Enferm Clin.

2020;30(S3):10---13

www.elsevier.es/enfermeriaclinica

Family concern: Facilitating self-management of

patients undergoing hemodialysis夽
Cholina Trisa Siregar a,∗ , Zulkarnain b , Siti Zahara Nasution a ,
Jenny Marlindawani Purba a , Evi Karota a , Bayhakki c , Muhammad Pahala Hanafi Harahap d

a
Faculty of Nursing, Universitas Sumatera Utara, Medan, Indonesia
b
Faculty of Psychology, Universitas Sumatera Utara, Medan, Indonesia
c
Faculty of Nursing, University of Riau, Riau, Indonesia
d
Faculty of Medicine, Universitas Sumatera Utara, Medan, Indonesia

Received 27 August 2019; accepted 16 December 2019

KEYWORDS Abstract
Chronic disease; Objective: The objective was to describe the experience of patients in self-managing.
Renal dialysis; Method: Phenomenology design was used in this study. Fifhteen of families who have family
Self-management; member which undergoing hemodialysis were recruited as participants. In-depth interviews
Quality of life were conducted at April to July 2018 to explore of the experiences of family in patients’ self-
managing. Data were analyzed using Colaizzi.
Result: We found four themes of patients’self-management which reported by their family.
There themes were (1) having positive and negative views on life changes after undergoing
hemodialysis, (2) spirit for undergoing the process of hemodialysis, (3) controlling the activity
and (4) limitation of food while undergoing hemodialysis and patient’s expectations during
hemodialysis.
Conclusion: Self-management of patients who receive hemodialysis includes self-management
in physical form (controlling activities and food restrictions) and psychological (views on life
changes and life zest).
© 2020 Elsevier España, S.L.U. All rights reserved.

夽 Peer-review under responsibility of the scientific committee of the International Conference of Indonesian National Nurses Association

(ICINNA 2019). Full-text and the content of it is under responsibility of authors of the article.
∗ Corresponding author.

E-mail address: cholina@usu.ac.id (C.T. Siregar).

https://doi.org/10.1016/j.enfcli.2019.12.015
1130-8621/© 2020 Elsevier España, S.L.U. All rights reserved.
Family concern: Facilitating self-management of patients undergoing hemodialysis
Introduction
Hemodialysis is a therapy that is widely used by patients with
decreased kidney function and requires patients to undergo
hemodialysis. Hemodialysis is required 12---15 h per week or
3---4 h per hemodialysis session which is carried out contin-
uously throughout life.1 Hemodialysis patients in Indonesia
continue to increase every year. Indonesian Kidney Registry
data increased by 11,689 patients in 2015.2
Hemodialysis patients experience various complications
such as skin irritation, insomnia during or after undergoing
hemodialysis, hypertension, hypotension, muscle cramps,
vascular access problems, cold, headaches, itching, nausea
and vomiting. This condition can disrupt the quality of life
of patients such as physical, psychological, spiritual health,
socio-economic status and dynamics in family forums.3
The process of hemodialysis is very helpful for patients
with chronic kidney disease, especially end-stage because
nephrons are functioning at 15% (end-stage or end-stage
kidney failure).4 The process of hemodialysis is done as
an effort to extend the patient’s life. This process helps
patients restore damaged kidney function, to improve the
welfare of patients with chronic kidney failure. The func-
tion of the kidneys as a means of cleaning blood can be
replaced by a hemodialysis machine, but the process causes
health problems for patients. Dependence on the hemodial-
ysis machine also causes perceived physical, psychological
and social problems such as the burden on the sufferer.4 One
of the causes of the decreased psychosocial state of patients
undergoing hemodialysis is failure to adapt to the current
situation. Overcoming problems that occur requires good
self-management in patients undergoing hemodialysis.5
Self-management of patients with hemodialysis patients
must be an important concern for health professionals, espe-
cially nurses because it can be a reference for the success of
an intervention/action or therapy. In addition, data about
self-management can also be preliminary data to be con-
sidered in formulating appropriate interventions or actions
for patients. Self-management is a way for patients to
improve their health status by managing themselves through
changes in a patient’s lifestyle.6 Self-management is a way
to increase motivation, personal ability, control the abil-
ity to achieve good things, and develop various abilities to
become better.7 The results of8 obtained data on the level of
self-management of hemodialysis patients are still low than
the ideal level of self-management, so that patients feel
that he is a burden to his family. Good self-management
in hemodialysis patients can reduce morbidity, mortality,
complications and increase patient life expectancy.9
From a search for print and electronic literature (inter-
net), several studies have been carried out relating to
quality of life in hemodialysis patients in several developed
countries. While in Indonesia, data are still rarely found or
the results of research on the self-management of hemodial-
ysis patients.
Method
This research uses a qualitative study with a phenomeno-
logical design. This design was chosen so that participants’
experiences could be explored more clearly so that
11
the description of the patient’s self-experience during
hemodialysis could be clearly illustrated. This method is
very appropriate to be used to explore the phenomenon
of patient self-management because each patient has his
own experience in self-management during hemodialysis
in accordance with his views of himself. The study was
conducted in the city of Medan in the hemodialysis room
because Medan is a city of diverse ethnic groups and the
capital of North Sumatra. The existing hospital in the city
of Medan is also a referral hospital from several surround-
ing provinces. The study began in March---October 2018, data
collection was conducted in April---July 2018. The number of
participants in this study was 15 participants. Participants
were taken using purposive sampling with inclusion criteria:
willing to be a participant, not experiencing communication
problems, good physical and mental condition, undergoing
hemodialysis for more than 6 months. Exclusion criteria are
patients who have complications and patients who are not
routine hemodialysis.
Data collection in the hemodialysis room when patients
undergo HD therapy. Data collection using in-depth inter-
views conducted by researchers themselves with a duration
of 55---60 min. Data collection was assisted by other
researchers in terms of recording participant responses
during interviews. The interview process was carried out
several times to get data saturation. Data collection tools
in this study were demographic data questionnaires, inter-
view guides, field notes, and voice recorders. The interview
guide consists of 5 open-ended questions such as what to
expect during hemodialysis therapy, problems that often
occur during hemodialysis therapy, actions taken to over-
come problems and others.
Qualitative data analysis using the Colaizzi model with
9 stages ranging from describing the phenomena under
study, collecting descriptions, reading all descriptions, read-
ing transcripts of interviews, describing existing meanings,
organizing meaning collections, writing complete descrip-
tions, meeting participants to validate descriptions and
combining data results into the theme. Ethical consideration
was approved by the USU Faculty of Nursing Health Research
Ethics (1333/III/SP/2018). The limitation in this research is
that triangulation of sources, methods and theories is not
done.
Results
The first participant of the husband of the patient aged
65 years, secondary education tribal minang; the second
participant was a 30-year-old female patient, high school
education Batak tribe; third participant husband of 68-year-
old patient of middle school education Batak tribe, fourth
participant is wife of 62-year-old patient with Batak tribal
junior high school education, fifth participant of wife of
patient age 55 years of junior high school education of Java
tribe, sixth participant husband of middle school education
patient first age 52 years old Batak tribe, participant sev-
enth wife of middle education patient over age 45 years old
Javanese tribe, participant eighth daughter of high school
education patient Minang tribe, participant ninth wife of
patient age 66 years old middle school education Batak
tribe, participant of tenth wife of patient age 45 years old
12
middle school education Batak tribe, the eleventh partici-
pant of the husband of the age of 50 years of junior high
school education, the twelve participants of the husband of
the age of 61 years of senior high school education of the
tribe, the thirteenth participant of the child of the patient
aged 35 years of school education en middle of the Batak
tribe, participant of the fourteenth husband of a patient
aged 62 years of junior secondary education Batak tribe,
participant of the fifteenth wife of a patient aged 40 years
of high school education in the Minang tribe.
There were 4 themes emerged from this study, namely
(1) Having positive and negative views on life changes
after undergoing hemodialysis, (2) Passion for undergoing
the process of hemodialysis, (3) Controlling the activ-
ity and limitation of food while undergoing hemodialysis
and (4) Expectations that patients have during undergoing
hemodialysis.
Theme 1. Having positive and negative views on
life changes after undergoing hemodialysis
The patient has a view of the changes that occur to him,
these changes occur due to illness and routine in undergoing
hemodialysis. The views given by patients vary in the form
of negative and positive views. Negative views such as, the
patient feels his life is not in accordance with the wishes
because of illness, feeling dissatisfied with life because it is
not in line with expectations, feeling life becomes depen-
dent, feeling hopeless.
‘‘. . . There’s still a lot that you think about, it’s not the
same as what you were thinking about . . . yeah, even the
ordinary people don’t need a crew too, do you expect too
much. But even then it’s still far from what you expect’’
(P7).
Not only does the negative view of the patient also have a
positive outlook on living his life as the patient feels satisfied
because he has been able to return to activity, feels that life
is approaching the ideal even though he is sick, accepts the
condition after illness, grateful for the conditions that occur
‘‘. . . I can move, I can work, I can be with family, together
with children . . .’’ (P10)
Theme 2. Passion for undergoing the process of
hemodialysis
The patients are eager to undergo the treatment process.
The enthusiasm of the patient can be attributed to the sup-
port of the family and the enthusiasm of their own.
‘‘Yes, be enthusiastic, for the best, you will live’’ (P6)
‘‘Well, that’s what makes me excited and indeed the
reality. Until now it’s been able to do nothing, it’s just
that it can’t be too tired, it must be controlled’’ (P11)
C.T. Siregar et al.
Theme 3. Controlling the activity and limitation of
food while undergoing hemodialysis
In undergoing hemodialysis patients maintain activities car-
ried out in daily life and also maintain food consumption to
maintain their health to remain stable
‘‘Sadly, we can’t eat food. Sadly, but already said doctors
don’t eat, if eaten it arises. Later will the doctor be
asked whether you eat?’’ (P10)
‘‘. . . during this work it can’t work, the second we move
it is difficult because it’s a little bit he wants him to be
dizzy, wants to go, just wants to be limp’’ (P4)
Theme 4. Expectations that patients have during
undergoing hemodialysis
Patients have very high expectations for recovery, patients
have hope for recovery for their families and can undergo
activities such as before undergoing hemodialysis.
‘‘. . . Hopefully, God will give healing so that I can meet
with the family’’ (P15)
‘‘. . . If I hope, I want to ask for a cure, right, ask the
Almighty to get well soon . . .’’ (P3)
Discussion
The studies found that participants had positive and neg-
ative views on life changes after undergoing HD. Positive
views of participants can accept the state of having to
undergo hemodialysis. Forms of support such as attention
are needed by patients to reduce the emergence of neg-
ative feelings such as depression and feeling a burden on
the family. Families and health workers have a function to
improve health status and influence the patient’s view of
the disease during treatment.10 One participant revealed
that if patients are left alone without attention, patients
will tend to daydream and negative feelings will arise that
will automatically affect the quality of life. After coming
home from the hospital just sleeping and watching TV, the
activity was so repetitive because of dependence on others
due to physical weakness.
The state of participant psychology decreased where
participants felt bored, desperate and felt a burden since
undergoing hemodialysis. The psychological state of the par-
ticipants has declined since undergoing hemodialysis. The
goal of fifteen participants revealed a psychological bur-
den such as being bored, desperate and feeling a burden
to the closest person. One participant revealed that he
felt a burden to his child so that negative feelings always
arise such as despair and thought it would be better to
just die. Saturated feelings also arise because every two
weeks you have to undergo hemodialysis therapy. This is
consistent with research conducted by Welch et al.11 men-
tioning that the psychological quality of participants is felt
to decline where participants feel embarrassed, hopeless
and feel guilty which can cause depression in participants,
quality of life is also influenced by psychological factors like
anxious
Family concern: Facilitating self-management of patients undergoing hemodialysis
The enthusiasm generated by the patient is inseparable
from the support made by the closest person, especially the
family. The source of social support needed by participants
is support from families such as husband or wife partners,
children, mother’s father and coworkers expressed almost
by all participants. Social support sources in implementing
self-management of patients undergoing hemodialysis are
obtained from spouse, family, and fellow patients under-
going hemodialysis.6 A form of support needed by the
participants obtained by researchers, namely attention,
family support and support for the work environment or
friends.
The results of the study showed that participants expe-
rienced limitations in carrying out their activities. A change
in social activity and interaction was expressed by all par-
ticipants since they experienced illness and underwent
hemodialysis therapy. Before experiencing pain participants
routinely conduct social activities such as wirid, pengajian,
and sholat in the nearest mosque or musholla. However,
since experiencing pain and hemodialysis therapy all par-
ticipants’ social activities are reduced because of physical
conditions that are easily exhausted and must stop work-
ing because they are unable and physically weak. The
decrease in the frequency of socialization was expressed
by five participants who were entirely due to physical
conditions that were not possible, according to a study con-
ducted by Vann et al.,12 which stated that since undergoing
hemodialysis therapy the participants’ activities changed
and were disrupted resulting in less able to interact and
socialize. Participant mobility in this study experienced
disorders such as limiting travel and no travel activities
since the illness. Participants limit travel activities because
of their dependence on weak hemodialysis and physical
therapy (unable to walk) which is only able to travel if
riding a vehicle such as a car. This is in accordance with
the research conducted by Hemmelgarn et al.,13 which
states that patients with chronic renal failure undergoing
hemodialysis experience impaired mobility due to a sched-
ule of therapies twice a week so that patients cannot go
beyond 3---4 days. The studies found that the expectations of
patients undergoing hemodialysis. The patient really hopes
to get well. The patient has accepted that he is under-
going hemodialysis, with the condition that the patient
who first undergoes hemodialysis encourages the partici-
pant to enter the receiving stage, this stage is indicated
by the attitude of the participant who surrenders and sur-
renders all to God and hopes to recover. Expectation will
arise if the patient has received his condition undergoing
hemodialysis.13
Conclusions
Patients undergoing hemodialysis have very varied self-
management experiences. Patients have a positive and
negative outlook on living their lives. But there is always
hope to live a normal life like before undergoing hemodialy-
sis. Self-management of patients with hemodialysis patients
is an important concern for health professionals, especially
nurses because it can be a reference to the success of an
13
action/intervention or therapy. Management of patient’s
self-management can be a nursing action especially for
patients undergoing hemodialysis.
Conflict of interests
The authors declare no conflict of interest.
Acknowledgments
The authors thank the Ministry of Research, Technology,
and Higher Education, the Republic of Indonesia for fund-
ing this research through Research Grant in 2019 no.
5211/UN5.1.R/PPM/2019.
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