Transicion de los hospitales del pasado a hoy

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1. Continuing Education
J Perinat Neonat Nurs
α
Volume 26 Number 1, 81–87
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CopyrightCα2012 Wolters Kluwer Health|Lippincott Williams & Wilkins
DOI: 10.1097/JPN.0b013e318243e948
TransitionFromHospitaltoHomefor
ParentsofPretermInfants
Marina Boykova, MSc, RN; Carole Kenner, PhD, RNC, FAAN
ABSTRACT
Research on the phenomenon of transition spans several
decades. This article discusses the transition from hospital
to home and the challenges parents of preterm infants ex-
perience during a neonatal intensive care unit stay and after
discharge. The article explores the link between parental
problems and rehospitalizations and the need for accurate
measures of transitional concerns. An example of a theo-
retical model and instrument is described.
Key Words:discharge, premature, rehospitalization,
transition
I
ncreased survival of infants born prematurely (<37
completed weeks of gestation) and earlier discharge
practices during the last decades, raise the ques-
tion of the adequacy of post–hospital care and rehos-
pitalizations. Premature infants suffer from a variety of
health problems related to the immaturity of their vi-
tal organs, often requiring additional care and support
after discharge. Follow-up clinics and community out-
reach programs have focused on the prevention of com-
plications 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)
Author Affiliations:University of Oklahoma (Ms Boykova); and
Northeastern University (Dr Kenner), Boston, Massachusetts.
Disclosure:The authors have disclosed that they have no significant
relationships with, or financial interest in, any commercial companies
pertaining to this article.
Corresponding Author:Carole Kenner, PhD, RNC, FAAN, North-
eastern University Bouv´e College of Health Sciences School of
Nursing, 102 Robinson Hall, 360 Huntington Ave, Boston, MA 02115
([email protected]).
Submitted for publication: August 2, 2011; revised: November 21, 2011;
Accepted for publication: November 27, 2011
rehospitalizations can be up to 50%.
2,3
Late preterm in-
fants, 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 in-
fants also use primary care and special services more
often than term infants do. Wade and colleagues
6
found
that preterm infants experienced 20 to 29 visits to pedi-
atric offices during the first year after NICU discharge;
Leijon and colleagues
7
reported that 74.4% of the
preterm infants used specialist services during the first
year of life compared with 26.3% of term infants af-
ter 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 de-
partment visits are not necessarily related to prema-
ture 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 rehospital-
izations 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 par-
ents 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.
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2. PARENTING PRETERM INFANTS
Throughout the last decades, research has documented
difficulties parents have in parenting their preterm in-
fants, and especially those whose infants were hospi-
talized after birth. Separation from an infant and the
inability to fulfill parental responsibilities while in a hos-
pital, the unusual appearance of an infant, and his/her
lack of responsiveness impair parental infant attach-
ment; thus, decreasing parental self-confidence and fos-
tering feelings of being a “surrogate parent.”
10
Moth-
ers 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 un-
certainty 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 hospitaliza-
tion, mothers exhibit symptoms of posttraumatic and
acute stress disorder.
13,14
In the long term, parents may
develop inadequate parenting styles such as compen-
satory parenting.
15
Informational needs, concerns over
the special needs of their infant, and their own caregiv-
ing 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 vul-
nerability, which in turn can lead to greater use of
healthcare services.
17,18
The effects of the initial hos-
pitalization and critical illness during the neonatal pe-
riod 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 follow-
ing challenges in parents of preterm infants experienced
both within the hospital and afterwards:
1. Stress and anxiety
20,21
;
2. Depression and grief
16,22,23
;
3. Decreased confidence and self-efficacy in
parenting
24,25
;
4. Impaired parent-child interactions and role
development
26−29
;
5. Need for additional knowledge and caregiving
skills
30,31
;
6. 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 aprocess
of a change, theresultof a change, or anadaption
to a change.Transitionhas been defined as “both a
result ofand aresult inchanges in lives, health, re-
lationships, and environments,”
35 (p13)
“periodsbetween
fairly stable states,”
36 (p238)
“movingfrom one stage to
another,” “leavingbehind the familiar andtryingsome-
thing new,”
37 (p894)
“a process of convolutedpassage
during which peopleredefinetheir 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 lin-
ear 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 es-
pecially difficult for parents of preterm infants is the
fact that there are at least 2 major transitions present—
transition to parenthoodandtransition from hospital
to home, both extremely challenging especially in the
case of parenting a preterm infant after birth hospi-
talization. Indeed, multiple types of transitions as de-
scribed by Meleis and colleagues
38,39
—situational, de-
velopmental, 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 transi-
tion that is supposed to increase parental stress
40
;at
the same time, some researchers considered preterm
birth and parenting a preterm infant as a type of spe-
cial parental crisis.
41,42
The dual nature of transition in
parents of preterm infants is reflected in the nursing lit-
erature. Kralik and colleagues
34
excluded transition to
parenthood/motherhood from her review on transition
and included only “disruptive” ones (such as with ill-
ness), whereas Nelson
43
in her review on transition to
motherhood, excluded studies related tomotheringof
preterm infants. The second type of transition,transi-
tion from hospital to homeor to other healthcare set-
tings 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, inad-
equate caregiver education, incomplete communication
among the team members and patients, faulty coordi-
nation of post–discharge services that resulted in less
than optimal quality of care, and increased healthcare
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3. costs due to potentially avoidable complications and
rehospitalizations.
Measurement of transition, as well as its defini-
tion, has been complicated due to the multifaceted
dimensions of the construct. In accordance with the
complexity of the transition phenomenon, investiga-
tors 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 depres-
sion, 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 ex-
ist 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, theTransition
Modeldeveloped 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: Informa-
tional Needs, Stress and Coping, Grief, Social Interac-
tion, and Parent-Child Role Development. The main fea-
ture 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 in-
formation, behavior, and infant development—all in-
formation necessary for parents to provide care and
cope with transition from hospital to home. Social In-
teraction is the parents’ ability to socialize after their in-
fant 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 par-
ents. 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 prob-
lems in the neonatal period, and parental abilities to
care and cope, with coping abilities depending on re-
sources available (informational, tangible, and social).
The Transition Model suggests the following relation-
ships 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 De-
velopment
•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 measur-
ing 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 be-
tween concepts; and the concept of professional sup-
port need is not included. However, this is the only
situation-specific model that has been used with par-
ents of preterm infants and could be applied to that
population after further development and validation.
Transition questionnaire
The Transition Questionnaire is a multidimensional tool
specifically developed for measuring the complex phe-
nomena of transition in parents of newborn infants af-
ter a NICU discharge.
44,55,60
Development of the instru-
ment was based on 2 qualitative studies, with items
derived from maternal interviews and available litera-
ture. 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 studies
55,60
in-
cluded 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 ex-
plore latent structure of the construct of transition. Items
with inter-item correlations greater than 0.20 converged
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4. 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 Cronbachαfor total scale and
subscales ranged from 0.57 to 0.74, considered good
enough for newly developed instrument.
Development of the Transition Questionnaire instru-
ment 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 state-
ment of the questionnaire, from 5 (strongly agree) to
1 (strongly disagree). The second section of the ques-
tionnaire considers informational needs and available
support for mothers (3 multiple-choice items). The third
section of the questionnaire asks the parents what con-
cerns they had after discharge and includes 3 open-
ended questions. The purpose of the open-ended ques-
tions is to confirm the quantitative data with qualita-
tive 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 re-
duce 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 reflect-
ing 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 coun-
tries 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 estab-
lished in 1 study of parental experiences of technology-
dependent infants at home.
62
One correlational descrip-
tive study from Russia concerned with evaluation of
parental experiences and parental perception of ser-
vices provided after discharge from NICU reported a
Cronbachαvalue 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.
DISCUSSION
Vast amounts of research since the 1980s has docu-
mented the difficulties parents experience in parenting
a preterm infant or taking an infant home after a hos-
pital stay. In recent years, the focus on readmissions
of these infants has grown. Yet, clear linkages between
parent transition from hospital to home and readmis-
sions in the population of preterm infants have not
been fully examined. Why has parental transition been
explored for more than 3 decades without an exami-
nation of the relationship between parental transitional
challenges after discharge and infant readmissions with
associated healthcare costs? Studies in the adult popu-
lation 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 effects
63
;
up to 20% of the discharge summaries lack informa-
tion about hospital treatment; up to 40% of summaries
do not mention discharge medications; and 92% of dis-
charge 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 re-
lated to rehospitalizations and increased services use?
Why does readmission occur—is it premature birth-
related only or related to parenting and caregiving is-
sues 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’sTransitional Care Model,developed
through a series of research studies and implemented
by a multidisciplinary team at the University of Penn-
sylvania, 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 interven-
tions provided to patients who are transferring from one
setting to another (within the hospital or after hospital to
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5. 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 com-
plications, rehospitalizations, and decrease healthcare
costs.
65
The intervention program was tested using ran-
domized controlled trials and was found to be effective
for decreasing the patient’s health problems and rehos-
pitalizations.
The Transitional Care Model has been built on the
seminal work of Brooten and colleagues
67
in 1986 that
showed the safety and cost-effectiveness of early dis-
charge of low-birth-weight infants who were followed
up by advanced practice nurses before and after dis-
charge. However, the consequences of the seminal
work of Dr Brooten did not continue as Naylor’s did.
The demonstrated cost savings did lead to immedi-
ate changes in the earlier discharge of high-risk and
preterm infants, but not to the follow-up or care coor-
dination that was included in the original study. Earlier
discharge without appropriate follow-through care may
put infants at risk for developing avoidable complica-
tions and rehospitalizations. Thus, patient safety is at
risk. In 1999, the Institute of Medicine (IOM) published
To Err is Humanreport that kicked off theQuality
Chasmseries from the IOM calling for 5 competency
areas for health professions: patient-centered care, in-
terdisciplinary teams, evidence-based medicine, qual-
ity 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 new-
borns and their families after discharge placed in the
second quartile of the national priorities for compara-
tive 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 prema-
ture infant and parent population and this is an area
ripe for nursing research. Research is needed to de-
termine whether coordinated post–hospital care with
consideration of the parental transitional challenges de-
creases 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 Transi-
tion Questionnaire could be refined and modified, and
an adequate model of transitional care for parents of
preterm infants that incorporates the IOM core compe-
tencies could be developed. The phenomenon of transi-
tion needs to be addressed more thoroughly in health-
care research. It has even more relevance at present
because the emphasis on safety and quality as well as
cost containment continues.
CONCLUSION
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 dis-
charged 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 mea-
surement of the transition is complicated. Rehospitaliza-
tions 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 assess-
ment 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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