Article

Current state of high-risk infant follow-up care in the United States: Results of a national survey of academic follow-up programs

Division of Neonatology, Cincinnati Children's Hospital Medical Center, Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
Journal of perinatology: official journal of the California Perinatal Association (Impact Factor: 2.07). 07/2011; 32(4):293-8. DOI: 10.1038/jp.2011.97
Source: PubMed

ABSTRACT

High-risk infant follow-up programs have the potential to act as multipurpose clinics by providing continuity of clinical care, education of health care trainees and facilitating outcome data research. Currently there are no nationally representative data on high-risk infant follow-up practices in the United States. The objective of this study is to collect information about the composition of high-risk infant follow-up programs associated with academic centers in the United States, with respect to their structure, function, funding resources and developmental assessment practices, and to identify the barriers to establishment of such programs.
Staff neonatologists, follow-up program directors and division directors of 170 Neonatal Intensive Care Units (NICU) associated with pediatric residency programs were invited to participate in an anonymous online survey from October 2009 to January 2010.
The overall response rate was 84%. Ninety three percent of the respondents have a follow-up program associated with their NICU. Birth weight, gestational age and critical illness in the NICU were the major criteria for follow-up care. Management of nutrition and neurodevelopmental assessments was the most common service provided. Over 70% have health care trainees in the clinic. About 75% of the respondents have the neurodevelopmental outcome data available. Most of the respondents reported multiple funding sources. Lack of personnel and funding were the most common causes for not having a follow-up program.
High-risk infant follow-up programs associated with academic centers in the United States are functioning as multidisciplinary programs providing clinical care, trainee education and facilitating outcomes research.

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    • "Neonatal follow-up (NFU) provides care for infants at greatest risk for morbidities (Vohr et al. 2004; Wilson-Costello et al. 2005) subsequent to preterm birth and neonatal intensive care unit (NICU) hospitalization. NFU provides assessment and diagnosis, referral to intervention services, care co-ordination, and education and support for families (Feldman 1987; Synnes et al. 2006; Kuppala et al. 2012). Despite the benefits, nonattendance continues to range from 10 to 30% in Canada (Feldman 1987; Campbell et al. 1993; Ballantyne et al. 2012), Europe (Wolke et al. 1995; Tin et al. 1998) and Australia (Callanan et al. 2001), and from 20 to 50% in the United States (Slater et al. 1987; Catlett et al. 1993; Castro et al. 2004; Perenyi et al. 2011). "
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    ABSTRACT: Background Despite the benefits of Neonatal Follow-Up (NFU) programs for infants at risk for developmental problems subsequent to preterm birth, non-attendance continues to be a problem within Canada and beyond. This study investigated the barriers and facilitators to attendance at Canadian NFU programs from mothers' and health care providers' (HCP) perspectives.Methods In this multi-site qualitative descriptive study, we conducted semi-structured individual interviews with 12 mothers, six from each of two NFU programs; and focus groups with 20 HCPs from nine NFU programs. Interviews were audio-recorded and transcribed and then subjected to thematic analysis.ResultsThe predominant barriers represented a complex interplay of cumulative factors: mothers' isolation and feeling overwhelmed, with limited support, experiencing difficulty attending because of limited resources, who viewed NFU as not needed until problems arose for their child. Other barriers included vulnerability and fear of bad news. Mothers reported the need to protect their vulnerable child from risks, whereas HCPs reported creating vulnerability by monitoring the child's development over time. HCPs perceived fear of bad news as a barrier, whereas mothers viewed that impending bad news increased their need to attend to address the issue. The predominant facilitators were support, family centred-care and mothers with adequate resources.Conclusions Attendance is most problematic for mothers with limited support, capacity and resources. First and foremost, targeted approaches to NFU service provision are needed to address the cumulative barriers and improve experiences for mothers who find it difficult to attend NFU. A continuous relationship with a single point of contact is needed and merits further investigation – a provider who works across the traditional silos of neonatal intensive care, NFU and community services, minimizes duplication and navigates transitions.
    Full-text · Article · Oct 2014 · Child Care Health and Development
    • "It has been shown that high-risk infant follow-up programs are crucial for providing clinical care, trainee education, and facilitating outcomes research.[33] It must be considered to get feedback of the training program because most of the learned skills deteriorate after completion of the course, especially resuscitation program. "
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    ABSTRACT: The infants, hospitalized in the neonatal intensive care unit (NICU), engage with problems from admission to discharge, exploring of which ensures their safe transition. The purpose of this study was to identify the factors that influence infant's transition from the NICU to home. A qualitative study was used for identifying the factors that affect infant's transition. Data were gathered by interviewing 16 nurses and physicians in NICUs of university hospitals in Iran; and were analyzed by qualitative content analysis method. MAXQDA, MAX Qualitative Data Analysis, is a software which has been developed in Berlin, Germany. software, the qualitative data analysis package, was used for coding and categorizing. There are 10 categories that affect infant's transition, as revealed in data analysis. These categories were delineated into three themes: Cognition of infant's needs, effectiveness of trainings, and organizational context. The results of this study further disclosed the factors that facilitate or hinder infant's transition from the NICU to home. The aspects of correct cognition along with more effective trainings must be fully introduced to the staff to meet infant's needs. Also, authorities are better to make policies to decrease organizational barriers. Therefore, it is suggested that applying developmental care can ease infant's transition.
    No preview · Article · Mar 2013 · Iranian journal of nursing and midwifery research
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    • "Neonatal follow-up (NFU) provides care for infants at greatest risk for morbidities (Vohr et al. 2004; Wilson-Costello et al. 2005) subsequent to preterm birth and neonatal intensive care unit (NICU) hospitalization. NFU provides assessment and diagnosis, referral to intervention services, care co-ordination, and education and support for families (Feldman 1987; Synnes et al. 2006; Kuppala et al. 2012). Despite the benefits, nonattendance continues to range from 10 to 30% in Canada (Feldman 1987; Campbell et al. 1993; Ballantyne et al. 2012), Europe (Wolke et al. 1995; Tin et al. 1998) and Australia (Callanan et al. 2001), and from 20 to 50% in the United States (Slater et al. 1987; Catlett et al. 1993; Castro et al. 2004; Perenyi et al. 2011). "
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    ABSTRACT: Background: Neonatal Follow-Up (NFU) programmes provide health services for families of infants at high risk of developmental problems following difficult or extremely premature birth: yet, up to 30% of families do not attend these programmes with their infants. Methods: The study objective was to determine maternal and infant factors that predicted attendance at NFU programmes. Utilizing Andersen's Behavioural Model of Health Services Use, a prospective two-phase multi-site descriptive cohort study was conducted in three Canadian Neonatal Intensive Care Units (NICU) that refer to two affiliated NFU programmes. In Phase 1, 357 mothers completed standardized questionnaires that addressed maternal and infant factors, prior to their infants' NICU discharge. In Phase 2, attendance at NFU was followed at three time points over a 12-month period. Factors of interest included predisposing factors (e.g. demographic characteristics and social context); enabling factors (e.g. social support, travel distance, and income); and infant illness severity (i.e. needs factors). Multivariate logistic regression was used to estimate the odds ratio for each independent factor. Results: Mothers parenting alone, experiencing higher levels of worry about maternal alcohol or drug use, or at greater distances from NFU were less likely to attend. Mothers experiencing higher maternal stress at the time of the infant's NICU hospitalization were more likely to attend NFU. No infant factors were predictive of NFU attendance. Conclusions: Mothers at risk of not attending NFU programmes with their infants require better identification, triage, referral and additional support to promote engagement with NFU programmes and improved quality of life for their high-risk infants.
    Full-text · Article · Jan 2013 · Child Care Health and Development
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