Increased survival of infants born prematurely (<37 completed weeks of gestation) and earlier discharge practices during the last decades, raise the question of the adequacy of post–hospital care and rehospitalizations. Premature infants suffer from a variety of health problems related to the immaturity of their vital organs, often requiring additional care and support after discharge. Follow-up clinics and community outreach programs have focused on the prevention of complications and the early recognition of possible health and developmental problems.1 However, recent studies have repeatedly shown that rehospitalization rates of premature infants are worrisome and lead to increased healthcare expenditures. Up to 27% of healthy preterm infants readmit to the hospital; in high-risk infants who spent time in the neonatal intensive care unit (NICU) and in the extremely low-birth-weight infants (<1000 g) rehospitalizations can be up to 50%.2,3 Late preterm infants, those born between 34 and 36 weeks completed gestation, readmit to the hospital twice as often as term infants do during the first year of life.4 The first 2 weeks at home after a NICU stay represents the time most likely for rehospitalizations; up to 30% of the preterm infants readmit within 3 months of discharge; and up to 50% visit emergency departments.2,3,5,6 Preterm infants also use primary care and special services more often than term infants do. Wade and colleagues6 found that preterm infants experienced 20 to 29 visits to pediatric offices during the first year after NICU discharge; Leijon and colleagues7 reported that 74.4% of the preterm infants used specialist services during the first year of life compared with 26.3% of term infants after NICU discharge. The average medical care costs through the first year of life are approximately $32 000 for preterm infants versus $3000 for a full-term, healthy infant.8 Late preterm infants have 3 times as high costs during the first year after discharge compared with their full-term counterparts.4
Major reasons for readmissions and emergency department visits are not necessarily related to premature birth per se, but often for common problems such as respiratory and gastrointestinal conditions.9 It is not precisely known how many of these problems are caused by inadequate caregiving and parenting at home. To better understand the reasons for preterm infant readmission, epidemiological data on rehospitalizations must be taken into consideration along with research findings on parenting of preterm infants and challenges parents face when providing care at home. The immediate period after hospital discharge, a period of transition from hospital to home, is critical for parents as they move from the hospital environment to the home setting where they take on all of the caregiving responsibilities and activities. This is the period when so many things can go wrong if parents lack the needed knowledge and skills for caring for an infant at home.
PARENTING PRETERM INFANTS
Throughout the last decades, research has documented difficulties parents have in parenting their preterm infants, and especially those whose infants were hospitalized after birth. Separation from an infant and the inability to fulfill parental responsibilities while in a hospital, the unusual appearance of an infant, and his/her lack of responsiveness impair parental infant attachment; thus, decreasing parental self-confidence and fostering feelings of being a “surrogate parent.”10 Mothers of premature infants suffer from depression, grief, and guilt, which are rooted in not giving birth to a “perfect” baby.11 Stress and anxiety are related to uncertainty about the infant's current health status and the infant's future development.12 Immediately after the birth of a preterm infant and during the hospitalization, mothers exhibit symptoms of posttraumatic and acute stress disorder.13,14 In the long term, parents may develop inadequate parenting styles such as compensatory parenting.15 Informational needs, concerns over the special needs of their infant, and their own caregiving abilities are often present and dictate the need for greater social and professional support for the parents of preterm infants.16 It has been shown that parental anxiety and depression can impede infant development and growth and increase the perception of infant vulnerability, which in turn can lead to greater use of healthcare services.17,18 The effects of the initial hospitalization and critical illness during the neonatal period may have long-term negative impact on the family, which may only disappear by young adulthood.19 A plethora of research studies have identified the following challenges in parents of preterm infants experienced both within the hospital and afterwards:
- Stress and anxiety20,21;
- Depression and grief16,22,23;
- Decreased confidence and self-efficacy in parenting24,25;
- Impaired parent-child interactions and role development26–29;
- Need for additional knowledge and caregiving skills30,31;
- Need for increased social and professional support.32,33
The first impressions and challenges encountered by parents in the hospital, if not resolved, will continue once the infant's discharge occurs.
TRANSITION: DEFINITION AND ITS MEASUREMENT
Transition is a complex multidimensional phenomenon or construct that is difficult to describe and define. No agreed-upon definition of transition exists.34 It is not completely clear whether transition is a process of a change, the result of a change, or an adaption to a change. Transition has been defined as “both a result of and a result in changes in lives, health, relationships, and environments,”35(p13) “periods between fairly stable states,”36(p238) “moving from one stage to another,” “leaving behind the familiar and trying something new,”37(p894) “a process of convoluted passage during which people redefine their sense of self and redevelop self-agency in response to disruptive life events.”34(p321) If transition is a process, then it is still unclear whether the dynamic process of transition has distinct starting and stopping points, or whether it is linear or cyclical.34 In this article, transition for parents of preterm infants after hospital discharge is defined as a nonlinear, not time-bound cyclical process of accepting parental responsibilities when moving from the safety of the hospital environment to independent caregiving at home after the birth of a preterm infant.
What makes transition from hospital to home especially difficult for parents of preterm infants is the fact that there are at least 2 major transitions present—transition to parenthood and transition from hospital to home, both extremely challenging especially in the case of parenting a preterm infant after birth hospitalization. Indeed, multiple types of transitions as described by Meleis and colleagues38,39—situational, developmental, organizational, and illness to health–-do coincide with that in parents of preterm infants. From one point of view, transition to parenthood/motherhood has been considered as a normative type of transition that is supposed to increase parental stress40; at the same time, some researchers considered preterm birth and parenting a preterm infant as a type of special parental crisis.41,42 The dual nature of transition in parents of preterm infants is reflected in the nursing literature. Kralik and colleagues34 excluded transition to parenthood/motherhood from her review on transition and included only “disruptive” ones (such as with illness), whereas Nelson43 in her review on transition to motherhood, excluded studies related to mothering of preterm infants. The second type of transition, transition from hospital to home or to other healthcare settings has also been found to be difficult for patients with different health problems. The first weeks and months have been shown to be challenging for parents of high-risk and premature infants,28,44–47 as well as in the elderly patients.48–50 Researchers found increased needs in knowledge and support after discharge, inadequate caregiver education, incomplete communication among the team members and patients, faulty coordination of post–discharge services that resulted in less than optimal quality of care, and increased healthcare costs due to potentially avoidable complications and rehospitalizations.
Measurement of transition, as well as its definition, has been complicated due to the multifaceted dimensions of the construct. In accordance with the complexity of the transition phenomenon, investigators have used a variety of instruments on parents of premature infants, both during hospitalization and after discharge. Often, instruments measure only one aspect of transition faced by parents, such as depression, anxiety, stress, parental confidence, self-efficacy, interactions.51–53 No adequate measurement tool exists that considers all of the multidimensionality of issues faced by parents of preterm infants during the transition from hospital to home. No sound theories or models exist that explain the challenges parents face when their infant is born prematurely, hospitalized, and discharged home. Often, available theories and instruments have to be adapted for use in parents of preterm infants.24,54 One situation-specific conceptual model, the Transition Model developed by Kenner and colleagues,28,29,44–46,55 was developed to clarify the transition from hospital to home in parents of newborn infants discharged from the NICU. It is described in the following texts.
Kenner transition model
Kenner and colleagues viewed transition in parents as a process of a change, not a product of change. Through a series of studies that included parents of both term and preterm infants, they classified parental post–hospital challenges and concerns into 5 categories: Informational Needs, Stress and Coping, Grief, Social Interaction, and Parent-Child Role Development. The main feature of the model is that concepts are interrelated and relationships are reciprocal, with Informational Needs being the core concept that influences all other parental problems. Informational Needs include caregiving information, behavior, and infant development—all information necessary for parents to provide care and cope with transition from hospital to home. Social Interaction is the parents' ability to socialize after their infant is born sick or preterm and includes support from the parental social network and health professionals, which can be viewed positively or negatively. Grief is defined as fear of the infant's ultimate death and loss of the “ideal” infant and influences relationships between parent and infant as well as social interaction in parents. Parent-Child Role Development is a relationship and interaction with an infant, which can be impaired by the infant's initial illness or special healthcare needs and interfere with development of parental role. Stress and Coping are related to a lack of clarity in parental role, uncertainty and anxiety caused by health problems in the neonatal period, and parental abilities to care and cope, with coping abilities depending on resources available (informational, tangible, and social). The Transition Model suggests the following relationships between categories:
- Informational Needs are the prevalent ones that influence all other categories of parental concerns and perception during transition
- Grief influences Parent-Child Role Development
- Stress and Coping influence Parent-Child Role Development
- Stress and Coping influence Social Interaction.
The model has been described in 4 editions of neonatal textbooks and used in the United States and abroad.32,56–59 An advantage of the model is that it has a specific multidimensional instrument for measuring transitional challenges in parents—the Transition Questionnaire, discussed later. The disadvantages of the Transition Model are that the model does not address the outcomes of transition; there is no graphic depiction of the model that would illustrate the relationships between concepts; and the concept of professional support need is not included. However, this is the only situation-specific model that has been used with parents of preterm infants and could be applied to that population after further development and validation.
The Transition Questionnaire is a multidimensional tool specifically developed for measuring the complex phenomena of transition in parents of newborn infants after a NICU discharge.44,55,60 Development of the instrument was based on 2 qualitative studies, with items derived from maternal interviews and available literature. The first version of the instrument included 67 items presented in a forced-choice format along with 3 open-ended questions and demographic information items.44,61 The first revision of the instrument was based on a literature review, pilot testing, and an expert panel's rating on content validity.44 The pilot testing was performed on mothers of infants from level II and III NICUs (7 mothers, infants of 32–37 weeks of gestation, with >1500 g birth weight), which led to a 45-item tool with 3-point Likert scale. Two additional studies55,60 included parents of preterm and term infants discharged from level I, II, and III NICUs. The rationale for using a level I nursery was to determine what were parent concerns of a healthy newborn versus the concerns of parents of a premature or sick newborn. A factor analysis with varimax rotation was performed to explore latent structure of the construct of transition. Items with inter-item correlations greater than 0.20 converged with varimax rotation into 5 factors with loadings from 0.40 to 0.86 accounting for 69% of the variance and were conceptually consistent with the 5 concepts of the Transition Model. The Cronbach α for total scale and subscales ranged from 0.57 to 0.74, considered good enough for newly developed instrument.
Development of the Transition Questionnaire instrument was finished in 1994. The instrument aims to measure concerns and perceptions of the mothers of newborn infants after discharge from a NICU/hospital. The Transition Questionnaire consists of 4 parts. The first part consists of 37 items that ask mothers about their concerns and perceptions after discharge using a 5-point Likert scale. Items on the scale measure the degree of disagreement or agreement with each statement of the questionnaire, from 5 (strongly agree) to 1 (strongly disagree). The second section of the questionnaire considers informational needs and available support for mothers (3 multiple-choice items). The third section of the questionnaire asks the parents what concerns they had after discharge and includes 3 open-ended questions. The purpose of the open-ended questions is to confirm the quantitative data with qualitative findings. The fourth section of the questionnaire gathers general demographic information about the mother (21 items). The dimensions of the instrument are Informational Needs (6 items), Stress and Coping (15 items), Parent-Child Role Development (9 items), Grief (4 items), and Social Interaction (3 items). To reduce respondent bias, items of the questionnaire are positively and negatively worded; 17 items should be reversed when scoring the questionnaire. Scores on each item of the Likert format scale are summed for the total score, as well as for subscales. The possible range of scores is 37 to 185, with the larger score reflecting fewer problems after discharge. The item readability level is the fifth US grade; time to complete the tool is approximately 15 to 25 minutes, including open-ended questions. Examples of the items for each subscale are (1) “I feel competent in caring for my child,” (2) “I want more information about how to keep my child healthy,” (3) “I believe no one really understands how I feel,” (4) “The people I live with have been supportive of me,” (5) “I cannot control my child's health.” (The Transition Questionnaire is available for use upon request from the corresponding author.)
There is limited information about the Transition Questionnaire's reliability and validity. The instrument has been used for dissertations and, often, in countries outside the United States (Canada, South Korea, Thailand, the Netherlands, Russia, and Jordan), with the results neither published nor easy to find because of language differences. Concurrent validity was established in 1 study of parental experiences of technology-dependent infants at home.62 One correlational descriptive study from Russia concerned with evaluation of parental experiences and parental perception of services provided after discharge from NICU reported a Cronbach α value of 0.70 for the total scale, but not for subscales.32 Considering good face validity of the tool for mothers of preterm infants after discharge, further testing and development of the instrument is warranted.
Vast amounts of research since the 1980s has documented the difficulties parents experience in parenting a preterm infant or taking an infant home after a hospital stay. In recent years, the focus on readmissions of these infants has grown. Yet, clear linkages between parent transition from hospital to home and readmissions in the population of preterm infants have not been fully examined. Why has parental transition been explored for more than 3 decades without an examination of the relationship between parental transitional challenges after discharge and infant readmissions with associated healthcare costs? Studies in the adult population after discharge have showed that less than half of the patients are able to list their diagnoses, names of medications, and their purpose or adverse effects63; up to 20% of the discharge summaries lack information about hospital treatment; up to 40% of summaries do not mention discharge medications; and 92% of discharge summaries lack information of patient or family counseling.64 Would these findings hold true for the population of parents of newborn infants especially with those prematurely born and hospitalized initially? How much do parents understand and know about their infant, his/her health risks? Is parental knowledge about the infant's health and needed care related to readmissions? Are parenting psychosocial challenges related to rehospitalizations and increased services use? Why does readmission occur—is it premature birth-related only or related to parenting and caregiving issues as well? What are the experiences and needs of parents in the period between hospital discharge and rehospitalization?
One model of transitional care for older adults provides a clear example of translating science into practice. Naylor's Transitional Care Model, developed through a series of research studies and implemented by a multidisciplinary team at the University of Pennsylvania, is a practice model consisting of interventions aimed at improving the outcomes of elder/older adults with various medical conditions.48–50,65,66 This model of transitional care represents professional care interventions provided to patients who are transferring from one setting to another (within the hospital or after hospital to home or to another environment). The interventions in this model consist of an advanced practice nurse's visits to a patient during hospitalization and after discharge as well as telephone follow-up to improve the patients' outcomes through care coordination to prevent complications, rehospitalizations, and decrease healthcare costs.65 The intervention program was tested using randomized controlled trials and was found to be effective for decreasing the patient's health problems and rehospitalizations.
The Transitional Care Model has been built on the seminal work of Brooten and colleagues67 in 1986 that showed the safety and cost-effectiveness of early discharge of low-birth-weight infants who were followed up by advanced practice nurses before and after discharge. However, the consequences of the seminal work of Dr Brooten did not continue as Naylor's did. The demonstrated cost savings did lead to immediate changes in the earlier discharge of high-risk and preterm infants, but not to the follow-up or care coordination that was included in the original study. Earlier discharge without appropriate follow-through care may put infants at risk for developing avoidable complications and rehospitalizations. Thus, patient safety is at risk. In 1999, the Institute of Medicine (IOM) published To Err is Human report that kicked off the Quality Chasm series from the IOM calling for 5 competency areas for health professions: patient-centered care, interdisciplinary teams, evidence-based medicine, quality improvement, and information technology.68,69 Since that time, more emphasis has been placed on seeking evidence-based interventions and models of care that promote patient safety and quality, and are done within the context of patient-centered, interprofessional care. More recently, research in the follow-up care for newborns and their families after discharge placed in the second quartile of the national priorities for comparative effectiveness research.70 Transition in parents after hospital discharge can be influenced by the health of an infant, discharge readiness of a parent, timeliness of discharge, and appropriateness of post–hospital care. However, what impact does parental transition have on the potential for rehospitalization? Naylor's Transitional Care Model is one example of connecting the patient's transitional problems with avoidable rehospitalizations. The linkage between parental transition and associated avoidable rehospitalization is applicable to the premature infant and parent population and this is an area ripe for nursing research. Research is needed to determine whether coordinated post–hospital care with consideration of the parental transitional challenges decreases rehospitalizations. There are conceptual models and instruments available that can guide such research. For the parental transition with a preterm infant after a NICU stay, Kenner's Transition Model and Transition Questionnaire could be refined and modified, and an adequate model of transitional care for parents of preterm infants that incorporates the IOM core competencies could be developed. The phenomenon of transition needs to be addressed more thoroughly in healthcare research. It has even more relevance at present because the emphasis on safety and quality as well as cost containment continues.
Premature birth, the associated parental transitional problems, and infant readmissions represent a myriad of complex problems. Parenting of the preterm infant is challenging. Parents of prematurely born infants discharged from the NICU undergo 2 major transitions, transition to parenthood and transition from hospital to home. The phenomenon of transition is lacking an agreed-upon definition and conceptualization; the measurement of the transition is complicated. Rehospitalizations can be viewed as a potential negative outcome of the transition from hospital to home; however, there are few studies conducted to examine the phenomenon of transition in parents of preterm infants that might link the adverse outcomes in this population to transitional problems in parents. There are conceptual frameworks and research instruments available that could/should be adapted or further developed for the use in transitional research. There is a need for an evidence-based assessment of the parental transition from hospital to home to design appropriate interventions and target healthcare services for those in need, thus providing effective and efficacious care.
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