Individualized Family-Centered Developmental Care for Infants With Congenital Heart Disease in the Intensive Care Unit

The Consortium for Congenital Cardiac Care– Measurement of Nursing Practice (C4-MNP) is an international collaborative of 45 cardiovascular programs in pediatric hospitals across the United States, Canada, and the Middle East; the collaborative’s overall aim is to identify nursing care actions for measurement in the highly complex pediatric cardiovascular patient environment.³⁶  A core activity of the C4-MNP is to establish the current state of specific pediatric cardiovascular nursing practices, identify variation, and develop recommendations to standardize practice across participating programs.³⁷  Established in 2011, the consortium includes nurses, advanced practice nurses, administrators, and scientists.^36,38 

An electronic survey of 55 multiple-choice questions was developed by using the available literature and content experts, which contributed to the survey’s face validity. Questions assessed how ICU nurses incorporate IFDC into their nursing practice and were grouped into 4 sections: respondent demographics, nursing practice, interdisciplinary practice, and parent education and support. Respondents were asked to rate their perceived competence with and frequency of participation in core IFDC nursing practices, including cue-based care and provision of a supportive environment. Participants rated perceived competency on a Likert scale: “not competent,” “a little competent,” “very competent,” and “fully competent.” Definitions for specific IFDC interventions were provided for each category. Developmentally appropriate light was defined as providing low ambient light during the day and darkness at night, and using an eye shield on the infant when light was necessary for bedside procedures. Developmentally appropriate sound was defined as sound levels equivalent to library-level conversation. Developmentally appropriate positioning was defined as positioning the infant midline, with flexed extremities, hands close to face, and with containment. Because patient acuity has been repeatedly cited in the literature as a barrier for integrating IFDC into the care of infants with CHD, the survey was designed so that nurses could report on their practice in 3 clinical scenarios; patient acuity differed in each scenario^8,20,34,35 : (1) an intubated infant who is receiving continuous sedation and chemical paralytic agents and with various catheters and tubes (high acuity), (2) an intubated infant who is not sedated or chemically paralyzed but requires various catheters and tubes (moderate acuity), and (3) an extubated infant who is ready to transition to acute care or a step-down setting (low acuity). Respondents were asked to report how frequently (“never,” “sometimes,” “often,” or “always”) IFDC interventions would be performed in each scenario.

Before disseminating the survey, C4-MNP members pilot tested it to assess the questions’ clarity and readability. The survey was moved into a database in REDCap (Research Electronic Data Capture), a secure, web-based application designed to support data capture for research and quality improvement.³⁹  Participating centers were asked to identify 1 nurse working in the pediatric ICU setting to complete the survey. Data were reviewed at the end of the collection period to ensure that only 1 survey was submitted per institution. No identifying data were collected from participants. This project was exempt from institutional review board review because it aimed to determine nursing practice across ICUs and thus was not considered human subjects research.

Survey data were collected and managed in REDCap, hosted at Boston Children’s Hospital in 2018. We used descriptive statistics to summarize responses; with the χ² test, we assessed differences in reported IFDC practices and prior IFDC-related education, which allowed us to compare practices across the 3 clinical scenarios of varying infant acuity. We used the SPSS statistical package for stratified analysis.

Of the 45 cardiovascular programs currently participating in C4-MNP, 38 were active and could participate when we released the survey. Of those 38 programs, a representative from 25 of them completed the survey, for a response rate of 66%; 21 of those participating sites (84%) were designated as pediatric cardiac ICUs. For the purposes of the project, participants were recruited from C4-MNP programs to ensure assessment of pediatric cardiac critical care nursing practice; we excluded neonatal ICUs caring for patients with CHD. Of the 25 respondents, 20 (80%) were staff nurses; the others were in unit leadership roles. Respondents had a wide range of years of experience (Table 1).

Most respondents (18 [72%]) reported that their ICUs did not have a standardized IFDC nursing guideline, though 15 (63%) reported that IFDC is incorporated into routine ICU nursing practice. Most respondents reported feeling very or fully competent to perform various general IFDC interventions including cue-based care and provision of developmentally supportive light, sound, and positioning (Figure 1). The timing of IFDC nursing practices, however, varied across ICUs (Table 2).

Only 8 institutions (33%) had an ICU guideline or policy identifying which patients with catheters and tubes were safe for parents or caregivers to hold. About half of respondents (13 [54%]) reported determining that it was safe to hold patients with catheters and tubes (regardless of type) after discussion with an attending surgeon or ICU physician, whereas 11 respondents (46%) indicated that safe holding was determined after a collaborative discussion among an interdisciplinary team consisting of the bedside nurse, a respiratory therapist, and an ICU physician. All respondents reported that their ICUs allowed holding of infants with a central venous catheter or a peripherally inserted central catheter and nasogastric or nasojejunal tubes, but not those with an open sternum or those receiving extracorporeal membrane oxygenation. Mobility varied when other devices were in place (Figure 2). Most reported that the frequency of holding is dependent on the presence of catheters and tubes (21 [88%]), parents or caregivers being present at the bedside (19 [79%]), and having time available during their shift (16 [67%]). Approximately half of respondents reported that infants are held either when they cry (11 [46%]) or when ancillary staff are available (11 [46%]).

Among respondents, 17 (71%) reported often or always using nonpharmacologic IFDC interventions such as positioning, holding by a parent, parent participation in providing comfort, and nonnutritive sucking during stressful interventions. The amount of time that IFDC interventions were used before sedation or anxiolytic medications were administered for comfort varied: less than 5 minutes (4 [17%]), 5 to 15 minutes (13 [54%]), 16 to 30 minutes (5 [21%]), or more than 30 minutes (2 [8%]). The decision to administer sedation or anxiolytic medication was based on hemodynamic instability (23 [96%]), maintaining catheter and tube integrity (22 [92%]), and pain (21 [86%]). Failed attempts at nonpharmacologic interventions (21 [86%]), consoling by bedside nurse (19 [79%]) and parents (19 [79%]), and parental stress around their infant’s inconsolability (14 [58%]) also were reported. Additional rationales for medication administration included nursing assignment/patient care ratio (8 [33%]), acuity within the unit (6 [25%]), and the time needed for cue-based assessment and IFDC (2 [8%]). During painful or stressful interventions at the bedside, respondents reported using various measures to soothe infants: sedation (23 [96%]), nonnutritive sucking with sucrose or breast milk (22 [92%]), parents’ presence (21 [86%]), IFDC positioning/holding (18 [75%]), support from a child life specialist (15 [63%]), and music therapy (12 [50%]).

Regarding documentation of IFDC nursing practice, 16 (67%) documented IFDC in the medical record. All respondents documented positioning and pain assessments; however, documentation was less consistent for light (7 [30%]), sound (7 [30%]), cue-based assessment (5 [22%]), and holding (18 [78%]). Most respondents (19 [83%]) reported documenting nonpharmacologic IFDC interventions. In addition, only 3 respondents (13%) used nurse-to-nurse communication about IFDC at shift changes.

Unit-based IFDC education for nurses during orientation (11 [46%]) was more prominent than hospital-wide IFDC education (6 [25%]). Respondents who reported that their nurse orientees receive unit-based IFDC education mentioned various methods: lecture format (6 [55%]), simulation training (2 [18%]), nursing huddles (2 [18%]), and online training (1 [9%]).

Only 7 participants (29%) reported that their ICUs had a dedicated inpatient neurodevelopmental team. Most respondents were not aware of how often neurodevelopmental assessments were performed (19 [83%]), nor whether a specific tool was used for assessment (23 [96%]). Approximately half (11 [46%]) were not aware of who performed neurodevelopmental assessments in their ICUs. Obtaining a neurodevelopmental consult was reported to be the standard of care in 8 ICUs (35%).

Only 7 (29%) respondents reported that their institutions have formal neurodevelopmental rounds in the ICUs One-third of respondents (8 [32%]) reported that neurodevelopmental concerns are presented during daily rounds. All 8 of those respondents also noted that it is the bedside nurse who presents these concerns.

More than half of participants (14 [58%]) reported that parents receive education about IFDC during their infant’s hospitalization through methods including verbal instruction (12 [86%]), hands-on/real-time instruction (6 [43%]), and video (1 [7%]). These respondents also identified different members of the health care team who educated parents: the bedside nurse (7 [50%]), a neurodevelopmental specialist (2 [14%]), a child life specialist (1 [7%]), and other professionals such as rehabilitation therapists (4 [29%]). Fewer than half of ICUs (10 [42%]) have a formal system for follow-up after discharge to support infant neurodevelopment.

Frequencies of specific IFDC practices (“often” or “always” vs “sometimes” or “never”) across the 3 clinical scenarios revealed significant differences for 11 of 14 IFDC practices. Respondents reported less frequent use of IFDC practices in the higher-acuity clinical scenarios (Table 3). Allowing holding with skin-to-skin contact was the practice provided least often across all levels of acuity.

In the high-acuity clinical scenario, we found no significant difference in the provision of IFDC based on receipt of IFDC-related education. Within the moderate-acuity scenario, IFDC-related education included in unit-based orientation significantly affected IFDC practices. Among nurses who had received IFDC-related education, 91% reported that they often or always incorporate cue-based assessment—significantly more than the 50% of nurses who did not receive IFDC-related education who reported this practice $(χ12[n=23]=4.54,P=.03)$⁠. Among that same group of nurses, 82% reported often or always promoting holding by parents or staff—again significantly more than the 39% of nurses who reported this practice but had not received IFDC-related education $(χ12[n=24]=4.61,P=.03)$⁠; 64% reported often or always letting parents assume care, also significantly more than the 23% of nurses who allowed this practice but who had not received education $(χ12[n=24]=4.03,P=.05)$ . For the low-acuity clinical scenario, 100% of nurses previously educated on IFDC reported often or always using developmentally supportive positioning (the infant placed midline or with their extremities flexed, for example); this proportion was again significantly higher than the 69% of nurses who had not been educated about IFDC and who used such positioning $(χ12[n=24]=4.06,P=.04)$⁠.

This state-of-practice assessment provides what is, to our knowledge, the first report on IFDC in current nursing practice in ICUs where infants with CHD receive care. Prior studies have highlighted variability in IFDC among interdisciplinary practice teams.^20,29  Our findings indicate that IFDC practice also varies specifically within nursing. Most respondents reported that their ICUs do not have IFDC standards or procedures to guide nursing practice, demonstrating the need for ICUs to develop guidelines and procedures to support standardization of IFDC in nursing practice. A lack of institutional and unit-based infrastructure has been cited as a barrier to providing IFDC in pediatric cardiac care settings.^17,29  Although respondents perceived a high level of competency for most IFDC practices such as developmentally supportive positioning and cue-based care, care was inconsistently operationalized across ICUs, and levels of acuity varied, indicating a gap between competency and practice. This study adds to the growing body of evidence that increased patient acuity is perceived as a barrier to providing IFDC.^20,29  The IFDC practice reported least often was supporting skin-to-skin care, even in the clinical scenario with the least acuity. One reason may be that, according to most respondents, their ICUs do not have holding guidelines. Studies have demonstrated the benefits of skin-to-skin care for infants with CHD: it promotes comfort, sleep, physiological stability, and cognitive learning.^40–43  Recent quality improvement initiatives have demonstrated the safety and feasibility of unit-based holding guidelines and promotion of skin-to-skin care.^44,45  Furthermore, skin-to-skin care is recognized as an essential intervention to support and promote breastfeeding in vulnerable hospitalized infants.^44–47  Targeting the promotion of skin-to-skin care in pediatric ICUs may be a helpful first step to increase the frequency of IFDC and its standardization in nursing practice.

Most respondents reported that nonpharmacologic comfort measures were integrated into infants’ care. The timing of and decision-making for the use of sedation/analgesic medications varied, however, as other assessments of the state of nursing practice have demonstrated.³⁷  Nurse-driven sedation protocols may standardize the use of sedation and analgesic medications.^48,49  Little research has examined the use of nonpharmacologic comfort measures and their effectiveness in reducing pain among infants after cardiac surgery; however, recent studies of massage and skin-to-skin care have demonstrated feasibility and initial evidence of pain reduction.^43,50  More research is needed to provide evidence that can inform the integration of nonpharmacologic comfort measures into nursing practice.

Fewer than one-third of respondents reported that their ICUs had dedicated inpatient neurodevelopmental teams that perform rounds, consult, or formally assess the development of infants during their stay in the ICU. Pediatric ICUs need to invest in infrastructure and systems that are required to create and support teams with expertise in infant development, formal developmental assessment, and parental mental health in order to address the complex developmental needs of this patient population and their families.^29,34,35  Like Miller et al,²⁹  we also found that documentation of neurodevelopmental assessments and the provision of IFDC practices varied, as did communication about IFDC in the shift report. Documentation challenges may be specific to the capabilities of each ICU’s electronic medical record. Standardizing IFDC documentation fields in the electronic medical record would provide ICU nurses with the ability to track IFDC throughout infants’ hospitalizations and support communication among care providers. In addition, documentation is critically needed in order to design future research linking IFDC practice with neurodevelopmental outcomes in infants with CHD.

Not all ICUs reported that new nurses receive education about IFDC, and unit-based education was more prominent than hospital-wide education. Prior IFDC-related education increased the reported frequency of IFDC practices. Formal educational programs are needed for nurses who work with this unique patient population; one has recently been described and implemented.⁵¹  Among our sample of nurses, the availability of formalized unit-based IFDC education was associated with the provision of IFDC, including cue-based assessment, safe holding, parents’ assistance in basic care, and positioning. Education provided to ICU nurses may increase the incorporation of IFDC into nursing care.⁵¹  In addition, only half of respondents reported that parents are provided education about IFDC. Parent engagement and involvement in care continues to be identified as an area for improvement across interdisciplinary neurodevelopmental teams.^20,29  Nurses can educate parents on how to read their infant’s behavioral cues and how to participate in care, even during critical illness. Respondents also reported less participation of parents in care when the infant is more critically ill. Research has shown that parents’ roles alter when they are unable to care for their infant in the ICU after cardiac surgery, resulting in stress, anxiety, and depression.^{18,19,52–58}  Engaging parents in care is a core component of IFDC that, when properly integrated, may reduce alterations in parents’ roles and support their mental health outcomes, as some ICUs have demonstrated.^53,54,58 

The design of this project, which used a self-report survey, has inherent limitations. Practice of IFDC was not measured objectively at each site, and so the results should be interpreted with caution. Levels of acuity were not chosen on the basis of any specific standard measure. We did, however, attempt to capture, on the basis of our collective clinical experience, 3 general levels that may influence nurses’ approach to IFDC. We designed our survey by synthesizing the literature and incorporating expert opinion, giving it face validity, but we did not assess its reliability. Future studies could use formally developed instruments such as the quality of developmental care scale.⁵⁹  Only 1 respondent from each participating ICU completed the survey. We acknowledge that practice may vary within and across ICUs, so this may have influenced our results.

This assessment of the state of nursing practice demonstrates that some IFDC practices are currently being incorporated into the care of infants with CHD in ICUs, but practice varies. Development of IFDC guidelines, nursing education, and nursing documentation of IFDC are areas that should be targeted in order to optimize neurodevelopmental outcomes. Future work will aim to convene a C4-MNP working group to implement IFDC guidelines across pediatric critical care settings, identify and implement IFDC initiatives for testing across programs, and further develop quality measures for future benchmarking that assesses compliance and the impact of IFDC on this patient population.

This project was supported by the Consortium for Congenital Cardiac Care–Measurement of Nursing Practice (C4-MNP), the Department of Cardiovascular and Critical Care Nursing at Boston Children’s Hospital, and the Nursing Science Fellowship at Boston Children’s Hospital.