RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES_ - DOC - DOC by cuiliqing

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									 RAJIV GANDHI UNIVERSITY OF HEALTH SCIENCES,
           KARNATAKA, BANGALORE.


 PROFORMA FOR REGISTRATION OF SUBJECT FOR
              DISSERTATION

1.   NAME OF THE          NONGTHONGBAM BABITA
     CANDIDATE AND        1ST YEAR M.SC. NURSING
     ADDRESS              THE OXFORD COLLEGE OF
     (IN BLOCK LETTERS)   NURSING
                          I PHASE, J.P.NAGAR
                          BANGALORE-560078


2.   NAME OF              THE OXFORD COLLEGE OF
     INSTITUTION          NURSING
                          I PHASE, J.P.NAGAR
                          BANGALORE-560078


3.   COURSE OF STUDY &    MASTER DEGREE IN NURSING
     SUBJECT              PAEDIATRIC NURSING


4.   DATE OF ADMISSION    23/05/07
     TO COURSE


5.   TITLE OF THE TOPIC   KNOWLEDGE OF PARENTS
                          REGARDING CARE OF
                          CHILDREN WITH CONGENITAL
                          HEART DISEASE.




                           1
6. BRIEF RESUME OF THE INTENDED WORK

INTRODUCTION
             “With the birth of every child, man may calculate that

             God is still hopeful about the World He created”

                                                    William Wordsworth

      Children represent the future, and ensuring their healthy growth and

development ought to be a prime concern of all societies. But healthy

survival of a child is threatened at every moment because he is vulnerable to

various health problems.

      Child health problems are alarming throughout the world, especially

in the developing countries. One of the major health problems among

children is congenital heart disease.

      A healthy heart is vital for living life to the full, regardless of age &

gender. According to WHO documents, congenital heart disease is termed as

Congenital anomaly which includes all biochemical, structural and

functional defects at birth.

      The Congenital heart disease (CHD) is one of the most common birth

defects accounting for 30% of total congenital malformation. The heart is

developed during the period of embryogenesis from the primitive muscle

wrapped to a four chambered muscular organ with septa, valves, conduction


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system and major vessels originating & terminating in the heart. Any defect

in the orderly and sequential development leads to structural or functional

malformation.1

      During intrauterine life, 10% of the cardiac output passes through the

lungs. The remaining 90% is shunted via the patent ductus arteriosus to the

aorta and systemic circulation. After birth, most of the right ventricular

output should pass through the lungs to facilitate proper gas exchange. In

order to make this possible, the ductus undergo constriction and functional

closure soon after birth in term neonates. 80% of the ductus arteriosus in

term infants closes in 48 hrs and nearly 100% by 96 hrs. Failure of this

normal closure results in problems especially in pre-term neonates.2

      Exact cause of CHD is not known but many factors are associated

with CHD such as parental viral infection, poor maternal nutritional status,

the mother‟s age above 40 years and mother has insulin dependant diabetes

& use of drugs such as lithium, anticonvulsants, etc. Congenital heart

diseases are mainly grouped as Acyanotic and Cyanotic. Acyanotic heart

disease includes coarctation of aorta (COA), ventricular septal defect (VSD),

pulmonary stenosis (PS), patent ductus arteriosus (PDA), arterial septal

defect (ASD) and aortic stenosis (AS). Cyanotic heart disease includes

Tetralogy of Fallot (TOF), transposition of the great vessels (TGV).3



                                      3
        Until 1930, Rheumatic heart disease was believed to be the most

common form of heart disease in children. But within recent years,

congenital heart disease, topped the chart of the statistics on most cardiac

centres and proved to be more common of the two. Many cases of congenital

heart disease die during infancy and in some children, the disease does not

manifests in the first few years of life, emphasizing the need to establish the

prevalence of this disease.4

        Treatment of the defect can include medicine, surgery and heart

transplant. Today many children born with complex heart defects grow to

adulthood and lead a productive life. When parent learns that their child has

a cardiac defect, the nurse can assist parent‟s knowledge, responsibility and

help them to learn care of their child both at home and in hospital.5

6.1     NEED FOR THE STUDY
      Congenital heart disease occurs in approximately 1 out of every 100 live

births. One third of infants born with CHD develop life threatening

symptoms within the first few days of life. Infant mortality rate in these

cases are as high as 90%. Boys tend to have a higher incidence of CHD than

the girls.




                                       4
      In India nearly 1,80,000 children are born with CHD each year and of

these, nearly 60,000 to 90,000 suffer from CHD requiring early

intervention.6

      The prevalence of CHD for 5 years (2000 to 2004) in Mysore Hospital

ranges from 6.6 to 13.06 per 1000 live births. The most frequent type of

CHD was found to be VSD (40.47%) followed by ASD (19.06%), TOF

(13.38%) and PDA (9.53%).7

      The birth of a child with a cardiac defect is of alarming concern to

parents. Unless parents have a proper understanding and knowledge about

care, they will not be able to perceive the needs of their children. However

in real practice, after learning about their child‟s illness, the parents may

goes into a state of shock, denial, guilt, anger, despair and confusion. Due to

lack of comprehensive knowledge about the disease, the parent fails to

provide proper care and guidance to the child. The parents need to

understand the effects and home care of CHD especially importance of

feeding, burping, limitation of activities, care during the cyanotic spell,

measures to relieve the child‟s anxiety and importance of warmth, rest and

sleep. Also the parents should know about the various advancements in

medication and surgical technology namely septosomy, intervention for right




                                      5
sided obstruction, intervention for left sided obstruction and closure of

cardiac defects emborotherapy for the correction of CHD.8

      Investigators in a tertiary care outpatient pediatric cardiac center in

Hong Kong recruited the parents of 156 children with congenital heart

disease (CHD) to test them in 3 domains of knowledge of CHD specific to

their child: 1) nature of the disease and its treatment; 2) impact of CHD on

exercise capacity; and 3) infective endocarditis and its prevention. Eighty-

two percent of the participating parents had completed high school. Parental

occupations were representative of a spectrum including professionals,

administrators and managers, skilled and unskilled workers, and the

unemployed. It was found that 59% of parents correctly named their child‟s

congenital heart disease; only 28.8% correctly indicated the heart lesion(s)

diagrammatically. 80% of parents were aware of the indications and aims of

previous surgical and transcatheter interventions. About half of the parents

were aware of possible etiologies and of the hereditary nature and symptoms

attributable to underlying heart disease. Disappointingly, of the 56 parents

whose children were taking cardiac medications, only 25 (44.6%) and 4

(7.1%) knew correctly the functions and important side effects of the

medications, respectively. With regard to exercise capacity, 59% of parents

indicated its level appropriate for the heart lesion. While 26.9% of parents



                                     6
had heard of the term “infective endocarditis”, slightly more than half of the

parents were aware of the need for antibiotics before dental procedures.

Parents of children with congenital heart disease have important knowledge

gaps. The findings suggest that the current educational programme is

inadequate and needs to be refined to promote better parental understanding

of their child‟s heart disease, with the ultimate aim of enabling parents to

impart such knowledge accurately to their children.9

        Parents with limited knowledge of care will lead to anxiety, fear and

loss of confidence. Unless they receive an appropriate knowledge, the entire

family will live in a state of chronic anxiety and it will further result in poor

social and physical development of the child. Parents are direct care giver

for their children, therefore they should be given proper guidance in regard

to the care of CHD so that they could provide and promote optimal health to

their child.

        Since the awareness of CHD is poor in parents, this created an interest

in the investigator to take up this study, to assess level of knowledge among

parents of children with CHD and to upgrade knowledge level by developing

an information booklet which will have a positive influence on quality of

care.




                                       7
6.2 REVIEW OF LITERATURE
   6.2.1. STUDIES RELATED TO GENERAL INFORMATION TO
          CHD.

   6.2.2. STUDIES RELATED TO KNOWLEDGE OF PARENTS ON
           CARE OF CHILDREN WITH CHD.


6.2.1 STUDIES RELATED TO GENERAL INFORMATION TO CHD.

      S.L.Chadha et al conducted a community based survey of CHD on a

random sample of 11833 children below 15 years in Delhi, India. CHD was

diagnosed on clinical examination. Out of the examined sample, 50 were

found suffering from CHD giving an overall prevalence of 4.2/1000

(4.6/1000 in boys & 3.7/1000 in girls). The prevalence rate was slightly

higher than other studies carried out in the country. The study was

community based while other studies were hospital or school based. The

lesions in order of pregnancy were VSD (46%), ASD (18%), PDA (14%),

TOF (10%), AS (4%) and PS (4%). Like other studies, VSD was the

commonest lesion. The prevalence rate was higher in age group 0-4 years &

5-9 years in boys whereas it was higher in adolescent age group.4

      Julien I.E. Hoffman et al conducted a study designed to determine the

reason for the variability of the incidence of CHD, estimate its true value

and provide data about the incidence of specific major forms of CHD. The

incidences reported in 62 studies published after 1955 were examined. The


                                     8
incidence of CHD in different studies varies from 4/1000 to 50/1000 live

birth. It was found that the incidence of severe CHD that will require expert

cardiologic care is quite stable at about 2.5 to 3/1,000 live births. The

moderately severe forms of CHD probably account for another 3 per 1,000

live births, although another 13/1,000 live births have Bicuspid aortic valves

that will also eventually need cardiologic care. The majority of minor forms

of CHD do not need specialized cardiologic care, and indeed many of these,

such as the tiny VSD or ASD and the small PDA, may either close

spontaneously or never cause medical problems. It was concluded that the

variations in the reported incidence of CHD are primarily due to variations

in the ability to detect trivial lesions, notably small muscular VSDs that

usually close in infancy.10

      Vijaylakshmi Suresh et al conducted a study on „Frequency of various

CHD‟. To support this 6985 patient who had undergone haemodynamic and

angiographic studies in Sri Jayadeva Institute of Cardiology, Bangalore. The

duration of the study was 14 years (April 1981 to April 1994). The result

revealed that out of 6985 patients, 3790 (54.3%) had CHD. 2386 (63%) of

these cases had ASD, VSD and PDA. Among them 367 (15%) had

pulmonary arterial hypertension of various grades.11




                                      9
      The Tennessee Task force reviewed the central medical literature on

the topic of Screening Newborn Infants for Critical Congenital Heart

Defects by undergoing pulse oximetry screening, as well as data obtained

from Tennessee department of health. The finding showed estimated

incidence of CHD is 170 in 100000 live births and of those, 60 in 1,00,000

infants have ductal dependent left sided obstructive lesion with potential of

presenting by shock or dead if the diagnosis is missed. The diagnosis is

missed in 9 in 1,00,000 by fetal ultrasound assessment and discharge

examination which can be identified by a screening program. Identification

of the missed diagnosis in these infants before discharge could prevent death

or neurologic sequelae.12

      Femi Olufemi Jaiyesimi et al conducted a study for a period of 39

months (August 1988 to October 1991) to detect the association of

noncardiac defects (NCD) with CHD. The study comprises of 320 CHD

patients from the Pediatric Cardiology Unit at King Fahd Specialist Hospital,

Buraydah, Qassim Province. 90 NCD were detected in 80 (25%) of the 320

patients. The results of the study confirmed that there is a relatively high

incidence of NCD in children with CHD.13




                                     10
6.2.2 STUDIES RELATED TO KNOWLEDGE OF PARENTS ON
      CARE OF CHILDREN WITH CHD.

      Maurit Beeri et al conducted a study on mothers of children with

CHD. The study group comprised 74 children aged 2 weeks to 19 years

(mean age 49.8+7.27 months) chosen randomly from those who visited the

pediatric cardiology outpatient clinic at Hadassah University Hospital

between September 1996 and November 1997. Eighteen percent of the

parents failed to describe their child's malformation correctly. The study

found that parental understanding of the heart defect correlated with parental

education. Future prenatal diagnosis was considered by 88% of families, and

termination of pregnancy by 40%. Only 40% of children were aware of their

heart problem. Children of parents who were ignorant about the condition

tended to lack knowledge themselves. 68% of Jewish families turn to non-

medical personnel for medical advice.14

      Abdullah et al conducted a study on parents of 205 patients attending

the paediatric cardiology clinic at King Khalid University Hospital, Riyadh

from June 1999 to June 2000. The parents were interviewed using standard

questionnaire pertaining to their knowledge about child cardiac disease,

medication & bacterial endocardial prophylaxis (BEP). The patient mean

age was 5 years & 8 months with a range of 1 month to 15 years. The result

of the study revealed that 201 (98%) parents knew the correct name of their

                                     11
child cardiac condition, and 48 out of 50 (92%) knew the names of their

child‟s current medication. 113 out of 176 (64%) parents with at risk

children were aware of measures to prevent endocarditis. It was concluded

that though the parents knew the names & current medication of their child

heart lesions the knowledge of endocarditis and BEP was limited. Therefore

an intensified education and awareness programme are needed in order to

prevent potential major morbidity & mortality for paediatric patient with

CHD.15




STATEMENT OF PROBLEM

A study to assess the level of knowledge of parents regarding care of

children with CHD in selected hospital, Bangalore with a view to prepare an

information booklet.

6.3 OBJECTIVES OF THE STUDY
   6.3.1 To assess the knowledge of parents regarding, the care of children

         with CHD.

   6.3.2 To determine, the association between knowledge of parents with

         selected variables.

   6.3.3 To develop an information booklet based on learning needs of

         parents on care of children with CHD.


                                    12
6.4 HYPOTHESIS
    H0: There will not be any significant association between knowledge of

   parents regarding care of CHD with selected demographic variables.

   VARIABLES

   Independent Variables:       Demographic variables such as age, sex,
                                education, income, types of family, place of
                                living.
   Dependent Variables:         Knowledge of parents regarding care of
                                children with CHD.


6.5 OPERATIONAL DEFINITIONS
Knowledge: It refers to the correct response from the parents on care of

children with CHD elicited through structured interview schedule.

Congenital Heart Disease: It is defined as a structural, functional or

positional defect of a heart in isolation or in combination, present at birth,

such as newborn presented with heart defects.

Children: It refers to an individual between the age group of 0 to 14 years.

Parents: It refers to mother or father in-charge of caring for children with

CHD.

Care: It refers to all the activities done by parents before, during and after

the treatment of their child with CHD at hospital and homes.




                                     13
Information Booklet: A material containing information on care of children

with CHD which consist of the following aspects. Acyanotic heart disease -

arterial septal defect (ASD), ventricular septal defect (VSD), patent ductus

arteriosus (PDA), coarctation of aorta (COA), , pulmonary stenosis (PS), ,

and aortic stenosis (AS). Cyanotic heart disease - Tetralogy of Fallot (TOF),

transposition of the great vessels (TGV).

6.6 ASSUMPTIONS
      6.6.1 Parents may have some knowledge on care of children with CHD.
      6.6.2 Parents may have interest to know more about care of children
           with CHD.
6.7 DELIMITATIONS
   6.7.1 The Study is limited to parents who are caring for the children with
           CHD in selected cardiac hospitals, Bangalore.


7. MATERIAL AND METHODS:

7.1     SOURCE OF DATA:
      Data will be collected from parents whose children are admitted at

      selected cardiology hospital in Bangalore.

7.2 METHOD OF COLLECTION OF DATA:-
      - Structured interview schedule.




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7.2.1 RESEARCH APPROACH

     Survey approach.

7.2.2 RESEARCH DESIGN

    Descriptive survey design.

7.2.3 RESEARCH SETTING

   Study will be conducted in selected hospitals of Bangalore.

7.2.4 POPULATION

   Population of the study comprises of parents whose children with

   CHD are admitted at selected hospital in Bangalore.

7.2.5 SAMPLE SIZE

   50 Parents

7.2.6 SAMPLING TECHNIQUE

   Purposive sampling technique.

7.2.7 SAMPLING CRITERIA

   Inclusion Criteria-

   1. Parents who are willing to participate in the study.

   2. Parents available during data collection.

   Exclusion Criteria-

   1. Parents who are not available during the study.

   2. Parents who are not willing to participate in the study.



                                  15
 7.2.8 DATA COLLECTION TOOL.

    Data collection tool is structured interview schedule which consist of

    Part I

    - Items related to the selected demographic variables of parents such

    as age, sex, education, income, type of family and place of living.

    Part II

    - Items related to knowledge assessment of parents regarding care of

    children with CHD.

 7.2.9 DATA ANALYSIS METHOD

    Data analysis will be through descriptive and inferential statistics.

    Descriptive statistics:- mean, median, mode & standard deviation.

    Inferential statistics:- Chi Square

7.3 DOES THE STUDY REQUIRE ANY INVESTIGATION

  OR     INTERVENTION               TO    BE      CONDUCTED               ON

  PATIENTS OR OTHER HUMAN OR ANIMALS?

  Yes – study will be conducted on parents knowledge regarding care of

  children with    CHD.




                                    16
7.4 HAS ETHICAL CLEARANCE BEEN OBTAINED FROM

YOUR INSTITUTION?

 1. Ethical clearance will be obtained from the ethical committee of Oxford

    College of Nursing.

 2. Permission will be obtained from concerned authority of the selected
    hospitals in Bangalore.
 3. Informed consent will be obtained from the subjects who are willing to
   participate in the study.




                                   17
8. LIST OF REFERENCES:

1. Parthasorathy A, Nair M.K.C, Menon P.S.N. IAP Textbook of

   Paediatrics Nursing. 3rd ed. New Delhi: Jaypee Publishers; 2006.

2. Aggarwal Rajiv, Bajpai Anurag, Deorari K. Ashok, Paul K. Vinod.

   Patent Ductus Arteriosus in Preterm Neonates. IJP 2001; 68: 981.

3. Tambulwalkar R.S.Paediatric Nursing. 2nd ed. Mumbai: Vora Medical

   Publication; 2001

4. Chadha S.L, Singh Neerpal, Shukla D.K. Epidemiology Study of

   Congenital Heart Disease. Indian Journal of Paediatrics 2001; 68 (6):

   507

5. Marlow Dorothy R, Redding A. Barbara, Text Book of Paediatric

   Nursing, 6th ed. Philadelphia, W.B.Saunders; 1988

6. Saxena Anita, Congenital Heart Disease in India: A Status Report,

   Indian journal of Paediatrics, 2005; 72 (7): 595.

7. Smitha R, Karat S. C, Narayanappa D, Krishnamurthy B, Prasanth S.

   N, Ramachandra N. B. Prevalence of Congenital Heart Disease in

   Mysore, Indian journal of Human Genetics, 2006 Jan-April; 12(1): 11

8. Kulkarni M.L, Paediatric Cardiology, Jaypee Brothers, 2nd ed. 2003




                                  18
9. Cheuk D. K. L, Wong S. M. Y, Choi Y. P, Chau A. K. T, and Cheung

  Y. F. Parents‟ understanding of their child‟s congenital heart disease.

  Heart. 2004 April; 90(4): 435–439

10.Hoffman I.E Julien, Kaplan Sameul. Incidence of Congenital Heart

  Disease. Journal of American College of Cardiology. 2002; 39 (12):

  1890.

11.Suresh Vijayalakshmi, Rao AS Chandrasekhara, Yavagal ST.

  Frequency of various Congenital Heart Diseases: Analysis of 3790

  consecutively catherised patients. IJH 1995 March-April; 47: 125-

  128.

12.Liske R. Micheal, Greeley Christopher S, Law David J, Reich

  Jonathan D, Morrow William R, Baldwin H. Scott, et al. Report of

  Tennessee Task Force on screening new born infants for critical

  congenital heart disease, American Academy of Paediatrics 2006; Oct,

  118 (4): e1250. Available from: URL:

  http://pediatrics.aappublications.org/cgi/reprint/118/4/e1250

13.Jaiyesimi Femi Olufemi, Ruberu Dawala K. Noncardiac Defect in

  children with congenital heart disease. Department of Pediatric

  Cardiology and Pediatrics. King Fahd Specialist Hospital, Buraydah.

  1994 May. Available from: URL:



                                 19
  http://www.kfshrc.edu.sa/annals/143/93010.html

14.Beeri Maurit, Ziv Haramati, JJT Azaria Rein, Amiram Nir. Parental

  Knowledge and view of paediatric congenital heart disease. IMAJ

  2001; 3: 194. Available from: URL:

  http://www.ima.org.il/imaj/ar01mar-9.pdf

15.Al-Jarallah Abdullah S, Lardhi Amer A, Hassan Amina A.

  Endocarditis prophylaxis in Children with Congenital Heart Disease:

  Parent‟s awareness. Saudi Medical Journal 2004; 25 (2): 182-185.

  Available from: URL:

  http://www.smj.org.sa/PDFFiles/Feb04/Endocarditis.pdf




                               20
9.0   SIGNATURE OF CANDIDATE

10.0 REMARKS OF THE GUIDE: The topic selected is
                           relevant as it attempt to
                           empower the parents about
                           the care of child with CHD.

11.0 NAME & DESIGNATION OF THE GUIDE
      11.1 NAME & ADDRESS:         Dr. G. Kasturi
                                   Principal
                                   The Oxford College of
                                   Nursing
                                   I Phase, J. P. Nagar,
                                   Bangalore-78

      11.2 SIGNATURE OF THE GUIDE:



      11.3 HEAD OF THE DEPARTMENT: Dr. G. Kasturi
                                   Principal
                                   The Oxford College of
                                   Nursing
                                   I Phase, J. P. Nagar,
                                   Bangalore-78

      11.4 SIGNATURE OF THE HOD:


12.0 REMARKS OF PRINCIPAL:              Study is feasible to
                                        conduct in the
                                        hospital settings.

      12.1 SIGNATURE OF PRINCIPAL:




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