http://doi.org/10.33698/NRF0152 Priyanka Sukrawal , Rupinder Kaur, K.Rao
Abstract : Congenital Esophageal atresia (EA) and tracheoesophageal fistula (TEF) are common
congenital anomalies, occurring in neonates. Cervical esophagostomy and gastrostomy is performed in
neonates with large gap in proximal and distal parts of esophagus or when it is not possible to perform primary
repair due to several other reasons. It is the nurse’s responsibility to assure the parents that they can provide
safe, competent care to their child with esophagostomy and gastrostomy tube feeding. An operational study
was conducted with the objective of developing skills of caregivers in providing home care to neonates with
gastrostomy tube feeding. Study samples were 30 caregivers of the neonates with gastrostomy tube feeding
who were operated for the first time after being diagnosed as having TEF and EA or large gap EA only by
purposive sampling method. Caregivers were given repeated teachings and demonstration of the procedure of
gastrostomy tube feeding and subsequently their skills were assessed using a check list. It is concluded from
the results of the study that with repeated teachings, demonstrations and reinforcement, the caregivers were
able to develop skills for giving care to their neonate with gastrostomy tube feeding (p<0.001). There was no
significance of age, sex or education of caregivers on development of skills in them (p>0.05), so the protocol
developed in the study can be applied to caregivers of neonates irrespective of their sex, age and education
level. From the present study it has been recommended that similar study can be conducted on larger number
of subjects and in different settings. Skills of the caregivers can also be assessed after discharge of the
neonate during the follow-ups if the time span of the study is longer. A separate multidisciplinary clinic should
be made for children with gastrostomy tube to deal with the problems faced by these children and their
caregivers. There should be a specialist nurse to develop knowledge and skills in caregivers of children with
gastrostomy tube.
Key words
Skills, Caregivers, Home care, NSICU,
Gastrostomy, Gastrostomy tube, Gastrostomy
tube feeding
Correspondance at
Rupinder Kaur
Clinical Instructor,
National Institute of Nursing Education,
PGIMER, Chandigarh
Introduction
Congenital Esophageal atresia (EA) and
tracheoesophageal fistula (TEF) are common
congenital anomalies, occurring in 18000
neonates per year in India.1 Tracheoe-
sophageal fistula is an abnormal connection
between the trachea and the esophagus.
Esophageal atresia is the absence, closure,
or constriction of the esophagus at any point
along its length.2 EA and TEF most frequently
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 82
occur together, with isolated TEF being much
less common and isolated esophageal atresia
being the least common condition.The
anomaly presents as five different types.3
TEF
and EA are also associated with other
malformations such as vertebral defects,
anorectal malformations, cardiac anomalies,
renal defects and radial bone dysplasia.4
Cervical esophagostomy and
gastrostomy is performed in neonates with
large gap in proximal and distal parts of
esophagus or when it is not possible to
perform primary repair due to several other
reasons. Through gastrostomy tube feeding
is given to the child until both ends of
esophagus are anastomosed. Neonates are
sent home with gastrostomy tube and the
caregivers are supposed to give feeding at
home through the tube. Prior to discharge it
is the nurse’s responsibility to assure the
parents can provide safe, competent care to
their child with esophagostomy and
gastrostomy tube feeding. Parents rely on
nurses to provide adequate training and
constructive feedback on technical skills
necessary for caring for their child at
home.Nurses also are in a position to assess
the family’s ability to express their current and
anticipated medical, social, emotional, and
financial needs.5
Still so far many studies have been
done to explore the epidemiology of
tracheoesophageal fistula (TEF) and
esophageal atresia (EA). Many researchers
have studied the complications after TEF
repair in various cases. Several complications
have also been repor ted because of
inappropriate knowledge and inadequate skills
of caregivers. Caregivers feel a lack of
knowledge regarding the care of their child
with gastrostomy tube.6
Some of the
researchers have mentioned that a well-
planned teaching protocol for caregivers is
required to reduce various morbidities in
children with gastrostomy tube feeding.7-9
Considering all these facts, it has been
concluded that a study was required to be
done to develop the skills of caregivers of
children with gastrostomy tube and also a
protocol needs to be developed for proper
education of caregivers
Objective of study
To develop skills of caregivers in
providing home care to neonates with
gastrostomy tube feeding in NSICU of PGIMER
Chandigarh.
Material and Methods
An operational study was conducted in
Neonatal Surgical Intensive Care Unit (NSICU)
of Advanced Pediatric Center (APC), Post
Graduate Institute of Medical Education and
Research(PGIMER), Chandigarh.Conceptual
framework was based on General Systems
Theory given by Ludwig Von Bertalanffy
(1969). Tools used in the study were Socio-
demographic Performa, and a checklist to
assess the skills of caregivers regarding the
care of neonate. A protocol was prepared to
teach the caregivers of neonates with
gastrostomy tube about gastrostomy tube
feeding at home. The tools and protocol were
prepared through relevant literature searched
on care of esophagostomy and gastrostomy
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 83
tube feeding (journals, web search and
books), consultation with the guide, co-guide,
physicians and nurses in NSICU and informal
discussion with the parents whose neonates
were under treatment in NSICU.
The tools and protocol were validated
by experts from faculty nursing and pediatric
surgery, PGIMER, Chandigarh for content,
language and validity of procedure and tools.
Inter-rater reliability was used to check the
reliability of tools.Observations of 4 subjects
were recorded by 2 observers simultaneously
on the same tools. Reliability was calculated
using Cohan’s Kappa. The tool was found to
be highly reliable (Cohan’s Kappa 0.857).
A written permission was taken from
the head of the department and the study was
approved by ethical committee. Written
informed consent was taken from the subjects
before including him/her for the study. 30 care
givers of neonates admitted in NSICU with
gastrostomy tube feeding wereselected as
study subjects according to the inclusion and
exclusion criteria through purposive
sampling.The criteria for selecting the study
samples was all the neonates who were
operated first time and were with gastrostomy
tube feeding. Data was collected in the months
of July-August 2011. Demographic proforma
of the patient was filled before starting the
procedure. Procedure of gastrostomy tube
feeding was demonstrated to the caregivers
as per protocol. They were asked to give
return demonstration of the procedure and
checklist was used to assess their skills. The
checklist consisted of 20 items. For each item
score 2 was given on correct performance
and one if not performed correct. Score
ranged from 20 to 40. The caregiver was
considered skillful proficient if total score in
any observation was 37 to 40. They were
asked to give return demonstrations again and
again so that they may become proficient in
providing care to their neonate with
gastrostomy tube feeding. Their skills were
assessed and a total of four observations were
recorded using the same checklist for each
subject. Analysis was done by using
descriptive and inferential statistics i.e.mean,
SD, percentage, one-way ANOVA, and
Scheffe’s post-hoc test.
Results
Socio-demographic data of parents is
depicted in table 1. It states that more than
half of the mothers (60%) had uneventful
pregnancy. 30% of mothers were graduate
whereas 26.7% of them were 10th
passed.Mean age of mothers was 24.97
(±2.671) years and range was 20-30 yrs. Of
them 26 (86.7%) were housewives whereas
4 (13.3%) were working. 36.7% of fathers
were graduate. Mean age of fathers was 27.6
(±2.594) years and range was 24-33yrs.
36.7% of fathers had business as their
occupation whereas 30% of them were doing
private jobs. Mean monthly income of the
family was Rs. 14400 (±10257) and range
was Rs. 4000/- to 41000/-.
Table 2 depicts that among the 30
neonates, 15 (50%) were term and 15 (50%)
were pre-term. Mean birth weight of neonates
was 2.56 (±0.455) kg. Weight of 40% of
neonates was in the range of 2.5-3kg.
Diagnosis of nearly half of the neonates
(56.7%) was TEF with EA followed by pure
esophageal atresia in 26.7% of neonates.
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 84
Socio-demographic variables n (%)
of parents
Gestational history of mother
Uneventful 18 (60.0)
Vomiting 2 (6.7)
Backache 3 (10.0)
Edema in feet 3(10.0)
Pregnancy induced hypertension 2 (6.7)
Polyhydramnios 2 (6.7)
Education of mother
Graduate 9 (30.0)
10+2 3 (10.)
10th 8 (26.7)
Middle 3 (10.0)
Primary 4 (13.3)
Illiterate 3(10.0)
Occupation of mother
Housewife 26 (86.7)
Working 4 (13.3)
Education of father
Postgraduate 4 (13.3)
Graduate 11 (36.7)
10+2 9 (30.0)
Middle 3 (10.0)
Primary 2 (6.7)
Illiterate 1 (3.3)
Occupation of father
Govt. job 4 (13.3)
Private job 9 (30.0)
Business 11 (36.7)
Labourer 3 (10.0)
Any other 3 (10.0)
Table 1: Socio-demographic profile of
parents N = 30
VARIABLE n (%)
Gestational age
Term 15 (50.0)
Pre-term 15 (50.0)
Birth weight (in kg)
1.5 – 2.0 5 (16.6)
2.0 – 2.5 8 (26.6)
2.5 – 3.0 12 (40.0)
3.0 – 3.5 5 (16.6)
Diagnosis of neonate
TEF and EA 17 (56.7)
Pure esophageal atresia 8 (26.7)
TEF and EA with ARM 4 (13.3)
TEF with cloaca 1 (3.3)
Surgery
Cervical esophagostomy & 26 (86.7)
gastrostomy
Cervical esophagostomy, 4 (13.3)
gastrostomy & colostomy
Birth weight (in kg) – Mean (±SD): 2.56 (±0.455)
Range — 1.76-3.258 kg
Table 3 reveals that the mean score of
caregivers in giving return demonstration in
the subsequent observations is increasing.
Also, the frequency and percentage of
caregivers becoming proficient in providing
care to the neonate with gastrostomy tube
feeding increased in subsequent
observations. Maximum caregivers (93.3%)
became proficient in third observation. Till the
fourth observation all the caregivers became
proficient. Test of one-way ANOVA is used
to calculate the mean difference of score of
subsequent observations and is found highly
significant at 0.05 level (p value < 0.05).
Age of mother (in years) – Mean (±SD): 24.97 (±2.671);
range 20-30 yrs.
Age of Father (in years) – Mean (±SD): 27.6 (2.594); range
24-33 yrs.
Monthly income – Mean (±SD): 14400 (±10257); range Rs.
4000-41000/-
Table 2: Profile of neonates N = 30
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 85
Table 3: Status of performance of caregivers in various return demonstrations of gastrostomy
tube feeding N = 30
Score Observation-1 Observation-2 Observation-3 Observation-4
Mean score of caregivers 27.8±2.369 35.2±2.214 38.7±1.363 39.7±0.479
Maximum Score = 40
Mean±SD
Range of score 23-33 29-39 35-40 39-40
No. of caregivers – 8 (26.6%) 28 (93.3%) 30 (100%)
who became
proficient (%)
df, F, P-value 119,287.8, 0.0001*
* The mean difference is significant at the 0.05 level
Table 4 shows the steps of procedures
performed by caregivers in observation-
1:Only few of the caregivers (6.7%) collected
all the needed articles required for providing
gastrostomy tube feeding to the neonate
before giving feed to the child; only 3.3%
caregivers learnt squeezing the drip chamber
of the feeding set until it is 1/3 full, using the
clamp to adjust formula flow rate and, closing
the clamp when the feed is finished. Although,
a good number of caregivers (73.3%) learnt
attaching the tip of the feeding set tube to
feeding tube, maximum of them (80%) filled
syringe with prescribed amount of warm water
whereas 66.7% of caregivers gently pushed
warm water through the feeding tube and took
feeding set off container after the feed is
finished.
Steps of procedure performed by
caregivers in observation-2 : All the
caregivers filled syringe with the set amount
of warm water, and hanged feed container on
pole. Almost all caregivers (96.7%) attached
feeding set to container, let the formula run
to the end of the feeding set tube to clear the
air out, attached the tip of the feeding set tube
to feeding tube and took giving set off
container after the feed is finished. Maximum
of caregivers (90%) gently pushed warm water
through the feeding tube and opened the flow
regulator clamp to allow the feed to run in by
gravity.
Steps of procedure performed by
caregivers in observation-3 : All the
caregivers filled syringe with the set amount
of warm water,gently pushed warm water
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 86
Item Observation-1 Observation-2 Observation-3 Observation-4
n(%) n(%) n(%) n(%)
Assesses the of
gastrostomy condition 7 (23.3) 17 (56.7) 29 (96.7) 30 (100)
Collects all needed articles 2 (6.7) 10 (33.3) 21 (70.0) 27 (90.0)
Washes hands with soap
and water 10 (33.3) 22 (73.3) 28 (93.3) 29 (96.7)
Fills syringe with the set
amount of warm water 17 (56.7) 30 (100) 30 (100) 30 (100)
Gently pushes warm water
through the feeding tube 9 (30.0) 27 (90.0) 30 (100) 30 (100)
Pours the set amount of
formula into the feed
container 10 (33.3) 19 (63.3) 26 (86.7) 30 (100)
Attaches giving set to
container 18 (60) 29 (96.7) 30 (100) 30 (100)
Hangs feed container on pole 16 (53.3) 30 (100) 30 (100) 30 (100)
Squeezes the drip chamber
of the giving set until
it is 1/3 full 1 (3.3) 13 (43.3) 29 (96.7) 30 (100)
Opens the flow regulator
clamp on the giving set 9 (30.0) 25 (83.3) 30 (100) 30 (100)
Lets the formula run to the
end of the giving set tube
to clear the air out 22 (73.3) 29 (96.7) 30 (100) 30 (100)
Closes the flow regulator 1 (3.3) 17 (56.7) 26 (86.7) 30 (100)
Clamps feeding tube to
prevent spillage 2 (6.7) 18 (60) 29 (96.7) 30 (100)
Attaches the tip of the
giving set tube to feeding tube 22 (73.3) 29 (96.7) 30 (100) 30 (100)
Opens the flow regulator
clamp to allow the feed to
run in by gravity. 18 (60.0) 27 (90.0) 30 (100) 30 (100)
Uses the clamp to adjust
formula flow rate 1 (3.3) 8 (26.7) 18 (60.0) 25 (83.3)
When finished the feed,
closes the clamp 1 (3.3) 14 (46.7) 23 (76.7) 29 (96.7)
Fills syringe with prescribed
amount of warm water 24 (80.0) 30 (100) 30 (100) 30 (100)
Gently pushes warm water
through the feeding tube 20 (66.7) 28 (93.3) 30 (100) 30 (100)
Takes giving set off container 20 (66.7) 29 (96.7) 30 (100) 30 (100)
Table 4: Steps of procedure by caregivers in various observations N=30
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 87
through the feeding tube, attached feeding set
to container, hanged feed container on pole,
opened the flow regulator clamp on the
feeding set,let the formula run to the end of
the feeding set tube to clear the air out,
attached the tip of the feeding set tube to
feeding tube, opened the flow regulator clamp
to allow the feed to run in by gravity,and took
feeding set off container after the feed is
finished.
Steps of procedure performed by
caregivers in observation-4: Almost all
caregivers (96.7%) washed their hands with
soap and water before starting the procedure
and closed the clamp when the feed was
finished. Maximum of them (90%) collected
all needed articles required for the procedure
whereas 83.3% of them used the clamp to
adjust formula flow rate. All the caregivers
were able to perform the rest of the steps in
fourth observation.
Table 5 : Scheffe post-hoc test has
been used to calculate multiple comparisons
among the means of various observations. It
reveals that there was significant difference
between the mean of observation-1 and the
means of observation-2, observation-3 and
observation-4 (p-value>0.05). Also, there
was significant difference between the mean
of observation-2 and the means of
obser vation-3 and observation-4 (p-
value>0.05). But there was no significant
difference between means of observation-3
and observation-4 (p-value<0.05).
Table 5: Multiple comparisons among means of various observations
Observations Mean Difference Standard error df, p-value 95% Confidence Interval
Lower Bound Upper Bound
Observation 1 and 2 -7.400 0.452 59, 0.000* -8.68 -6.12
Observation 1 and 3 -11.033 0.452 59, 0.000* -12.31 -9.75
Observation 1 and 4 -11.900 0.452 59, 0.000* -13.18 -10.62
Observation-2 and 3 -3.633 0.452 59, 0.000* -4.91 -2.35
Observation 2 and 4 -4.500 0.452 59, 0.000* -5.78 -3.22
Observation-3 and 4 -.867 0.452 59, 0.303 -2.15 .41
*The mean difference is significant at the 0.05 level
Mean scores of caregivers in various
observations were found to be not significant
in respect to age, sex and education of
caregivers (p-value>0.05) as calculated by
using the test of ANOVA.
Discussion
Cer vical esophagostomy and
gastrostomy is performed in neonates with
large gap in proximal and distal parts of
esophagus. Through gastrostomy tube,
feeding is given to the child until both ends of
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 88
esophagus are anastomosed. Prior to
discharge it is the nurse’s responsibility to
assure that the parents can provide safe,
competent care to their child with
esophagostomy and gastrostomy tube
feeding. Parents rely on nurses to provide
adequate training and constructive feedback
on technical skills necessary for caring for
their child at home5
But successful
management of EA with TEF is challenging
for nurses also.
Mothers’ experiences of feeding children
by a gastrostomy tube have been described
in various studies. Mothers gave detailed
accounts of their activities and the tremendous
stress involved in feeding the children. They
described spending enormous time and
energy seeking confirmation of the feeding
problem and devising extraordinary practices
to ensure the child’s survival before feeding
through gastrostomy tube. 6
Therefore
education of caregivers is essential to reduce
tube problems and complications in their
children. 7
However literature regarding
education related to the gastrostomy tube
feeding and care at home, varies, and is
confusing 9
. So a study was required to
develop the skills of caregivers of neonates
with gastrostomy tube feeding and a standard
protocol needed to be developed for education
of caregivers at home. Hence the present
study was conducted on the caregivers of the
neonates with gastrostomy tube feeding who
were operated for the first time after being
diagnosed as having TEF and EA or large gap
EA only. Purposive sampling was adopted for
this study and there were a total of 30
subjects.
As a Chinese proverb says “I hear I
forget, I see I remember, I do I know”, based
on this principle standardized protocol was
prepared and implemented to educate the
caregivers of neonates with gastrostomy tube
regarding the gastrostomy tube feeding at
home. Caregivers were given repeated
teachings and demonstration of the procedure
of gastrostomy tube feeding and were asked
to give return demonstrations. Subsequently
their skills were assessed in providing care to
their neonate with gastrostomy tube feeding
by using a check list. Four observations were
recorded for all the subjects. The results of
research were found to be in congruence with
the Chinese proverb.
The caregivers were able to learn some
items of procedure earlier than others probably
because they felt these items were more
important, easier to learn or needed. These
items were washing the hands with soap and
water, filling the syringe with set amount of
warm water, gently pushing the warm water
through feeding tube, and preventing the air
entry in gastrostomy tube. However, there
were some items of procedure that the
caregivers could not learn till the last planned
return demonstrations probably because
either was required in learning those items or
the caregivers felt that those items were not
important to learn. These items were
collecting all needed articles before giving
return demonstrations, using the clamp to
adjust flow rate of feed, and closing the clamp
when the feed is finished. Some of the
caregivers did not perform these items of the
procedure till the last planned return
Nursing and Midwifery Research Journal, Vol-9, No.2, April 2013 89
demonstration and required extra time and
additional return demonstrations to ensure
their learning.
It is concluded from the results of the
study that with repeated teachings,
demonstrations and reinforcement, the
caregivers were able to develop skills in giving
care to their neonate with gastrostomy tube
feeding. The age, sex or education of
caregivers had no impact on skill development
in them, so the protocol can be applied to
caregivers of neonates irrespective of their sex,
age and education level. Hence, it is
recommended that the caregivers of neonates
with gastrostomy tube feeding should be
made proficient in giving gastrostomy tube
feeding at home before the discharge of
neonate. Also, similar study can be conducted
on larger number of subjects and in different
settings. Skills of the caregivers can also be
assessed after discharge of the neonate
during the follow-ups if the time span of the
study is longer. A separate multidisciplinary
clinic should be made for children with
gastrostomy tube to deal with the problems
faced by these children and their caregivers.
There should be a specialist nurse to develop
knowledge and skills in caregivers of children
with gastrostomy tube.
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