Carrying the Burden: Informal Care Requirements by Caregivers of Children with Intestinal Failure Receiving Home Parenteral Nutrition.

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.

Correlates of Canadian mothers' anger during the postpartum period: a cross-sectional survey.

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.

Factors Influencing Mothers' Quality of Sleep during Their Infants' NICU Hospitalization.

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.

Seeing Red: A Grounded Theory Study of Women's Anger after Childbirth.

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.

Children's Sleep During COVID-19: How Sleep Influences Surviving and Thriving in Families.

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.

Effectiveness of interventions on early neurodevelopment of preterm infants: a systematic review and meta-analysis.

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 .

A call to action for expanded sleep research in pediatric oncology: A position paper on behalf of the International Psycho-Oncology Society Pediatrics Special Interest Group.

Sleep and circadian rhythms are closely related to physical and psychosocial well-being. However, sleep and circadian rhythm disruptions are often overlooked in children with cancer, as they are frequently considered temporary side effects of therapy that resolve when treatment ends. Yet, evidence from adult oncology suggests a bidirectional relationship wherein cancer and its treatment disrupt sleep and circadian rhythms, which are associated with negative health outcomes such as poor immune functioning and lower survival rates. A growing body of research demonstrates that sleep problems are prevalent among children with cancer and can persist into survivorship. However, medical and psychosocial outcomes of poor sleep and circadian rhythmicity have not been explored in this context. It is essential to increase our understanding because sleep and circadian rhythms are vital components of health and quality of life. In children without cancer, sleep and circadian disturbances respond well to intervention, suggesting that they may also be modifiable in children with cancer. We present this paper as a call to (a) incorporate sleep or circadian rhythm assessment into pediatric cancer clinical trials, (b) address gaps in understanding the bidirectional relationship between sleep or circadian rhythms and health throughout the cancer trajectory, and (c) integrate sleep and circadian science into oncologic treatment.

A comparative study of mothers of infants hospitalized in an open ward neonatal intensive care unit and a combined pod and single-family room design.

BACKGROUND: The well-being of mothers of infants requiring Neonatal Intensive Care Unit (NICU) hospitalization may be affected by the architectural design of the unit. A few recent studies suggest there may be some drawbacks of single-family rooms (SFRs) for infants and their mothers, such as isolation of mothers and reduced exposure to auditory stimulation for infants. PURPOSE: To compare NICU-stress, symptoms of depression, perceptions of nurse-parent support and family-centered care, sleep disturbances, breastfeeding self-efficacy and readiness for discharge in mothers of infants cared for in an open ward (OW) to those cared for in a unit that includes both pods and SFRs. METHODS: A pre-post quasi-experimental study was conducted in a Canadian level 3 unit before and after transitioning to a new unit of 6-bed pods and SFRs. OW data were collected in 2014 and pod/SFR data 1 year after the transition in 2017 to 2018. Mothers of infants hospitalized for at least 2 weeks completed questionnaires about stress, depressive symptoms, support, family-centered care, and sleep disturbances. In the week prior to discharge, they responded to breastfeeding self-efficacy and readiness for discharge questionnaires. They described their presence in the NICU at enrollment and again prior to discharge. RESULTS: Pod/SFR mothers reported significantly less NICU-stress compared to OW mothers. OW mothers had greater sights and sounds stress and felt more restricted in their parental role. Pod/SFR mothers reported greater respect from staff. Controlling for maternal education, pod/SFR mothers perceived their infant's readiness for discharge to be greater than OW mothers. There were no significant differences between groups in depressive symptoms, nurse-parent support, sleep disturbances, and breastfeeding self-efficacy. At enrollment and again in the weeks preceding discharge, pod/SFR mothers were present significantly more hours per week than OW mothers, controlling for maternal education. CONCLUSIONS: Further study of small pods is indicated as these units may be less stressful for parents, and enhance family-centered care, as well as maternal presence, compared to OWs.

Self-Reported Sleep Quality and Actigraphic Measures of Sleep in New Mothers and the Relationship to Postpartum Depressive Symptoms.

Objective: This study's purpose is to examine relationships between self-reported sleep quality, actigraphy data, and depressive symptoms in a sample of women at 6 and 12 weeks postpartum. Methods: This secondary analysis of data from a randomized controlled trial (RCT) of a behavioral sleep intervention measured sleep with actigraphy and self-report. Self-reported measures included the General Sleep Disturbance Scale (GSDS) and mothers' reports of their sleep as a "small/big/no" problem. Depression was measured with the Edinburgh Postnatal Depression Scale (EPDS). Control variables included group allocation, baseline EPDS, and social support. Logistic regression estimated the association between self-reported and actigraphic measures of sleep and the presence of postpartum depressive symptoms. Separate models estimated the odds of depression according to each sleep variable. Results: In 217 first-time mothers, GSDS scores in the last week of pregnancy were not related to depression; however, GSDS scores at 6 weeks postpartum were associated with > 3 times the odds of depressive symptoms (OR = 3.56; 95% CI = 1.73-7.33) at either 6 or 12 weeks postpartum. The perception that sleep was a "small" or "big" problem at 6 weeks was associated with > 3 (OR = 3.40; 95% CI = 1.54-7.46) and > 8 (OR = 8.29; 95% CI = 2.41-28.59) times the odds of depressive symptoms at either 6 or 12 weeks, respectively. Significant associations between actigraphic sleep measures and depressive symptoms were not found. Conclusion: Self-reported sleep quality is strongly associated with postpartum depressive symptoms. Sleep concerns may be an important clinical indicator of low mood in the postpartum period. Future intervention studies to improve mood could target sleep concerns via cognitive-behavioral strategies.

Prevalence and Predictors of Postpartum Maternal and Infant Bed-Sharing Among Chinese-Canadian Women.

Objective/Background: Our primary objective was to describe and identify predictors of any and predominant bed-sharing at 4 and 12 weeks postpartum among Chinese-Canadian mothers. Participants: We conducted a longitudinal study of 570 Chinese immigrant and Canadian-born women in Toronto, Ontario. Methods: Any bed-sharing, defined as sharing a bed or mattress for any part of the night on any night in the previous week, and predominant bed-sharing, defined as sharing a bed or mattress for most of the night, on more than half the nights of the previous week, were evaluated at 4 and 12 weeks postpartum. Predictors of bed-sharing, evaluated in multivariable logistic regression models, were background (age, parity, education, household size, delivery mode, social support), cultural (immigrant status, acculturative stress, acculturation, postpartum ritual uptake), and postpartum variables (mental health, breastfeeding problems, fatigue, sleep knowledge, plans for bed-sharing, perceptions of infant sleep problems, cognitions about infant sleep). Results: One in five women (20.7%) reported bed-sharing as the predominant sleep location for their infant at 4 weeks postpartum, with nearly half (45.6%) reporting any bed-sharing at this time. The prevalence of any bed-sharing remained relatively stable at 12 weeks postpartum (46.5%), while predominant bed-sharing increased to 30.1%. The most consistent predictors of any and predominant bed-sharing at 4 and 12 weeks postpartum were lower education level, greater acculturative stress, and predelivery plans to bed-share. Conclusions: These findings have implications for the development of clinical recommendations given to expectant and new parents to promote infant sleep practices that are consistent with American Academy of Pediatrics recommendations.

Acceptability to nurses of reducing NICU light and noise levels during skin-to-skin care: A pilot study.

INTRODUCTION: Light and noise levels may influence preterm infants and their mothers when they are experiencing skin-to-skin contact [SSC] in the Neonatal Intensive Care Unit [NICU]. METHODS: A pilot randomized controlled trial [RCT] of an intervention aiming at reducing light and noise levels during SSC was conducted. Twenty-one neonatal nurses from a level III NICU completed questionnaires assessing their acceptability of NICU light and noise levels reduction during SSC, whether it interfered with their care delivery, in addition to acceptability of specific interventions reducing these levels. FINDINGS: The majority of nurses considered that the reduction of NICU light and noise levels during SSC was acceptable in general, did not interfere with their care delivery, and that the nine selected interventions were also acceptable. CONCLUSION AND RESEARCH IMPLICATIONS: Nurses found it acceptable to reduce NICU light and noise levels during SSC. These findings support the conduct of a full-scale RCT to evaluate the effect of such an intervention on preterm infants and mothers' well-being.

A Pilot Randomized Controlled Trial of an Intervention to Promote Psychological Well-Being in Critically Ill Children: Soothing Through Touch, Reading, and Music.

OBJECTIVES: To examine the feasibility and acceptability of a PICU Soothing intervention using touch, reading, and music. DESIGN: Nonblinded, pilot randomized controlled trial. SETTING: The PICU and medical-surgical wards of one Canadian pediatric hospital. PATIENTS: Twenty PICU patients age 2-14 years old and their parents, randomized to an intervention group (n = 10) or control group (n = 10). INTERVENTION: PICU Soothing consisted of: 1) parental comforting (touch and reading), followed by 2) a quiet period with music via soft headbands, administered once daily throughout hospitalization. MEASUREMENTS AND MAIN RESULTS: Acceptability and feasibility of the intervention and methods were assessed via participation rates, observation, measurement completion rates, semistructured interviews, and telephone calls. Psychological well-being was assessed using measures of distress, sleep, and child and parent anxiety in the PICU, on the wards and 3 months post discharge. Forty-four percent of parents agreed to participate. Seventy percent and 100% of intervention group parents responded positively to comforting and music, respectively. Most intervention group parents (70%) and all nurses felt children responded positively. All nurses found the intervention acceptable and feasible. Measurement completion rates ranged from 70% to 100%. Pilot data suggested lower intervention group child and parent anxiety after transfer to hospital wards. CONCLUSIONS: PICU Soothing is acceptable and feasible to conduct. Results support the implementation of a full-scale randomized controlled trial to evaluate intervention effectiveness.

A Behavioral-Educational Intervention to Promote Pediatric Sleep During Hospitalization: A Pilot Randomized Controlled Trial.

OBJECTIVE/BACKGROUND: Hospitalization can contribute to common sleep difficulties in children. Interventions aimed at hospitalized children need to be developed and piloted with rigorous evaluative methods. The primary purpose of this study was to examine the feasibility and acceptability of a behavioral-educational intervention aimed at increasing nighttime sleep for hospitalized children. PARTICIPANTS: Hospitalized children aged 4-10 years and their caregivers. METHODS: A pilot randomized, controlled trial with concealed-group allocation was conducted. Forty-eight hospitalized children (ages 4-10) and their care-givers were randomized to either the Relax to Sleep (RTS) intervention group (n = 24) or the Usual Care (UC) comparison group (n = 24). The RTS intervention was comprised of a one-on-one educational session for the parent that was guided by a standardized booklet containing information on sleep and instructions for training the child in the use of a diaphragmatic breathing exercise. UC participants received no information about sleep or relaxation. Children wore actigraphs for 3 days and nights and completed sleep diaries. Outcome measures included feasibility, acceptability, and sleep outcomes. RESULTS: Parental reports indicated they enjoyed the discussion on sleep, found the information helpful, and their child found diaphragmatic breathing easy to use, and would use it again in the future. Children in the RTS group averaged 50 minutes more nighttime sleep, and had less wake after sleep onset time compared to children in the UC group. CONCLUSION: Sleep is critically important to children's health and well-being and should be given important consideration during hospitalization. Although the results of this pilot trial seem promising, more interventional studies are needed.

Sleep Outcomes for Parents of Children With Neurodevelopmental Disabilities: A Systematic Review.

Parents of children with Neurodevelopmental Disabilities (NDDs) are at risk of sleep loss. No comprehensive systematic reviews examining parental sleep outcomes in caregivers of children with NDDs exist. A systematic search was conducted between June and August 2016 examining sleep quantity, quality, sleepiness, and fatigue outcomes of caregivers of children with NDDs. Of 7,534 citations retrieved, 33 met eligibility criteria. Most studies ( n = 27) were cross-sectional, included a range of NDDs and were of "poor" ( n = 14) or "fair" ( n = 17) quality. Few good quality studies compared objectively measured sleep in parents of children with NDDs with parents with typically developing children. Parents of children with NDDs consistently reported significantly poorer subjective sleep quality. There is a paucity of good quality comparative studies, using well-validated measures, examining parental sleep outcomes. Future research should aim to fill this gap, providing greater insight to parents' experiences, and identifying targets for intervention design and evaluation.

Psychological Outcomes in Parents of Critically Ill Hospitalized Children.

Parents of children in pediatric intensive care units (PICUs) are subjected to significant psychological stress. The purpose of this study was to determine the prevalence of, and factors associated with anxiety, depressive symptoms and decisional conflict in parents of children hospitalized in the PICU. The study employed a descriptive, cross-sectional design to investigate the psychological status of 118 parents of 91 children (74 mothers and 44 fathers) admitted to the PICU, using measures of anxiety (STAI), depression (CES-D), and decisional conflict (DCS). Using hospital data and self-administered questionnaires, information on child and parent characteristics and psychological outcomes were collected. Objective measures of parental sleep also were examined using actigraphy and sleep diaries. The research findings indicated that 24% of parents achieved scores characteristic of severe anxiety. Proportions of parents with symptoms indicative of major depression and significant decisional conflict were 51% and 26% respectively. For all psychological outcomes, higher levels of social support were protective. Inconsistency in sleep schedule and sleep location affected psychological outcomes and are possible targets for future interventions. Given evidence that parents of children admitted to the PICU are at risk for developing post-traumatic stress symptoms, future studies should examine the effects of hospitalization on long-term parental psychological outcomes. Screening for those at risk and implementing interventions to promote coping strategies and reduce decisional conflict may be beneficial. Pediatric nurses have a critical role in assessing parents' psychological distress and promoting family health during a child's hospitalization.

Nurses' views of factors affecting sleep for hospitalized children and their families: A focus group study.

Light, noise, and interruptions from hospital staff lead to frequent awakenings and detrimental changes to sleep quantity and quality for children who are hospitalized and their parents who stay with them overnight. An understanding of nurses' views on how care affects sleep for the hospitalized child and parent is crucial to the development of strategies to decrease sleep disturbance in hospital. The purpose of this descriptive qualitative study was to gain an understanding of nurses' views on their role in and influence on sleep for families; perceived barriers and facilitators of patient and parent sleep at night; strategies nurses use to preserve sleep; the distribution, between parent and nurse, of care for the child at night; views of the parent as a recipient of nursing care at night; and the nature of interactions between nurses and families at night. Thirty registered nurses from general pediatric and critical care units participated in one of four semi-structured focus groups. Four main influences on sleep were identified: child factors; environmental factors; nurse-parent interaction factors; and nursing care factors. Some of these restricted nurses' ability to optimize sleep, but many factors were amenable to intervention. Balancing strategies to preserve sleep with the provision of nursing assessment and intervention was challenging and complicated by the difficult nature of work outside of usual waking hours. Nurses highlighted the need for formal policy and mentoring related to provision of nursing care at night in pediatric settings.

Sleep, sleepiness, and fatigue outcomes for parents of critically ill children.

OBJECTIVES: To describe sleep quantity, sleep patterns, fatigue, and sleepiness for parents of critically ill hospitalized children. DESIGN: Prospective observational study. SETTING: Quaternary academic PICU. PARTICIPANTS: One hundred eighteen parents of 91 children recruited during their child's PICU stay. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: For 5 days and nights, parents wore an actigraph to determine objective sleep-wake times and reported sleep location, level of fatigue (Fatigue Visual Analogue Scale), and sleepiness (Stanford Sleepiness Scale). Mean amounts of nocturnal sleep were less than recommended for optimal health (398 min, fathers vs 422 min, mothers; p = 0.04). Parents woke frequently (7.8 wakes, fathers; 7.2 wakes, mothers) and spent over an hour awake at night (65 min, fathers; 60 min, mothers). On 130 nights (26%), parents slept less than 6 hours and 209 nights (44%) were evaluated as "worse" sleep than usual. Fifty-four parents (53%) experienced more than 30% difference in minutes of sleep between consecutive nights. Mean morning fatigue levels (41 mm, fathers vs 46 mm, mothers; p = 0.03) indicated clinically significant fatigue. Sleeping in a hotel, parent room, or residence was associated with 3.2 more wakes per night (95% CI, 0.61-5.78; p = 0.015) than sleeping in a hospital lounge or waiting room. CONCLUSIONS: We performed a prospective observational study of 118 parents of critically ill children using objective measures of sleep and validated scales to assess fatigue and sleepiness. We found that more than a quarter of nights met criteria for acute sleep deprivation, there was considerable variability in the amount of nocturnal sleep that individual participants slept on different nights, and sleep was fragmented with a large portion of the night spent awake. Future research should focus on interventions that improve parents' ability to return to sleep upon awakening and maintain regular sleep-wake schedules.

Children's psychological and behavioral responses following pediatric intensive care unit hospitalization: the caring intensively study.

BACKGROUND: Pediatric intensive care unit (PICU) hospitalization places children at increased risk of persistent psychological and behavioral difficulties following discharge. Despite tremendous advances in medical technology and treatment regimes, approximately 25% of children demonstrate negative psychological and behavioral outcomes within the first year post-discharge. It is imperative that a broader array of risk factors and outcome indicators be explored in examining long-term psychological morbidity to identify areas for future health promotion and clinical intervention. This study aims to examine psychological and behavioral responses in children aged 3 to 12 years over a three year period following PICU hospitalization, and compare them to children who have undergone ear, nose and/or throat (ENT) day surgery. METHODS/DESIGN: This mixed-methods prospective cohort study will enrol 220 children aged 3 to 12 years during PICU hospitalization (study group, n = 110) and ENT day surgery hospitalization (comparison group, n = 110). Participants will be recruited from 3 Canadian pediatric hospitals, and followed for 3 years with data collection points at 6 weeks, 6 months, 1 year, 2 years and 3 years post-discharge. Psychological and behavioral characteristics of the child, and parent anxiety and parenting stress, will be assessed prior to hospital discharge, and again at each of the 5 subsequent time points, using standardized measures. Psychological and behavioral response scores for both groups will be compared at each follow-up time point. Multivariate regression analysis will be used to adjust for demographic and clinical variables at baseline. To explore baseline factors predictive of poor psychological and behavioral scores at 3 years among PICU patients, correlation analysis and multivariate linear regression will be used. A subgroup of 40 parents of study group children will be interviewed at years 1 and 3 post-discharge to explore their perceptions of the impact of PICU hospitalization on their children and enhance our understanding of findings generated from standardized measures in the larger cohort study. An interpretive descriptive approach will guide qualitative data collection and analysis. DISCUSSION: This study aims to generate new information regarding the magnitude and duration of psychological and behavioral disturbances among children admitted to PICUs, potentially leading to remedial or preventive interventions.

Bourdieu at the bedside: briefing parents in a pediatric hospital.

The philosophy of family-centered care (FCC) promotes partnerships between families and staff to plan, deliver, and evaluate services for children and has been officially adopted by a majority of pediatric hospitals throughout North America. However, studies indicated that many parents have continued to be dissatisfied with their decision-making roles in their child's care. This is particularly salient for parents of children with chronic ongoing complex health problems. These children are dependent upon medical technology and require frequent hospitalizations during which parents must contribute to difficult decisions regarding their child's care. Given this clinical issue, an alternative theoretical perspective was explored to redress this problem. Pierre Bourdieu's theoretical concepts of field, capital, and habitus were used to analyze the hierarchical relationships in pediatric acute care hospitals and to design a briefing intervention aimed at improving parents' satisfaction with decision making in that health care setting.