Acceptability and Feasibility of Text Message Interface to Assess Parents' Real-time PICU Experiences.

INTRODUCTION: Parents of children in the pediatric intensive care unit (PICU) experience substantial stress; a parent's perception of their child's illness severity, more than objective measures, predicts psychological outcomes. No tools exist to assess parents' real-time experiences. This pilot study evaluated the feasibility and acceptability of a text-based tool to measure parental experience. METHODS: Inclusion criteria included PICU stay >48 h, physician approval, smartphone access, and English-speaking caregiver. Eligible parents received a text-based baseline survey and surveys every other day while hospitalized regarding their mood/experiences and optional open-ended questions regarding stressors. They received post-discharge follow-up surveys at 1 week and 1, 3, and 6 months. Follow-up surveys assessed mood and symptoms of depression, anxiety, and post-traumatic stress. Interviews and surveys about the interface were conducted 1 week and 3 months following discharge. Feasibility was assessed by descriptive statistics (eg, response rates), and acceptability was assessed by descriptive statistics (survey results) and thematic analyses of interviews. RESULTS: Of 20 enrolled participants, the first 5 were excluded due to technical issues. Of the 15 included, results demonstrated feasibility and acceptability. Most participants (86%) completed all surveys during the PICU stay and continued to complete surveys at a high rate: 79%-94% 3 months post-discharge. All participants agreed that the system was easy to use and were satisfied with the system at discharge, and 91% remained satisfied 3 months post-discharge. Additionally, 76% reported comfort, and 69% reported benefit. From the interviews, participants lauded the system's convenience and applicability of content. Some proposed changes to improve ergonomics. Many suggested this interface could help teams better support families. CONCLUSIONS: A text-based interface for measuring experience in the PICU is feasible and acceptable to parents. Further research can explore how this could identify parents most at risk of adverse psychological sequelae and lead to earlier supportive interventions.

The impact of the COVID-19 pandemic on families of children with medical complexity: A qualitative study of caregivers' experiences.

BACKGROUND: Families of children with medical complexity (CMC) have been negatively affected by the COVID-19 pandemic, experiencing challenges such as decreased access to services, increased financial hardship and increased isolation. However, there are few qualitative studies which explore parental experiences. The aim of the present study was to describe the impact of the COVID-19 pandemic on families of CMC. METHODS: Caregivers of CMC were recruited from a large hospital in the Midwestern United States. They completed a semistructured qualitative interview assessing the impact of COVID-19 on their child's care, which was analysed using interpretive phenomenological analysis. RESULTS: Twenty caregivers who were predominantly White, married and female participated. Emergent themes included the importance of protecting their child's health to ensure their physical safety, greater social isolation and missed medical services related to concerns about exposure, clinic closures and/or other logistical changes. Participants noted that the convenience of telehealth was a positive outcome of COVID-19 that facilitated care while reducing time and resource challenges. CONCLUSIONS: This study highlights the importance of protecting the health of CMC through continued safe access to in-person or telehealth services. It is important to prioritise emotional support services for families of CMC as they have experienced increased stress and social isolation during and after the COVID-19 pandemic. This topic should be explored among diverse families with CMC across multiple healthcare systems.

Decision-Making for Children with Medical Complexity: The Role of the Primary Care Pediatrician.

Families of children with medical complexity (CMC) face many types of health-related decisions. These decisions vary in magnitude of consequences, degree of risk, time scale, degree of tradeoffs, degree of uncertainty, degree of linkage with other decisions, and reversibility. There are many influences on decision-making, including evidence, hopes, and values. Primary care pediatricians are in a unique position to assist families of CMC with decision-making. Pediatric clinicians have an opportunity to establish a trusting relationship with a family over time and to understand the family's values, beliefs, and preferences during periods of relative health and stability. This allows primary care pediatricians to support families in decision-making by helping to clarify their values and goals and apply those values to the decision at hand. [Pediatr Ann. 2020;49(11):e473-e477.].

Caring for Maya: A Family, Pediatrician, and Complex Care Partnership.

Coordinating care to meet the robust needs of children with medical complexity and their families is challenging, especially in the setting of a busy primary care practice. This article describes the experience of one family and pediatrician and highlights specific factors, such as a focus on building relationships, meaningful and structured information-sharing, and partnership with a complex care program, that can positively affect care. [Pediatr Ann. 2020;49(11):e486-e490.].

What do family caregivers do when managing medications for their children with medical complexity?

Using a work domain analysis and complementary thematic analysis, this paper aims to describe medication management work, its constraints, and complexities from the perspectives of family caregivers of children with medical complexity-a medically fragile segment of the pediatric population often dependent on multiple and complex medication regimens for survival and optimal functioning. Analyses were informed by data generated through observations of 12 care coordination clinic visits within a pediatric complex care program, semi-structured interviews of 11 family caregivers, and reviews of program documents. Our results show that family caregivers: (1) formulate medication management goals, identify values and criteria to judge goals but these may not necessarily be acknowledged and explicitly supported by system resources and healthcare professionals (2) are engaged in a range of complex medication management tasks that are both physically and emotionally demanding without the support of well-designed tools and resources to enhance their work.

Understanding mothers' perception of child's illness: Adapting the CONNECT Instrument for pediatrics.

AIMS AND OBJECTIVES: To adapt the CONNECT Instrument for use in the paediatric population, to assess validity of this instrument after its adaptation and to assess concordance between mothers' perception of their child's illness and providers' understanding of mothers' perceptions. BACKGROUND: The CONNECT Instrument (Patient Education and Counseling, 73, 2008, 232-239) was validated in an adult outpatient population to characterise both patients' perspectives and physicians' understanding of their patients' perspectives for several dimensions of the illness experience. However, this did not include the paediatric population or advanced practice providers. DESIGN: A two-part prospective, cross-sectional, observational study to assess the validity of CONNECT for Pediatrics and to assess perception of illness. METHODS: The CONNECT Instrument (Patient Version) was adapted from its original form and modified to CONNECT for Pediatrics to facilitate use in the inpatient paediatric population. Eighty-five participants were enrolled including mothers, advanced practice providers and physicians from 2013-2014 during a child's scheduled admission to a paediatric epilepsy monitoring unit. Principal components analysis and inter-item reliability were analysed, and differences in the six mean domain scores were assessed using repeated measures analysis of variance (RM-ANOVA). Reporting of this research adheres to the STROBE guidelines (See Appendix S1). RESULTS: Our analysis indicated that the modifications made provided a relatively valid and reliable instrument. There were overall statistically significant differences between the mother and physician groups, specifically in the domains of meaning and preference for partnership. CONCLUSIONS: Paediatric advanced practice providers and physicians do have an understanding of mothers' perception of illness. RELEVANCE TO CLINICAL PRACTICE: The ability of physicians and advanced practice providers to understand mothers' perceptions of illness is increasingly important in a changing healthcare environment. CONNECT for Pediatrics facilitates the identification of mothers' perception of their child's illness and provides the opportunity for paediatric advanced practice providers and physicians to understand parents' perception of illness.

Predictors of need for mechanical ventilation at discharge after tracheostomy in the PICU.

BACKGROUND: The objective of this study was to determine factors predictive of need for mechanical ventilation (MV) upon discharge from the pediatric intensive care unit (PICU) among patients who receive a tracheostomy during their stay. METHODS: This was a retrospective cohort study using the Virtual PICU Systems (VPS) database. Patients <18 years old admitted between 2009-2011 who required MV for at least 3 days and received a tracheostomy during their PICU stay were included. RESULTS: A total of 680 pediatric patients from 74 PICUs were included, of whom 347 (51%) remained on MV at the time of PICU discharge. Neonates (30/38, 79%) and infants (129/203, 64%) required MV at PICU discharge after tracheostomy more often than adolescents (66/141, 47%) and children (122/298, 41%). Time on MV pre-tracheostomy was longer among those who required MV at discharge (median 18.3 vs. 13.8 days, P < 0.0001); however, number of failed extubations was similar (median 1 for both groups, P = 0.97). On mixed-effects multivariable regression analysis, the age categories of neonate (OR 2.9, 95%CI 1.1-7.6, P = 0.03), and infant (OR 1.7, 95%CI 1.1-2.8, P = 0.03), and ventilator days prior to tracheostomy (OR 1.01, 95%CI 1.0-1.02, P = 0.01) were significantly associated with increased odds of MV upon PICU discharge, while being a trauma admission was associated with decreased odds (OR 0.45, 95%CI 0.28-0.73, P = 0.001). CONCLUSIONS: Younger patients and those with prolonged courses of MV prior to tracheostomy are more likely to continue to need MV upon PICU discharge.

Promoting Staff Resilience in the Pediatric Intensive Care Unit.

BACKGROUND: Health care professionals experience workplace stress, which may lead to impaired physical and mental health, job turnover, and burnout. Resilience allows people to handle stress positively. Little research is aimed at finding interventions to improve resilience in health care professionals. OBJECTIVE: To describe the availability, use, and helpfulness of resilience-promoting resources and identify an intervention to implement across multiple pediatric intensive care units. METHODS: A descriptive study collecting data on availability, utilization, and impact of resilience resources from leadership teams and individual staff members in pediatric intensive care units, along with resilience scores and teamwork climate scores. RESULTS: Leadership teams from 20 pediatric intensive care units completed the leadership survey. Individual surveys were completed by 1066 staff members (51% response rate). The 2 most used and impactful resources were 1-on-1 discussions with colleagues and informal social interactions with colleagues out of the hospital. Other resources (taking a break from stressful patients, being relieved of duty after your patient's death, palliative care support for staff, structured social activities out of hospital, and Schwartz Center rounds) were highly impactful but underused. Utilization and impact of resources differed significantly between professions, between those with higher versus lower resilience, and between individuals in units with low versus high teamwork climate. CONCLUSIONS: Institutions could facilitate access to peer discussions and social interactions to promote resilience. Highly impactful resources with low utilization could be targets for improved access. Differences in utilization and impact between groups suggest that varied interventions would be necessary to reach all individuals.

Professionalism and Communication Education in Pediatric Critical Care Medicine: The Learner Perspective.

OBJECTIVE: Communication and professionalism are often challenging to teach, and the impact of the use of a given approach is not known. We undertook this investigation to establish pediatric critical care medicine (PCCM) trainee perception of education in professionalism and communication and to compare their responses from those obtained from PCCM fellowship program directors. METHODS: The Education in Pediatric Intensive Care (E.P.I.C.) Investigators used the modified Delphi technique to develop a survey examining teaching of professionalism and communication. After piloting, the survey was sent to all 283 PCCM fellows in training in the United States. RESULTS: Survey response rate was 47% (133 of 283). Despite high rates of teaching overall, deficiencies were noted in all areas of communication and professionalism assessed. The largest areas of deficiency included not being specifically taught how to communicate: as a member of a nonclinical group (reported in 24%), across a broad range of socioeconomic and cultural backgrounds (19%) or how to provide consultation outside of the intensive care unit (17%). Only 50% of fellows rated education in communication as "very good/excellent." However, most felt confident in their communication abilities. For professionalism, fellows reported not being taught accountability (12%), how to conduct a peer review (12%), and how to handle potential conflict between personal beliefs, circumstances, and professional values (10%). Fifty-seven percent of fellows felt that their professionalism education was "very good/excellent," but nearly all expressed confidence in these skills. Compared with program directors, fellows reported more deficiencies in both communication and professionalism. CONCLUSIONS: There are numerous components of communication and professionalism that PCCM fellows perceive as not being specifically taught. Despite these deficiencies, fellow confidence remains high. Substantial opportunities exist to improve teaching in these areas.

Use of tracheostomy in the PICU among patients requiring prolonged mechanical ventilation.

PURPOSE: The purpose of the present study is to describe the use of tracheostomy, specifically frequency, timing (in relation to initiation of mechanical ventilation), and associated factors, in a large cohort of children admitted to North American pediatric intensive care units (PICUs) and requiring prolonged mechanical ventilation. METHODS: This was a retrospective cohort study. De-identified data were obtained from the VPS(LLC) database, a multi-site, clinical PICU database. Admissions between 1 July 2009 and 30 June 2011 were enrolled in the study if the patient required mechanical ventilation for at least 72 h and did not have a tracheostomy tube at initiation of mechanical ventilation. RESULTS: A total of 13,232 PICU admissions from 82 PICUs were analyzed in the study; of these, 872 (6.6 %) had a tracheostomy tube inserted after initiation of mechanical ventilation. The rate varied significantly (0-13.4 %, p < 0.001) among the 45 PICUs that had 100 or more admissions included in the study. The median time to insertion of a tracheostomy tube was 14.4 days (IQR 7.4-25.7), and it also varied significantly by unit (4.3-30.4 days, p < 0.001) among those that performed at least ten tracheostomies included in the study. CONCLUSIONS: There is significant variation in both the frequency and time to tracheostomy between the studied PICUs for patients requiring prolonged mechanical ventilation; among those who received a tracheostomy, the majority did so after two or more weeks of mechanical ventilation. Future studies examining tracheostomy benefits, disadvantages, outcomes, and resource utilization of this patient subgroup are indicated.

Attitudes about palliative care: a comparison of pediatric critical care and oncology providers.

INTRODUCTION: Pediatric critical care and oncology providers care for patients who have life-threatening or serious illness, yet they receive little palliative care education. OBJECTIVE: Compare oncology and critical care providers' attitudes regarding palliative care. METHODS: An electronic survey assessed respondents' opinions of whether, when, and why palliative care should be utilized. RESULTS: Response rate was 49%. Critical care physicians were more likely to incorporate palliative care for psychosocial support; oncologists for symptom control. Those with palliative care education were more likely to involve in palliative care, did so earlier and for reasons other than end-of-life planning. CONCLUSIONS: Oncology and critical care providers utilized palliative care for different reasons.

Are pediatric critical care medicine fellowships teaching and evaluating communication and professionalism?

OBJECTIVES: To describe the teaching and evaluation modalities used by pediatric critical care medicine training programs in the areas of professionalism and communication. DESIGN: Cross-sectional national survey. SETTING: Pediatric critical care medicine fellowship programs. SUBJECTS: Pediatric critical care medicine program directors. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Survey response rate was 67% of program directors in the United States, representing educators for 73% of current pediatric critical care medicine fellows. Respondents had a median of 4 years experience, with a median of seven fellows and 12 teaching faculty in their program. Faculty role modeling or direct observation with feedback were the most common modalities used to teach communication. However, six of the eight (75%) required elements of communication evaluated were not specifically taught by all programs. Faculty role modeling was the most commonly used technique to teach professionalism in 44% of the content areas evaluated, and didactics was the technique used in 44% of other professionalism content areas. Thirteen of the 16 required elements of professionalism (81%) were not taught by all programs. Evaluations by members of the healthcare team were used for assessment for both competencies. The use of a specific teaching technique was not related to program size, program director experience, or training in medical education. CONCLUSIONS: A wide range of techniques are currently used within pediatric critical care medicine to teach communication and professionalism, but there are a number of required elements that are not specifically taught by fellowship programs. These areas of deficiency represent opportunities for future investigation and improved education in the important competencies of communication and professionalism.

Taking bioethics personally.

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives.

U.S. attitudes and perceived practice for noninvasive ventilation in pediatric acute respiratory failure.

OBJECTIVE: Few pediatric studies exist regarding the use of noninvasive positive-pressure ventilation for acute respiratory failure; however, those that do suggest a role. This study seeks to describe attitudes and perceived practices of pediatric intensivists regarding the use of noninvasive positive-pressure ventilation in children with acute respiratory failure. DESIGN: Electronic survey. SETTING: Medical institutions. PARTICIPANTS: Of the 932 physicians approached, 353 (38%) responded to the survey. Respondents included U.S. physicians practicing pediatric critical care (90%), pediatric anesthesia critical care (4%), pediatric pulmonary critical care (4%), and other disciplines (2%). INTERVENTIONS: Survey. MEASUREMENTS AND MAIN RESULTS: The survey contained questions regarding 1) practitioner demographics, 2) patient characteristics, and 3) clinical cases designed to assess noninvasive positive-pressure ventilation use in certain patient scenarios. Noninvasive positive-pressure ventilation was used by 99% of the respondents, with 60% using noninvasive positive-pressure ventilation as initial support >10% of the time. Respondents reported use of noninvasive positive-pressure ventilation for acute respiratory failure in lower airway disease (70%), asthma (51%), acute lung injury/acute respiratory distress syndrome (43%), and upper airway obstruction (31%). In clinical scenarios, respondents reported that the factors associated with nonuse of noninvasive positive-pressure ventilation as initial support were disease process (31%), oxygenation (19%), ventilation severity (15%), expectation that the patient was likely to worsen (12%), and age or inability to cooperate (11%). CONCLUSIONS: Noninvasive positive-pressure ventilation is widely used and most frequently utilized in patients with acute lower airway disease. Factors such as severe defects in oxygenation and ventilation, disease progression, and patient tolerability decreased the likelihood of use. These findings may help direct further studies of noninvasive positive-pressure ventilation in children with acute respiratory failure.

Alterations in end-of-life support in the pediatric intensive care unit.

OBJECTIVE: Our purpose was to examine alterations in end-of-life support in a multiinstitutional sample of PICUs. METHODS: This was a retrospective, descriptive study. Variables collected included end-of-life support category, race, length of stay, operative status, reason for admission, and Pediatric Index of Mortality 2 score, as well as the number of ICU beds and the presence of trainees. RESULTS: There were 1745 deaths at 35 institutions between January 1, 2004, and September 30, 2005. Of those, 1263 had complete data and were analyzed. The end-of-life support category distribution was as follows: brain death, 296 (23%); do not resuscitate, 205 (16%); limitation of support, 36 (3%); withdrawal of support, 579 (46%); no limitation, 124 (10%); no advance directives, 23 (2%). For further analyses, end-of-life support categories were grouped as limitation (ie, do not resuscitate, limitation of support, or withdrawal of support) versus no limitation (ie, no limitation or no advance directive). Brain death was not included in further analyses. The majority of deaths were in the limitation group (n=820 [85%]), and 12 (40%) of 30 institutions had 100% of deaths in this group. There were significant differences between institutions (P<.001). Decisions for limitation were seen less frequently in the black race (112 [76%] of 147 deaths; P=.037) and in institutions with no trainees (56 [69%] of 81 deaths; P<.001). CONCLUSIONS: Decisions to limit support are common. Black race and an absence of trainees are associated with decreased frequency of limitation decisions.

Staff experiences with end-of-life care in the pediatric intensive care unit.

UNLABELLED: The purposes of this study were to describe the experiences of pediatric intensive care unit (PICU) staff caring for a child who dies, and to determine whether responses included unprompted indications of moral distress as described in the literature. This qualitative, descriptive study consisted of semistructured interviews conducted with professional caregivers of a child who died in a large, multidisciplinary PICU. Interviews were audiotaped, transcribed and subjected to content analysis. Main results Interviews (n = 32) were conducted with 29 staff members regarding 8 patient deaths. Participants included nurses, physicians, and psychosocial support personnel. The overall tone of the interviews was positive, and participants expressed satisfaction with their work and the work of their colleagues. The major themes of staff members experiences were (1) importance of communication, (2) accommodating the wishes of others despite personal preferences, (3) ambiguity about the use of technology, (4) sadness, and (5) emotional support. Descriptions of moral distress were seen infrequently. Many welcomed the sadness they experienced as a sign of their humanity and emotional availability, but did not feel adequately supported in dealing with their grief. CONCLUSIONS: The experience of caring for a child who dies in the PICU is multifaceted. Grief, rather than moral distress, was the dominant psychological response of caregivers. Future research could focus on enhancing communication and emotional support.

Assent for treatment: clinician knowledge, attitudes, and practice.

OBJECTIVES: Our purpose for this work was to explore clinician knowledge, attitudes, and practice regarding assent for medical treatment and to compare current practice with existing American Academy of Pediatrics guidelines. METHODS: One of the investigators administered a questionnaire to clinicians who perform procedures on children at an academic tertiary care pediatric hospital to assess knowledge of assent for medical treatment and familiarity with the American Academy of Pediatrics policy statement on assent and to measure clinician attitudes and approaches to consent/assent in pediatrics. RESULTS: Of 35 clinicians enrolled, 23 (66%) had heard of the term "assent," and 9 (26%) of 35 were aware of the American Academy of Pediatrics policy statement on assent. Twenty five (74%) of 34 thought 1 of the main goals of assent was to educate the child. Only 12 (35%) of 34 included the element of seeking the child's agreement as a goal of assent. In practice, the element of explaining the proposed treatment was "always" included by 26 (74%) of 35. The element of seeking the child's agreement was "always" included by 9 (26%) of 35. CONCLUSIONS: The clinicians in this study had limited explicit knowledge of the concept of assent for medical treatment and were largely unaware of the recommendations from the American Academy of Pediatrics. Their attitudes and practice reflected implicit acceptance of the importance of including children in discussions about their medical care and reluctance to give children decision-making authority. A model of medical decision-making for children that includes education but does not allow children to share decision-making authority may be more applicable to clinical practice than the current American Academy of Pediatrics-supported model of assent.

Hypercapnic acidosis and compensated hypercapnia in control and pulmonary hypertensive piglets.

Low tidal volume/inspiratory pressure ventilator strategies result in hypercapnia, which has been shown to increase pulmonary vasomotor tone. This may be particularly detrimental in infants and children with preexistent pulmonary hypertension. In this study, a piglet model of chronic hypoxia-induced pulmonary hypertension was used to test the hypotheses that: 1) the effects of hypercapnic acidosis are exaggerated by preexistent pulmonary hypertension; and 2) the pulmonary hemodynamic effects of hypercapnic acidosis are attenuated by normalizing pH. Pulmonary hypertension was induced by 2 weeks of hypoxia. Hemodynamic responses were measured in control and pulmonary hypertensive piglets during both normoxia and hypoxia under normocapnic, hypercapnic acidotic, and compensated hypercapnic conditions. We found that: 1) hypercapnic acidosis increased both normoxic and hypoxic pulmonary vascular resistance index (PVRI) in control piglets; 2) the pressor effects of hypercapnia were not attenuated by infusing bicarbonate to normalize the pH; and 3) piglets with chronic hypoxia-induced pulmonary hypertension had elevated baseline normoxic and hypoxic PVRI, but responded to hypercapnic acidosis and compensated hypercapnia in a similar way to control piglets. These data suggest that acute hypercapnic acidosis may have deleterious effects on the pulmonary hemodynamics of normal and pulmonary hypertensive subjects which may not be acutely reversed by buffering the pH.