How Does It Feel to Be in Isolation Room?

A Narrative Inquiry of Neutropenic Patients

Achmad Fauji

and Aty Nurilawati Rahayu

STIKES Bani Saleh, Bekasi, Indonesia

Keywords: Leukemia, Neutropenia, Patient Isolators, Personal Narrative.

Abstract: Leukemia is a malignancy disease that requires aggressive medical management i.e. chemotherapy. One of

the side effects of chemotherapy on patients with leukemia is neutropenia. Neutropenia requires special

handling including treatment in isolation rooms. This study is an observational study that aims to explore

the experiences of leukemia patients who experiencing neutropenia during treatment in isolation rooms. The

transcribed interviews were analyzed by methods of qualitative research. Participants in this research are

patients currently under treatment in an isolation room or previously ever treated in the isolation room

before. The number of participants in this study amounted to four participants. Research methods in this

study was a narrative inquiry with data retrieval through in-depth interviews using a recorder and field

notes. The results found that almost all patients feeling lonely, all patients have a misunderstanding about

neutropenia and febrile neutropenia, patients have told their hopes as well as coping mechanisms during the

treatment. Suggestions addressed to the healthcare worker to more often to communicate with patients as

long as they are in isolation rooms, providing the patient with counseling and education about neutropenia

and febrile neutropenia before, during and after treatment.

1 INTRODUCTION

Cancer is the leading cause of death in Indonesia

caused by noncommunicable disease after heart

disease (Indonesia health profile: Proportional NCD

2010, 2018). Cancer is not only solid tumors but also

hematologic malignancies. Leukemia is one of

hematology malignancy. Leukemia ranks the top

10th cancers that occur in men in Indonesia (Bray et

al., 2018). Along with the increasing incidence of

cancer cases particularly leukemia, aggressive

medical management needs to be held.

Chemotherapy is one of the main treatment and

medical management for patients with Hematologic

Malignancies that aims to fight various forms of

leukemia and to prevent recurrent disease, where the

drugs were given together in a set regimen

(Chemotherapy for leukemia, 2018). Since each drug

destroys tumor cells in different ways, the

combination of drugs can make the cells susceptible

to treatment. myelosuppression is one side effects

caused by chemotherapy in leukemic patients

(Rieger, 2006). Tervit & Philips (2006 in Coughlan

& Healy 2008) adds that the incident

myelosuppression especially neutropenia is a

cytotoxic side effect of chemotherapy in cancer

patients. Other research by Crawford et al. (2004)

mentions that patients with neutropenia have a high

risk of infection.

Friese (2006) notes that 40% of chemotherapy

toxicity was neutropenia and can develop into

neutropenic fever/febrile neutropenia. Friese (2006)

also explains that febrile neutropenia is the incidence

of neutropenia with fever more than 38.8 C and lasts

7-10 days. While Seth & Bhat (2011) stated that

febrile neutropenia is one of the serious problems of

oncology emergencies. Medical treatment in

Indonesia especially Dharmais Cancer Hospital for

patients who experience neutropenia or febrile

neutropenia is by placing them in a special isolation

room. The impact of patient care in a special

isolation room was feeling of being isolated,

depressed, the patient has a stigma, requires further

information, the lack of social contact, lack of

contact with health care workers having a perception

that physical activity was limited (Campbell, 1999).

Research related to the incidence of neutropenia

in patients has been conducted. Donohue (2006)

conducted a study to evaluate the risk assessment

tool of neutropenia, and recommend the use of the

Fauji, A. and Nurilawati Rahayu, A.

How Does It Feel to Be in Isolation Room? A Narrative Inquiry of Neutropenic Patients.

DOI: 10.5220/0008203400880094

In Proceedings of the 1st International Conference of Indonesian National Nurses Association (ICINNA 2018), pages 88-94

ISBN: 978-989-758-406-0

assessment tool in determining the risk of

neutropenia in patients. Other studies conducted by

Ropka & Padilla, (2007) about the quality of life of

patients with neutropenia, that there were significant

results in a declining quality of life of patients who

experience neutropenia.

A preliminary study describing the experiences

of patients who experience neutropenia has been

done by Fauji et al. (2012) gained five themes,

namely long treatment and care, the perception of

neutropenic patients, the difficulty of self-care, the

support of family and friends as well as the

expectations of the patient while neutropenia occurs.

Another study of adult patients who were in isolation

room has been done as well as being an evidence-

based practice (Rees, Davies, Birchall, & Price,

2000)

When doing nursing practices in the isolation

room, the researcher observes and noted stories from

patients when they experience a neutropenic fever.

Based on observations, then literature searching

related to the response of the patients treated in the

isolation room was conducted. It resulted in a

limited study that reveal the overall patient

experience when experiencing neutropenia or

neutropenic fever/febrile neutropenia during

treatment in isolation room especially

immunocompromised isolation room. The research

question of this study was how does it feel being in

isolation room while experiencing neutropenia or

neutropenic fever?

2 METHODS

The approach has been used in this study was a

narrative inquiry. Narrative inquiry was chosen

because it was able to capture the personal

experience that was hard to described into facts and

opinion (Gail, 2006; Warne & Mcandrew, 2010).

Van Der Riet, Dedkhard, & Srithong, (2012)

explains the advantages of narrative inquiry as it

reveals the order of the information in the

description, the complex linkages with stories of

past, present, and future with culture and social

environment. Through narrative inquiry participants

consciously tell their views in accordance with

reality and include events that cannot be compared

with their present interpretation (Sinclair Bell,

2002); (Warne and Mcandrew, 2010)

Gail, (2006) mentioned that story that was told

was affected by past experiences, social

backgrounds, and situations faced at the moment

including social networking, occupation, and

personal life. Narrative inquiry requires researchers

involved in research as active participants in order to

listen stories being told also directly involved in

analyzing of the stories (Gail, 2006; Sinclair Bell,

2002; Warne & Mcandrew, 2010). Through the

narrative inquiry participants expected can express

their life experiences through a story including the

social environment where the events took place. The

stories revealed by participants is formed due to the

interaction between the researcher and participants.

The framework that is used to perform

exploration research findings using Clandinin &

Connelly (2000). This framework mention three

aspects including temporality, community life, and

spatiality. The third domain of the frameworks was

expected to provide structures in conducting the

analysis of narrative inquiry. The use of the

framework can also provide guidance and direction

in performing data analysis, namely: inwards,

outwards, backward and forwards (Clandinin and

Connelly, 2000). Added by Clandinin & Connelly

(2000) inwards mean to find the emotions and

feelings, while the outwards means to check the

social condition of the surrounding which can affect

the whole story. Changes in the transition to the back

and forward are intended to examine the changes of

emotion which take place in the story.

This research aims at exploring a patient's

experiences who experience neutropenia/febrile

neutropenia in the isolation room. Participants in this

study voluntarily involved without having to tell

their story while experiencing post-chemotherapy

neutropenia or neutropenic fever in the isolation

room. Patient confidentiality is maintained by the

use of pseudonyms in the verbatim transcript,

pseudonyms intended to provide a pseudonym or

alias for each participant. Participants in this

research are patients currently under treatment in an

isolation room or previously ever treated in the

isolation room. A number of participants in this

study amounted to four participants. Data were

collected from August – September 2018.

Instrument that were used were field notes, digital

tape recorder and a list of question for in-depth

interview by the researcher.

Ethical considerations of this research was

conducted through evaluation by the research ethics

committee of Dharmais hospital. All participants get

receive a gift from the researchers because the

participants have to take their time to be

interviewed. All data that were used in this research

were treated as appropriate as possible to ensured

confidentiality from all participants.

How Does It Feel to Be in Isolation Room? A Narrative Inquiry of Neutropenic Patients

3 RESULTS

The results of the interview subsequently transfer

into the verbatim transcript by one researchers and

reviewed by another researchers. Inductive process

become important in order to bring the whole

integrity of the story from all participants.

The first participants

The first story told by Abang (17-year-old) students,

with a medical diagnosis of Acute Myeloblastic

Leukemia (AML), He has been treated in isolation

rooms with chemotherapy of regimen LAM VIII. He

currently under hospitalized in a ward waiting to be

treated back into an isolation room.

Abang’s story

Neutropenia? I didn't know[that].

I can say [that] the leukocytes will drop

drastically so [that] the impact will lead to

infection from outside so ... so ... necessary

sterile room at RIIM [it ideally].

Now I've got a fever, the nurse told me because

of my low leukocytes.

This time I was having fevers and chills, so

Abang wearing blankets and gloves.

Blankets and gloves from home [which] were

brought by my mom’s.

If Abang had a fever like this, Abang wishes

there's a family here.

There's a family but they were outside, it's there

[while pointing out the window, where his

mother sit beside the windows]

Abang wants someone to hug, and someone

caress me. It seems convenient if there are

families especially moms here.

Usually, if Abang has a fever, mostly Abang just

use a blanket to cover my body.

The nurse will come to see and measure my body

temperature and they also give me medication

and sometimes nurses come to have a chat.

Communication with families rather difficult,

Abang often use mobile phones to talk with them.

There is an intercom in this room [pointed an

intercom that hangs on the window].

Abang rarely uses the intercom because Abang

has to get down from the bed, the problem is my

body is too powerless [to] getup, as well as chills

and lethargy.

Lethargy may be due to anemia so Abang also

receive transfusions.

If fever occurs Abang have a feeling of fear of

death, of course.

I'll make it easy, the doctors also say so.

Although sometimes Abang wants a hug and

caress from moms.

I like to think of things that made me happy like I

have no fever, back home, and gathered with

family.

Sometimes I invite a nurse to have a chat, but not

too often, because I know the nurses obviously

being busy, and certainly there are other patients

who need her the most so rarely I have a chat

with a nurse.

I like to read novels sometimes the nurses

borrow mine and vice versa.

A novel, blankets, gloves, laptop or all the stuff I

brought here are allowed but should have been

sterilized.

I've been eight times being hospitalized in RIIM,

often experience a high fever especially after

chemo.

Have a feeling lonely and alone is always there

but there are also feeling like to accompanied by

family, being hug or caress. Eventually, as long

as I been hospitalized my family had never

entered the room to accompany me.

I hope that the family can get into the room, at

least while the fever.

I know families were concerned. I often saw my

mother pray or if I'm like this, my mother's

prayer is also getting longer.

Yes, of course, I also pray, I pray for the fever

went down quickly, so my family especially my

mother not worried.

Well, that's it for today, I feel tired and seemed to

want to go to bed.

Thank you for listening to my stories.

Analysis and reflection

Abang has the wrong concept about neutropenia and

febrile neutropenia. Abang felt that as long as in

isolation room he felt lonely and alone. When febrile

neutropenia occurred, Abang wanted that any family

could accompany him, particularly his mother.

Abang wanted to be embraced by her mother. Abang

stated his hope and cope while experiencing febrile

neutropenia and hospitalized in an isolation room.

The second participants

The second story told by Opung (48 years old),

male, civil servants, his medical diagnosis was

Acute Lymphocytic Leukemia (ALL). Opung was

patient who were treated in the isolation room,

currently undergoing chemotherapy consolidation

phase ARA-C and Daunocyn.

Opung’s story

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

Neutropenia is blood cancer, that is that I know.

It's been almost two and a half months I was

here, the chemotherapy already been 21 times.

The impact of the disease, not just the sick

person, the dying person if God wished, they can

be alive again.

My current conditions, Hmhmhm... let me see,

anyway it's difficult. Now I've got a fever so… I

used two layers blanket.

This room is … (chills) very cold, cold room plus

fever made me chills.

Would like to have ompung boru here to

accompany me. Yes, just accompany here on the

side.

Ompung boru sometimes comes because we still

have young children at home. My kids often visit

me here, but they also have to work, they took

turns keeping at night. Ompung boru took a turn

on Saturday or Sunday.

I Want ompung boru to accompany just to chat

only … yes, the point is accompanied.

I Want to be served, rubbed by her.

Family cannot enter here, mostly looked through

a window, if you want to chat through the

intercom, but in this condition it is impossible?

to get down from a bed, to sit down already

shivering.

In the isolation room, the condition is like this,

alone here and no friend. It’s not good. Most of

the time I watched television or if there is a

family to come we pray together.

The Bible there, I bring it, I read well sometimes.

I want my family could be permitted to enter the

room, especially if I was in fever.

There are nurses who come, giving medicine,

assess, just help me, that's it.

Analysis and reflection

Opung also has the wrong concept of neutropenia

and neutropenic fever. When experiencing a

neutropenic fever Opung wanted his family to

accompany him particularly ompung boru his wife

to accompany and serve him or at least rubbed him.

Opung felt alone in the isolation room. Opung stated

his hope and cope while experiencing neutropenia or

neutropenic fever when treated in the isolation room.

Opung speech sometimes could not be heard and not

clear. During the interview, it could be observed

that he often covered his mouth by blankets. He

looked shivering.

The third participants

The third story was told by Bunda (36 years),

female, private employees. Her medical diagnosis

was Acute Lymphocytic Leukemia. Bunda was a

patient treated in the isolation room with

chemotherapy regimen Vincristine and Daunocyn

phases of ALL 80.

Bunda’s Story

Neutropenic and leukemia may be the same.

Neutropenia that leukocytes will drop

drastically.

Its effects on the kidney and liver because my

stomach enlarges and so bloated somehow.

The nurses said it was like that, and my body

temperature was high, but I did not feel a fever

or chills.

Fever after chemotherapy... One time, [I] also

treated in the same room.

I felt sad at this time, separated from my son if it

was like this.

I want to be able to hug my son again, singing

Nina bobo before bed, I want my son here I mean

here with me but it is not possible, here's a sterile

room, where small children are not allowed to

enter.

My son always stays here with my husband at

night.

In a ward there is my husband. He usually

accompany me, feeding, bathing, too. Sometimes

my son also came. When he comes my son does

not want to go home, want to hug mom he said,

he also misses me.

In this room, not only a small child, but my

husband also cannot enter.

I am confident and optimistic definitely will be

cured, because God does not try His people, this

is just guidance from God.

In this isolation room, the most are quiet and

alone.

Watching television, if there's my husband or my

son comes we chat through an intercom. My son

told me all kinds and everything. It is sad if my

son says "mom I want a hug", So I have to get off

the bed if it's permitted by nurses, and if my

platelets count is not low.

I'll sit close to the windows so I can see him up

close. I want to cuddle and hug my child again.

that's why I'm always optimistic definitely cured.

Analysis and reflection

Bunda, as well as other participants, have wrong

concepts and understandings about neutropenia and

febrile neutropenia. Bunda also said that as long as

she been treated in the isolation room she felt alone.

Some of her daily activities were performed during

treatment. Bunda hopes to embrace and sing a

How Does It Feel to Be in Isolation Room? A Narrative Inquiry of Neutropenic Patients

lullaby to her son during bedtime. Bunda stated his

hope and cope while in the isolation room.

The fourth participants

The fourth story is recounted by Mas An (34

years old), male, worker, his medical diagnosis was

AML. Mas AN was a patient in the isolation room

with chemotherapy regimen Cytarabine 2550 Mg

day 23rd, experiencing neutropenia at day 10th to

20th during treatments in isolation room.

Mas An’s Story

I've been here is five times with the doctor S.

The term neutropenia I don't know. It is my first

time to hear the term.

I think I've never been explained by the nurse or

doctor.

Perhaps it's already explained, but I forgot it

somehow.

Please understand, because I'm sick Mas...

hehehehe (laugh)

Anyway Mas, in the beginning, it felt hurt in my

back if like this (showing the position semi

fowler), next to my body began to feel unwell,

tired, and chills when going to the bathroom.

When it's happening at most I'm kerungkup'an

(wrapping body with the blanket from the feet to

the head) later fell asleep.

One time the nurse L came, he saw me

kerungkup’an at night. He just asked what was

going on, then my temperature being measured,

then she says tomorrow will be checked again

because I fell asleep.

It is better to sleep than waking up, Mas.

I know this room, I would take a rest.

In the regular care room [ward], I do not like the

bathroom, there were seven Patients including

who wait for them so how many, I can't deal with

it, it feels like using public bathrooms. Although

there are more crowded than here.

My feeling is so-so in isolation room, though

quieter here but I could take a rest.

I'm used to the standalone Mas, since young,

before marriage.

I am in Balikpapan work since 2002, wandering

around and lives alone.

So I don't feel anything in the isolation room

The important thing is I can rest, Mas.

My wife and family do not have a problem, there

isn’t feels heavy.

At most, before I enter this room, at night, I eat

what I really want, just like that, Mas.

I have no drawback in the isolation room,

perhaps because it was normal for me to live

independently since 2002, all alone to work in

other villages just like that.

My concern in this room is very cold, and I can't

be free. That’s it.

I hope that my chemo will be ended very shortly,

there's no complication at all.

Analysis and reflection

Mas An, as well as other participants, have

wrong concept and understanding about neutropenia

and febrile neutropenia. Mas An has no problem

being in isolation room because he was used to be

alone by his job since 2002 at abroad, but he had

expressed quiet and alone. While telling a story Mas

An was more excited to tell about another ward

rather than in isolation room. Mas An's hope and

cope while in isolation room and when experiencing

neutropenia has been delivered.

4 DISCUSSION

The results of this study show that the majority of

the participants felt lonely because of being in

isolation rooms. These results are consistent with the

research that has been conducted by Gaskil et al.

(1997) that patients in isolation room will attempt to

gain control over himself due the lack of control

while being in isolation room, as well as losing

contact with both families and health care workers

or in the other word that they felt lonely. Austin et

al. (2013) stated that the patient feels lonely, sad,

worried, bored and need information if they needed

to be hospitalized in single room isolation.

Meanwhile, other research conducted by Forsner

et al. (2009) in children who experience isolation

found a lack of children's interactions with friends

while in the isolation room. This is in line with the

research that has been conducted by Gaskil et al.

(1997), Kennedy & Hamilton (1997), as well as

Campbell (1999), States that loneliness, depression,

the rise of the stigma, the need for adequate

information, the lack of social contact, lack of

contact with health care workers, as well as a

statement that isolation room can cause physical

barriers.

Being hospitalized in isolation room provide

physical or psychological impact, especially on

patients who experience neutropenia and being

treated in the isolation room. The results showed that

patients will experience loneliness during treatment

because of being lonely in a sterile isolation room.

Some patients have been using adaptive coping

mechanisms during undergoing treatment in the

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

isolation room. Biagioli et al. (2016) stated that in

general patient in isolation room felt isolated.

Gammon (1999) suggested that very serious effects

are noted on the psychological well-being of

individuals.

The coping mechanism used by participants

during treatment in the isolation room based on

research such as reading, watching television, or

communicate with families via mobile or intercom

located in the nursing room. These results were

inconsistent with the results conducted by the

(Chircop and Scerri, 2018) in Non-Hodgkin’s patient

showed that they living emotional roller-coaster,

becoming dependent on others and facing an

uncertain future while their undergoing

chemotherapy. Goldsack et al. (2014) reported

affected hospital stay, and 28% (9/32) of patients

reported emotional distress resulting from isolation.

Meanwhile, on lung cancer, patient coping strategies

were concealing the fact of sickness, reducing social

activities, seeking medical assistance, adhering to

treatment, and disclosing dissatisfaction (Liu et al.,

2016). Ghodraty-Jabloo et al. (2016) concluded that

an integral role of the coping mechanism was needed

for effective and ongoing psychological intervention

Patient understanding about neutropenia

especially febrile neutropenia is still misunderstood.

All four participants said incorrectly about

neutropenia and febrile neutropenia. Wengström et

al. (2007) suggested that greater effort was required

to ensured patients understand.

Other findings show that almost all the time all

participant being alone. Nursing staff or physician

some time entering the room to check their

conditions. But most of the time they were left

alone. Mulatsih, Dwiprahasto. and Sutaryo, 2018)

suggested that specific training was required for the

staff nurses to improved their knowledge and skill in

caring for patients.

5 CONCLUSIONS

The results found that almost all patients feeling

lonely, all patients have a misunderstanding about

neutropenia and febrile neutropenia, patients have

told their hopes as well as coping mechanisms

during the treatment. Suggestions addressed to the

healthcare worker to more often to communicate

with patients as long as they are in isolation rooms,

providing the patient with counseling and education

about neutropenia and febrile neutropenia before,

during and after treatment.

ACKNOWLEDGMENTS

The research was funded by research grants of the

Ministry of research and higher education fiscal year

2018.

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