Findings
about the knowledge and experiences of children and their parents participating
in the Second Prevention Programme of Rheumatic Fever
at the Vietnam National Heart Institute
Nguyen Dang Thang1*, Pham Thi
Hong Thi2 MD, PhD and Ann Bengtson3 RNT, PhD
1Doctoral Student, Faculty of Nursing and Midwifery, Hanoi Medical
University, Vietnam and Institution of Medicine, Department of Molecular and
Clinical Research, Sahlgrenska University Hospital,
Gothenburg, Sweden
2Vietnam National Heart Institute, Hanoi, Vietnam
3Associate Professor, Sahlgrenska Academy at
Gothenburg University, Institute of Health and Care Sciences, Gothenburg,
Sweden
*Corresponding Author Email: ann.bengtson@fhs.gu.se
ABSTRACT:
Background: Rheumatic Fever (RF) and Rheumatic Heart Disease are
still significant causes of cardiovascular diseases in the world today. The
most devastating effects are in children and young adults in their most
productive age. The children’s and their
parents’ role of participation is very important for maintaining implemented
prevention of RF.
Objectives: To describe
experiences and knowledge from RF in children and their parents while the
children are treated in The Second Prevention Programme (TSPP) of RF at the Vietnam National Heart
Institute.
Methods: Twenty children
(10-17 years), who were continuously treated in TSPP, and their parents, were
interviewed to express knowledge and experiences about RF. The children were
divided in two groups: Children Group 1 treated for less than five years and
Children Group 2 treated for more than five years. The parents of the children
were also invited to participate in the study in two Parent Groups. A quantitative
and qualitative method was used to the interviews.
Results: Only five children had knowledge of the immunization
mechanism in the pathogenesis of RF. None of the children or parents knew about
erythema marginatum,
subcutaneous nodules symptoms or C-reactive protein test. The parents and the
children, who were treated for less than five years, had less knowledge and
experiences of carditis , polyarthritis, arthralgia , throat culture for Streptococcus A, Anti-Streptolysin O test, electrocardiography. Most of the children and the parents used
direct consultation, medical books and television programs to search for
information regarding the disease.
Discussion: The children and their parents were missing a lot of
knowledge. The parents and their children, who were treated for less than five
years, had less knowledge and experiences about RF than the parents and their
children, who were treated for more than five years.
KEY WORDS: pediatric cardiology, rheumatic fever, secondary
prevention
INTRODUCTION:
Rheumatic Fever (RF) and Rheumatic Heart Disease (RHD)
are still significant causes of cardiovascular diseases in the world today. The
most devastating effects are in children and young adults in their most
productive age. The economic effects of these diseases are both individual
suffering and national suffering through higher direct and indirect health care
costs. In 2000, it was estimated that 12 millions of the worldwide population
suffered from RF.
The mortality rate per 100.000 inhabitants varied from
1.8, according to the World Health Organization (WHO) in the United States and
7.6 in South-East Asia. The Disability-Adjusted Life Years (DALY) by patients
in the RHD ranged from 27.4 DALY per 100.000 inhabitants in the United States,
to 173.4 per 100.000 inhabitants in South-East Asia. An estimated number of 6.6 million patients with RHD in
DALY’s are lost per year worldwide. [1] Data
from developing countries suggested that mortality due to RF is a huge problem.
Children and young adults still die from acute RF. The estimated prevalence of
RF and RHD occurred mainly among 6-15 years old children and varied
widely between countries by way of 0.2 per 100.000 school-age children in
Japan;
RF is a non-suppurative
complication of Streptococcal A pharyngitis due to a
delayed immune response. In the year 2002-2003, WHO defined the
symptoms and tests of RF based on the revised Jones criteria. Major
manifestations are carditis, polyarthritis,
chorea, erythema marginatum
and subcutaneous nodules. Minor manifestations are fever, arthralgia,
blood test elevated acute phase reactants supporting evidence of a preceding
Streptococcal A infection within the last 45 days, electrocardiogram with
prolonged P-R interval and recent scarlet fever.
TSPP of RF is defined as the
continuous administration of specific antibiotics to patients with a previous
attack of RF, or a well-documented RHD. [1, 2]
Knowledge means understanding
of or information about a subject which has been obtained by experience or by
study and which is either in a person’s mind or possessed by people generally.
Experience means the process of getting knowledge or skill which is obtained
from doing, seeing or feeling things. [3]
METHOD:
Aims: To
describe experiences and knowledge from RF in children and their parents while
the children are treated in TSPP of RF at the Vietnam National Heart Institute.
Methods: The study included two different methodological
designs. Each of them was reported separately in part 1 or part 2.
Sample: Twenty children, 10 to 17 years of age with RHD during
treatment in TSPP of RF at the Vietnam National Heart Institute, were divided
in two groups: Children Group 1 (CG1) had ten children treated for less than
five years and Children Group 2 (CG2) had ten children treated for more than
five years. The parents of the children were also invited to participate in the
study in Parent Group 1 (PG1) and Parent Group 2 (PG2).
All of the Vietnamese quotes
were translated into English independently twice.
Ethical implications: Participation
was voluntary after written and signed informed consent. Due the fact that
participants were under 18 years old, an agreement and a signature of their
parents was also required. All participants could leave this study whenever
they like to without facing any legal responsibility. All information about the
subjects is kept confidential. This study will be approved by the Local Ethics
Committee in Bachmai Hospital, Hanoi, Vietnam and
followed the Helsinki declaration.
RESULTS:
Demographic data
The children were aged from 10 to 17. All the
children had heart valve injury (Table 1). The prophylaxis time in the CG1
varied from one to four years, the average was three years. The prophylaxis
time in the CG2 varied from five to twelve years, the average was seven years.
Table 1. Demographic data of the children
(Percentage values are shown)
|
Socio - Demographic CG1 CG2 (n=10) (n=10) |
|
Age 10
– 14 years old 4 2 15
– 17 years old 6 8 Gender Male 5 5 Female 5 5 Education status Primary
school 2 0 Secondary
school 2 2 High
school 6 8 |
CG1: The children
treated for less than five years
CG2: The children
treated for more than five years
The parents were from 31-67 years old in the
PG1, and 37-53 years old in the PG2 (Table 2).
Table 2. Demographic data of the parents (percentage values are shown)
|
Socio - Demographic PG1
PG2 (n=10)
(n=10) |
|
Age < 50
years old 9 7 > 50
years old 1 3 Gender Male 2 1 Female 8 9 Education
status Secondary school 0 2 High school
4 4 College-Graduate 6 4 Marital status Married 10
10
|
PG1: The parents
having the children treated for less than five years
PG2: The parents
having the children treated for more than five years
Findings from the comparison of the groups
Seven children in the CG1, ten children in the
CG2, seven parents in the PG1 and nine parents in the PG2 knew about the cause
of RF being Streptococcal A. No significant differences were found between the
CG1 and the CG2 or between the PG1 and the PG2. Two children in the CG1 and
three children in the CG2 had knowledge of the immunization mechanism in the
pathogenesis of RF. But none of the parents had this knowledge. The CG1 had
less knowledge of carditis, polyarthritis
and throat culture for Streptococcal A test than the
CG2. The CG1 had fewer experiences of arthralgia,
Anti-Streptolysin O (ASLO) and throat culture for
Streptococcal A test than the CG2. Significant
differences were found between the CG1 and the CG2 (Table 3).
The PG1 had less knowledge about carditis and about the ASLO test than the PG2 (p=0.04).
Five parents in the PG1 had experience from their children’s
electrocardiography and ten parents in the PG2 (p=0.03) (Table 4).
Eight children in the CG1 and nine children in
the CG2 thought that they needed an early prevention in RF after receiving the
diagnosis. Four children in the CG1 and nine children in the CG2 had knowledge
about the prophylaxis of RF (p=0.03). Knowledge in Oral treatment with Penicilline V was less in CG1 than CG2 (p=0.04). All
parents in the PG1 and all parents in the PG2 thought that their child needed
an early prevention in RF after receiving the diagnosis.
The PG1 had less knowledge and experience of
medication in the prophylaxis of RF than PG2. All children in the CG1, nine
children in the CG2, seven parents in the PG1 and all parents in the PG2 used a
direct consultation. Seven children in the CG1,
nine children in the CG2, seven parents in the PG1 and all parents in the PG2
read medical books. Six children in the CG1,
seven children in the CG2, six parents in the PG1 and eight parents in the PG2
used a television programme to search information
about the disease.
Four themes were found: Cause and Pathogenesis
of RF; Symptoms and tests of RF; Second Prevention of RF; The ways currently used and
required ways to receive information about the disease.
Table 3. Knowledge and experiences of the
children about the symptoms and test of Rheumatic Fever (RF) (Percentage values
are shown)
|
The
symptoms and test of RF Knowledge Experience
CG1 CG2 p* CG1 CG2 p* (n=10) (n=10) (n=10)
(n=10) |
|
Clinical
symptoms of RF Carditis
2 8 0.01 3 6 Polyarthritis 4 9 0.03 3 3
Chorea
1 0 0 0 Erythema marginatum 0 0
0 0
Subcutaneous nodules 0 0 0 0
Fever
2 4 1 5 Arthralgia
4 7 6 10 0.04 Other
symptoms
7 8 7 8 Laboratory
tests of RF
Erythrocyte Sedimentation Rate 0 0 1
0
C-Reactive Protein 0 0 0 0 Anti-Streptolyxin O 5 9 4
9 0.03 Throat
culture for Strep A
1 6 0.03 0 4 0.04
Radiography
5 8 6 6
Electrocardiography 4 8 5 7 Doppler
ultrasound
8 10 10 10 Other
test 7 4 6 5 |
*Fisher’s exact test
CG1: The children treated for less than five
years
CG2: The children treated for more than five
years
Table 4. Knowledge and
experiences of the parents about the symptoms and test of Rheumatic Fever (RF)
(Percentage values are shown)
|
The
symptoms and test of RF Knowledge Experience
CG1 CG2 p* CG1 CG2 p*
(n=10) (n=10) (n=10) (n=10) |
|
Clinical
symptoms of RF Carditis
2 7 0.04 2 5 Polyarthritis 2 5 4 6
Chorea
1 0 0 0 Erythema marginatum 0 0 0 0
Subcutaneous nodules 0 0 0 0
Fever
1 2 5 7 Arthralgia
2 4 4 7 Other
symptoms
7 8 7 8 Laboratory
tests of RF
Erythrocyte Sedimentation Rate 1 0 2 0
C-Reactive Protein 0 0 0 0 Anti-Streptolyxin O 3 8 0.04 3 6 Throat
culture for Strep A 5 6 2 4
Radiography
5 7 6 6
Electrocardiography 5 9 5 10 0.03 Doppler
ultrasound
6 9 8 10 Other
test
5 4 8 6 |
* Fisher’s exact test
PG1: The parents having the children treated
for less than five years
PG2: The parents having the children treated
for more than five years
Theme 1. Cause and pathogenesis of Rheumatic Fever
The majority of the children and the parents
knew that bacteria were the main cause of RF. These bacteria were Streptococcal
A. They explained that Streptococcal A could damage heart valves, joints or
kidneys after the child having pharyngitis. Most of
the children and the parents explained that bacteria or a virus could pass
through blood vessels when pharyngitis was
established. These could directly injure organs of the body “...the cause of disease is Streptococcal pharyngitis...after that, it travels to joints to cause
swelling...follows the blood stream, bacteria run into the heart to damage
heart valves...”. Some parents believed that RF was hereditary and could be
transmitted from mother to child “...or
rheumatic heart disease is passed on from me because I also have rheumatism”.
Theme 2. Symptoms and tests of Rheumatic Fever
The symptoms of carditis
were expressed by the children and the parents as chest pain, rapid heart rate,
weakness, pale skin, blue lips and rapid breathing and that the child felt more
tiredness after rapid exercising. Most of the children had polyarthritis
symptoms. The manifestation of polyarthritis included
redness, swelling and pain in the joints moving from one joint to another and
occurred simple or complex with other symptoms “In my case, I usually have a cough and fever, then swollen joints”.
After one or two weeks without treatment, the polyarthritis
symptoms disappeared. Other symptoms were expressed by the children and the
parents such as arthritis, fever, sore-throat, chorea and unconsciousness.
Occasionally the parents described the blood test including Erythrocyte
Sedimentation Rate and ASLO. They believed that the blood tests should help the
physician to find bacteria in the blood “Blood
test determines whether or not there is Streptococcus causing rheumatic heart
disease in blood...”. Another test expressed by
the children and the parents was the urine test. Why did the physician do a
urine test? What information about RF did the results of the urine test give?
They did not understand.
Theme 3. Second
prevention of Rheumatic Fever
Most of the children and the parents believed
that they had prophylaxis soon after they received a diagnosis of RF to avoid
complications “... The earlier
prophylaxis begins the better, because by implementing prophylaxis soon, we can
treat disease and avoid complication”. The majority of the children and the
parents thought that if the children had a less severe sort of RF, they might
prevent RF subsequently from five or until 18 or until 25 years of age. If
children had a more severe RF, they might prevent RF as long as possible or for
the rest of their life “For light
Rheumatic Fever a patient should be injected for least five years or until they
are 18 or 25 years of age. The more serious cases should be injected for the
rest of their lives”. But they did not know what symptoms were expressed in
the less severe sort of RF or severe RF. Some
of the parents complained that the physicians and nurses did not help them
understand the medication used in the prophylaxis of RF. They explained “I don’t know the name of the
drug...smiling... the nurses discarded its cover after injecting...”.
Theme 4. The ways was currently used and required ways to
receive information about the disease
Most of the children and parents consulted
physicians or nurses while they had cared for their children in the prophylaxis
of RF at the hospital. The physician’s consultation was not informative enough
because they lacked time and they had no private room. “...sometime, I had questions but the physician didn’t have enough time
to answer...”. Therefore,
most of the children and the parents expected direct consultation or
consultation in small groups “I wish that
the physicians directly explained in order for me to understand clearly about
my child’s disease”. The children and the parents received the information
about the disease from the books or guide documents in the hospital “I know this information through books given
by physicians...”. The children and the parents
also required the hospital to have a Website with information about the disease
“If there is a Website from a
cardiovascular hospital, it would be extremely helpful for patients and their
relatives”. Many parents wished that the hospital had a telephone hotline
advice services.
DISCUSSION:
In the study, no significant differences in
the distributions of age, gender, and educational status were found between the
CG1 and the CG2 or between the PG1 and the PG2. The mean secondary prophylaxis
time in the CG1 was three years and in the CG2 it was seven years.
The cause and pathogenesis of Rheumatic Fever
Seven children in the CG1, ten children in the
CG2, seven parents in the PG1 and nine parents in the PG2 believed that the
cause of RF was Streptococcal A. The cause of RF being the Streptococcus A was
demonstrated by other studies. [5] The pathogenesis of RF was related to
autoimmunity and cellular responses against human tissues triggered by
Streptococcus Pyogenes. [6] In this study, two
children in the CG1 and three children in the CG2 had knowledge of immunization
in the pathogenesis of RF. None of the parents in the PG1 or the PG2 had
knowledge of this pathogenesis of RF. But more than half of them (25 of 40)
believed that the bacteria lead to RF. Perhaps, the parents misunderstood the
pathogenesis of RF and deduced this from the condition of their child. No
significant differences in the knowledge about the cause and the pathogenesis
of RF were found between the CG1 and the CG2 or between the PG1 and the PG2.
These results proved that almost all the children and their parents lacked
knowledge of the pathogenesis of RF.
The symptoms and tests of Rheumatic Fever
The carditis
symptoms including chest pain, rapid heart rate, rapid breathing, pale skin and
blue lips usually occurred in the patients having RF or heart failure. [6]
Thirty eight percent of the children, who had received regular antistreptococcal prophylaxis after their first attack, had
RHD after five years [7] and forty eight percent of the children, who had RHD
presented with heart failure, had deteriorated after four years. [8] Fewer
children in the CG1 had knowledge of carditis than
those in the CG2. Significantly, fewer children in the CG1 knew about polyarthritis symptoms. The children could describe the
characteristics of polyarthritic symptoms including redness, swelling and pain in joints moving
from one joint to another and occurring simple or complex with other symptoms.
After one or two weeks without treatment, these symptoms should disappear.
These characteristics of polyarthritic symptoms have
earlier been described by Jones. [9] None of the children or the parents had
been aware of, or had experienced erythema marginatum and subcutaneous nodules. These symptoms rarely
occurred in the patients having RF. [10] Fewer children in the CG1 had
experienced arthralgia symptoms than children in the
CG2. Arthritis was a symptom of RF [9] and usually occurred in the patients
having RF. The arthritis was the reason for the parents taking their child to
be examined at the clinic. The radiography, electrocardiography and Doppler
ultrasound were the tests used. In this study, a high percentage of the
children and the parents knew about radiography, electrocardiography and
Doppler ultrasound. They understood that
these tests helped the physician to diagnose and help them to understand the
child’s disease. The ASLO and throat culture for Streptococcal A tests were regular laboratory tests. [11] In this study,
the CG1 had less knowledge and experience of
throat culture for Streptococcal A test and ASLO test
than the CG2. The PG1 had less knowledge of ASLO test and experience of
electrocardiography than the PG2.
The second prevention of Rheumatic Fever
Most of the children and the parents knew that
they needed to prevent RF soon after they had been diagnosed. This was in
agreement with other studies. [12, 13] In this study; fewer children in the CG1
had knowledge of prophylaxis of RF than CG2. Most of the children and the
parents had knowledge and experiences of the Injection treatment from TSPP of
RF. No significant differences were found between the CG1 and the CG2 or
between the PG1 and the PG2. This was in agreement with other studies. [7, 12,
14] Fewer children in the CG1 had experience from Oral treatment in the
secondary prophylaxis than the CG2. Oral treatment was chosen by the children
when they began to participate in TSPP of RF or when they missed their
injection. They could take the treatment in their homes. [14] Fewer children in
the CG1 had knowledge of the Penicillin V than the CG2. Most of the children
and the parents had experience of the Benzathine
penicillin, but they did not know the dose of Benzathine
penicillin. [14, 15]
The ways currently used and required ways to receive
information about the disease
The primary source of information about the
disease was obtained from direct consultation followed by information from
books and lastly from television programmes. These
findings were in agreement with other studies. [14, 16] Most of the children
and the parents wanted to maintain direct consultation with the medical staff
in the hospital. Three children in the CG2 and four parents in the PG2 required
the meetings with medical staff in a small group. Two children in the CG2 and
seven parents in the PG2 expected a telephone advice services in the hospital.
The findings from this study were in agreement with other studies. [7, 17]
LIMITATION:
The sample in the study was small resulting in
a very low power to detect potential differences.
CONCLUSION:
The parents and their children, who were
treated for less than five years, had less
knowledge and experiences about RF disease than the parents and their children,
who were treated for more than five years.
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Received on 19.01.2012 Modified
on 28.02.2012
Accepted
on 05.03.2012 ©
A&V Publication all right reserved
Asian J. Nur. Edu. & Research 2(1): Jan.-March 2012; Page 06-11