The Why and How of Family-Centered Care.

Although the Accreditation Council for Graduate Medical Education states that neonatal-perinatal medicine fellows must demonstrate an understanding of the emotional impact of admission to the NICU on a family, few curricula are in place to teach this important competency. Family-centered care (FCC) in the NICU is an approach to health care that focuses on decreasing mental and emotional trauma for families while empowering them to reclaim their role as caregivers. FCC is deeply rooted in trauma-informed care and is crucial during transition periods throughout the NICU admission. In this article, we provide a review of FCC and trauma-informed care and how to use these approaches at different stages during an infant's hospitalization. We also discuss parent support networks and how to integrate FCC into an existing NICU practice.

Burden of Treatments for Respiratory Complications in Extremely Premature Infants: Interviews with Caregivers.

Introduction: Extremely premature (EP) infants (<28 weeks gestational age) with respiratory conditions after discharge from the neonatal intensive care unit (NICU) impose a significant burden on caregivers. This study explored caregiver burden post-NICU discharge and perceptions of meaningful change in infant chronic respiratory morbidity. Methods: Adult primary caregivers of EP infants 3-14 months corrected age were recruited through patient advocacy organizations or hospital centers in the USA, Northern Ireland, Germany, and Japan and interviewed by phone. Interviews explored caregiver experiences with infants with respiratory conditions, associated treatment burden, and meaningful change in infant respiratory morbidity as measured by treatment use. Qualitative analysis of interview data was performed using MAXQDA software. Sociodemographic data were summarized using descriptive statistics. Results: Forty-five caregivers (95.6% female) of EP infants were interviewed. Respiratory morbidities post-NICU discharge included coughing (78%), breathing difficulties (76%), wheezing (58%), and bronchopulmonary dysplasia/chronic lung disease of prematurity (56%). Respiratory medications were required by 87% of infants, 80% used home respiratory technology support (e.g., supplemental oxygen), 38% were re-hospitalized, and 33% had emergency department visits. Caregivers considered visits to the emergency department to be the most burdensome treatment requirement they experienced, and reduction in the number of emergency department visits was considered the most meaningful change in treatment use. Conclusion: These findings underscore the significant burden faced by caregivers of EP infants with respiratory morbidities. Development of treatments for respiratory complications should take into consideration the concerns and preferences of caregivers in order to provide a meaningful benefit.

Evaluation of a course for neonatal fellows on providing psychosocial support to NICU families.

Objectives: Families in the Neonatal Intensive Care Unit (NICU) experience significant psychological distress. Fellowship training requires education on mental health issues. No standardized program exists. We evaluated the impact of an online course, combining research with family perspectives, on neonatology fellow knowledge and self-efficacy when emotionally supporting NICU families. Methods: Fellows from 20 programs completed a course covering: (1) Parent Mental Health, (2) Infant Mental Health, (3) Communication, and (4) Comprehensive Mental Health (e.g., discharge, bereavement) with pre- and post-course knowledge and self-efficacy assessments. Results: Fellows (n=91) completed the course and assessments. Pre-course knowledge was similar by year of training (1st: 66.9%; 2nd: 67.2%; 3rd: 67.4%). Mean knowledge and self-efficacy improved between pre- and post-course assessments regardless of training year or prior education for knowledge (d=1.2) (67.1% vs. 79.4%) and for self-efficacy (d=1.2) (4.7 vs 5.2 on 6-point Likert scale). Fellows who gained more knowledge had higher self-efficacy scores at post-test (r = .37). Conclusions: Current neonatal fellowship training under-educates on mental health. An online course improved fellow knowledge and self-efficacy. Our course may be an exemplar for others creating similar curricula. Innovation: An online course enriched by patient perspectives is an effective method of disseminating education around mental health.

The culture of research communication in neonatal intensive care units: key stakeholder perspectives.

OBJECTIVE: To assess the perspectives of neonatologists, neonatal nurses, and parents on research-related education and communication practices in the neonatal intensive care unit (NICU). STUDY DESIGN: Questionnaire circulated through interest groups and administered using the internet. RESULTS: 323 respondents responded to the survey. 52 were neonatologists, 188 were neonatal nurses, and 83 were parents of NICU graduates. Analysis was descriptive. Differences were noted between stakeholder groups with respect to whether current medications meet the needs of sick neonates, research as central to the mission of the NICU, availability of appropriate education/training for all members of the research team, and adequacy of information provided to parents before, during, and after a research study is completed. CONCLUSION: Engagement of nurses and parents at all stages of NICU research is currently suboptimal; relevant good practices, including education, should be shared among neonatal units.

Improving Staff Knowledge and Attitudes Toward Providing Psychosocial Support to NICU Parents Through an Online Education Course.

BACKGROUND: Provider-parent communication is a critical determinant of how neonatal intensive care unit (NICU) parents cope, yet staff feel inadequately trained in communication techniques; many parents are not satisfied with the support they receive from hospital providers. PURPOSE: This study evaluated whether NICU staff would demonstrate improved knowledge and attitudes about providing psychosocial support to parents after taking an online course. METHODS: After providing demographic information, staff at 2 NICUs took a 33-item survey both before and after taking a 7-module online course "Caring for Babies and Their Families," and again at 6-month follow-up. Scores (means ± standard deviation) from all time periods were compared and effect sizes calculated for each of the course modules. RESULTS: NICU staff participants (n = 114) included nurses (88%), social workers (7%), physicians (4%), and occupational therapists (1%). NICU staff showed significant improvement in both knowledge and attitudes in all modules after taking the course, and improvements in all module subscores remained significant at the 6-month follow-up mark. Night staff and staff with less experience had lower pretest scores on several items, which improved on posttest. IMPLICATIONS FOR PRACTICE: This course, developed by an interprofessional group that included graduate NICU parents, was highly effective in improving staff knowledge and attitudes regarding the provision of psychosocial support to NICU parents, and in eliminating differences related to shift worked and duration of work experience in the NICU. IMPLICATIONS FOR RESEARCH: Future research should evaluate course efficacy across NICU disciplines beyond nursing, impact on staff performance, and whether parent satisfaction with care is improved.