Home care of the premature baby

Original Article
Home care of the premature baby*
O cuidado da criança prematura no domicílio
El cuidado del niño prematuro en el domicilio
Aisiane Cedraz Morais1, Marinalva Dias Quirino2, Mariza Silva Almeida3
ABSTRACT
Objectives: To characterize and describe home care to the premature baby provided by mothers or other caretakers. Methods: A
descriptive qualitative study was used. Seven caretakers were interviewed in their homes. The data were collected through semi-structured
interview and analyzed using content analysis. Results: The emerged categories were: caring for the premature baby at home; living and
interacting with the premature baby; and, the importance of social support in caring for the premature baby. Conclusions: The mothers, as
caretakers, provided proper care to the premature baby, expressed concerns regarding the baby’s development and growth, and voiced the
need of support to deliver proper care.
Keywords: Infant premature; Infant care; Caregivers; Mother-child relations
RESUMO
Objetivos: Identificar o cuidado domiciliar prestado pela mãe e/ou responsáveis pelo cuidado da criança prematura; descrever o cuidado
prestado ao prematuro no domicílio e os aspectos que interferem neste processo. Métodos: Estudo descritivo, qualitativo. Foram entrevistadas
sete cuidadoras de prematuros nos seus domicílios. Os dados foram coletados por meio de entrevista semi-estruturada e observação
descritiva, analisados pela técnica de análise de conteúdo. Resultados: As categorias foram: o cuidar da criança prematura no domicílio;
preocupações que emergiram convivendo com o prematuro; a importância do suporte social para o cuidar do prematuro. Conclusões: As
mães, cuidadoras, desempenhavam adequadamente o cuidado; explicitaram preocupações com crescimento e desenvolvimento do filho, com
as intercorrências apresentadas e, também, a necessidade de suporte para este cuidar.
Descritores: Prematuro; Cuidado do lactente; Cuidadores; Relações mãe-filho
RESUMEN
Objetivos: Identificar el cuidado domiciliario prestado por la madre y/o responsable del cuidado del niño prematuro; describir el cuidado
prestado al prematuro en el domicilio y los aspectos que interfieren en este proceso. Métodos: Estudio descriptivo, cualitativo. Fueron
entrevistadas siete cuidadoras de prematuros en sus domicilios. Los datos recolectados por medio de una entrevista semi-estructurada y
observación descriptiva, se analizaron por la técnica del análisis de contenido. Resultados: Las categorías fueron: el cuidar del niño
prematuro en el domicilio; preocupaciones que emergieron conviviendo con el prematuro; la importancia del soporte social para el cuidar del
prematuro. Conclusiones: Las madres, cuidadoras, desempeñaban adecuadamente el cuidado; explicitaron preocupaciones con el crecimiento
y desarrollo del hijo, con las ocurrencias presentadas y, también, la necesidad de soporte para este cuidar.
Descriptores: Prematuro; Cuidado del lactante; Asistencia domiciliaria; Cuidadores; Relaciones madre-hijo
* Article extracted from the Master’s degree dissertation “Premature child care at home”, presented to the Bahia Federal University (UFBA) School of Nursing.
1 Master, Assistant Professor at the Vale do São Francisco Federal University – UNIVASF – city of Petrolina, state of Pernambuco, Brazil.
2 PhD., Adjunct Professor of the discipline “Nursing in Child and Adolescent Health Care” at the Bahia Federal University School of Nursing – UFBA –
city of Salvador, state of Bahia, Brazil.
3 PhD., Adjunct Professor of the discipline “Women’s Health Care” at the Bahia Federal University School of Nursing – UFBA – city of Salvador, state
of Bahia, Brazil.
Corresponding Author: Aisiane Cedraz Morais
Received article 13/02/2008 and accepted 25/08/2008
R. Miguel Silva Souza, 590 - Cond. Country Club, QM, n.9 - Palmares - Juazeiro - BA
Cep: 48901-765. E-mail: aisicedraz@hotmail.com
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INTRODUCTION
Theoretical Framework
This study was based on human being care, with an
Neonatal care has substantially advanced in the last emphasis on premature child care and the Kangaroo
decades, with the introduction of more efficient Mother Care as a strategy to care for low-weight children.
therapeutic resources, more modern technological
This care consists in transpersonal efforts from one
resources and more specialized human resources.
human being to another human being, in the sense of
These technical-scientific advances cause biopsychosocial protecting, promoting and preserving humanity, helping
care to have a less important role and, at times, key aspects people to find meaning in a situation involving disease,
not to be performed during care as well, such as the suffering and pain, as well as in existence. Care helps the
presence of the family, individualized care or valuing other person to obtain self-knowledge, control and self-
individual socio-cultural characteristics.
healing(4).
Given this context, the need for more humane hospital
Premature child care, due to its peculiarities, requires
care for the premature newborn* and family members knowledge and the establishment of assistance aimed at
stand out, valuing the biopsychosocial well-being during its needs, covering specific care during hospitalization and
the child’s health recovery and rehabilitation, the formation its maintenance after hospital discharge.
and maintenance of the mother-child emotional bond,
The premature newborn is an infant at risk, susceptible
and care that continues at home.
to several problems resulting from the immaturity of the
Following parents during the period of central nervous, immunological, cardiovascular,
hospitalization, observing if contact with their children respiratory, digestive and renal systems(5). Another
is maintained and how it is made, is a way to support relevant aspect is the fact that the child’s early birth and
child recovery. This follow-up is important for them to hospitalization in the Neonatal Intensive Care Unit (NICU)
know their child, identify its needs and learn how to can cause parents to feel incomplete and unprepared to
care for it when it’s discharged, or even before that, fulfill their roles. This is because there is a psychological
while yet in the hospital(1).
preparation during pregnancy, associated with the
Hospital discharge of the premature child leads to woman’s stages of body changes, so that, at the end of
special care, due to its higher organic and emotional nine months, she experiences a feeling of readiness to
vulnerability. Both the parents and the child have their meet all the infant’s needs: feeding, hygiene, affection and
share of participation and responsibility in this process caring(6-7).
of care, where each mother-child bond is unique in its
In this way, parental assistance and their participation
dynamics and history(2-3). Thus, when planning to discharge in child care have been prioritized by neonatal units. The
a premature newborn, it is essential to balance its well- infant’s long period of hospitalization and lack of affection
being and stability with the family’s ability to care for it and care increase maternal and family stress, which can
and the availability of support services in the community, harm the maintenance of a bond and attachment(8).
enabling the maintenance of care for the premature child
The mother-child bond is the most solid relationship
at home.
existing among human beings, and in this relationship there
The responsibilities of the family are associated with is something unique, guaranteed during pregnancy and
the support they can provide the newborn, their ability after birth. The mother guarantees her child’s survival, as
to care, their understanding about the child’s satisfaction it continues to be dependent on her during a relatively
responses, and the social, financial, and cultural issues that long period(7).
influence how well the newborn is understood and
In this sense, the nurse in the neonatal unit must facilitate
accepted by them.
the early contact between parents and premature infants,
Based on these reflections, the following problem was aiming to maintain the bond and attachment, considering
formulated: how is the premature child cared for at home? this to be a gradual process, which may take more time
than the first days or weeks of a full-term infant’s postnatal
OBJECTIVE
period(8). The support and safety premature children’s
parents are given by the nurse are essential for them to
This study aimed to: identify home care provided by understand the situation of risk the infant is exposed to
the mother and/or those responsible for care of the and also to learn how to care for it at home(9).
premature child; describe care given to the premature
Among the strategies that enable parents to understand
child at home; and describe aspects that interfere with this, the Kangaroo Mother Care (KMC) should be
the premature child care process.
emphasized, as it consists in early skin-to-skin contact
between the mother and her newborn, thus promoting
breastfeeding, temperature control, sensory stimulation
* In this study, the terms “premature newborn”, “premature infant”,
and “premature child” will be used as synonyms.
and emotional bond strengthening(10). KMC enables the
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26
Morais AC, Quirino MD, Almeida MS.
family, child and health care team to come closer together,
Home visits of each caregiver-child pair occurred in
as well as the development of humane-oriented care.
two moments: the first between eight and 14 days after
hospital discharge, and the second between eight and 10
METHODS
days after the first one. A total of two visits were made,
aiming to reach the objectives proposed by the study.
This study was descriptive, with a qualitative approach, Each visit lasted one hour on average. These visits were
and it was performed between May and August 2007. booked during researcher’s contact with individuals in the
The homes of children who had been hospitalized in the hospital, after an Informed Consent Form was signed,
Inácia Pinto dos Santos Hospital (HIPS), located in the while the second visit was booked during the first one.
city of Feira de Santana, were the study location.
After data collection, Thematic Content Analysis(12) was
Research was performed in accordance with the employed to find out the mothers’ subjectivity in the
Resolution n° 196/96. Confidentiality and privacy were premature child care process at home.
guaranteed by participants’ identification code. This
Data analysis was performed with the codification of
research project was approved by the Feira de Santana interviewers’ speech, associating them with observation
State University Research Ethics Committee, under data and theoretical foundation. Codes were grouped
Process n.° 087/2007.
according to similarities of meaning into specific
A total of seven mothers of premature infants categories.
participated in this study. Criteria for inclusion were as
follows: to have a hospitalized premature child receiving
RESULTS
KMC at the HIPS, between April and June 2007; to live
in the city of Feira de Santana; and to have already received
Analysis of premature child care at home enabled this
discharge from hospital. Initially, the number of study to: know what the mother (caregiver) and family
interviewees was not restricted, based on the supposition experienced in this context; know how these children were
that interviews would be carried out until they became cared for; and identify what aspects were involved in this
repetitive and/or met the research objective.
process, as well as the concerns that arise when living
Data were obtained using the Descriptive Direct with the premature newborn.
Observation and Semi-Structured Interview techniques.
The categories found were as follows: Caring for the
This observation was performed in a completely free premature child at home; Concerns arising from living
manner, even though the field investigator must always with the premature child; The importance of social
be focused on what constitutes the object of study(11). In support to care for the premature child.
this study, the observation focused on the following
aspects: Home space; Caregiver-child relationship; Care
Caring for the premature child at home
provided during investigator’s visit; Family participation
The thematic universe of premature child care is
as support for caregiver; and Home access to/distance revealed through general aspects of caring for the
from health services. In addition, other aspects that premature infant, the way the caregiver perceives the
appeared spontaneously in each context were recorded premature infant, and how this infant is given care.
in a Field Journal.
Mothers considered the premature child as fragile and
This Field Journal was designed from observations susceptible to complications due to its size, as expressed
made by the researcher during visits to the children’s by the following statements:
homes. They were recorded spontaneously, lacking
theoretical rigor, but involving notes that were relevant
“He’s so tiny it seems he’s going to fall from my hand” (Dália,
to understand the object of study. These notes were Int.1).
recorded after each visit, in the researcher’s home.
“As she was born early, [...] she’s more vulnerable” (Hortência,
Semi-structured interviews were used to enable greater Int.1).
interaction between researcher and the individual under
“She’s too fragile… to catch such bad flu, she’s too fragile to
study, in addition to enabling perception of feelings, resist” (Azaléia, Int.2).
emotions and values. Guiding questions were the
following: How do you take care of this premature child
By perceiving the premature child’s body as delicate
at home? What is it like to care for this child? What aspects and small, subtle in its size, mothers may feel unprepared
interfere with this care?
and incapable of caring, or develop a distorted perception
Data collection occurred at the home of seven of their child, focusing more on the deficiencies and
caregiver-child pairs and, coincidently, caregivers were the vulnerabilities, rather than on the existing positive resources.
mothers, as they were the ones caring for the premature As a result, they begin to overprotect their child(13).
children full time.
The mother shows apprehension about not knowing
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Home care of the premature baby
27
how to meet her child’s requirements or about exposing they learned during the KMC program, such as the use
it to risky situations, as reported below:
of the kangaroo mother position, wrapping this infant
with cotton and blankets, and the use of a thermometer
“I always look at him carefully… because he was premature… to control the temperature.
The nurses always said that we had to give him special care, you
know… always keep an eye on him, not leave him alone for long”
“I always carry him so he stays quiet… but I don’t have the
(Camélia, Int.1.).
kangaroo pouch here (laughs) I use a blanket with him here in the
“Because of his size and the fact that he’s premature. For this bedroom” (Camélia, Int.1.).
reason, I think care is more personalized and intense” (Rosa, Int.1.).
“I’m always using the thermometer to see if her temperature’s
“But I know that care is much (emphatic) greater than that good, ’cause I’m always warming her, I use cotton in her hands and
given to a full-term child” (Hortência, Int.1.).
feet” (Jasmim, Int.1.).
The following speech reveals how mothers meet their
By recognizing the susceptibility of the premature infant
child’s basic needs (feeding, hygiene, sleep and rest, among from its immunological system’s vulnerability, mothers
others), including emotional support (affection and prevent infections with visit restriction, utensil care and
playfulness):
vaccination.
“I give him a bath… always at the right time, I give him milk,
“Nobody can come in before he weighs three kilograms [...]
I do all the usual things [...] I give him a bath and affection, I do a we’re very careful. And we boil the bottle every day” (Amarílis,
lot of things there” (Dália, Int.1.).
Int.1.).
“I give him a bath, always at the same time, everyday, [...] then,
“Visits are a real problem [...] I say he can’t get visits, then I
I breastfeed him, and put him to sleep. [...] We play, laugh, oh, it’s say he was born premature. And that he can’t have much contact
so good (laughs)” (Amarílis, Int.1.).
with people.” (Hortência, Int.2.).
“I take care of him with all my love and care [...] I wake up,
“I think it’d bring bacteria from the streets, this is the information
breastfeed him, give him a bath at the right time, and the medicine I got, I think it’d bring something from the streets, I certainly wouldn’t
at the right time as well” (Rosa, Int.1.).
let anybody pick him up, everyone who comes here wants to pick him
up [...] then, I try to avoid this. (Hortência, Int.2.).
It was possible to describe and observe how mothers
perform care for feeding, hygiene, warming and infection
Visit restriction is a measure that contributes to prevent
prevention.
infections. Thus, parents must prevent their child from
In terms of feeding, mothers prioritize exclusive coming into contact with people with a cold or the flu.
breastfeeding. Mother’s milk is valued and they can identify Moreover, they must explain to visitors that they will have
the necessary changes of breastfeeding frequency and plenty of time to visit the child as it is staying at home, so
amount. Though incipient, concerns about the moment they do not need to gather together(15).
of weaning arise, especially in terms of what the infant
Other protective measures used were: hand washing;
should be offered:
bottle and pacifier boiling, perfume and air current
restriction. These home measures were mentioned by
“To only give mother’s milk until the sixth month, then introduce Balbino(5), showing that premature infants’ parents prevent
other foods.” (Camélia, Int.1.).
home infection with hygiene habits at home, general
“I breastfeed him at the right time, burp him, and then he goes cleaning, and care for the newborn, such as hand washing
to sleep. When he wakes up… he wants to have milk again… So, to change the infant’s clothing and hygiene during food
I go give it to him.” (Dália, Int.1.).
preparation.
“Then, it’s so relative for me to describe the times, she doesn’t
Vaccination constitutes one efficient strategy to prevent
follow diet times as she did in the hospital. She… sometimes it’s contagious infectious diseases, which are very severe when
every three hours, sometimes two and a half, sometimes three and a afflicting small premature children. For this reason,
half.” (Hortência, Int.1.).
probably, mothers become concerned, as they recognize
that their children need to be vaccinated. However, some
Human milk is a basic recommendation in the of them revealed that vaccines are too strong to be
premature child’s diet, as the milk produced by its mother administered or that they were discouraged by basic health
during the first month after birth has higher levels of unit professionals, who showed different practices to
proteins, sodium and chloride than the milk of the mother vaccinate babies and used, as a reference point, the infant’s
of a full-term newborn, thus constituting the best food age or weight.
for these children(14).
To keep the infant warm, mothers reproduce what
“I haven’t got around to the vaccine, nor did I look for it. Only
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Morais AC, Quirino MD, Almeida MS.
after the child weighs more than three kilograms. (Amarílis, Int.1.) on the guidance received during the Kangaroo Mother
“Then, due to this shot in the leg being very strong, [...] because Care program.
she had one today, then, in two days, she’ll turn two months old, and
there’s another vaccine she’s got to be given at two months. So, not to
The importance of social support to care for the
be given two shots in such short period, and because her weight’s two premature child
kilos and two hundred, they told me to give her this shot when she
In this study, social support covers the support network
turns two and a half months and has gained some weight” (Jasmim, the caregiver has for the home care/caring process. It
Int.1.).
includes the support provided to the family or other
people who are willing to help this caregiver; and the
Concerns arising from living with the premature service organization that offers assistance to the individual
child
and health, social, educational and spiritual support.
In this study, maternal concerns arose about the child’s
The mother was found to be the one who cares for
growth and development and also about the the premature infant, reaffirming the woman’s cultural
complications that occurred to them.
responsibility for the task of child care, particularly when
Apprehension about these complications includes it comes to a premature child who requires special care(5).
exacerbation of some pre-existing disease, the appearance It should be emphasized that grandmothers and parents
of other diseases and adequacy of behavior when help the caregiver, though in an indirect way, with support
symptoms are present.
actions.
Concern about the child’s growth was associated with
The mother’s training to care for the infant at home
the increase in height and especially in weight. For the takes place during the premature child’s hospitalization,
mothers, the only significant reference point is whether seeking to develop abilities and pass on specific
the child is gaining weight, regardless of this gain being knowledge. The literature emphasizes the importance of
what was expected.
preparing mothers for hospital discharge, reducing
Another concern found was about the child’s maternal anxiety and increasing self-confidence in home
development. Aspects that mothers adopted to assess this care. In this way, family’s adaptation to the child, after
development arose, with the observation of movements discharge from hospital, is facilitated(15).
the child can perform standing out.
The following accounts confirm how KMC
contributed to the home care learning process:
“She’s already staying in the car by herself ” (Jasmim, Int.2.).
“She used to stay quiet in bed. Now, she doesn’t stay quiet in
“Help from some people who were there as well, and who’ve
bed. She already leaves her place, she’s already moving, she raises encouraged us… some professionals [...]. In the Kangaroo, they
her head” (Hortência, Int.2.).
always guided us” (Rosa, Int.1.).
“’Cause in the Kangaroo we experience how we’re gonna care
Caring for this child implies three challenges: to at home, you know, ’cause I spent one week there, taking care of
guarantee its immediate prognosis, i.e. its survival; to him almost all by myself. On the first day the nurse helped me, but
minimize its morbidity; and to provide a good late on the other days I was alone, doing as I was expected to do at home
prognosis. For parents of a premature child, the main [...] That was practice already… ’cause I gained more experience
concern after birth and during hospitalization is about its to care for him” (Camélia, Int.2.).
survival, whereas, after discharge from hospital, it
becomes about health maintenance. This is due to the
Associated with the KMC routine and practice,
perception and observation that health risks to the child caregivers received information that guided them as to
still exist, and also that the premature newborn can have how to care in the social space of a home. In addition to
complications, even when clinical stability is reached.
this support, follow-up of this child is essential.
This follow-up must be conducted until the child
“The only thing that worries me now is the reflux” (Hortência, reaches school age and must be periodic as well, with the
Int.2.).
first visit taking place about one week after hospital
“She was the kind of child who’d been through many things, discharge to assess the premature child’s adaptation to
she’s already… already got cyanosis, you know, out of the blue, the home. Subsequent visits must be made every two
then… we’d be frightened if this ever happened again” (Jasmim, months in the first semester, and every three months until
Int.1.).
the 18th month. From two to four years of age, visits can
“He’s got heart problems, [...] he’s also got reflux, and his be made every six months, provided the child is
pressure is high as well” (Amarílis, Int.1.).
progressing well, and, once a year, subsequently(16).
However, among the children, only one had a follow-
Care for the complications the child had was based up close to what was expected, including visits and exams
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29
in a private health service, as reported below:
access to health services, restricted financial condition,
interruption of the KMC program’s third stage, and lack
“For the time being I’m not having a follow-up” (Azaléia, Int.1.). of public policies that help premature children to be
“Here at the health center there’s no pediatrician, you know…so followed, results in inefficient or even inexistent follow-
it’s been hard” (Hortência, Int.1.).
up, exposing the premature newborn to a higher
“I haven’t made any appointments for him yet [...] so, I wanna morbimortality risk.
see a pediatrician, I’m gonna do the child care guidance and make
In this sense, perinatal care involves: countless
all appointments this week” (Rosa, Int.1.).
difficulties, instead of guaranteed access; inequality, where
“I’ve done the ultrasound, [...] the ear test [...] For now, I’m there should be equality; disorganization and
going to a private clinic” (Hortência, Int.2.).
fragmentation, instead of system hierarchy and
regionalization; as well as frequent and concerning
DISCUSSION
technical-scientific inadequacies. These, as a result, represent
challenges for public management of this type of care(20).
To care for a premature infant, mothers compare it to
a full-term infant and recognize that the former has
FINAL CONSIDERATIONS
peculiarities that require greater attention and dedication.
This special care and the mother’s concern about constantly
Situations experienced by the mothers and family
watching the premature child are justified by its birth members, involved in the premature child care process at
condition, which demanded complex care.
home, could be found by this study.
Observations made showed that adequate care is
Observations made showed that adequate care is
provided to the child for its hygiene, feeding, and infection provided to the child for its hygiene, feeding, and infection
prevention. As regards the child complications cared for prevention. As regards the child complications cared for
(apnea, gastroesophagic reflux, cyanosis), mothers (apnea, gastroesophagic reflux, cyanosis), mothers
expressed concerns, insecurity and fear during interview. expressed concerns, insecurity and fear during interview.
Comments about the premature infant ranged from
These aspects emphasize the importance of providing
fearful aspects to excessive care, which may influence parents’ the information previously mentioned, as well as
ability to care for this child well or cause them to be afraid information about complications to caregivers of
or insecure to provide care. Feelings of apprehension, premature children, during their stay in the KMC program.
restlessness and fear are more evident in this care, as parents
As a result, the professional responsible for the act of
never prepare themselves to care for a premature child, caring must allow the needs felt by mothers to surface,
they do not expect their child to be born early(17-18).
rather than determining them. They must perform child
In terms of child hygiene (bath, diaper changing, body care actions with the mothers, instead of for the mothers,
cleaning), literature recommendations are practically giving them the opportunity to speak about their fears,
followed, except for the lateral rotation to handle the infant anxiety, and insecurity when caring for the child.
during its hygiene, as the position used is exclusively dorsal
It is believed that this is the first step for the premature
decubitus.
infant to be given care that is adequate for its needs. The
In caring for a premature newborn, apprehension next step consists in creating a nursing practice protocol
about complications arise, because they see it as a fragile for mothers and family members of premature children
and vulnerable being, more likely to become ill than a in the KMC program and in their homes, including a home
full-term child. By living with a premature child at home, visit and nurse availability to clarify questions both in the
families are found to be concerned not only about caring KMC program and at home.
for its vulnerable body, but also about the fear of the
Finally, it should also be emphasized the importance
child becoming ill or having serious complications. This of encouraging public authorities to implement the KMC
leads to such insecurity that it interferes with the habits program’s third stage – the follow-up outpatient clinic –
and routine of all family members(19).
to follow child growth and development, in accordance
Each family’s context, considering the difficulty of with the KMC program’s own recommendations.
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