Infants born with congenital heart disease (CHD) experience dramatically improved survival as a result of advances in CHD recognition, surgical techniques, and perioperative management; it is now expected that up to 85% of children with CHD will survive to adulthood.1 Improved survival has led to the recognition of developmental delays in many infants and children with CHD. There is a spectrum of these delays, including cognitive, fine and gross motor skills, executive functioning, language and visual processing, attention, and psychosocial development delays.1 These delays are more prevalent and severe in those with more complex CHD, related in part to an increased incidence of comorbid conditions and need for complex intervention during the developmentally sensitive neonatal period.1 The American Heart Association developed guidelines for ongoing neurodevelopmental screening and referral for all infants and children with CHD; these guidelines were endorsed by the American Academy of Pediatrics, but consistent implementation of these guidelines has been problematic.1,2Over the past several years, interest in incorporating care measures that support neurodevelopment and family-centered care has intensified within the interdisciplinary specialty of pediatric cardiac care, although there is currently very little empirical evidence to support the efficacy of these practices in this population. The clinical nurse specialist (CNS) is an expert in nursing practice who affects 3 spheres of impact—patients and families, nurses and nursing practice, and organizations and systems—through clinical practice, consultation, collaboration, education, research/evidence-based practice, systems leadership, and ethics/moral agency/advocacy.3,4 With this expertise and focus, the CNS is uniquely qualified to lead the implementation of developmentally supportive care practices and to evaluate and document the effects of these practices on outcomes in this at-risk population. The purpose of this column is to describe the role of the CNS in integrating and evaluating individualized family-centered developmental care (IFDC) into the care of infants and children with CHD.Developmental care originated in the 1980s for preterm infants in the neonatal intensive care unit (NICU) as a systems model to describe the preterm infant’s relationships and interactions with the NICU environment, with a goal to achieve the developmental milestone of self-regulation.5-7 Care components and outcomes measures were further refined into a program called the Newborn Individualized Developmental Care and Assessment Program, which guides the care of premature infants in the NICU.8 Developmental nursing care measures include promotion of a healing environment with regulation of light and sound, positioning and handling that supports physiological developmental needs, protected sleep, and promotion of family-centered care through parent partnership and skin-to-skin holding.7 Outcomes of developmental care in the NICU have included fewer mechanical ventilation days, earlier time to oral feeding, and improved short-term developmental outcomes.7Fundamental differences between preterm infants and infants with CHD preclude the direct transfer of IFDC practices from the NICU to the pediatric cardiac intensive care unit (CICU). For example, most neonates with critical CHD are not born significantly pre-maturely, and the mechanisms of neurologic injury differ between the 2 groups. Infants with CHD have typically been excluded from NICU studies on the effects of IFDC because of their hemodynamic instability or comorbid abnormalities. IFDC in pediatric cardiac care has been recently defined through concept analysis,9 and pediatric cardiac centers have reported varying interest and success in implementing IFDC.10-13The 2018 CNS Census undertaken by the National Association of Clinical Nurse Specialists revealed that 8.5% of CNSs worked with a pediatric population, 70% of CNSs worked in an inpatient hospital setting, and the most common CNS daily activities included consultation, staff education, providing or assisting with direct patient care, leading and assisting with evidence-based-practice projects, and providing patient or family education.14Outcomes of CNS practice relevant to IFDC in the patient/family sphere include patient/family satisfaction, quality of life, functional status, time to achieve oral feeding, and measures of patient/family stress and anxiety. Outcomes relevant to IFDC in the nurses/nursing sphere include job satisfaction and retention, whereas outcomes in the system/organization sphere include length of stay and hospital cost.15,16 CNS role activities vary with different state Nurse Practice Acts as well as organizational definitions of the CNS role; some CNSs practice in direct care roles focused on diagnosing and managing health conditions, whereas others practice in more indirect roles such as unit-based roles, quality improvement, or case management. As an expert clinician whose direct and indirect patient care activities influence patient and family outcomes, the CNS is the natural leader to implement innovative patient care, promote nursing excellence, and evaluate outcomes at the patient/family and systems level. On the basis of these potential outcomes and CNS role activities, we offer the following recommendations to improve care in the CHD population.One foundational practice for integrating IFDC practices into the care of critically ill infants is developmental care rounds. Developmental care rounds are a type of interdisciplinary team intentional rounding to identify the patient’s developmental status and parental concerns related to developmental progress. These rounds are helpful in designing and implementing a developmental plan with input from nurses, doctors, physical and occupational therapists, speech-language pathologists, lactation consultants, and other team members.10,17Clinical expertise allows the CNS to understand how the infant’s complex physiological status and potential for instability may influence and determine which types of developmentally supportive interventions are appropriate at that particular time. This expertise also enables the CNS to identify infants at highest risk for developmental delay. Although it is not appropriate to perform formal developmental testing in the inpatient setting, the CNS can perform developmental history and screening with the infant’s caregivers to identify potential problem areas and parental concerns. For neonates, developmental screening is of limited usefulness, although the CNS can identify infants with risk factors for developmental delay. For infants up to preschool-age children, the Ages and Stages Questionnaires, 3rd edition is a reliable and valid screening tool to identify infants and children who may benefit from more formal developmental evaluation.18,19The CNS’s focus on development of nursing practice excellence and evidence-based practice, along with skills in leadership and collaboration, make the CNS ideally suited to lead interdisciplinary developmental care rounds and ensure that appropriate referrals for developmental therapies are placed. Developmental care rounding also provides an opportunity to educate parents on incorporating developmental activities and therapies after hospital discharge as well as to identify infants who would benefit from ongoing structured outpatient developmental intervention. As a change agent and champion for nursing excellence, the CNS can also use developmental rounding as a mechanism to educate nursing staff and to identify bedside nurses who support developmental care and are eager to facilitate practice changes.The CNS’s skills in change implementation are vital for integrating developmentally supportive care practices into CICU nursing care. Some IFDC measures, such as skin-to-skin holding or kangaroo care, were not routinely implemented in the CICU, due largely to concerns about the safety of these measures in an infant with actual or potential cardiac and respiratory instability, but recent studies have demonstrated that kangaroo care can be safely implemented in the CICU.20-22 Other developmentally supportive practices that may be appropriate to implement include developmentally supportive positioning, environmental sound and light modification, parental holding, infant massage, and promotion of breastfeeding.17,23 Developmentally supportive positioning avoids the frog-legged, arms extended perpendicular to the body position commonly seen in the CICU, in favor of flexed and aligned positioning through use of blanket rolls and other positioning equipment. Supportive positioning supports the development of self-regulatory behavior and may also improve musculoskeletal development.24 Environmental sound and light modification may help to reduce delirium and infant stress and support the development of circadian rhythms.25 In healthy term and preterm infants, massage and maternal touch has been shown to attenuate biobehavioral responses to stress and pain, improve the quality of maternal-infant interaction, and improve developmental outcomes.26-29A structure the CNS could use to implement these changes is Kotter’s 8-Step Model.30,31 This model incorporates 3 initial steps to create a climate for change: creating urgency, forming a guiding coalition, and creating vision. The developmental sequelae of CHD supply the urgency, and the CNS should carefully identify the relevant stakeholders, including nursing leadership, bedside nurses, physicians, physical/occupational/speech therapists, social workers, and lactation consultants, to develop a shared vision and goals for practice changes. The second set of 3 steps engage and enable the organization to implement change by communicating the vision, empowering action, and creating quick wins. The CNS coordinates activities to facilitate change implementation, such as developing evidence-based policies and protocols to support new practices, developing and implementing educational materials on the new practices, advocating for necessary resources such as new equipment, and collaborating with Information Technology to ensure that the electronic medical record documents the new care practices. Empowering action is accomplished through direct consultation with bedside nurses to incorporate appropriate IFDC practices into an infant’s plan of care, as well as through recruiting bedside nurses as IFDC “champions.” As the leader of the developmental care team, the CNS models behaviors that support the integration of IFDC and thereby empowers the bedside nurse. Creating quick wins provides positive reinforcement of change and improves its acceptance. This could be done by implementing new care practices one at a time, rather than all at once, and celebrating each success. The CNS can also create quick wins for individual staff members by publicly recognizing staff who have incorporated IFDC measures into the infant’s plan of care during developmental rounds.The final 2 steps in Kotter’s change model address sustainability of change. A staged rollout of IFDC practices supports building on change, as would expanding IFDC eligibility criteria as practices are integrated into standards of care. For example, although Lisanti and colleagues20 reported that kangaroo care was safe for neonates recovering from cardiac surgery, they also identified specific eligibility criteria.With experience, and after demonstrating safety in the initially eligible group, it may be appropriate to expand the eligibility criteria.The final step in Kotter’s model is making the change permanent. The CNS can cement the change by evaluating the outcomes and then disseminating the results. It is imperative that CNSs participate in developing the body of evidence on IFDC in the pediatric cardiac population by participating in multicenter research efforts such as the Cardiac Neurodevelopmental Outcome Collaborative, the Consortium for Congenital Cardiac Care–Measurement of Nursing Practice, or other scientific collaborative groups. For the CNS with less expertise in research, collaboration with a nurse scientist based at an academic institution could provide an ideal partnership of research and clinical practice to design and implement research on the effect of IFDC on outcomes. Outcomes assessment should include collecting data on outcomes of IFDC, such as length of stay, hospital cost, time to achieve oral feeding, parent satisfaction, parent stress and anxiety, infant stress measures, quality of life, and short-term developmental outcomes. One extremely important but some-times neglected aspect of this inquiry is dissemination of the results through publication and/or presentation; without this step, evidence cannot be incorporated into practice.Improved survival of infants with CHD has allowed the focus of care to expand from life-saving intervention to include the mitigation of adverse developmental outcomes. IFDC improves outcomes in premature infants in the NICU, but evidence is lacking in the application of these principles to the care of infants with CHD. The CNS is uniquely capable of supporting clinical practice changes to integrate IFDC into standards of care and studying its effects on outcomes in this at-risk population. Through expert clinical practice, collaboration, consultation, coaching, leadership, advocacy, and research/evidence-based practice, the CNS can positively affect neurodevelopmental outcomes in CHD survivors, contribute to evidence-based nursing practice and the evolution of IFDC for infants with CHD, and enhance organizational outcomes such as hospital length of stay and family satisfaction.
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Oct 1, 2023
Daniel K.Y. Chan + 8