A
Study to Assess the Stress and Coping in Parents of Children, with Cyanotic
Congenital Heart Disease Posted for Surgical Intervention
Mrs.
Deepti M.L.
Tutor, St John’s College of Nursing,
Bangalore
Corresponding
Author Email: deepunelluvelil@gmail.com
ABSTRACT:
Aim of the study: To assess the stress and coping in
parents of children with cyanotic congenital heart disease posted for surgical
intervention
Objectives: To
assess the stress and coping in parents of children, with cyanotic congenital
heart disease.
Materials and methods:
A descriptive, cross sectional study design was used to assess the
stress and coping in parents of children with cyanotic congenital heart disease
(CCHD). In the present study of 100 parents’ i.e. 50 fathers and 50 mothers of
50 children (birth-5years), with CCHD posted for surgical intervention within
two to three days, admitted in cardiology, cardiothoracic and vascular surgery
wards of AIIMS hospital. Parental stress assessment questionnaire and CHIP were
used to assess the parental stress and coping. Data from parents was collected
by self report method using interview method. Descriptive statistics used
included percentage and frequency. SPSS 17.0 was used for statistical
analysis.
Results: Majority of the parents (60-90%) were stressed due to the
congenital cyanotic heart disease of the child and 90% of parents used Coping
pattern I, i.e. maintaining family integration, cooperation, and an optimistic
definition as a measure to cope with stress.
KEY WORDS: All
India Institute of Medical Sciences, cyanotic congenital heart disease, coping health inventory for parents,
children, parents.
INTRODUCTION:
Congenital heart disease (CHD) refers to structural or
functional heart diseases, which are present at birth. The reported incidence
of CHD is 8-10/1000 live births according to various studies from different
parts of the world. In India, we have no
community based data for incidence of CHD at birth. With a believed incidence
rate of 8/1000 live births; nearly 180,000 children are born with CHD each year
in India. Of these, nearly 60,000 to 90,000 suffer from critical CHD requiring
early intervention.
Caring for a child with a chronic illness has been
identified as one of the most stressful experiences for any family. Many
parents react to the initial diagnosis of their child’s cyanotic congenital
heart disease (CCHD) with a lack of acceptance or by denying that there is a
problem. If parents become depressed from the strain and stress of care giving,
then their own health will be impaired, with the possible consequences of
unemployment, child neglect or abuse, and / or marital distress or termination.
Thus, providing care to a child with congenital heart disease could negatively
affect the parents’ as well as the children’s physical and mental health,
resulting in additional increased health care costs For a nurse to provide
satisfactory support for parents suffering from psychological problems, family
members must be encouraged to express their grief and to face and define their
stress, suffering and other psychological, emotional or physical problems. So,
knowledge of the degree of parental stress will promote more efficient nursing
interventions for parents of children with CHD. Numerous studies and conceptual
frameworks has been identified in the western literature that describe the
possible causes and contributing factors of parental stress when a child is
diagnosed with congenital heart disease, but very few in India, especially
about cyanotic congenital heart disease.
MATERIALS
AND METHODS:
In this study a quantitative, descriptive, cross-sectional
survey approach was used. Convenience sampling method was used to collect the
sample. Study variables included stress and coping of parents. Parents of
children (birth-5years), who were undergoing surgical intervention for cyanotic
congenital heart disease, child accompanied by both parents’ i.e father and
mother, parents who had no other family members including siblings of the child
in their family with chronic illness (bronchial asthma, cancer, autoimmune
disorder, congenital heart disease) and parents who were able to read and write
English or Hindi were included in the study. On the other hand, parents
of children (birth-5years), who had other physical or developmental disabilities along with cyanotic congenital
heart disease, parents of children (birth-5years) who had any history of
previous surgical intervention and parents who were not willing to give consent
for the study were excluded from the study.
Present study was conducted at All India Institute of
Medical Sciences (AIIMS), New Delhi. It
is a tertiary care hospital established to serve a nucleus for nurturing
excellence in all aspects of health care. Setting of the present study was
cardiology (CT6) and CTVS (CT4 and CT5) wards of Cardio-Thoracic and
Neurosciences Centre, AIIMS. A sample size of 100 was estimated to be feasible
based on number of cyanotic congenital heart disease surgeries performed per
month. Sample included all parents of
children (birth-5years), with cyanotic congenital heart disease posted for
surgical intervention within two to three days and given consent, admitted in
cardiology (CT6) , cardiothoracic and vascular surgery wards (CT4 and CT5) of
Cardio-Thoracic and Neurosciences Centre, All India Institute of Medical
Sciences.
Sample Design:
As shown in figure 1, there were 60 admissions during the
study period. Out of the 120 parents, six parents refused to give consent for
the study and remaining fourteen parents, either father or mother was absent at
the time of data collection.
|
Total
admissions for corrective and palliative surgery of children during the study
period Number of
children = 60 children ,Parents n = 120 |
|
6- refused to
give consent
|
|
n = 100 parents 84–CT4, 6-CT5,
10-CT6 Wards |
Figure
1: Sample Design
Questionnaires and Technique
used for data Collection:
Questionnaires used in this study for data collection
included questionnaire for assessing demographic profile of parent and child,
Parental stress assessment questionnaire and Coping health inventory for
parents (CHIP). After an extensive review of literature and based on the
objectives of the study, questionnaire to assess the demographic profile of
parent and child and parental stress assessment questionnaire was made. Parental stress assessment questionnaire is a
30-item questionnaire under 5 domains. Items are rated as not experienced/not
stressful, minimally stressful, moderately stressful, very stressful and extremely
stressful. It scored 0, 1,2,3,4 and 5 respectively. Total score ranged from 0 –
150. Content validity of the questionnaire was established by giving the
subject data sheet to five experts, three from nursing and two medical experts.
Reliability was established with test-retest method and Cronbach's alpha of -
.93. CHIP is a questionnaire developed
by Hamilton McCubbin et al. It is a
45-item questionnaire designed to measure parents’ response to management of
family life when they have a child who is seriously and/or chronically ill. It
has three subscales namely Coping Pattern I:
family integration, cooperation and an optimistic definition of the
situation, Coping Pattern II: maintaining social support, self esteem and
psychological stability, Coping Pattern III: understanding the health care
situation through communication with other parents and consultation with the
health care-team. The reliability for Coping Pattern I: was .79, for Coping
Pattern II was .79 and for Coping Pattern III was .71. Permission to use the tool was obtained from
Hamilton Mc Cubbin. All the
questionnaires were translated into Hindi with the help of experts from Hindi
section of Dr. Rajendra Prasad Centre, AIIMS. Back translation was done to
English and necessary corrections were made in Hindi version. Initially, ethical clearance was obtained from AIIMS ethics
committee and pilot study was conducted in June 2011, on 20 parents. After
that, data collection was carried out from July 2011 till December 2011 by the
investigator. Children were admitted in different wards after 2 p.m. CTVS, OPD
and researcher went to collect the data after the admission procedures were
complete. The subjects were screened using the check list of inclusion and
exclusion criteria, good rapport was established and written informed consent
was obtained from parents. Data collection of demographics of subjects and
children was done during the interview in a separate room in CT5 ward. The data
on the clinical diagnosis and operative procedure of the child were obtained
from their clinical records. Instructions were given to the parents about how
to respond to Parental stress assessment questionnaire and the Coping health
inventory for parents and their queries were answered. Time taken for
completing survey for each parent was approximately 1 hr.
RESULTS
AND DISCUSSION:
Demographic Profile of Parents
and Children:
Mean age of fathers’ was 31.70±3.4 years and that of
mothers’ was 27.34±3.2 years. Majorities (90%) of parents were Hindus and (51%)
belonged to rural area. Monthly family income of 43% parents was ≤Rs
5,000 and 41% had family income between Rs 5,001- 20,000. Majority of parents
had joint family (82%). Most of the parents (38%) had taken loans for the
treatment of the child. Fathers’ who had graduation and above were (52%).
Mothers who had primary or middle school education were 36%. Less than half of
the parents (46%) had regular salaried jobs. Majority of mothers (88%) were
house wives. The mean age of the
children was 2.5±1.5years. Majority of children were males (54%). Majority of
children (78%) had undergone corrective surgery and 22% had undergone
palliative surgery.
Figure 2: Distribution of
children according to diagnosis (n=50)
As shown in Table 1, in child symptoms domain most of the
parents were ‘very stressed to extremely stressed’ about ‘child breathing
faster’ (73%), and ‘child turning blue or pale while crying or doing any
activity’ (59%) According to Torowicz D et al
difficult temperament characteristics, namely mood, rhythmicity,
intensity, and adaptability contribute to parenting stress in infants with CHD
during the first six
months of life.
As shown in Table 2, 65% of parents were ‘very stressed to
extremely stressed’ of ‘child turned out to be more of a problem than they had
expected’, and ‘spending most of their time in caring of their child’ (51%)
As shown in Table 3, parents were ‘very stressed to
extremely stressed’ about ‘health professionals are not giving me enough time
to clear my doubts’(28%), ‘health professionals not clearly explaining my child
condition’(26%) .
Stressful Items for parents
of children, with cyanotic congenital heart disease:
Table 1: Stressful items for
parents in child symptoms domain (n=100)
|
Child
symptoms |
Frequency (%) |
||||
|
Not stressful |
Minimally stressful |
Moderately stressful |
Very stressful |
Extremely stressful |
|
|
My
child is not taking feed adequately |
34(34) |
7(7) |
16(16) |
14(14) |
29(29) |
|
My
child is turning blue or pale while crying or doing any activity |
25 (25) |
8(8) |
8(8) |
16
(16) |
43(43) |
|
My
child growth and development is delayed |
72(72) |
5(5) |
6(6) |
5(5) |
12(12) |
|
My
child is breathing faster |
15(15) |
6(6) |
6 (6) |
31(31) |
42(42) |
|
My
child is having a puffy face |
79(79) |
3(3) |
8(8) |
4(4) |
6(6) |
|
My
child is slow to adapt to new things |
76(76) |
5(5) |
7(7) |
8(8) |
4(4) |
Table 2: Stressful items for
parents in parental roles domain
(n=100)
|
Parental
roles |
Frequency
(%) |
||||
|
Not
stressful |
Minimally
stressful |
Moderately
stressful |
Very stressful |
Extremely
stressful |
|
|
I
don’t know the amount of freedom I can allow for my child to do things on his
own |
38(38) |
14(14) |
13(13) |
26(26) |
9(9) |
|
I feel
trapped by my responsibilities as a parent |
33(33) |
10(10) |
10(10) |
22(22) |
25(25) |
|
I
don’t know whether my child will be able to go to school |
56(56) |
7(7) |
13(13) |
11(11) |
13(13) |
|
I am
spending most of my time in caring of
my child |
32
(32) |
11(11) |
6(6) |
22(22) |
29(29) |
|
I
can’t have a closer and warmer feelings for my child |
77(77) |
2(2) |
9(9) |
7(7) |
5(5) |
|
My
child turned out to be more of a problem than I had expected |
23(23) |
3(3) |
9(9) |
23(23) |
42(42) |
Table 3: Stressful items for
parents interaction with health professionals domain (n=100)
|
Interaction
with health professionals |
Frequency
(%) |
||||
|
Not stressful |
Minimally
stressful |
Moderately
stressful |
Very stressful |
Extremelystressful
|
|
|
Health
professionals are not giving me enough time to clear my doubts. |
57(57) |
3(3) |
12(12) |
19(19) |
9(9) |
|
Health professionals don’t introduce
themselves to me. |
57(57) |
9(9) |
13(13) |
13(13) |
8(8) |
|
I feel that they are busy in their own works
and talks. |
63(63) |
8(8) |
5(5) |
14(14) |
10(10) |
|
I
don’t know whom to ask about the child treatment. |
63(63) |
8(8) |
5(5) |
14(14) |
10(10) |
|
Not
clearly explaining my child’s condition. |
58(58) |
9(9) |
7(7) |
14(14) |
12(12) |
|
Health
professionals are using words which I don’t understand. |
61(61) |
10(10) |
6(6) |
9(9) |
14(14) |
Table 4: Stressful items for
parents in parent child interaction domain (n =100)
|
Parent
child interaction |
Frequency
(%) |
||||
|
Not stressful |
Minimally
stressful |
Moderately
stressful |
Very stressful |
Extremely
stressful |
|
|
My child rarely does things for me that make
me feel good. |
53(53) |
13(13) |
10(10) |
12(12) |
12(12) |
|
My child smiles at me much less than I
expected. |
62(62) |
9(9) |
9(9) |
5(5) |
15(15) |
|
I feel hesitant to develop an attachment or
bond with child due to the uncertainty of the child survival. |
76(76) |
8(8) |
7(7) |
6(6) |
3(3) |
|
My child is more demanding. |
31(31) |
13(13) |
14(14) |
20(20) |
22(22) |
|
I feel
unable to observe and understand child’s feelings or needs accurately. |
44(44) |
13(13) |
16(16) |
13(13) |
14(14) |
|
I
often feel my child doesn’t like me and doesn’t want to be close to me. |
89(89) |
4(4) |
4(4) |
1(1) |
2(2) |
As shown in Table 4 about parent child interaction parents
reported that they were ‘very stressed to extremely stressed’ about ‘my child
is more demanding’ (28%). This is contrary to the findings reported by Gardner
FV et al cardiac infants showed significantly less positive affect and
engagement than the non cardiac group similarly, cardiac mothers also showed
less positive affect and engagement than the comparison group. Cardiac mothers
were significantly more distressed than the comparison group.
As shown in Table 5 within the perceived stress symptoms
parents were very stressed to extremely stressed about being ‘unable to sleep’
(54%), ‘feeling of hopelessness in life’ (54%) and ‘ ‘not enjoying things as
they used to be’ (53%). Similarly, Wray
J, Sensky T reported that mothers and fathers of children with cardiac lesions
had significantly higher rates of psychological distress than mothers or
fathers of healthy children. On the
contrary, Spijkerboer AW et al reported that parents of children treated for
congenital heart disease showed lower levels of distress, manifested as lower
levels of somatic symptoms, anxiety and sleeplessness and serious depression.
Table 5: Stressful items for
parents in perceived stress symptoms domain
(n = 100)
|
Perceived
stress symptoms |
Frequency
(%) |
||||
|
Not
stressful |
Minimally
stressful |
Moderately
stressful |
Very
stressful |
Extremely
stressful |
|
|
I feel
unable to control important things in my life. |
41(41) |
7(7) |
16(16) |
14(14) |
22(22) |
|
I
don’t enjoy things as I used to. |
23(23) |
9(9) |
15(15) |
20(20) |
33(33) |
|
I
often feel unable to sleep. |
26(26) |
5(5) |
14(14) |
16(16) |
38(38) |
|
I feel
my life is entirely hopeless. |
37(37) |
5(5) |
4(4) |
19(19) |
35(35) |
|
I wish
that I were dead and away from all this. |
59(59) |
4(4) |
5(5) |
11(11) |
21(21) |
|
I am
not as interested in people as I used to be. |
45(45) |
11(11) |
8(8%) |
13(13%) |
23(23) |
Coping patterns used by
parents of children, with cyanotic congenital heart disease
Table
6: Coping patterns used by parents of
children with CCHD (n=100)
|
Coping patterns |
Min score |
Max score |
Mean ± SD |
Percentage (%) |
|
Coping pattern I Maintaining family integration, cooperation, and an
optimistic definition |
21 |
57 |
44.04±8.4 |
90 |
|
Coping pattern II Maintaining social support, self-esteem and psychological
stability |
1 |
44 |
21.36±8.7 |
59 |
|
Coping pattern III Understanding the medical situation through communication
with other parents and consultation with medical staff |
0 |
24 |
13.65±4.9 |
73 |
Table 6 shows that majority of parents 90% used coping
pattern I. Comparatively less number of
parents used coping pattern II (59%). Young RT, Marilyn M findings too suggest that perceived social
support is a factor influencing the resiliency of relatively high-risk groups
of families who have a child with chronic illness.
CONCLUSION:
Majority of the parents (60-90%) were stressed due to the
congenital cyanotic heart disease of the child. Study findings and tools can be
used by nurses to assess the stress and coping methods used by the parents of
children with cyanotic congenital heart disease. Thereby, nurses can support
the parents of children with CHD such as educating, caring for and providing
guidance regarding the disease, developing plans of care. Hospitals should allocate more staff nurses
in different cardio thoracic wards to improve the nurse patient ratio and
promote adequate counseling and clarification of doubts of parents. In addition
to this, provision of a separate room in each ward, for conducting counseling
sessions for parents in need of counseling. In this study self developed
questionnaire was used to assess the parental stress and parents’ did
subjective assessment of their own situation (stress and coping). Further study may be taken up to explore the
specific factors that cause parenting stress at the different developmental
ages of children with CCHD.
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M D. Home care of infants and children with cardiac disease. Heart Lung.
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Received on 04.04.2015 Modified on 18.04.2015
Accepted on 24.04.2015 ©
A&V Publication all right reserved
Int. J. Nur. Edu. and
Research 3(2): April-June, 2015; Page 196-200
