Family-centered Developmental Care Research Articles

Early parental vocal contact in neonatal units: rationale and clinical guidelines for implementation.

This paper aims to present clear and evidence-based proposals for the integration of Early Parental Vocal Contact into the clinical practices of neonatal units. In the first part, we present a comprehensive rationale exploring the ontogenesis of voice perception in both term and preterm newborns that establishes a foundational understanding. This knowledge serves as a crucial starting point for developing evidence-based auditory and multisensory interventions aimed at fostering the developmental trajectory of preterm infants. Drawing insights from neuroscience and brain development, our proposals underscore the significance of tailoring auditory environments within neonatal settings. Special attention is given to the unique needs of preterm infants, factoring in their gestational age and maturation levels. In the second part clinical guidelines for implementation are provided and healthcare professionals are supported to assist parents in modulating their vocal interactions, aligning them with the infant's responses. Furthermore, we provide practical suggestions for engaging in discussions with parents about the content, duration, and frequency of vocal interventions. Finally, we delve into the potential roles of caregivers, parents, and health professionals within this enriched parental vocal interactional environment. Our perspective is firmly grounded in an infant and family-centered developmental care philosophy, aiming to enhance the overall well-being and the neurodevelopment of preterm infants in neonatal units.

Prioritizing family-centered developmental care: insights from parents of children with critical congenital heart disease: a qualitative study

As survivors of early cardiac surgery are at high risk of neurodevelopmental impairments, systematic health observations of children with critical congenital heart disease (CCHD) throughout childhood are recommended to enable early diagnosis and offer interventions to optimize neurodevelopment. A qualitative study using thematic analysis was performed to explore parents’ concerns, experiences, and needs regarding the development and received developmental care of their child (0–10 years) during hospital admission and beyond. Data were collected using semi-structured online interviews with 20 parents of children with CCHD. Four major themes were identified: (1) “impact of diagnosis and disease on the family-system,” (2) “parental concerns from diagnoses and beyond,” (3) “the need for information,” and (4) “the need for individualized and family-centered care.” The main themes can be divided into 13 sub-themes as impact, concerns, and needs are influenced by various impactful moments from diagnosis and afterwards. Conclusion: This study confirms the importance of early identification of neurodevelopmental problems by experienced healthcare professionals, especially in the early years when parental expectations and concerns about their child’s neurodevelopment are lower. A tailor-made family-centered follow-up program should be offered, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system. Furthermore, an online portal is recommended with a variety of reliable, controlled, understandable information from which parents can obtain the desired information to understand better the consequences of specific heart condition and to provide their child with the best possible guidance.What is Known:• Survivors of early cardiac surgery are at high risk of neurodevelopmental impairments; systematic health observations of children with CCHD throughout childhood are strongly recommended.What is New:• Parents need a tailor-made family-centered follow-up program, which pays attention to both the neurodevelopment of patients with CCHD as well as the mental wellbeing of the entire family system.• An online portal offering diverse, trustworthy information and sources would effectively meet parents’ needs by providing accessible insights into the potential consequences of specific heart conditions and guiding them in supporting their child optimally.

Barriers to the Implementation of Infant- and Family-Centered Developmental Care From Focus Groups With Neonatal Care Providers.

Although infant- and family-centered developmental care (IFCDC) is scientifically grounded and offered in many hospitals to some extent, it has not yet been universally implemented as the standard of care. In this article, we aim to identify barriers to the implementation of IFCDC in Belgian neonatal care from the perspective of neonatal care providers. We conducted 8 online focus groups with 40 healthcare providers working in neonatal care services. An inductive thematic analysis was carried out by means of Nvivo. The focus groups revealed barriers related to contextual, hospital, and neonatal unit characteristics. Barriers found in the hospital and neonatal unit were related to financing, staffing, infrastructure, access to knowledge/information and learning climate, leadership engagement, and relative priority of IFCDC. Contextual barriers were related to peer pressure and partnerships, newborn/parent needs and resources, external policy, and budgetary incentives. Three main barriers to IFCDC implementation have been identified. Resources (staffing, financing, and infrastructure) must be available and aligned with IFCDC standards, knowledge and information have to be accessible and continuously updated, and hospital management should support IFCDC implementation to create an enabling climate, including compatibility with the existing workflow, learning opportunities, and priority setting.

How NICU design and infant and family-centered developmental care act synergistically to support babies and families.

Recommended NICU Design Standards and Infant and Family Centered Developmental Care standards have complementary goals. Design standards focus on environmental modifications necessary to enhance NICU baby and family experiences and outcomes. Infant and Family Developmental Care Standards focus on the functional aspects of babies' and families' experience, including the caregiving environment. When applied in the NICU environment of care, both complementary evidence-based standards can function synergistically to promote better outcomes for babies and families.

Parental Experiences of Neonatal Care: A Nationwide Study on Determinants of Excellence

Introduction: Infant- and family-centered developmental care can reduce adverse outcomes in both infants and parents. Parents’ experiences of the care and staff treatment remain to be evaluated. Methods: Parents of infants admitted to neonatal units in Sweden from July 2020 to May 2022 responded to a questionnaire with standardized questions about in-hospital care. Exposures were hospital, gestational age, length of hospital stay, unit level, and bed density. The proportions of parents rating aspects of neonatal care as excellent, defined as five on a Likert scale, and the determinants of excellence were described. The results were benchmarked with ratings in adult somatic care. Results: A total of 4,475/13,108 (34%) parents responded. The ratings of excellent care varied by question from 65% to 90%. The largest variation in excellence between neonatal units (range 43–80%) was found for “participation and involvement.” The proportion of excellence was significantly lower among parents of extremely preterm infants. Confidence in the staff was lower in parents of extremely preterm infants than in parents of term infants (56% vs. 83%). Longer hospital stays affected the experience of neonatal care adversely, whereas level of care and bed density were overall unrelated to the parental experience. Parents in neonatal care rated the care as excellent to a higher extent than patients cared for in adult medicine. Conclusion: A majority of parents rated neonatal care in Sweden as excellent. The less frequent ratings of excellence among parents of extremely preterm infants indicate that more could be done to optimize parental involvement and support.

Modifications in family centered developmental care and in neonatal intensive care during the COVID-19 pandemic in a hospital in Spain: A qualitative study

IntroductionFamily centered developmental care (FCDC) are a philosophy of care in the neonatal care units (NICU), based on the control of sensory stimulation the adequate position and of newborn and the family involvement of cares. Nursing staff are the main providers of this care. Sanitary measure to control of the COVID-19, such as the use of masks, isolation of positive cases and capacity limit, conditioned the implementation of FCDC. ObjectivesTo understand the meaning of the experience of the nursing staff of a neonatal intensive care unit (NICU) on the implementation of the FCDC, under the sanitary measures imposed for the containment of COVID-19. MethodsA qualitative study was conducted from the descriptive phenomenological paradigm in which NICU nurses were recruited. The qualitative data collection was carried out through open-ended and semi-structured interviews. These were analyzed respectively through a preliminary narrative analysis and a thematic analysis of the informant nurses’ narratives and discourses. ResultsThree open-ended and 7 semi-structured interviews were conducted from which three main topics emerged: 1) changes in the FCDC derived from the sanitary restrictions implemented for the containment of COVID-19; 2) changes in interpersonal relationships in the context of a pandemic, and 3) transition to normality. ConclusionsThe nurses of NICU perceived changes in the implementation of the FCDC due to the containment of COVID-19, that modified the relationship with the parents of NB, accelerating their training as caregivers, and involved the implementation of new measures such as video calls.

Does the Implementation of Multidisciplinary Developmental Care Rounds Increase the Utilization of Developmental Caregiving Interventions in the Neonatal Unit?

The aims of this project were to improve the utilization of developmental care practices in the neonatal unit and to increase opportunities for parental involvement in the planning and provision of caregiving. This implementation project was conducted in a 79-bed neonatal tertiary referral unit in Australia. A pre/postimplementation survey design was utilized. A preimplementation survey was conducted to collect data on staff's perceived perception of developmental care practices. Following analysis of the data, a process for multidisciplinary developmental care rounds was developed and then implemented across the neonatal unit. A postimplementation survey was then conducted to evaluate whether staff perceived any changes in developmental care practices. The project was conducted over 8 months. A total of 97 surveys (pre: n = 46/post: n = 51) were received. Differences were demonstrated in staff's perceived perception of developmental care practices between the pre- and postimplementation periods in 6 themes of developmental care practice. Identified areas of improvement included the use of the 5-step dialogue, encouragement of parents to contribute to care planning, availability of a well-defined care plan for parents to visualize and document caregiving activities, increased use of swaddled bathing, side-lying position for nappy changes, consideration of infants sleep state before caregiving, and increased use of skin-to-skin therapy for management of procedural pain. Despite the majority of staff members who participated in both surveys acknowledging the importance of family-centered developmental care practice on neonatal outcomes, their use in clinical care is not always considered or practiced. Although it is reassuring to see improvements in several areas of developmental care postimplementation of the developmental care rounds, continued awareness and reinforcement of developmental neuroprotective caregiving strategies through initiatives such as a multidisciplinary care rounds are warranted.

White Paper Executive Summary for the First Fragile Infant Forum for Integration of Standards (FIFI-S): Feeding, Eating, and Nutrition Delivery based on the Recommended Standards, Competencies, and Best Practices for Infant and Family-Centered Developmental Care in Intensive Care Monrovia, CA July 13-15, 2022

White Paper Executive Summary for the First Fragile Infant Forum for Integration of Standards (FIFI-S): Feeding, Eating, and Nutrition Delivery based on the Recommended Standards, Competencies, and Best Practices for Infant and Family-Centered Developmental Care in Intensive Care Monrovia, CA July 13-15, 2022

Missed Caregiving: A Call to Action for Health System Leadership.

Five years ago, we wrote an editorial about the goals of individualized developmental care and the implementation challenges neonatal intensive care units (NICUs) face even when established care guidelines exist, in light of the fact that the evidence for many interventions were still lacking.1 Existing barriers included healthcare system structures that did not support delivery of developmentally focused care. For example, despite the knowledge that high noise levels are stressful for both infants and parents, many alarm systems do not inform caregivers without also creating significant noise. Since that first editorial, significant empirical evidence highlights the value of integrated family-centered developmental care interventions for both high-risk infants and their familes2–4; yet, NICUs continue to struggle to fully implement this important care. For example, evidence of the importance of zero separation of infants from their families now exists.2,4 Currently, the lack of full implementation of integrated family-centered developmental care is frequently blamed on the COVID-19 pandemic.5–8 At the height of the pandemic, parent access to the NICU was significantly limited. Yet, even today parental presence in the NICU is limited by nursery policies, COVID-19 quarantine protocols, and structural determinants such as lack of access to affordable transportation. Parents may need to care for other children who are not able to attend school or day care because of COVID-19 exposures or illness. Even when parent presence in the NICU is unhindered by COVID-19, they may not be able to afford to be with their infant as frequently or as long as they would prefer because of their job requirements or transportation costs. In addition, the COVID-19 pandemic has led to nurse burnout, stress, and staff shortages.9,10 Short-staffed NICUs create morale distress for nurses who cannot deliver the high quality of care they know the infants and families deserve.11 Regardless, even when parents are present in the nursery, staff may not have the time to support parents' informational, emotional, and physical needs. The term “missed care” is often used to refer to care that is not, but should be, delivered. Missed care in the NICU often includes the provision of integrated family-centered care and was present prior to the pandemic12 and is related to nurse job enjoyment and their plans to leave the NICU.13 To ensure nurses can deliver the care they know is essential for the infants and families, hospital health systems must support workload assessment that includes these important aspects of caregiving.14 Every neonatal nurse knows that it takes more time to teach and support a parent to provide caregiving to perform that caregiving themselves. Yet, parental presence and participation in the health care decision making and delivery of care are essential to parental confidence in their caregiving and decreasing infant hospital stay. Parents must be acknowledged as an important aspect of the caregiving team, potentially the most important aspect, given their long-term impact on the growth and development of the infant. Over the past 2 years, we have all seen the power of the voice of nurses. It is now time to raise our voices for ourselves and the infants and families we serve. We must advocate at the national level for standardized staffing levels that allow for the appropriated delivery of care and polices that ensure that parental presence is not compromised on the basis of racial and structural determinants of health. While zero separation may seem like an unreasonable and unobtainable goal, if we don't have such a goal we will not begin to move the needle toward a more optimal setting that supports the growth and development of infants and their families. Therefore, given the importance of the provision of integrated family-centered care, nurses must be afforded the time to ensure they can have effective interactions with families, deliver developmental interventions and parent teaching, and maintain ongoing relationships with families over the course of the hospital stay. —Debra Brandon, PhD, RN, CCNS, FAAN Co-Editor; Advances in Neonatal Care [email protected] —Jacqueline M. McGrath, PhD, RN, FNAP, FAAN Co-Editor; Advances in Neonatal Care [email protected]

Fragile Infant and Family-Centered Developmental Care Evidence-Based Standards: The Value of Systems Thinking

Fragile Infant and Family-Centered Developmental Care Evidence-Based Standards: The Value of Systems Thinking

A pivotal moment in the evolution of neonatal care.

While extraordinary advances have been made in the medical care of critically ill newborns, understanding the need of even the smallest of these infants for early, extensive, intimate human contact and facilitating the family's role in the care of their baby has been much slower and inconsistent. There is abundant evidence for the essential role of nurturing parent-infant connections (bonding/attachment) for development of optimal physical, cognitive, and emotional health of all babies. It is time to leave behind the tradition of sensory deprivation and social isolation common in the care of high-risk infants. A paradigm shift is needed in neonatal care to acknowledge the critical importance of infant and family-centered developmental care and to remove any remaining constraints on a family's ability to become full partners in the nurture of their NICU newborn.

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

Individualized family-centered developmental care (IFDC) is considered the standard of care for premature/medically fragile newborns and their families in intensive care units (ICUs). Such care for infants with congenital heart disease (CHD) varies. The Consortium for Congenital Cardiac Care- Measurement of Nursing Practice (C4-MNP) was surveyed to determine the state of IFDC for infants younger than 6 months with CHD in ICUs. An electronic survey was disseminated to 1 nurse at each participating center. The survey included questions on IFDC-related nursing practice, organized in 4 sections: demographics, nursing practice, interdisciplinary practice, and parent support. Data were summarized by using descriptive statistics. Differences in IFDC practices and IFDC-related education were assessed, and practices were compared across 3 clinical scenarios of varying infant acuity by using the χ2 test. The response rate was 66% (25 centers). Most respondents (72%) did not have IFDC guidelines; 63% incorporated IFDC interventions and 67% documented IFDC practices. Only 29% reported that their ICU had a neurodevelopmental team. Significant differences were reported across the 3 clinical scenarios for 11 of 14 IFDC practices. Skin-to-skin holding was provided least often across all levels of acuity. Nurse education related to IFDC was associated with more use of IFDC (P < .05). Practices related to IFDC vary among ICUs. Opportunities exist to develop IFDC guidelines for infants with CHD to inform clinical practice and nurse education. Next steps include convening a C4-MNP group to develop guidelines and implement IFDC initiatives for collaborative evaluation.

Clinical Pearls

Almost one-third of deaths in the United States take place in intensive care units. Critical care health providers report high levels of stress and burnout when working with end-of-life (EOL) care. Although various EOL care interventions have been developed, little evidence is available on their use in practice.Palma and colleagues conducted focus groups with physicians, nurses, and nursing assistants in Chile to explore their perceptions of EOL care. The major themes include The findings show the need for interprofessional collaborative strategies to support all critical care staff. The authors suggest communication training to build care providers’ confidence in EOL care.See Article, pp 24-32. Delirium affects up to 80% of all patients in intensive care units (ICUs). This costly complication (&gt;$182 billion nationally) has been associated with long-term cognitive and functional deterioration. Standardized screening tools, such as the Confusion Assessment Method for the ICU (CAM-ICU), are widely used in practice by highly trained delirium experts and ICU providers. However, when used by bedside practitioners, the sensitivity of the tool for detecting delirium drops significantly.Sinvani and colleagues explored the feasibility of using a telehealth training program with a remotely located delirium specialist. They found Although further research is needed to examine the impact of telehealth on patient outcomes, the authors suggest use of tele-ICU platforms to share expertise from one remote location to numerous other sites.See Article, pp 73-76. Visitation of family members during the COVID-19 pandemic was not permitted in most hospitals, greatly affecting communication between the patient’s provider and the surrogate decision maker (SDM). Although many intensive care units instituted a daily telephone call between a senior physician and the SDM to provide patient-related information, perceptions of this practice are unknown.Fritz and colleagues surveyed SDMs, physicians, family members, and other health care providers to assess their experience with this practice. They found The practice was satisfactory for most physicians and SDMs; however, the authors suggest improvement with more frequent calls and use of videoconferencing.See Article, pp 77-81. Infants born with a congenital heart defect (CHD) are at risk for neurodevelopmental abnormalities such as cognitive disabilities, mental health problems, and gross motor deficits. Individualized family-centered developmental care (IFDC) interventions such as cue-based care and parent participation have been successfully used with premature infants to prevent neurodevelopmental problems; however, the practice with infants with a CHD varies.LaRonde and colleagues surveyed nurses from 25 cardiovascular programs to describe the current state of IFDC practice. They found Although most respondents described competence with IFDC, practice varied widely. The authors state that next steps should include development of guidelines for infants with CHD and then implementation and evaluation across pediatric critical care settings.See Article, pp e10-e19.

Gravens By Design: Infant and Family-Centered Developmental Care Standards, Competencies and Best Practices—What is the Evidence?

Gravens By Design: Infant and Family-Centered Developmental Care Standards, Competencies and Best Practices—What is the Evidence?

Neonatal Nurses' Report of Family-Centered Care Resources and Practices.

A paucity of studies describes the prevalence of family-centered care (FCC) practices and resources in US neonatal units. To identify US prevalence of FCC practices and resources and to identify the largest gaps in resource provision. Neonatal nurses completed an online survey through national conferences (eg, NANN educational conference), neonatal organization Web sites (eg, NANN research survey), and social media (eg, NANN and NPA Facebook). Nurses provided demographics and the National Perinatal Association Self-Assessment on Comprehensive Family Support, a 61-item checklist of FCC practices and resources from 6 categories: family-centered developmental care, staff education/support, peer support, palliative care, discharge education, and mental health support. Nurses (n = 103) reported lowest resources for Peer Support and Mental Health Support. About a third had a neonatal intensive care unit parent advisory committee (n = 39; 37.9%). Only 43.7% (n = 45) had necessary amenities for families to stay with their infants. Less than a third felt that mental health professionals were adequately staffed to provide counseling to parents (n = 28; 27.5%). Very few nurses had adequate training on providing parents psychological support (n = 16; 15.8%). More than half (n = 58; 56.3%) stated that all staff receive training in family-centered developmental care. Finally, less than half (n = 42; 40.8%) stated that staff see parents as equal members of the care team. We demonstrate a consistent and widespread lack of training provided to neonatal staff in nearly every aspect of comprehensive FCC support. Researchers need to identify unit/organizational interventions that increase adoption and implementation of FCC practices and resources.

Individualized Family-Centered Developmental Care: A Model for High-Quality Care.

Individualized Family-Centered Developmental Care: A Model for High-Quality Care.

Changes of Infant- and Family-Centered Care Practices Administered to Extremely Preterm Infants During Implementation of the NIDCAP Program.

Introduction: Many studies have evaluated the Neonatal Individualized Developmental Care and Assessment Program (NIDCAP), but few studies have assessed changes in infant- and family-centered developmental care (IFCDC) practices during its implementation.Objectives: The primary objective of this single center study was to investigate the impact of the implementation of the NIDCAP program on IFCDC practices used for management of extremely preterm infants (EPIs). The secondary objective was to determine during implementation the impact of this program on the short-term medical outcomes of all EPIs hospitalized at our center.Methods: All EPIs (<28 weeks gestational age) who were hospitalized at Strasbourg University Hospital from 2007 to 2014 were initially included. Outborn infants were excluded. The data of EPIs were compared for three time periods: 2007 to 2008 (pre-NIDCAP), 2010 to 2011, and 2013 to 2014 (during-NIDCAP implementation) using appropriate statistical tests. The clinical and caring procedures used during the first 14 days of life were analyzed, with a focus on components of individualized developmental care (NIDCAP observations), infant pain management (number of painful procedures, clinical pain assessment), skin-to-skin contact (SSC; frequency, day of initiation, and duration), and family access and involvement in the care of their children (duration of parental presence, parental participation in care). The short-term mortality and morbidity at discharge were evaluated.Results: We examined 228 EPIs who received care during the three time periods. Over time, painful procedures decreased, but pain evaluations, parental involvement in care, individualized observations, and SSC increased (all p < 0.01). In addition, the first SSC was performed earlier (p = 0.03) and lasted longer (p < 0.01). There were no differences in mortality and morbidity, but there were reductions in the duration of mechanical ventilation (p = 0.02) and the time from birth to first extubation (p = 0.02), and an increase of weight gain at discharge (p = 0.02).Conclusion: NIDCAP implementation was accompanied by progressive, measurable, and significant changes in IFCDC strategies. There were, concomitantly, moderate but statistically significant improvements in multiple important outcome measures of all hospitalized EPI.

Assessment of an Educational Tool for Pediatric Cardiac Nurses on Individualized Family-Centered Developmental Care.

Prevention of neurodevelopmental sequelae is a high priority in the care of infants with congenital heart defects. Individualized family-centered developmental care has been identified as a promising approach to promote infant neurodevelopment during hospitalization. To educate nurses on the concept of individualized family-centered developmental care and its application to nursing practice and to reduce perceived barriers to its implementation. Two evidence-based visual educational tools called "developmental care flowers" were created and implemented in the inpatient and procedural units of a cardiac center. Each flower petal represented a core component of individualized family-centered developmental care: cue-based care, patient positioning, supportive environment, and parent engagement. Surveys were administered before and after the educational intervention to assess changes in nurses' knowledge and perceptions of individualized family-centered developmental care. Nurses reported that the developmental care flowers improved their understanding of individualized family-centered developmental care. The educational tools reduced some perceived barriers to implementation of this care model and increased nurse-reported inclusion of parents in care. Qualitative feedback from staff members regarding the tools was positive and acknowledged that individualized family-centered developmental care should be an ongoing priority. The inpatient and procedural developmental care flowers are useful tools for educating nurses about individualized family-centered developmental care. They could be revised into more interactive tools that might be used to educate parents and further support the integration of this care concept into nursing practice.

The Collateral Impact of COVID-19 Emergency on Neonatal Intensive Care Units and Family-Centered Care: Challenges and Opportunities.

The ongoing Coronavirus disease 2019 (COVID-19) pandemic is disrupting most specialized healthcare services worldwide, including those for high-risk newborns and their families. Due to the risk of contagion, critically ill infants, relatives and professionals attending neonatal intensive care units (NICUs) are undergoing a profound remodeling of the organization and quality of care. In particular, mitigation strategies adopted to combat the COVID-19 pandemic may hinder the implementation of family-centered care within the NICU. This may put newborns at risk for several adverse effects, e.g., less weight gain, more nosocomial infections, increased length of NICU stay as well as long-term worse cognitive, emotional, and social development. This article aims to contribute to deepening the knowledge on the psychological impact of COVID-19 on parents and NICU staff members based on empirical data from the literature. We also provided evidence-based indications on how to safely empower families and support NICU staff facing such a threatening emergency, while preserving the crucial role of family-centered developmental care practices.

Recommended Standards, Competencies and Best Practices for Infant and Family Centered Developmental Care in the Intensive Care Unit

Recommended Standards, Competencies and Best Practices for Infant and Family Centered Developmental Care in the Intensive Care Unit