Navigating the healthcare system with my child with CHD: parental perspectives on developmental follow-up practices.

BACKGROUND: Parents of children with CHD face several barriers when trying to access the services needed to support their child's development. In fact, current developmental follow-up practices may not identify developmental challenges in a timely manner and important opportunities for interventions may be lost. This study aimed to explore the perspectives of parents of children and adolescents with CHD with respect to developmental follow-up in Canada. METHODS: Interpretive description was used as a methodological approach for this qualitative study. Parents of children aged 5-15 years with complex CHD were eligible. Semi-structured interviews that aimed to explore their perspectives regarding their child's developmental follow-up were conducted. RESULTS: Fifteen parents of children with CHD were recruited for this study. They expressed that the lack of systematic and responsive developmental follow-up services and limited access to resources to support their child's development placed an undue burden on their families, and as a result, they needed to assume new roles as case managers or advocates to address these limitations. This additional burden resulted in a high level of parental stress, which, in turn, affected the parent-child relationship and siblings. CONCLUSIONS: The limitations of the current Canadian developmental follow-up practices put undue pressure on the parents of children with complex CHD. The parents stressed the importance of implementing a universal and systematic approach to developmental follow-up to allow for the timely identification of challenges, enabling the initiation of interventions and supports and promoting more positive parent-child relationships.

Identifying developmental challenges of youth with congenital heart defects: A patient-oriented perspective.

BACKGROUND: Youth with congenital heart disease (CHD) are at high risk for a range of developmental impairments that become evident at different times across childhood and adolescence. This study aimed to explore perspectives of youth with CHD with respect to their developmental follow-up across childhood. METHODS: Interpretive description was used as a methodological approach for this qualitative study. Youth aged 12-22 years with CHD requiring open-heart surgery before 2 years of age and who had received health services in Canada since birth were enrolled. RESULTS: Ten youth with CHD, two males and eight females, aged 13-22 years (mean 19.8) participated in this study. With higher social and academic demands as well as increased level of autonomy associated with older age, some youth faced new challenges that they had not encountered as children. Youth with CHD identified four aspects of the continuum of care as needing to be changed to better respond to their needs. First, the format of developmental follow-up needs to be adapted to their unique challenges. Second, resources must be more easily accessible throughout childhood and adolescence. Third, planning for transition to adult care is essential to ensure continuity of services. Finally, they identified that the school system is an essential component of the continuum of care. CONCLUSIONS: Adolescents and young adults with CHD are at high risk of developing physical, academic and psychosocial challenges; however, timely identification of challenges does not appear to be optimal across domains and transition points, from the perspective of the youth themselves. Youth with CHD reported not having the resources and supports they required to optimize their functioning. Our findings suggest that several approaches could be adopted to enhance identification and outcomes to address the limitations of current Canadian practices.

Nurturing and quiet intervention (NeuroN-QI) on preterm infants' neurodevelopment and maternal stress and anxiety: A pilot randomized clinical trial protocol.

OBJECTIVES: Primary objective of this pilot study is to evaluate the feasibility and acceptability of the NeuroN-QI and the study procedures. Secondary objectives are to assess the feasibility and acceptability of the NeuroN-QI by the nurses, assess the nurses' training needs about the components of the NeuroN-QI, and estimate the preliminary effects of the NeuroN-QI on infants' neurodevelopment as well as maternal stress and anxiety at infants' 36 weeks of gestational age. DESIGN: A two-group pilot parallel randomized clinical trial stratified by center. METHODS: The pilot study will be conducted in two neonatal intensive care units (NICUs). A sample of 24 mother-infant dyads born between 26 and 316/7 gestational age will be randomized into an experimental or control group. Fifty nurses will be recruited. The NeuroN-QI consists of four 2-hour skin-to-skin contact sessions/week with a 15-minute auditory stimulation by mothers with controlled ambient levels of light and noise. A 1-hour quiet period will follow where infants will rest in their incubator/crib with their mother's milk for olfactory stimulation and where the light and noise control will be continued. In the control group, mother-infant dyads will do four skin-to-skin contacts per week and receive standard care. Acceptability and feasibility of the NeuroN-QI in addition to maternal stress and anxiety will be measured through questionnaires, while infants' neurodevelopment will be assessed with Assessment of Preterm Infant Behaviour and General Movement Assessment. CONCLUSIONS: This pilot trial will address knowledge gaps and generate evidence in neonatal care by evaluating the feasibility and acceptability of a multi-component developmental care intervention. IMPACT: This project is an innovative step towards optimizing the neurodevelopmental trajectory of infants in NICUs and consequently promoting their long-term health outcomes. TRIAL REGISTRATION: NCT04593095.

Exploring the experiences of parent caregivers of children with chronic medical complexity during pediatric intensive care unit hospitalization: an interpretive descriptive study.

BACKGROUND: Children with medical complexity (CMC) account for an increasing proportion of pediatric intensive care unit (PICU) admissions across North America. Their risk of unscheduled PICU admission is threefold compared to healthy children, and they are at higher risk of prolonged length of stay and PICU mortality. As a result of their sophisticated home care needs, parents typically develop significant expertise in managing their children's symptoms and tending to their complex care needs at home. This can present unique challenges in the PICU, where staff may not take parents' advanced expertise into account when caring for CMC. The study aimed to explore the experiences of parents of CMC during PICU admission. METHODS: This interpretive descriptive study was performed in the PICU of one Canadian, quaternary care pediatric hospital. Semi-structured interviews were conducted with 17 parent caregivers of 14 CMC admitted over a 1-year period. RESULTS: Parents of CMC expected to continue providing expert care during PICU admission, but felt their knowledge and expertise were not always recognized by staff. They emphasized the importance of parent-staff partnerships. Four themes were identified: (1) "We know our child best;" (2) When expertise collides; (3) Negotiating caregiving boundaries; and (4) The importance of being known. Results support the need for a PICU caregiving approach for CMC that recognizes parent expertise. CONCLUSIONS: Partnership between staff and parents is essential, particularly in the case of CMC, whose parents are themselves skilled caregivers. In addition to enhanced partnerships with health care professionals, needs expressed by parents of CMC during PICU hospitalization included improved communication with staff, and more attention to continuity of care in the PICU and across hospital services. Parent-staff partnerships must be informed by ongoing communication and negotiation of caregiving roles throughout the course of the child's PICU hospitalization.

Perceptions of Methotrexate Intolerance and Its Impact on Daily Life in School-Age Children with Juvenile Idiopathic Arthritis.

PURPOSE: Methotrexate (MTX) is a disease modifying anti-rheumatic drug commonly used to treat children with Juvenile Idiopathic Arthritis (JIA). Unfortunately, half of children taking MTX will experience MTX intolerance, which includes distressing gastrointestinal and behavioural symptoms associated with weekly MTX treatment. This qualitative study aimed to explore the perceptions of school-age children with JIA experiencing MTX intolerance, how they managed MTX intolerance, and how it impacted their daily life. DESIGN AND METHODS: An interpretive descriptive design was used. Twelve children participated in one individual 30-minute semi-structured interview using a storyboard technique to elicit their perceptions through storytelling. Interview transcripts and observational data collected during the interviews were analyzed using inductive content analysis. RESULTS: Children described MTX intolerance as extremely challenging. Three themes emerged from the data: (1) "No kid likes taking MTX". This theme was comprised of two subthemes related to: (a) associative MTX intolerance; namely, "Talking about it sometimes makes me feel sick"; and (b) anticipatory MTX intolerance, "Before [I take it], I have a little stomach ache". Other themes included: (2) The importance of strategies and routines; and (3) Working hard to live with MTX intolerance. CONCLUSIONS: This study sheds new light on MTX intolerance as perceived by school-aged children with JIA. Results highlight the importance of providing families and healthcare professionals with the necessary information for early recognition of MTX intolerance and optimizing care through the development of early intervention strategies. PRACTICE IMPLICATIONS: Study findings highlight the importance of prioritizing early identification and prevention of MTX intolerance.

Conceptualizing Post Intensive Care Syndrome in Children-The PICS-p Framework.

CONTEXT: Over the past several decades, advances in pediatric critical care have saved many lives. As such, contemporary care has broadened its focus to also include minimizing morbidity. Post Intensive Care Syndrome, also known as "PICS," is a group of cognitive, physical, and mental health impairments that commonly occur in patients after ICU discharge. Post Intensive Care Syndrome has been well-conceptualized in the adult population but not in children. OBJECTIVE: To develop a conceptual framework describing Post Intensive Care Syndrome in pediatrics that includes aspects of the experience that are unique to children and their families. DATA SYNTHESIS: The Post Intensive Care Syndrome in pediatrics (PICS-p) framework highlights the importance of baseline status, organ system maturation, psychosocial development, the interdependence of family, and trajectories of health recovery that can potentially impact a child's life for decades. CONCLUSION: Post Intensive Care Syndrome in pediatrics will help illuminate the phenomena of surviving childhood critical illness and guide outcomes measurement in the field. Empirical studies are now required to validate and refine this framework, and to subsequently develop a set of core outcomes for this population. With explication of Post Intensive Care Syndrome in pediatrics, the discipline of pediatric critical care will then be in a stronger position to map out recovery after pediatric critical illness and to evaluate interventions designed to mitigate risk for poor outcomes with the goal of optimizing child and family health.

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.

Parental perceptions of transition from intensive care following a child's cardiac surgery.

BACKGROUND: Children with congenital heart disease (CHD) who undergo cardiac surgery are hospitalized in a paediatric intensive care unit (PICU) prior to being transferred to a surgical ward. This is a challenging transition for parents of children with CHD who experience high levels of stress related to their child's illness. AIM: To explore parents' perceptions of the transition from the PICU to the surgical ward following their child's cardiac surgery. STUDY DESIGN: A qualitative descriptive design using semi-structured interviews was used to explore parents' perceptions of the transfer experience. METHODS: All parents of children with CHD who met inclusion criteria were approached to participate. Parents were recruited until data saturation was achieved (n = 9). Interviews were audiotaped and transcribed verbatim. Transcripts were coded and thematically analysed concurrently with data collection. RESULTS: Parents described having mixed feelings of happiness and uncertainty upon learning that their child would be transferred to the surgical ward (theme 1). Parents' uncertainty prompted a need to rally for the upcoming transfer, a process in which the nurse was perceived to play an important role (theme 2). Once transferred to the surgical ward, parents described having to come to terms with a new care experience in which they encountered new role expectations and a challenging new environment (theme 3). CONCLUSION: Emotional reactions to transfer were generally consistent with the literature, although parents in our study did not describe feelings of isolation related to transition as reported elsewhere. We also identified the timing of transfer as a potential source of stress for parents. Parents identified key nursing interventions that helped them to prepare for transfer and come to terms with challenges in their new environment. RELEVANCE TO PRACTICE: A deeper understanding of parents' transfer experience will facilitate the development of effective nursing interventions to support parents at this time.

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.

Design and rationale of the Post-Intensive Care Syndrome - paediatrics (PICS-p) Longitudinal Cohort Study.

INTRODUCTION: As paediatric intensive care unit (PICU) mortality declines, there is growing recognition of the morbidity experienced by children surviving critical illness and their families. A comprehensive understanding of the adverse physical, cognitive, emotional and social sequelae common to PICU survivors is limited, however, and the trajectory of recovery and risk factors for morbidity remain unknown. METHODS AND ANALYSIS: The Post-Intensive Care Syndrome - paediatrics Longitudinal Cohort Study will evaluate child and family outcomes over 2 years following PICU discharge and identify child and clinical factors associated with impaired outcomes. We will enrol 750 children from 30 US PICUs during their first PICU hospitalisation, including 500 case participants experiencing ≥3 days of intensive care that include critical care therapies (eg, mechanical ventilation, vasoactive infusions) and 250 age-matched, sex-matched and medical complexity-matched control participants experiencing a single night in the PICU with no intensive care therapies. Children, parents and siblings will complete surveys about health-related quality of life, physical function, cognitive status, emotional health and peer and family relationships at multiple time points from baseline recall through 2 years post-PICU discharge. We will compare outcomes and recovery trajectories of case participants to control participants, identify risk factors associated with poor outcomes and determine the emotional and social health consequences of paediatric critical illness on parents and siblings. ETHICS AND DISSEMINATION: This study has received ethical approval from the University of Pennsylvania Institutional Review Board (protocol #843844). Our overall objective is to characterise the ongoing impact of paediatric critical illness to guide development of interventions that optimise outcomes among children surviving critical illness and their families. Findings will be presented at key disciplinary meetings and in peer-reviewed publications at fixed data points. Published manuscripts will be added to our public study website to ensure findings are available to families, clinicians and researchers. TRIALS REGISTRATION NUMBER: NCT04967365.

Maternal touch and talk for invasive procedures in infants and toddlers in the pediatric intensive care unit.

The aim of this single-blind, randomized, crossover trial was to test the effect of Touch & Talk (T&T) for infants and toddlers less than 36 months of age (N = 65) in the pediatric intensive care unit on their physiological stability and recovery to an invasive procedure. In the T&T condition, mothers touched, sang, or told stories or rhymes to their child during an invasive procedure. In the control condition, the mothers did not have contact with their child. Physiological measures included heart rate, heart rate variability, and oxygen saturation range during the procedure and change from baseline. Time from the end of the procedure until the heart rate returned to baseline levels gave the recovery time. Analysis was conducted using repeated-measures analysis of covariance. There were no significant differences on any of the physiological parameters by condition during the procedure. However, when controlling for severity of illness, recovery was faster with mothers.

Canadian Developmental Follow-up Practices in Children With Congenital Heart Defects: A National Environmental Scan.

Background: Developmental follow-up is central to the timely identification of delays in at-risk children. Throughout Canada, data are currently lacking on the follow-up of children with congenital heart disease (CHD) after open-heart surgery. The objective of this study was to describe current Canadian developmental follow-up practices and to explore barriers to optimal follow-up. Methods: A cross-sectional study was implemented with health professionals involved with the developmental follow-up of children with CHD in the 8 specialized hospitals that perform pediatric open-heart surgery in Canada. A questionnaire collected descriptive information about the setting and current follow-up practices. In addition, an interview was conducted to explore what would be considered optimal developmental follow-up in Canada and identify potential barriers. Results: Four of the 8 tertiary care centres had a systematic developmental follow-up program that included screening and formal evaluation. These programs were only accessible to a subset of children with CHD identified to be at higher risk. Participants described current practices as suboptimal and aimed to develop a more systematic developmental follow-up program or expand an existing one. Participants emphasized the lack of human resources, financial supports, and limited dedicated time as major barriers to offering optimal follow-up care. Conclusions: Current follow-up practices in Canada are considered suboptimal by health care specialists involved in treating children with CHD. These practices may fail to promptly identify children and adolescents with CHD who have developmental challenges. It is essential that we develop national recommendations to optimize the developmental follow-up practices in Canada for this high-risk population.

Contexte: Le suivi développemental est essentiel afin d'identifier rapidement les retards chez les enfants à risque. Il n'existe actuellement pas de données sur le suivi des enfants atteints d'une cardiopathie congénitale ayant nécessité une intervention chirurgicale à cœur ouvert. L'objectif de cette étude consistait à décrire les pratiques actuelles de suivi développemental et à explorer les obstacles à un suivi optimal au Canada. Méthodologie: Une étude transversale a été menée auprès de professionnels de la santé assurant le suivi du développement d'enfants atteints de cardiopathie congénitale dans huit hôpitaux spécialisés qui pratiquent des chirurgies à cœur ouvert au Canada. Un questionnaire a permis de recueillir des renseignements descriptifs sur les établissements et les pratiques actuelles de suivi. De plus, une entrevue a été menée pour explorer ce qui pourrait être considéré comme un suivi optimal du développement au Canada et cerner les obstacles actuels. Résultats: Quatre des huit centres de soins tertiaires disposaient d'un programme de suivi systématique du développement qui comprenait un dépistage et une évaluation formelle. Ces programmes n'étaient accessibles qu'à un sous-groupe d'enfants atteints d'une cardiopathie congénitale, identifiés comme étant à risque élevé de retard de développement. Les participants ont décrit les pratiques actuelles comme sous-optimales et souhaitaient mettre en place un programme de suivi développemental plus systématique ou à élargir un programme existant. Les participants ont souligné le manque de ressources humaines et financières ainsi que le peu de temps qui peut être consacré au suivi comme étant les principaux obstacles pour offrir un suivi optimal. Conclusions: Les professionnels de la santé œuvrant dans le traitement des enfants atteints de cardiopathie congénitale considèrent que les pratiques actuelles de suivi au Canada sont sous-optimales. Ces pratiques peuvent ne pas permettre d'identifier rapidement les enfants et les adolescents atteints de cardiopathie congénitale qui présentent des retards de développement. Il est essentiel que nous élaborions des recommandations nationales pour optimiser les pratiques de suivi développemental au Canada pour cette population à risque élevé.

Measuring psychological outcomes following pediatric intensive care unit hospitalization: psychometric analysis of the Children's Critical Illness Impact Scale.

OBJECTIVE: Critically ill children are at risk for psychological sequelae following pediatric intensive care unit hospitalization. This article reports on the psychometric testing of the first self-report measure of psychological distress for 6-12-yr-old children post-pediatric intensive care unit hospitalization: The Children's Critical Illness Impact Scale. This 23-item scale takes approximately 15 mins for children to complete. DESIGN: Psychometric testing based on Classic Test Theory and guidelines for health measurement scale development. SETTING: The pediatric intensive care units of four Canadian pediatric hospitals and the ear, nose, and throat clinic of one participating hospital. PATIENTS: A total of 172 children (pediatric intensive care unit group, n = 84; ear, nose, and throat group, n = 88) aged 6-12 yrs and their parents. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We assessed the factor structure, internal consistency, and test-retest reliability of the Children's Critical Illness Impact Scale and conducted contrasted group comparisons and convergent and concurrent validation testing. Fit indices and internal consistency were best for a three-factor solution, suggesting three dimensions of psychological distress: 1) worries about getting sick again, 2) feeling things have changed, and 3) feeling anxious and fearful about hospitalization. As expected, Children's Critical Illness Impact Scale scores were positively correlated with child anxiety and medical fear scores. The ear, nose, and throat group scores were higher than expected. Higher Children's Critical Illness Impact Scale scores in older children may reflect a better understanding of the situation and its complexity and meaning, and younger children's tendency to provide more positive self-evaluation. CONCLUSIONS: The Children's Critical Illness Impact Scale is a promising new self-report measure of psychological distress with demonstrated reliability and validation testing in 6-12-yr-old children post-pediatric intensive care unit hospitalization. This new measure has potential to advance the evidence base for pediatric intensive care unit and post-pediatric intensive care unit health promotion interventions.

Testing an empowerment intervention to help parents make homes smoke-free: a randomized controlled trial.

The objective of this randomized controlled trial was to test if parents' participation in an intervention based on an empowerment ideology and participatory experiences decreased the number of cigarettes smoked in homes. Sixty families were randomized to the intervention (n = 30) or control (n = 30) group. The intervention included three weekly group sessions followed by three weekly follow-up telephone calls over six consecutive weeks. During group sessions, parents shared experiences about environmental tobacco smoke, identified personal strengths and resources, and developed action plans. Data were collected in interviewer-administered questionnaires at baseline and 6 months follow-up. Ninety-three percent of the sample consisted of mothers, 77% of whom smoked during pregnancy. Forty-two percent of the total sample reported a household income of <$15,000. The median number of cigarettes smoked in the home daily decreased from 18 to 4 in the total sample however no statistically significant difference was detected between groups at 6 months follow-up. Participation in the study, independent of group, may have resulted in parents decreasing the number of cigarettes smoked in the home. Valuable lessons were learned about recruiting and working with this group of parents, all of whom faced the challenges of tobacco and almost half of whom lived in poverty.

Cerebral near-infrared spectroscopy as a measure of nociceptive evoked activity in critically ill infants.

Signs of pain may be subtle or absent in a critically ill infant. The complex nature of pain may further obscure its identification and measurement. Because the use of monitoring and neuroimaging techniques has become more common in pain research, an understanding of these specialized technologies is important. Near-infrared spectroscopy (NIRS) is a noninvasive technique for monitoring tissue hemodynamics and oxygenation. There are indications that NIRS is capable of detecting the cerebral hemodynamic changes associated with sensory stimuli, including pain, in infants. These developments suggest that NIRS may play an important role in research focusing on pain perception in critically ill infants. The present review briefly describes the cortical responses to noxious stimuli, which parallel cerebral hemodynamic responses to various stimuli. This is followed by an overview of NIRS technology including a summary of the literature on functional studies that have used NIRS in infants. Current NIRS techniques have well-recognized limitations that must be considered carefully during the measurement and interpretation of the signals. Nonetheless, until more advanced NIRS techniques emerge, the current devices have strengths that should be exploited.

Include them and they will tell you: learnings from a participatory process with youth.

Encouraging youth voice, visibility, and active participation in adolescent-related research is strongly advocated in the literature. In this article, we describe how participatory approaches informed by arts-based methods (e.g., reflective writing, dramatization) were used with adolescents to enhance the research process in an exploratory study designed to develop and evaluate prevention resources for sexual risk-taking behaviors.Youth aged 15 to 17 years participated in iterative focus groups conducted over a 1-year period in school settings in Prince Edward Island, Canada. Descriptions of our experiences, strategies, and insights provide evidence for guiding practice to optimize adolescent participation in research.

'Do it for the kids': barriers and facilitators to smoke-free homes and vehicles.

Despite abundant evidence about the adverse effects of secondhand smoke exposure on children's health, few reports describe barriers and facilitators encountered by parents in making their homes and vehicles smoke-free. This article describes perceptions of barriers and facilitators to making homes and vehicles smoke-free among 36 parents with a child five years of age or younger. Qualitative data were collected in interviews with parents in the context of a randomized controlled trial that tested an intervention to empower parents to make their homes and vehicles smoke-free. Themes that emerged in the analysis were congruent with an ecological conceptualization of health. The greatest barriers were intrapersonal factors, and nicotine addiction was the intrapersonal barrier identified most frequently. The most frequently reported facilitators were intrapersonal factors, such as quitting smoking. Parents reported not seeking advice from health care providers. The transition process to make homes and vehicles smoke-free is complex and individualistic; nurses may need to tailor strategies to take the specific contexts of each individual into account.

Family Members' Perceptions of Their Psychological Responses One Year Following Pediatric Intensive Care Unit (PICU) Hospitalization: Qualitative Findings From the Caring Intensively Study.

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.

Motor Impairment in Children With Congenital Heart Defects: A Systematic Review.

CONTEXT: With improvements in survival rates in newborns with congenital heart defects (CHDs), focus has now shifted toward enhancing neurodevelopmental outcomes across their life span. OBJECTIVE: To systematically review the prevalence and extent of motor difficulties in infants, children, and adolescents with CHD requiring open-heart surgery. DATA SOURCES: Data sources included Embase, Medline and the Cumulative Index to Nursing and Allied Health Literature. STUDY SELECTION: Original studies published between 1997 and 2019 examining gross and/or fine motor skills in children born with a CHD requiring open-heart surgery were selected. DATA EXTRACTION: The prevalence of motor impairments and mean scores on standardized motor assessments were extracted. Findings were grouped in 5 categories on the basis of the age of the children. RESULTS: Forty-six original studies were included in this systematic review. The prevalence of mild to severe motor impairments (scores <-1 SD below normative data or controls) across childhood ranged from 12.3% to 68.6%, and prevalence ranged from 0% to 60.0% for severe motor impairments (<-2 SDs). Although our results suggest that the overall prevalence of motor impairments <-1 SD remains rather constant across childhood and adolescence, severe motor impairments (<-2 SDs) appear to be more prevalent in younger children. LIMITATIONS: Variability in sampling and methodology between the reviewed studies is the most important limitation of this review. CONCLUSIONS: The results of this review highlight that infants with CHD have an increased risk of motor impairments across infancy, childhood, and adolescence. These findings stress the importance of systematic screening or evaluation of motor skills across childhood and adolescence in children with CHD.