A Phenomenological Study of Indonesian Mothers’ in Caring for

Children in the Acute Phase of Kawasaki Disease

Lia Kartika

, Dessie Wanda

and Herni Susanti

Faculty of Nursing, Universitas Pelita Harapan, Thamrin Boulevard, Tangerang, Indonesia

Faculty of Nursing, Universitas Indonesia, Depok, Indonesia

Keywords: Acute Phase, Child, Indonesian Mothers’ Experience, Kawasaki Disease.

Abstract: Kawasaki Disease (KD) is an acute febrile disease which attack children under 5 years old with unknown

causes. Very few literature has been published related to the experiences of caring children with KD in

Indonesia. A holistic understanding about KD is necessary to improve nursing care of children with KD.

The purpose of this study was to explore mothers' experience in caring for children in the acute phase of

KD. This descriptive phenomenology study used in-depth interviews to explore Indonesian mothers’

experiences. Fifteen participants were selected through convenience sampling in Jabodetabek area. The

transcripts were analyzed using Colaizzi’s method. The study revealed five main themes: The nature of a

mother: Struggling for the safety of children; when mothers' love conquer fatigue; sustainable family

support; freak out of the high-priced and scarcely treatment; and challenges to access health services. These

findings trigger the government to support Indonesian mothers for the treatment of their children in acute

phase of KD, with caring attitudes as well as social, emotional, and financial supports.

1 INTRODUCTION

Kawasaki disease replaces Rheumatic Fever as a

major cause of acquired heart disease in children in

developing countries (Newburger, Takahashi and

Burns, 2016). Kawasaki Disease (KD) is an acute

disease that mainly affects children. KD is also

known as mucocutaneous lymph node syndrome that

has primary pathological characteristics of fever and

rash due to systemic vasculitis (Ogata, et al., 2013).

Williams (2016) emphasizes that although KD

attacks children of Asian descent with an incidence of

almost 10 in 1,000, it can occur in other children from

different ethnic backgrounds. Men are diagnosed

twice as often as women (Maddox et al., 2015).

Children who are affected by KD may develop

Coronary Artery Abnormalities (CAA) up to 25% in

untreated cases. It is very important to have early

diagnose of the condition since timely treatment can

anticipate the abnormalities development (Singh,

Vignesh and Burgner, 2015).

Children who experienced illness will change the

equilibrium conditions in the family. When a child

experiences KD, it will affect all family members,

especially parents. Research on KD which

investigates the quality of life and psychosocial

function in children is still limited because in recent

decades it has focused more on the etiologic and

complications of KD (van Oers et al., 2014).

Qualitative research that focused on the quality of

life and susceptibility of children with KD in the

Netherlands has found meaningful themes such as, it

explained that parents considered children with a

history of KD to be more susceptible to other

diseases than healthy children, even though in their

daily lives the child appears healthy. The

recommendation of this study was to conduct a

parent-focused study by identifying the burden,

stress level and parents' reactions to the unexpected

thing in this rare child disease (van Oers et al.,

2014). Furthermore, there are recommendation in

doing qualitative research on children diagnosed

with KD from families in different geographical

areas and cultural contexts (Chahal et al., 2010).

The study aimed to explore the experience of

caring for children with KD in the context of caring

in Indonesia. Phenomenology provides a way to be

able to adopt a holistic approach so that the

experience of mothers in caring for children with

KD can be more easily understood (Matua, 2015).

This holistic understanding about KD is necessary

to improve nursing care of children with KD.

Kartika, L., Wanda, D. and Susanti, H.

A Phenomenological Study of Indonesian Mothers’ in Caring for Children in the Acute Phase of Kawasaki Disease.

DOI: 10.5220/0008199400180023

In Proceedings of the 1st International Conference of Indonesian National Nurses Association (ICINNA 2018), pages 18-23

ISBN: 978-989-758-406-0

2 METHODS

2.1 Setting and Design

This study used a descriptive phenomenology

approach to explore the experience of Indonesian

mothers of children with KD. The participant were

selected through convenience sampling with

inclusion criteria as mothers who have treated

children with KD in the 2012-2017 period. The

participants were the most knowledgeable of the

child’s disease and care. The eventual sample size

was contingent on data saturation (Jirwe, 2011). This

research took place from March to April 2017 in the

Jakarta, Bogor, Depok, and Bekasi areas.

2.2 Procedures

In-depth interviews were conducted by a single

researcher used semi-structured interview guideline.

The interview began with a question, "How did you

experience in caring for a child with KD?”. The

researcher was the person who never had contact nor

related to children who have KD. The researcher

also had not been given nursing care for children

with KD. Thus, the researcher who interviewed the

participants perceived herself as having no

preconceived ideas and assumptions about the

participants’ lived experiences. All interviews were

audio-recorded with participants’ consent and

subsequently transcribed. Voice recording used

Digital Voice Recorder with a capacity of 4

Gigabytes, 96 hours duration. Field notes were

written following the interviews.

2.3 Data Analysis

The study analysis was conducted manually used the

Colaizzi’s method (Shosha, 2012). Discussion

among team members were held to review the

transcript, discuss emerging themes, and assess the

degree of saturation. In this study, the researchers

gave freedom to participants to give their own

pseudonym. Participants who were given the

opportunity to choose their pseudonyms felt a

meaningful process than when asked to choose

candidates for pseudonyms from researchers (Allen

and Wiles, 2015).

2.4 Ethical Consideration

This research has been reviewed by the Ethics

Committee, and was conducted with approval of the

Ethics Committee of Faculty of Nursing at

Universitas Indonesia, on March 23, 2017, with the

certificate number ethics approval letter was

57/UN2.F12.D/HKP.0204/2017.

3 RESULT AND DISCUSSION

Fifteen Indonesian mothers were recruited in

Jabodetabek area using the convenience sampling

technique. Most participants were mothers who had

a the first experience of looking after children with

KD infection. The participants were between 28 – 46

years old and were the person who gave direct care

in caring children with KD. The average interview

length was 58 minutes. Five main themes emerged

from the participants; The nature of a mother:

Struggling for the safety of children; when mothers'

love conquer fatigue; sustainable family support;

freak out of the high-priced and scarcely treatment;

and challenges to access health services.

The Nature of a Mother: Struggling for the

Safety of Children.

Participants revealed that in caring for children with

KD in an acute phase, mothers have undertaken

various efforts to overcome some problems such as,

the mother tried to fulfill children’s basic needs,

maintain child safety, protect children because of the

condition of children who are vulnerable, give

medicine at home, and provide comfort to children.

Participants stated that the effort was carried out

extra than treating a child with a common illness like

common cold.

While the mothers were struggling and felt

effortful, yet they appreciated themselves as the only

one to relied on in the course of caring for KD

children. A mother even imagined herself to be

called as an angel by her ill child, as shown in the

following quotation.

"I'm the one who do everything, I mean,

everything… because… my child… He didn’t

want to be with other people, no one beside

me. Hm.. maybe he thought, ‘Mommy is an

angel’.. Yes he thought me like that…"

(Wina)

"... but I didn't think about it, I never thought

.. oh the hospital is expensive. Uhm no... the

important thing is my child was given the

treatment. Wherever… Wherever it was, I will

find out.. I’ll do everything..." (Tata)

A Phenomenological Study of Indonesian Mothers’ in Caring for Children in the Acute Phase of Kawasaki Disease

Mothers of KD children had performed some

efforts to enhance safety and comfort for the

children. The continuous high fever was one of the

signs of KD that mothers tended to be more worried

about adverse effects of fever such as brain damage

and seizures. This issue is confirmed with some

studies as the mother participants stated unrealistic

concerns about the improbable complications of

fever, such as brain damage, unconsciousness, and

loss of hearing/vision were believed (Kwak et al.,

2013; Marui et al., 2011).

Mothers have the primary responsibility for

caring for sick children physically and emotionally.

The practice of handling physical care has

consequences for changing the mother’s pattern of

daily activities. Families recognize the role of

mothers in their sensitivity and responsiveness to

children that fathers do not really know what to do

with children when they are sick. Mother have the

primary responsibility in the child's physical care

and the achievement of planning care activities, but

also carries emotional responsibility (Neill, 2010).

When Mothers' Love Conquer Fatigue.

At the beginning of the disease, mothers in the

current study stated that their child had a high fever

continuously. Most of the mothers felt worried and

tried to do everything to comfort their children. The

mothers accompanied the children, measured body

temperature every two hours, gave fluid during the

days and nights for several days.

"... so, it was first in the room... the first

night, the second night, the third night... too

exhausted. I felt dizzy, painful headache. I

had… I don't know (confused).. I just can't

sleep right. The fever didn't go down ... so we

can't sleep… my eyes closely fixed on him

and then… I saw he delirious (teary eyes).

"(Namu)

In the period of caring children with KD, the

mothers did not only experience physical

exhaustion, but also emotional fatigue. The mothers

felt that their children were experiencing too much

pain. In the bottom of mothers’ heart, they were

hoping that the child sickness could transferred into

the mother’s body.

"... he was physically ill, but I were also felt

sick heartedly, so ... well it’s ok.. the point is

I learn to be strong ..." (Pinky)

In the midst of fatigue, some of mothers were

also grateful for having strength from God. The

mother never told or showed how they really felt,

but they chosed to firm and keep their smile in front

of the child.

"Alhamdulillah (praise be to Allah – God), I

mean ... I was so tired, but I was still given a

healthy body from God (sighing). Yes.. maybe

God also knows the times, we... I mean to

survive, to survive with it... I really have to be

strong for my child" (Diana)

Mothers were repeatedly saying that caring the

children with KD is the hardest moment in life. It

was totally different with caring children with other

illnesses. Mothers really struggled for the safety of

their child. In spite of geographical area, this theme

also confirmed by the definition of a good mother in

the Australian context, that a good mother is

required to be loving and caring, to have “never-

ending” supplies of patience, to willingly and

regularly spend time with her children, and in this

time provide her children with the right sort of

attention, stimulation and guidance. Furthermore, a

good mother required to remain calm and relaxed at

all times, to be a good listener and communicator,

and to be understanding and sensitive to children’s

needs (Dewi, 2011).

Sustainable Family Support.

Another unpleasant symptom experienced by

children are headache and pain throughout the body.

Children often become more irritable and tended to

cry. To overcome these inconvenience symptoms,

mothers provided comfort by hugging, giving gentle

rocking, and kissing the child. Sometimes fathers

and other family members also helped to hold the

child, while mother feed food and medicines.

"... I didn’t exert by myself, there were my

parents, parents-in-law, all kinds...

accompanied me." (Elsa)

During the treatment, the mother was also

assisted by her husband in managing hospital’s

administration. The husband also helped the mother

to get information about KD from the internet, social

media, and other resources. Finally, the husband also

provided psychological and emotional support

throughout the process.

ICINNA 2018 - The 1st International Conference of Indonesian National Nurses Association

"Yeah … This is it, I was grateful if I see ...

mm-hmm, at that time ... it could ... what is it

... a lot of help too... about information ... I

got help and support from husband..."(Susan)

The extended family also prayed the child from a

distance. By using the video call WhatsApp

application, the family could interact with the child.

The mother and child did not feel too lonely even

when they were in an isolation room. Above all of

these efforts, mothers were so grateful for such

viable supports sourced from all family member.

"Well ... about everyone, Alhamdulillah. I

have friends and family that really support

me..." (Diana)

This findings confirmed a previous study in that

mother who received person-centered and family

centered care felt more supported and were more

likely to adjust with the stresses (Bruce, Lilja and

Sundin, 2014).

Freak Out of the High-priced and Scarcely

Treatment.

The mothers were not only surprised to know the

name of the disease, for its unfamiliarity, but they

were also shocked when they found out the price of

the medicine. The mother received information that

the treatment must be given immediately so that

their child's heart will not be injured. All of the

participants were freak out because they did not

expect the price of the medicine.

"It's really expensive, yeah.. The medicine...

It's very expensive... huh ... it's expensive ...

One ampoule it’s about 9 million and I have

to buy 5 ampoules for my child. 54 million

must be... must be given to the hospital

cashier. The drug were given in the evening

and finished in the morning. Just like that.. 54

million rupiahs!! (loud voices). It was all

depending on the children’s weigh. If the

child gets bigger, gets fatter, the more... the

more immunoglobulin must children get”

(sighing). (Cheryl)

The mother was explained that the dose of the

drug given was by the child's weight. Based on

this, the family knew how much they must pay to

the hospital. A mother said, this moment was the

most stressful part, because they had to find money

in a short time.

“ In the fact.. I am looking for loan. From

everyone. I mean.. everyone. Because I’m not

a kind of person who have a lot of millions

rupiah in my account. (silent). In the end, I

could get the money in an hour. At least I

could give 80% of the deposit money to the

hospital, right? For.. hmm.. For the IVIg

thing..” (Mawar)

Even though they cried for the expensive cost

but in the end they showed a strong commitment to

tackle the financial issue as the best they could, as

illustrated in the following statement.

“InsyaAllah (If God wills so).. I will pay all

the needs. I just prayed in that way.” (Lisa)

The mother as the primary caregiver of the child

was shocked at the high cost of the IVIg. They never

thought of such an expensive drug and did not have

much money in a short time. Intravenous

Immunoglobulin (IVIg) remains the treatment of

choice for KD (Singh, Vignesh and Burgner, 2015).

The dose administration of IVIg was changed from

its initial dose of 0.4 g/kg/ d over 4 day to a single

pulse dose of 2g/kg in 1991. Newburger et al. (2004)

signified improvement resolution in this regimen

that is now widely used. It was also stated that the

beneficial effects of IVIg in preventing development

of CAA are more when the IVIg is administered in

the early phase of the illness. Moreover, McCrindle

and Selamet Tierney, (2017) stated Acetylsalicylic

Acid (ASA) as a combination also has been used for

treatment of KD for its anti-inflammatory effects

and antiplatelet effects, and is recommended as

standard therapy during acute illness by both

American Heart Association and the Japanese

Society of Pediatric Cardiology and Cardiac

Surgery.

Some mothers were worried but not too long

until they decided to do all efforts including to debt

from other people, as long as the child could be

treated immediately. This kind of situation happened

because not all mothers had a well-established

financial condition. Today Indonesia is one of

developing countries. Indonesia has made an

impressive breakthrough in alleviating poverty,

supported by high per capita income growth and

programs efficient and well-targeted poverty

alleviation. However, there are large income

inequality and even increased over the past decade

(Elias and Noone, 2011). Similar to Indonesia, the

cost of IVIg is prohibitive and in most instances the

parents in developing countries like China and India

A Phenomenological Study of Indonesian Mothers’ in Caring for Children in the Acute Phase of Kawasaki Disease

have to bear the expenses (Singh, Vignesh and

Burgner, 2015).

Despite of Indonesia, the availability of IVIg in

China and India is not an issue and several brands are

available. However, many other developing countries

do not have ready access to IVIg. The fractional

facilities in China are freely available therefore the

products that are marketed are made from local

plasma. Nowadays, India does not have large scale of

fractional facilities and most of the marketed product

are based in plasma that has been fractioned overseas.

Though several brands of IVIg are marketed in India,

only two amongst these are approved to be

administered by the United States Food and Drug

Administration (USFDA)/ European Medicines

Agency (EMEA) and becoming the most expensive

brands. The cost of the former is 2-3 times the cost of

other brands which do not meet the safety

requirements (Singh, Vignesh and Burgner, 2015).

Regarding the selection of the IVIg brands, the

mother said that the doctor initially explained the

type, price, the advantages and the disadvantage of

each of the IVIg. The physician had given the

decision entirely to the family. Some of the mothers

ended up using IVIg that was made from China

because the price was more affordable. This is

similar with Singh, Vignesh and Burgner, (2015)

that in practice one still ends up using the latter

brands because of economic consideration, but the

option to select a brand must be given to the parents

after appropriate counselling. The information must

be clearly understood that IVIg, as a human blood

product, has the potential in inducing serious

anaphylactic reactions and transmitting blood-borne

infections.

Challenges to Access Health Services.

In providing care to children, participants tried to

reach supporting health facilities. Participants found

obstacles to find health workers during holidays,

limited availability of the drug supply, and the

difficulty of finding special medical personnel or

cardiac specialist child. However, mothers continued

to strive for children to access the needy health

facilities. The following are some participants’

statements:

"I went to the drug store by my own … I

went to several pharmacies. I don’t care, the

point is I have to grab it fast.

The pharmacist said, it's difficult. They don’t

have much. Even if we have one. It’s

impossible to get started. because there's no

way it can be stop in the middle of the

treatment. We can’t give half of IVIg and

stop, then we continue. No we can’t! The

IVIg must be continuously given". (Mawar).

“Confused.. Overall I am confused ... Uhm..

I’ve just heard such a disease. I don't know

what to do. What kind of doctor do I had to

find, because there’re still not many

pediatrician that specializes in the child’s

cardio. I can't look for an adult

Cardiologist, cause it different, right? It

different with pediatrician who take child’s

right? (Mawar)

In the way of finding the right health care for the

children, mothers felt confused because the lack of

paediatric cardiologists in their neighbourhood for

treating the children. This is similar with the study

that stated mothers felt frustrated when they

encountered deficiencies within the healthcare

organizations (Bruce, Lilja and Sundin, 2014).

Mother have to struggle for resources and to face

barriers in accessing health service (Bristow et al.,

2018). Another study also corroborates the needs of

governmental program, policies, and adequate formal

supports for family who have children with rare

disease (Baumbusch, Mayer and Sloan-Yip, 2018).

4 CONCLUSIONS

Caring children with KD is still a rare experience,

especially in Indonesia. These findings trigger all

government parties to support Indonesian mothers in

her effort throughout the treatment process in acute

phase of KD, with caring attitude, social, emotional,

and financial policy support.

ACKNOWLEDGEMENTS

A sincere thank is expressed to all the participants

for their time to participate in the interview. Their

valuable experiences were crucial to understanding

mothers’ experiences of caring children with KD.

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A Phenomenological Study of Indonesian Mothers’ in Caring for Children in the Acute Phase of Kawasaki Disease