An Alternative Consent Process for Minimal Risk Research in the ICU.

OBJECTIVES: Seeking consent for minimal risk research in the ICU poses challenges, especially when the research is time-sensitive. Our aim was to determine the extent to which ICU patients or surrogates support a deferred consent process for a minimal risk study without the potential for direct benefit. DESIGN: Prospective cohort study. SETTING: Five ICUs within a tertiary care hospital. PATIENTS: Newly admitted ICU patients 18 years old or older. INTERVENTIONS: We administered an eight-item verbal survey to patients or surrogates approached for consent to participate in a minimal risk, ICU-based study. The parent study involved noninvasive collection of biosamples and clinical data at the time of ICU admission and again 3 days later. If patients had capacity at the time of ICU admission, or if a surrogate was readily available, consent was sought prior to initial sample collection; otherwise, a waiver of consent was granted, and deferred consent was sought 3 days later. Quantitative and qualitative data were analyzed. MEASUREMENTS AND MAIN RESULTS: One hundred fifty-seven individuals were approached for consent to participate in the parent study; none objected to the consent process. One hundred thirty-five of 157 (86%) competed the survey, including 94 who consented to the parent study and 41 who declined. Forty-four of 60 individuals (73%) approached for deferred consent responded positively to the question "Did we make the right choice in waiting until now to ask your consent?" three of 60 (5%) responded negatively, and 13 of 60 (22%) made a neutral or unrelated response. The most common reason given for endorsing the deferred consent process was the stress of the early ICU experience 25 of 44 (61%). CONCLUSIONS: Most patients and surrogates accept a deferred consent process for minimal risk research in the ICU. For appropriate ICU-based research, investigators and Institutional Review Boards should consider a deferred consent process if the subject lacks capacity and an appropriate surrogate is not readily available.

Development and Implementation of a Training-of-Trainers Program for Continuous Positive Airway Pressure in Neonatal and Pediatric Patients in Five Low- and Middle-Income Countries.

We describe a pragmatic training-of-trainers program for the use of continuous positive airway pressure (CPAP) for neonatal and pediatric patients. The program is designed for medical professionals working in low- and middle-income countries and involves 2 days of in-class training followed by 1 day of in-service training. The program was created after training in Cambodia, Ghana, Honduras, Kenya and Rwanda and addresses the issues of resource availability, cultural context and local buy-in and partnership in low- and middle-income countries. We hope others will use the training program to increase knowledge and use of CPAP with the ultimate goal of improving neonatal and pediatric survival globally.

Aftermath of a clinical trial: evaluating the sustainability of a medical device intervention in Ghana.

A randomized controlled trial recently demonstrated that continuous positive airway pressure (CPAP) effectively decreases respiratory rate in children presenting to Ghanaian district hospitals with respiratory distress. A follow-up study 16 months later evaluated the extent to which the skills and equipment necessary for CPAP use have been maintained. Seven of eight CPAP machines were functional, but five of eight oxygen concentrators and three of four electric generators were non-functional. Nurses trained by US study personnel (first-generation) and nurses trained by Ghanaian nurses after the study (second-generation) were evaluated on CPAP knowledge and skills. Twenty-eight nurses participated in the study, 9 first-generation and 19 second-generation. First-generation trainees scored significantly higher than second-generation trainees on both skills and knowledge assessments (p = 0.003). Appropriate technical support and training must be ensured to address equipment maintenance. Protocolization of the training program, in conjunction with skills and knowledge assessment, may improve acquisition and retention among second- and future-generation trainees.

Variability in the implementation of rapid response teams at academic American pediatric hospitals.

Pediatric rapid response teams have become standard over the past decade, but are organized heterogeneously at US academic hospitals, with rare financial support. To compare rapid response team efficacy, pediatric hospitals should agree on standard outcome measures, whether it be a standard definition of floor arrest or of clinical deterioration.

A randomized clinical trial evaluating nasal continuous positive airway pressure for acute respiratory distress in a developing country.

OBJECTIVE: Invasive mechanical ventilation is often not an option for children with acute respiratory infections in developing countries. An alternative is continuous positive airway pressure (CPAP). The authors evaluated the effectiveness of CPAP in children presenting with acute respiratory distress in a developing country. STUDY DESIGN: A randomized, controlled trial was conducted in 4 rural hospitals in Ghana. Children, 3 months to 5 years of age, presenting with tachypnea and intercostal or subcostal retractions or nasal flaring were randomly assigned to receive CPAP immediately or 1 hour after presentation. CPAP was applied by locally trained nurses. The primary outcome measure was change in respiratory rate at 1 hour. RESULTS: The study was stopped after the enrollment of 70 subjects because of a predetermined stop value of P < .001. Mean respiratory rate of children who received immediate CPAP fell by 16 breaths/min (95% CI 10-21) in the first hour compared with no change in children who had CPAP delayed by 1 hour (95% CI -2 to +5). Thirty-five of the patients had a positive malaria blood smear. There were 3 deaths as a result of severe malaria. No major complications of CPAP use were noted. CONCLUSIONS: CPAP decreases respiratory rate in children with respiratory distress compared with children not receiving CPAP. The technology was successfully used by local nurses. No complications were associated with its use. CPAP is a relatively low-cost, low-technology that is a safe method to decrease respiratory rate in children with nonspecific respiratory distress.

Informed consent for bedside procedures in the pediatric intensive care unit: a preliminary report.

OBJECTIVES: No uniform guidelines exist regarding informed consent for bedside procedures in the intensive care unit (ICU), and practice varies widely between institutions. Neither guidelines nor data exist to help pediatric ICU (PICU) directors craft procedural consent policies. We conducted an exploratory study to explore the impact on patients, parents, and healthcare providers of a requirement for informed consent for bedside procedures in the PICU and to describe parental and provider beliefs regarding procedural consent. DESIGN: Prospective, observational and survey-based exploratory study. SETTING: Single-center, tertiary care, university-affiliated PICU. PATIENTS: Children admitted to the PICU and undergoing an invasive bedside procedure. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: During two 14-day periods, all bedside procedures conducted in the PICU were identified. Consent forms were reviewed, and parents and the healthcare providers who participated in the consent discussion were invited to complete a brief verbal questionnaire regarding the consent process. Quantitative data are presented using descriptive statistics and qualitative data were analyzed using thematic coding. During the study period, 50 bedside procedures were performed. Informed consent was not obtained for two emergent procedures. Only the first procedure on a child was included in the study, leaving 41 informed consent discussions for analysis. Consent was obtained in person in 33 cases (80%) and over the phone for the remainder. The median reported duration of the informed consent discussion was 5 mins. Ninety-six percent of parents correctly recalled what procedure had been performed, and 92% correctly recalled at least one reason for the procedure, but only 58% recalled at least one risk of the procedure. Parents viewed themselves as the primary decision makers, and many parents believed that their refusal of consent would be honored even if it would potentially harm the child. However, no parent refused or even significantly resisted giving consent for a procedure recommended by their child's healthcare provider. CONCLUSION: Parental consent for invasive bedside procedures in the PICU can be obtained reliably and without posing an undue time burden on healthcare providers. Most parents perceive a real decision making opportunity surrounding invasive procedures, but agree readily to the recommendations of their healthcare providers.

How to hold an effective NICU family meeting: capturing parent perspectives to build a more robust framework.

OBJECTIVE: To record the content and parental perceptions of family meetings in a Neonatal Intensive Care Unit (NICU) to improve existing frameworks for facilitating these meetings. STUDY DESIGN: A prospective, mixed-methods study. NICU family meetings were audio-recorded, transcribed, and analyzed by an iteratively derived coding framework until thematic saturation. We used descriptive statistics of parental post-meeting assessments. RESULTS: Qualitative analysis of 21 meetings identified both Communication Facilitators and Barriers. Facilitators included use of visual-aids and participation of social workers to clarify information for parents. Barriers included staff rarely eliciting parental comprehension (3 meetings) or concerns (5) before providing new information, resulting in 39% of parents reporting they didn't ask questions they wanted to ask. In 33% of meetings an important participant was absent. CONCLUSIONS: This novel qualitative and quantitative dataset of NICU family meetings highlights areas for improving communication. Attention to these components may improve parental perceptions of family meetings.

Adolescent and Parent Perceptions about Participation in Biomedical Sexual Health Trials.

Given the burden of HIV and other sexually transmitted infections among adolescents who are legal minors, it is critical that they be included in biomedical sexual health trials to ensure that new prevention and treatment interventions are safe, effective, and acceptable for their use. However, adolescents are often not well represented in clinical trials. We provide an overview of the available evidence regarding adolescent and parent willingness for adolescents to participate in biomedical sexual health trials, parental involvement in the permission-consent process, management of differences and discord among adolescents and parents, and parental involvement throughout the study period. We also outline recommendations for current practice and areas for future research.

Decisions for Long-Term Ventilation for Children. Perspectives of Family Members.

Rationale: The decision whether to initiate or forgo long-term ventilation for children can be difficult and impactful. However, little has been published on the informational and decisional needs of families facing this decision.Objectives: To assess what families with children with chronic respiratory failure and life-limiting conditions need and want for informed decision-making.Methods: English- and Spanish-speaking parents who were facing (contemporaneous decision makers) or had previously faced (former decision makers) a decision regarding invasive or noninvasive long-term ventilation for their children were recruited using convenience sampling. Patients who were older and cognitively capable also were invited to participate. We performed semistructured interviews using an open-ended interview guide developed de novo to assess parents' decisional needs and experiences. Qualitative data analysis used a thematic approach based on framework analysis, and thematic saturation was a goal.Results: A sample of 44 parents and 2 patients from 43 families was interviewed. All contemporaneous decision makers (n = 28) favored or believed that they would choose long-term ventilation. Fifteen of 16 former decision makers chose long-term ventilation. Thematic saturation was achieved from the perspective of parents who favored or chose long-term ventilation. Four domains were identified: parents' emotional and psychological experiences with decision-making, parents' informational needs, parents' communication and decision support needs, and parents' views on the option not to initiate long-term ventilation. For most parents, making a decision regarding long-term ventilation was stressful, even though they articulated goals and values that could/did guide their decision-making. In general, parents wanted comprehensive information, including what life would be like at home for the child and the family. They wanted their medical providers to be honest, tactful, patient, and supportive. Parents reported that they felt being presented with the option not to initiate was acceptable.Conclusions: In this study, we identified specific informational and decision-making needs regarding long-term ventilation that parents facing decisions feel are important. These data suggest that providers should present families with comprehensive, balanced information on the impact of long-term ventilation and, when the child has a profoundly serious and life-limiting condition, explore the option not to initiate long-term ventilation.

Parental presence on pediatric intensive care unit rounds.

OBJECTIVE: To comprehensively evaluate the effect of parental presence on pediatric intensive care unit rounds. STUDY DESIGN: A prospective, observational and survey-based study comprised of (1) observation of rounds (2) "rounding event assessments" (brief surveys specific to 1 rounding event, completed by health care providers [HCPs] n = 375) (3) qualitative interviews with parents (36 who joined rounds and 16 who elected not to join), and (4) qualitative written surveys from HCPs (63 nurses, 39 doctors). RESULTS: Eighty-one percent of parents who chose to join rounds reported that participation increased their overall satisfaction with their child's care. In 57% of rounding events, at least 1 HCP learned new, pertinent information from the parents. However, in 32% of rounding events, at least 1 HCP believed parental presence limited discussion. Forty-seven percent of parents who participated in rounds and 88% of those who chose not to participate volunteered that participation has the potential to increase parental confusion and anxiety (P = .02). CONCLUSIONS: Most parents and physicians agree that parents should be invited to participate on rounds. Parents report increased satisfaction from participation, and parents provide new information when on rounds. However, parental presence may limit discussion during rounds which may adversely affect patient care.

Neuron-specific enolase and S-100B are associated with neurologic outcome after pediatric cardiac arrest.

OBJECTIVE: To characterize the pattern of serum biochemical markers of central nervous system injury (neuron-specific enolase [NSE], S-100B, plasminogen activator inhibitor-1 [PAI-1]) after pediatric cardiac arrest and determine whether there is an association between biomarker concentrations and neurologic outcome. DESIGN: Prospective, observational study. SETTING: Urban, tertiary care children's hospital. PATIENTS: Cardiac arrest survivors, n = 35. INTERVENTIONS: Serial blood sampling, pediatric cerebral performance category, and standardized neurologic examination. MEASUREMENTS AND MAIN RESULTS: Serial serum NSE and S-100B concentrations over 96 hrs and PAI-1 at 24 hrs were measured in children (age <18 yrs) who had return of spontaneous circulation following cardiac arrest. Neurologic outcome was prospectively categorized as poor if the change in pre- to postarrest pediatric cerebral performance category was > or =2. Biomarker concentrations were compared between outcome groups and between survival groups using longitudinal analysis correcting for multiple comparisons. Median levels (25th, 75th percentiles) are reported. Receiver operating characteristic analyses were performed at all time points. Biomarker concentrations showed statistically significant differences. Of the 35 patients, neurologic outcomes were poor in 19, with 15 deaths. Median NSE concentrations differed by outcome when measured at > or =48 hrs, and by survival at > or =24 hrs. S-100B concentrations were not significantly associated with neurologic outcome. S-100B levels were associated with survival outcome at > or =48 hrs. PAI-1 levels were not significantly associated with either neurologic or survival outcomes. CONCLUSIONS: The timing, intensity, and duration of serum NSE and S-100B biomarker concentration patterns are associated with neurologic and survival outcomes following pediatric cardiac arrest. Serum NSE concentrations at > or =48 hrs are associated with neurologic outcome, whereas serum S-100B levels at > or =48 hrs are associated with survival. Prospective analysis of these markers may help to predict outcomes and guide postresuscitative therapies.

Preparing Families of Technology-Dependent Children for Emergencies.

OBJECTIVES: To characterize the baseline level of emergency preparedness among families of technology-dependent children admitted to our PICU and to determine if an ICU-based planning intervention can sustainably improve families' disaster preparedness. METHODS: A single-arm, survey-based study used to assess participants' preparedness to handle a 72-hour home power outage on the basis of a novel 8-point checklist. Parents of patients in the study completed the survey questions when their child was admitted to the PICU, discharged, or transferred from the PICU, after at least 2 weeks at home, and after at least 6 months at home. This study included a cohort of 50 children younger than18 years old who required daily use of at least 1 piece of qualifying electronic medical equipment at home and their custodial parents. The checklist surveyed was designed with the goals of maximizing care capacity at home during a power outage and planning for evacuation. Counseling and other resources were provided on the basis of item completion at admission assessment. RESULTS: Patients' families completed a median of 3 items (range: 0-8; N = 50) at admission, 4 items (range: 1-8; n = 45) at discharge, and 7 items (range: 3-8; n = 37) at the 2-week follow-up and retained 7 items (range: 5-8; n = 29) at the 6-month follow-up. Completion rates were significantly higher at each follow-up time point compared with baseline (P < .001). CONCLUSIONS: Families of technology-dependent children admitted to our PICU have significant disaster-preparedness needs, which can be addressed with an inpatient intervention.

The Impact of Parental Presence on Trainee Education During PICU Rounds: A Brief Report.

OBJECTIVES: To determine the impact of parental presence on the number and types of educational questions asked of and by medical trainees during PICU rounds. METHODS: An investigator joined bedside rounds in a 14-bed medical-surgical PICU on 20 weekdays between December 2016 and June 2017. For each patient, the investigator recorded the time devoted to education. Educational questions were recorded verbatim. Questions were categorized as "teaching" (senior team member to a trainee) or "learning" (trainee to a more senior team member) and by content (eg, physiology, imaging, prognosis). Two blinded investigators independently assigned codes to each educational question; discrepancies were resolved to the satisfaction of both. RESULTS: Data include 151 patient-specific rounding events, involving 92 patients. At least 1 parent attended the entirety of 59/151 rounding events (39%). There were no significant differences between the duration of education or the number of educational questions asked when parents were present (1 minute; 2 questions) versus absent (2 minutes; 2 questions). When parents were present, 20% questions were learning versus 25% when parents were absent. Zero percent of rounding events included ≥1 question about prognosis when parents were present versus 9% when absent (P = .02). There was no statistically significant difference in the frequency of questions related to complications of management or social factors. CONCLUSIONS: Parent participation in rounds did not impact the quantity of education during rounds but did impact the type of educational questions asked, specifically restricting the discussion of patient prognosis.

Increasing amiodarone use in cardiopulmonary resuscitation: an analysis of the National Registry of Cardiopulmonary Resuscitation.

OBJECTIVE: To examine practice patterns of amiodarone use during in-hospital cardiac arrest. This study addresses the changing pattern of amiodarone use over time, following the publication of landmark studies and the inclusion of amiodarone in the American Heart Association Guidelines for Cardiopulmonary Resuscitation and Emergency Cardiovascular Care. Furthermore, this study examines the impact of hospital and patient specific factors on the use of amiodarone. DESIGN: Retrospective cohort study, using the National Registry for Cardiopulmonary Resuscitation, an international registry of in-hospital resuscitation events. PATIENTS: All patients with an in-hospital ventricular fibrillation (VF) or pulseless ventricular tachycardia (pVT) event reported to the national registry from January 1, 2000, to July 31, 2005. MEASUREMENTS AND MAIN RESULTS: During the study period, 14,854 of 29,552 (50%) adults (> 18 yrs old) with VF/pVT received an antiarrhythmic drug; 8,883 (60%) of these patients received amiodarone. In adults, amiodarone use for VF/pVT increased from 25% in 2000 to 72% in 2005 (p < .0001). Among children, 270 of 553 (49%) VF/pVT episodes were treated with an antiarrhythmic drug; 108 (40%) of these patients received amiodarone. Adults in institutions with larger intensive care units (> 50 beds) were more likely than those in institutions with smaller intensive care units (< or = 50 beds) to receive amiodarone; the association persisted in multivariable analysis (odds ratio [OR] = 1.825; 95% confidence interval [CI], 1.694-1.966). Thirty five percent of adults with VF/pVT who received amiodarone also received lidocaine, while 67% of children who received amiodarone also received lidocaine (p < .001). It is not possible to determine from the database the order in which medications were administered. CONCLUSIONS: There has been a significant increase in amiodarone use for VF/pVT events over the past 5 yrs. The frequency of amiodarone use in adults correlated positively with the number of intensive care beds. These results suggest that emerging data and national guidelines affect resuscitation practice patterns.

Extracorporeal cardiopulmonary resuscitation in refractory pediatric cardiac arrest.

The purpose of this article is to discuss the indications for extracorporeal cardiopulmonary resuscitation (ECPR), physiologic and mechanical issues that arise in patients managed with ECPR, and optimal patient selection for ECPR. ECPR can provide very good outcomes for some children who, in all likelihood, would otherwise have died. Having the capability to routinely offer ECPR represents an enormous institutional commitment of people and resources. For ECPR to be successful, it must be rapidly deployed, patients must be selected with care, and consistently excellent conventional CPR must take place while awaiting ECPR.

Impact of a Clinical Trial in Two District Hospitals in Ghana: Perspectives of Ghanaian Researchers.

Conducting clinical trials in resource-poor settings may contribute to local capacity building. We describe the perspectives of local research personnel regarding the impact of collaborating in a clinical trial in rural Ghana. Forty-six Ghanaian research personnel were eligible to complete an anonymous survey, and 35 (76%) participated. Of the 35 respondents, 32 (91%) agreed that future patients will benefit because the hospital was part of the study. All 35 respondents reported a personal benefit derived from study involvement, most commonly citing skills or knowledge gained. Of the 35 individuals, 21 reported one or more burdens, most commonly citing nonspecific research responsibilities. Our data support the hypothesis that participation in clinical trials can contribute to capacity building in district hospitals in a lower middle-income country.

Parental opinions about clinical research.

OBJECTIVE: To characterize parental perception of clinical research, particularly in emergency settings. To identify specific aspects of clinical research that concern parents and to discuss how these concerns can be addressed. STUDY DESIGN: Quantitative and qualitative survey in tertiary care children's hospital and affiliated clinics. RESULTS: Family caregivers (n = 136) participated in this study; 81% of study participants agreed or strongly agreed that physicians should do research involving children, with 5% disagreeing. However, 18% felt that researchers care more about the research than about the patient, and 13% believed that when a child is in a research study, physicians must follow the research protocol even if it is not in the best interest of the child. Participants were significantly less likely to endorse the conduct of research in an emergency setting than in a nonspecified setting (P < .001). Parents' foremost concern about emergency research was that it could delay therapy or distract physicians' attention from the child's needs. CONCLUSION: Parents largely support pediatric clinical research, but they have specific concerns that should be addressed in research planning and in communicating with parents about clinical research.

Parental opinions regarding an opt-out consent process for inpatient pediatric prospective observational research in the US.

OBJECTIVE: To explore parental opinions regarding opt-out consent for inpatient pediatric prospective observational research in the US. STUDY DESIGN: A series of handouts describing hypothetical observational research studies with opt-out consent were reviewed by parents of hospitalized children. A verbal survey explored parental opinions about the proposed consent process. RESULTS: A total of 166 parents reviewed the handout and completed the survey. Only 2/166 parents (1.2%) objected to the study described and another 10 (6.0%) cited concern about the privacy of their child's medical information. A total of 157 parents were asked "Is it okay to tell you about this kind of research using this handout?" - 116 (74%) responded positively, 19 (12%) responded negatively, and 21 (13%) made an indeterminate or neutral response. When parents were asked to recommend a specific consent approach for observational research, 86 (52%) chose an opt-in approach, 54 (33%) chose opt-out, and 25 (15%) chose "no consent needed". There were no significant associations between parental preferences and whether the child was admitted to the intensive care unit vs. pediatric ward, and no significant difference found based on type of handout reviewed (generic vs. study-specific). CONCLUSION: Few parents voiced objection to a hypothetical opt-out consent process for inpatient pediatric prospective observational research. When asked to recommend a specific consent approach, though, approximately half chose an opt-in approach. These data suggest that an opt-out consent process for observational inpatient research is likely to be acceptable to parents, but assessment of an opt-out consent process in a real-world setting is needed.

Consent for organ donation after circulatory death at U.S. transplant centers.

BACKGROUND: Despite calls for a controlled organ donation after circulatory death (cDCD) consent process that is more rigorous, consistent, and transparent, little is known about the cDCD consent processes utilized by U.S. hospitals. The objective of this research was to describe the cDCD consent policies of U.S. transplant hospitals, including consent for antemortem interventions (AMI), in order to inform the development of a more rigorous and sound consent process. METHODS: Cross-sectional study data of cDCD policies of U.S. transplant hospitals were collected between July 2013 and October 2014. Respondents submitted their policies for investigator review and/or completed a 25-item Web-based survey describing their hospital's cDCD and AMI policies. There were 209 U.S. adult transplant hospitals identified through the Organ Procurement and Transplantation Network (OPTN). RESULTS: One hundred responses were received, representing 48% of all 209 U.S. transplant hospitals and 60% of the 168 transplant centers with an identified knowledgeable informant. In 79 policies (79%), organ procurement organization representatives (OPOs) are given sole responsibility for obtaining signed cDCD consent. Thirty-four policies (34%) give OPOs the responsibility for obtaining written AMI consent, 13 policies give it to treating physicians, and 6 policies state that AMI consent must be obtained collaboratively. Treating physicians have no delineated responsibilities in the cDCD and AMI consent process in 70 (70%) and 58 (58%) policies, respectively. We observed wide variability in the acceptability of first-person authorization (FPA) for cDCD and AMI; FPA was rejected as evidence of consent for cDCD and AMI in 7 and 11 policies, respectively. CONCLUSIONS: The cDCD consent policies of U.S. transplant hospitals are highly variable and inconsistent in addressing key aspects of the consent process. The major policy differences observed raise questions about what constitutes a sound and comprehensive cDCD consent policy.

Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs.

RATIONALE: The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. OBJECTIVES: To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. METHODS: Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. RESULTS: A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and burdens/risks of LTV for the child and of the option to forgo LTV. All stress to families the physical, emotional, and social impact of caring for a child using LTV on the family; 12 directors also highlight the financial impact. All recommend that decision-making around LTV should be interdisciplinary, initiated early, and not rushed; nine described their approach as guided by the family's goals for the child and their family. All recommend that providers be transparent, candid, active listeners, and supportive. All directors believe that the family's decision should be respected, but vary in the extent to which they recommend an option to families. They described barriers to decision-making that stem from families, providers, and other sources. CONCLUSIONS: As providers who follow children using LTV, directors of pediatric home ventilation programs have perspectives regarding the decisional needs of these families and how to meet them that can help inform and shape the practices of other providers who assist families facing this decision.