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.

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.

Clinical Reasoning Behind Antibiotic Use in PICUs: A Qualitative Study.

OBJECTIVES: To describe the reasoning processes used by pediatric intensivists to make antibiotic-related decisions. DESIGN: Grounded theory qualitative study. SETTING: Three Canadian university-affiliated tertiary medical, surgical, and cardiac PICUs. PATIENTS: Twenty-one PICU physicians. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: We conducted field observation during morning rounds followed by semistructured interviews with participants to examine the clinical reasoning behind antibiotic-related decisions (starting/stopping antibiotics, or treatment duration) made for patients with a suspected/proven bacterial infection. We used a grounded theory approach for data collection and analysis. Thematic saturation was reached after 21 interviews. Of the 21 participants, 10 (48%) were female, 15 (71%) were PICU attending staff, and 10 (48%) had greater than 10 years in clinical practice. Initial clinical reasoning involves using an analytical approach to determine the likelihood of bacterial infection. In case of uncertainty, an assessment of patient safety is performed, which partly overlaps with the use of intuitive clinical reasoning. Finally, if uncertainty remains, physicians tend to consult infectious diseases experts. Factors that override this clinical reasoning process include disease severity, pressure from consultants, and the tendency to continue antibiotic treatment initiated by colleagues. CONCLUSIONS: Antibiotic-related decisions for critically ill children are complex, and pediatric intensivists use several clinical reasoning strategies to decrease the uncertainty around the bacterial etiology of infections. However, disease severity and patient safety concerns may overrule decisions based on clinical evidence and lead to antibiotic use. Several cognitive biases were identified in the clinical reasoning processes.

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.

TOwards enhancing Paediatric Intensive Care for Children with Medical Complexity (ToPIC CMC): a mixed-methods study protocol using Experience-based Co-design.

INTRODUCTION: Advances in medical technology and postoperative care have led to increased survival of children with medical complexity (CMC). Parents of CMC develop substantial caregiver expertise and familiarity with paediatric intensive care unit (PICU) staff and treatment procedures which may give rise to tensions regarding respective roles, caretaking preferences, treatment goals and expected outcomes. A therapeutic alliance built through strong partnerships constitutes the foundation of patient and family-centred care (PFCC), contributing to improvements in experiences and outcomes. Yet acute care settings continue to struggle with integrating PFCC into practice. This study aims to enhance PFCC for CMC in the PICU using an innovative approach to integrated knowledge translation. METHODS: A mixed-method concurrent triangulation design will be used to develop, implement and evaluate PFCC practice changes for CMC in the PICU. Qualitative data will be collected using an Experience-based Co-design (EBCD) approach. Parents, CMC and staff will reflect on their PICU care experiences (stages 1 and 2), identify priorities for improvement (stage 3), devise strategies to implement changes (stage 4), evaluate practice changes and study process, and disseminate findings (stage 5). The quantitative arm will consist of a prepractice and postpractice change evaluation, compared with a control site. Analysis of qualitative and quantitative data will provide insights regarding the impact of PICU practice changes on PFCC. ETHICS AND DISSEMINATION: The McGill University Health Centre Research Ethics Board (Ref. #2019-5021) and the Hospital for Sick Children Research Ethics Board (Ref. #1000063801) approved the study. Knowledge users and researchers will be engaged as partners throughout the study as per our participatory approach. Knowledge products will include a short film featuring themes and video/audio clips from the interviews, recommendations for improvements in care, and presentations for healthcare leaders and clinical teams, in addition to traditional academic outputs such as conference presentations and publications.

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.

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.

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.

Study protocol for a multicentre longitudinal mixed methods study to explore the Outcomes of ChildrEn and fAmilies in the first year after paediatric Intensive Care: the OCEANIC study.

INTRODUCTION: Annually in the UK, 20 000 children become very ill or injured and need specialist care within a paediatric intensive care unit (PICU). Most children survive. However, some children and their families may experience problems after they have left the PICU including physical, functional and/or emotional problems. It is unknown which children and families experience such problems, when these occur or what causes them. The aim of this mixed-method longitudinal cohort study is to understand the physical, functional, emotional and social impact of children surviving PICU (aged: 1 month-17 years), their parents and siblings, during the first year after a PICU admission. METHODS AND ANALYSIS: A quantitative study involving 300 child survivors of PICU; 300 parents; and 150-300 siblings will collect data (using self-completion questionnaires) at baseline, PICU discharge, 1, 3, 6 and 12 months post-PICU discharge. Questionnaires will comprise validated and reliable instruments. Demographic data, PICU admission and treatment data, health-related quality of life, functional status, strengths and difficulties behaviour and post-traumatic stress symptoms will be collected from the child. Parent and sibling data will be collected on the impact of paediatric health conditions on the family's functioning capabilities, levels of anxiety and social impact of the child's PICU admission. Data will be analysed using descriptive and inferential statistics. Concurrently, an embedded qualitative study involving semistructured interviews with 24 enrolled families at 3 months and 9 months post-PICU discharge will be undertaken. Framework analysis will be used to analyse the qualitative data. ETHICS AND DISSEMINATION: The study has received ethical approval from the National Health Services Research Ethics Committee (Ref: 19/WM/0290) and full governance clearance. This will be the first UK study to comprehensively investigate physical, functional, emotional and social consequences of PICU survival in the first-year postdischarge.Clinical Trials Registration Number: ISRCTN28072812 [Pre-results].

Promoting medication adherence from the perspective of adolescent and young adult kidney transplant recipients, parents, and health care professionals: A TAKE-IT TOO study.

Medication non-adherence is an important factor limiting allograft survival after kidney transplantation in AYA. Some interventions, including the TAKE-IT, showed some success in promoting adherence but the potential for scalability and use in routine clinical practice is limited. We applied user-centered design to gather the perspectives of recipients, parents, and health professionals concerning their needs, challenges, and potential intervention strategies to design an optimal, multi-component medication adherence intervention. The qualitative study was conducted at four Canadian and three American kidney transplant programs. Separate focus groups for recipients, parents, and health professionals were convened to explore these stakeholders' perspectives. Directed content analysis was employed to identify themes that were shared vs distinct across stakeholders. All stakeholder groups reported challenges related to taking medications on time in the midst of their busy schedules and the demands of transitioning toward independence during adolescence. The stakeholders also made suggestions for the multi-component behavioral intervention, including an expanded electronic pillbox and companion website, education materials, and customized digitized features to support shared responsibility and communication among recipients, parents, and health professionals. Several suggestions regarding the functionality and features of the potential intervention reported in this early stage will be explored in more depth as the iterative process unfolds. Our approach to actively involve all stakeholders in the process increases the likelihood of designing an adherence intervention that is truly user-informed and fit for the clinical setting.

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.

Psychosocial Outcomes of Children and Adolescents With Severe Congenital Heart Defect: A Systematic Review and Meta-Analysis.

OBJECTIVE: Over the past 20 years, there has been a growing interest in the psychosocial outcomes of children and adolescents born with a congenital heart defect (CHD). This systematic review and meta-analysis aims to appraise and synthesize current literature on the psychosocial outcomes of children and adolescents with severe CHD. METHODS: A search of studies examining psychosocial outcomes in children and adolescents with severe CHD was performed. Meta-analyses were used to calculate the prevalence of psychosocial impairments and the standardized mean differences between cases and controls. Results that were not included in the meta-analysis were collated using descriptive statistics. RESULTS: A total of 16 studies were included in this review, and results were summarized according to three domains: behavior, social cognition, and self-esteem. Results from a meta-analysis identified that 25% of children and adolescents with CHD presented behavioral problems. Children and adolescents with CHD had more problematic behavior than healthy peers (standardized mean difference; g = 0.71). Young people with CHD had significantly more difficulties inferring on the mental states of others (standardized mean difference; g = 0.72). In contrast, identifying the emotions of others and self-esteem was not statistically different from healthy controls. CONCLUSION: This review and meta-analysis provides evidence to support the presence of psychosocial difficulties in children and adolescents born with a severe CHD giving grounds for the systematic assessment of behavior and social cognition during their clinical follow-up.

Usability Testing of an Interactive Communication Tool to Help Children Express Their Cancer Symptoms.

OBJECTIVE: Sisom is an interactive computer software program that allows children to rate the severity of their cancer symptoms. The study objectives were to describe the usability of Sisom in terms of ease of use, usefulness, and aesthetics and to offer suggestions for improvement. METHOD: A multisite, descriptive study was conducted to describe the usability of Sisom. A purposive sample of children, ages 6 to 12 years, being treated for cancer was recruited. English- and French-speaking children completed the eight tasks in Sisom recorded using Morae software and provided input via an audiotaped interview. Data were downloaded, transcribed verbatim, and analyzed descriptively. RESULTS: Thirty-four children with varying cancers participated. The majority of children liked Sisom and found Sisom easy to use, found it to be helpful in expressing their symptoms, and were satisfied with the aesthetics. Some children provided suggestions for improvement to optimize Sisom use in Canada. CONCLUSIONS: Children's positive responses and desire to use Sisom again suggest that future research should be directed toward implementing and evaluating its effectiveness in a variety of settings.

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.

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.

Nurses' perceptions of caring for parents of children with chronic medical complexity in the pediatric intensive care unit.

OBJECTIVES: The aim of this study was to explore nurses' perceptions of caring for parents of children with medical complexity [CMC] in the pediatric intensive care unit [PICU]. RESEARCH METHODOLOGY: An interpretive descriptive design was used to explore nurses' perceptions of caring for parents of CMC in the PICU. Semi-structured interviews were conducted with ten nurses. Interview data were collected and analyzed using qualitative inductive content analysis. FINDINGS: Nurses revealed that their experiences of caring for parents of CMC evolved over time as they learned to tailor a caregiving partnership based on trust. Although various circumstances could challenge this partnership, nurses strove to maintain and nurture it through self-reflection and optimal communication. Three themes were identified in the data that captured PICU nurses' perceptions: (i) "Thrown to the wolves": Adjusting to a new caregiving role; (ii) "Getting to know each other": Merging caregiving roles; (iii) "Keeping connected": Working to preserve the partnership. CONCLUSIONS: Findings shed new light on the importance of a trusting nurse-parent partnership in caring for parents of CMC in the PICU. Results will be used to develop strategies to enhance this partnership, with the goal of supporting parents and staff in their caregiving roles.