Family Management Skills Reported by Parents of Preterm Infants in the NICU Using the Self- and Family Management Framework (SFMF).

BACKGROUND: Across the globe, family-integrated care (FICare) has become an evidence-based standard in which parents deliver the majority of infant care in the neonatal intensive care unit (NICU). Because of extensive barriers to parent presence, adaptations to FICare may be required for successful implementation. Family management theory may provide structure to the Parent Education of FICare and help nurses guide parents' skill development as equal care members. PURPOSE: To identify family management skills employed by NICU parents using the Self- and Family Management Framework (SFMF). METHODS: We conducted secondary analyses of qualitative interview data from NICU parents (n = 17) who shared their experiences of using family management skills to care for their infant. We categorized skills according to 3 main self- and family management processes: Focusing on Infant Illness Needs; Activating Resources; and Living With Infant Illness. RESULTS: Parents reported several family management skills currently identified in the SFMF, as well as new skills such as conflict management, power brokerage, and addressing resources related to social determinants of health. Parent activation of resources was critical to sustaining parent focus on the infant's illness needs. IMPLICATIONS FOR PRACTICE AND RESEARCH: By teaching skills that parents reported as helping them manage infant care, neonatal nurses may better facilitate parent integration into the care team. Future researchers can incorporate the skills identified in this study into the design of family management interventions that facilitate FICare implementation in the United States.

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

BACKGROUND: A paucity of studies describes the prevalence of family-centered care (FCC) practices and resources in US neonatal units. PURPOSE: To identify US prevalence of FCC practices and resources and to identify the largest gaps in resource provision. METHODS: 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. RESULTS: 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. IMPLICATIONS FOR PRACTICE: We demonstrate a consistent and widespread lack of training provided to neonatal staff in nearly every aspect of comprehensive FCC support. IMPLICATIONS FOR RESEARCH: Researchers need to identify unit/organizational interventions that increase adoption and implementation of FCC practices and resources.

A clinical-academic partnership to develop a family management intervention for parents of preterm infants.

AIMS: To examine the critical role that an academic clinical partnership played in the development and refinement of a family management intervention in the Neonatal Intensive Care Unit (NICU). BACKGROUND: Clinical-academic partnerships enable earlier infusion of implementation science principles into development of evidence-based interventions, yet partners often report difficulty leveraging resources, personnel and expertise to create beneficial outcomes for all. DESIGN: Longitudinal qualitative descriptive design. METHODS: To develop and refine the intervention, designated time was taken during meetings of the NICU's Parent Partnership Council (PPC), a committee comprised of nursing, physician and allied health leadership and former NICU parents. Partnership was also achieved by having bedside clinical nurses, in addition to medical and nursing students, participate as research team members. Qualitative data were collected via email, research team and Council meetings, and informal individual chats with key stakeholders (N = 25) and NICU mothers (N = 22). Qualitative data were analysed deductively using thematic analysis based on MacPhee's partnership logic model and the Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) model. The consolidated criteria for reporting qualitative research checklist guided our work. RESULTS: During Council meetings, the clinical-academic nurse, Director of Family-Integrated Care and Council members identified the need for a family management intervention, and worked together to develop and refine PREEMIE PROGRESS. Mothers found the intervention had numerous strengths and perceived a benefit knowing they helped future parents. CONCLUSIONS: This work was only possible by leveraging both the university's technology/research resources and the clinical expertise of the NICU staff and PPC. Co-authored presentations, publications and grant funding continued this NICU's legacy in family-centred care and helped shape the clinical-academic nurse's career. RELEVANCE TO CLINICAL PRACTICE: Clinical-academic partnerships can promote excellence in nursing practice, research and education through swifter knowledge translation and earlier infusion of implementation science principles into the development of evidence-based nursing interventions.

Promoting family-centered care in the NICU through a parent-to-parent manager position.

BACKGROUND: The Family-Centered Care (FCC) committee had formulated multiple ideas for projects but was unable to fully carry out and sustain many of the initiatives. The committee felt that to implement the proposed FCC projects someone would need to devote full attention to the task. The parent-to-parent (PTP) position was created to develop and sustain initiatives of our institution's NICU Family Support Program. PURPOSE: The purpose of this article is to describe the process of creating a PTP manager position and the effects it can have in the NICU for the family. Program outcomes were assessed in 3 areas that align with core principles of FCC: (1) emotional support and parent empowerment, (2) a welcoming environment with supportive policies, and (3) education for staff and families. The assessment of the program included review and attendance of parent support offerings, review and revision of parent material, and survey evaluation of staff education. FINDINGS/RESULTS: In the first year, the program reached over 800 families, provided 136 parent education hours, and organized social activities that reached 847 families. IMPLICATIONS FOR PRACTICE: The creation of a PTP manager position has been instrumental in the development and management of multiple initiatives to offer families and staff continued support and education. IMPLICATIONS FOR RESEARCH: Further evaluation of programs and strategies for PTP support in the NICU setting is needed.

Implementing an open unit policy in a neonatal intensive care unit: nurses' and parents' perceptions.

Family presence is linked to reduced stress, better patient safety, and increased family satisfaction. But parental presence can increase nurses' workload and make nurses feel uncomfortable. An open unit (OU) policy and plan for implementation was developed. An anonymous survey was given to nurses about an OU pre- and postimplementation. Responses were used to learn perceived barriers; focus groups were held to understand the concerns and develop solutions. The success of the program was measured by pre/post nursing and parent surveys. Initially, 87% (76/87) of nurses were not in favor of an OU. Most common concerns were as follows: HIPPA 71%, social issues 56%, and increased time for report 45%. Post-OU, only 17% (10/59) were not in favor. Fifty-four percent expressed no major concerns. The most common concerns were as follows: interruptions 25%, limited space 22%, HIPPA 17%. Eighty percent cited benefits for parents. Most common benefits were as follows: increased visiting 49% and improved parent emotional state 43%. Pre-OU, 78% (18/23) of parents felt they were allowed to be with their baby as much as they wanted compared to 92% (36/39) post-OU. Neonatal intensive care unit nurses had reservations toward open visitation, but with education and a focused process for implementation, most nurses favored the change and benefits for families were recognized. Parent satisfaction increased regarding time spent with their infant.

Application of a Risk Management Framework to Parent Sleep During Skin-to-Skin Care in the NICU.

As NICU staff work to increase the frequency, duration, and comfort of skin-to-skin care (SSC) sessions, barriers to implementation are frequently encountered. Safety concerns are often raised when parents fall asleep during SSC intentionally or unintentionally. We present a risk management framework that we use in clinical practice to address risk related to parent sleep during SSC. Our approach is based on the steps of the Risk Management Life Cycle, which include the following: establish context, identify risk, analyze risk, respond to risk, and monitor and adapt response to risk. Clinicians may use this framework in clinical practice to manage risks related to prolonged SSC, specifically when parents relax and fall asleep during SSC.

Early antenatal counseling in the outpatient setting for high-risk pregnancies: a randomized control trial.

OBJECTIVES: Determine if antenatal counseling delivered in the outpatient setting improves parental knowledge and satisfaction without contributing to anxiety. STUDY DESIGN: Randomized control trial at a large academic institution. Mothers at risk for preterm delivery were enrolled following routine maternal-fetal medicine (MFM) visits and randomized to early antenatal counseling of prematurity or standard counseling by MFM providers. The primary outcome was parental knowledge of prematurity. Secondary outcomes included parental satisfaction, anxiety scores, and compliance with recommended follow-up. RESULTS: Seventy-six women were enrolled, 38 in each group. Early counseling group had higher knowledge scores (86.3 vs 64.3, p = <0.001) and parental satisfaction (p = 0.003). Anxiety scores were similar between the two groups (38.2 vs 40.4, p = 0.53). No difference was noted in compliance with follow-up. CONCLUSIONS: Antenatal counseling in the high-risk outpatient setting improved parental knowledge and satisfaction without leading to increased anxiety.

Antenatal counseling in the gray zone of viability.

OBJECTIVE: The objective of this study is to determine the resuscitation choices at 22-24 weeks gestation, related to whether mothers received antenatal counseling and the timing relative to delivery. STUDY DESIGN: A retrospective chart review was performed of infants inborn at 22-24 weeks, over a 5-year period. Infants were excluded if they had major birth defects, were still hospitalized, or the consult occurred before 22 weeks. RESULT: Of 121 infants born at 220-246 weeks, 91 were born to mothers who received a neonatology consult. For 80 infants resuscitated after consult, the median time between consult and delivery was 51.7 h (range: 0.1-366.3 h). For 11 infants who received comfort care after consult, the median time between consult and delivery was 20.0 h (range: 0.8-64.4 h). CONCLUSIONS: After receiving counseling on the morbidity and mortality of delivery at 22-24 weeks, most parents chose resuscitation. Overall, 12-24 h between consult and delivery, parents were more likely to choose comfort care.

Clinician Opinions and Approaches to Manage Risk Related to Safe Sleep During Skin-to-Skin Care.

OBJECTIVE: To understand the opinions of clinicians about the risks, benefits, barriers, and facilitators to the practice of parent sleep during skin-to-skin care in hospital settings. DESIGN: Cross-sectional survey. SETTING: Online survey. PARTICIPANTS: Clinicians who self-identified as infant care providers, that is, neonatal clinicians (N = 158). METHODS: We sent an online survey invitation to neonatal clinicians through neonatal websites, conferences, and social media sites in the United States and used snowball recruitment. We used a risk management framework to analyze qualitative data. We used descriptive statistics and the chi-square and Fisher's exact tests to determine if opinions differed based on clinician and organizational characteristics. RESULTS: Respondents' support of parent sleep during skin-to-skin care (yes/no) did not differ on the basis of whether the clinician had taken a formal course on skin-to-skin care, facilitated skin-to-skin care more than 100 times, or frequently promoted skin-to-skin care in current practice. Respondents who supported parent sleep (n = 93, 59% of respondents) reported greater implementation of risk control strategies than nonsupporters (n = 53 [57%] vs. n = 3 [5%]; p < .001), such as frequent monitoring of vital signs (n = 33 [35%] vs. n = 2 [3%]; p < .001), use of devices to support skin-to-skin care (n = 49 [53%] vs. n = 19 [29%]; p = .003), and proper positioning (n = 20 [22%] vs. n = 0 [0%]; p < .001). Nonsupporters more frequently reported that parent sleep during skin-to-skin care violates safe sleep recommendations, is habit forming for home, poses a fall risk, and jeopardizes the infant's airway. CONCLUSION: Most respondents supported parent sleep during skin-to-skin care, but concerns regarding safety for the infant remained a barrier. The use of a risk management framework may help facilitate a systematic approach to improve the implementation of safe skin-to-skin practices.

Preparing families to care for ventilated infants at home.

Advances in neonatal care have led to increased survival of infants with complex medical needs and technology dependence. Transition of the ventilator-dependent infant from hospital to home is a complex process that requires extensive coordination between the medical team and family. Home caregivers must be prepared to provide routine care for the ventilator-dependent child and respond to life-threatening emergencies. Families should be counseled on the need for home nursing, medical equipment and an adequate home environment to ensure a safe transition to home. Throughout the process, the family may require financial, social and psychological support. A structured education and transition process that is clearly communicated to parents is necessary to have an effective partnership with families.

Improving Thermal Support in Very and Extremely Low Birth Weight Infants during Interfacility Transport.

INTRODUCTION: Review of very low birth weight (VLBW) and extremely low birth weight (ELBW) neonates transported by our specialized pediatric/neonatal transport team revealed hypothermia in up to 52% of admissions. This project aimed to decrease the incidence of hypothermia in VLBW and ELBW neonates requiring transport between facilities from 52% to <20% over 1 year. METHODS: In response to gaps in knowledge and barriers to care revealed by a survey administered to transport personnel, we used a standard quality improvement plan-do-study-act model to introduce new equipment and a comprehensive thermoregulation protocol via standardized education. The primary outcome measure was the incidence of hypothermia (axillary temperature < 36.5°C) in transported VLBW and ELBW neonates. The process measure was compliance with the protocol. The balancing measures were unintended hyperthermia and transport team ground time. Transport personnel were updated on progress via meetings and run charts. RESULTS: We reduced the incidence of hypothermia to 17% in 1 year. Compliance with the protocol improved from 60% to 76%. There was no increase in unintended hyperthermia (5% preintervention, 4% intervention, 7% surveillance, P = 0.76) or transport team ground time (in hours) (1.2 ± 0.9 preintervention versus 1.3 ± 0.8 intervention versus 1.2 ± 0.7 surveillance, P = 0.2). CONCLUSIONS: Quality improvement methods were used to develop an evidence-based, standardized approach to thermal support in VLBW and ELBW neonates undergoing transport between facilities. Following the implementation of this approach, we achieved the desired percent decrease in the incidence of hypothermia.

Families as educators: a family-centered approach to teaching communication skills to neonatology fellows.

OBJECTIVE: To determine whether the use of family members as educators in a structured educational intervention would increase neonatology fellows' confidence in performing core communication skills targeted to guide family decision-making. STUDY DESIGN: Neonatology fellows at two centers participated in simulation-based training utilizing formally trained family members of former patients. Fellows completed self-assessment surveys before participating, immediately following participation, and 1-month following the training. Family members also evaluated fellow communication. RESULTS: For each core competency assessed, there was a statistically significant increase in self-perceived preparedness from pre-course to post-course assessments. Fellows additionally endorsed using skills learned in the curriculum in daily clinical practice. Family educators rated fellow communication highest in empathetic listening and nonverbal communication. CONCLUSIONS: Participation in a communication skills curriculum utilizing formally trained family members as educators for medical trainees successfully increased fellows' self-perceived preparedness in selected core competencies in communication. Family educators provided useful, generalizable feedback.

Implementing safe sleep practices in a neonatal intensive care unit.

OBJECTIVE: Sudden infant death syndrome (SIDS) remains the leading cause of death in the postnatal period. Accidental suffocation and strangulation in bed deaths have quadrupled. The American Academy of Pediatrics (AAP) expanded its back to sleep recommendations to include a safe sleep environment. The AAP makes recommendations to healthcare professionals to model safe sleep practices and educate families on SIDS reduction strategies. The dual aims of this project were to develop a safe sleep educational model for our neonatal intensive care unit (NICU), and to increase the percentage of eligible infants in a safe sleep environment. METHOD: The NICU Safe Sleep policy was revised to include AAP updated recommendations. Educational updates were provided to staff. A safe sleep packet with a video was created for and shared with families. Wearable blankets were implemented. A safe sleep observation checklist was created. Baseline data and post-education random observations data were collected and shared with staff. RESULTS: At baseline, 21% of eligible infants were in a safe sleep environment. After education and reported observation, safe sleep compliance increased to 88%. CONCLUSIONS: With formal staff and family education, optional wearable blanket, and data sharing, safe sleep compliance increased and patient safety improved.

A case of diprosopus: perinatal counseling and management.

Diprosopus is a rare congenital malformation associated with high mortality. Here, we describe a patient with diprosopus, multiple life-threatening anomalies, and genetic mutations. Prenatal diagnosis and counseling made a beneficial impact on the family and medical providers in the care of this case.

Two neonates with congenital hydrocolpos.

Introduction. Neonatal hydrocolpos is a rare condition. Hydrocolpos is cystic dilatation of the vagina with fluid accumulation due to a combination of stimulation of secretary glands of the reproductive tract and vaginal obstruction. The differential for a neonatal presentation of lower abdominal mass includes urogenital anomalies, Hirschsprung's, disease or sacrococcygeal teratoma. Prenatal diagnosis and early newborn imaging studies leads to early detection and treatment of these cases. Case. We report here two cases of neonatal hydrocolpos with prenatal diagnosis of lower abdominal mass. Postnatally, ultrasound, MRI imaging, and cystoscopy confirmed large cystic mass as hydrocolpos with distal vaginal obstruction. Both patients had enlarged renal system secondary to mass effect. Conclusion. High index of suspicion for hydrocolpos in a newborn presenting with fetal diagnosis of infraumbilical abdominal mass will facilitate timely intervention and prevention of complications.

Effects of implementing family-centered rounds (FCRs) in a neonatal intensive care unit (NICU).

OBJECTIVES: (1) Evaluate impact of FCR on provider satisfaction and collaboration. (2) Evaluate impact of FCR on parent satisfaction with provider communication. METHODS: Collaboration and Satisfaction about Care Decisions (CSACD) questionnaire was given to staff on 4 patients 2 days a week for 5 weeks prior to and 6 months after implementation of FCR. Parents received a Parents Stress Scale and Neonatal Instrument of Parent Satisfaction before discharge, prior to and 6 months after starting FCR. RESULTS: 278/288 (97%) staff surveys were completed, 142 pre and 136 post. On the CSACD survey NNPs and fellows showed increased (p < 0.05) collaboration and satisfaction post FCR. No group had decreased satisfaction. Twenty-eight of 45 (62%) parent surveys were completed, 12 pre and 16 post. Parents' satisfaction scores increased (p < 0.01) pre vs. post on survey items regarding communication, meeting with physicians, and obtaining information about their infants. CONCLUSIONS: FCR was associated with enhanced collaboration among team members for NNPs and fellows. Parents' satisfaction scores increased post FCR on survey items regarding communication. Since NNPs and fellows are the primary communicators with parents, the increased satisfaction may reflect improved communication due to FCR. This added opportunity for open dialogue may also contribute to the increased parent satisfaction.