Prematurity affects approximately 10% of America's children (Martin, Hamilton, Osterman, Driscoll, & Drake, 2018). Preterm birth is defined as birth before the completion of 37 weeks of gestation. Globally, the preterm birth rate ranges from 5% to 18% (Synnes & Hicks, 2018). Unlike those born decades ago, children born preterm are surviving and thriving into adulthood. These children have significant potential for physical, psychological, neurodevelopmental, and behavioral impairments that may present long after the neonatal period (Raju et al., 2016). According to the National Survey of Child Health (NSCH) 2016/2017, a nationally representative survey of children under 17 years old, 11.5% of children surveyed were born preterm (95% CI, 10.9–12.1; population estimate 8,346,872); of those born preterm, 17.4% (95% CI, 16.1–18.9; population estimate 2,351,141) have a special health care need (SHCN) (Child and Adolescent Health Measurement Initiative, 2016/2017). The NSCH utilizes the Maternal and Child Health Bureau definition of children with an SHCN as those who have one or more chronic physical, developmental, behavioral or emotional condition, and who also require health and related services of a type or amount beyond that required by children generally (McPherson et al., 1998). The NSCH further categorizes the SHCN by level of severity, 2016/2017 data indicate that 19.1% (95% CI, 17.3–21.0; population estimate 1,800,070) of preterm participants report more complex special health care needs, whereas 13.6% (95% CI, 11.8–15.6; population estimate 551.071) experience less severe SHCN.
The National Research Council (NRC) and Institute of Medicine (IOM) stressed that preterm births matter a great deal to children's future health, not because preterm birth presents an insurmountable challenge but because it establishes the basis for adult well-being (NRC & IOM, 2004). Furthermore, successful health promotion and management of children born preterm throughout childhood requires health care providers to have a fundamental understanding of the potential ramifications of preterm birth. Potential visible and invisible comorbidities and neurodevelopmental limitations require recognition and proactive management by pediatric primary and specialty health care providers (Raju et al., 2016). Advanced practice nurses in primary care and specialty care play a critical role in educating and supporting families facing the long-term consequences of prematurity.
To care for this population, nurse practitioners must have and maintain accurate understanding of current outcomes, appropriate interventions, and referral time lines in order to partner with parents, educators, and specialists to address outcomes in children born preterm beyond the neonatal intensive care unit (Msall, 2014). In nursing education, textbooks remain a primary and essential educational resource. Knight (2015) concluded that topics covered in textbooks inform the topics taught and that faculty view textbooks as creditable resources to enhance and reinforce critical concepts. Textbooks may be viewed as a mechanism to link intended curriculum and the implemented curriculum (Okeeffe, 2013). To keep pace with the evidence-based literature and science in health care, textbook readings are often supplemented with the published literature. However, a search of CINAHL®, PubMed®, and ProQuest® databases from 2008 through 2018 revealed fewer than 25 publications specifically related to the primary care of children born preterm. The majority of the content addressed transition from neonatal intensive care unit to primary care and health management in infancy, rather than identification and management of long-term complications.
Background and Pertinent Literature
Sampling of Outcome Literature
Separate from the primary care literature, outcome literature focusing on children born preterm is expansive and typically separated into newborn outcomes, toddler-age outcomes, school-age outcomes, and long-term outcomes covering adolescence and young adulthood. A detailed review of the neurodevelopmental and health outcomes of children born preterm is beyond the scope of this article, but a brief sampling emphasizes the point that children born preterm represent a vulnerable population with low-severity, high-prevalence neurodevelopmental and special health care needs (Terrien Church, Luther, & Asztalos, 2012).
A review of neurodevelopmental outcomes of extremely preterm infants indicates that although the edge of viability has been pushed to its current limits, survivors of extreme preterm birth (gestational age at birth < 28 weeks) have high rates of severe disabilities such as intellectual impairment, cerebral palsy, blindness, and deafness (Jarjour, 2015). Increased rates of conditions associated with milder disabilities, such as impaired cognition, behavior, and learning, were also identified as issues that persist throughout childhood for children born extremely preterm (Jarjour, 2015).
In a review of neuropsychological outcome literature, Baron et al. (2012) found lower intelligence scores, poor academic achievement, and increased attention problems in 5-year-old children born late preterm. Similarly, Wong et al. (2014) observed children born extremely preterm participating in U.S. kindergarten programs and reported lower scores on cognitive tests, higher teacher rating of behavioral problems, and lower rates of social competence than their term peers (Wong et al., 2014). In a systematic review of neurodevelopmental outcomes, Pascal et al. (2018) concluded that cognitive and motor delays become more apparent with the increased demands associated with school readiness and participation. Analysis of the NSCH 2011/2012 data set indicates that for all age groups (age 0 to 17 years), children born preterm were more likely than their term peers to have an individualized family support plan or an individualized education plan (odds ratio [OR] = 1.82 to 2.69, p < .000) and more likely to ever repeat a grade (OR = 1.47 to 1.77, p < .000) (Kelly, 2018).
A systematic review of adult consequences of preterm birth identified preterm birth as an additional risk beyond family history and genetic background for both cardiovascular diseases and diabetes (Nuyt, Lavoie, Mohamed, Paquette, & Luu, 2017). Respiratory function of children born preterm, including those without evidence of bronchopulmonary dysplasia, experience obstructive lung disease with impaired response to bronchodilators (Nuyt et al., 2017). Long-term follow up suggests that individuals born preterm are at risk for decreased academic achievement, lower adult wages, and decreased adult wealth, and that these results extend to those born 26 to 32 weeks gestational age (Basten, Jaekel, Johnson, Gilmore, & Wolke, 2015; Johnson & Marlow, 2017). Early physiologic insults in the perinatal period negatively affect the physical, cognitive, and emotional development over the individual's lifespan (Litt & McCormick, 2016).
Highlights from existing outcome literature support the view that many children born preterm would benefit from early recognition, timely intervention, and life-long risk modification; however, for children to realize this benefit and to decrease overall risks, prematurity must be considered a relevant health variable extending beyond the scope of early childhood.
Deficiency in provider knowledge relative to the care of preterm children has been identified in various groups of health care providers. The use of corrected (adjusted) age versus chronologic age for health supervision and developmental surveillance is one of the most basic tenants of developmental surveillance of children born preterm. However, a retrospective review of electronic medical records revealed that despite recommendations from the American Academy of Pediatrics (AAP), many primary care providers fail to appropriately use corrected age (D'Agostino et al., 2013). This misstep has led to practice failures in both developmental surveillance and the initiation of solid food feeding in children born preterm.
A recent survey of pediatric nurse practitioners (N = 399) utilized the Premature-Birth Knowledge Scale (PBKS) to measure knowledge of the neurodevelopmental outcomes of children born preterm (Kelly & Dean, 2017). Pediatric nurse practitioners' mean scores were 17.79 (± 4.94) on the PBKS, with total possible scores ranging from 0 to 33, with higher scores reflecting greater knowledge. Participants represented 41 of 50 states in the United States. No significant differences were found between scores of participants based on years of experience as a nurse or as a nurse practitioner. Participants scored high on items related to general knowledge and patient management but low on items related to specific school-relevant neurodevelopmental outcomes (Kelly & Dean, 2017). Preliminary data from a small sample of family and adult nurse practitioners (N = 35) indicated a much lower mean knowledge score: 9.17 (± 4.0; preliminary unpublished data). Pediatric nurse practitioner participants reported limited focus on children born pre-term in their advanced practice nursing education program and a strong desire for more knowledge after participating in the study (Kelly & Dean, 2017).
The specific aims of this research were to use summative content analysis as a means to examine the content related to children born preterm in textbooks used in pediatric nurse practitioner programs. It was anticipated there would be limited emphasis not only on the population of children born preterm but also on the potential long-term sequalae and risks associated with preterm birth.
Summative Content Analysis
Summative content analysis as defined by Hsieh and Shannon (2005) is a type of qualitative analysis that uses specific words or content in text with the purpose of understanding the contextual use of the words or content. This type of analysis as a means of evaluating adequacy of content related to the specific subject matter being studied has a basis in medical and nursing education. Quantification of word or content usage in summative content analysis is aimed at understanding the contextual meaning and, in this case, the adequacy (extent and type of coverage) of the concept being studied. For example, previous summative content analysis of the quality and adequacy of end-of-life content in both medical (Rabow, Hardie, Fair, & McPhee, 2000) and nursing textbooks (Ferrell, Virani, Grant, & Juarez, 2000) has been performed, with the results framing deficiencies and areas for improvement. Similarly, disability content assessed using summative content analysis of undergraduate nursing curricula (Smeltzer, Dolen, Robinson-Smith, & Zimmerman, 2005), nursing textbooks (Smeltzer, Robinson-Smith, Dolen, Duffin & Al-Maqbali, 2010), and nurse practitioner curricula (Smeltzer, Blunt, Marozsan, & Wetzel-Effinger, 2015) led to the development of a valuable tool kit used by nurse practitioners ( http://www.villanova.edu/npsknowdisabilitycare).
Prior to the study, pediatric and family nurse practitioner faculty were queried specifically requesting what resources were used to address pediatric content within their courses. Responding faculty identified textbooks required for their courses. Some faculty responded that textbooks were supplemented with literature resources. As the intent of the current research was not to evaluate specific nurse practitioner programs, no identifying information was collected from faculty responding to the query. All textbooks identified were also included in the list of recommended resources for pediatric nurse practitioner certification granting bodies (Pediatric Nursing Certification Board [ https://www.pncb.org/cpnp-pc-exam-resources] and American Nurses Credentialing Center; however, that examination was retired in 2019). In this analysis, textbooks were excluded if publication was prior to 2012 or the focus was primarily critical care, pharmacology, or only adult health (e.g., specific family nurse practitioner textbooks).
A detailed list of key content and keywords was generated by the researchers and validated by pediatric and neonatal providers who were known to the primary researcher and practice in pediatric primary care or neonatal follow-up programs. A review grid, with detailed explanations of the content, grouped by age category, was constructed and used in the analysis. A 3-point rating scale consistent with other summative content analyses (e.g., Smeltzer et al., 2010) was used: absent/no mention of topic = 0, any mention = 1, well discussed = 2. Samples of items included in each topic area are presented in Table 1. Forty-six newborn items were divided into the following topic categories: neonatal terminology, neonatal assessment, neonatal complications, discharge planning, infant feeding, and disordered development. Nineteen toddler age items were included in the following two topic categories: assessment/screening, disordered development and persistent neonatal complications. Fourteen school-age items were included in two topic categories: disordered development and school performance/supports. Five adolescent items were included in two topic categories: school performance/supports and future health.
Sample Items From 84-Item Textbook Review Grid
Each reviewer independently reviewed the textbook index and table of contents to ascertain specific keywords or content and page number locations. A detailed review of each chapter likely to have content related to children born preterm occurred. Using the review grid, all chapters and specific pages were evaluated using the age categories and topic areas, and notes were made by the reviewers with specific examples of content included.
After independent textbook review was completed, the reviewers met to reach a consensus regarding ratings. Total textbook ratings, age category ratings, and topic ratings were derived for each textbook. Means and standard deviations for each topic and total scores for all were calculated. Total possible scores were derived from the number of items per category and maximum rating of two per item. Narrative comments from each reviewer were summarized for each specific category and for the textbook. Strengths and weaknesses of individual textbooks and categories were identified.
The research plan was reviewed by the Villanova University Institutional Review Board and deemed not subject to federal regulations.
A total of six textbooks, published between 2012 and 2017, were identified both as used in pediatric nurse practitioner programs and as recommended resources by the national certifying bodies for pediatric nurse practitioners. Resulting scores in each age category and the items in the category for each book, as well as the means and standard deviation for all books, are presented in Table 2. Percentages were calculated by dividing the score assigned divided by total possible score. One textbook identified as used by all programs scored a zero in all categories. This textbook was excluded from means and standard deviations calculations. Total score per textbook ranged from a low of 16 for textbook #5, which represents inclusion of 10% of total content, to a high of 68 for textbook #2, or 40% of total content.
Textbook Analysis: Age and Topic Categories, Total Scores
Scores were highest in all textbooks for items in the newborn category, with scores ranging from 16 to 47 (mean 32.4 ± 13.41) of a possible 92 points. The mean score of 32.4 represents inclusion of 35% of possible points for this category. Neonatal terminology for weight and weight for age designations were included in five of the six textbooks; only one textbook defined gestational age categories.
Scores for the toddler category ranged from 0 to 16 (mean 6.8 ± 5.60) of a possible 38 points. The mean score of 6.8 represents inclusion of 18% of possible points for this category. Toddler assessment and screening were addressed well in just one of the six textbooks.
Scores for the school-age and adolescent categories were markedly deficient. In the toddler category, scores ranged from 1 to 5 (mean 2.6 ± 2.06) of a possible 28 points. The mean score of 2.6 represents inclusion of 9% of possible points for the category. In the adolescent category, none of the topics identified as important content were included in any of the textbooks.
The overwhelming lack of content addressing children born preterm as a specific population is alarming. It is important to note that in this review, the textbooks selected were pediatric textbooks used in nurse practitioner programs but were not necessarily textbooks written specifically for pediatric nurse practitioner students. The sample included textbooks designed for all pediatric primary care providers, including physicians and advanced practice nurses.
The researchers noted missed opportunities when reviewing the textbooks. These suggestions are included in Table 3. Reviewers lamented the use of the term high-risk infant in some situations—for example, related to the vision and hearing screening—without identifying children born preterm as being high risk. Another general missed opportunity was the use of low–birth weight alone as a risk factor for specific conditions, rather than gestational age. Children born at lower birth weights are at risk for issues related to their small size; however, many have the benefit of longer gestation compared with children born preterm. Discussions of school readiness failed to address children born preterm as a specific population whose school readiness might need to be assessed. In the adolescent categories, school performance of children born preterm was not discussed in any textbook. Perhaps more concerning is the lack of discussion of preterm birth as a risk factor for adult noncommunicable diseases, such as diabetes, cardiovascular disease, and obstructive respiratory disease.
Missed Opportunities for Children Born Prematurely
Only one textbook had a specific chapter dedicated to children born preterm, and that textbook, not surprisingly, scored the highest on total scores but received only 40% of the total possible points, the majority of which were in the newborn category.
One textbook (#6), identified as used by all faculty and listed on both certification websites, failed to specifically address children born preterm in any sections, despite the textbook focus being health supervision of infants, children, and adolescents. This textbook identified routine screening and health supervision but failed to address children born preterm as a population who may require additional surveillance due to risk. This apparent disconnect was disconcerting.
The terms chronologic age and adjusted age, both recommended by the AAP yet inappropriately used by pediatric providers (D'Agostino et al., 2013) were only defined in textbook #2, which had a dedicated chapter for preterm children. This same text addressed neonatal terminology (70%), discharge planning (75%), and feeding (64%) for preterm infants the most thoroughly. Textbook #3 addressed newborn topics of neonatal assessment (72%) and neonatal complications (83%) most thoroughly.
Textbook #2 scored the highest on toddler assessment and screening. All textbooks except #5 and #6 discussed the addition of respiratory syncytial virus prophylaxis to the preterm child's immunization schedule, but only textbook #2 addressed the remainder of the schedule and the importance of adherence. Only text #3 addressed the specific complications from preterm birth that have the potential to persist well past the newborn period, including bronchopulmonary dysplasia, hypoxic ischemic encephalopathy, failure to thrive, and retinopathy of prematurity. Textbook #3 identified all these complications and addressed the implications they posed for primary care providers. Failure to thrive in children born preterm was discussed in textbooks #2 and #4, but the other conditions were not.
A critical deficiency was identified in the lack of recommendations for hearing and vision screening after infancy for children born preterm. Discussion of screening guidelines for “high-risk” infants that fail to link children born preterm as being “high-risk” effectively precludes them from risk-based screening. One textbook describes how only those children who fail screening would warrant vision or hearing follow up. Yet, children born preterm are at risk for sensory impairments that may further exacerbate cognitive and neurodevelopmental disabilities (Synnes & Hicks, 2018).
A common observation for all textbooks was the failure to discuss school readiness, disordered development, neurodevelopmental outcomes, and recommendations for school performance and supports for children born preterm. Textbooks #2 and #4 received five of a possible 28 points related to disordered development and school supports/performance. Neurodevelopmental research has identified children born preterm as a population with increased behavioral disorders; however, only one textbook (#4) provided discussion around behavioral screening tools, a discussion not specific to children born preterm.
Basic concepts such as defining individualized family service plans, individualized educational plans, or 504 plans were lacking. For example, individualized education plans were defined in three of the textbooks: #2, #3 and #4; 504 plans were defined in textbook #4. Head Start and Early Intervention programs were mentioned in one sentence in textbook #2 in relation to school readiness, and none of the texts addressed provider support and education of families about these programs. This is consistent with previous research that demonstrated limited provider knowledge of neurodevelopmental and educationally relevant outcomes of children born preterm (Kelly & Dean, 2017).
Most of the textbooks failed to address the role of the pediatric provider in preparing the family to advocate for their children in these proceedings. Specific content related to the need for specialized services such as physical or occupational therapy, speech therapy, or behavioral supports in the school setting were absent, as well as the potential need for these services in children born late preterm who appear to be healthy and are developing appropriately during infancy and toddler age.
School readiness became part of pediatric health care dialogue in the early 1990s, with the AAP issuing various recommendations (Committee on School Health & Committee on Early Childhood, Adoption, and Dependent Care, 1995; Committee on Early Childhood, Adoption, and Dependent Care, 2005), and most recently in 2016. The 2016 guidelines speak to the pediatric health care provider's role in optimizing school readiness, including seven specific roles: optimizing physical well-being, promoting social–emotional well-being, facilitating families' role in promoting cognitive and language development, promoting the 5 Rs of early childhood education (Reading, Rhyming, Routines, Rewards, Relationships), identification of children at risk, promotion of early childhood education, and advocating for services and supports (Council on Early Childhood & Council on School Health, 2016). These guidelines apply to children born preterm, as well as children at risk for faltering in school readiness, and whose continued success is contingent on their ability to master the increasing challenges of school and social interactions (Council on Early Childhood & Council on School Health, 2016).
None of the textbooks reviewed included content related to ongoing school support/performance or future adolescent health concerns for children born preterm. Specific adolescent items missing were potential ongoing need for academic supports, educational outcomes, and neurodevelopmental outcomes. No textbook addressed the emerging science of adult health risks associated with preterm birth or identified preterm birth as a potential for preterm delivery in females. Nuyt et al. (2017), in their literature review of adult health outcomes of children born preterm, concluded that preterm birth is an additive risk factor for cardiovascular disease and diabetes.
Textbooks provide a vital link to validate content taught in classrooms (Knight, 2015; Okeeffe, 2013). Currently, textbooks used in pediatric nurse practitioner programs fail to address the health and neurodevelopmental ramifications of preterm birth, an epidemic that affects 10% of children born in the United States each year. The omission of content related specifically to school age and adolescent children born preterm in pediatric textbooks is of significant concern. School readiness, educational support mechanisms, and ongoing health implications are critical components of pediatric primary care for all children and must be addressed in depth for children born preterm.
The current textbook analysis, as well as recent literature suggest the need for revisions to the educational standards, curricular content, and the resources used to support the education of all health care providers. In 2015, the National Institutes of Health convened a conference of multidisciplinary experts, The Adults Born Preterm: Epidemiology and Biologic Basis for Adult Outcomes, to elucidate the evidence of the epidemiologic, public health, and societal burden of diseases among those born preterm, to review potential mechanisms and consider research priorities (Raju et al., 2016). The Executive Summary from that conference calls for increased education for and awareness of health care providers regarding the long-term health outcomes of preterm birth survivors (Raju et al., 2016). All health care providers must recognize preterm birth as a lifelong risk factor that affects the health and well-being of all survivors of preterm birth.
This textbook analysis is consistent with the findings of researchers who have suggested that there is a critical gap in the knowledge of health care providers relative to those born pre-term (Kelly & Dean, 2017; Raju et al., 2016). Similar to the educational campaigns to increase health care provider appreciation and understanding of disability content and end-of-life content, educators must take up the mantel of including preterm birth at all levels of education. In 1981, the preterm birth rate in the United States was 9.4%; it reached a high of 11.8% in 1999, and the preterm birthrate has hovered just under 10% for the most of the 2000s (Martin et al., 2018). These statistics, coupled with a greater than 90% survival rate for the same time periods, are critical to understanding this epidemic. All health care providers are treating survivors of preterm birth because those born in the 1980s through the 2000s are now adults.
Failure to understand this, combined with the mistaken belief that issues related to preterm birth end at the door of the neonatal intensive care unit, contribute to a lack of appreciation of the importance of this topic. Further, much of the adolescent and adult outcome research has been possible only in the past decade and has been slow to penetrate the world of health care beyond the neonatal and pediatric specialist.
Revisions to the curriculum of health care providers (e.g., nurses, nurse practitioners, and physicians) should include an emphasis on children born preterm as a specific population with modifiable risks to future health. This process must begin with teaching health care providers at all levels to understand that preterm birth is an independent health risk that affects many aspects of health and well-being long after the patient's neonatal intensive care unit stay. Every provider must ask the question “Were you born preterm?” and understand what a positive response to that question means at every stage of life.
This may be facilitated through including either a specific chapter to address the issues related to children born preterm or as a theme throughout the textbook, such as with integration of genetics or disability content. The risk of including just one specific chapter on the care of children born preterm is that only those who are inclined to read that chapter will learn the content. However, reframing content to include preterm birth as a specific theme requires significant attention to the application of this evolving science.
- Baron, I.S., Litman, F.R., Ahronovich, M.D. & Baker, R. (2012). Late pre-term birth: A review of medical and neuropsychological childhood outcomes. Neuropsychology Review, 22, 438–450. doi:10.1007/s11065-012-9210-5 [CrossRef]
- Basten, M., Jaekel, J., Johnson, S., Gilmore, C. & Wolke, D.P. (2015). Pre-term birth and adult wealth: Mathematics skills count. Psychological Science, 16, 1608–1619. doi:10.1177/0956797615596230 [CrossRef]
- Child and Adolescent Health Measurement Initiative. (2016/2017). National survey of children's health interactive data query. Retrieved from http://www.childhealthdata.org
- Committee on Early Childhood, Adoption, and Dependent Care. (2005). Quality early education and child care from birth to kindergarten. Pediatrics, 115, 187–191. doi:10.1542/peds.2004-2213 [CrossRef]
- Committee on School Health, & Committee on Early Childhood, Adoption, and Dependent Care. (1995). The inappropriate use of school “readiness” tests. Pediatrics, 95, 437–438.
- Council on Early Childhood, & Council on School Health. (2016). The pediatrician's role in optimizing school readiness. Pediatrics, 138(3), e20162293. doi:10.1542/peds.2016-2293 [CrossRef]
- D'Agostino, J.A., Gerdes, M., Hoffman, C., Manning, M.L., Phalen, A. & Bernbaum, J. (2013). Provider use of corrected age during health supervision visits for premature infants. Journal of Pediatric Health Care, 27, 172–179. doi:10.1016/j.pedhc.2011.09.001 [CrossRef]
- Ferrell, B., Virani, R., Grant, M. & Juarez, G. (2000). Analysis of palliative care content in nursing textbooks. Journal of Palliative Care, 16, 39–47. doi:10.1177/082585970001600108 [CrossRef]
- Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288. doi:10.1177/1049732305276687 [CrossRef]
- Jarjour, I.T. (2015). Neurodevelopmental outcome after extreme prematurity: A review of the literature. Pediatric Neurology, 52, 143–152. doi:10.1016/j.pediatrneurol.2014.10.027 [CrossRef]
- Johnson, S. & Marlow, N. (2017). Early and long-term outcome of infants born extremely preterm. Archives of Diseases in Children, 102, 97–102. doi:. doi:10.1136/archdischild-2015-309581 [CrossRef]
- Kelly, M.M. (2018). Health and educational implications of prematurity in the United States: National Survey of Children's Health 2011/2012 data. Journal of the American Association of Nurse Practitioners, 30, 131–139. doi:10.1097/JXX.0000000000000021 [CrossRef]
- Kelly, M.M. & Dean, S. (2017). Utilization of the premature birth knowledge scale to assess pediatric provider knowledge of neurodevelopmental outcomes. Journal of Pediatric Health Care, 31, 467–483. doi:10.1016/j.pedhc.2016.12.006 [CrossRef]
- Knight, B.A. (2015). Teachers' use of textbooks in the digital age. Cogent Education, 2, 1015812. doi:10.1080/2331186X.2015.1015812 [CrossRef]
- Litt, J.S. & McCormick, M.C. (2016). The impact of special health care needs on academic achievement in children born prematurely. Academic Pediatrics, 16, 350–357. doi:10.1016/j.acap.2015.12.009 [CrossRef]
- Martin, J.A., Hamilton, B.E., Osterman, M.J.K., Driscoll, A.K. & Drake, P. (2018). Births: Final data for 2017. National Vital Statistics Reports, 67(8), 1–50.
- McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P.W. & Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102, 137–140. doi:10.1542/peds.102.1.137 [CrossRef]
- Msall, M. (2014). Commentary on “Kindergarten classroom functioning of extremely preterm/extremely low birth weight children” or “Leaving no child behind: Promoting educational success for preterm survivors.”Early Human Development, 90, 915–916. doi:10.1016/j.earlhumdev.2014.10.002 [CrossRef]
- National Research Council, & Institute of Medicine. (2004). Children's health, the nation's wealth: Assessing and improving child health. Washington, DC: National Academies Press.
- Nuyt, A.M., Lavoie, J.C., Mohamed, I., Paquette, K. & Luu, T.M. (2017). Adult consequences of extremely preterm birth: Cardiovascular and metabolic disease risk factors, mechanisms and prevention avenues. Clinics in Perinatology, 44, 315–332. doi:10.1016/j.clp.2017.01.010 [CrossRef]
- Okeeffe, L. (2013). A framework for textbook analysis. International Review of Contemporary Learning Research, 2, 1–13. doi:10.12785/irclr/020101 [CrossRef]
- Pascal, A., Govaert, P., Oostra, A., Naulaers, G., Ortibus, E. & Van den Broeck, C. (2018). Neurodevelopmental outcome in very preterm and very-low-birthweight infants born over the past decade: A meta-analytic review. Developmental Medicine and Child Neurology, 60, 342–355. doi:10.1111/dmcn.13675 [CrossRef]
- Rabow, M.W., Hardie, G.E., Fair, J.M. & McPhee, S.J. (2000). End-of-life care content in 50 textbooks from multiple specialties. JAMA, 283, 771–778. doi:10.1001/jama.283.6.771 [CrossRef]
- Raju, T.N.K., Pemberton, V.L., Saigal, S., Blaisdell, C.J., Moxey-Mims, M. & Buist, S. (2016). Long-term health outcomes of preterm birth: An executive summary of a conference sponsored by the National Institutes of Health. Journal of Pediatrics, 181, 309–318. doi:10.1016/j.jpeds.2016.10.015 [CrossRef]
- Smeltzer, S.C., Blunt, E., Marozsan, H. & Wetzel-Effinger, L. (2015). Inclusion of disability-related content in nurse practitioner curricula. Journal of the Association of Nurse Practitioners, 27, 213–221. doi:10.1002/2327-6924.12140 [CrossRef]
- Smeltzer, S.C., Dolen, M.A., Robinson-Smith, G. & Zimmerman, V. (2005). Integration of disability-related content in nursing curricula. Nursing Education Perspectives, 26, 210–216.
- Smeltzer, S.C., Robinson-Smith, G., Dolen, M.A., Duffin, J.M. & Al-Maqbali, M. (2010). Disability-related content in nursing textbooks. Nursing Education Perspectives, 31, 148–155.
- Synnes, A. & Hicks, M. (2018). Neurodevelopmental outcomes of preterm children at school age and beyond. Clinics in Perinatology, 45, 393–408. doi:10.1016/j.clp.2018.05.002 [CrossRef]
- Terrien Church, P., Luther, M. & Asztalos, E. (2012). The perfect storm: The high prevalence low severity outcomes of the preterm survivors. Current Pediatric Reviews, 8, 142–151. doi:10.2174/157339612800681325 [CrossRef]
- Wong, T., Taylor, H.G., Klein, N., Espy, K.A., Anselmo, M.G., Minich, N. & Hack, M. (2014). Kindergarten classroom functioning of extremely preterm/extremely low birth weight children. Early Human Development, 90, 907–914. doi:10.1016/j.earlhumdev.2014.09.011 [CrossRef]
Sample Items From 84-Item Textbook Review Grid
|Topic Area||Examples of Desirable Content|
|Neonatal terminology||Are the gestational age categories defined?|
|Are age and weight categories defined?|
|Are appropriate usages of chronologic age versus adjusted age discussed?|
|Neonatal discharge planning||Are NICU discharge guidelines listed?|
|Are NICU discharge guidelines of the medically complex infant listed?|
|Are discharge guidelines listed for the late-preterm infant in the regular nursery?|
|Are premature infant vision screening recommendations listed? (i.e., follow up for retinopathy of prematurity)|
|Are premature infant hearing screening recommendations listed? (i.e., risks after NICU, failed hearing screen)|
|Are early intervention referral guidelines for premature infants discussed?|
|Is anticipatory guidance for families of preterm infants discussed?|
|Toddler disordered development||Are recommendations for screening/for hearing deficits in toddlers born prematurely discussed?|
|Are recommendations for screening/for vision deficits in toddlers born prematurely discussed?|
|Are recommendations for screening/for speech deficits in toddlers born prematurely discussed?|
|Are recommendations discussed for Head Start/Early Head Start/Early Intervention?|
|School age||Are individualized education plans defined?|
|Are 504 plans defined?|
|Are family supports for the educational accommodation process discussed?|
|Adolescent||Are educational outcomes of adolescents discussed?|
|Is premature birth identified as a risk factor for future pregnancies?|
Textbook Analysis: Age and Topic Categories, Total Scores
|Topic||No. of Items||Highest Possible Score||Book 1||Book 2||Book 3||Book 4||Book 5||Book 6||Mean ± SD for All Books||Percentage for Category|
| Neonatal terminology||10||20||2||14||9||7||10||0||8.4 ± 3.93|
| Neonatal assessment||9||18||10||6||13||9||3||0||8.2 ± 3.43|
| Neonatal complications||9||18||0||4||15||8||1||0||5.6 ± 5.46|
| Discharge planning||8||16||2||12||5||6||2||0||5.4 ± 3.67|
| Feeding, infant||7||14||3||9||3||4||0||0||3.8 ± 2.93|
| Disordered development||3||6||0||2||0||3||0||0||1.0 ± 1.26|
| Total||46||92||17||47||45||37||16||0||32.40 ± 13.41||35%|
| Assessment/screening||6||12||2||10||0||3||0||0||3 ± 3.69|
| Disordered development||9||18||0||4||0||3||0||0||1.4 ± 1.74|
| Persistent complications||4||8||0||2||8||2||0||0||2.4 ± 2.94|
| Total||19||38||2||16||8||8||0||0||6.80 ± 5.60||18%|
| Disordered development||8||16||1||2||0||0||0||0||0.60 ± 0.80|
| School performance/supports||6||12||0||3||2||5||0||0||2.00 ± 1.90|
| Total||14||28||1||5||2||5||0||0||2.60 ± 2.06||9%|
| School performance supports||3||6||0||0||0||0||0||0||0.00|
| Future health||2||4||0||0||0||0||0||0||0.00|
|Total textbook scores||84||168||20||68||55||50||16||0|
|Total textbook percentages||12%||40%||38%||30%||10%|
Missed Opportunities for Children Born Prematurely
| Assessment of late preterm infant|
| Developmental patterns|
| Methods for increasing caloric density of breastmilk or formula|
| Methods for supporting breastfeeding in the preterm child|
|Neonatal discharge planning|
| Identification of the late preterm infants as at risk|
| Ongoing hearing and vision screening guidelines|
|Toddler disordered development|
| Adjusted age discussion|
|School age disordered development|
|School age school performance/supports|
|Adolescent school performance/supports|
|Adolescent future health|
| Identification of preterm birth as a risk for preterm delivery|
| Identification of future health risks related to preterm birth|