Promoting Parent Partnership in Developmentally Supportive Care for Infants in the Pediatric Cardiac Intensive Care Unit.

BACKGROUND: Limited opportunities for parents to care for their critically ill infant after cardiac surgery can lead to parental unpreparedness and distress. PURPOSE: This project aimed to create and test a bedside visual tool to increase parent partnership in developmentally supportive infant care after cardiac surgery. METHODS: The Care Partnership Pyramid was created by a multidisciplinary team and incorporated feedback from nurses and parents. Three Plan-Do-Study-Act (PDSA) cycles tested its impact on parent partnership in care. Information about developmentally supportive care provided by parents during each 12-hour shift was extracted from nursing documentation. A staff survey evaluated perceptions of the tool and informed modifications. RESULTS: Changes in parent partnership during PDSA 1 did not reach statistical significance. Staff perceived that the tool was generally useful for the patient/family but was sometimes overlooked, prompting its inclusion in the daily goals checklist. For PDSA 2 and 3, parents were more often observed participating in rounds, asking appropriate questions, providing environmental comfort, assisting with the daily care routine, and changing diapers. IMPLICATIONS FOR PRACTICE: Use of a bedside visual tool may lead to increased parent partnership in care for infants after cardiac surgery. IMPLICATIONS FOR RESEARCH: Future projects are needed to examine the impact of bedside care partnership interventions on parent preparedness, family well-being, and infant outcomes.

Social Risk Factors Impact Hospital Readmission and Outpatient Appointment Adherence for Children with Congenital Heart Disease.

OBJECTIVE: To examine the relations of individual and cumulative social risk factors to hospitalization outcomes and adherence to outpatient cardiology appointments within the first 2 years of life for congenital heart disease survivors. STUDY DESIGN: Data were extracted for 219 patients who underwent infant cardiac surgery with cardiopulmonary bypass. Cumulative social risk was dichotomized into high social risk (≥2 risk factors; n = 103) versus low social risk (≤1 risk factor; n = 116). The risk of morbidity by procedure was assigned from 1 to 5 (Society of Thoracic Surgeons and European Association for Cardio-Thoracic Surgery Morbidity Scores and Categories). Two-way ANOVAs examined the effects of social risk and morbidity risk on length of first surgical hospitalization, number of readmissions and readmission days, subsequent cardiac surgical interventions, and adherence to outpatient cardiology appointments. RESULTS: An interaction between social risk and morbidity risk was identified for number of readmission days, F(4, 209) = 3.07, P = .02, η2 = .06. Pairwise comparisons demonstrated that, among those patients with the lowest risk of morbidity by procedure (morbidity scores of 1 and 2), patients at high social risk had more readmission days than patients at low social risk (morbidity score 1: 16.63 ± 34.41 days vs 3.02 ± 7.13 days; morbidity score 2: 27.68 ± 52.11 days vs 2.20 ± 4.43 days). High social risk also predicted significantly worse adherence to cardiology appointments. CONCLUSIONS: Cumulative social risk impacts readmission days for patients with congenital heart disease with a low risk of morbidity by procedure. Social risk assessment can identify families who may benefit from social/behavioral interventions to optimize discharge readiness, congenital heart disease home management, and long-term outcomes.

Mothers and Fathers Experience Stress of Congenital Heart Disease Differently: Recommendations for Pediatric Critical Care.

OBJECTIVE: To inform pediatric critical care practice by examining how mothers and fathers experience the stress of caring for a young child with congenital heart disease and use hospital and community supports. DESIGN: Qualitative study of mothers and fathers of young children with congenital heart disease. SETTING: Tertiary care pediatric hospital in the Mid-Atlantic region of the United States. SUBJECTS: Thirty-four parents (20 mothers, 14 fathers) from diverse backgrounds whose child previously underwent cardiac surgery during infancy. INTERVENTIONS: Subjects participated in semi-structured, individual interviews about their experiences and psychosocial needs at the time of congenital heart disease diagnosis, surgical admission, and discharge to home after surgery. Qualitative interview data were coded, and consistent themes related to emotional states, stressors, and supports were identified. MEASUREMENTS AND MAIN RESULTS: Fathers experience and respond to the stressors and demands of congenital heart disease in unique ways. Fathers often described stress from not being able to protect their child from congenital heart disease and the associated surgeries/pain and from difficulties balancing employment with support for their partner and care of their congenital heart disease child in the hospital. Fathers were more likely than mothers to discuss support from the work environment (coworkers/managers, flexible scheduling, helpful distraction) and were less likely to describe the use of hospital-based resources or congenital heart disease peer-to-peer supports. CONCLUSIONS: This study highlights the importance of understanding the paternal experience and tailoring interventions to the unique needs of both mothers and fathers. Opportunities for critical care practice change to promote the mental health of mothers and fathers following a diagnosis of congenital heart disease are discussed.