Leadership, professional quality of life and moral distress during COVID-19: A mixed-methods approach.

AIM: To understand the impact of professional stressors on nurses' and other health care providers' professional quality of life and moral distress as they cared for patients during the COVID-19 pandemic. BACKGROUND: Health care providers caring for patients during the COVID-19 pandemic are at increased risk of decreased professional quality of life and increased moral distress. METHODS: A convergent mixed-methods design and snowball sampling was used to collect survey data (n = 171) and semi-structured interviews (n = 23) among health care providers working in the inpatient setting. RESULTS: Perceived lack of support from executive leadership, access to personal protective equipment and constantly changing guidelines led to decreased professional quality of life and increased moral distress among health care providers. CONCLUSION: Findings from this study indicate that shared governance, disaster management training and enhanced communication may assist executive leadership to reduce the likelihood of decreased professional quality of life and increased moral distress in front line health care providers. IMPLICATIONS FOR NURSING MANAGEMENT: Following the principles of shared governance may assist executive leadership to promote and acknowledge the significance of the role of health care providers at the bedside. Additionally, disaster management training and open communication are crucial to ensure that health care providers are adequately informed and supported at the bedside.

Maternal experiences of caring for a child with a ventricular assist device.

The purpose of this study was to gain a deeper understanding of maternal experiences of caring for their child with a VAD at home as a bridge to transplant. A descriptive, qualitative study was conducted via telephone-recorded guided interviews. Participants were caring for or had a child with a VAD between 4 and 16 years old. Data collection occurred over a 12-month period. Using the snowball sampling technique, a purposeful sample of mothers (n = 6) was consented and completed the interview. The data were analyzed using an iterative process of thematic analysis. Five themes emerged: physical modifications, the loss of independence, the emotional rollercoaster, support from others, and transitions on and off the device. We introduced new evidence about sleep, contraception, and heart transplantation, and how VAD therapy impacts childhood development. The mean duration of VAD support was 263 ± 170 days. Five children had heart transplants by the time of interview. To the best of our knowledge, this is the first qualitative study in the US that explores maternal experiences of caring for a child who is living at home with a VAD. VAD therapy is a novel approach to managing advanced heart failure among children and presents unique challenges when caring for them at home. Results provide insight into the education, physical environment, and support needed by parents.

Symptom progression in advanced Parkinson's disease: Dyadic perspectives.

This qualitative descriptive study investigated the self-reported symptoms of people with advanced Parkinson's disease. Fifteen dyads (person with Parkinson's and family caregiver) participated in two semi-structured interviews over a six-month time period; content analysis was used to explore the progression and new onset of symptoms. Reported symptoms in descending order included gait deterioration, falls, speech impairment, cognitive decline, functional decline, gastrointestinal and genitourinary changes, and swallowing impairment. The presence of multiple, compounding symptoms present challenges for maintaining safety in the home, highlighting the need for in-home services to assist with symptom management. Change in self-reported symptom experience was not significantly different after a six-month time frame. Symptom progression in advanced Parkinson's disease may take longer than six months to appreciatively manifest. Therefore, future research should explore the progression of advanced Parkinson's disease longitudinally over of period of time that exceeds six months.

Risk-Taking Behaviors in Adolescents With Chronic Cardiac Conditions: A Scoping Review.

PROBLEM: Advances in treatment and therapy for children with chronic cardiac conditions have extended their life expectancy. Risk-taking behavior among adolescents requires further exploration. Researchers conducted a scoping review to address a literature gap specific to risk-taking behavior among adolescents with chronic cardiac conditions. ELIGIBILITY CRITERIA: Sources were limited to (1) human subjects, (2) English language or translatable to English, (3) adolescents without age restrictions, (4) all research designs and (5) presence of a chronic cardiac condition. SAMPLE: Searches of six electronic databases (CINAHL Plus Full Text, PubMed, Web of Knowledge, Scopus, ProQuest and Grey Literature Report) were conducted to verify the empirical literature between 1975 and 2018. Seventeen sources were included in this review. RESULTS: Among the 17 sources, 12 sources examined risk-taking behavior by self-report among adolescents with chronic cardiac conditions. Tobacco, alcohol and/or other drug use and physical inactivity were the most prevalent risk-taking behaviors identified through this review. CONCLUSIONS: Findings from this scoping review describe the types of risk-taking behaviors that adolescents with chronic cardiac conditions are engaging in, highlight similarities when compared to other types of chronic conditions, and serve as a foundation for future research among this population. IMPLICATIONS: Discussion of risk-taking behaviors should be integrated into each healthcare encounter beginning in early adolescence and continuing through transition to adulthood and adult health care. Qualitative research studies may serve as an effective method by which to explore risk-taking behavior among adolescents with chronic cardiac conditions in greater detail.

Quality Over Quantity: Standardization of Pediatric HeartWare Ventricular Assist Device Dressing Changes.

Pediatric patients are unique both in their diagnosis and clinical presentation before implantation of a ventricular assist device (VAD) and in their driveline site characteristics post-implant. There is limited evidence in scholarly literature that describes complications of pediatric VAD driveline sites or approaches by which to manage them. The Cardiac Center at The Children's Hospital of Philadelphia (CHOP) follows a standard of care for HeartWare VAD (HVAD) dressing changes in the inpatient setting with the goal of transitioning patients to weekly dressing changes by the time they are discharged to home. As a patient with an HVAD nears discharge, members of an interprofessional team collaborate with insurance providers and home care agencies to procure the appropriate supplies needed at home. Individualized plans of care are necessary for patients who are unable to transition to weekly dressings; however, customized products (such as silicone foam border dressings and antimicrobial agents) may be challenging to supply as single items from home care agencies. Between March 2014 and June 2017, 15 patients underwent HVAD implantation, and eight (53%) were discharged home. Ten patients (67%) were able to transition to weekly dressing changes. Individualized plans of care for driveline site management were required for six (40%) patients with persistent drainage. Three patients (20%) experienced a driveline site infection. This article describes how a quality improvement (QI) initiative using rapid-cycle improvement methodology was executed to standardize HVAD dressing changes in our pediatric population.

Home Is Where the HeartWare Is: Preparing Pediatric Patients and Caregivers for Discharge to Home and Integration Into the Community.

The Cardiac Center at The Children's Hospital of Philadelphia has cared for patients with implanted ventricular assist device (VAD) technology since 1998. Historically, patients requiring VAD support were managed exclusively in the Cardiac Intensive Care Unit with the first medically stable transition to the Cardiac Care Unit (step-down) taking place in 2001. Patient management was confined to the inpatient setting, as the primary device used at the time was paracorporeal and not suitable for home use. Continuous-flow devices, such as the HeartWare HVAD, have gained popularity because of miniaturized size and lower profiles of side effects and adverse events, making them more suitable for home use. This article describes a single-center experience with transitioning the VAD-supported pediatric patient to the outpatient setting, highlighting outcomes, strategies, and lessons learned in order to support VAD patients and their caregivers in the hospital and community setting.

Whole-lung lavage for pediatric patients with pulmonary alveolar proteinosis.

Pulmonary alveolar proteinosis (PAP) is a chronic disorder of surfactant clearance from the alveoli. Its prevalence is rare, especially in the pediatric population. Although there is no cure for this condition, symptoms of PAP are managed most effectively through whole-lung lavage (WLL). Perioperative RNs caring for children with PAP undergoing WLL in the OR should implement patient interventions to maintain vital signs and normothermia and preserve skin integrity. Additionally, perioperative RNs often are responsible for assembling closed-drainage systems for WLL. Detailed procedural preference cards, targeted education sessions, and multidisciplinary collaboration are crucial for establishing a comprehensive plan of care for the pediatric patient with PAP undergoing WLL in the OR.