of 12 studies involving 901 preterm infants were synthesized. We combined three studies in a meta-analysis showing that compared to standard care, the NIDCAP intervention is effective in improving preterm infants' neurobehavioral and neurological development at two weeks CA. We also combined two other studies in a meta-analysis indicating that parental participation did not significantly improve preterm infants' neurobehavioral development during NICU hospitalization. For all other interventions (i.e., developmental care, sensory stimulation, music and physical therapy), the synthesis of results shows that compared to standard care or other types of comparators, the effectiveness was either controversial or partially effective. CONCLUSIONS: The overall quality of evidence was rated low to very low. Future studies are needed to identify interventions that are the most effective in promoting preterm infants' early neurodevelopment during NICU hospitalization or close to term age. Interventions should be appropriately designed to allow comparison with previous studies and a combination of different instruments could provide a more global assessment of preterm infants' neurodevelopment and thus allow for comparisons across studies. TRIAL REGISTRATION: Prospero CRD42017047072 .
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Hospitalización , Recien Nacido Prematuro , Humanos , Lactante , Recién Nacido , PadresRESUMEN
Importance: Children's sleep may be affected by hospitalization, yet few objective determinations of sleep patterns are reported for children in intensive care or general medicine units. There is limited research on relationships between sleep in hospital and child (eg, age, pain), treatment (eg, medications, nurse presence), or environmental (eg, noise, light, type of unit) factors. Objective: To determine sleep quantity and patterns in hospitalized children and determine factors associated with sleep quantity and nighttime waking for children in hospital. Design, Setting, and Participants: This was a prospective cross-sectional study of children admitted to a general pediatric unit or a pediatric intensive care unit at a pediatric quaternary teaching hospital in Toronto, Ontario, Canada, from October 2007 to July 2008. Participants included children aged 1 to 18 years who were expected to stay in hospital for at least 2 nights. Demographic data, information about the hospital stay and illness, and usual sleep habits were collected. Children wore an actigraph for 1 to 3 consecutive days and nights and completed a sleep diary. Sound and light meters were placed at the bedside. Data analyses took place in April 2009. Main Outcomes and Measures: The primary outcome was the mean number of minutes of child nighttime sleep from 7:30 pm to 7:29 am. Sleep variables were averaged over days and nights recorded (mean [SD] days and nights of wear, 2.54 [0.71]) and examined for associations with sleep quantity and patterns, as well as hazard of waking in the night. Results: Of 124 eligible children approached for inclusion, 69 children consented (35 [51%] female; 20 [29%] aged 1-3 years, 10 [14%] aged 4-7 years, 17 [24%] aged 8-12 years, and 22 [32%] aged 13-18 years; 58 [84%] in the general pediatric unit). Children aged 1 to 3, 4 to 7, 8 to 12, and 13 to 18 years obtained a mean (SD) of 444 (132), 475 (86), 436 (114), and 384 (83) minutes of nighttime sleep, respectively; mean (SD) number of night awakenings was 14 (3), 18 (3), 14 (8), and 12 (6), respectively. Children on general pediatric units slept 258 minutes more per night than children sleeping in the pediatric intensive care unit (95% CI, 165.16-350.56 minutes; P < .001), children admitted for planned surgery slept 123 minutes more than children admitted for exacerbations of chronic illness (95% CI, 49.23-196.01 minutes; P < .01), and children sleeping in rooms with other patients slept 141 minutes fewer than children in private rooms (95% CI, -253.51 to -28.35 minutes; P = .01). Sound events greater than 80 dB were significantly associated with increased risk of instantaneous waking (hazard ratio [HR], 1.35; 95% CI, 1.02-1.80; P = .04), as were light events greater than 150 lux (HR, 1.17; 95% CI, 1.01-1.36; P = .03), receiving a medication that promoted sleep (HR, 1.04; 95% CI, 1.00-1.08; P = .03), and having a nurse in the room for most or all of the night (HR, 1.08; 95% CI, 1.03-1.13; P = .003). Sleeping on the general pediatrics unit was significantly associated with decreased risk of instantaneous waking (HR, 0.81; 95% CI, 0.77-0.85; P < .001), as was being admitted for planned surgery (HR, 0.95; 95% CI, 0.91-0.99; P = .04), receiving a medication that promoted wakefulness (HR, 0.96; 95% CI, 0.93-0.995; P = .02), and sharing a room with another patient (HR, 0.78; 95% CI, 0.72-0.84; P < .001). Conclusions and Relevance: In this cross-sectional study of hospitalized children, children experienced considerable nighttime waking and sleep restriction to levels below national clinical recommendations at a time when they most needed the benefits of sleep. Given light and noise were the greatest contributors to nighttime waking in hospital, clinicians, administrators and hospital design experts should work together for solutions.
Asunto(s)
Niño Hospitalizado/psicología , Privación de Sueño/etiología , Trastornos del Sueño-Vigilia/etiología , Sueño/fisiología , Adolescente , Niño , Niño Hospitalizado/estadística & datos numéricos , Preescolar , Estudios Transversales , Femenino , Hospitales Pediátricos , Humanos , Lactante , Masculino , Ruido/efectos adversos , Ontario , Estudios ProspectivosRESUMEN
INTRODUCTION: The 'Developmental Origins of Health and Disease' hypothesis suggests that a healthy trajectory of growth and development in pregnancy and early childhood is necessary for optimal health, development and lifetime well-being. The purpose of this paper is to present the protocol for a randomised controlled trial evaluating a preconception-early childhood telephone-based intervention with tailored e-health resources for women and their partners to optimise growth and development among children in Canada: a Healthy Life Trajectory Initiative (HeLTI Canada). The primary objective of HeLTI Canada is to determine whether a 4-phase 'preconception to early childhood' lifecourse intervention can reduce the rate of child overweight and obesity. Secondary objectives include improved child: (1) growth trajectories; (2) cardiometabolic risk factors; (3) health behaviours, including nutrition, physical activity, sedentary behaviour and sleep; and (4) development and school readiness at age 5 years. METHOD AND ANALYSIS: A randomised controlled multicentre trial will be conducted in two of Canada's highly populous provinces-Alberta and Ontario-with 786 nulliparous (15%) and 4444 primiparous (85%) women, their partners and, when possible, the first 'sibling child.' The intervention is telephone-based collaborative care delivered by experienced public health nurses trained in healthy conversation skills that includes detailed risk assessments, individualised structured management plans, scheduled follow-up calls, and access to a web-based app with individualised, evidence-based resources. An 'index child' conceived after randomisation will be followed until age 5 years and assessed for the primary and secondary outcomes. Pregnancy, infancy (age 2 years) and parental outcomes across time will also be assessed. ETHICS AND DISSEMINATION: The study has received approval from Clinical Trials Ontario (CTO 1776). The findings will be published in peer-reviewed journals and disseminated to policymakers at local, national and international agencies. Findings will also be shared with study participants and their communities. TRIAL REGISTRATION NUMBER: ISRCTN13308752; Pre-results.