Congenital heart disease (CHD) is the most common birth defect, impacting 9 per 1000 live births.1 Twenty-five percent of infants born with CHD will need cardiac surgery or other interventions to survive, often within the first weeks or months of life.2 Following surgery, these infants require intensive care including mechanical ventilation, sedation, and at times mechanical circulatory support. This time can be extraordinarily stressful for parents, characterized by disruptions to normative parenting roles.3 In addition, this is a vulnerable period for infant brain development during which important behaviors and developmental milestones would normally be achieved. As infants progress from critical illness to the transition to home, there can exist a tension between the goals of surgical recovery and the importance of supporting parents in providing safe and developmentally appropriate care for their infant.
Prior to the initiation of this project, inconsistency was noted in the timing and amount of support parents received regarding developmentally supportive care for their infant within our pediatric cardiac intensive care unit (CICU). Upon admission and during the immediate postoperative period, parents were often advised to remain “hands-off” for fear that excess stimulation could be detrimental to the infant's health and were provided with little guidance on what they could do to support their critically ill infant. As the infant's health status and stability improved, support and education for parents to become active in care (ie, diaper changes, holding, and developmentally appropriate stimulation) varied shift to shift at the discretion of the nurses and medical providers caring for the patient. Qualitative interviews conducted between 2015 and 2016 with 20 mothers and 14 fathers whose infants had previously been cared for in our CICU indicated that parents often felt unsure of how and when they could care for and comfort their infant in the CICU.4 Both mothers and fathers described alterations to the normative parenting roles in the CICU as a substantial source of stress. Parents also reported feeling unprepared to care for their infant upon transfer to the step-down unit or discharge to home and described fear that they may unintentionally hurt their infant when providing care.
Consistent with our local experience, the field of pediatric cardiac critical care has historically focused on surgical recovery and survival. However, a vast majority of patients with CHD are now surviving due to medical and surgical advances,5 and attention has extended to other important patient and family outcomes. Infants who have had cardiac surgery are at high risk for long-term neurodevelopmental and behavioral impairments.6,7 While the causes are multifactorial, longer length of CICU stay during infancy is consistently associated with worse neurodevelopmental and behavioral outcomes.6 Additionally, parents of infants with CHD frequently experience anxiety, depression, and traumatic stress,8 and parent mental health problems have been found to be associated with increased adverse behavioral and quality-of-life outcomes for patients with CHD.8–11 Limited opportunities to perform typical parenting tasks and feelings of helplessness within the CICU are known to contribute to parent mental health challenges.3,4
For preterm infants in the neonatal intensive care unit (NICU), individualized family-centered developmental care such as the Newborn Individualized Developmental Care and Assessment Program12 is the gold standard for promoting optimal neurobehavioral development, family involvement, and parent–infant bonding through interventions designed to minimize stress and maximize neurologic development.13 Developmental care interventions are individualized to the needs of the infant through developmentally supportive parent-driven approaches designed to meet the needs of the particular infant within the context of the environment and his or her family. Within CICUs, however, individualized family-centered developmental care is a more recent framework and is not yet implemented consistently for infants recovering from cardiac surgery.14 To our knowledge, the first article to describe a developmental model of care for infants in the CICU was published in 2012.15 This model, which included 5 core measures to support developmental care practices (infant positioning, infant feeding, infant pain management, parental stress, and family-centered care), was informed by evidence-based developmental care practices in the NICU but adapted for infants recovering from cardiac surgery. Although there are some similarities between infants born with CHD and infants born preterm, there are also fundamental differences that could inform developmentally supportive interventions.16 Most infants with CHD are born full-term or late preterm and struggle with recovery following cardiac surgery in addition to difficulties with growth and development.16 While some patients undergo cardiac surgery immediately after birth, others are scheduled for surgery weeks or months later. Time spent in the CICU recovering from cardiac surgery can be lengthy and during a development stage when infants would otherwise be held, exposed to familiar sounds and voices, and encouraged to explore their environment, and when parents would otherwise provide care, comfort, and opportunities for play.17
In the NICU, interventions to promote family-centered developmental care for preterm infants have been shown to increase nurse competency and comfort in infant transfer for kangaroo care,18 maternal sensitivity to infant behaviors and stress responses,19 and high-frequency exclusive human milk feeding at discharge.20 In the pediatric intensive care unit (PICU) and other pediatric services, strategies to promote family-centered rounding have been shown to improve communication and family engagement during rounds.21,22 Over the last several years, tools to promote family-centered developmental care and family-centered rounding in the pediatric CICU have been developed, including a developmental care card on which parents and nurses record information about the infant's preferences for comfort behaviors and positioning15 and a “family participation bundle” involving written information and verbal reminders about family-centered rounding and a bedside tool for parents to communicate desire to participate in rounds.23 To our knowledge, a visual tool that could be utilized routinely at the bedside to promote parent partnership in developmentally supportive care for full-term or late preterm infants with CHD throughout their recovery from cardiac surgery had not yet been developed or tested.
What This Study Adds
- Description of a new bedside visual tool to promote parent partnership in developmentally supportive care for infants in the cardiac intensive care unit.
- Preliminary data indicating that the use of a bedside visual tool displaying options for safe and developmentally supportive activities based on the infant's current condition may lead to increased parent partnership in care for infants with congenital heart disease.
- Discussion of future investigations needed to evaluate the impact of care partnership tools/interventions on parent, family, and infant outcomes.
To address this identified gap, a bedside visual tool that displays options for safe and developmentally supportive activities based on the infant's condition in real time was created and tested. The creation of this tool and the selected measures were informed by the family-centered developmental care framework adapted to match the needs of full-term or late preterm infants with CHD,15,16 and the Pediatric Cardiac Intensive Care Unit Parental Stress Model,24 which highlights the importance of parental role alteration and aspects of the CICU environment for parental stress in the critical care setting. The framework of care partnership,25 in this context referring to the complementary and equally important roles of parents and staff in the care of an infant in the CICU, also guided the rationale for this project. While prior quality improvement and research initiatives have aimed to promote parent partnership in developmentally supportive care for preterm infants in the NICU and children in the PICU,18–21 this project aimed to contribute to the small literature describing strategies to improve parent partnership in the developmental care of infants recovering from cardiac surgery.
The aims of this quality improvement project were to (1) create a bedside visual tool to promote parent partnership in developmentally supportive infant care in the CICU (Care Partnership Pyramid) and (2) test the impact of this tool on parent partnership in care for infants with CHD. We hypothesized that rates of parent partnership in care in the CICU would be low prior to the use of this tool, and that this tool would result in increased partnership in care. Although the Care Partnership Pyramid was used for all children 3 years and younger, this project focused on infants younger than 12 months, as this period corresponds with the first and often lengthiest exposure to the CICU for patients with critical forms of CHD.
This project was conducted within a 14-bed dedicated pediatric CICU in the Mid-Atlantic region of the United States. Areas for quality improvement were developmental care and parent partnership, as identified by medical and nursing leadership. This prompted the creation of 2 respective multidisciplinary committees comprised of pediatric critical care nurses, physicians, acute care therapists (physical, occupational, and speech/feeding), and psychosocial staff (social work, psychology, and child life). These committees then met on a monthly basis. Daily brief huddles within the CICU led by nursing with involvement from physicians and mid-level providers focused on optimizing communication regarding processes and quality initiatives and identifying problems and solutions early and efficiently. Additionally, CICU leadership and staff participated in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), which provided a forum for sharing ideas for quality improvement and obtaining feedback from providers, parents, and patients across multiple institutions.
The Care Partnership Pyramid was designed as a tool to promote parent partnership in developmentally supportive infant care in the CICU. An iterative process of design and refinement, incorporating feedback from CICU leadership, bedside nurses, and parents, was used to create this tool. The Care Partnership Pyramid started as an idea between 2 bedside nurses as a way to improve parent partnership in CICU care. This idea was brought to the Developmental Care Committee, which included acute care therapists with over a decade of experience working with critically ill infants in the CICU and NICU. This multidisciplinary team created the visual tool and drafted the included language over a 1-hour meeting. The Care Partnership Pyramid was then presented to nursing and medical staff at daily huddles and shared with 3 families whose infants had been admitted to the CICU and had spent considerable time on the unit. After refining the tool based on local staff and family feedback, the Care Partnership Pyramid was presented to healthcare providers and parent stakeholders from multiple centers through an NPC-QIC webinar and 2 in-person presentations and was further refined based on feedback.
Figure 1 displays the current version of the Care Partnership Pyramid. The apex of the pyramid (purple) offers techniques for families to safely provide support to their extremely fragile infant. The next level (green) offers options for families whose infant may still be critically ill though less reactive to stimulation, but remains attached to many invasive lines and tubes that would become dangerous if accidentally dislodged. The third level from the top (yellow) is intended for an infant who is considered stable and may have 1 or 2 invasive lines or tubes that prevent the family from being independent with care. Lastly, the lowest level (blue) is for the infant who is stable, has few lines, and for whom the family can be relatively independent with care. To encourage partnership in care, descriptions and examples of care that parents can provide rather than restrictions were used. First-person language was utilized, as if from the infant's perspective, to highlight that these practices are intended to meet the developmental and health needs of the infant. An equal number of directions/suggestions for each level of the pyramid were included. In recognition of the dynamic nature of physiology in the critical care environment, the phrase “ask my nurse” was included to account for changes in patient condition, which may have occurred since assigning acuity level.
The Care Partnership Pyramid (available in English and Spanish) was printed, laminated, and hung on the magnetized dry erase welcome board at the bedside for use by the family and care team. An infant-shaped marker attached to the tool with Velcro denoted the infant's current level within the pyramid. The family was oriented to the tool upon CICU admission by nursing staff and encouraged to provide the cares at their infant's current level within the pyramid in addition to those at the levels above. It was explained that the Care Partnership Pyramid is a fluid model in that some days the infant needs more rest and quiet than others, and that the goal of the care team is to support parents in providing safe and developmentally appropriate care. The infant-shaped marker was moved by the nurse during daily rounds following discussion among the nurse, care team, and family. This discussion often prompted education on the infant's current state of disease and care plan, particularly in the case of an infant not progressing through the pyramid or moving up the pyramid indicating the need for less stimulation.
Study of the Intervention
This quality improvement project used 3 Plan-Do-Study-Act (PDSA) cycles to test the impact of the Care Partnership Pyramid on parent partnership in care within a pediatric CICU. For each PDSA cycle, impact of the intervention was assessed by extracting nursing documentation regarding the specific cares provided by parents during each 12-hour shift. A CICU staff survey was distributed during the first PDSA cycle to evaluate staff perceptions of the tool and to inform modifications for the next cycle. This project followed the steps for initiating an interdisciplinary critical care quality improvement program published by the Society of Critical Care Medicine Outcomes Task Force.26 Revised Standards for Quality Improvement Reporting Excellence (SQUIRE 2.0) guided the preparation of this report.27 This project was reviewed by the institutional review board and deemed a quality improvement project.
Nursing Documentation on Parent Partnership in Care
The template for the nursing progress note (completed once per 12-hour shift) in the Epic electronic medical record (EMR) was modified to include parent partnership in care, allowing nurses to select what type of communication they had with the family, who was present, and what cares were completed by parents during the shift. The duration of the family's time spent at the bedside was not included, as it was felt the quality of the time spent at the bedside was more important than quantity. Data on parent partnership in care were extracted from nursing progress notes for 1 month prior to intervention (November 2016; baseline), 1 to 2 months after intervention (December 2016 to January 2017; PDSA cycle 1), 6 to 7 months and 8 to 9 months after intervention (May to June 2017 and July to August 2017; PDSA cycle 2), and 13 to 14 months and 17 to 18 months after intervention (December 2017 to January 2018 and April to May 2018; PDSA cycle 3). Specific outcome measures were (1) participating in rounds, (2) asking appropriate questions, (3) providing environmental comfort, (4) providing developmentally appropriate stimulation, (5) changing diapers, (6) assisting with daily care routine, and (7) holding infant. Measures were selected based on theoretical models and prior research to highlight altered parental roles in the CICU and the importance of engaging parents in daily rounds and supporting parents to perform developmentally appropriate care.3,4,23,24 Oral feeding was not included as an outcome measure, as many infants with CHD do not feed orally while in the CICU. However, assisting with the feeding routine is one way that parents can assist with the daily care routine.
An electronic survey was created and distributed to staff in the CICU (registered nurses, advance practice nurses, and physicians; approximately 50 staff members total) after 2 months of intervention (February 2017). The survey consisted of 2 primary questions (“How useful do you think this tool is for the care of the patient?” and “How useful do you think this tool is for the family?”) rated on a 5-point Likert scale from “not at all useful” to “extremely useful” and a third optional field for additional comments. Staff were given 30 days to complete the survey.
Percentages of shifts for which each care partnership activity occurred were calculated from nursing progress notes containing the templated parent partnership documentation, and only for infants younger than 12 months. Statistically significant differences between time points were identified using the Z test for 2 population proportions. Staff survey results were analyzed using descriptive statistics and reported as percentages endorsed.
Completeness of Data
The number of patient charts from which data were extracted varied based on unit census, ranging from 15 to 30 charts at each time point (126 patient charts total). Nursing compliance with documentation regarding parent partnership in care was low at baseline (44% of 386 shifts) and through the first (50% of 552 shifts) and second PDSA cycles (43% of 991 shifts, 52% of 1095 shifts), and was therefore a focus of improvement for the third PDSA cycle.
As hypothesized, rates of parent partnership in care were relatively low at baseline (Table 1). Only 8% of available documentation on parent partnership described parents assisting with the daily care routine or changing diapers, with other parent partnership variables ranging from 13% (participating in rounds) to 65% (asking appropriate questions) at baseline.
PDSA cycle 1 (SMART [Specific, Measureable, Achievable, Realistic and Timely] aim: To increase parent partnership in care by 20% of baseline rates within the first 2 months of implementing the Care Partnership Pyramid).
TABLE 1. -
Parent Partnership in Care Across Time Pointsa
||Significant Differences (P < .05)
||Corresponding Z Scores
Total shifts documented
n = 168
n = 276
n = 421
n = 569
n = 223
n = 370
|Participating in rounds
||n = 22 (13%)
||n = 49 (18%)
||n = 99 (24%)
||n = 142 (25%)
||n = 59 (26%)
||n = 139 (38%)
||T6 > T5/T4/T3/T2/T1
T5 > T2/T1
T4 > T2/T1
T3 > T1
Z = 2.78/Z = 4.12/Z = 4.3/Z = 5.48/Z = 5.74
Z = 2.35/Z = 3.23
Z = 2.35/Z = 3.25
Z = 2.83
||n = 109 (65%)
||n = 189 (68%)
||n = 300 (71%)
||n = 353 (62%)
||n = 167 (75%)
||n = 275 (74%)
||T6 > T4/T1
T5 > T4/T1
Z = 3.91/Z = 2.25
Z = 3.43/Z = 2.15
||n = 31 (18%)
||n = 68 (25%)
||n = 129 (31%)
||n = 209 (37%)
||n = 91 (41%)
||n = 145 (39%)
||T6 > T3/T2/T1
T5 > T3/T2/T1
T4 > T3/T2/T1
T3 > T1
Z = 2.52/Z = 3.89/Z = 4.75
Z = 2.59/Z = 3.85/Z = 4.72
Z = 2.00/Z = 3.51/Z = 4.44
Z = 3.00
||n = 36 (21%)
||n = 67 (24%)
||n = 98 (23%)
||n = 150 (26%)
||n = 59 (26%)
||n = 104 (28%)
||n = 13 (8%)
||n = 32 (12%)
||n = 72 (17%)
||n = 162 (28%)
||n = 56 (25%)
||n = 76 (21%)
||T6 < T4
T6 > T2/T1
T5 > T3/T2/T1
T4 > T3/T2/T1
T3 > T2/T1
Z = 3.01/Z = 3.70
Z = 2.42/Z = 3.94/Z = 4.46
Z = 4.16/Z = 5.47/Z = 5.55
Z = 2.00/Z = 2.92
|Assisting with care routine
||n = 14 (8%)
||n = 19 (7%)
||n = 48 (11%)
||n = 129 (23%)
||n = 38 (17%)
||n = 70 (19%)
||T6 > T3/T2/T1
T5 > T3/T2/T1
T4 > T3/T2/T1
T3 > T2
Z = 2.96/Z = 4.39/Z = 3.13
Z = 2.00/Z = 3.55/Z = 2.51
Z = 4.58/Z = 5.66/Z = 4.13
Z = 1.98
||n = 24 (14%)
||n = 42 (15%)
||n = 47 (11%)
||n = 85 (15%)
||n = 31 (14%)
||n = 38 (10%)
||T6 < T4
aT1 = baseline (November 2016), T2 = 1 to 2 months after intervention (December 2016 to January 2017; PDSA1), T3 = 6 to 7 months after intervention (May to June 2017; PDSA 2), T4 = 8 to 9 months after intervention (July to August 2017; PDSA 2), T5 = 13 to 14 months after intervention (December 2017 to January 2018; PDSA 3), and T6 = 17 to 18 months after intervention (April to May 2018; PDSA 3).
Parent partnership data from nursing documentation were examined for the first 2 months of implementation. The SMART aim was achieved for the outcomes of participating in rounds (38% increase), providing environmental comfort (39% increase), and changing diapers (50% increase), but not for other outcomes. Differences in care partnership as compared with baseline did not reach statistical significance (Table 1).
Twenty-six CICU staff responded to an electronic survey assessing staff perspectives of the tool (16 bedside nurses, 6 advance practice nurses, and 4 physicians; approximately 50% response rate). Feedback was mostly positive, with 77% indicating that the tool was useful, very useful, or extremely useful for the care of the patient, and 88% indicating that the tool was useful, very useful, or extremely useful for the family (Figure 2). No respondents described negative impacts of the tool. Several respondents noted that the tool was sometimes overlooked, as it was not included in the cardiac daily goals checklist (DGC), an EMR flow sheet used during bedside rounds to document goals for that shift.
PDSA cycle 2 (SMART aim: To increase parent partnership in care by 20% of PDSA 1 rates within the first 2 months of modifying the DGC and by 25% of PDSA 1 rates over the subsequent 2 months).
Based on results of the first PDSA cycle, including staff survey results, the DGC was modified to include the infant's current level on the Care Partnership Pyramid. Data were examined at 2 time points: 6 to 7 and 8 to 9 months after intervention. The SMART aim was achieved for the outcomes of participating in rounds (33% increase at 6-7 months, 39% increase at 8-9 months), providing environmental comfort (24% and 48% increase, respectively), changing diapers (42% and 133% increase, respectively), and assisting with daily care routine (57% and 229% increase, respectively) (Figure 3), and improvements over time on these outcomes reached statistical significance. The other 3 outcomes did not exhibit meaningful change over time. Results across time points and corresponding statistics are displayed in Table 1.
PDSA cycle 3 (SMART aim 1: To increase compliance with nursing documentation by 25% of PDSA 2 compliance rates within the first 2 months of educational intervention and by 50% of PDSA 2 compliance rates 5-6 months later; SMART aim 2: To maintain prior gains in parent partnership in care with improved documentation compliance).
Low nursing compliance with documentation regarding parent partnership in care was the focus of the third PDSA cycle, as this prevented the team from evaluating the full impact of the tool due to missing data. Educational materials about the Care Partnership Pyramid and the importance of completing documentation regarding parent partnership in care every shift were distributed to the nursing staff via email. Education regarding the importance of proper documentation for this specific project as well as for the care of the patient and family continued at daily nursing huddles for a period of 3 weeks and then periodically over the next 6 months. The SMART aim was achieved, as documentation increased to 72% of 308 shifts at 13 to 14 months after intervention (38% increase) and to 79% of 470 shifts at 17 to 18 months after intervention (52% increase). Results regarding the impact of the Care Partnership Pyramid were generally maintained with increased completeness of data, and further improvements were observed for the outcomes of participating in rounds and asking appropriate questions at the 17- to 18-month time point as compared with the 8- to 9-month time point. However, parent partnership for changing diapers and holding the infant was significantly less frequent at the 17- to 18-month time point as compared with the 8- to 9-month time point (Table 1).
Despite growing recognition of the need for family-centered developmental care for infants with CHD,3,4,15,16 support for parents to provide developmentally appropriate care for their infant remains inconsistent within and across CICUs.14 Results of this project suggest that the use of a bedside visual tool displaying options for safe and developmentally supportive activities may lead to increased parent partnership in care. This project contributes to the small literature describing strategies to improve parent partnership in the care of infants recovering from cardiac surgery.15,23
Three of the 5 variables with evidence of improvement were forms of care that parents can provide even when their infant is extremely fragile (participating in rounds, asking appropriate questions, and providing environmental comfort). Parent participation in CICU rounds has been a focus of prior publications and may be particularly amenable to improvement following staff education and communication with parents about the purpose of bedside rounds and the family's role.23 The Care Partnership Pyramid may serve as a cue regarding the types of care parents can provide when their infant is extremely fragile and may reinforce the concept that nurses do not have to wait until the infant is stable to support parents to partner in care.
Rates of parental assistance with the daily care routine and changing diapers were low at baseline, but improved during the second PDSA cycle. Parent partnership in these “hands-on” activities often requires education by staff, as well as support to overcome parental fear of unintentionally hurting the infant,4 both of which could have improved with the use of this tool. Unfortunately, rates of parental holding remained low throughout the project period and were significantly reduced during the third PDSA cycle as compared with the second cycle. Holding often requires nursing assistance and may trigger even more fear in parents without ongoing encouragement and support from staff.4 Additionally, some staff may be uncomfortable supporting parents in physical care activities, such as holding, as knowledge alone may not translate to behavior change. Many CICUs do not have a formal policy for infant holding or formal staff training on how to optimally support parents to hold their critically ill infant.14 A bedside tool may be not sufficient to change practice in this area, and specific policies and formal training on how and when to support parents in holding their fragile infant are likely needed.
Another activity that did not evidence change during the project period was parental provision of developmentally appropriate stimulation. Improvements in this area would require easy access to developmentally appropriate toys and books, parent comfort with singing and reading to the infant in front of staff, and knowledge of what is developmentally appropriate. While child life specialists often provide families with select developmental items, infection control guidelines limit the extent to which toys can be borrowed or shared. Further, nursing education may not provide nurses with a comprehensive understanding of appropriate developmental stimulation for critically ill infants or how to support and educate parents in providing this stimulation. This is an area in need of improvement in the CICU, as prior research has demonstrated the importance of exposure to language for infants in the intensive care setting.28
Nurse documentation on parent partnership was inconsistent throughout the first 2 PDSA cycles (43%-52% of shifts), which could impact the validity of results. It may be that nurses who did not routinely document on parent partnership also did not use the Care Partnership Pyramid routinely. Documentation compliance improved during the third PDSA cycle with increased staff education (72%-79% of shifts), and prior gains were generally maintained. The reliance on nursing documentation for assessment of outcomes may also limit validity, as changes over time could reflect a shift in documentation practices due to greater awareness of activities that fall within the broad category of family-centered developmental care. It could be argued, however, that greater awareness among nurses is a positive outcome in itself.
Further Considerations/Next Steps
The results of this project highlight several next steps to further refine and test the use of the Care Partnership Pyramid. Hands-on staff training and informal bedside education in developmental care are needed to educate staff on how to support parents in providing physical care and developmentally appropriate stimulation for their infants. Training could include how to support parents in understanding their infant's behaviors and stress signals and in providing individualized support and care based on the infant's responses. Staff with competencies in these areas could be identified as champions on each shift to teach and promote use of these skills.
With increased staff knowledge and comfort in individualized developmental care approaches, the Care Partnership Pyramid could be refined and tested with another PDSA cycle. It will be important for a certified Infant Developmental Specialist to be involved with the next iteration of the tool to help shape the included language and activities to ensure a focus on individualized rather than protocol-driven care, to promote physical contact and comfort activities even in the most fragile infants (eg, containment holding, appropriate touch), and to facilitate optimal partnership with parents. In particular, the language of “ask the nurse” may need to be revisited to ensure consistency with the philosophy of developmentally supportive interactions with parents. Parents could also be surveyed on their perceptions regarding care partnership in the CICU, with results informing staff training needs and future refinements to the Care Partnership Pyramid. Strategies to further engage parents in the use of the Care Partnership Pyramid could also be tested, such as introducing the tool to parents prior to the birth of their infant with CHD (eg, during the prenatal tour of the CICU, through the high-risk obstetrician) or preoperatively for infants diagnosed after birth.
Anecdotal observations suggest that potential mechanisms of action of the Care Partnership Pyramid include increased staff awareness of family-centered developmental care approaches, improved communication between staff and parents about how parents can partner in their infant's care, and enhanced education and support for parents to partner in care. However, these potential mechanisms have not been directly studied and could be examined in future PDSA cycles. Similarly, although negative events related to parent partnership in care did not appear to increase after this tool was introduced into the CICU and staff did not describe any negative impacts of this tool on the staff survey, direct evaluation of balancing measures is needed through future PDSA cycles. The care partnership outcomes included in this study are important to the extent that they are associated with improved parent, family, and infant outcomes. A future project could examine the impact of the Care Partnership Pyramid on parental self-efficacy, preparedness, and emotional health, family well-being, and infant medical and developmental outcomes. Lastly, the extent to which the Care Partnership Pyramid is broadly applicable to critically ill infants and their families, including those in the NICU and PICU, could be evaluated by adapting and testing this tool across intensive care units.
We would like to thank all members of the Nemours cardiac developmental care team, the Nemours cardiac inpatient services working group, and the Family CaRes Learning Lab of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) for their contributions to and support of the Care Partnership Pyramid.
1. van der Linde D, Konings EE, Slager MA, et al. Birth prevalence of congenital heart disease
worldwide: a systematic review and meta-analysis. J Am Coll Cardiol. 2011;58(21):2241–2247.
2. Oster ME, Lee KA, Honein MA, Riehle-Colarusso T, Shin M, Correa A. Temporal trends in survival among infants with critical congenital heart defects. Pediatrics. 2013;131(5):e1502–e1508.
3. Lisanti AJ, Allen LR, Kelly L, Medoff-Cooper B. Maternal stress and anxiety in the pediatric cardiac intensive care unit
. Am J Crit Care. 2017; 26:118–125.
4. Sood E, Karpyn A, Demianczyk AC, et al. Mothers and fathers experience stress of congenital heart disease
differently: recommendations for pediatric critical care. Pediatr Crit Care Med. 2018;19(7):626–634.
5. Best KE, Rankin J. Long-term survival of individuals born with congenital heart disease
: a systematic review and meta-analysis. J Am Heart Assoc. 2016;5(6).
6. Wernovsky G, Licht D. Neurodevelopmental outcomes in children with congenital heart disease
—what can we impact? Pediatr Crit Care Med. 2016;17(8, suppl 1):S232–S242.
7. Newburger JW, Sleeper LA, Bellinger DC, et al. Early developmental outcome in children with hypoplastic left heart syndrome and related anomalies: The Single Ventricle Reconstruction Trial. Circulation. 2012;125(17):2081–2091.
8. Woolf-King SE, Anger A, Arnold EA, Weiss SJ, Teitel D. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc. 2017;6(2).
9. Wei H, Roscigno CI, Hanson CC, Swanson KM. Families of children with congenital heart disease
: a literature review. Heart Lung. 2015; 44:494–511.
10. DeMaso DR, Labella M, Taylor GA, et al. Psychiatric disorders and function in adolescents with d-transposition of the great arteries. J Pediatr. 2014;165(4):760–766.
11. Ernst MM, Marino BS, Cassedy A, et al. Biopsychosocial predictors of quality of life outcomes in pediatric congenital heart disease
. Pediatr Cardiol. 2017;39(1):79–88.
12. Als H. Program Guide—Newborn Individualized Developmental Care and Assessment Program (NIDCAP): An Education and Training Program for Health Care Professionals. Boston, MA: Children's Medical Center Corporation; 1986. Updated January 8, 2019.
13. Craig JW, Glick C, Phillips R, Hall SL, Smith J, Browne J. Recommendations for involving the family in developmental care of the NICU baby. J Perinatol. 2015;35(suppl 1):S5–S8.
14. Sood E, Berends WM, Butcher JL, et al. Developmental care in North American pediatric cardiac intensive care units: survey of current practices. Adv Neonatal Care. 2016;16(3):211–219.
15. Torowicz D, Lisanti AJ, Rim JS, Medoff-Cooper B. A developmental care framework for a cardiac intensive care unit
: a paradigm shift. Adv Neonatal Care. 2012;12(suppl 5):S28–S32.
16. Lisanti A, Vittner D, Medoff-Cooper B, Fogel J, Wernovsky G, Butler S. Individualized family-centered developmental care
: an essential model to address the unique needs of infants with congenital heart disease
. J Cardiovasc Nurs. 2019;34:85–93.
17. Kaplan-Sanoff M. Stimulating environments. In: Jellinek M, Patel BP, Froehle MC, eds. Bright Futures in Practice: Mental Health—Volume II. Tool Kit. Arlington, VA: National Center for Education in Maternal and Child Health; 2002.
18. Hendricks-Munoz KD, Mayers RM. A neonatal nurse training program in kangaroo mother care (KMC) decreases barriers to KMC utilization in the NICU. Am J Perinatol. 2014;31(11):987–992.
19. Milgrom J, Newnham C, Martin PR, et al. Early communication in preterm infants following intervention in the NICU. Early Human Dev. 2013;89(9):755–767.
20. O'Brien K, Robson K, Bracht B, et al. Effectiveness of family integrated care in neonatal intensive care units on infant and parent outcomes: a multicentre, multinational, cluster-randomised controlled trial. Lancet Child Adolesc Health. 2018;2(4):245–254.
21. Bogue TL, Mohr L. Putting the family back in the center: a teach-back protocol to improve communication during rounds in a pediatric intensive care unit. Criti Care Nurs Clin. 2017;29(2):233–250.
22. Cox ED, Jacobsohn GC, Rajamanickam VP, et al. A family-centered rounds checklist, family engagement
, and patient safety: a randomized trial. Pediatrics. 2017;139(5).
23. Blankenship A, Harrison S, Brandt S, Joy B, Simsic JM. Increasing parental participation during rounds in a pediatric cardiac intensive care unit
. Am J Crit Care. 2015;24:532–538.
24. Lisanti AJ, Golfenshtein N, Medoff-Cooper B. The pediatric cardiac intensive care unit
parental stress model: refinement using directed content analysis. Adv Nurs Sci. 2017;40(4):319–336.
25. American Hospital Association. The Patient Care Partnership
: Understanding Expectations, Rights, and Responsibilities. Chicago, IL: American Hospital Association; 2003.
26. Curtis JR, Cook DJ, Wall RJ, et al. Intensive care unit quality improvement: a “how-to” guide for the interdisciplinary team. Crit Care Med. 2006;34(1):211–218.
27. Ogrinc G, Davies L, Goodman D, Batalden P, Davidoff F, Stevens D. Squire 2.0 (Standards for Quality Improvement Reporting Excellence): revised publication guidelines from a detailed consensus process. Am J Crit Care. 2015;24(6):466–473.
28. Caskey M, Stephens B, Tucker R, Vohr B. Adult talk in the NICU with preterm infants and developmental outcomes. Pediatrics. 2014; 133(3):e578–e584.