Perceptions of Interprofessional Practitioners Regarding Pediatric Palliative Transports.

BACKGROUND: Pediatric palliative transport (PPT) is the practice of offering critically and terminally ill children requiring life-sustaining measures the opportunity to be discharged from the hospital to home or a hospice facility for end-of-life care. Although studies have shown PPT to favorably affect both children and their families, limited research exists on the perspectives of health care practitioners. OBJECTIVES: To understand the experience of interprofessional practitioners who have cared for a critically or terminally ill child during a PPT and their perception of PPT as a care option. METHODS: This study is a qualitative descriptive inquiry conducted using 8 focus groups. Participants included interprofessional staff from 4 specialty intensive care units, the pediatric advanced care team, and the critical care transport team at a quaternary, freestanding children's hospital. Content analysis was used to summarize themes and recommendations. RESULTS: Five overarching themes were identified: PPT as a care pathway, education, communication, support, and closure. Use of PPT was perceived as aligned with the hospital's mission of family-centered care and as providing a way for the health care team to support a family's choice. Participants recommended further development of information to guide communication and processes of care that would enhance the experience for families and staff and support PPT as a care pathway. CONCLUSIONS: Pediatric palliative transport is considered a feasible, valuable, and critical end-of-life intervention. The value that PPT has brought to participating families warrants continued investment in the intervention's standardization and enhancement.

Failure to tolerate continuous subcutaneous treprostinil in pediatric pulmonary hypertension patients.

Continuous subcutaneous (SubQ) treprostinil is an effective therapy for pediatric patients diagnosed with pulmonary hypertension (PH). To date, the clinical characteristics and factors associated with failure to tolerate this therapy have not been described. The purpose was to describe patient-reported factors contributing to SubQ treprostinil intolerance in pediatric patients with PH. A retrospective descriptive study was performed at 11 participating sites in the United States and Canada for patients younger than 21 years of age diagnosed with PH who failed treatment to tolerate SubQ treprostinil between January 1, 2009, and December 31, 2019. All data were summarized using descriptive statistics. Forty-one patients met the inclusion criteria. The average age at SQ treprostinil initiation, and length of treatment, was 8.6 years and 22.6 months, respectively. The average maximum dose, concentration, and rate were 95.8 ng/kg/min, 6.06 mg/mL, and 0.040 mL/h, respectively. The reasons for failure to tolerate SubQ treprostinil included intractable site pain (73.2%), frequent site changes (56.1%), severe site reactions (53.7%), infections (26.8%), and noncompliance/depression/anxiety (17.1%). Thirty-nine (95.1%) patients transitioned to a prostacyclin therapy with 23 patients transitioning to intravenous prostacyclin, 5 to inhaled prostacyclin, 5 to oral prostacyclin, and 7 to a prostacyclin receptor agonist. A subset of pediatric PH patients failed to tolerate SubQ treprostinil infusions despite advances in SubQ site maintenance and pain management strategies. Intractable site pain, frequent SubQ site changes, and severe localized skin reactions were the most common reasons for failure.

Validation of the withdrawal assessment tool-1 (WAT-1) in pediatric cardiovascular patients on an inpatient unit.

PURPOSE: Sedation and analgesia are administered to critically ill patients, which may result in physical dependence and subsequent iatrogenic withdrawal. The Withdrawal Assessment Tool-1 (WAT-1) was developed and validated as an objective measurement of pediatric iatrogenic withdrawal in intensive care units (ICUs), with a WAT-1 score ≥ 3 indicative of withdrawal. This study's objectives were to test interrater reliability and validity of the WAT-1 in pediatric cardiovascular patients in a non-ICU setting. DESIGN AND METHODS: This prospective observational cohort study was conducted on a pediatric cardiac inpatient unit. WAT-1 assessments were performed by the patient's nurse and a blinded expert nurse rater. Intra-class correlation coefficients were calculated, and Kappa statistics were estimated. A two-sample, one-sided test of proportions of weaning (n = 30) and nonweaning (n = 30) patients with a WAT-1 ≥3 were compared. RESULTS: Interrater reliability was low (K = 0.132). The WAT-1 area under the receiver operating curve was 0.764 (95% confidence interval; ± 0.123). There was a significantly higher proportion (50%, p = 0.009) of weaning patients with WAT-1 scores ≥3 compared to the nonweaning patients (10%). The WAT-1 elements of moderate/severe uncoordinated/repetitive movement and loose, watery stools were significantly higher in the weaning population. PRACTICE IMPLICATIONS: Methods to improve interrater reliability warrant further examination. The WAT-1 had good discrimination at identifying withdrawal in cardiovascular patients on an acute cardiac care unit. Frequent nurse re-education may increase accurate tool use. The WAT-1 tool may be used in the management of iatrogenic withdrawal in pediatric cardiovascular patients in a non-ICU setting.

Transferring With TACT: A Novel Tool to Standardize Transfer Decisions From a Level IV NICU.

BACKGROUND: Neonatal patients who no longer require level IV neonatal intensive care unit care are transferred to less acute levels of care. Standardized assessment tools have been shown to be beneficial in the transfer of patient care. However, no standardized tools were available to assist neonatal providers in the assessment and communication of the infants needs at transfer. PURPOSE: The purpose was to develop a Transfer Assessment and Communication Tool (TACT) that guides provider decision making in the transfer of infants from a level IV neonatal intensive care unit to a less acute level of care within a regionalized healthcare system. METHODS: Phase 1 included developing the first draft of the TACT using retrospective data, known variables from published literature, and study team expertise. In phase 2, the final draft of the TACT was created through feedback from expert neonatal providers in the regionalized care system using e-Delphi methodology. RESULTS: The first draft of the TACT, developed in phase 1, included 36 characteristics. In phase 2, nurses, nurse practitioners, and physician experts representing all levels of newborn care participated in 4 e-Delphi surveys to develop the final draft of the TACT, which included 74 weighted characteristics. IMPLICATIONS FOR PRACTICE AND RESEARCH: Potential benefits of the TACT include improved communication across healthcare teams, reduced risk for readmission, and increased caregiver visitation. The next steps are to validate the TACT for use either retrospectively or in real time, including characteristic weights, before implementation of this tool in the clinical setting.

Use of Music for Newborns After Cardiac Surgery: A Pilot Study.

BACKGROUND: Music can benefit the neurodevelopmental and clinical care of newborns in the neonatal intensive care unit. Newborns in the cardiac intensive care unit experience similar stressors to those in the neonatal intensive care unit, but music therapy has not been widely studied in the cardiac intensive care unit population. OBJECTIVE: To explore the feasibility of implementing nurse-led music therapy in a cohort of newborns recovering from cardiac surgery in the cardiac intensive care unit. METHODS: Lullabies were prerecorded and played for 20 minutes, 2 times per day. Bedside nurses recorded several metrics at designated times during the 1 hour surrounding the music therapy and were asked about the ease of initiating the therapy and their perception of any benefit to the newborns. Parents were invited to complete a 9-question Likert survey exploring their perception of and satisfaction with the music therapy. RESULTS: Nurse-led music therapy was initiated in 44 of 50 eligible shifts (88%) for the 8 newborns who successfully completed the study. The newborns' physiological status remained stable throughout the music therapy sessions. None of the newborns experienced adverse events related to music therapy. All nurses (100%) reported that the music therapy was easy to administer. Parents "agreed" or "strongly agreed" that they were satisfied with the music therapy provided to their newborns. CONCLUSION: Nurse-led music therapy was highly feasible for hemodynamically stable newborns recovering from cardiac surgery. Parents and nursing staff responded positively to the music therapy.

Safety and feasibility of the paediatric post-cardiac catheterisation Wrap: a pilot study.

OBJECTIVE: The paediatric post-cardiac catheterisation Wrap (Wrap), an innovative medical safety device, swaddles young paediatric patients in a supine position aiding in immobilisation post-cardiac catheterisation. This pilot study investigated the feasibility and safety of using the Wrap on young paediatric patients during their bed rest period following cardiac catheterisation with femoral access. SETTING: Boston Children's Hospital Cardiac Catheterization Lab. PARTICIPANTS: 20 patients, ages 1-5 years and weighing 3-25 kg. METHODS: Investigator-developed tools used to collect data included the Demographic and Outcome Measures Data Tool, the Parent/Caregiver Satisfaction, and Provider Ease of Use tools. They measured:1.The feasibility of using the Wrap2.Wrap ease of use from the nurse providers' perspective3.Parent satisfaction related to the Wrap4.Frequency of Wrap non-bleeding-related adverse events5.Frequency of rebleeding at femoral groin access sites. RESULTS: The Wrap was feasible and safe; increased nurse provider satisfaction by allowing visualisation of the groin access sites while minimising the need for hands-on care; and increased parent satisfaction by allowing parents to hold and provide comfort while their child was on bed rest. IMPLICATIONS FOR RESEARCH: The Wrap is a safe alternative to the current practice of swaddling with a bath blanket. Further studies are warranted to assess the Wrap's effectiveness in reducing the incidence of rebleeding events in the post-cardiac catheterisation period and explore clinical use outside of the Cardiac Catheterization Lab.

#Healthcare: Patient and Family Uses and Perceptions of Health Care Social Media.

BACKGROUND/INTRODUCTION: Although social media is becoming a primary resource for information and support in all aspects of life, including health care, limited information is available describing social media use in parents whose child undergoes surgical care. OBJECTIVES/AIMS: The aims of this study were to describe how patients/families use social media to address health care needs and understand their perceptions of social media privacy and reliability. METHODS: A descriptive survey of 39 questions, both fixed choice and open ended, was distributed to a convenience sample of parents during their child's preoperative visit. Descriptive statistics were used to summarize fixed-choice responses. Content analysis was used to assess open-ended responses and comments. RESULTS: A total of 205 completed surveys were available for review. Overall, 195 (95.6%) reported using social media, with 70 (35%) using social media up to 5 times a day and another 61 (30.5%) using it 6 to 40 times a day. Respondents used social media for medical information (122/60.1%), to make health care decisions (53/26.5%), after a diagnosis (104/52%), after a medical visit (88/44%), and to update friends and family (129/65.5%). Most respondents were undecided (111/58.1%) when asked how reliable medical information was on social media sites, with 33 (17.3%) believing medical information to be "reliable to very reliable" on social media sites. Among the 61 comments received, 4 themes emerged: Spectrum of Social Media Use, Social Media and Health Care Interaction, Social Media as a Source of Support and Peer Experience, and Reliability of Social Media. DISCUSSION: Most respondents utilized social media for health care information while reporting feeling undecided on the reliability of the information. Understanding the multiple ways patients and families utilize social media provides health care members opportunities to discuss medical information, inform health care decision making, and support patient and family needs.