ANALISIS JURNAL

Nursing Process On Terminal Disease

Afifa Mardatilah (1711312028)

Della Ramadhani (1811312042)

Fadilah Lukvianti (1711312012)

Febri Yeni Susilawati

Miftahurrahmi (1711313040)

Nadya Maharani

Silvia Zuela (1711313030)

Suci Rahmadini Agusty (1711312044)

Putri Mulya (1711311034)

Rifa

Riski Novita (1711311020)

Velia Atika Areny (1711313016)

Program Studi Ilmu Keperawatan

Fakultas Keperawatan

Universitas Andalas

2019/2020
Jurnal 1
International Journal of Nursing Studies 91 (2019) 134 –143

Contents lists available at ScienceDirect

International Journal of Nursing Studies

journalhomepage:www.elsevier.com/ijns

The effectiveness of a nurse-led short term life review intervention in enhancing

the spiritual and psychological well-being of people receiving palliative care: A
mixed method study

a b, b
Cecilia W.M. Kwan , Carmen W.H. Chan *, Kai Chow Choi

a. Bradbury Hospice, New Territories East Cluster, Hospital Authority, Hong Kong Special Administrative Region

b. The Nethersole School of Nursing, The Chinese University of Hong Kong, Hong Kong Special Administrative Region

Anxiety

Depression

ARTICLE INFO
Life review

Palliative care
Article history:

Spiritual well-being
Received 8 May 2018

Received in revised form 12 December 2018

Accepted 12 December 2018

Keywords:
 intervention or control groups by computerised randomisation. Both participants and outcome assessors were blinded to the
group assignment. Settings: The study was conducted in three publicly funded regional hospitals in Hong Kong.

Participants: The target population were people suffering from life-limiting diseases, and receiving hospitalised, day hospice
ABSTRACT
or outreach home care from the palliative care team.

Background: A life review is a promising
intervention to enhance spiritual well-being in
older people.
Methods: Two sets of questionnaires were used: the spiritual sub-scale of the McGill Quality of Life Questionnaire, Hong
Kong version and the Hospital Anxiety and Depression Scale, Chinese version. The intervention process was assessed by
means of observation log sheets and semi-structured interviews of 12 participants.

Conventional life review interventions are Results: A total of 109 participants were recruited (54 in the intervention group, 55 in the control group). The intervention
lengthy and often led by psychologists. group showed significantly more improvement in spiritual well-being than the control group, with a Cohen’s d-effect size of
0.65. Although there were improvements in both anxiety and depression levels in the intervention group, statistical
significance in between-group comparisons was not reached. The process evaluation found that most participants were highly
Objectives: This is the first randomised involved (92.6%), interested (77.8%) and participated in the intervention (79.6%). The participants described the intervention
controlled trial study to examine the process as ‘comfortable’, ‘relaxing’ and ‘interesting’, and felt enlightened, with raised self-awareness, after it.
effectiveness and applicability of a nurse-led
short term life-review intervention in people
with life limiting diseases, the purpose being to
enhance their spiritual well-being and lower
their anxiety and depression. Conclusion: The nurse-led short term life-review intervention demonstrated significant improvement effects in spiritual well-
being. Participant feedback on nurses’ performance was positive, finding the intervention acceptable and useful. The setting of
the intervention has now been extended from bedside to home. It is recommended to incorporate life review into palliative
Design: A sequential mixed method approach,
nursing specialty training, empowering more nurses to deliver the intervention in their daily practice.
randomised controlled trial and qualitative
evaluation, was adopted. The intervention
group received the short version life review,
and the control group attention placebo. © 2019 Elsevier Ltd. All rights reserved.
Participants were randomly assigned to either

What is already known about the topic?

Life-review interventions have demonstrated their value for older people to

re-evaluate their life events and promote their spiritual well-being.

Conventional life-review interventions are too lengthy, beyond the physical

 Corresponding author at: 7/F, Esther Lee Building, The Nethersole School of Nursing, The tolerance of people receiving palliative care, and often conducted by
Chinese University of Hong Kong, Shatin, New Territories, Hong Kong Special Administrative
Region.
psychologists
E-mail address: whchan@cuhk.edu.hk (C.W.H. Chan).

https://doi.org/10.1016/j.ijnurstu.2018.12.007

0020-7489/© 2019 Elsevier Ltd. All rights reserved.

 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143 135

care who, whatever their chronological age, are nearing the end of their lives.
They may face the same developmental crises being experienced by the
What this paper adds elderly and demonstrate a decline in their functions, thereby prompting them
to review their past life experiences (Jenko et al., 2007).

This research paper documents the first randomised controlled trial to test a
nurse-led, short term life-review intervention for people receiving palliative
care.

The results demonstrate the effectiveness, acceptability and feasibility of
short-term life-review intervention in enhancing the spiritual well-being of
people receiving palliative care.
The intervention settings are extended from hospital to day hospice care
and home settings.
Life review offers people receiving palliative care an opportu-nity to
express their emotions, confirm their roles in life, reassess their attitudes
towards death and reorganise their perspectives towards life (Ando et al.,
2008; McSherry, 2011). People who can

1. Introduction

Palliative care is an approach that improves the quality of life of

individuals and their families who are facing problems associated with life-
threatening illness, by preventing or relieving suffering through early
identification and treatment of pain and other problems, whether physical,
psychosocial or spiritual (World Health Organization, 2017). People suffering
from life-limiting illnesses requiring palliative care are referred to as people
receiving palliative care in this paper.

Spiritual well-being is regarded as the health of the person’s spiritual

dimension, ranging from spiritual distress to spiritual wellness (Selman et al.,
2011). People receiving palliative care often experience spiritual distress
(Chan et al., 2014; Winkelman et al., 2011), which is defined as the impaired
ability to experience and integrate meaning and purpose in life (Meraviglia et
al., 2008). It may be manifested as fear, nervousness, anxiety, hopelessness,
suicidal thought, depression or despair (Edwards et al., 2010). On the other
hand, those with higher spiritual well-being (i.e., faith, meaning, peace and
purpose in life) exhibit fewer symptoms of anxiety and depression (Johnson et
al., 2011; Nelson et al., 2002).

Milligan (2011) suggests that life review exercise could address the
spiritual needs of individuals. Life review refers to a progressive recall of past
memories in attempts to find meaning in life and to achieve emotional
resolution (Jenko et al., 2007). This process involves the narration of life
experiences from the earliest memory of an individual to the present. Both
unresolved conflicts and pleasurable experiences are recalled in life reviews,
and these life experiences are evaluated and reframed to help an individual
find meaning in life (Binder et al., 2009; Korte et al., 2012).

According to Erikson’s lifespan developmental psychology theory,

towards the end of life individuals may face a psychological crisis where ego
and integrity clash with despair. These people must obtain a sense of
satisfaction and achievement at this stage to feel a life well-lived. Life review
is therefore regarded as a naturally occurring and universal process that
allows older people to recall their past experiences and unresolved conflicts in
a non-structured manner (Babb de Ramon,1983). Lewis and Butler (1974)
developed a structured life review intervention to help the elderly re-examine
and reconstruct the meaning of their lives. Conventional life review
interventions are often conducted by psychologists through one-to-one
interviews an hour a week for eight to 10 weeks. The life review process is
usually prompted by the awareness of an impending death (Kwan et al.,
2017). Thus, this intervention is expected to help people receiving palliative
 i To evaluate the effectiveness of short term life review intervention in
enhancing spiritual well-being and lowering anxiety and depression in
develop a constructive reappraisal of past events tend to have lower levels of people receiving palliative care; and
anxiety and depression (Korte et al., 2012). This is in line with the Conflict
Reintegration Model (Black and Haight, 1992), which posits that life review
can help individuals reorganise their perceptions towards life and restore ii To evaluate the delivery of interventions, and subjects’ parti-cipation and
effective coping. In this model, people are perceived as energy fields with acceptance of short term life review intervention.
organised patterns that interact with the environment. These organised
patterns would be disturbed and even disorganised when interactions with the
To achieve these objectives, a sequential mixed methods approach was
environment is increased. Life events, such as having a terminal illness, is one
employed, and a randomised control trial used to test the effectiveness of the
of the examples of such interactions. Individuals must recall their unresolved
short term life review intervention. Process evaluation by observation log and
conflicts and reorganise their lives to restore an organised pattern effectively.
semi-structured
If no reorganisation takes place, these individuals would not be able to cope
with their present situations effectively. According to Black and Haight
(1992), life review is a method to help the individuals reorganise perceptions
of life events and restore an organised pattern, which indicates effective
coping. This model also suggests that nurses can facilitate the life review
process.

The process of reorganisation involves three components, re-

contextualising, forgiving and reclaiming unlived life (Jenko et al., 2007). Re-
contextualising refers to re-analysing and reframing previous failures in a
positive manner. Forgiving involves redirecting previous anger and
resentment towards positive thoughts and attitudes. Reclaiming an unlived
life involves spending time to compensate for something that has not been
done before (Jenko et al., 2007).

Palliative research often faces a variety of recurring problems, which

include poor physical condition, high drop-out rates and missing data due to
subjects’ deteriorating condition and fatigue (Chan et al., 2012; Fitzsimons
and Strachan, 2012). Our team has therefore conducted a systematic review
on life review inter-ventions for people receiving palliative care (Kwan et al.,
2017), and found that only seven relevant studies were conducted by two
research teams, Ando and Steinhauser. Among the seven studies, only two
were randomised controlled trials. One on conventional life review
interventions did not report a statistically significant improvement in
outcomes (Steinhauser et al., 2008) while the other reported a promising
outcome of a short term life review intervention on Japanese people with late-
stage cancer (Ando et al., 2010). However, the participants and assessors were
not blinded in Ando et al’s study, and their intervention was delivered by a
psychologist.

Despite the usefulness of life review in palliative care (Trueman and

Parker, 2006), nurses have only limited experience using this intervention.
Moreover, conventional life review programmes take six to ten weeks to
complete, often beyond the life expectancy and physical tolerance of
terminally ill individuals. It is also difficult for nurses to apply it in the busy
clinical situation.

2. Aims & objectives

The aim of this interventional study is to evaluate the effectiveness of

short term life review intervention and its implementation in palliative care
settings. The objectives of the study are as follows:
136 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143

Process evaluation is a research method that assesses the integrity of an

intervention and identifies why and how it works (Chan, 2008). The process
interview was used to examine the delivery of the intervention and subjects’ involves documenting how the intervention was executed (McCarthy et al.,
participation. 2015) and participants’ involvement (Chan, 2008), as well as interviewing the
participants on their views of the intervention experience (Chan, 2008). This
data is valuable in guiding the implementation of interventions in clinical
settings.
3. Method

In this study, process evaluation included a review of the observational

3.1. Outcome evaluation
log sheet and individual interview. The intervener observed and recorded the
participants’ levels of involvement and response to the life review questions
through the use of a self-developed log sheet, and a score was assigned for
A randomised control trial was employed to evaluate outcome variables this parameter based on a set of pre-determined criteria as presented in
with the following hypotheses:

i People receiving palliative care receiving the short term life review
intervention would have higher levels of spiritual well-being than those
without such an intervention;

ii People receiving palliative care receiving the short term life review
intervention would have lower levels of anxiety and depression than those
without such an intervention.

In this study, people receiving palliative care from three publicly funded
regional hospitals in Hong Kong were recruited from the hospital wards, day
hospices and outreach home services provided by a palliative care team. The
inclusion criteria for recruitment were (1) adult aged 18 or above, (2) able to
com-municate in Chinese and (3) a life expectancy of not less than one month
estimated by a primary doctor. Those cognitively impaired, eg suffering from
dementia or delirium, or too ill to complete the intervention, were excluded.
An independent statistician per-formed the randomisation process. Random
numbers for the intervention or control group were computer-generated in a
block size of six, and then placed in sealed envelopes. A participant was
assigned to the treatment or control group according to the sequentially
numbered opaque sealed envelopes containing assignment information.
Random assignment to either group occurred after the baseline measurements
had been taken. Both the participants and the person collecting data were
blinded to the group allocation. Block randomization by day was employed
for group allocation among participants attending day care centres.

In order to minimise the difference in attention between the groups, a

different set of questions that serves as placebo was offered to the control
group as an alternative. All participants were informed that they would be
given, randomly, either of the two sets of interview questions. The intervener
administered the Set A questions, the life review guiding questions, to the
intervention group. The same intervener also approached the control group
and conducted Set B questions (placebo questions) on symptoms and social
issues. In fact, Set B questions were the stuff of normal conversation between
primary nurses and people receiving palliative care. In this way, the placebo
effect of additional attention by the researcher would possibly be ruled out by
offering the usual care attention (Polit and Beck, 2012).

3.2. Process evaluation


Appendix 1 in Supplementary material. The intervener also kept a written
note of the participants’ special presentations during the intervention as
supplementary data. Semi-structured inter-views of participants were
conducted by an independent assessor to elicit the participants’ perceptions
and feelings towards the whole exercise. The individual interviews were
audio-recorded and transcribed. The qualitative content analysis method was
employed to analyse narrative data.
assignment performed by the statistician. The first data collector then
informed the intervener on the results of group allocation. The intervener
administered Set A (short term life review) questions to participants in the
intervention group, and the Set B (placebo social conversations) questions
were given to those in the control group. The intervener, being one of the
investigators of this study, was an experienced palliative care nurse
consultant. She was the only intervener in this study, thus every intervention
participant would receive the life review intervention of the same quality.
After one week, the second data collector administered the same sets of
questionnaires

3.3. Sample size

Using the power analysis software PASS 13.0 (NCSS, Kaysville, USA), a
sample size of 45 participants per group would give the study 80% power to
detect a moderate effect size of 0.6 on the outcomes at a 5% level of
significance. An attrition rate of 12%, similar to that of Ando et al. (2010),
was assumed, so that at least 51 ( = 45/0.88) participants per group had to be
recruited.

3.4. The intervention

The short term life review intervention consisted of two communication

sessions with the participants, each lasting approximately 45 min. An interval
of a week between the first and second sessions was allowed for the
intervention group. In the first session, participants were asked the eight life
review guiding questions (Appendix 2 in Supplementary material) to explore
their life stories. Answers to each question were noted down by the
intervener, who edited the content into a personalised life review booklet with
relevant pictures and photographs inserted to enrich the presentation. A week
later, in the second session, the intervener and participant looked at the
booklet and went through the contents together, and it was then presented to
the participant for retention.

The eight life review questions (Appendix 2 in Supplementary material),

translated from English to Chinese were modified and culturally adapted from
Ando et al. (2010). Expert opinions and face validity values were sought from
five nurse consultants in palliative care, one nursing professor, an expert in
palliative care, and one clinical psychologist serving palliative care units. All
questions yielded good face validity. The questions were pilot tested in five
people receiving palliative care without any difficulties or concerns.

3.5. Data collection

People who received palliative care service during the study period and
who met the inclusion criteria were referred to the research team by their
primary doctors or nurses for subject recruitment purposes. The first data
collector would introduce the study to the potential participants in detail,
invite them to join the study, obtain the informed consent from them. After
informed consent was obtained, the first data collector administered the
questionnaires to the participants (MQOL-HK & HADS) for the collection of
baseline data. The data collector then allocated participants to the respective
groups according to the sequentially numbered opaque sealed envelope
 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143 137

(MQOL-HK & HADS) to participants in both groups. The second data
collector was blinded to the group allocation. She was solely responsible for
collecting post-intervention data. After completion of the post-intervention
questionnaires (MQOL-Hk & HADS), a third data collector conducted semi-
structured interviews with participants in the intervention group.
Anxiety and depression levels were measured by the Hospital Anxiety and
Depression Scale (HADS) (Holtom and Barraclough, 2000; Lam et al., 2009,
1995). HADS is a 14-item instrument using a four-point rating scale. HADS
has been translated into Chinese and validated among Chinese people in Hong
Kong (Lam et al.,1995). The sensitivity was 80%, the specificity was 90%, the
overall misclassifi-cation rate (OMR) was 12%, the positive predictive value
was 67% and the negative predictive value was 95%. (Lam et al., 1995).

Well-validated Chinese versions of these two sets of ques-tionnaires are

available. These questions were administered by the data collectors. It took
3.6. Blinding 15–20 minutes for participants to complete the two sets of questionnaires.

Apart from randomisation, other strategies were used to enhance the

rigour of the quantitative study. Double-blinding, where neither the
participants nor data collectors were aware of the outcome of group
allocation, was employed. This study involved both hospital-ised and
community-dwelling participants. They were assigned randomly to the
intervention or control group, and were blinded to the group assignment.
Hospitalised participants mostly stayed in hospital beds and were therefore
unlikely to be able to communicate with the other participants on the
outcomes of group allocation. Moreover, there were only one to two
participants recruited from each wardperweek. Participantsattendingtheday
carecentres were assigned to the intervention or control group according to
the day of the week when they attend the centre. Those attending on Mondays
were assigned to the intervention group, while those attending on Fridays
were assigned to the control group. Individuals attending on both Mondays
and Fridays were excluded from the study to avoid data contamination.
Onlythe intervenerknew this block assignment pattern. For people receiving
palliative care at home, data collection and
shorttermlifereviewdiscussionwere conductedin theirhomes. Therefore,
community dwelling participants in one group were unable to communicate
with those in the other group. Thus, contamination of data was unlikely.

The second data collector was also blinded to the group allocation of
participants. The data collectors were responsible for either pre-intervention
or post-intervention data collection only. They did not follow up on the same
participants again.

3.7. Outcome measures

The outcomes of the intervention were evaluated according to how much

spiritual well-being, anxiety and depression levels had improved. In this
study, spiritual well-being was measured by the spiritual subscale of the
McQill Quality of Life Index—Hong Kong version (MQOL-HK) (Cohen et
al., 1995; Lo et al., 2001). There are 17 items in MQOL-HK, of which five
belong to the spiritual domain with scores ranging from 0 to 10. MQOL was
selected because it is a cross-culturally validated tool in palliative care
(Selman et al., 2011). Moreover, the Hong Kong version of MQOL (MQOL-
HK) has been validated (Lo et al., 2001). The construct validity of this
instrument is good, as evidenced by a significant correlation between the
MQOL-HK total scores and the single item score (r = 0.5, P = 0.001) (Lo et
al., 2001). The convergent validity of the questionnaire is also acceptable, as
evidenced by the significant correlation between the MQOL-HK total score
and Spitzer’s Quality of Life Index total score (r = 0.40, P = 0.004) (Lo et al.,
2001).
 mean score of 56.6 (SD: 12.49). About half of the participants (n = 55) scored
50, and half again (n = 54) 60. The range of scores was 0–100 - 0=dead, 100
3.8. Statistical analysis = full function with no signs of illness, 60 = reduced ambulation, occasionally
needing assistance, 50 = able only to sit or lie, unable to do any work and
needing considerable assistance (Anderson et al., 1996). In fact, participants
recruited from the palliative care wards were of relatively poor health status,
Data was summarised and presented using appropriate descriptive
while those recruited from the day-care centre were of better functional status.
statistics. The outcome variables were analysed on the basis of the intention-
The participants’
to-treat principle. The generalised estimating equation (GEE) method was
used to compare the differential change in each of the outcome variables
across time (T1 and T2) between the two groups, with adjustment for any
baseline difference in the underlying outcome variable. All statistical analyses
were performed using IBM SPSS 24.0 (IBM Corp., Armonk, NY) and all
statistical tests involved were two-sided, with the level of significance set at
0.05.

3.9. Ethical approvals

Written consent was obtained after introduction of the research.

Anonymity and voluntary participation were strictly adhered to. Strong
emotions and upset feelings among partic-ipants, when induced by the
discussion of their life events, were handled by the nurse intervener who was
an experienced palliative care nurse. The intervener worked closely with the
doctors and nurses in the palliative care team. She would report any events or
problems arising from the intervention and would seek support from the team
if necessary.

Ethical approval was obtained from the Joint CUHK-NTEC Clinical

Research Ethics Committee and individual review boards of the participating
hospitals where participants were to be recruited. Approval for adapting the
short term life review intervention and the assessment tools was also
obtained.

4. Results

Data collection lasted for one year from February 2016 to January 2017.
A total of 167 subjects were referred to join the study by primary doctors or
nurses, and 109 subjects were successfully recruited. The intervention group
was reduced by five after the first session interview because of a death,
physical deterioration in another and three withdrawals. Fifteen participants
from the control group dropped out because of death (n = 2), physical
deterioration (n = 9) and withdrawal (n = 4). The reason for participants ’
withdrawal was feelings of tiredness completing the questionnaires. The
recruitment flow of the study is shown in Fig. 1. Eventually, 89 participants
completed the study, and the response rate was 81.7%.

Among the 109 participants, the majority (71.6%) were recruited from
hospital care facilities, with 28.4% from home and day care facilities. There
were slightly more males (56.9% [n = 62]) than females (43.1% [n = 47]).
However, the differences were not signifi-cant (p = 0.068) to create a bias
towards male presentation. Almost 60% of the participants were 60 years old,
and the mean age was 64.4 (SD: 11.98), ranging from 28 to 89. The majority
were married 69.7% (n = 76). Less than half (46.8%) had achieved a
secondary or higher level of education. Nearly half (48%) had no religion.
Metastatic cancer was the dominant diagnosis (94.5%), with only six
participants diagnosed with other diseases, including chronic renal failure and
motor neuron disease. As a routine assessment for all people receiving
palliative care in the setting, the Palliative Performance Scale (PPS) showed a
138 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143
Fig. 1. Recruitment flow.
demographic data was summarised and analysed by descriptive statistics, and
appears in Table 1.
In the current study, the Cronbach’s alpha of the MQOL-HK spiritual
subscale was 0.805, while that of the HADS was 0.822. This represents a high
level of internal consistency in both tools.
The demographic data of the intervention and control groups was
compared by the Pearson chi-square test, but no significant statistical
difference was observed between groups. Independent sample t-tests were
used to compare and test the baseline measurements of the HADS and
MQOL-HK for differences between the groups. Again no significant
statistical difference was observed in the MQOL-HK domains and HADS.
4.1. Baseline comparisons
Demographic data of the intervention and control groups were compared
using the Pearson chi-square test. Table 2 summarizes the results. No
significant statistical difference was observed in the demographic
characteristics between groups.
Independent samples t-test was used to compare the differ-ences in the
baseline measurements of the HADS and MQOL-HK between the two
groups. The mean values of the measurements were compared to determine
whether there are significant differences in the scores between the two groups
at baseline. Table 3 presents the results of the independent samples t-test. The
results confirmed that no significant statistical differences exist in the baseline
measurements between the intervention and the control groups in HADS
scores and the score for the spiritual domain of MQOL-HK.
For MQOL-HK, each item was assigned a score ranging from 0 to
10. However, some items would utilise a reverse scale. For ease of
interpretation, these items were reversely scored. Therefore, a higher score for
every item in MQOL-HK indicates a better outcome. For HADS, the anxiety
sub-scale ratings range from 0 to 21, and the depression sub-scale ratings also
range from 0 to 21. A higher score indicates a worse psychological outcome.
4.2. Spiritual well-being
There was an increase in the overall mean score of the spiritual domain
after the short term life review intervention in that group [from 6.29 (SD
1.963) to 6.91 (SD 1.775). Table 4 presents the mean scores at the two time
points, baseline (T1) and one week later (T2), of both groups. The control
group recorded a decrease in the overall mean score in the spiritual domain,
from 6.22 (SD 2.000) to 5.93 (SD 2.311).
4.3. Anxiety and depression

A higher HADS score represented a much worse anxiety and depression

condition. In this study, both groups showed a decrease in the overall anxiety
and depression scores after one week. The intervention group had a reduction
in both anxiety and depression sub-sets, whereas the control group reported a
reduction in the depression sub-set and an increase in the anxiety sub-set.

Generalised Estimating Equations (GEE) were used to compare the

outcomes across time between the two groups.

Table 5 summarises the statistical findings of the outcome measurements.

The p values of the group by time interaction-term in the GEE models for the
spiritual domain were p = 0.001 and in HADS p = 0.536. Only the p values
for the differences between groups across time in the spiritual domain of the
MQOL-HK [B (Group*Time) = 0.28, 95% CI: 0.36, 1.44, p = 0.001]
achieved a
 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143 139

60 18 9 27

Table 1 70 10 7 17

80 1 8 9
Demographic characteristics.
90 0 1 1

Intervention Control Total

(54) (55) (109)

Gender Male 26 36 62

Female 28 19 47

Marital status Single 8 4 12

Married 33 43 76

Widowed 8 4 12

Divorced 5 4 9

Age range 21–30 1 1 2

41–50 2 7 9

51–60 16 17 33

61–70 18 14 32

71–80 13 8 21

81–90 4 8 12

Education Non-formal 8 7 15

Primary 17 26 43

Secondary 24 21 45

College or above 5 1 6

Religion None 25 27 52

Christian 15 14 29

Buddhist 6 6 12

Traditional Chinese 7 8 15

Taoist 1 0 1

Site Hospital 41 37 78

Day centre 1 6 7

Clinic 1 1 2

Home 11 11 22

Primary End stage organ failure 2 4 6

diagnosis Metastatic cancer of the 19 16 35

lung

Metastatic cancer of the 13 16 29

gastrointestinal tract

Metastatic cancer of the 5 7 12

reproductive organs

Metastatic cancer of 15 12 27

other organs

PPS 30 1 1 2

40 5 11 16

50 19 18 37
 PPS 0.742 1 0.389

Table 2 ( 50, 60)

Comparison of the baseline characteristics of the intervention and the control groups using the
Pearson chi-square test.

Value df Asymptotic

Significance Table 3

(2-sided)
Independent samples t-test comparing the baseline measurements of the two groups.
Gender 3.327 1 0.068

(Male, Female)

Age 1.339 2 0.512

t df Sig. (2-tailed)
( 60, 60-70, 70)
HAD 1.534 107 0.128
Education level 2.055 1 0.152
HAD—anxiety 1.692 107 0.094
(Primary education or below, secondary
HAD—depression 0.937 107 0.361
education or above)
MQOL-HK
Marital status 3.762 1 0.052
Spiritual domain
(single/widowed/divorced, married)
Meaning and purpose 0.018 107 0.986
Religion 0.085 1 0.770
Life goals achieved 0.825 107 0.411
(No religion, have a religion) Feel that life is worthwhile 0.150 107 0.881
Diagnosis 0.001 1 0.974 Feel good about myself 0.817 107 0.416

(not diagnosed with cancer, diagnosed with Feel burdened 0.044 107 0.965

cancer)

As for the level of involvement, over 90% of the participants were highly
attentive and exhibited interest and high levels of

statistical significance of less than 0.05, with a Cohen’s d effect size of 0.65.

Subsequently, the components of each domain were studied. The

intervention group exhibited greater improvement in all compo-nents of the
spiritual domain than the control group, as indicated by the positive
coefficients of the Group by Time interaction-term in the GEE models. The
improvement in the components of ‘life goals achieved’ [B (Group*Time) =
1.30, 95% CI: 0.48, 2.10, p = 0.002] and ‘feeling good about oneself’ [B
(Group*Time) = 1.34, 95% CI:0.35, 2.32, p = 0.008] reached statistical
significance.

The coefficients of the HADS showed negative values because scaling

was in the opposite direction to that of MQOL-HK variables. A negative
coefficient value represented greater improvement in the intervention group
than in the control group. Therefore, the intervention group exhibited
considerable improvement in anxi-ety and depression levels in the HADS [B
(Group*Time) = 0.62, 95% CI: 2.59, 1.35, p = 0.536], although not reaching
statistical significance.

4.4. Level of involvement and level of response of the intervention group

participation during the life review discussion. Forty-four partic-ipants
expressed interest in the personal life review album. Ten participants did not
want to have one made because they were either single or widowed without
children, and claimed they did not have anyone to pass the album on to. These
ten participants constituted the 18.5% under ‘low involvement or interest in
producing a life review booklet’.

As far as the level of response to the life review questions was concerned,
over 65% of the participants had high response levels to questions 1–3, with a
mean score >3. A moderate-to-high response level means they responded
spontaneously after they were asked to share their stories or disclose
information with or without some probing. For questions 4 and 5, the high
level response rates were 59.3% and 50%, respectively. A reverse pattern was
observed in questions 6, 7 and 8, to which more than half of these participants
exhibited a partial-to-low response. The mean score was <2. Questions 6 and
7 elicited a particularly low level of response, over 70% claiming they had
nothing to share in these respects. Appendix 3 in Supplementary material lists
the percentage distribution and the mean score of involvement and response
levels to the life review questions.

4.5. Semi-structured interviews

Although there were 54 participants in the intervention group, only 12

participants were successfully interviewed. Those refusing to join the
interview were either physically too tired or just did not
140 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143

Table 4 that the life review process enlightened them by allowing them to think
differently.
Mean scores from the MQOL-HK and HADS at T1 and T2 for intervention and control groups.

A very important element of the short term life review intervention was
the intervener who conducted the life review interview with the participants,
who evaluated the intervener positively. Participants said they found
Intervention group Control group intervener amiable, exhibiting a caring attitude and listening attentively to
their stories, and thereby indicating that the intervener had demon-strated
good communication skills during the life review inter-views.
Mean SD Mean SD

HAD T1 11.83 6.68 12.38 5.82

T2 10.73 6.91 12.18 6.44

Lastly, these participants were all delighted to receive booklets. They said
HAD—anxiety T1 2.67 3.12 3.40 3.12
they would keep them carefully and read them at times for further review.
T2 2.42 3.29 3.55 3.69 Some participants also stated that they planned to share their booklets with
their families, children, church colleagues and friends. Some participants also
HAD—depression T1 9.17 4.52 8.98 4.87
said they would like to pass down their booklets to their children as a
T2 8.31 5.01 8.63 4.94 memorial.

MQOL-HK

Spiritual domain 5. Discussion

Meaning and purpose T1 5.45 3.13 5.68 2.84

T2 6.10 2.77 5.78 3.15

5.1. Effect on spiritual well-being and anxiety and depression
Life goals achieved T1 6.33 2.30 5.98 2.83

T2 7.16 2.10 5.50 2.89

Feeling that life is worthwhile T1 5.43 2.65 5.33 2.97

T2 6.24 2.92 5.53 3.11

Feeling good about oneself T1 6.71 2.42 6.30 2.90

T2 7.45 1.92 5.70 3.03

Feeling burdened T1 7.53 3.12 7.83 3.28

T2 7.61 3.24 7.13 3.26

old stories, and thus gained a new perspective on their life experiences and
Score range: HADS (0–42); 0=better, high marks = worse. MQOL-HK (0–10); 0 = worse, 10 = the people surrounding them. They gained a wider and in-depth understanding
better.
of the people they encountered and things that happened in the past. They had
more insights into their personality and the way they treated others.
Moreover, they stated
want to be recorded. The interviews were audio-recorded and transcribed into
the text of the original language, Chinese. A qualitative content analysis
method was used to analyse the narrative data. Content analysis of all 12
interviews revealed 5 categories and 12 sub-categories; Table 6 presents an
overview.

Positive and negative feelings arose during the process of reviewing life.
Short term life review intervention was reported as a comfortable and relaxing
experience. The participants expressed feelings of happiness, comfort and
relaxation. They were free to ventilate their feelings and share their stories.
They treasured the opportunity to talk about their past experiences. However,
negative emotions also arose. Two participants expressed a sense of sadness
when bad experiences in the past were recalled, such as the moment they
received the bad news of a cancer diagnosis.

The participants indicated that by recalling their past they gained the
opportunity to recognise the love and care of their families and friends, and
learned to treasure their relationships more. For these participants, the life
review and reflection had helped them transform some hatred feelings into
gratitude. A sense of thankfulness and joy arose. They had a new look on the

The findings of this study support the first hypothesis, that people
receiving palliative care receiving the short term life review intervention
would have enhanced spiritual well-being compared with those without such
intervention. However, the second hypothesis, concerned with lowered
anxiety and depression levels, was rejected.
and develop positive thoughts about themselves. The evaluation of “life goals
achieved” and “feeling good about oneself” was considerably more
straightfor-ward and precise. Many individuals referred to their life goals
achievement as having brought up children, earned a living for the family or
owned an apartment. They rated highly on “feeling good about oneself” when
they said that they had been good to others and accepted imperfections.

The results of the current study are similar to those of previous empirical
studies conducted in Japan (Ando et al., 2010, 2008; Sakaguchi and Okamura,
2015), in which a significantly better spiritual well-being performance was
identified in the interven-tion group than in the control group. In particular, a On the other hand, “Meaning and purpose” and “feeling that life is
significantly improved performance was obtained in the intervention group on worthwhile” were perceived as more abstract and substantially difficult to
the “life goals achieved” and “feeling good about oneself” components. This comprehend. Only a few participants said they discovered that they had lived
result may indicate that after the short term life review intervention a meaningful and worthy life but
individuals were considerably more able to identify their achievements in life

Table 5

Generalised estimating equation (GEE) models for the comparison of primary and secondary outcomes across time between the control and intervention groups.

Outcomes Regression coefficients of the GEE models

Group Time Group*Time

B (95% CI) P B (95% CI) p B (95% CI) p

HAD 1.82 ( 4.13, 0.49) 0.122 0.48 ( 1.97, 1.01) 0.529 0.62 ( 2.59, 1.35) 0.536

HAD—anxiety 0.99 ( 2.12, 0.15) 0.088 0.06 ( 0.99, 1.12) 0.913 0.28 ( 1.63, 1.06) 0.681

HAD—depression 0.83 (-2.56, 0.89) 0.344 0.55 ( 1.5, 0.38) 0.249 0.31 (-1.65, 1.02) 0.646

MQOL-HK

Spiritual domain

Meaningful and purposeful 0.01 ( 1.13, 1.11) 0.985 0.20 ( 0.61, 1.0) 0.633 0.47 ( 0.63, 1.57) 0.404

Life goals achieved 0.41 ( 0.55, 1.37) 0.404 0.46 ( 1.07, 0.14) 0.135 1.30 (0.48, 2.10) 0.002

Feel that life is worthwhile 0.08 ( 0.96, 1.12) 0.880 0.19 ( 0.55, 0.93) 0.608 0.62 ( 0.35, 1.60) 0.209

Feel good about myself 0.41 ( 0.57, 1.40) 0.409 0.61 ( 1.44, 0.22) 0.148 1.34 (0.35, 2.32) 0.008

Feel burdened 0.03 ( 1.23, 1.17) 0.964 0.55 ( 1.58, 0.48) 0.292 0.65 ( 0.67, 1.97) 0.334

Only the model estimates of the regression coefficients of the dummy variables for the group [Group: 0= Control (reference); 1= Intervention], time point [Time: 0=pretest (reference); 1= posttest] and
the time points and group interaction terms (Group*Time) are shown for the GEE models.
 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143 141

Table 6

Overview of categories and sub-categories.

Categories Sub-categories Sample quotes

During the life review interview

Positive feelings Comfortable and relaxing

experience

Free to ventilate

Negative feelings Feeling sad when recalling bad

experiences

Changes brought about by the intervention

Increase in joy Happier

Treasure more

More thankful

New perspective Wider and in-depth

understanding

Enlightened

Know more about myself

The intervener

Caring attitude Attentive

Compassionate

Gave time
 ‘My family members are so supportive of me . . . . and . . . . others . . . like church friends are so caring towards me . . . so it is
worth it, worth it for me to treasure [them] more.’ [08-5]
‘I felt comfortable . . . . I said what I could, there was no
difficulty. Not difficult!’ [05-2, 3]
‘It is helpful. I feel more thankful because my old stories were revisited . . . . I had lots of hatred in the past. Now, I am filled with
more gratitude.’ [11-1, 11-10]
‘Quite interesting. The questions were quite interesting. I
haven’t thought about them before.’ [06-2]

‘My mind was more open and inclusive . . . I feel that I have a wider view than before. I was stingy and narrow-minded. Now I
‘Very relaxed . . . because there was someone willing to listen have a wider view and more cheerful than before.’ [10-7]
to me. I am not a talkative person. I can keep silent for a
whole day.’ [12-12]
‘I am thankful to realise that I did not see and treat the people and things around me in a deeper and clearer way in the past.’ [11-2]
‘I could say as much as I want.’ [11-14]

‘Through this programme and by answering the questions, I found that, I mean, I realised how I see things and problems. I think I
‘It allowed me to pour out everything that was in my heart.’ [10-
3] can be more open-minded and happier later on . . . . Because, having joined this programme, I became enlightened.’ [04-4]

‘It gave me an opportunity to talk about myself and ventilate.’

[10-12] ‘All of a sudden, like a lamp switched on, “ding” . . . that is, the things I treated very seriously before, I have a different view of
now.’ [07-25]

‘When I knew about I had cancer . . . that is, when I recalled

that part [of life experience] . . . I was not, of course, feeling ‘I found that in the “Inner melody” [life review booklet], I realised that everything of me was around my daughter.’ [07-26]
happy.’ [04-3]

‘I felt happier afterwards.’ [03-11] ‘Because she was really caring. She wanted to listen to what you say. Other people wouldn’t. If they do not want to listen, they will
feel bored.’ [12-12]

‘I haven’t thought of having such a session to review past

experiences. Now, having this opportunity, I found nothing ‘I see great love; you people approached me amiably.’ [12-14] ‘She cares
was a big deal . . . and it gave you the kind of . . . more about me. She made time to [talk to me].’ [08-13]
happiness.’ [07-28,29]

This study found that the majority of the participants were considerably
involved in the short term life review intervention, in
it was hard to find meaning when currently suffering from a serious illness.
The majority of the subjects in this study were recruited in wards, and so
represented those suffering from serious levels of illness that required
hospitalisation.

On anxiety and depression, the intervention and control groups

demonstrated an improving trend, albeit statistically insignificant, compared
with the baseline and between groups. The baseline HADS scores were 11.8
and 12.4 for the intervention and control group, respectively. O’Connoret al
(2010) explained that the cut-offscore for the combined anxiety and
depression totals was 19. Given that the participants in the current study did
not exhibit severe levels of anxiety and depression, a large enough
improvement might have been difficult to achieve after the implementation of
short term life review. Such scenarios may also reflect that the palliative care
team in the study setting had generally provided adequate levels and amounts
of emotional support to people in their usual care.

The qualitative data from the semi-structured interviews supports the

findings from the quantitative section. These participants exhibited positive
changes in mood and spiritual well-being. The short term life review
intervention had an effect on the spiritual aspect by enlightening and
expanding individuals’ perspectives. These results were brought about by the
re-evaluation of positive or negative life events, as well as the development of
new understandings and perspectives of these events. Thus, the overall
findings may suggest that short term life review had relatively benefited
individuals in the emotional and spiritual well-being areas.

5.2. Life review as a vehicle to achieve life developmental

their attention, interest and participation in the life review interview. They
actively discussed their life experiences, sponta-neously disclosed their
stories, and described details with minimal probing and encouragement by the
intervener. The recalling and telling of life stories occurred naturally during
the interviews. This result echoes Erikson’s lifespan developmental stages - at
the final stage of life, a person needs to restore integrity by acquiring a sense
of satisfaction with a life well-lived (McLeod, 2008; So et al., 2013). The
participants in the present study evidently exhibited good engagement in
recollecting life accomplishments and satisfaction with the lives they had
lived. This result is reflected in the quantitative finding that the item on “life
goals achieved” recorded significant improvements (p < 0.05). Thus, the short
term life review intervention appears to assist individuals to achieve the goal
of integrity restoration in the final lifespan developmental stage.

Such findings are in line with the literature, in that life review can help
people with advanced diseases to accept their deaths and enhance their
spiritual well-being (Ando et al., 2010; Xiao et al., 2012). Subjects generally
reported a feeling of emotional relief, improved perceptions of meaning in life
and were able to leave a legacy.

5.3. Life review reintegrates conflict and restores harmony

Many people receiving palliative care enjoyed talking about their past
achievements at work, special talents and their children and grandchildren.
Several participants shed tears when they recalled the hardships they had
experienced in the past, particularly how their mothers had loved them and
worked extremely hard to bring them up. Although negative emotions were
aroused, the improvement in HADS and spiritual well-being
142 C.W.M. Kwan et al. / International Journal of Nursing Studies 91 (2019) 134–143

in hospital and community as part of their routine nursing care. It would also
be worthwhile to investigate the responses to short term life review of the
scores may suggest that the recollection of bitter memories does not families of the participants.
necessarily harm the individuals’ emotions.

Furthermore, in the Conflict Reintegration Model (Black and Haight,

1992) on which the current study is based, the nurse as a facilitator assists a
person to “reintegrate” and “reorganise” conflicts to obtain an effective life
pattern. Therefore, when the individuals revisit any happy or unhappy events
that naturally occur (Babb de Ramon, 1983), they are supported by the 5.6. Implications for clinical application
intervener and are encouraged to evaluate the context in different perspec-
tives. Having a re-analysis of the events or a person, they would be able to
gain a deeper understanding and a wider perspective that would result in more This short term life review intervention, delivered by nurses, is a concise
positive actions, such as forgiving a person or themselves, and spending more and structured programme that does not exhaust the energy and time of
time with families. Thus, the individuals can be directed towards a positive participants, including life-limited people
meaning, recon-struction and forgiving. The mechanism of life review
involves the revival of positive life stories and re-evaluation of bitterness in
life in a constructive manner.

Nevertheless, some individuals may appear to be reluctant to recall past

events. Indeed, there were several potential participants who refused to join
the study because they did not want to recall life experience in the past.
Therefore, respecting individual’s willingness to receive life review
intervention is vitally important during subject recruitment.

5.4. Limitations

This study has several limitations. First, it was unable to include all
participants who had received short term life review interven-tion in the semi-
structured interviews because they refused to join. These potential
participants may provide information additional to this research. Second, the
study missed certain individuals who had refused to participate for unknown
reasons. Third, it failed to analyse the long-term effects of the intervention. In
particular, the effects on the family of the participants who had received the
intervention were not assessed. Lastly, only one nurse intervener was
employed in this research. Despite the availability of a scoring guide
describing the level of involvement and response during the intervention, it is
possible that the intervener would exercise a certain level of subjectivity in
such ratings. The implementation of the intervention by other nurses in a real-
life day-to-day clinical setting has yet to be studied.

5.5. Implications for future research

This study demonstrates a breakthrough in the difficulties, such as high

dropout rates, in conducting palliative care research. It shows the feasibility of
empirically evaluating a short form intervention for such individuals with a
reasonable attrition rate. The merit of using a mixed methods approach to
measure the outcomes as well as the process produced a more comprehensive
picture of the intervention’s effectiveness and clinical usefulness. It would
certainly be worthwhile to evaluate the real-life clinical implementations and
long-term effects of the intervention in future research. Any such study
should be longitudinal and considerably larger in scale, with a substantially
longer period of implementation to assess the effectiveness of the
intervention. It could be implemented and evaluated by more front-line nurses
receiving palliative care. It serves as an option to address the spiritual needs
of such people. The use of a short term life review, particularly the positive
reinforcement of their achievements and contributions, may enhance the
spiritual well-being of individuals. Given that this process is a short version
and nurses have readier access to people receiving palliative care, it is highly
applicable to clinical settings, particularly by specialty nurses experienced in
palliative care.
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Analisis Jurnal 1

Judul : The effectiveness of a nurse-led short term life review intervention in enhancing the spiritual and
psychological well-being of people receiving palliative care: A mixed method study

(Efektivitas intervensi tinjauan hidup jangka pendek yang dipimpin perawat , meningkatkan kesejahteraan
spiritual dan psikologis orang menerima perawatan paliatif: Studi metode campuran)

Kata kunci : Anxiety, Depression, Life review, Palliative care, Spiritual well-being
Pengarang : Cecilia W.M. Kwan, Carmen W.H. Chan, Kai Chow Choi
Tanggal publikasi : 12 Desember 2018
Kesimpulan :
Penelitian ini bertujuan untuk membandingkan keefektifan dari intervensi kesejahteraan spiritual dan
psikologis pada orang yang menerima perawatan paliatif dan membandingkannya pada yang tidak
melakukannya.

Hasilnya, sebanyak 109 peserta direkrut (54 di kelompok intervensi, 55 di kelompok kontrol).
Kelompok intervensi menunjukkan peningkatan kesejahteraan spiritual yang jauh lebih besar daripada
kelompok kontrol, dengan ukuran efek-d Cohen sebesar 0,65. Meskipun ada peningkatan pada tingkat
kecemasan dan depresi pada kelompok intervensi, signifikansi statistik dalam perbandingan antar
kelompok tidak tercapai. Evaluasi proses menemukan bahwa sebagian besar peserta sangat terlibat
(92,6%), tertarik (77,8%) dan berpartisipasi dalam intervensi (79,6%). Para peserta menggambarkan proses
intervensi sebagai 'nyaman', 'santai' dan 'menarik', dan merasa tercerahkan, dengan peningkatan kesadaran
diri, setelahnya.

Intervensi tinjauan hidup jangka pendek yang dipimpin oleh perawat efektif dalam meningkatkan
kesejahteraan spiritual orang yang menerima perawatan paliatif, terutama dalam dua komponen domain
spiritual, "tujuan hidup tercapai" dan "merasa baik tentang diri sendiri". Individu dapat merenungkan kisah
hidup mereka dan menemukan perspektif dan kegembiraan baru melalui proses tinjauan hidup. Penerapan
tinjauan hidup jangka pendek membutuhkan intervensi untuk menjadi perawat berpengalaman yang
memiliki keterampilan komunikasi yang kompeten. Dengan diberikan pelatihan yang tepat, perawat
perawatan paliatif khusus cenderung dapat menerapkan intervensi tinjauan hidup jangka pendek.

Critical aprasial :
a. Why was study done?
Studi dilakukan karena untuk memeriksa efektivitas dan penerapan intervensi tinjauan hidup jangka
pendek yang dipimpin perawat pada orang dengan penyakit yang membatasi kehidupan, tujuannya adalah
untuk meningkatkan kesejahteraan spiritual mereka dan mengurangi kecemasan dan depresi mereka.
Peneliti juga sudah menuliskan tujuannya dengan jelas, dan kata kunci yang digunakan sudah tepat oleh
peneliti, serta setiap kutipan yang diambil jelas sumbernya.

b. What is sample of size?

Ukuran sampelnya menggunakan perangkat lunak analisis daya PASS 13.0 (NCSS, Kaysville, USA),
ukuran sampel 45 peserta per kelompok akan memberikan studi daya 80% untuk mendeteksi ukuran efek
moderat 0,6 pada hasil pada tingkat signifikansi 5%. Tingkat gesekan 12%, mirip dengan Ando et al.
(2010), diasumsikan, sehingga setidaknya 51 (= 45 / 0,88) peserta per kelompok harus direkrut.
Peserta: Populasi target adalah orang yang menderita penyakit yang membatasi kehidupan, dan menerima
perawatan di rumah sakit, perawatan di rumah atau penjangkauan di rumah dari tim perawatan paliatif.
Metode yang digunakan ; Dua set kuesioner digunakan: sub-skala spiritual dari Kuesioner Kualitas Hidup
McGill, versi Hong Kong dan Skala Kecemasan dan Depresi Rumah Sakit, versi Cina. Proses intervensi
dinilai dengan menggunakan lembar pengamatan dan wawancara semi-terstruktur dari 12 peserta.

c. How were the data analyzed?

Data dirangkum dan disajikan menggunakan statistik deskriptif yang sesuai. Variabel hasil dianalisis
berdasarkan prinsip intention-to-treat. Metode persamaan estimasi umum (GEE) digunakan untuk
membandingkan perubahan diferensial di masing-masing variabel hasil antar waktu (T1 dan T2) antara
kedua kelompok, dengan penyesuaian untuk setiap perbedaan dasar dalam variabel hasil yang
mendasarinya. Semua analisis statistik dilakukan dengan menggunakan IBM SPSS 24.0 (IBM Corp.,
Armonk, NY) dan semua tes statistik yang terlibat berpasangan, dengan tingkat signifikansi ditetapkan
pada 0,05.

d. Are the measurements of major variables valid & relible?

Instrumen yang digunakan untuk penilaian variabel sudah valid/tepat. Karna sudah menggunakan metode
yang sesuai.

e. Were there any untoward events during the conduct of the study?
Untuk kejadian tidak diinginkan ada, seperti lamanya pengumpulan partisipan dan berkurangnya partisipan
karna ada yang meninggal, kemunduran pada fisik, dan peserta yang menarik diri dari kuesioner karna
alasan lelah.

f. What does this research mean for clinical practice?

Tujuannya agar intervensi tinjauan hidup jangka pendek yang dipimpin oleh perawat efektif, dalam
meningkatkan kesejahteraan spiritual orang yang menerima perawatan paliatif, terutama dalam dua
komponen domain spiritual, "tujuan hidup tercapai" dan "merasa baik tentang diri sendiri". Individu dapat
merenungkan kisah hidup mereka dan menemukan perspektif dan kegembiraan baru melalui proses
tinjauan hidup. Penerapan tinjauan hidup jangka pendek membutuhkan intervensi untuk menjadi perawat
berpengalaman yang memiliki keterampilan komunikasi yang kompeten. Dengan diberikan pelatihan yang
tepat, perawat perawatan paliatif khusus cenderung dapat menerapkan intervensi tinjauan hidup jangka
pendek.
Jurnal 2

Journal of the Formosan Medical Association (2018) 117, 798e805

Available online at www.sciencedirect.com

ScienceDirect

journal homepage: www.jfma-online.com

Original Article

Clinical characteristics and survival outcomes of

terminally ill patients undergoing withdrawal of
mechanical ventilation
Yu-Shin Hung a, Shu-Hui Lee b, Chia-Yen Hung a,c,
Chao-Hui Wang b, Chen-Yi Kao a, Hung-Ming Wang
a
,
Wen-Chi Chou a,d,*

a
Department of Hematology-Oncology, Chang Gung Memorial Hospital at Linkou, Taiwan
b
Department of Nursing, Chang Gung Medical Foundation at Linkou, Taiwan
c
Department of Hematology-Oncology, Division of Internal Medicine, Mackay Memorial Hospital,

Taipei, Taiwan
d
Graduate Institute of Clinical Medical Sciences, College of Medicine, Chang Gung University, Taiwan

Received 15 August 2017; received in revised form 29 September 2017; accepted 30 September 2017

Background: Withdrawal of mechanical ventilation is an important, but rarely explored issue in Asia
KEYWORDS during end-of-life care. This study aimed to describe the clinical characteristics and survival outcomes
of terminally ill patients undergoing withdrawal of mechanical ventilation in Taiwan. Methods: One-
Artificial ventilation; hundred-thirty-five terminally ill patients who had mechanical ventilation with- drawn between 2013
End-of-life care; and 2016, from a medical center in Taiwan, were enrolled. Patients’ clinical characteristics and survival
Outcome; outcomes after withdrawal of mechanical ventilation were analyzed. Results: The three most common
Terminally ill; diagnoses were organic brain lesion, advanced cancer, and newborn sequelae. The initiator of the
Withdrawal withdrawal process was family, medical personnel, and patient him/herself. The median survival
time was 45 min (95% confidence interval, 33

e57 min) after the withdrawal of mechanical ventilation, and 102 patients (75.6%) died within

one day after extubation. The median time from diagnosis of disease to receiving life- sustaining
treatment and artificial ventilation support, receiving life-sustaining treatment and artificial ventilation
support to “Withdrawal meeting,” “Withdrawal meeting” to ventilator with- drawn, and ventilator
 withdrawn to death was 12.1 months, 19 days, 1 day, and 0 days, respec- tively. Patients with a
diagnosis of advanced cancer and withdrawal initiation by the patients themselves had a significantly
shorter time interval between receiving life-sustaining treatment and artificial ventilation support to
“Withdrawal meeting” compared to those with non-cancer diseases and withdrawal initiation by family
or medical personnel.

* Corresponding author. Department of Hematology-Oncology, Chang Gung Memorial Hospital, 5 Fu-Hsing Street, Kwei-Shan Shiang, Taoyuan, Taiwan.
Fax: 886 3 3285818.
þ
E-mail address: wenchi3992@yahoo.com.tw (W.-C. Chou).

https://doi.org/10.1016/j.jfma.2017.09.014

0929-6646/Copyright ª 2017, Formosan Medical Association. Published by Elsevier Taiwan LLC. This is an open access article under the CC BY-
NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
 Conclusion: This study is the first observational study to describe the patients’ characteristics and
elaborate on the survival outcome of withdrawal of mechanical ventilation in patients who are
terminally ill in an Asian population. Understanding the clinical characteristics and survival out- comes
of mechanical ventilation withdrawal might help medical personnel provide appropriate end-of-life
care and help patients/families decide about the withdrawal process earlier.

Copyright ª 2017, Formosan Medical Association. Published by Elsevier Taiwan LLC. This is an open
access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by- nc-nd/4.0/).

Introduction patients with no possibility of recovering a meaningful life,

Cardiopulmonary resuscitation (CPR), including endotra-
cheal intubation and ventilatory support, was introduced
as a resuscitation method in acute cardiac events and
became a standard procedure performed for all life-
threatening illnesses.1 However, CPR was considered to be
a futile therapy because of its invasive interventions and
limited benefit in patients who were terminally ill, during
end-of- life care.2,3 One early study including 171
inpatients with cancer reported that none of the patients
who experienced anticipated cardiac arrest survived after
CPR.4 Further- more, in a meta-analysis study involving
1707 inpatients with cancer who had undergone CPR, the
survival rate at discharge was only 5.6%.5 As a result, CPR
was seldom provided to patients with a definitive terminal
illness, mostly with advanced cancer, after the promotion
of do- not-resuscitate orders (DNR) by palliative care
providers in Taiwan since 2000.
Unfortunately, some terminally-ill patients were put on
mechanical ventilation because of acute critical illnesses
without cardiac arrests. Unfortunately, some even had
CPR because of emergent events, unpredictable acute
events or personal wills toward end-of-life care. A small
subset of patients who were terminally ill might regain
hemodynamic stability after initial resuscitation; these
surviving patients might subsequently experience the
dilemma of difficult extubation and being intubated with a
ventilator support till death.5,6 Fewer than half of the
patients with prolonged ventilatory dependence, who
were treated with mechani- cal ventilation for more than
14 days after critical illness, survived beyond one year. 7
The definition of withdrawal of mechanical ventilation is
elective withdrawal of life- sustaining therapy and
artificial ventilation support in pa- tients who are
terminally ill. The aim of withdrawal of mechanical
ventilation is to relieve patients’ suffering and provide
comfortable end-of-life care; therefore, it is an important
step toward high quality end-of-life care in pa- tients who
are terminally ill on artificial ventilatory sup- port.
However, this issue has rarely been explored in the Asian
population because of the lack of consensus regarding the
withdrawal of mechanical ventilation between medical
personnel and patients/families, resistance from the fam-
ilies, as that might represent an assisted dying process in
Asian culture, and lack of legal protection from the coun-
try. Recently, one self-administered structured survey,
conducted among 1465 physicians across 16 Asian coun-
tries, evaluated physicians’ attitudes toward withdrawal
of life-sustaining treatment in end-of-life care. Even for
only 20% of the respondents reported often withdrawing
life-sustaining treatments.8
Palliative care has been promoted in Taiwan for more
than two decades to improve the quality of end-of-life
care among patients who are terminally ill. The Nature
Death Act was legislated in Taiwan to promote DNR in
patients who were terminally ill in 2000, but the issues
concerning the withdrawal of mechanical ventilation were
still widely debated until 2013, when the enactment of the
Nature Death Act Amendment allowed the withdrawal of
life-sustaining therapy and artificial ventilation in patients
who are termi- nally ill. To the best of our knowledge,
Taiwan is the first Asian country that legislated forgoing
life-sustaining thera- pies and withdrawal of mechanical
ventilation in patients at end-of-life. Although the
withdrawal of life-sustaining therapy and mechanical
ventilation is a routine clinical practice when in
agreement with patients, families, and clinicians’
decisions, data on patients’ clinical characteris- tics and
survival outcome of patients undergoing withdrawal of
mechanical ventilation in Taiwan are scarce. This study
aimed to describe the clinical characteristics of
terminally- ill patients on mechanical ventilation and their
survival after withdrawal. We would analyze the clinical
factors relevant to mechanical ventilation withdrawal
among these patients from a signal medical center in
Taiwan.
Methods
Patient selection
A total of 135 terminally-ill patients withdrew from life-
sustaining therapy and mechanical ventilation from
January 2013 to December 2016 were enrolled from Chang
Gung Memorial Hospital in Linkou. Terminal illness was
defined as having end-of-life status and had no chance of
recovering a meaningful life based on at least two
specialist physicians’ judgments. 8 Patients and/or families
who refused to forgo life-sustaining therapies or
withdrawal of mechanical ventilation were excluded. The
study protocol was approved by the Institutional Review
Board of the hospital.
Withdrawal of mechanical ventilation process
Withdrawal of life-sustaining therapy and mechanical
ventilation could be initiated by patients (based on verbal
consent or a written document of Advance Care Planning
[ACP]), their families, or primary care physician in the
case
of unconscious patients. After the patient was confirmed
as having an end-of-life status, a formal “Withdrawal
meeting,” with participation by the primary care
physician, nurses, patient (if conscious), and all family
members, who were third-degree relatives or closer, was
conducted to confirm the decision, determine the timing,
explain the detailed process, as well as the possible
distressing symp- toms of the patient, and discuss the
subsequent medical care and place of death after
withdrawal of mechanical ventilation. A multidisciplinary
palliative consultation care service (PCCS) team consisting
of a qualified palliative care physician, nurse specialist,
social worker, and a religious worker (Buddhist) was
consulted to join the formal meeting with the intent to
improve the quality of the end-of-life via control of the
distressing symptoms and to provide holistic care to both
the patient and family during and after the withdrawal
process. A brief patient flow diagram and the aims of our
study are illustrated in Fig. 1.
A case record form included the patient’s demographic
data, main diagnosis entity, referral department, Glasgow
Coma scale (GCS) level, presence of spontaneous respira-
tion, and the key person of initiation (initiator) for with-
drawal of the mechanical ventilator. The data were
collected by the palliative care nurse specialist immedi-
ately after mechanical ventilator withdrawal. Patient out-
comes, including the survival time after extubation,
discharge status, and place of discharge were collected
retrospectively. The time intervals from the date of intu-
bation, “Withdrawal meeting,” mechanical ventilation
withdrawn, and death were calculated from the first day
to the last day of each event. Follow-up continued for all
Figure 1 Brief flowchart of the withdrawal process in our institute and aims of our study.
patients until death or the cutoff of this study on March
31, 2017.
Statistical analysis
Basic demographic data were summarized as n (%) for
categorical variables, and mean with range, standard error
(SE), interquartile range (IQR), or 95% confidence interval
(CI) for continuous variables. Differences between time
intervals of the events were analyzed using the Wilcoxon
rank-sum tests. The percentage of initiator for withdrawal
of mechanical ventilation was tabulated as n (%) by main
clinical diagnosis and compared using the chi-square test,
or the Fisher’s exact test if the number of variable in any
cell was less than five. Statistical analyses were performed
by using SPSS 17.0 statistical software (SPSS, Inc, Chicago,
IL). All statistical assessments were 2-sided. A P-
value < 0.05 was considered as significant.
Results
The demographic characteristics of 135 patients are
shown in Table 1. The median age was 54 years (range,
0e96) and 68 patients (50.4%) were men. The most
common disease was organic brain lesion (n Z 45,
33.3%), followed by advanced cancer (n Z 26, 19.3%),
newborn sequelae (n Z 20, 14.8%), and respiratory
failure (n Z 13, 9.6%). The
leading referral departments were medical intensive
care unit (n Z 68, 50.4%), pediatric intensive care unit
(n Z 39, 28.9%), and neurologic intensive care unit (n Z
28, 20.7%).
 ventilator withdrawn to death was 12.1 months (range,
Table 1Basic patients’ characteristics (n Z 135).
0e108.5), 19 days (range, 0e321), 1 day (range, 0e31),
Variable Sex Category No (%) and 0 days (range, 0e104), respectively. The median time
Male Female 68 (50.4) from receiving life-sustaining treatment and artificial
Median (range) 67 (49.6) ventilation support to “Withdrawal meeting” was signifi-
Age Advanced cancer 54 (0e96) cantly shorter for patients with advanced cancer than for
those with chronic disease with organ failure (13.0 days
Main diagnosis of Newborn sequelae 26
vs. 22.2 days, P Z 0.001). There was no difference in term
underlying Trauma or OHCA (19.3)
disease of the median time interval from “Withdrawal meeting”
Chronic disease with 20 and ventilator withdrawal (P Z 0.39) and ventilator
organ failure (14.8) withdrawn to death (P Z 0.07) for patients with cancer
12 (8.9)
Organic brain lesion 45 (33.3) and the other non-cancer diseases. Initiation of with-
Respiratory failure 77
13 (9.6) drawal of mechanical ventilation by patients themselves
Heart failure Renal (57.0)
9 (6.7) had a significantly shorter time interval between endo-
failure Hepatic failure 7 (5.2) tracheal intubation to “Withdrawal meeting” than that by
Medical ICU Pediatric 3 (2.2) family (10.0 days vs. 20 days, P Z 0.008), and by medical
Department of 68 (50.4%) personnel (10.0 days vs. 19 days, P Z 0.010) (Fig. 2).
ICU Surgical ICU No
patient referral Yes 39 (28.9%)
There was no difference of the median time interval be-
tween receiving life-sustaining treatment and artificial
28 (20.7%)
Hospice care before ventilation support and “Withdrawal meeting” for initia-
115 (85.2%)
initiating mechanical tion of withdrawal of mechanical ventilation by families
20 (14.8%)
ventilator withdrawal and medical personnel (P Z 0.35).
All the patients were deceased before the end of March
31, 2017. The median survival time was 45 min (95% CI,
Initiator of extubation Family98 (72.6) 33e57 min) after the withdrawal of mechanical
Medical personnel24 (17.8) ventilation, and 102 patients (75.6%) died within one day
Patient13 (9.6) after extu- bation; another 25 patients (18.5%) died on
himself/herself days two to seven after extubation. The median
Glasgow coma scale 3 91 (67.4%) survival time was
4 14 (10.4%) 59 min (95% CI, 0e208 min) for patients with cancer and
5 16 (11.9%) 44 min (95% CI, 33e54 min) for patients with non-cancer
6 7 (5.2%)
disease (P Z 0.91). The distribution of survival time be-
tween the patients with cancer and with non-cancer dis-
7 6 (4.4%)
ease after extubation is shown in Fig. 3. All the patients
8 1 (0.7%)
Spontaneous with cancer died within one week after withdrawal of
No 43 (31.9%)
breathing before mechanical ventilation; in contrast, eight of the 109 pa-
Yes 92 (68.1%) tients (7.3%) with non-cancer disease lived longer than one
mechanical ventilator
withdrawal week after withdrawal of mechanical ventilation. One pa-
Status at discharge tient with non-cancer disease died at day 55 and another
Death 126 (93.3) one died at day 104 after withdrawal of mechanical
8 (5.9) ventilation.
Institutional transfer
1 (0.7)
The majority of initiators for withdrawal of mechanical
Discharge to home
ventilation were families (n Z 98, 72.6%), followed by
OHCA, out of hospital cardiac arrest; ICU, intensive care unit.
medical personnel (n Z 24, 17.8%), and patients them-
selves (n Z 13, 9.6%). There was a significant difference in
patients’ disease entities among the initiators of with-
Upon withdrawal of mechanical ventilation, all of the pa- drawal of mechanical ventilation (Table 3). Families had
tients were unconscious, with 91 patients (67.4%) in a the highest percentage of initiating the withdrawal
deep coma (GCS score 3), while the other 44 patients process when the main diagnosis was organ failure due to
(32.6%) had GCS scores of 4e8. There were 92 patients chronic illness (80.9%), followed by newborn sequelae
(68.1%) and 43 patients (31.9%) with and without (75.0%), advanced cancer (57.7%), and out-of-hospital
preservation of sponta- neous respiration before the cardiac-ar- rest (OHCA) (50.0%). Medical personnel had the
withdrawal of mechanical highest percentage of initiating the withdrawal process in
ventilation, respectively. At discharge, 126 patients patients with OHCA (50.0%), newborn sequelae (25.0%),
(93.3%) had died, eight patients (5.9%) were transferred to and had the lowest percentage in patients with organ
other institutions for further care, and one patient (0.7%) failure due to chronic illness (13.0%) or advanced cancer
was discharged to home. (11.5%). Patients themselves had the highest percentage of
The time interval of events is summarized in Table 2. initiating the withdrawal process in those with advanced
The median time interval from main diagnosis of disease cancer (30.8%), done via verbal consent while they still
to receiving life-sustaining treatment and artificial venti- had clear con- sciousness or presence of an ACP. In
lation support, receiving life-sustaining treatment and contrast, only 6.5% of patients with non-cancer disease
artificial ventilation support to “Withdrawal meeting,” initiated the withdrawal process themselves and none of
“Withdrawal meeting” to ventilator withdrawn, and the patients with OHCA presented an ACP document.
 Table 2Time interval among different events.
Event, median time interval Overall, Cancer, n Z 26 Chronic diseaseNewborn Trauma or OHCA, P value
(range) n Z 135 with organ failure, sequelae, n Z 12
n Z 77 n Z 20
Main diagnosis of disease to 12.1 (0e108.5) 10.0 (1.2e44.1) 13.1 2.6 (0e8.5)0 (0e0.8) 0.009
receive life-sustaining treatment (1.2e108.5)
and artificial ventilation support,
months
Receiving life-sustaining 19.0 13.0 22.2 26.7 (1e223) 16.2 0.001
treatment and artificial (0e321) (0e46) (1e321) (3e37)
ventilation support to
“Withdrawal meeting,” days 1 (0e31) 1 (0e11) 1 (0e21) 1 (0e31) 1 (0e6) 0.39
“Withdrawal meeting” to
withdraw mechanical ventilation,
days 0 (0e104) 0 (0e5) 0 (0e104) 0 (0e4) 0 (0e0) 0.07
Withdraw mechanical ventilation
to death, days
OHCA, out of hospital cardiac arrest.

Discussion time to death after withdrawal from mechanical

This study is the first observational study to describe the
patients’ characteristics and elaborate on the survival
outcome of withdrawal of mechanical ventilation in pa-
tients who are terminally ill, in an Asian population. Our
patient cohorts were characterized by similar distribution
of sex, non-cancer diseases dominant (4-fold higher than
malignant diseases), and across a wide range of ages, from
0 to 96 years old. In addition, our patients had lengthy
time intervals between artificial ventilation to
“Withdrawal meeting” (median 19 days) and very short
survival times after ventilation withdrawal (median 45
min). The median
ventilation in our cohort was similar to other reports from
Western countries, ranged from 35 to 55 min; while
the median
duration of mechanical ventilation in our cohort was
longer (19 days vs. 3.4e10 days).9e11 The results indicated
that the timing of determination of withdrawal of
mechanical ventilation was very late in our patient
cohorts. A similar situation with the DNR designation
among patients with cancer who were terminally ill, was
observed in our previ-
ous report, as orders were mostly written on the day of
the patient’s death.12
The reasons leading to withdrawal of mechanical venti-
lation being done that close to patient death were
affected

Figure 2 Time interval between intubation to “Withdrawal meeting” stratified by the initiator of withdrawal process. The circles
represented two outliers with extremely long interval between intubation and withdrawal meeting.
Figure 3 Distribution of survival time between patients with cancer and with non-cancer disease after withdrawal of mechanical
ventilation.
Table 3Initiator of mechanical ventilation withdrawal
according to patient’s main diagnosis.
Main diagnosisExtubation initiator, n (%) Patient Family
Medical
personnel
Cancer, n Z 26 8 (30.8) 15 (57.7) 3 (11.5)
Chronic disease with 5 (6.5) 62 (80.9) 10 (13.0)
organ failure, n Z 77
Newborn sequelae, n Z 0 (0) 15 (75.0) 5 (25.0)
20
Trauma or OHCA, n Z 12 0 (0) 6 (50.0) 6 (50.0)
Overall, n Z 135 13 (9.6) 98 (72.6) 24 (17.8)
OHCA, out of hospital cardiac arrest. P < 0.001 among
different
groups.
by multiple factors related to medical personnel, patients,
and their families. First, medical personnel may be reluc-
tant to discuss the withdrawal issue because of difficulty
in predicting the likelihood of survival, 13 under-estimating
disease severity,11 incorrect perception of patient’s or
family’s willingness, 13 lack of training,14,15 or individual’s
preference16 and philosophy17,18 regarding end-of-life care.
Previous surveys have suggested that the severity of illness
and the past and projected future quality of life of
patients might influence decisions of medical personnel to
forgo the life sustaining treatment.19,20 In the current
study, we also observed that medical personnel had the
highest proba- bility to initiate the withdrawal process in
patients with the poorest outcome (for example, who
presented with OHCA) and least probability to initiate the
withdrawal process in patients with chronic illness in
which it was difficult to predict outcome in cases of acute
exacerbations. This
finding highlights the importance of incorporating
palliative care into critical care education for delivery of
appropriate end-of-life care.21
A second reason for late withdrawal of mechanical
ventilation was the family’s concern that discussion of this
issue might imply abandonment of all of a patient’s med-
ical care,22 receiving the implicit answers about patient’s
prognosis from the medical personnel, 23 and that the topic
would cause conflict between medical personnel and
family members.24,25 Traditionally, directly discussing end-
of-life planning with a patient with an imminent death is a
sensitive and forbidden issue in Asian culture. Decision
making by next-of-kin was more prevalent than medical
personnel or patients regarding end-of-life care in our
country; consequently, the directive of patients was
ignored. The culture discrepancy would explain that the
majority of proposals to withdraw life support in patients
who were incapacitated were initiated by medical
personnel rather than by family members in Western
countries26,27; however, the situation was reversed in our
study and reports from other hospitals from Taiwan. 28 The
decision to forgo life-sustaining treatment and withdrawal
of mechanical ventilation should be judged in a patient’s
best interests,23 rather than distorted by families’ will-
ingness. Previous studies had reported that good commu-
nication by medical personnel may shorten the dying
process for patients staying in intensive care units. 29,30 To
maximize patients’ quality of end-of-life care and mini-
mize the conflict or stressing of the family members, the
decision to forgo life-sustaining treatment and withdraw
mechanical ventilation is an important issue that requires
consideration of the cultural sensitivity and continuation
of communication between medical personnel and family
members.30
 Finally, and most importantly, less than 10% of the pa-
tients in our cohort, had documentation of verbal consent
for DNR or an ACP before withdrawal of artificial
ventilation. As the majority of patients are unable to
communicate at the time of receiving life-sustaining
treatment, only a small subset of patients has the ability
to make their own decisions to select the appropriate
medical care at end-of-life.31 In Taiwan, patients with
cancer expressed a strong preference for clinicians to
disclose bad news before releasing it to their families.32
Unfortunately, informing patients about their terminally ill
diagnosis and prognosis was frequently modi- fied by
families in Taiwan society. A previous study reported that
the preferences of Taiwanese patients with cancer
regarding their end-of-life care were disregarded if there
was a disagreement between patients and their families. 33
The fact that a patient’s right was overridden by a family’s
when the patient was unconscious and approaching end-
of- life status, might partially explain why 10% of the
patients with an ACP or documentation of verbal consent
for DNR still received endotracheal tube intubation and
artificial venti- lation in our study. Our study showed that
patients with an ACP or documentation of verbal consent
for DNR had signif- icantly shorter time intervals between
intubation to “With- drawal meeting” than those without;
this result, or the families possibly conveying the patient’s
willingness might explain the decision of early withdrawal
of life-sustaining treatment and artificial ventilation by
medical personnel. Efforts through education promoting
early ACP designations not only respect patients’
autonomy but also convince medical personnel and family
member to provide high quality end-of-life care in Taiwan.
A formal “Withdrawal meeting” was conducted for all
our patients before withdrawing life sustaining treatment
and artificial ventilation. The “Withdrawal meeting” is
fundamental to confirm the consensus on the details of
the extubation process among all medical personnel and
family members. Through the meeting, the palliative care
team can get involved in the withdrawal process, convey
the consensus reached by the primary care medical
personnel and family members, provide bereavement
support for the survivors, and identify individual family
members who have the most serious psychosocial trauma
or prolonged grief disorder. The median time interval from
the “Withdrawal meeting” to performing the ventilation
withdrawal was only one day; in addition, there was no
withdrawal pro- cedure canceled after the “Withdrawal
meeting” in our study. As a crucial role of the “Withdrawal
meeting” in our patient cohort, we encouraged primary
care medical personnel to launch the “Withdrawal
meeting” as soon as possible if the patient’s death was
imminent.
There was no significant difference in survival times
after withdrawal of ventilation between patients with
cancer and with non-cancer disease in our study. However,
eight of 109 (7.3%) patients with non-cancer disease lived
more than one week after ventilation withdrawal, repre-
senting the difficulty of predicting life expectancy in a
very small subset of patients with non-cancer disease or
even approximate end-of-life status. Patients with
terminally ill cancer almost always presented with rapidly
deteriorating courses with mostly cancer-related causes of
death. In contrast, patients with non-cancer diseases had
slower progressive courses with main causes of death due
to either
repeated acute exacerbations of the underlying illness or
acute complications of other illnesses. Therefore, the end-
of-life trajectories varied between patients with cancer
and non-cancer diseases. Awareness of the extremely short
survival time after terminal extubation might help medical
personnel to provide appropriate end-of-life care to mini-
mize the distressing symptoms during the withdrawal pro-
cess. Most importantly, acknowledgment that a small
subset of patients with non-cancer disease might have
widely varied survival times after the withdrawal process
is important so that family members are able to
accompany the patient approaching death, select the
place of patient’s death, and complete the patient’s
wishes.
Data on the clinical features and outcome of
withdrawal of life-sustaining treatment and artificial
mechanical ventilation are very limited in Asian
populations. To our knowledge, this is the first study to
address this issue in Asian countries. However, our study
had several limitations. First, this is a retrospective study
conducted at a single medical center. Therefore, the
study result may not represent the characteristics of the
entire Taiwanese pop- ulation. Second, due to the
methodological limitations, we are unable to address the
impact of the withdrawal process on end-of-life care
quality of the patients. Third, some patients in our study
were newborn or in comatose con- sciousness, which were
inherently to expression their ver- bal consent for
withdrawal ventilation. Therefore, it was unable to
evaluate the impact of initiator on withdrawal of
mechanical ventilation among those patient groups.
Finally, the decision of terminal extubation may be
multifactorial8 and cannot be explained by a single or few
variables identified in our study. Prospective multi-
institutional studies may be helpful to overcome these
limitations.
In conclusion, we reported clinical characteristics and
survival outcome of patients who were terminally ill, who
received withdrawal of life-sustaining treatment and
artifi- cial mechanical ventilation at a medical center over
four years in Taiwan. We show that the median time to
death after withdrawal from mechanical ventilator was
very short and the majority of decisions regarding
ventilator withdrawal were taken by people other than the
patient in Taiwan. Under- standing the clinical
characteristics and survival outcomes of mechanical
ventilation withdrawal might help medical personnel
provide appropriate end-of-life care and help pa-
tients/families decide about the withdrawal process
earlier.
Funding
This research did not receive any specific grant from
funding agencies in the public, commercial, or not-for-
profit sectors.
Conflicts of interest
No competing financial interests exist.
Acknowledgments
The authors would like to thank all members in the Chang
Gung Memorial Hospital Cancer Center for their help in
data
collection. We would also like to extend our gratitude to Ms. Vengi Ho for her invaluable contribution in data
collection.

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Analisis Jurnal 2

A. Profil penelitian
1. Judul penelitian
Clinical characteristics and survival outcomes of terminally ill
patients undergoing withdrawal of mechanical ventilation (karakteristik
klinis dan hasil bertahan hidup pasien pasien yang di lakukan penarikan
ventilasi)
2. Pengarang/ author
Yu-Shin Hung, Shu-Hui Lee, Chia-Yen Hung, Chao-Hui Wang,
Chen-Yi Kao, Hung-Ming Wang,Wen-Chi Chou
3. Sumber/ source
Science Direct (www.jfma-online.com)
4. Major/minor Subject (Keywords)
Nursing process on terminal diseases, Artificial ventilation; End-of-life
care; Outcome; Terminally ill; Withdrawal
5. Abstrak
a. Latar belakang
Resusitasi jantung paru (CPR), termasuk intubasi endotrakeal dan
dukungan ventilasi yang diperkenalkan sebagai metode resusitasi pada
penyakit jantung akut dan menjadi prosedur standar yang dilakukan
untuk semua penyakit yang mengancam jiwa. Namun CPR dianggap
sebagai terapi yang sia-sia karena intervensi invasif dan manfaat yang
terbatas pada pasien yang sakit parah selama perawatan akhir hidup.
Akibatnya, RJP jarang diberikan kepada pasien dengan penyakit terminal
definitif. Kebanyakan RJP di gunakan pada pasien dengan kanker
stadium lanjut.
Penarikan ventilasi ini bertujuan untuk meringankan penderitaan
pasien dan memberikan perawatan akhir hidup yang nyaman. Oleh
karena itu, ini merupakan langkah penting menuju perawatKesimpulan
Tiga diagnosis paling umum adalah lesi otak organik, kanker stadium
lanjut, dan gejala sisa yang baru lahir. Inisiator dari proses penarikan
adalah keluarga, tenaga medis, dan pasien sendiri. Waktu kelangsungan
hidup rata-rata adalah 45 menit (interval kepercayaan 95%, 33-57 menit)
 setelah penarikan ventilasi mekanis pasien meninggal dalam satu hari
masa ekstubasi
Waktu rata-rata mulai dari diagnosis penyakit hingga pasien
menerima perawatan yang mempertahankan hidup dan dukungan
ventilasi buatan di tarik adalah 12.1 bulan, 19 hari, 1 hari, dan 0 hari.
Pasien dengan diagnosis kanker lanjut dan inisiasi penarikan ventilator
oleh pasien itu sendiri memiliki interval waktu yang jauh lebih singkat
dibandingkan dengan mereka yang memiliki penyakit non-kanker dan
inisiasi penarikan oleh keluarga atau medis maupun personil.
6. Tahun publikasi
Diterima pada 15 Agustus 2017, di terima dalam bentuk revisi pada 29
September 2017, fiksasi pada 30 September 2017
B. Critical Aprasial
1. Why was study done?
Studi dilakukan untuk mengetahui bagaimana kelangsungan hidup pasien
terminal setelah di lakukannya penarikan ventilator atau ventilasi mekanik.
Penulis juga sudah menuliskan tujuannya dengan jelas. Kata kunci yang di
gunakan peneliti sudah tepat serta kutipan yang di ambil oleh peneliti juga
memiliki sumber yang tepat.
2. What is sampel of size?
Sampel penelitian diambil menggunakan tes Wilcoxon rank-sum. Analisis
statistic dilakukan dengan menggunakan perangkat lunak statistic SPSS 17.0
(SPSS, Inc, Chicago, IL). Ukuran sampel yakni 135 pasien sakit parah yang
menggunakan ventilasi mekanik sebagai alat penunjang hidupnya.
Peserta: populasi target penelitian adalah pasien yang menerima perawatan di
rumah sakit dengan menggunakan ventilasi mekanik sebagai alat penunjang
kehidupannya.
Metode: Menggunakan metode analisis data terhadap pasien setelaah di
lakukannya penarikan ventilator

3. How were the data analyzed?

 Data dirangkum dan disajikan menggunakan staistik deskriptif yang sesuai.
Variable di analisis menggunakan prinsip Wilcoxon rank-sum dimana Penilaian
statistic di ambil menggunakan dua sisi. A P-nilai <0,05 dianggap signifikan.
4. Are measurement of major variable valid & reliable?
Instrument yang digunakan untuk penelitian variable sudah valid dan tepat di
karenakan pada penelitian ini sudah menggunakan metode yang sesuai.
5. Were there any untoward events during the conduct of the study?
Terdapat 10 % kejadian yang tidak di inginkan pada penelitian ini yakni pada
saat pengambilan keputusan oleh pasien, pasie tiddak mampu untuk berbicara
sehingga keluarga terkadang memodifikasi keputusan yang akan di berikan
kepada tenaga medis
6. What does this research mean for clinical practice?
Penarikan ventilasi mekanik ini bertujuan untuk meringankan
penderitaan pasien dan memberikan perawatan akhir hidup yang nyaman. Oleh
karena itu, ini merupakan langkah penting menuju perawatan akhir yang
berkualitas tinggi pada pasien yang sakit parah dengan dukungan ventilasi
buatan. Penelitian ini bertujuan untuk menggambarkan karakteristik klinis pasien
yang sakit parah pada ventilasi mekanik dan kelangsungan hidup mereka setelah
penarikan ventilator tersebut.
Jurnal 3

Available online at www.sciencedirect.com

ScienceDirect

Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143

ASEAN-Turkey ASLI (Annual Serial Landmark International) Conferences on Quality of Life 2016

AMER International Conference on Quality of Life, AicQoL2016Medan

25 – 27 February 2016, Medan, Indonesia

Quality of Life amongst Family Caregivers of Older Persons

with Terminal Illnesses

*
Siti Norehan Ab Ghani, Husna Ahmad Ainuddin , Akehsan Dahlan

Occupational Performance and Behaviour Measurement Group (RIG), Occupational Therapy Department, Faculty of Health
Sciences / CORE Management Science, Universiti Teknologi MARA, Cawangan Selangor, Kampus Puncak Alam, 42300 Selangor,
Malaysia

Abstract

The study aims to identify the constructs of quality of life amongst family caregivers who care for older persons with a terminal
illness. A semi-structured interview was conducted with ten caregivers in Selangor, Malaysia. Data were closely analyzed using
the Interpretative Phenomenological Analysis (IPA). Two superordinate themes emerged from the interview transcripts, i.e.
"strengthening family bonds" and "improved sense of self-worth". The overall themes emerged indicates the constructs of the
quality of life in relation the caring of the older person with terminal illnesses. This present study provides new insights for
healthcare professionals. Therefore, they can promote the participation of the family members in providing the care for the older
person who need the care for them to achieve their maximum quality of life. © 2015 The Authors. Published by Elsevier Ltd.
 © 2016 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND license
Peer-review under responsibility of AMER (Association of Malaysian Environment-Behaviour Researchers) and cE-Bs (Centre (http://creativecommons.org/licenses/by-nc-nd/4.0/).

PeerforEn-revironmentiewunder-Behaviour responsibilityStudies, ofthe AssociationFacultyof Architecture,ofMalaysian EnvironmentPlanning&-Surveying,BehaviorResearchers,Universiti AMERTeknologi(ABRAMARA, malaysia)Malaysia.

Keywords: Interdependence; older people; quality of life; interpretative phenomenological analysis

1. Introduction

Changes in health care and advancement in modern medicine have contributed to longevity. Subsequently, there
are increasing numbers of the older population in Malaysia. For example, in Malaysia, the older population is

a. Corresponding author. Tel.: +03-32584380;

fax: +03-32584599 E-mail address:
akehsan@salam.uitm.edu.my

1877-0428 © 2016 The Authors. Published by Elsevier Ltd. This is an open access article under the CC BY-NC-ND
license (http://creativecommons.org/licenses/by-nc-nd/4.0/).

Peer-review under responsibility of the Association of Malaysian Environment-Behavior Researchers, AMER (ABRA
malaysia) doi:10.1016/j.sbspro.2016.10.228
136 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143

expected to rise to 9.8% by 2020 compared to only 4% in 1998 (Razali et al. 2013). With increasing in age, they are
at a higher risk of suffering from terminal illnesses and face various disabilities. Terminal illness such as malignant
neoplasm, heart, and pulmonary conditions are expected to be a significant medical problem amongst this
population. Terminal illness is defined as a disease that is active and progressive that cannot be cured or there is no
expectation of treatment recovery (Gonorazky, 2011). Momtaz et al. (2010) found that 77.7% of their samples in the
elderly population have at least one chronic condition. Most of the older patients with a terminal illness have
impairments in quality of life resulting from the declining and the deterioration of the health status. The study by
Albuquerque et al. (2015) has confirmed that currently there are no available curative treatments for patients with
multiple sclerosis and that they have impairments in quality of life compared to healthy people in all areas.
Meanwhile, a study by Simona et al. (2014) also found that patients with a chronic disease had a negative impact on
their quality of life. Due to the deterioration of the health condition, the older person will reach to the point where
they need to get the support and help from their family members to accomplish their routine daily activities. Family
members such as the spouse, children and siblings often involve in providing such care. Family involvement in
providing the care for older persons with a terminal illness is likely to maximize the quality of life of these older
persons with a terminal illness. A study by Senden et al. (2015) expressed that family caregivers of an older person
with cancer feels responsible for the patient's well-being and for providing care for their loved one.

Being a carer for an older person with a terminal illness is extremely complex and demanding. Caregivers usually
faced various challenges and barriers while providing the care for the care recipient. A study by Marks et al. (2004)
found that caregivers are at a higher risk for psychological and physical exhaustion. Pinquart and Sorenson (2003)
also found differences among caregivers and non-caregiving peers where caregivers report higher levels of
depressive symptoms and fatigue compared to the non-caregiving peers. Meanwhile, Michalik and Valenta (2012)
found in their study that caregivers had reported negative feelings and experiences concerning the long-term care for
the care recipient. The existence of the negative experiences, included the sense of exhaustion, depression,
hopelessness and loss of the ability to enjoy free time.

However, many carers find that taking care of older persons with a terminal illness is a rewarding experience that
eventually facilitates a sense of the quality of life. The study by Lkhoyaali et al. (2015) showed the benefits of
caregiving in older persons with cancer family members. They said that caregivers have a feeling of satisfaction,
personality enhancement, having the meaning of life and a greater appreciation of the family. Findings from the
study by Stajduhar (2003), also reported that many family caregivers expressed positive impact on life-enriching
experience resulted from providing the care for their loved one. Caregivers believe that they have an opportunity to
give something back to the person they are caring for, and it also gives a sense of achievement when they can fulfill
the final wishes of the patient. While providing the caregiving tasks, it also allows them to spend intimate times
together with the patients and they can share the final moments that are meaningful in more efficient ways.

Besides this, a study by Haley et al. (2009) reported that the experiences in providing the care for the patients
with disabilities can also bring families together and cause people to appreciate and see their life in various
perspectives. The challenges and demanding tasks that they go through over a long period of time can teach

themselves to become a stronger person. Meanwhile, the scarification and the contribution of their effort to reduce
the patient’s burden plays a significant role in achieving the patient’s maximum quality of life and will also make
them become a better person.

Studies that indicated the positive benefits of caring for the older person with a terminal illness are often
conducted in Eastern and Western countries (Lkhoyaali et al. 2015; Haley et al. 2009 & Stajduhar 2003). However,
the evidence regarding the benefits of caring for an older person with a terminal illness in Malaysia is limited and
scared. Hence, the aim of the study is to identify the benefits of caregiving for older persons with a terminal illness
and its impact to their of quality of life.

2. Methodology

This study involved a close examination of the experiences and perspectives of family caregivers who care for an
older person with terminal illnesses. Since this study aims to explore in detail and understand about people's life
experiences, therefore, a phenomenology approach was used in conducting this study as it is well suited to the
objectives of the study.
 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143 137

The study was approved by the ethics committee in Universiti Teknologi MARA (UiTM) for the protection of
human subjects and conducted in Selangor. We used a convenience sampling to recruit caregivers aged more than
18 years old and who provided the most care for an older person with a terminal illness. A total of ten caregivers
were recruited for this study. The family caregivers were approached either during hospital visits or over the
telephone call to schedule an interview session and invitation to participate. The detail of the study was brief
accordingly, and each respondent who agreed to be interview was requested to fill in a written consent form. In-
depth semi-structured interviews were conducted using an interview guide that consists of open-ended questions so
that the respondents can answer it in their words. As a result, the researcher can find out more about person
experiences. The researchers designed the interview guide based on Kawa's model (Iwama et al. 2009). The Kawa
Model was created by Japanese occupational therapist, Michael K. Iwama in the 1990s. The metaphor of the river
and its structured environment was used to symbolize the complexity of the phenomenon. Since this study is to
investigate the person's life experience, therefore Kawa's model is suited to be used as a guideline. The duration of
interviews was approximately 30 to 45 minutes for each respondent. During the interview session, the conversation
between the interviewer and respondent were recorded using an audio recording device. The recorded interviews
were transcribed verbatim where the researchers were typing out every word and sound of the conversation.

The interview transcripts were analyzed using Interpretative Phenomenological Analysis (IPA) as described by
Smith et al. (2009). The IPA was performed in six steps. In the first step, the interviews transcribed were read by the
authors several times to get a sense of the overall data (data immersion). The IPA second step involved the writing
of the theoretical comments (text analysis). The third step is the initial process of theme development. The fourth
step wass where the authors made the connection between the themes emerged. The fifth step is followed by the
analysis of other interviews by subsequently following the same steps as step one until fourth respectively. Finally,
in step six, the authors searched for the similarities of themes across interviews. The results revealed through
superordinate themes and several subthemes. Some of the quotes from interview transcripts were selected to
represent the emerging themes. The forward translation techniques were used to translate the selected quotes from
Malay (local language) to English. This particular method is used to increase the quality of the translation, the first
author translated quotes were checked by the language experts and changes were made accordingly.

3. Findings

The ten respondents that participated in the study were eight females and two males. The age range of the
caregivers was between 18-55 years old. The employment status of the caregivers were self-employed, student and
housewife respectively. Besides this, the relationship of the caregivers with the older person with a terminal illness
were daughter, grandchild and spouse. The findings presented using IPA revealed two superordinate themes, each
with a vary of numbers of the subthemes. The emerged superordinate themes and subthemes of the benefits of
family involvement in taking care older person with a terminal illness are summarized in Table 1.

Table 1. Superordinate and subthemes emerged from the interview transcripts

Superordinate Themes Subthemes

"Strengthen family bonds." Promote the strong bonding between caregiver and patient

Create a value of responsibilities among family members

 Strengthening family relationships

"Improved sense of self-worth." Educate themselves to become a patience person

Have a better understanding of other people’s problems

Create feeling a sense of becoming a better person

The respondents in this study revealed two themes with various subthemes. The overall themes emerged
indicates the constructs of the quality of life in relation the caring of the older person with terminal illnesses. These
themes represent the respondents' experiences and their perspectives that are further detailed with quotes from the
interviews (Smith, Flower, & Larkin, 2009).
138 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143

3.1. Theme 1: Strengthen family bonds

Most of the caregivers expressed their gratitude because they can show their love to the older person while they
provide the care for them. An older person who cannot be independent by themselves will not feel isolated and
abandoned when there are family members or relatives who are willing to help. This situation will create a great
family bonding between caregivers and the older person. It was illustrated by Mrs. A, whose mother had been
diagnosed with stage four breast cancer. She described the experience as:

“It is the right time and a chance for me to express my love for my mom while providing the care with all my
heart…Before this, she was able to do most of the things by herself…Now she is not able to perform by herself, who
else can help if not her child…In fact, my mom prefers me to change her diapers...She feels shy with outsiders.”

Another 32 years old caregiver stated:

“Now I'm providing mostly all of my time to take care of my mom. Whatever she wants I'm trying my best to
fulfill her needs. Before this I am always busy with my works. But now since my mom is not in a good condition, I
will make sure always to be with her and provide my support. In this condition, there was nothing much that she
wants. Only the love and support of her children will make her a little bit stronger. When I'm able to make my mom
happy, indirectly it will reduce her pain.”

Besides this, there were also the caregivers who said that the positive effects can be explored as a result of
providing the care for the older person with a terminal illness such as able to create a value of responsibilities
among family members. This situation is illustrated when each of family members can play a role in the
implementation of a task to take care of the older person. For the older person who need the care 24-hours per day,
family members can perform the caregiving activities on a rotating basis according to the individual's ability. It is
illustrated by 23 years old caregiver who works as a student and plays a role in providing the care for her elderly
mother with a terminal illness. She said:

“I am the youngest of four siblings. I'm still a student. Therefore, I have plenty of free time to provide care for
my

mother. Both of my sisters and my brother are working. So, during the day, I take the responsibility to look after my
mom while in the night we will rotate with each other’s. What's the most important thing has we never let our

mother stay at home alone. If my mom needs to attend the appointment at the hospital, usually my brother is in
charge to bring her. Since my mom could not walk by herself, therefore she needs to be carried. Our capacity as a
woman is not a lot much, so my brother will bring her to the hospital. For the financial issues, my brother and

sisters who were already working will provide the money. As for me, of course, I could not help to contribute
financially. Since all of us always help each other’s, praise to the GOD, we do not have any problems in providing
the best care for our mom.”

There were also the caregivers who said that family relationships became closer because they always gathered
together to obtain their views and advice on the care and treatment required by the older person. Typically the
consensus of the family members will be achieved in securing the best results for the older person. Discussions
among family members can develop a sense of respect for each other. This issue is explained by Mrs C who is
taking care of her father who is paralyzed because of a diabetes mellitus complication. She said:
 “I have nine siblings. When all of us become adults and already married, we have our life. We were rarely

gathered together. Since my father was sick, we were always gathered together. Before this, we just call with each
other’s. But when my dad's condition becomes worse all of us trying our best always to come home to see our father

progress. It is much more satisfied to be able to see him with our own eyes. If there were any problem or issues
arise, we would discuss it together. Usually, for a critical decision the opinion from older siblings will become as
our guideline to solve the problem.”

3.2. Theme 2: Improved sense of self-worth

The caregiver also did not deny that caring for an older person with a terminal illness was not a simple task, but
with the experience of taking care of the older person can educate themselves to become a patient person. This point
is illustrated by the 30 years old caregiver. She said:

“Dealing and caring for a sick person is very challenging. It is because they have their mood swings. What else
we can do, nothing more, but just be patience. When we feel angry, we tell ourselves to be patience…Every time we
 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143 139

are feeling angry, be patience. If we cannot hold it, take a second to leave the situation and get some fresh air
outside. As the time flows, we are able to become a patience person.”
This issue is supported by another caregiver when she said:

“If I feel angry, usually I will recite a lot of "Istighfar." There is no point to scold him back. He is already in pain

what else he can do, he only knows to rebel. We also have to understand that people who are sick is not in her right
mind. For that, we who are in the right mind are the ones who always needs to be patient.”

Furthermore, some caregivers perceived their experience from more in positive than a negative point of view. In
fact, most of the caregivers may find out that they have a better understanding of other people's problems when
having to deal with the challenges of taking care of their family members who were suffering from terminal
illnesses. They can also show a good example to their children and the younger generation to promote a moral value
in oneself and to be willing to lend a hand to those who are dealing with adversity. The caregiver illustrates this
issue. She said:

“This time, he is feeling sick, so we help him as much as we can. Who knows what happen in future, it could be
us that get sick. When we show a good example to the children by taking care of our mother or father then in future
they will be the one who take care of us.”

Receiving the support and care from the family members will be very vulnerable for the terminally-ill patients
since they were suffering from progressive deterioration of health and decreased in functional activities. Family
members can reduce the older person's burden by providing the help so that the patient can perform the activities
that they cannot manage by themselves effectively. While performing these tasks, it eventually will create a sense of
becoming a better person from the individual point of views. This issue was described by the caregiver who was
taking care bedridden mother because of terminal illness disease. She said:

“My mom could no longer be able to handle a lot of things including her self-care. I need to prepare and do

almost all the task for her. If I did not help her, I'm sure she will suffer a lot...It had happened one day when I am a
little bit late to change my mom’s diaper. It very smelly. What was more upsetting was when my mom's buttock

became red and itching. Imagine if we were in her situation...We must suffer from the pain and it must be
uncomfortable. It's the same for her. Even though I'm not a very good person, but I cannot bear to see her condition

like that. For that, I will make sure her hygiene and comfort is maintained regularly. I think it is the best way that I
can help her.”

4. Discussion

The family is the main thing in building a harmonious society and cultivating compassion for each other. A nice
family will create a society that is good and noble. Therefore, in doing something good, the family is the most
important group that needs attention first. For a family with allegations such as one of the family members is
suffering from terminal diseases, the role of a healthy family member is crucial in providing the maximum help as
their loved ones are faced with difficulties and excruciation. Despite challenges in handling the situation, providing
the care for the patients can also be rewarding. This study highlighted the benefits and rewarding experience of
family involvement in providing the care of an older person with a terminal illness in two superordinate themes,
namely "strengthen family bonds" and "improved sense of self-worth." The emerged overall themes and its
relationship to quality of life concerning caring for the older person with terminal illnesses is shown in figure 1.

The first superordinate theme emerged from the study is that the caregivers who were actively providing the care
for the patient can result in strengthening the relationship bonding between their family members. This finding
provides the strongest evidence that sometimes families can be brought closer together when someone is in need of
care. The unique strengths of family members that result from the care of the patient are their intimate and
prolonged relationships with patients, their influence on patient need and their desire to help their loved one. The
consideration of caring for patients with a terminal illness can bring into reality the love between caregivers and the
patients. It is because, when taking care of the patients the caregivers will be able to provide the support through
touching, caressing, massaging gently and hugging the patient's body. As a result, they will be able to provide
excitement and cheer them up through words and behavior. In a study by Inagaki and Eisenberger (2012), they have
explained that providing the support such as holding a partner's arm while they encounter physical pain had led to
140 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143

significantly more activity in the reward-related neural region in the brain which is ventral striatum and septal area.
They found that more prominent actions in each of these regions while providing the support activity was associated
with greater self-reported on the support giving effectiveness and social connection. Meanwhile, Toljamo et al.
(2012) found in their study that the family caregiver's good relationship with the recipient care scores improved
during the 6-month study period as it becomes the best prediction in positive value of caregiving. Similarly, Momtaz
et al. (2014), found that the practice of giving support to other people can result in stronger connections with others
and increase the self-esteem of caregivers.

Apart from that, most of the family members want to help and feel a sense of duty to care for a loved one. Each
of the family members can contribute to providing the care demands of the patient by managing caregiving tasks
such as one person can take care of medical responsibilities, another with finance and bills, another with groceries
and errands, another with self-care needed and others. The involvement and recognition of the potential
contributions of other family members may help to minimize the capacity to carry out the full range of care
activities on the primary caregiver. This kind of situation will able to create a value of the responsibilities as well as
promote the growth of other individuals among their family members. This finding was consistent with another
study by Mortazavi et al. (2015) who reported that one of the most supportive resources to take care of the older
person is the cooperation and contribution of other family members. They found that it was crucial to increase the
caregiver's ability to provide the care at the maximum level and create a suitable opportunity for the primary
caregiver to manage their life affairs in most efficient ways. Another study by Thomas (2009) also found that
providing the support for the care recipient can bolster role identity that may promote older adults' well-being. This
finding can provide a new point of view for the health care professionals, especially occupational therapy so that
they can come out with a standardized assessment to assess the family members' capabilities and willingness to
provide the care for the older person with a terminal illness. Therefore, the healthcare professional can provide the
knowledge and skill to the family members whom those most in need in managing their task so that they can deliver
a proper care for the older person with a terminal illness.

Moreover, the family relationships also become closer resulting from frequent gathering together and having
more open communication and in-depth discussion of the issues that arise in providing the best care for the older
person with a terminal illness. According to Mustaffa et al. (2013), family strength refers to a family's capacity to
self-repair and how a family will master challenging situations. On the way to overcome the difficult situation,
communication and interaction with the whole family members is one of the most effective ways. The family
communication is about sharing information in the form of verbal and non-verbal cues (Benharoon, 2013). During
the communication, not only the words are included, but other components such as facial expression, eye contact,
body language, the tone of speech and posture also becomes part of the relevant cues that is important for the person
to understand their family member's point of view. Through family communication, they can share their feelings,
express love and admiration, exchange ideas, increase understanding of others and strengthen the connection with
one another. A study by Holmberg (2006) found that family members can prove their maximum problem-solving
ability as they learned through everyday conversation and participation in the care of the terminal illness patient. By
having the conversation it can enable all the family members to be involved as well as allowing them to provide the
best solution that they can choose. Such discussion benefits families and eventually enhance the quality of life, not
only for the patients but also their family caregivers. Since that, the healthcare professional can work together with
other community resources in helping families become more knowledgeable about the effects of the terminal illness
on the family, provide the useful guideline to manage conflict and enhance communication among family members.
 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143 141

INTERNAL BENEFITS EXTERNAL BENEFITS

Increased self-worth Strengthen family bonds

(Feel ‘useful,’ fulfilling the cultural, (Strong bonding between caregiver and

moral and religious duties/obligations, patient, good relationship with family

filial piety, becoming a ‘better person') members, sharing responsibilities)

Increased Quality of life

Fig.1. Relationship between increased self-worth and family bond with the quality of life amongst carers

The second superordinate theme emerged that indicates the quality of life in relation to caring for the older person
with a terminal illness was "improved sense of self-worth". The stressful setting of caring for the patient can often be
delicate and difficult, resulting in easy for tempers to flare and patience to run thin. It is important for a caregiver to
understand that patient with the illness is not always in complete control of their psychological status that will result
from inappropriate actions or behavior. As founded in a study by Petkova et al. (2010), they said that patients who
experienced cancer-related pain reported high levels of anger, depression and anxiety. Their result shows that cancer
patients were perceived emotional distress due to the pain. Regarding patient's mood state, patience is the most
important virtue a caregiver can have in the circumstances like these. As the time goes by the caregiver often can
educate themselves to become a more patient person. Furthermore, caregivers who have the opportunities to take
care the older person with a terminal illness can influence themselves in having a better understanding of other
people's problems resulting from their loved one illness. By accomplishing in caring for the patients, they might find
that caregiving enriches their life. The caregiver may learn about inner strengths and abilities that they did not even
know they had and found a greater sense of purpose for their life. It was resulting from the achievements in dealing
with the challenges and barriers while providing the care for the patients. These findings are consistent with the
previous outcome of the study by Kuuppelomaki et al. (2004) that found that the family carers derived their sources
of satisfaction while providing the care of the older relatives in the sense of being able to overcome difficulties and
challenges of caring. As a result, it gives a new insight in their personal growth and development.

Meanwhile, parents who were involved in providing the care for the older person with a terminal illness can
indirectly be a positive role model for their children. The parents can pass on the positive values they wish for their
children to adopt so that they become the adults they would like them to be. The previous study also revealed that
the parent who contributes in providing the care for aging family members may serve as positive role models that
foster feelings of responsibility in the younger generation (Piercy & Chapman, 2001). Apart from that, the findings
also found that the caregivers are able to achieve a greater own sense of well-being that resulted from their
142 Siti Norehan Ab Ghani et al. / Procedia - Social and Behavioral Sciences 234 (2016) 135 – 143

compassion to help the person who is in a difficult situation. Having the right attitude of both genuine sympathy for
others suffering and the will to help reduce their pain can eventually create their serenity and increase their inner
strength.

As discussed above, the effectiveness of family support cannot be overstated. The vast majority of the caregivers
reported the positive indicators that eventually increase their quality of life as a result of caring for the older person
with a terminal illness. These findings will become the positive indicators and need to be highlighted to improve
public awareness regarding family involvement in terminal illness care.

The limitation of this study was the relatively small sample size. For this reason, these findings cannot be
generalized to all populations of the caregiver in providing the care for the older person with a terminal illness based
on this study alone. Therefore, it is suggested that further studies in this area are conducted with larger sample size.
It could give more in-depth experiences of the family caregivers in providing the care for the older person with a
terminal illness.

5. Conclusion and implication of the study

In this study, strengthening family bonds and improved sense of self-worth were found to have the relationship
with the quality of life amongst family caregivers of older person with a terminal illness. In other words, how
caregivers appraised their benefits of caregiving experiences have positively influenced their quality of life. The
findings of this study contribute to the growing body of knowledge regarding the quality of life amongst family
caregivers who care for older persons with a terminal illness by presenting detail life experiences in providing the
care for the patient.

The implication of this study highlights the need for the family caregivers to be involved as part of the health
care team in providing the maximum care for the older person with terminal illnesses until the end of their life.
There should also be a requirement for the health care professionals to engage the family caregivers' participant in
taking care of the patient.

Acknowledgements

The authors wish to thank the Research Management Centre of UiTM and the Ministry of Education for the
permission to publish this paper and their invaluable support towards this study. The authors would also like to
acknowledge the caregivers who have participated in this study. This study was funded by the Fundamental
Research Grant Scheme [FRGS 600-RMI/FRGS 5/3 (29/2014)] under the Ministry of Education Malaysia.

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Analisis Jurnal 3

1. Profil Penelitian

Judul: Quality of Life amongst Family Caregivers of Older Persons with Terminal Illnesses (Kualitas
Hidup di antara Pengasuh Keluarga Orang Tua dengan Penyakit Terminal)

Kata Kunci: Interdependence; older people; quality of life; interpretative phenomenological analysis

Pengarang: Siti Norehan Ab Ghani, Husna Ahmad Ainuddin*, Akehsan Dahlan

Tanggal Publikasi: 27 February 2016

Kesimpulan: Perubahan dalam perawatan kesehatan dan kemajuan dalam kedokteran modern telah
berkontribusi pada umur panjang. Selanjutnya, ada peningkatan jumlah populasi yang lebih tua di Malaysia.
Misalnya, di Malaysia, populasi yang lebih tua adalah Dengan bertambahnya usia, mereka berisiko lebih
tinggi menderita penyakit terminal dan menghadapi berbagai cacat. Penyakit terminal seperti neoplasma
ganas, jantung, dan kondisi paru-paru diharapkan menjadi masalah medis yang signifikan di antara populasi
ini. Penyakit terminal didefinisikan sebagai penyakit yang aktif dan progresif yang tidak dapat disembuhkan
atau tidak ada harapan pemulihan pengobatan (Gonorazky, 2011). Sementara itu, sebuah studi oleh Simona
et al. (2014) juga menemukan bahwa pasien dengan penyakit kronis memiliki dampak negatif pada kualitas
hidup mereka. Karena memburuknya kondisi kesehatan, orang yang lebih tua akan mencapai titik di mana
mereka perlu mendapatkan dukungan dan bantuan dari anggota keluarga mereka untuk menyelesaikan
kegiatan rutin sehari-hari mereka. Anggota keluarga seperti pasangan, anak-anak dan saudara kandung
sering terlibat dalam memberikan perawatan seperti itu. Keterlibatan keluarga dalam menyediakan
perawatan untuk orang tua dengan penyakit terminal kemungkinan akan memaksimalkan kualitas hidup
orang tua dengan penyakit terminal.

2. Critical Aprasial:

A. Why was study done?

Penelitian ini bertujuan untuk mengidentifikasi konstruksi kualitas hidup di antara pengasuh keluarga yang
merawat orang tua dengan penyakit terminal.

Peneliti juga sudah menuliskan tujuannya dengan jelas, dan kata kunci yang digunakan sudah tepat oleh
peneliti,serta kutipan yang diambil jelas sumbernya.

B. What is sample of size?

Sepuluh responden yang berpartisipasi dalam penelitian ini adalah delapan wanita dan dua pria. Rentang
usia pengasuh adalah antara 18-55 tahun. Status pekerjaan pengasuh masing-masing adalah wiraswasta,
pelajar dan ibu rumah tangga. Selain itu, hubungan pengasuh dengan orang tua dengan penyakit terminal
adalah anak perempuan, cucu dan pasangan.

Metode: Studi ini disetujui oleh komite etika di Universiti Teknologi MARA (UiTM) untuk perlindungan
subyek manusia dan dilakukan di Selangor. Kami menggunakan convenience sampling untuk merekrut
pengasuh berusia lebih dari 18 tahun dan yang memberikan perawatan paling untuk orang tua dengan
penyakit terminal. Sebanyak sepuluh pengasuh direkrut untuk penelitian ini.

C. How were the data analyzed?

Data dirangkum melalui teknik wawancara. Wawancara semi-terstruktur mendalam dilakukan dengan
menggunakan panduan wawancara yang terdiri dari pertanyaan terbuka sehingga responden dapat
menjawabnya dengan kata-kata mereka. Hasilnya, peneliti dapat mengetahui lebih banyak tentang
pengalaman orang. Para peneliti merancang panduan wawancara berdasarkan model Kawa (Iwama et al.
2009). Model Kawa diciptakan oleh ahli terapi okupasi Jepang, Michael K. Iwama pada 1990-an. Durasi
wawancara adalah sekitar 30 hingga 45 menit untuk setiap responden.

Transkrip wawancara dianalisis menggunakan Interpretative Phenomenological Analysis (IPA) seperti yang
dijelaskan oleh Smith et al. (2009).

D. Are measurement of major variable valid and reliable?

Instrument yang digunakan untuk penelitian variable sudah valid dan tepat dikarenakan pada penelitian ini
sudah menggunakan metode yang sesuai.

E. Were there any untoward event during the conduct of the study?

Persetujuan diperoleh dari instansi terkait studi. Seorang peneliti menjelaskan penelitian ini kepada peserta
dan informed concent tertulis telah diperoleh sebelumnya.

Penelitian ini melibatkan pemeriksaan mendalam dari pengalaman dan perspektif pengasuh keluarga yang
merawat orang yang lebih tua dengan penyakit terminal. Karena penelitian ini bertujuan untuk
mengeksplorasi secara terperinci dan memahami tentang pengalaman hidup orang, oleh karena itu,
pendekatan fenomenologi digunakan dalam melakukan penelitian ini karena sangat cocok dengan tujuan
penelitian.

F. What does this research mean for clinical practice?

Dalam studi ini, memperkuat ikatan keluarga dan meningkatkan harga diri ditemukan memiliki hubungan
dengan kualitas hidup di antara pengasuh keluarga orang tua dengan penyakit terminal. Dengan kata lain,
bagaimana pengasuh menilai manfaat mereka dari pengalaman pengasuhan telah secara positif
mempengaruhi kualitas hidup mereka. Temuan penelitian ini berkontribusi pada pertumbuhan pengetahuan
tentang kualitas hidup di antara pengasuh keluarga yang merawat orang tua dengan penyakit terminal
dengan menghadirkan detail pengalaman hidup dalam memberikan perawatan untuk pasien.

Implikasi dari penelitian ini menggarisbawahi perlunya pengasuh keluarga untuk terlibat sebagai bagian dari
tim perawatan kesehatan dalam memberikan perawatan maksimum untuk orang tua dengan penyakit
terminal sampai akhir hidup mereka. Juga harus ada persyaratan bagi profesional perawatan kesehatan untuk
melibatkan peserta pengasuh keluarga dalam merawat pasien.
Jurnal 4

JOURNAL OF PALLIATIVE MEDICINE

Volume 7, Number 6, 2004

© Mary Ann Liebert, Inc.

Terminal Care for Persons with Advanced Dementia in the

Nursing Home and Home Care Settings

SUSAN L. MITCHELL, M.D., M.P.H., FRCPC,1,2 JOHN N. MORRIS, Ph.D.1 PIL S. PARK,
Ph.D.,3 and BRANT E. FRIES, Ph.D3–5

ABSTRACT
Background: Many older persons with advanced dementia receive terminal care in nursing homes,
others remain in the community with home care services.
Objectives: To describe and compare the end-of-life experience of persons dying with ad- vanced
dementia in the nursing home and home care settings.
Design: Retrospective cohort study.
Setting/Subjects: Persons 65 years or older with advanced dementia who died within 1 year of
admission to either a nursing home in Michigan between July 1, 1998 until December 31, 2000 (n =
2730), or the state’s publicly funded home and community-based services from Oc- tober 1, 1998 until
December 31, 2001 (n = 290).
Measurements: Data were derived from the Minimum Data Set (MDS)-Nursing home Ver- sion 2.0
for the institutionalized sample, and the MDS-Home Care for the community-based sample. Variables
from the MDS assessment completed within 180 days of death were used to describe the end-of-life
experiences of these two groups.
Results: Nursing home residents dying with advanced dementia were older, had greater functional
impairment, and more behavior problems compared to home care clients. Few sub- jects in the
nursing home (10.3%) and home care (15.6%) cohorts were perceived to have less than 6 months to
live. Only 5.7% of nursing home residents and 10.7% home care clients were referred to hospice.
Hospitalizations were frequent: nursing home, 43.7%; home care, 31.5%. Pain and shortness of breath
were common in both settings. End-of-life variables indepen- dently associated with nursing home
versus home care included: hospice (adjusted odds ra- tio [AOR] 0.26, 95% confidence interval [CI],
0.16–0.43), life expectancy less than 6 months (AOR 0.31; 95% CI, 0.20–0.48), advance directives
(AOR, 1.48; 95% CI, 1.11–1.96), pain (AOR,
0.38; 95% CI, 0.29–0.50), shortness of breath (AOR 0.20; 95% CI (0.13-0.28), and oxygen ther-
apy (AOR, 2.47; 95% CI, 1.51–4.05).
Conclusions: Persons dying with advanced dementia admitted to nursing homes have dif- ferent
characteristics compared to those admitted to home care services. Their end-of-life ex- periences also
differ in these two sites of care. However, palliative care was not optimal in either setting.
 1
Hebrew Rehabilitation Center for Aged Research and Training Institute, Boston, Massachusetts.
2
The Department of Medicine of Beth Israel Deaconess Medical Center, and Division on Aging, Harvard Medical School,
Boston, Massachusetts.
3
Institute of Gerontology and 4School of Public Health, University of Michigan, 5Ann Arbor VA Medical Center, Ann Arbor,
Michigan.
808
INTRODUCTION
Y THE YEAR 2030, more than 13 million Amer- icans
B will suffer with dementia, a progressive and incurable
condition.1 Recent work has shown that the site of
death has important implications for the quality of
terminal care.2 Little is known about the end-of-life
experience of persons dying with advanced dementia in
different care set-
tings.
The majority of individuals with advanced de- mentia
receive their end-of-life care in nursing homes. 3–6
However, a substantial proportion of terminal care in
dementia is provided in the com- munity with home
health services.3–6 Many older persons prefer to stay at
home as long as possi- ble near the end-of-life. 7,8
Patients’ preferences for the site of terminal care shift
toward institu- tionalization when they feel that they
can no longer receive adequate palliation in their
homes and they are too burdensome for their families. 8
The unique care requirements in end-stage de- mentia
can be particularly challenging for infor- mal
caregivers.6
To promote informed decision-making regard- ing the
site of terminal care, the experience of persons dying
with advanced dementia across various settings needs
to be better described. Therefore, the objective of this
study was to ex- amine and contrast the end-of-life
experience of severely demented individuals who died
within one year of admission to either a nursing home
or a community-based home care service. In or- der to
achieve this objective, we conducted a ret- rospective
study using data from the Minimum Data Set (MDS). 9–13
The MDS is a standardized, comprehensive, assessment
instrument that col- lects data on a broad range issues
pertinent to end-of-life care including: burdensome
symp- toms, advance directives, health service utiliza-
tion, and treatments. In Michigan, the MDS is mandated
for use in all nursing homes9–12 as well as by the state’s
publicly funded home care ser- vices, 13 providing a
unique opportunity to de- scribe terminal care in these
two settings.
METHODS
Data sources
The study was exempt from review by the Har- vard
Medical School Office for Subject Protection.
respectively.16 The CPS is a validated measure of
cognitive impairment that uses five MDS vari- ables to
group individuals into seven hierarchi- cal cognitive
performance categories (0–6).14 A CPS of 5 or 6
corresponds to a Mini Mental Sta- tus Examination score
of 5 or less.
Two data sources from the state of Michigan were used
to identify and describe the study popula- tion: (1) The
Minimum Data Set-Nursing Home (MDS-NH) Version 2.0
for the institutionalized sample 9–12 and (2) the MDS-
Home Care (MDS- HC) for the community-based
sample.13
The MDS is mandated for use in all nursing homes
(MDS-NH) nationwide.9–12 As well, Michi- gan has
mandated the use of a compatible as- sessment system,
the MDS-HC,13 for use in its Michigan Choice Waiver for
the Elderly and Dis- abled program. The waiver program
provides a wide range of home care agency-based
services to persons who would otherwise be eligible for
nursing home care. The definitions and coding
conventions for the variables used in this study were
identical in the MDS-NH and MDS-HC in- struments,
unless otherwise noted. Data were collected by trained
nurses in both settings. In- terrater reliabilities for all
the MDS items are ad- equate for research purposes. 9–12
In the nursing home, full MDS-NH assessments are
completed at the time of admission, annually, and
whenever there is a significant change in health status.
An abbreviated version of the MDS is completed on a
quarterly basis for clinically stable patients. In the
home care program, full MDS-HC assess- ments are
performed quarterly.
In this study, MDS-NH data were collected be-
tween July 1, 1998 and December 31, 2000 from nursing
home residents living in all facilities in Michigan (n =
121,129 residents, n = 458 facili- ties). The MDS-HC
data were collected between October 1, 1998 and
December 31, 2001 from all persons enrolled in the
state’s waiver home care management programs (n =
23,095 individuals).
Population
Persons aged 65 years or older with advanced
dementia who died within 12 months of admis- sion to
either a nursing home or home care pro- gram were
identified. Only patients who had a full MDS assessment
completed within 180 days of death were included.
Advanced dementia was defined as having a diagnosis of
dementia (Alz- heimer’s disease or other causes) and a
Cognitive Performance Score (CPS) of 5 or 6 on the MDS
as- sessment completed at the time of admission to the
nursing home or home care program. 11 The Alzheimer’s
disease and dementia diagnoses have been used for
epidemiological research,15 and have intraclass
coefficients of 0.89 and 0.79,
We wanted to identify older persons with ad- vanced
dementia who died within 12 months of admission to
either a nursing home or home care program. Therefore,
subjects who had MDS infor- mation available 12 months
after their admission were excluded. For the remaining
subjects, death information was obtained from the
Michigan Death Registry. The following variables were
used to merge the death information with the MDS-NH
and MDS-HC databases: first name, middle name, last
name, gender, birth date, race, and social se- curity
number. If a complete match was found and the death
date was within 12 months of the sub- jects’ admission
date, they were included in the study. If a complete
match was not found or if the subjects’ death date was
beyond 12 months of their admission date, then they
were excluded.
Definition of variables
Demographic data, functional status, and the presence
of other common terminal conditions were derived from
the MDS assessments com- pleted at the time of
admission to either the nurs- ing home or home care
program. Demographic data included the following: age,
days between the admission and death date,
race/ethnicity (white versus other), and gender.
Functional status was quantified using the MDS Activity of
Daily Living (ADL) Long Form Scale (0–28). 17 The scale
mea- sures functional ability in seven domains. A score of
28 represents complete dependence in all seven
domains. The presence of behavior problems (wandering
or physical agitation) on admission was also determined.
Patients with diagnoses of cancer (MDS does not
distinguish the type of can- cer), congestive heart failure
and chronic obstruc- tive pulmonary disease were
identified.
In order to describe the dying experience in ad-
vanced dementia, we selected outcome variables from
the MDS thought, a priori, to represent im- portant
features of end-of-life care based on our knowledge of
the literature (2–5,18) and clinical experience. These
data were derived from the last MDS assessment
completed prior to death, un- less otherwise noted.
Variables were categorized as follows: health services
utilization, advance
care planning, nonpalliative interventions, signs and
symptoms, and other treatments. The num- ber of days
between the date of the last MDS as- sessment and
death was also determined.
In the category of health services utilization, we
examined whether or not subjects experienced a
hospitalization or emergency room visit within the 90
days prior to their last MDS assessment. Subjects
referred to hospice at any time while be- ing cared for
at the nursing home or at home were identified.
In the area of advance care planning, we ex- amined
whether or not the subjects had an ad- vance directive.
The MDS-HC does not include data on specific advance
directives. Therefore, home care subjects were
considered to have an advance directive if the response
to the following MDS-HC item was positive: “Does the
patient have an advance directive (e.g., request for do-
not-hospitalize).” Nursing home residents were
considered to have an advance directive if they had
either a request not to be resuscitated (DNR) or
hospitalized (DNH) recorded on the MDS-NH.
Nonpalliative interventions included the use of feeding
tubes and intravenous therapy (fluids or medications).
Other treatments included oxygen therapy (intermittent
or continuous) during the
14 days prior to the last assessment and in- dwelling
bladder catheters. We also examined whether or not
subjects received any of the fol- lowing medications in
the 7 days prior to their last assessment:
antipsychotics, antianxiety agents and antidepressants.
Signs and symptoms in- cluded pneumonia, pain (daily
or almost daily), shortness of breath, and pressure
ulcers (with at least some loss of skin integrity). Finally,
the pres- ence of chewing or swallowing difficulties
were determined.
Statistical analysis
All analyses were performed using SAS Ver- sion 8.1
for Windows (19). In order to compare the end-of-life
experience in advanced dementia in the nursing home
and at home, care setting was the main independent
variable in all analyses. Bi- variate analyses were
conducted comparing sub- ject characteristics and end-
of-life outcomes in these two settings. µ2-Tests and
two-sample t tests were used to analyze dichotomous
and continu- ous variables, respectively. ADL score was
cate- gorized into three groups based on terciles; 0–20
(referent), 21–27, and 28.
 End-of-life outcomes that differed significantly (p <
these subjects, we included the 2730 (78%) nurs- ing
0.05) between the nursing home and home care settings
home residents and 290 (92%) of home care clients who
in the bivariate analyses, were selected for multivariate
had full MDS assessments 180 days prior to death. The
analysis using logistic regression. Age, race, gender,
nursing home residents ex- cluded from the study
functional status, ethnicity, cog- nitive status (CPS score
because they did not have a full MDS assessment
of 6 versus 5), and days be- tween admission and death
completed within 180 days of death (n = 753, 12%) did
were included as co- variates in all multivariate models.
not differ significantly from those included in the study
Other potential confounders were included as covariates
with respect to the following baseline characteristics:
in indi- vidual models depending on the outcome being
age, gen- der, ADL score, CPS, days between admission
examined. Variables were only considered as po- tential
and death, and other potentially terminal diag- noses
confounders if the bivariate association be- tween the
(i.e., cancer, chronic obstructive pulmonary disease,
location of care and the individual vari- able differed by a
and congestive heart failure). No subjects were
p value Š 0.10. Diagnoses or conditions included as
included in both the nursing home and home care
covariates in particular models included (dependent
cohorts. The mean number of days be- tween the last
variables indicated in parentheses): pneumonia and
MDS assessment prior to death and death did not differ
chronic obstructive pulmonary disease (hospitalization and
significantly between the nursing home and home care
shortness of breath models), pain and shortness of breath
cohorts (51.0 ± [SD] 50.0 versus 54.7 ± [SD] 35.5 days, p
(hospice referral), chewing or swallowing prob- lems (tube
= 0.11).
feeding), shortness of breath (oxygen therapy, chronic
At the time of admission, nursing home resi- dents
obstructive lung disease), and be- havior problems
with advanced dementia were more likely to have the
(antianxiety medication).
following characteristics compared to home care
clients: older age, fewer days between admission and
death, total functional depen- dence, white race
RESULTS (versus non-white), a CPS score of 6 (versus 5), and
behavior problems. Gender did not differ between the
two groups (Table 1).
Subject characteristics
There were 3483 nursing home residents and 314 Health services utilization
home care clients with advanced dementia who died The frequencies and bivariate analyses com- paring
within 1 year of admission. Among the end-of-life characteristics of older per-

TABLE 1. SUBJECT CHARACTERISTICS

Characteristic Home care (n = 290) Nursing home (n = p

2730) value
Age on admission (mean years ± SD) 81.7 ± 7.4 83.4 ± 7.1 0.01
Female (%) 65.0 63.0 0.32
White (%) 72.9 82.8 <0.001
ADL scorea (level of dependence)
0–20 70.2 24.3 <0.001
21–27 23.1 36.2 <0.001
28 (total dependence) 6.7 39.3 <0.001
Days between death and admission (mean ± SD) 306.24 ± 301.7 173.7 ± 286.4 <0.001
Cognitive Performance Scoreb = 6 (versus 5) (%) 34.6 57.1 <0.001
Behavior problems (%) 10.6 31.1 <0.001
Other diagnoses
Cancer (%) 13.7 11.4 0.23
Chronic obstructive pulmonary disease (%) 11.6 15.6 0.07
Congestive heart failure (%) 29.6 29.6 0.94
a
ADL, activities of daily living. Total ADL score is the sum of scores in each of 7 domains of function including bed mobility,
dressing, toileting, transfer, eating, grooming, and locomotion. Each is scored on a 5 point scale (0, in- dependent; 1,
supervision; 2, limited assistance; 3, extensive assistance; and 4, total dependence).
b
Cognitive Performance Score of 6 is defined as very severe cognitive impairment, a score of 5 is defined as severe cognitive
impairment.

SD, standard deviation.

sons with advanced dementia in the nursing home and at
home are presented in Table 2. Table 3 shows the
results of the multivariate analyses. Hospital admissions
just prior to death were common in both groups, but
more frequent among the nursing home cohort (43.7%
versus 31.5%, p < 0.001), Hospitalization rates did not
differ between the two groups after multivariate
adjustment. Few subjects dying with advanced dementia
were referred to hospice. Hospice re- ferral was
significantly lower among nursing home residents
compared to home care clients (5.7% versus 13.1%, p <
0.001), even after adjust- ing for potential confounders.
Emergency room
visits did not differ between the two groups.
These associations remained significant after
multivariate adjustment.
Nonpalliative interventions
Among nursing home residents with advanced
dementia, 27.2% died with a feeding tube, com- pared
to 11.9% of subjects in the home care pro- gram (p <
0.001). However, the majority of tube- fed subjects had
feeding tubes at the time of admission to the nursing
home (83%) and home care programs (78%). Few
subjects in the nursing home (3.6%) and home care
cohorts (2.8%) were reported to receive intravenous
therapy just prior to the death (p = 0.52)

Advance care planning

A higher proportion of nursing home residents had
advance directives compared to subjects receiving
home care (57.4% versus 39.4%, p < 0.001). Within 180
days of death, few subjects in either cohort were
perceived by their caregivers as having life expectancy
of less than 6 months, however the proportion of
subjects with this poor prognosis was significantly lower
among nursing home residents (10.3% versus 15.6%, p <
0.02).
Signs and symptoms
It was common for older persons with ad- vanced
dementia to suffer with distressing signs and symptoms
near the end-of-life in both care settings. However,
compared to home care clients, subjects in the nursing
home were re- ported to have less pain (37.1 % versus
53.4%, p < 0.001) and shortness of breath (12.7% versus
29.7%, p < 0.001), even after multivariate adjust- ment:
pain (adjusted odds ratio [AOR], 0.38; 95%

TABLE 2. BIVARIATE ANALYSIS

Characteristic (%) Home care (n = Nursing home (n = p

290) 2730) value
Health services utilization
Hospitalization within the previous 90 days 31.5 43.7 <0.001
Emergency department visit within the previous 90 days 13.1 11.4 0.41
Hospice referral (any time prior death) 13.1 5.7 <0.001
Advance care planning
Advance directive 39.4 57.4 <0.001
Perceived life expectancy <6 months 15.6 10.3 0.02
Nonpalliative interventions
Feeding tube 11.9 27.2 <0.001
Intravenous therapy 2.8 3.6 0.52
Signs and symptoms
Pneumonia 5.2 16.9 <0.001
Daily or almost daily pain 53.4 37.1 <0.001
Shortness of breath 29.7 12.7 <0.001
Pressure ulcers 19.7 35.0 <0.001
Depression 22.3 20.5 0.49
Other treatments
Oxygen therapy 12.5 24.4 <0.001
Foley catheter 15.8 29.4 <0.001
Antipsychotic medications 19.7 22.7 0.35
Antianxiety medications 20.7 15.9 0.05
Antidepressant medications 24.7 21.5 0.21

Characteristics on the last Minimum Data Set assessment prior to death of older persons with advanced dementia cared for in
a nursing home (n = 2730) versus at home (n = 290).
 TABLE 3. MULTIVARIATE ANALYSIS
founders (AOR, 1.46; 95% CI, 1.04–2.03). Pneu-
Characteristic Adjusted ORa monia was also significantly more likely among
the nursing home residents. Depression was
Health services utilization common in both care settings, affecting approxi-
mately one fifth of all subjects. The likelihood
Hospitalization in the 1.30 (0.98, 1.74)b
previous 90 days c of depression did not differ between the two
Hospice referral (any 0.26 (0.16, 0.43) pressure ulcers in both the nursing home (35.0%) and
time prior to death) home care (19.7%) settings. Pres- sure ulcers were
more likely among the nursing home residents after
Advance care planning adjusting for potential con-
Advance directive 1.48 (1.11, 1.96)

Perceived life expectancy 0.31 (0.20, 0.48)

<6 months Nonpalliative
interventions

Feeding tube 1.70 (1.01, 2.84)d

Signs and symptoms
Daily or almost daily pain 0.38 (0.29, 0.50)

Shortness of breath 0.20 (0.13, 0.28)b

Pneumonia 2.86 (1.62, 5.04)

Pressure ulcers 1.46 (1.04, 2.03)
Other treatments

Oxygen therapy 2.47 (1.51, 4.05)e

Foley catheter 1.06 (0.73, 1.53)

Antianxiety medications 0.63 (0.44, 0.89)f

a
All odds ratios are adjusted for age, race (white ver- sus
non-white), activities of daily living score on admis- sion, days
between admission and death, and Cognitive Performance
Score (6 versus 5).
b
Hospitalization and shortness of breath models also
adjusted for presence of pneumonia and chronic ob- structive
pulmonary disease.
c
Hospice models also adjusted for pain and shortness of
breath.
d
Feeding tube model also adjusted for the presence of
chewing and swallowing problems.
e
Oxygen therapy model also adjusted for the presence of
shortness of breath and chronic obstructive pulmonary
disease.
f
Antianxiety medication model also adjusted for pres- ence
of behavior problems.
Characteristics on the last Minimum Data Set assess- ment
prior to death of older persons with advanced de- mentia
cared for in a nursing home (n = 2730) versus at home (n =
290).

confidence interval [CI], 0.29–0.50); shortness of breath

(AOR, 0.20; 95% CI, 0.13–0.28). In order to explore the
possibility that the nursing home co- hort had less pain
due to greater functional dis- ability (i.e., reduced
mobility resulting in less op- portunity to elicit pain), a
stratified analysis was conducted. Pain was significantly
more likely in the home care cohort in all three strata
of ADL score.
Many persons with advanced dementia died with
groups.

Other treatments
Subjects were more likely to receive oxygen therapy
if they resided in the nursing home (24.4% versus 12.5%,
p < 0.001), even after ad- justing for the presence of
shortness of breath (AOR, 2.47; 95% CI, 1.51–4.05).
Although short-
ness of breath was more common in the home care
cohort, this group received less oxygen ther- apy. In
addition, nursing home residents were less likely to
receive antianxiety medications compared to the home
care clients, even after ad- justing for behavior
problems. Other treatments, including the use of
antipsychotics medications, antidepressants and Foley
catheters, did not sig- nificantly differ between the two
groups.

DISCUSSION
This study reports the end-of-life experience of older
persons with advanced dementia who died within 1 year
of admission to a nursing home or home care program.
Several findings are notable. First, the characteristics of
persons admitted to these two care settings differ such
that severely demented persons admitted to nursing
homes have more functional disability, behavior prob-
lems, and feeding tubes compared to those who remain
at home. Second, the palliative care pro- vided to this
population is not optimal in either setting: most patients
are not recognized as dying, hospice referrals are
infrequent, and hos- pitalizations, burdensome
treatments, and poten- tially treatable distressing
symptoms are com- mon just prior to death. Finally,
several palliative care outcomes in advanced dementia
may be more favorable in the nursing home. Reported
pain and shortness of breath were less common in the
nursing home subjects compared to home care cohort,
whereas advance directives and the use of oxygen
therapy were more common in the nursing home
setting.
 Few previous studies have described the end- of-life
experience of older persons with advanced dementia in
various care settings.3–6,18,20,21 Our study corroborates
earlier observations that per- sons with advanced
dementia admitted to nurs- ing homes have a greater
skilled nursing needs compared to those who are
managed at home. In particular, behavior problems and
functional dis- ability are consistently associated with
institu- tionalization at all stages of dementia.5,22
Our study further supports growing expert opinion and
empiric data suggesting that palliative care for advanced
dementia is sub-optimal across all care settings including
nursing homes,4,5,18 hospitals,20,21 assisted
living/residential facilities, and home.3,5,6 Advanced
4
dementia is often not recognized as a terminal
illness.18,20,21 Moreover, it is uncommon for persons
dying with end-stage dementia to be referred to
hospice.5,23–25 The smaller proportion of hospice
referrals in the nursing home may further reflect
practical barri- ers related to contracting hospice
services in nurs- ing facilities, or the perception by
nursing home staff that additional palliative care
expertise is not needed. Hospice services in nursing
homes have been shown to improve pain management,
pro- mote advance care planning, and reduce the use of
invasive treatments.26,27 Moreover, older per- sons
receiving home hospice have been shown to have a
better dying experience compared to those receiving
terminal care in a nursing home or at home with nursing
services.2
Many family members and health care pro- viders
feel palliation should be the primary goal of care for
persons with advanced dementia.28 We have shown, as
have others, that potentially treatable distressing
symptoms are common among persons dying with
advanced demen- tia.4–6,18 Our finding that 53.4% of
home care clients had daily or almost daily pain, is
similar to the proportion reported by family caregivers
of persons dying with dementia (62.6%).6 Pain is often
underreported in advanced dementia when assessed
with standard pain scales and MDS items. 29,30
Therefore, the number of subjects suf- fering with pain
may even be higher than re- ported. It is notable that
nursing home residents were more likely to receive
oxygen therapy and had less reported shortness of
breath compared to the home care cohort. Oxygen
therapy would be considered reasonable treatment to
manage terminal dyspnea associated with hypoxemia.
As
such, our finding supports earlier work suggest- ing that
palliative treatments may be more read- ily available in
an institutionalized setting.4 The avoidance of
burdensome hospital admissions is another theoretical
advantage of the nursing homes’ ability to provide the
24-hour care. We found, as have others3–6,20,21 that
hospitalizations are very common for persons with
advanced de- mentia, regardless of care setting.
This study has some limitations that deserve
comment. First, our data describe the patients’ ex-
perience in the primary setting where they were cared
for near the end-of-life, but not necessarily at the
location of death. Second, there may be some
inaccuracies in the recording MDS data. The potential
for misclassification is minimized by uniform data
collection by trained staff and ex- plicitly defined
variables in a coding manual. While most
misclassification is likely to be non- differential
between the home care and nursing home settings,
there may be some reporting bias of symptoms in our
two cohorts. For example, nursing home staff may be
more reluctant to re- port pain, one of several MDS
quality indicators used to rate nursing homes
nationwide. Third, al- though we examined a well-
defined cohort with advanced dementia and used
multivariate tech- niques, we may not have adjusted
for all the clin- ical differences between the home care
and nurs- ing home cohorts to explain our findings.
Fourth, many important end-of-life outcomes are not
cap- tured in the MDS, including family satisfaction with
end-of-life care and the process of shared decision-
making. Fifth, 12% of the nursing home residents who
died within a year of admission were excluded because
a full MDS assessment was not completed within 180
days of death. Al- though these residents were similar
to those who met inclusion criteria at the time of
admission, it is possible that these groups differed with
respect to their end-of-life experience. Finally, our
data are limited to the state of Michigan and may not
be generalizable to other states where home care
services and nursing home care differ.
Many factors influence the location of terminal
care for persons with advanced dementia includ- ing
patient preferences and care needs, availabil- ity of
formal and informal services, financial resources, and
caregiver burden. As patients, fam- ilies and
practitioners weigh these varying influ- ences, it
behooves the health care community to improve the
care of those dying with this condi-
tion in whichever care setting they ultimately spend
their final days. This study underscores the need to
promote better palliative care in advanced dementia in
the home and nursing home settings.
ACKNOWLEDGMENTS
Supported by the Hebrew Rehabilitation Cen- ter for
Aged (HRCA) Research and Training Institute, the
Marcus Applebaum Fund at the HRCA, the Harvard
Older American Indepen- dence Center Grant (AG08812)
from the National Institute on Aging, Bethesda, MD and
InterRAI. Dr. Mitchell is supported by the NIH-NIA Men-
tored Patient Research Award (K23AG20054).
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This article has been cited by:

1. Deborah Birch, Jan Draper. 2008. A critical literature review exploring the challenges of delivering effective
palliative care to older people with dementia. Journal of Clinical Nursing 17:9, 1144-1163. [CrossRef]
2. Gemma MM Jones, William J van der Eerden. 2008. Designing care environments for persons with Alzheimer's
disease: visuoperceptual considerations. Reviews in Clinical Gerontology 18:01, 13. [CrossRef]
3. Sophie Pautex, François R. Herrmann, Paulette Le Lous, Monia Ghedira, Gilbert B. Zulian, Agnès Michon, Gabriel
Gold. 2007. SYMPTOM RELIEF IN THE LAST WEEK OF LIFE: IS DEMENTIA ALWAYS A LIMITING
FACTOR?. Journal of the American Geriatrics Society 55:8, 1316-1317. [CrossRef]
4. Eva Jakobsson , Ingrid Bergh , Fannie Gaston-Johansson , Carl-Magnus Stolt , Joakim Öhlén . 2006. The Turning
Point: Clinical Identification of Dying and Reorientation of CareThe Turning Point: Clinical Identification of Dying
and Reorientation of Care. Journal of Palliative Medicine 9:6, 1348-1358. [Abstract] [PDF] [PDF Plus]
5. Jenny T. van der Steen, Ladislav Volicer, Debby L. Gerritsen, Robin L. Kruse, Miel W. Ribbe, David R. Mehr. 2006.
Defining severe dementia with the Minimum Data Set. International Journal of Geriatric Psychiatry 21:11, 1099-
1106. [CrossRef]
6. Sharon E. Engel, Dan K. Kiely, Susan L. Mitchell. 2006. Satisfaction with End-of-Life Care for Nursing Home
Residents with Advanced Dementia. Journal of the American Geriatrics Society 54:10, 1567-1572. [CrossRef]
7. S. Pleschberger. 2006. Palliative Care in Pflegeheimen—. Zeitschrift für Gerontologie und Geriatrie 39:5, 376-381.
[CrossRef]
8. Susan L. Mitchell, Dan K. Kiely, Richard N. Jones, Holly Prigerson, Ladislav Volicer, Joan M. Teno. 2006.
Advanced Dementia Research in the Nursing Home: The CASCADE Study. Alzheimer Disease & Associated
Disorders 20:3, 166-175. [CrossRef]
9. J. Brandon Wallace, Suzanne S. Prevost. 2006. Two Methods for Predicting Limited Life Expectancy in Nursing
Homes. Journal of Nursing Scholarship 38:2, 148-153. [CrossRef]
10. Jennifer L. Lamberg, Carmel J. Person, Dan K. Kiely, Susan L. Mitchell. 2005. Decisions to Hospitalize Nursing
Home Residents Dying with Advanced Dementia. Journal of the American Geriatrics Society 53:8, 1396-1401.
[CrossRef]
Analisis Jurnal 4

Judul : Terminal Care For Persons With Advanced Dementia In The Nursing Home And Home Care
Settings

( Perawatan Terminal Untuk Orang Dengan Demensia Lanjut Di Panti Jompo Dan Perawatan Di
Rumah)

Pengarang : Susan L. Mitchel

Tanggal publikasi : 6 November 2004
Kesimpulan :
Ada 3483 penghuni panti jompo dan 314 klien perawatan di rumah dengan demensia lanjut yang
meninggal dalam 1 tahun masuk. Antara subyek ini, kami menyertakan 2730 (78%) penghuni panti
jompo dan 290 (92%) perawatan dirumah, klien yang memiliki penilaian MDS penuh 180 hari
sebelum mati. Penghuni panti jompo dikeluarkan dari penelitian karena mereka tidak punya penilaian
MDS lengkap selesai dalam 180 hari kematian (n 753, 12%) tidak berbeda secara signifikan dari
mereka yang termasuk dalam penelitian sehubungan dengan karakteristik dasar berikut: usia, gen der,
skor ADL, CPS, hari antara masuk dan kematian, dan diagnosis terminal potensial lainnya (mis.,
kanker, paru obstruktif kronis penyakit, dan gagal jantung kongestif Jumlah rata-rata hari antara
penilaian MDS terakhir sebelum kematian dan kematian tidak berbeda secara signifikan antara
kelompok panti jompo dan perawatan dirumah (51,0 [SD] 50,0 berbanding 54,7 [SD] 35,5 hari, p
0,11).

Critical aprasial :
a. Why was study done?
Untuk mendeskripsikan dan membandingkan pengalaman akhir hidup orang yang sekarat dengan
demensia di panti jompo dan perawatan di rumah.

b. What is sample of size?

Populasi : Orang berusia 65 tahun atau lebih dengan demensia lanjut yang meninggal dalam 1 tahun
masuk ke salah satu panti jompo di Michigan

Pengukuran: Data berasal dari Minimum Data MDS

Variabel dari penilaian MDS selesai dalam 180 hari kematian digunakan untuk menggambarkan
pengalaman akhir kehidupan kedua kelompok ini.

c. How were the data analyzed?

Semua analisis dilakukan dengan menggunakan SAS Version 8.1 untuk Untuk membandingkan
pengalaman akhir hidup dalam demensia lanjut di panti jompo dan di rumah, pengaturan perawatan
adalah variabel independen utama dalam semua analisis.

d. Are the measurements of major variables valid & relible?

Instrumen yang digunakan untuk penilaian variabel sudah valid/tepat. Karna sudah menggunakan
metode yang sesuai.
e. Were there any untoward events during the conduct of the study?
Untuk kejadian tidak diinginkan ada, seperti lamanya pengumpulan partisipan dan berkurangnya
partisipan karna ada yang meninggal, kemunduran pada fisik
f. What does this research mean for clinical practice?
penelitian menguatkan pengamatan sebelumnya bahwa orang dengan demensia lanjut yang
dirawat di panti jompo memiliki kebutuhan keperawatan yang lebih terampil dibandingkan dengan
mereka yang dikelola di rumah Perlu dicatat bahwa penghuni panti jompo lebih mungkin untuk
menerima terapi oksigen dan memiliki sesak napas yang dilaporkan lebih sedikit dibandingkan untuk
kelompok perawatan di rumah. Layanan rumah sakit di panti jompo telah terbukti meningkatkan
manajemen nyeri, mempromosikan perencanaan perawatan lanjut, dan mengurangi penggunaan
Jurnal 5

Original Article

Health workers coping with having

a relative in palliative care for
cancer

Profissional da saúde frente a situação de ter um familiar em cuidados paliativos por

Revista Gaúcha câncer Profesional de la salud ante la situación de tener un familiar en cuidados paliativos
de Enfermagem por cancer

Aline Blaas
Schiavona Rosani Manfrin
Munizb Norlai Alves de
Azevedob Daniela
Habekost Cardosoc
Michele Rodrigues Matosd
Isabel Cristina Oliveira Arrieirae

How to cite this article: a

Universidade Federal de Pelotas (UFPel), Programa de Residência Integrada Multiprofissional em Atenção Oncológica. Pelotas, Rio Grande do Sul, Brasil.
Schiavon AB, Muniz RM, Azevedo
NA, Cardoso DH, Matos MR, b
Universidade Federal de Pelotas (UFPel), Faculdade de Enfermagem. Pelotas, Rio Grande do Sul, Brasil.
Arrieira ICO. Health workers coping
with having a relative in palliative
c
Hospital Escola da Universidade Federal de Pelotas. Pelotas, Rio Grande do Sul, Brasil.
care for cancer. Rev Gaúcha Enferm. d
Secretaria Estadual de Saúde Pelotas. Pelotas, Rio Grande do Sul, Brasil.
2016 mar;37(1):e55080. doi:
http://dx.doi.org/10.1590/1983- e
Universidade Católica de Pelotas (UCPel). Hospital Escola da Universidade Federal de Pelotas. Pelotas, Rio Grande do Sul, Brasil.
1447.2016.01.55080.
DOI: http://dx.doi.org/10.1590/1983-
1447.2016.01.55080
ABSTRACT
Objective: To know the experience of
health workers who are coping with
having a relative in palliative care for
cancer. Methodology: A qualitative study
conducted with four family members of
cancer patients in palliative care. Data
were collected by means of semi-
structured interviews from November to
December, 2014, at the home of the
participants. The data were analysed
using the operative proposal of
Minayo.
Results: Two themes emerged, Health
worker and family member coping with a
cancer diagnosis and Health worker and
family member coping with the
proximity of death.
Conclusions: Being a family member
and a health professional at the same
time demanded greater involvement in
care and caused distress since these
workers witnessed the suffering of a
family member with a terminal disease.
However, their professional know-
ledge supported decision-making
during the care process.
Keywords: Palliative care. Medical
oncology. Family.
Online Version Portuguese/English: www.scielo.br/rgenf
www.seer.ufrgs.br/revistagauchadeenfermagem
RESUMO
Objetivo: Conhecer a vivência do profissional de saúde na situação de ter um familiar em cuidados paliativos por
câncer. Metodologia: Qualitativa, desenvolvido com quatro familiares de pacientes oncológicos em cuidados paliativos, por meio
de entre- vistas semiestruturadas, no período de novembro a dezembro de 2014, no domicílio dos participantes. Para a análise
dos dados foi utilizada a proposta operativa de Minayo.
Resultados: Surgiram duas temáticas, Profissional da saúde e ser familiar frente ao diagnóstico de câncer e Profissional da
saúde e Ser familiar no confronto com a proximidade com a morte.
Conclusões: Ser familiar na condição de profissional de saúde demandou maior comprometimento no cuidado, tornando-os
angus- tiados por terem que lidar com seus sentimentos de ver seu familiar em sofrimento pela doença e terminalidade, ao
mesmo tempo em que seus conhecimentos profissionais contribuíram na tomada de decisões durante este
processo.
Palavras-chave: Cuidados paliativos. Oncologia. Família.
RESUMEN
Objetivo: conocer la vivencia del profesional de la salud en la situación de tener un familiar en cuidados paliativos por
cáncer. Metodología: cualitativa, desarrollada con cuatro familiares de pacientes oncológicos en cuidados paliativos, por medio de
entre- vistas semiestructuradas, en el periodo de noviembre a diciembre de 2014. Para el análisis de los datos fue utilizada la
propuesta operativa de Minayo.
Resultados: surgieron dos temáticas, Profesional de la salud y ser familiar ante el diagnóstico del cáncer y Profesional de la salud
y ser familiar en la confrontación con la proximidad de la muerte.
Conclusiones: ser familiar en la condición de profesional de salud demandó mejor comprensión en el cuidado, poniéndolos
angus- tiados por tener que tratar con sus sentimientos al ver a su familia en sufrimiento por la enfermedad o terminalidad, al
mismo tiempo que sus conocimientos profesionales contribuyeron en la toma de decisiones durante este
proceso.
Palabras clave: Cuidados paliativos. Oncología médica. Familia.
1
Rev Gaúcha Enferm. 2016 Mar;37(1):e55080
 INTRODUCTION assumed that they will act in a similar manner to
that of lay family members, who provide a
humanised care and the required affection and
According to the Humanistic Nursing Theory of
comfort. Consequently, the fol-
Pa- terson and Zderad, health is understood as a
matter of personal survival, quality of life and
death. Disease, the medical diagnosis or any form
of denomination do little to determine the capacity
of a person for health. This capacity can only be
found in a person´s will to remain open to the
experiences of life, regardless of physical, social,
spiritual, cognitive or emotional state. The
experience of a disease and the subsequent
changes can impel people to search for the meaning
of life(1).
Thus, admitting that the resources for finding a
cure have been exhausted and that a person is
reaching the end of life does not mean that nothing
else can be done. On the contrary, care continues
to be a way to ensure the comfort and dignity of
patients beyond any therapeutic possibilities and
the family(2).
Palliative care includes these considerations and
de- fends death as a natural process. This form of
care aims to control and reduce the symptoms of a
disease through prevention and to alleviate the
physical, psychological, spiritual and social
suffering by including family support and the
consideration of grief(3).
When confronted with the end of life, health
workers must acknowledge the defence
mechanisms of patients and their families.
Similarly, it is important to value and understand
the feelings of the workers who provide care for
people at this terminal stage. Many feel
unprepared to provide the care, or they do not
know what to do (other than technical care) or
what to say. They find it hard to en- gage with
the patient and the family because they were
trained not to show emotion, like crying; they
trivialise death; and, as a method of
confrontation or defence, they fantasise that
death will not occur or act as if the patient will
recover(3). One of the reasons for these attitudes
is the absence of serious thought on palliative
care and the death process in the education of
health professionals, which forces patients and
families to carry an avoidable burden of
suffering(4).
It is therefore assumed that when the family
member of health workers is approaching death,
these profession- als will use their technical
training to distance themselves from common
suffering and the pain of loss. In addition, it is
lowing guiding question was drafted for the study: December 2014 by means
How do health workers experience having a
relative in pallia- tive care?
The considerations of the data were based on
the Hu- manistic Nursing Theory of Paterson and
Zderad. Human- istic nursing care is concerned
with the phenomenological experiences of
individuals and the exploration of human
experiences. It is rooted in existential thinking
and a philo- sophical approach to understanding
life, where individuals face the possibilities of
choice and attribute meaning to their
existence(1).
This study is justified by the scarcity of national
and in- ternational studies and the need to expand
and respond to a knowledge gap on this subject.
Most importantly, this study can help alleviate the
suffering and qualify the health professionals who
must cope with terminal disease in the family.
Consequently, this study is based on the following
question: How do health workers experience
having a rela- tive in palliative care? The objective
is to know how health- care professionals cope
with the experience of having a relative in
palliative care.

METHODOLOGY
The study refers to the final course work of a
residen- cy in oncologic care and it was conducted
in a city of southern Brazil. The adopted research
framework was the qualitative approach with an
exploratory and descriptive purpose. Data were
collected by means of interviews with four health
workers whose relatives received palliative care
for cancer until the end of their lives. These
relatives were all attended by the multidisciplinary
team of the interdisci- plinary home care
programme (PIDI) in a hospital of south- ern Brazil.
The participants were selected according to
the follow- ing inclusion criterion: healthcare
worker, family member diagnosed with cancer
who received palliative care from the PIDI and
who is deceased. The exclusion criterion was
individuals who were not professional health
worker and who had a family member at the
final stage of life. The par- ticipants were
selected according to the identification data
stored at the PIDI. The possible participants
totalled five, although telephone contact with
one of these participants was not possible.
After the participants signed the informed
consent statement, the data were collected at
the homes of the participants in November and
of semi-structured interviews of around 30 of values. They are the sole manifestations of their
minutes with each participant. The interviews past, present and future and are aware of
were recorded and tran- scribed in full. The themselves, that is, they are aware of their human
participants answered the following questions: responses and the meaning that each of these
How did you experience the terminal illness of responses
your family member? When did your family
member initi- ate palliative care? How did you
cope with the end-of-life of your family member?
What difficulties/conveniences did you encounter
during disease progression? Did your per- sonal
experience differ from your professional
experience? The anonymity of the participants
was guaranteed by as- signing colours to the
statements.
Research complied with the requirements for
research with human beings established in
Resolution 466/12 of the national health council, of
the ministry of health(5), and the code of ethics of
nursing professionals chapter III, concern- ing the
duties in articles 89, 90 and 91 and prohibitions in
articles 94 and 98(6). The research project was
registered at Plataforma Brasil and approved by the
research ethics com- mittee of the Faculdade de
Medicina of the UFPel under decision 573.610.
The data analysis process occurred in stages,
based on the operative proposal of Minayo. The first
stage was data ordering, which included the
transcription of the in- terviews and observations in
order to review the material in an orderly manner.
The second stage consisted of data classification
and the theoretical basis. The last stage con- sisted
of a final analysis, which included reflection,
compre- hension and interpretation of the
material(7) based on the Humanistic Nursing Theory
of Paterson and Zderad.

RESULTS AND DISCUSSION

Four subjects between the ages of 24 and 58
participat- ed in the study. Of these subjects two
were nurses, one was a dentist and one was a
nursing technician. Data analysis led to the
following themes:

THEME 1: Health worker and family

member coping with a cancer
diagnosis

According to Paterson and Zderad(8), humans are

singu- lar and unique and they are related to others
in time and space. They are characterised as being
capable, open to opinions and as being the bearers
offers to the world in which they live. Human social, emotional, psychological and organic as-
beings are the product of their decisions and pects of life(12).
have the capacity to re- late and to acknowledge
themselves and the world around them.
Thus, the discovery of a cancer diagnosis causes
a suc- cession of changes in individuals and their
families due to the stigma associated with this
disease and the fact that accepting death is
strongly linked to beliefs, values and adaptive
choices according to the internalisation of each
individual. Consequently, the patients and their
families re- quire the qualified assistance of a
palliative care team that helps them diminish the
impact of disease and ensure dig- nity during the
dying process(9). When these measures or strategies
are successful, they create a sense of security and
confidence that helps people live with disease(10).

The moment of the diagnosis, seven years ago, since

the diagnosis to death, caused some [...] anyway,
fears, any- way, because I couldn´t really cope with
that function of the cancer universe itself, so you still
see cancer as a death sentence [...] (RED)

Well, my mom was diagnosed with melanoma and

there, of course [,] in the beginning you’re scared [...]
(YELLOW)

The suffering comes from the anguish of the suffering

that the patient may feel, that’s what tormented me
the most [...] (RED)

Being the family member of a patient with a

disease like cancer is linked to the knowledge of
the disease and fear of the uncertainties of disease
progression, which can lead to suffering due to
internal and external injuries and the relationship
with death.
The relationship of cancer with pain, suffering,
self-de- terioration and the sense of finitude
demand care that can go beyond the illness and its
physical manifestations. The family must be
prepared to understand, offer emotional support
and meet the care requirements of family mem-
bers with cancer due to the conflicts and
difficulties they encounter(11).
The experiences of a disease like cancer affect
the suf- ferers and their entire families due to the
interconnection of family members. This
interconnection often implies the need for change
and personal and family reorganisation in the
 [...] it’s just that all this contains a family context, a tests or not, because if we are, how we are going to
social context, an economic context, so I was also going do them [...] only the burden of knowing, like oh no,
through a period of ... I was being qualified, with my now it’s diarrhoea, now it was an ob- struction [...]
activities. And they always had their own business, my (YELLOW)
father had to stop working for almost a year, and my
mother ran the business on her own. So, at that time
we all went through chang- es, we moved house,
there were financial changes, and my mother had to
stop working because of this process of his illness and
the care, she was the primary caregiver [...] (WHITE)

My mother was mine, I was hers when I was a child

and when she got old she was mine. (BLUE) (referring
to the daily care)

I remember something that struck me, because I had

nev- er seen my mother naked, ever... There was this
one day, I think it was the Monday before she died, it
was just me and her, and the poor thing soiled
herself. And I thought, gee, I can’t leave you like that,
mum. And I remember how difficult that was [...]
(RED)

WHITE mentions role reversal when the role of

the pa- tient as head of the family and breadwinner
is assumed by the mother. For BLUE and RED, role
reversal is related to care, where the caregiver
becomes the patient due to the fragility caused by
the terminal illness.
The experience of cancer triggers a new
reflection on life since the patients must change
their routine and now require the strict monitoring
of their health status due to the inevitable relapses
and progression of the disease(13).
The interviewees were the primary caregivers
of their family members and they were healthcare
workers, which created a greater burden of
commitment and deci- sion-making in relation to
other family caregivers.

One of the things that, like, even knowing about this

field of health [...], there comes a time when you can
no lon- ger bear the burden of having to decide so
many things alone, in the sense that, as we were six
sisters, we always decided things together and
together with him and with mum, so if we have to do
 My brothers and sisters always supported me when I
need- ed them, because I was working. In her last
few days, we prayed, they stayed overnight, I
accompanied them, but the primary care was mine, I
don’t know if it was because I work in the area of
health or what [...] (BLUE)
other situations.
So, my anxieties were not about her reaching the end
of her cycle, but about losing my mother as it were,
because

[...] it was my dad, my mum and my sister, and of

the four I was the only one with the knowledge, I
had to remain calm and organize the whole family in
the sense of [...], so that, in a way, that responsibility
of looking for a diagnosis, treatment [...] (RED)

With the intensification of symptoms and

disease pro- gression, the respondents saw
themselves as the family member with the
scientific knowledge to make decisions in
relation to the care and therapy of their
relatives, and often abdicated their own lives to
live with their loved one during the short time
he or she still had left.
Even when all the possibilities of recovering
the pa- tients’ health are exhausted and
imminent death seems inevitable, the patient
and family should receive contin- ued support
and palliative care. Dialogue is critical for the
planning of care based on listening and
appreciating the desires, feelings, behaviour and
needs of patients in order to understand the
meaning that others attribute to the ex-
perience(14).

THEME 2: Health workers and family

member coping with the proximity of
death

Death is a phenomenon with multiple

interpretations that differ across societies,
cultures and historic moments. It can be
understood as an integral part of human life or
as a hideous circumstance that unavoidably and
definitively terminates existence(15).
And when death becomes something concrete
to a family, its members often feel immersed in
feelings of an- guish and pain with psychological,
existential and spiritual effects. This condition
does not merely affect the patients, but also the
families who experience these vicissitudes (16).
The context in which the relatives were
inserted helped them accept the final stage of
the lives of their family mem- bers, as they,
being health workers, had confronted death in
 we will meet very soon, which is something I believe
in, right, and we interact in another form, although it’s
not the same, whether through our dreams or thoughts,
whether through intuition or spiritually, anyway we
interact and that’s how it always was, but it was the
fear of suffering [...] (RED)
So it’s a very painful process, and sometimes you think
that death is the only remedy. When the time really
comes, right, when the suffering stops for the patient
and for our family member and for the entire family.
(WHITE)

[...] you have this preparation, because we had a

religion, right, there was a pastor who went there,
the actual pas- tor of the PIDI I think was once there,
the people from the church went there a lot, of the
elderly group, right. So I think there is, it was not
unknown to us the end-of-life is- sue, we knew that
was going to happen one day and that day was
approaching [.] Because there were signs, right, in
the sense that he no longer wanted to live in that
situa- tion, he looked in the mirror and said: “I’m
disappearing...”. But we dealt with it in a sense that
we were talking about it a lot, but it’s not easy to
accept. (YELLOW)

Maybe, I don’t know, yes, it’s harder, because

sometimes being the layperson is better, because you
know it’s going to end. Or maybe it’s best that you know
too, because then you do everything at the right
moment for that person, than pretending it’s going to
get better. Right... but for me it was much better, very
good, very gratifying to have the care that I had for
my mom. (BLUE)

The process of dying can be experienced in

different ways depending on the shared meanings
of this experi- ence and whether they are
influenced by socio-cultural contexts. The family
can consider death as resting, a pas- sage or a
natural fact of life, and the adopted coping strate-
gy makes the experience of dealing with a family
member in palliative care less painful and
exhausting(17). It is ob- served that this line of
thought usually occurs when the family member
feels powerless in relation to the suffering of
another family member.

[...] I am not ashamed to say that in many of my

prayers, between delaying the death of my mother
and allowing the suffering to continue, I asked God to
abbreviate as quickly as possible [...] (RED)
 Thinking about death makes us individually in the place of others, I think that creates maturity,
reflect on our own lives and how we are living. makes you rethink things, value thing, value
To accompany a loved one during their final existence, your parents, your family, the people who
stage forces people to reflect on their own
are by our side. And even when we posi-
finitude and discover that they will also die,
which makes them rethink their existence,
review their val- ues and priorities and seek a
balance between themselves and others(18).

We think about our end-of-life, too, because I also

have melanoma, my mom also has melanoma, so
many, many times, when I was looking after him, I
was thinking, what will happen to me? Will I be like
this, too [...] we also think about our end-of-life, how
we will deal with it is another matter, I sometimes
wondered: will I face death like my father is facing it,
how am I going to do that, what am I going to do?
(YELLOW)

The proximity of the death of a loved one

forced the family members to think about their
own deaths and re- flect on their personal and
professional lives.

I don’t know if it’s because we’ve already had some,

for example, I already had experience in the field of
oncol- ogy, and we always bet on a different type of
care [...] so I think it contributes toward what you
think is right [...] And so the professional issue I think
contributed because it reinforced what I believe to
be care for cancer patients during the end of their
lives, in terms of family, in terms of patient.
(YELLOW)

[...] we have to live our lives according to what we

see when we look back on our lives regardless of
whether you are looking at the first or last 24 hours,
or, I don’t know, 10 years, 30 years, in my case 38
years, and that you are proud and did not overlook this
process. So, you try to change the reality around you,
what you do not agree with, even if this causes
conflicts, but that you’re trying to improve things [...]
(RED)

Because when we are faced with a case of illness in

the family, with someone very close to you and you
have to experience all of this, I think you start
looking at the world and at people differently, too. I
think we are easily moved, I think we put ourselves
 tion ourselves as professionals, I think we become more profession- al practice in the areas of healthcare
sensitive, I think it causes lot of changes, and they are and, above all, nursing,
positive for us as people, as nurses. (WHITE)

Thus, when providing care for human beings

who are experiencing the end of their lives, it is
important to consider the communication
strategies and interrelations with the terminal
patient. These experiences are a chal- lenge to all
the people involved since confronting an in-
dividual who is near death refers to the human
finitude of all individuals(19).

FINAL CONSIDERATIONS
This study reveals a number of changes in the
context of family, life, routine and role reversal
that caused discom- fort within the family.
Therefore, it was necessary to estab- lish coping
strategies and make changes in order to adapt to
the new situations.
This study shows that being a family member
and a health professional at the same time
demands great- er involvement in care and
decision-making regarding treatment since these
workers have the scientific and technical
knowledge that the other family members do not
have. The participants of this study claimed that
wit- nessing a family member suffering from a
disease and the final stage of their lives caused
distress, whereas their pro- fessional knowledge
helped them make decisions during this process.
The life prospects of the patients were
shattered with the diagnosis and progression of
the disease, forc- ing the interviewed family
members to think about the end of the life of a
loved one, about their own person- al and
professional lives, and about their own finitude
and death.
The proximity of death and the fear of suffering
of a loved one led the interviewed family members
to feel some ambivalence toward the final stage of
life since death was sometimes considered a way to
stop the suffering. Death was probably accepted by
the interviewed fami- ly members because they
were forced to confront death during their
professional practice and because of the fear of
extending the suffering of a loved one. The
statements shed light on the experience of health
professionals with a family member in palliative
care.
This study may contribute to education and
during the provision of care for patients at the 14. Silva KM, Santos SMA, Souza AIJ. Reflexões sobre a necessidade do cuidado
final stage of life, and may encourage further humanizado ao idoso e família. Sau Transf Soc. 2014;5(3):20-4.
reflection on the expe- riences of cancer patients
and healthcare professionals during this stage,
which is still rarely discussed in academia and in
health practices.
The limitation of this study was the reduced
number of participants. However, the statements
are considered sig- nificant and may contribute to
professionals and academ- ics interested in the
field of oncology. We suggest further research to
extend the results of this study.

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de dezembro de 2012. Aprova as diretrizes e normas regulamenta- doras
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reformulação do Código de Ética dos Profissionais de Enfermagem [Internet].
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São Paulo: Hucitec; 2010.
8. Paterson J, Zderad L. Enfermeria humanística. México: Limusa; 1979.
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oncológico e do familiar/cuidador frente à terminalidade de vida. J Health
Sci Inst. 2012;30(3):235-40.
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daily management of care at the end of life. Int J Palliat Nurs.
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11. Sena ELS, Carvalho PAL, Reis HFT, Rocha MB. Percepção de familiares sobre
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2011;20(4):774-81.
12. Salci MA, Marcon SS. As mudanças no cotidiano familiar e na vida da
mulher após o início do tratamento para o câncer. Rev Min Enferm. 2010;14(1):43-
51.
13. Salci MA, Marcon SS. Enfrentamento do câncer em família. Texto Contexto
En- ferm. 2011;20(Esp):178-86.
15. Fraga F, Boas RFOV, Mendonça ARA. Significado, para os médicos, da terminalidade
da vida e dos cuidados paliativos. Rev bioét (Impr.), 2012; 20(3): 514-19, 2012.
16. Sales SA, D’Artibale EF.O cuidar na terminalidade da vida: escutando os
famili- ares. Cienc Cuid Saude. 2011;10(4):666-73.
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ca existencial de suas vivências. Texto Contexto Enferm. 2011;20(Esp): 214-22.
19. Oliveira SG, Quintana AM, Denardin-Budó ML, Moraes NA, Lüdtke MF,
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Corresponding author:
Aline Blaas Schiavon
E-mail: aline-schiavon@hotmail.com
Received: 04.05.2015
Approved: 21.12.2015
Analisis Jurnal 5

ANALISIS JURNAL

Judul jurnal: Health workers coping with having a relative in palliative care for cancer

Pengarang: Schiavon AB, Muniz RM, Azevedo NA, Cardoso DH, Matos MR, Arrieira ICO, Rev
Gaúcha Enferm

Tahun: 2016

Kata kunci: Palliative care. Medical oncology. Family

Kesimpulan:

Penelitian ini bertujuan untuk mengetahui pengalaman petugas kesehatan yang menghadapi
kerabat dalam perawatan paliatif untuk kanker.

Hasilnya, empat subjek antara usia 24 dan 58 tahun berpartisipasi dalam penelitian ini. Dalam
subjek ini dua adalah perawat, satu adalah dokter gigi dan satu adalah seorang teknisi keperawatan.
Dalam penelitian ini mempunyai analisis data mengarah ke 2 tema yaitu:

Tema 1: Petugas kesehatan dan anggota keluarga mengatasi diagnosis kanker

Penemuan diagnosis kanker menyebabkan suksesi perubahan pada individu dan keluarga
mereka karena stigma yang terkait tentang penyakit ini, dan fakta bahwa menerima kematian
sangat terkait dengan kepercayaan, nilai dan pilihan adaptif sesuai dengan msing-masing
individu. Akibatnya, pasien dan keluarga mereka membutuhkan bantuan yang memenuhi syarat
dari tim perawatan paliatif, yang membantu mereka mengurangi dampak penyakit. Ketika
langkah-langkah ini berhasil, perawat paliativ menciptakan rasa aman dan percaya diri untuk
membantu pasien hidup dengan penyakitnya.
Menjadi salah satu anggota keluarga pasien dengan penyakit terminal ini terkait dengan
pengetahuan tentang penyakit dan ketakutan akan ketidakpastian perkembangan penyakit, yang
dapat menyebabkan penderitaan pasien semakin bertambah, jadi disini keluarga sangat
membutuhkan perawat paliativ untuk mendampingi pasien terminal ini. Selain perawat paliatif,
keluarga harus siap untuk memahami, memberikan dukungan dan memenuhi persyaratan
perawatan anggota keluarga.

Tema 2: Petugas kesehatan dan anggota keluarga mengatasi kedekatan dengan kematian
Kematian adalah fenomena dengan beragam interpretasi yang berbeda di berbagai
masyrakat, budaya, dan momen bersejarah. Kematian sebagai keadaan mengerikan yang tidak
dapat dihindari dan secara pasti mengakhiri keberadaanya. Dan ketika kematian menjadi sesuatu
yang konkret bagi keluarga, para anggota keluarga sering merasa terbenam dalam perasaan
sedih dan sakit dengan efek psikologis, eksitensial, dan spiritual. Kondisi ini tidak hanya
mempengaruhi pasien tetapi keluarga juga mengalami perubahan ini. Disini peran perawat
paliatif harus membantu anggota keluarga untuk menerima tahap akhir dari kehidupan pasien.
Dan perawat paliatif pun telah menghadapi kematian dalam situasi lain.
Dengan demikian, ketika memberikan perawatan bagi pasien yang mengalami akhir
hidup mereka, penting untuk mempertimbangkan strategi komunikasi dan interelasi dengan
pasien terminal.

Critical aprasial:
a. Why was study done?
Studi dilakukan untuk mengetahui pengalaman petugas kesehatan yang menghadapi pasien
dalam perawatan paliatif untuk kanker. Disini dijelaskan peran perawat paliativ sangat
penting dalam membimbing pasien terminal, membuat pasien merasanya nyaman dan aman
dalam penyakitnya, serta keluarga pun sedikit tidak khawatir karena ada seorang perawat
palliative memberikan edukasi kepada keluarga sampai mana penyakit pasien tersebut.
b. What is sample of size?
Ukuran sampelnya menggunakan kerangka penelitian yang diadopsi adalah pendekatan
kualitatif dengan tujuan eksplorasi dan deskriptif. Data dikumpulkan melalui wawancara
dengan empat petugas kesehatan yang kerabatnya menerima perawatan paliatif untuk kanker
sampai akhir hidup mereka. Para peserta dipilih berdasarkan criteria berikut: petugas
kesehatan, anggota keluarga yang didiagnosis menderita kanker . criteria eksklusi adalah
individu yang bukan petugas kesehatan professional dan yang memiliki anggota keluarga
pada tahap akhir kehidupan. Peserta disuruh untuk menandatangani surat pernyataan
persetujuan, setelah peserta menandatangi pernyataan persetujuan berdasarkan informasi,
dan data dikumpulkan. Memakai teknik wawancara semi terstruktur sekitar 30 menit dengan
masing-masing peserta.
c. How were data analyzed?
Data terjadi secara bertahap, berdasarkan proposal operatif minayo. Tahap pertama adalah
pemesanan data, yang meliputi transkripsi wawancara dan pengamatan untuk meninjau
materi secara tertib. Tahap kedua terdiri dari klarifikasi data dan landasan teori. Tahap
terakhir terdiri dari analisis akhir, yang meliputi refleksi, pemahaman interpretasi materi
berdasarkan teori keperawatan humanistic
d. Are the measurements of major variables valid& reliable?
Instrument yang digunakan untuk penilaian variable sudah tepat. Karna sudah menggunakan
metode yang sesuai dengan penelitian.
e. Were there any untoward events during the conduct of the study?
 Berkurangnya jumlah peserta. Namun pernyataan tersebut dianggap signifikan dan dapat
berkontribusi bagi para professional dan akademis. Menyarankan penelitian lebih lanjut
untuk memperluas hasil penelitian ini.
f. What does this research mean for clinical practice?
Tujuan agar pasien dibimbing oleh perawat paliatif agar pasien merasakan aman dan nyaman
menjalani penyakit terminalnya. Walaupun pasien di diagnosis penyakit lalu menjalani
terapi untuk keembuhan pasien , dan pasien bergeser keyakinan untuk sembuh dan
sampailah pasien meninggal dunia perawat paliatif masih berperan aktiv sampai keluarga
sudah bisa menerima.
Jurnal 6

Poltekita: Jurnal Ilmu Kesehatan Vol.12 No.2 Oktober 2018: Hal. 88-94

ANALISIS KASUS KANKER LIDAH DALAM KONTEKS ASUHAN KEPERAWATAN DENGAN

PENDEKATAN COMFORT THEORY MODEL

Analysis of inventory cancer case in context of nursing assessment

With comfort theory model approach

Dewi Nurviana Suharto

Poltekkes Kemenkes Palu
(dewinurviana.suharto@gmail.com, 0811459788)

ABSTRAK
Prevalensi pasien dengan kanker setiap tahun terus mengalami peningkatan. Kanker lidah merupakan keganasan
jenis karsinoma yang mengenai lidah dan hampir 95% berupa karsinoma sel skuamosa. Kanker lidah merupakan kanker
dengan progresifitas yang tinggi dengan prognosis jelek sehingga angka kematiannya akibat kanker lidah sangat tinggi
serta menimbulkan ketidaknyaman. Kenyamanan merupakan titik pangkal dari berbagai kesembuhan yang akan dicapai
oleh klien. Perbaikan kondisi klien tidak akan dicapai jika kebutuhan akan rasa nyaman tidak terpenuhi. Dalam
pemberian asuhan keperawatan masalah yang muncul pada kanker lidah adalah nyeri kronis, ketidakseimbangan nutrisi
kurang dari kebutuhan tubuh dan ketidakefektifan pola napas. Analisis proses praktik residensi menunjukkan bahwa
comfort theory dapat diterapkan pada pasien dengan kasus keganasan dalam pemberian asuhan keperawatan, karena
mampu mengidentifikasi ketidaknyaman pasien secara holistik dari aspek fisik, psikospiritual, sosiokultural dan
lingkungan.
Kata kunci : Comfort Theory, Kanker Lidah

ABSTRACT

The prevalence of patients with cancer increase every year. Tongue cancer is a type of malignancy of the
tongue, and almost 95% is squamous cell carcinoma. Tongue cancer is a cancer with high progression with
bad prognosis so that the mortality rate is very high and often causes discomfort. Comfort is the starting
point of various healing that will be achieved by the client. Improvements in client conditions will not be
achieved if the need of comfort is not fulfilled. In nursing care the problems that arise in tongue cancer are
chronic pain, nutrient imbalance: less than body needs, and ineffective breathing patterns. Analysis of
residency practice processes shows that comfort theory can be applied to patients with malignancy cases in
nursing care, as it can identify patients' holistic discomfort from the physical, psychospiritual, sociocultural
and environmental aspects.
Keyword : Comfort Theory, Tongue Cancer

kanker lidah bervariasi tergantung dari area geografis (1).

PENDAHULUAN
Secara geografis, India menunjukkan tingkat kejadian
Kanker lidah merupakan keganasan kanker rongga mulut yang tinggi yaitu sebesar 7,5 per
100.000
jenis karsinoma yang mengenai lidah dan hampir 95%
berupa karsinoma sel skuamosa. Insiden dan mortalitas
penduduk dan menyebabkan beban kesehatan utama(2).
Sedangkan di indonesia kanker lidah merupakan kasus
yang jarang terjadi, data dari Instalasi Deteksi Dini dan
Promosi Kesehatan RS Kanker Dharmais (2010-2013)
dengan progresifitas yang tinggi dengan prognosis yang
jelek sehingga angka kematian pada pasien yang dirawat
akibat kanker lidah sangat tinggi.
Kanker lidah lebih sering terjadi pada kelompok
usia yang lebih tua yaitu usia 40 tahun ke atas, meskipun
dapat ditemukan pada orang muda. Kanker ini dua kali
lebih umum pada pria dari pada wanita(2). Faktor utama
yang berperan terhadap timbulnya karsinoma lidah
adalah penggunaan tembakau dan alkohol dalam jangka
waktu lama. Faktor lain adalah infeksi virus papiloma
(1)
dan faktor kebersihan gigi serta mulut . Gejala kanker
lidah berupa bercak merah atau putih pada lidah yang
tidak bisa hilang, sakit tenggorokan yang lama,
munculnya ulkus atau benjolan di lidah yang tidak
hilang, nyeri saat menelan dan mati rasa di mulut.
Gejala yang sangat umum menyebabkan penyakit ini
terdiagnosis pada stadium lanjut, sehingga pilihan
pengobatan menjadi terbatas, prognosis jelek dan
kelangsungan hidup relatif singkat(4).
Pengobatan untuk kanker lidah tergantung pada
ukuran kanker. Pengobatan untuk kanker lidah stadium
dini adalah operasi. Untuk tumor yang lebih besar dan
telah menyebar ke kelenjar getah bening di leher, yaitu
kombinasi operasi dan radioterapi5. Pengobatan yang
dilakukan pada stadium dini dapat meningkatkan
kelangsungan hidup pasien mencapai 5 tahun dan angkan
kelangsungan hidup kurang dari 1 tahun terjadi pada
pasien dengan stadium lanjut(6). Pada stadium lanjut
pengobatan bukan lagi ditujukkan untuk menyembuhkan
tapi lebih kepada pengobatan untuk mengurangi gejala
dan meningkatkan kualitas hidup pasien(2).
Salah satu peran perawat spesialis dalam
pengelolaan kasus dan sesuai dengan perawatan
158 CM, IMT : 16 Kg/m2 (Underweight). Mukosa bibir
kering dan pecah-pecah, terdapat luka invasi kanker
pada dagu tertutup kasa, terdapat rembesan pada kasa,
luka diganti setiap pagi dan sore. Dileher kiri klien
terdapat luka kanker yang mengeluarkan cairan
berwarna kekuningan, luka tertutup kasa tebal, terlihat
rembesan pada kasa. Klien nampak meringis karena
merasa nyeri pada luka setiap diganti balutan, nyeri
skala 5, nyeri hilang timbul, nyeri seperti ditusuk-tusuk.
Insiden kanker lidah termasuk masih jarang, kejadiannya
hanya sekitar 14% dari semua jenis kanker yang
dirawat(3). Namun kanker lidah merupakan kanker
paliatif adalah comfort care. Kenyamanan merupakan
titik pangkal dari berbagai kesembuhan yang akan
dicapai oleh klien. Perbaikan kondisi klien tidak akan
dicapai jika kebutuhan akan rasa nyaman tidak
terpenuhi. Oleh karena itu rasa nyaman sifatnya holistik
dan sangat individual mencakup physical,
psychospiritual, enviromental dan sociocultural(7). Tugas
perawat untuk memenuhi kebutuhan akan rasa nyaman
yang sifatnya holistik tersebut. Seorang perawat
spesialis harus dapat mengidentifikasi kebutuhan
kenyamanan yang tidak terlihat dari pasien, dan bersifat
subyektif. Kondisi pasien kanker yang sebagian besar
mengalami nyeri dan ketidaknyaman, sehingga peran
tersebut dapat diaplikasikan dengan menggunakan
comfort teory model.
GAMBARAN KASUS
Seorang pasien wanita (Ny. SJ) usia 25 tahun,
agama islam, status menikah, pendidikan SLTA,
pekerjaan karyawan swasta, dengan alamat di jalan
Bango, Tangerang, nomor medikal record 219276.
Diagnosa medis Pleomorphic high grade sarcoma, grade
3 (FNCLCC) karsinoma lidah berdiferesiasi
buruk.Pengkajian dilakukan tanggal
15 Februari 2017 klien nampak sangat lemah, pucat dan
tidak bertenaga. Sejak 2 bulan yang lalu klien sudah
tidak bisa bicara kanker kanker lidah sudah memenuhi
rongga mulut klien. Klien terpasang trakheostomi,
produksi lendir banyak, batuk, terpasang oksigen melalui
trakheostomi 5 liter permenit (LPM). Terpasang
gastrostomi pada perut sebelah kiri, intake nutrisi
melalui gastrostomi, klien mengalami penurunan berat
badan dalam 6 bulan terakhir sekitar 25 Kg. BB klien
sebelumnya 65 Kg, BB saat ini 40 Kg, TB
Hasil pemeriksaan fisik : tekanan darah 140/90
mmHg, frekuensi nadi 68 kali per menit, nadi lemah dan
teratur, frekuensi napas 24 kali per menit, irama tidak
teratur. Konjungtiva terlihat anemis dan mukosa bibir
kering. Klien menggunakan otot bantu napas, vokal
fremitus kiri menurun, trill (+), perkusi paru pekak pada
lapang paru kiri, suara napas menurun pada lapang paru
kiri, terdengar bunyi ronki. Capillary refill time 3 detik,
turgor kulit sedang, kulit nampak kering dan terkelupas,
pada area lengan bawah sebelah kanan dan kiri terdapat
petekie. Klien terlihat kurus, intake nutrisi melalui
gastrostomi diet cair 1200 Kkal dengan pemberian 6 X
200cc. Hasil pemeriksaan laboratorium diperoleh
hemoglobin
10.9 g/dL (normal/N= 13-18), leukosit 16.95 103/uL (N=
5-10), trombosit 143 103/uL (N= 150- 440), eritosit 3.91
106/uL (N= 4,6-6,2), hematokrit 31.4 % (N= 40-45), MCV
80.3 fL (N=90-100), Absolute Neutrofil Count 16.13
103/uL (2.50-7.00). Klien mendapatkan terapi herbeser
13 mikro tiap
12 jam secara intravena melalui syringe pump, vitamin K
10 mg dalam NaCl 0,9% 100 cc tiap 8 jam, KCL 12,5 mg
dalam Nacl 0,9% tiap 6 jam secara intravena, infus
aminofluid + soluvn + vitalipid tiap 24 jam, MO 15 mg
dalam NaCl 0,9%
50 cc tiap 6 jam menggunakan syringe pump.
pasien adalah manajemen nutrisi yang bertujuan untuk
meningkatkan intake nutrisi makanan dan minuman
serta status mikro nutrien
Ketidakefektifan pola nafas. Data yang
berhubungan batuk berlendir, produksi sekret
banyak, terpasang trakheostomi, terpasang
oksigen
5 LPM. Klien menggunakan otot bantu napas, vokal
fremitus kiri menurun, trill (+), perkusi paru pekak pada
lapang paru kiri, suara napas menurun pada lapang paru
kiri, terdengar bunyi ronki. Tindakan yang diberikan
pada pasien adalah Respiratory Monitoring dan Oxygen
Therapy yang bertujuan untuk meningkatkan status
Klien juga mendapatkan terapi nebulizer jika dibutuhkan.
METODE PENELITIAN
Penulisan karya ilmiah ini menggunakan metode
studi kasus, yaitu analisis penerapan asuhan
keperawatan pada kasus kanker lidah. Adapun teknik
pengumpulan data yang digunakan meliputi wawancara,
observasi, catatan individu, atau rekam medik dan
perawatan. Data yang telah terkumpul dianalisis untuk
melihat masalah keperawatan yang dialami klien serta
meninjau keefektifan intervensi yang telah dilakukan
untuk menyelesaikan masalah keperawatan pasien.
HASIL
Pengkajian yang dilakukan ditemukan beberapa
masalah keperawatan yang terjadi diantaranya nyeri
kronis, ketidakseimbangan nutrisi kurang dari kebutuhan
tubuh, ketidakefektifan pola napas.
Nyeri kronik. Data yang berhubungan yaitu
keluhan nyeri pada area luka invasi massa kanker di area
dagu dan leher sebelah kiri, nampak menonjol keluar.
Skala nyeri 5, nyeri hilang timbul, nyeri seperti ditusuk-
tusuk, nyeri dirasakan sejak 6 bulan yang lalu, nyeri
memberat jika balutan diganti. Tindakan yang diberikan
pada pasien adalah manajemen nyeri yang bertujuan
untuk mengontrol nyeri pasien.
Ketidakseimbangan nutrisi kurang dari
kebutuhan tubuh. Data yang berhubungan sejak 2 bulan
terakhir klien tidak bisa lagi makan dan minum melalui
oral, terpasang gastrostomi diperut sebelah kiri, BB klien
sebelumnya 65 Kg, BB saat ini 40 Kg, TB 158 CM,
IMT : 16 Kg/m2
(Underweight). Tindakan yang diberikan pada
respirasi pasien.
PEMBAHASAN
Hasil pengkajian pasien diketahui faktor resiko
penyebab munculnya kanker lidah adalah inflamasi atau
iritasi kronis pada rongga mulut. Kanker ganas lidah
timbul pada tempat yang sesuai dengan sumber iritasi
kronik seperti caries gigi atau gigi busuk dengan calculus
yang banyak, dan juga karena pemasangan gigi palsu atau
prothesa yang posisinya tidak cocok(8,9,10). Penelitian lain
juga melaporkan bahwa pada pasien kanker lidah yang
dirawat memiliki riwayat kebersihan mulut yang buruk,
pemakaian behel gigi yang lama, caries gigi dan
penggunaan gigi palsu(11) Dari hasil pengkajian pasien
tidak memiliki riwayat merokok dan minum alkohol.
 Gejala ketidaknyamanan yang pertama kali
dirasakan oleh NY. SJ adalah munculnya lesi dilidah yang
terus menerus dan tidak sembuh- sembuh sampai
akhirnya berubah menjadi ulkus. Dari hasil pemeriksaan
MSCT Scan Nasofaring, terdapat lesi lingual kiri sisi
posterior yang melibatkan orofaring sugestif maligna.
Kanker
nyeri membutuhkan penanganan kolaborasi dengan
memberikan analgesik untuk mengurangi nyeri yaitu
pemberian MO 15 mg pada pasien. Pada tahap
transcendence, perawat menyiapakan untuk
meningkatkan kenyamanan pasien. pasien dengan
kanker lidah akan menimbulkan berbagai
ketidaknyamanan akibat nyeri. terlihat pada pasien
nyeri menyebabkan pasien takut untuk bergerak, pasien
kesulitan tidur dan pasien merasa kelelahan. Tindakan
yang diberikan yaitu dengan membantu pasien untuk
merubah posisi serta memberikan posisi yang nyaman
untuk mengurangi nyeri, memberikan massage ringan
pada area ekstremitas untuk memberikan kenyamanan
agar meningkatkan fase istirahat dan mengurangi
lidah terbanyak adalah pada bagian lateral termasuk
pada pasien yang awal mula munculnya lesi pada bagian
lateral. Hasil studi juga melaporkan bahwa sebagian
besar kanker lidah muncul pada bagian lateral sebesar
85%, pada bagian dorsum sebesar 5%, permukaan lidah
sebesar 5% dan ujung lidah sebesar 5%12. Hasil
pemeriksaan juga menunjukkan adanya keterlibatan
kelenjar getah bening regional dan infiltrasi dengan
gambaran MSCT scan yaitu limfadenopati multiple
perijugular bilateral dan submandibula bilateral dengan
kecurigaan adanya infiltrasi ke vena jungularis kiri. Studi
yang dilakukan pada 57 pasien kanker lidah
menggambarkan bahwa kanker lidah memiliki prognosis
yang buruk karena tingginya angka metastasis ke
(13,14)
kelenjar getah bening regional , serta invasi tumor
(15)
ke area lokal .
Nyeri. Pengkajian keperawatan berdasarkan
comfort theory, dilakukan untuk mengidentifikasi
ketidaknyamanan yang muncul. Pengkajian pada tahap
relief ditemukan nyeri kronis berada pada skala sedang,
nyeri memberat saat ganti balutan. Nyeri yang dirasakan
pasien merupakan efek dari kerusakan jaringan yang
aktual sehingga menyebabkan munculnya sensori dan
emosional yang tidak menyenangkan (16,17). Perubahan
pada vital sign akibat nyeri yaitu TD 140/90 mmHg, RR :
28x/mnt dan nadi 100x/mnt. Nyeri merupakan respon
subyektif, sehingga pengkajian berfokus pada respon
subyektif serta fisik yang terlihat dari pasien. Pada
tahap ease, pasien diharapkan mampu untuk mengontrol
nyeri yang dirasakan atau yang muncul. Kondisi pasien
dengan perawatan paliatif dan dengan kanker stadium
lanjut akan menimbulkan nyeri yang hebat akibat invasi
kanker, sehingga dalam mengontrol
kelelahan.
Ketidakseimbangan nutrisi. Nutrisi merupakan
masalah keperawatan yang erat kaitannya dengan kanker,
manajemen nutrisi yang baik sangat penting untuk
kelangsungan hidup pasien kanker. Pengkajian pada tahap
relief ditemukan klien mengalami penurunan berat badan
dalam 6 bulan terakhir sekitar 25 Kg. BB klien sebelumnya
65 Kg, BB saat ini 40 Kg, TB 158 CM, IMT : 16 Kg/m2
(Underweight), klien terlihat kurus dan nilai hemoglobin
10.9 g/dL. Nutrisi merupakan masalah ketidaknyamanan
yang paling sering muncul pada pasien kanker rongga
mulut terutama kanker lidah. Perkembangan kanker lidah
yang progresif, cepat dan berdiferensiasi buruk
menyebabkan kanker ini menutup akses makanan melalui
oral, kondisi ini yang menyebabkan terjadinya kaheksia
pada pasien dengan kanker lidah. Pada tahap ease,
perawat diharapkan mampu untuk menghitung kebutuhan
kalori harian yang diperlukan pasien untuk memenuhi
nutrisinya. Hasil perhitungan pasien membutuhkan 2000
kkal
akan mempengaruhi outcame pasien. Pada tahap ease,
perawat berusaha untuk mengurangi ketidaknyamanan
pasien dengan melakukan suction pada trakheostomi
untuk mengurangi akumulasi lendir pada jalan napas,
mengganti balutan trakheostomi setiap hari,
mempertahankan kelembapan udara melalui
trakheostomi dan mengganti kanul trakheostomi jika
setiap hari. Tahap transcendece dipenuhi untuk
meningkatkan kenyamanan pasien
kanker lidah,
ketidaknyamanan muncul akibat sesak napas, maka
dilakukan tindakan kolaborasi pemberian oksigen 5
ltr/mnt melalui trakheostomi untuk mencukupi
setiap hari, dengan pemberian diet cair 200cc sebanyak
5 kali permberian setiap hari. Pada tahap transcendece,
tindakan yang diberikan untuk meningkatkan
kenyamanan yaitu kolaborasi untuk tindakan
gastrostomy, mengingat intake nutrisi tidak bisa melalui
orang dan beresiko perdarahan jika menggunakan NGT
karena kanker hampir menutupi area esofagus. Untuk
pemberian nutrisi melalui gastrostomy, perawat
melakukan edukasi dan mengajar cara pemberian nutrisi
melalui gastrostomy pada keluarga selama perawatan
pasien, hal ini bertujuan untuk memandirikan keluarga
saat perawatan tidak lagi dilakukan di rumah sakit.
Selain itu hal penting yang perlu diperhatikan juga
adalah perawatan gastrostomy untuk menghindari
terjadinya infeksi. Perawatan gastrostomy dilakukan
dengan mengganti balutan setiap 3 hari sekali, mengatur
posisi gastrostomy untuk menghindari gastrostomy
terlipat atau tertarik. Tindakan kenyamanan yang
kongkrit dan sesuai dengan kondisi pasien dapat
meningkatkan kenyamanan pasien kanker lidah.
Ketidakefektifan pola nafas adalah pertukaran
(18)
udara inspirasi dan/atau ekspirasi tidak adekuat .
Pengkajian pada tahap relief, ditemukan sesak napas,
pernapasan 28x/mnt, batuk berlendir, terdapat bunyi
ronchi, penggunaan otot bantu pernapasan, Sa02 98%
dan capilary refilling time 3 detik. Kondisi ini sesuai
dengan gambaran penyakit pasien dimana telah terjadi
metastasis ke paru. Gambaran foto toraks Ny. SJ (Tgl 27-
01- 2017) ditemukan efusi pleura kiri dan nodul multiple
pada paru kanan. Efusi pleura muncul sebagai efek dari
metastasis tersebut. Efusi pleura secara akan
menyebabkan pasien sesak dan kesulitan bernapas. Hal
ini akan memunculkan ketidaknyamanan pada pasien
kanker lidah yang
kebutuhan oksigen pasien. Terapi oksigen sangat penting
diberikan untuk menjamin kecukupan oksigen terutama
pada pasien kanker lidah. Namun, pada pasein kanker
dengan stadium lanjut dan metastasis paru terapi oksigen
hanya merupakan terapi pendukung untuk mengurangi
kenyamanan pasien, karena masalah utama bersumber
dari paru, dan memerlukan tindakan kolaborasi sebagai
penanganan utama.
KESIMPULAN DAN SARAN
Kanker lidah merupakan kanker dengan prognosis
yang jelek dengan angka kematian yang tinggi, sehingga
kanker ini akan menimbulkan banyak masalah terutama
ketidaknyamanan. Ketidaknyamanan secara langsung akan
menurunkan kualitas hidup pasien kanker lidah sehingga
perlu mendapatkan perhatian utama. Penerapan
comfort theory model dapat membantu perawat dalam
memberikan asuhan keperawatan yang holistik dan
komprehensif. Pendekatan comfort theory berfokus
pada 3 tahap yaitu relief, ease dan transcendence.
Perawat spesialis dituntung untuk mampu
mengidentifikasi
ketidaknyamanan yang tidak terlihat, mengurangi
ketidaknyamanan dan meningkatkan kenyamanan
dengan menggunakan comfort theory. Pemberian asuhan
keperawatan yang holistik dan komprehensif dapat
membantu pasien dengan kanker lidah untuk
meningkatkan kenyamanan, mengontrol atau
mengurangi nyeri serta meningkatkan kualitas hidup
UCAPAN TERIMA KASIH
Penulis mengucapkan terima kasih kepada semua
pihak yang memberikan bantuan serta dukungan
sehingga studi kasus ini dapat diselesaikan.
DAFTAR PUSTAKA
1. Satyan, Breitbart W, Jaramillo J, Chochinov
HM. Palliative and terminal care. In: Holland
JC (Ed). Textbook of psycho-oncology. New
York: Oxford University Press, 2006 : 437–49.
2. Consensus Document For Management Of
Tongue Cancer. Anxiety and cancer: the
patient and the family. J Clin Psychiatry 2014;
50: 20–25.
3. Kemenkes RI, 2015. Prevalensi penderita
kanker lidah di Indonesia.
4. Mangold, Togerson A, Rogers EM, , et al. Role
of human papilloma virus in oral tongue
squamous cell carcinoma. Asian Pac J Cancer
Prev. 2016; 12(4):889-96.
5. Claudia, Yavuz AA, Ozyilkan O. Cancer
cachexia: Pathophysiologic aspects and
treatment options. Asia Pacific J Cancer Prev.
2013;8:445-51.
6. Zhang, Couch M, Lai V, Cannon T, Guttridge
D, Zanation A, George J, et al. Cancer
cachexia syndrome in head and neck cancer
patients: Part I. diagnosis, impact on quality
of life and survival, and treatment. Head
Neck 2012;29:401-11.
7. Mangol, Kelly, Desport JC, Gory-Delabaere G,
Blanc-Vincent MP, Bachmann P, Beal J,
Benamouzig R, et al. Practice guideline:
Standards, options and recommendations for
the use of appetite stimulants in oncology. Br
J Cancer 2016;89:S98-100.
8. Desen, Stone, P, Hardy, J, Broadley, K,
Tookman, AJ, Kurowska, A, A’Hern, R.
 Fatigue in advanced cancer: a prospective
controlled cross-sectional study. Br J Can-
cer 2011; 79: 1479–1486
9. Cancer research. Quality of life in
terminal care-with special reference to
age, gender and marital status. Support
Care Cancer 2017; 14: 320–328
10. Cancer treatment centre of america.
Multidimensional fatigue and its
correlates in hospitalised advanced
cancer patients. Eur J Cancer 2017;
43:1030–1036
11. Kimura, Sumi, Sumi T. Fatigue in
patients with advanced cancer: a
review. Int J Cancer 2012; 12: 424–428
12. Hibbert, watkinson, gaze wilson,
LeGrand, SB. Cancer fatigue–more data,
less informa- tion? Curr Oncol Rep
2010; 4: 275–279.
13. Rodriguez, Isovsky, C, Schneider, SM.
Cancer-related fatigue. Online J Issues
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TJ. Cancer-related fatigue: an update.
Curr Oncol Rep 2014; 7: 277–282.
14. Suslu, Prue, G, Rankin, J, Allen, J,
Gracey, J, Cramp, F. Cancer-related
fatigue: a critical appraisal. Eur J Cancer
2013; 42: 846–863.
15. Alves, Bagheri, Shahrokh C., 2011.
Cinical Review of Oral and Maxillofacial
Surgery, Mosby, Elsevier, Atlanta,
Georgia. Hal. 10-12
16. International Association for the Study
of Pain. (2017, August 6). IASP
Taxonomy.
http://www.iasppain.org/Taxonomy
17. Black, Joyce M., & Hawks, Jane
Hokanson. (2014). Keperawatan
Mediakl Bedah Manajemen Klinis untuk
Hasil yang Diharapkan edisi 8 buku 3.
Jakarta: salemba medika.
18. Nanda. (2015). Diagnosis Keperawatan
Definisi & Klasifikasi 2015-2017 Edisi 10
editor T Heather Herdman, Shigemi
Kamitsuru. Jakarta: EGC.
Analisis Jurnal 6

1. Judul Penelitian
ANALISIS KASUS KANKER LIDAH DALAM KONTEKS ASUHAN
KEPERAWATAN DENGAN PENDEKATAN COMFORT THEORY MODEL
2. Kata Kunci
Comfort Theory, Kanker Lidah
3. Pengarang / Author
Dewi Nurviana Suharto, Poltekkes Kemenkes Palu
4. Tanggal Publikasi
Poltekita: Jurnal Ilmu Kesehatan, Vol.12 No.2 Oktober 2018: Hal. 88-94.
5. Kesimpulan
Penelitian ini bertujuan untuk membuktikan bahwa comfort theory dapat diterapkan
pada pasien terminal dengan kasus keganasan dalam pemberian asuhan keperawatan.
Pada penelitian ini penulis menggunakan metode studi kasus, yaitu analisis penerapan
asuhan keperawatan pada kasus kanker lidah. Adapun teknik pengumpulan data yang
digunakan meliputi wawancara, observasi, catatan individu, atau rekam medik dan
perawatan. Data yang telah terkumpul dianalisis untuk melihat masalah keperawatan yang
dialami klien serta meninjau keefektifan intervensi yang telah dilakukan untuk
menyelesaikan masalah keperawatan pasien.
Penerapan comfort theory model dapat membantu perawat dalam memberikan asuhan
keperawatan yang holistik dan komprehensif. Pendekatan comfort theory berfokus pada 3
tahap yaitu relief, ease dan transcendence. Perawat spesialis dituntung untuk mampu
mengidentifikasi ketidaknyamanan yang tidak terlihat, mengurangi ketidaknyamanan dan
meningkatkan kenyamanan dengan menggunakan comfort theory. Pemberian asuhan
keperawatan yang holistik dan komprehensif dapat membantu pasien dengan kanker lidah
untuk meningkatkan kenyamanan, mengontrol atau mengurangi nyeri serta meningkatkan
kualitas hidup.
Comfort theory sangat membantu dalam pemberian asuhan keperawatan untuk
menurunkan ketidaknyamanan pasien. Jadi, ada pengaruh comfort theory terhadap pasien
kanker lidah tekanan intraokuler di Palu pada tahun 2018.

6. Critical Apraisal
a. Why was this study done?
 Kanker lidah merupakan keganasan jenis karsinoma yang mengenai lidah dan
hampir 95% berupa karsinoma sel skuamosa. Insiden dan mortalitas kanker
lidah bervariasi tergantung dari area geografis. Salah satu peran perawat
spesialis dalam pengelolaan kasus dan sesuai dengan perawatan paliatif adalah
comfort care. Kenyamanan merupakan titik pangkal dari berbagai kesembuhan
yang akan dicapai oleh klien. Perbaikan kondisi klien tidak akan dicapai jika
kebutuhan akan rasa nyaman tidak terpenuhi. Oleh karena itu rasa nyaman
sifatnya holistik dan sangat individual mencakup physical, psychospiritual,
enviromental dan sociocultural
 Penelitian ini bertujuan untuk bertujuan untuk membuktikan bahwa comfort
theory dapat diterapkan pada pasien terminal dengan kasus keganasan dalam
pemberian asuhan keperawatan
 Peneliti sudah menuliskan dengan jelas tujuan dilakukan penelitian
 Kata kunci yang digunakan peneliti sudah sesuai
 Fakta dan teori dituliskan kutipannya. Sehingga meningkatkan nilai
kebenarannya.

b. What is sample of size ?

Penulisan karya ilmiah ini menggunakan metode studi kasus, yaitu analisis
penerapan asuhan keperawatan pada kasus kanker lidah. Adapun teknik
pengumpulan data yang digunakan meliputi wawancara, observasi, catatan individu,
atau rekam medik dan perawatan. Data yang telah terkumpul dianalisis untuk
melihat masalah keperawatan yang dialami klien serta meninjau keefektifan
intervensi yang telah dilakukan untuk menyelesaikan masalah keperawatan pasien

c. How were the data analyzed?

` Data yang telah terkumpul dianalisis untuk melihat masalah keperawatan
yang dialami klien serta meninjau keefektifan intervensi yang telah dilakukan untuk
menyelesaikan masalah keperawatan pasien.
d. Are the measurements of major variables valid &reliable?
 Instrumen yang digunakan untuk penilaian variabel sudah valid/tepat.
Instrumen yang digunakan reliable/mampu menampilkan/memberikan makna
yang sama ketika digunakan oleh semua responden

e. Were there any untoward events during the conduct of the study?
Persetujuan diperoleh dari Instansi terkait studi. Seorang peneliti
menjelaskan penelitian ini kepada pasien, dan informed consent tertulis telah
diperoleh sebelumnya. Identitas pribadi subjek dilindungi karena semua data
diidentifikasi hanya berdasarkan jumlah kasus, sehingga kerahasiaan terjamin.
Mereka diberi kesempatan untuk mengajukan pertanyaan, dan diberi tahu bahwa
mereka dapat menarik diri dari penelitian ini kapan pun tanpa efek samping
pada perawatan mereka selanjutnya. Semua hasil untuk penelitian ini dilaporkan
sebagai agregat. Selain itu, jika subjek mendeteksi efek merugikan dari asuhan
keperawatan dengan pendekatan comfort theory yang tidak diinginkan atau
tidak diantisipasi, maka intervensi segera dihentikan.

f. How do the results fit with previous search in the area?

Penelitian ini memiliki beberapa kekuatan metodologis.

 Sampel direkrut langsung dari responden suatu Rumah Sakit di Palu. Tingkat
tindak lanjut sangat bagus.
 Penelitian ini menggunakan metode studi kasus untuk melihat masalah
keperawatan yang dialami klien serta meninjau keefektifan intervensi yang telah
dilakukan untuk menyelesaikan masalah keperawatan pasien.

g. What does this research mean for clinical practice?

Dari semua komponen tersebut, terlihat bahwa Penerapan Comfort

Theory Model Dapat Membantu Perawat Dalam Memberikan Asuhan
Keperawatan yang Holistik dan Komprehensif Bagaimana pun, karena
ukuran sampel yang kecil, kita bisa menganggapnya sebagai studi
pendahuluan, dan penelitian lanjutan harus dilanjutkan dengan merekrut lebih
banyak sample penelitian. Namun, temuan itu dapat membantu Profesi
Perawat untuk mengatasi masalah perawatan paliatif terhadap kanker dengan
menggunakan pendekatan Comfort Theory
Jurnal 7

PENINGKATAN KUALITAS HIDUP PADA PENDERITA GAGAL GINJAL

KRONIK YANG MENJALANI TERAPI HEMODIALISA MELALUI
PSYCHOLOGICAL INTERVENTION DI UNIT HEMODIALISA
RS ROYAL PRIMA MEDAN TAHUN 2016

Emma Veronika Hutagaol

Fakultas Keperawatan dan Kebidanan Universitas Prima Indonesia Medan
Emmahutagaol20@yahoo.com

ABSTRACT

The chronic renal failure was a problem important, prevalence and evidence based to
improve. Patients were chronic renal failure improvement of the quality of patients with
undergoing hemodialysis. The purpose of this study was to determine the increase in the
quality of life of patients with chronic renal failure undergoing hemodialysis therapy through
psychological intervention at the Hemodialysis Unit, Royal Prima Hospital Medan in 2016.
This type of research is pre experiment with the design of one group pre-post test
design. This research was conducted in June 2016. The samples of this study were 12
patients suffering from chronic renal failure drawn by purposive sampling technique. Based
on the results of this study, it is indicated that the quality of life before psychological
intervention on (pre-test) the average was 2.58 with a standard deviation of 0.515. While
the quality of life is better after the psychological intervention (post-test) the average was
1.50 with a standard deviation of 0.674.
Based on statistical test of Wilcoxon, it was obtained that p-value 0.002 (<0.05),
meaning there is a significant increase in quality of life between psychological intervention
and quality of life of patients with chronic renal failure undergoing hemodialysis.
The conclusion of this study states that there is an improvement of the quality of
patients with chronic renal failure undergoing hemodialysis to psychological intervention
through devotions and spiritual relaxation can be used as an alternative spiritual therapy to
improve the quality of life of patients with chronic renal failure undergoing hemodialysis.

Keywords : Psychological Intervention, Quality of Life, People with CRF, Hemodialysis

PENDAHULUAN pengobatan pengganti ginjal yang harus dialami oleh

penderita gagal ginjal merupakan pengobatan yang
Gagal ginjal kronik merupakan suatu masalah
mahal, butuh waktu dan kesabaran yang harus
kesehatan yang penting, mengingat selain prevalensi
dan angka kejadiannya semakin meningkat juga
ditanggung oleh penderita gagal ginjal dan
keluarganya (Harrison, 2013).
Berdasarkan data Badan Kesehatan Dunia atau
World Health Organization (WHO) memperlihatkan
Berdasarkan Riskesdas tahun 2013, prevalensi
gagal ginjal kronis berdasar diagnosis dokter di
Indonesia sebesar 0,2%. Prevalensi tertinggi di Sulawesi
Tengah sebesar 0,5 %, diikuti Aceh, Gorontalo, dan
Sulawesi Utara masing- masing 0,4 %. Sementara Nusa
Tenggara Timur, Sulawesi Selatan, Lampung, Jawa
Barat, Jawa Tengah, DI Yogyakarta, dan Jawa Timur
masing–masing 0,3 %. Provinsi Sumatera Utara sebesar
0,2% (Riskesdas, 2013).
Penderita gagal ginjal kronik harus melakukan
terapi hemodialisa untuk memperpanjang usia harapan
hidup. Kegiatan ini akan berlangsung terus- menerus
sepanjang hidupnya (Smeltzer & Bare, 2002). Oleh
karena itu, kebutuhan pasien pada stadium lanjut suatu
penyakit tidak hanya pemenuhan/pengobatan gejala
fisik, namun juga pentingnya dukungan terhadap
kebutuhan psikologis, sosial dan spiritual yang dilakukan
dengan pendekatan interdisiplin yang dikenal sebagai
perawatan paliatif (Dhina, 2015).
Perawatan paliatif ini dapat menggunakan
intervensi dengan psikologis (psychological
intervention) berupa relaksasi spiritual. Pemberian
intervensi ini dilakukan dengan setting kelompok dan
diharapkan tercipta peer group support sesama
penderita yang akan meningkatkan
TINJAUAN PUSTAKA
A. Anatomi dan Fisiologi Ginjal
1. Ginjal
Ginjal adalah sepasang organ saluran kemih yang
terletak di rongga retroperitoneal bagian atas.
Bentuknya menyerupai kacang dengan sisi cekungnya
menghadap ke medial, sisi tersebut terdapat hilus ginjal
yaitu tempat struktur- struktur pembuluh darah, sistem
limfatik, sistem saraf dan ureter menuju dan
meninggalkan ginjal (Purnomo, 2009).
2. Fungsi Ginjal
yang menderita gagal ginjal baik akut maupun kronik
mencapai 50% sedangkan yang diketahui dan
mendapatkan pengobatan hanya 25% dan 12,5% yang
terobati dengan baik (Indrasari, 2015).
motivasi mereka dalam beradaptasi terhadap
penyakitnya (menerima), sehingga mampu membangun
mekanisme koping yang efektif dan dapat meningkatkan
kualitas hidupnya (Dhina, 2015).
Berdasarkan hasil survei awal yang dilakukan
melalui wawancara dengan kepala ruang Unit
Hemodialisa RS Royal Prima Medan menyatakan bahwa
data satu bulan terakhir yaitu Maret 2016, terdapat
36 orang pasien yang menjalani terapi hemodialisa, baik
satu minggu dua kali maupun satu minggu tiga kali dan
lamanya hemodialisa minimal dalam seminggu selama
10 jam, dan dari 36 orang pasien tersebut, terdapat 28
orang pasien yang memiliki tingkat kualitas hidup
rendah itu terlihat dari menurunnya kepatuhan pasien
dalam menjalani jadwal hemodialisa dan kurangnya
dukungan dari keluarga sehingga pasien lebih menutup
diri, dan 8 orang pasien memiliki kualitas hidup yang
baik itu terlihat dari motivasi pasien sangat tinggi
dalam menjalani terapi hemodialisa sesuai dengan
jadwal yang sudah ditentukan dan dukungan keluarga
pasien juga baik.
a. Mengeksresikan zat-zat yang
merugikan bagi tubuh
b. Mengeksresikan gula kelebihan gula
dalam darah.
c. Membantu keseimbangan air dalam
tubuh
d. Mengatur konsentrasi garam dalam
darah dan keseimbangan asam-basa
darah.
e. Ginjal mempertahankan pH plasma
 darah pada kisaran 7,4 melalui antar kutub ginjal antara 11-15 cm. Perbedaan panjang
dari kedua ginjal yang lebih dari 1,5 cm atau perubahan
pertukaran ion hidronium dan
bentuk ginjal merupakan tanda yang penting karena
hidroksil (Prabowo, 2014). kebanyakan penyakit ginjal dimanifestasikan dengan

3. Struktur Anatomi Ginjal perubahan struktur (Suharyanto & Madjid, 2009).

Ginjal orang dewasa panjangnya 12 sampai 13 cm,

lebarnya 6 cm dan beratnya antara 120-150 gram. B. Gagal Ginjal Kronik
Sembilan puluh lima persen (95%) orang dewasa
1. Pengertian Gagal Ginjal
memiliki jarak
Gagal ginjal terjadi ketika ginjal tidak mampu
mengangkut sampah metabolik tubuh atau melakukan
fungsi regulernya. Suatu bahan yang biasanya di
eliminasi di urin menumpuk dalam cairan tubuh akibat
gangguan ekskresi renal dan menyebabkan gangguan
fungsi endokrin dan metabolik, cairan, elektrolit serta
asam-basa (Suharyanto & Madjid, 2009).
Gagal ginjal adalah suatu kondisi dimana fungsi
ginjal mengalami penurunan sehingga tidak mampu lagi
untuk melakukan filtrasi sisa metabolisme tubuh dan
menjaga keseimbangan cairan elektrolit seperti sodium
dan kalium di dalam darah atau urin. Penyakit ini terus
berkembang secara perlahan hingga fungsi ginjal
semakin memburuk sampai ginjal kehilangan fungsinya
(Price & Wilson, 2006).

2. Etiologi Tabel 2 Stadium Chronic Kidney Disease/ CKD

Gagal ginjal kronik disebabkan oleh berbagai (Black & Hawks, 2005 dalam
penyakit, seperti Bayhakki, 2013)
glomerolunefritis akut, gagal ginjal akut, penyakit GFR
Stadium Deskripsi Istilah Lain (ml/mnt/
ginjal polikistik, obstruksi saluran kemih, pielonefritis, 2
3m)
nefrotoksin, dan penyakit sistemik, seperti diabetes
Kerusaka
n ginjal
melitus, hipertensi, lupus eritematosus, poliartritis,
I sel sabit,
penyakit dengan Berisiko
serta amiloidosis >90
(Bayhakki, 2013).
GFR
3. Klasifikasi
normal
Kerusakan
Menurut National Kidney
ginjal Insufisiensi
Foundation
II denganClassification of Chronic
ginjal kronik 60-89
Kidney GFR
Disease, CKD(IGK)
dibagi dalam lima
stadium.
turun
ringan
GFR turun IGK, gagal
III 30-59
sedang ginjal kronik
GFR turun Gagal ginjal
IV 15-29
berat kronik
Gagal ginjal
tahap
Gagal
V <15
ginjal akhir
4. Patofisiologi
Patogenesis gagal ginjal kronik melibatkan
penurunan dan kerusakan nefron yang diikuti
kehilangan fungsi ginjal yang progresif. Total laju
filtrasi glomerulus (GFR) menurun dan klirens
menurun, BUN dan kreatinin meningkat. Nefron yang
masih tersisa mengalami hipertrofi akibat usaha
menyaring jumlah cairan yang lebih banyak.
Akibatnya, ginjal kehilangan
kemampuan memekatkan urine.
Tahapan untuk melanjutkan ekskresi, sejumlah besar
urine dikeluarkan, yang menyebabkan klien mengalami
kekurangan cairan. Tubulus secara bertahap
kehilangan kemampuan menyerap elektrolit. Biasanya,
Kardiovaskuler, c) Respiratory System, d)
Gastrointestinal, e) Integumen, f) Neurologis, g)
Endokrin, h) Hematopoitiec, dan i) Musculoskeletal.
6. Pemeriksaan Penunjang
Berikut ini adalah pemeriksaan penunjang yang
dibutuhkan untuk menegakkan diagnosa gagal ginjal
kronik (Prabowo, 2014): a) Biokimiawi, b) Urinalisis, c)
Ultrasonografi Ginjal, dan d) Imaging (gambaran) dari
ultrasonografi.
7. Penatalaksanaan
Mengingat fungsi ginjal yang rusak sangat sulit
untuk dilakukan pengembalian, maka tujuan dari
penatalaksanaan klien gagal ginjal kronik adalah untuk
mengoptimalkan fungsi ginjal yang ada dan
mempertahankan keseimbangan secara maksimal untuk
memperpanjang harapan hidup klien. Sebagai penyakit
yang kompleks, gagal ginjal kronik
membutuhkan penatalaksanaan
terpadu dan serius, sehingga akan meminimalisir
komplikasi dan meningkatkan harapan hidup klien.
8. Komplikasi
Komplikasi yang dapat ditimbulkan dari penyakit
gagal ginjal kronik adalah (Prabowo, 2014): a) Penyakit
tulang, b) Penyakit kardiovaskuler, c) Anemia, dan
d) Disfungsi seksual.
urine yang dibuang mengandung banyak sodium
sehingga terjadi poliuri (Bayhakki, 2013).
5. Manifestasi Klinis
Tanda dan gejala klinis pada gagal ginjal
kronik dikarenakan gangguan yang bersifat
sistemik. Ginjal sebagai organ koordinasi dalam
peran sirkulasi memiliki fungsi yang banyak
(organs multifunction), sehingga kerusakan kronis
secara fisiologis ginjal akan mengakibatkan
gangguan keseimbangan sirkulasi dan vasomotor.
Berikut ini adalah tanda dan gejala yang
ditunjukkan oleh gagal ginjal kronik (Robinson,
2013): a) Ginjal dan gastrointestinal, b)
C. Hemodialisis
1. Pengertian Hemodialisis
Hemodialisis merupakan suatu proses terapi
pengganti ginjal dengan menggunakan selaput membran
semi permeabel (dialiser), yang berfungsi seperti nefron
sehingga dapat mengeluarkan produk sisa metabolisme
dan mengoreksi gangguan keseimbangan cairan dan
elektrolit pada pasien gagal ginjal (Ignatavicius, 2006
dalam Hayani, 2014).
2. Tujuan
Tujuan dilaksanakannya terapi hemodialisis adalah
untuk mengambil zat- zat nitrogen yang bersifat toksik
dari dalam tubuh pasien ke dializer tempat darah
tersebut dibersihkan dan kemudian dikembalikan
ketubuh pasien
(Cahyaningsih, 2009).
3. Prinsip yang Mendasari Kerja
Hemodialisis
Ada tiga prinsip yang mendasari kerja
hemodialisis, yaitu difusi, osmosis dan ultrafiltrasi. Pada
difusi toksin dan zat limbah didalam darah dikeluarkan,
dengan cara bergerak dari darah yang memiliki
kosentrasi tinggi ke cairan dialisat yang memiliki
konsentrasi rendah. Pada osmosis air yang berlebihan
pada tubuh akan dikeluarkan dari tubuh dengan
menciptakan gradien tekanan dimana air
bergerak dari tubuh pasien ke cairan dialisat. Gradien
ini dapat ditingkatkan melalui penambahan tekanan
negatif yang dikenal sebagai ultrafiltrasi pada mesin
dialisis (Brunner & Sudarth, 2002).
4. Indikasi Hemodialisis
Hemodialisis diindikasikan pada pasien dalam
keadaan akut yang memerlukan terapi dialisis jangka
pendek (beberapa hari hingga beberapa minggu) atau
pasien dengan gagal ginjal tahap akhir yang
pelaksanaan terapi hemodialisis (Hirmawaty, 2014)
memerlukan terapi jangka panjang/permanen. Secara
adalah:
umum indikasi dilakukan hemodialisis pada penderita
gagal ginjal adalah: (a) Laju filtrasi glomerulus kurang
dari 15 ml/menit; (b) Hiperkalemia; (c) Kegagalan
terapi konservatif; (d) Kadar ureum lebih dari
200 mg/dl; (e) Kreatinin lebih dari 65 mEq/L; (f)
Kelebihan cairan; dan (g) Anuria berkepanjangan lebih
dari 5 kali (Smeltzer et al. 2008 dalam Mardyaningsih,
2014).
5. Adekuasi Hemodialisis
Setelah pasien melakukan
hemodialisis pertama dan dilanjutkan dengan
hemodialisis rutin maka, penting melakukan pengkajian
untuk menentukan apakah pasien telah mendapatkan
hemodialisis yang adekuat atau tidak. Pengkajian
hemodialisis harus meliputi (Cahyaningsih, 2009): a)
Gejala pasien,
b) Hasil Pemeriksaan Darah, c) Berat
Badan Ideal dan Manajemen Cairan, d)
Kinetik Modelling, dan e) Urea Reduction
Ratio
6. Komplikasi
Komplikasi yang dapat diakibatkan oleh
a. Hipotensi dapat terjadi selama dialisis
ketika cairan dikeluarkan
b. Emboli udara merupakan komplikasi
yang jarang tetapi dapat saja terjadi
jika udara memasuki sistem vaskuler
pasien.
c. Nyeri dada dapat terjadi karena pCO2
menurun bersamaan dengan terjadinya
sirkulasi darah diluar tubuh.
d. Pruritus dapat terjadi selama terapi
dialisis selama produk akhir
metabolisme meninggalkan kulit.
e. Gangguan keseimbangan dialisis terjadi
karena perpindahan cairan serebral
dan muncul sebagai serangan kejang.
Komplikasi ini kemungkinan terjadi
lebih besar jika terdapat gejala uremia
yang berat.
f. Kram otot yang nyeri terjadi ketika
cairan dan elektrolit dan cepat
meninggalkan ruang ekstrasel.
g. Mual dan muntah merupakan hal yang
sering terjadi.
 7. Peran Perawat di Unit
Hemodialisa
Merujuk pada definisi sehat yang dikeluarkan oleh
WHO, maka dalam upaya meningkatkan derajat
kesehatan yang setinggi-tingginya bagi pasien gagal
ginjal yang menjalani hemodialisis, pelayanan
kesehatan dituntut untuk dapat memfasilitasi pasien
agar mendapatkan kondisi kesehatan yang optimal.
Perawat sebagai bagian yang integral dari tim
pelayanan kesehatan sangat berperan dalam
mengupayakan terwujudnya
kondisi kesehatan yang optimal bagi pasien gagal ginjal
yang menjalani hemodialisis dengan cara memberikan
asuhan keperawatan paliatif yang bersifat komprehensif
dan holistik yang meliputi bio-psiko-sosio dan spiritual
(Potter & Perry, 2005).
8. Kepatuhan Pasien GGK
dengan Hemodialisa
Kepatuhan (adherence) secara umum didefinisikan
sebagai tingkatan perilaku seseorang yang mendapatkan
pengobatan, mengikuti diet, dan melaksanakan gaya
hidup sesuai dengan rekomendasi pemberi pelayanan
kesehatan (Syamsiyah, 2011). Kepatuhan pasien
terhadap rekomendasi dan perawatan dari pemberi
pelayanan kesehatan adalah penting untuk kesuksesan
suatu intervensi. Akan tetapi, ketidakpatuhan menjadi
masalah yang
c. Faktor Petugas/provider (Reinforcing
factors)
Faktor provider meliputi: keberadaan tenaga
perawat terlatih, ahli diet, kualitas komunikasi,
dukungan keluarga.
besar terutama pada pasien yang menjalani
hemodialisis, sehingga berdampak pada berbagai aspek
perawatan pasien, termasuk konsistensi kunjungan,
regimen pengobatan serta pembatasan makanan dan
cairan (Syamsiah, 2011).
9. Faktor yang Mempengaruhi
Kepatuhan dan
Ketidakpatuhan Pasien
Hemodialisa
Menurut Model Perilaku Green, (1980) dan Model
Kepatuhan Kamerrer, (2007) menyatakan bahwa faktor-
faktor yang berhubungan dengan ketidakpatuhan pasien
GGK terhadap hemodialisis adalah (Syamsiah, 2011):
a. Faktor Pasien (Predisposing faktors)
Faktor pasien meliputi karakteristik
pasien (usia, jenis kelamin, ras, status
perkawinan, pendidikan),
lamanya sakit, tingkat
pengetahuan, status bekerja, sikap,
keyakinan, nilai-nilai, persepsi,
motivasi, harapan pasien,
kebiasaan merokok.
b. Faktor Sistem Pelayanan Kesehatan
(Enabling factors)
Faktor pelayanan kesehatan meliputi: fasilitas
unit hemodialisa, kemudahan mencapai
pelayanan kesehatan termasuk didalamnya
biaya, jarak, ketersediaan transportasi, waktu
pelayanan, dan keterampilan petugas.
D. Kualitas Hidup
1. Pengertian Kualitas Hidup
Kualitas hidup (Quality of Life) merupakan konsep
analisis kemampuan individu untuk mendapatkan hidup
yang normal terkait dengan persepsi secara individu
mengenai tujuan, harapan, standar dan perhatian secara
spesifik terhadap kehidupan yang dialami dengan
dipengaruhi oleh nilai dan budaya pada lingkungan
individu tersebut berada (Adam, 2006).
Kualitas hidup adalah sasaran utama yang ingin
dicapai di bidang pembangunan sehingga kualitas hidup
ini sejalan dengan tingkat kesejahteraan. Diharapkan
semakin sejahtera maka kualitas hidup semakin tinggi.
Kualitas hidup ini salah satunya dipengaruhi oleh
derajat kesehatan. Semakin tinggi derajat kesehatan
seseorang maka kualitas hidup juga semakin tinggi
(Nursalam, 2013).
beberapa aspek yaitu: (1) Domain kesehatan fisik, (2)
Domain psikologis, (3) Domain hubungan sosial, dan (4)
Domain lingkungan.
5. Dampak Hemodialisa
terhadap Kualitas Hidup
Dampak hemodialisa akan berakibat terhadap
respon pasien. Hal ini dipengaruhi oleh beberapa faktor,
diantaranya karakteristik individu, pengalaman
sebelumnya dan mekanisme koping. Tiap dimensi
mempunyai pengaruh tersendiri terhadap kualitas hidup
(Mardyaningsih, 2014).
E. Psychological Intervention
2. Faktor yang Mempengaruhi
Kualitas Hidup
Avis (2005) dalam Riyanto (2011) menyatakan
bahwa faktor-faktor yang mempengaruhi kualitas hidup
dibagi menjadi dua bagian. Bagian pertama adalah sosio
demografi yaitu jenis kelamin, usia, suku/etnik,
pendidikan, pekerjaan dan status perkawinan. Kedua
adalah medik yaitu lama menjalani hemodialisis,
stadium penyakit, dan penatalaksanaan medis yang
dijalani.
3. Pengukuran Kualitas Hidup (Quality
Of Life/QOL)
WHO telah menginisiasiasi sebuah proyek bernama
World Health Organization Quality of Life (WHOQOL),
pada tahun 1991, yang bertujuan membentuk suatu
instrumen pengukuran kualitas hidup yang
terstandardisasi secara internasional. WHOQOL
mengukur persepsi seseorang dalam konteks budaya,
sistem nilai, tujuan hidup, standard dan pertimbangan
mereka. Instrumen ini telah dikembangkan dan diuji
lapangan secara mendunia. WHOQOL-BREF terdiri dari
26 item pertanyaan yang terdiri dari 4 dimensi (Rasjidi,
2010).
4. Domain Kualitas Hidup
Menurut WHO (1996) dalam Nursalam (2013), ada
empat domain yang dijadikan parameter untuk
mengetahui
kualitas hidup. Setiap domain dijabarkan
1. Pengertian
a. Psikologikal (Psychological)
Istilah “psikologi” secara epistemologi berasal dari
bahasa Yunani, yaitu kata psyche dan logos. Pysche
artinya jiwa dan logos artinya ilmu. Dengan demikian,
secara harfiah psikologi adalah ilmu jiwa atau dengan
pengertian lain ilmu yang mempelajari gejala-gejala
kejiwaan (Saam & Wahyuni, 2014).
Psikologikal merupakan hal yang merupakan
kepribadian atau kejiwaan dan kemampuan individu
dalam memanfaatkannya
menghadapi stres yang disebabkan situasi dan lingkungan
(Nursalam, 2013).
 b. Intervensi (Intervention)
Istilah “intervensi” merupakan istilah yang saat
ini umum digunakan orang untuk menunjuk pada
berbagai macam tindakan yang dimaksudkan untuk
memberikan kesembuhan atas gangguan kejiwaan atau
pelurusan atas penyesuaian diri yang salah
(Wiramihardja, 2007).
c. Psychological Intervention
Psychological intervention merupakan salah satu
intervensi melalui pendekatan psikologis/kejiwaan
seperti pemberian relaksasi spiritual dzikir dan
meditasi yang berfungsi untuk meningkatkan motivasi
dan kualitas hidup seseorang yang mengalami penyakit-
penyakit terminal seperti gagal ginjal kronik, kanker,
penyakit infeksi kronik, penyakit jantung terminal,
AIDS, akibat kecelakaan fatal, dan stroke multiple
sklerosis.
2. Terapi Psikologis
Terapi psikologis meliputi: terapi psikodinamis,
terapi humanistik, terapi perilaku, terapi psikoreligius,
dan terapi kelompok (Support Group)
3. Relaksasi Spiritual Dzikir
a. Relaksasi
Relaksasi merupakan kegiatan untuk
mengendurkan ketegangan, pertama- tama ketegangan
jasmaniah yang nantinya akan berdampak pada
penurunan ketegangan jiwa (Wiramihardja, 2006).

Adapun pendapat Benson (Buchori, 2008), relaksasi

c. Relaksasi Spiritual Dzikir
adalah prosedur empat langkah yang melibatkan: (1)
menemukan suasana lingkungan yang tenang; (2) Relaksasi spiritual dzikir adalah salah satu

mengendorkan otot-otot tubuh secara sadar; (3) selama ritual yang biasa dilakukan oleh umat Islam yang dapat

sepuluh sampai dua puluh menit memusatkan diri pada menimbulkan respon relaksasi dan memberikan efek

perangkat mental; (4) menerima dengan sikap yang terhadap kesehatan jangka panjang dan perasaan

pasif terhadap pikiran-pikiran yang sedang bergolak bahagia. Terapi dzikir juga merupakan bagian dari

(Zuliani, 2014). meditasi transcendental yang dapat menghambat efek

stres dengan menurunkan kadar kortisol (Yanti, 2012).
b. Spiritual
Spiritual adalah keyakinan dalam hubungannya
dengan Yang Maha Kuasa dan Maha Pencipta, sebagai METODOLOGI
contoh seseorang yang percaya kepada Allah sebagai Desain penelitian yang digunakan
Pencipta atau sebagai Maha Kuasa. Spiritualitas
mengandung pengertian hubungan manusia dengan
dalam penelitian ini adalah penelitian pra-
Tuhannya dengan menggunakan instrumen (medium) eksperiment dengan menggunakan
sholat, puasa, zakat, haji, doa dan sebagainya (Hawari,
rancangan one-group pre post test design
2004).
yang bertujuan untuk mengetahui
b. Dzikir
Dzikir berasal dari bahasa Arab, yakni kata peningkatan kualitas hidup pada
dzakara, yadzkuru, dan dzikran yang berarti mengingat. penderita gagal ginjal kronik yang
Secara umum dzikir ialah semua amal atau perbuatan
menjalani terapi hemodialisa melalui
baik yang lahir maupun batin, yang membawa
seseorang untuk mengingat Allah dan mendekat psychological intervention di Unit
(taqarrub) kepada- Nya (Al-Halaj, 2014).
Hemodialisa RS Royal Prima Medan Tahun
2016.

Populasi dalam penelitian ini adalah seluruh

pasien gagal ginjal kronik yang menjalani terapi kronik sebanyak 36 orang. Pengambilan sampel
hemodialisa di Unit Hemodialisa RS Royal Prima Medan menggunakan teknik purposive sampling memiliki
pada bulan Maret 2016, jumlah penderita gagal ginjal kriteria inklusi dan kriteria eksklusi.

HASIL PENELITIAN cukup 42% (5 orang) dan kualitas hidup kurang 58% (7
orang).
AnalisaUnivariat
Tabel 2 Distribusi Frekuensi Setelah Dilakukan
Berdasarkan hasil penelitian peningkatan kualitas Psychological
Intervention dengan Terapi Relaksasi
hidup pada penderita gagal ginjal kronik yang menjalani Spiritual Dzikir Terhadap
terapi hemodialisa melalui psychological intervention di Peningkatan Kualitas Hidup Pada
Penderita Gagal Ginjal Kronik di Unit
Unit Hemodialisa Rumah Sakit Royal Prima Medan Tahun Hemodialisa Rumah Sakit Royal
2016, dapat dilihat gambaran distribusi frekuensi Prima Medan Tahun 2016
sebagai berikut:
Kualitas Persent
Tabel 1 Distribusi Frekuensi Sebelum Dilakukan Jumla
No hidup a
Psychological h (n)
Intervention dengan Terapi Relaksasi post- test se
Spiritual Dzikir Terhadap Peningkatan (%)
Kualitas Hidup Pada Penderita Gagal
Ginjal Kronik di Unit Hemodialisa
1 Kualitas 7 58
Rumah Sakit Royal Prima Medan Tahun hidup baik
2016 2 Kualitas 4 33
Kualitas Persent hidup
Jumla cukup
No hidup a
h (n) 3 Kualita 1 9
pre- se
s hidup
test (%)
kurang
1 Kualitas - - Total 12 100
hidup baik
2 Kualitas 5 42 Berdasarkan tabel 2, dapat dilihat bahwa kualitas
hidup
hidup pada penderita gagal ginjal kronik setelah
cukup
3 Kualitas 7 58 dilakukan psychological intervention dengan terapi
hidup relaksasi spiritual dzikir dari 12 orang responden ada
kuran yang mengalami peningkatan kualitas hidup, itu dapat
g dilihat dari kualitas hidup baik 58% (7 orang), kualitas
Total 12 100 hidup cukup 33% (4 orang) dan kualitas hidup kurang 9%
(1 orang).
Berdasarkan tabel 1, dapat dilihat bahwa kualitas
hidup pada penderita gagal ginjal kronik sebelum
dilakukan psychological intervention dengan terapi
Analisa Bivariat
relaksasi spiritual dzikir dari 12 orang responden tidak Analisa bivariat dilakukan untuk melihat

mengalami peningkatan kualitas hidup itu dapat peningkatan kualitas hidup pada

dilihat dari
responden hanya mengalami kualitas hidup

penderita gagal ginjal kronik yang menjalani terapi Psychological Intervention

hemodialisa terhadap psychological intervention dengan Terapi Relaksasi Spiritual
dengan terapi relaksasi spiritual dzikir. Dzikir di Unit Hemodialisa RS
Tabel 3 Peningkatan kualitas Hidup pada Penderita Royal Prima Medan Tahun 2016
Gagal Ginjal Kronik yang Menjalani
Terapi Hemodialisa Terhadap
 Kualita Std. P-
n Mea Deviatio
s Value
n n
Hidup
Pre test 12 2,58 0,515 0,002
Post test 12 1,50 0,674
Berdasarkan hasil tabel 3, dapat dilihat bahwa dari
12 orang penderita gagal ginjal kronik dengan signifikan
0,05 atau 5%. Jika nilai signifikansi >0,05, maka H0
diterima dan jika signifikasi <0,05, maka H0 ditolak.
Berdasarkan hasil perhitungan wilcoxon signed rank
test, maka nilai Z=- 3,127 dengan (p=0,002) <0,05
sehingga keputusan hipotesis maka H0 ditolak, yang
artinya ada peningkatan kualitas hidup antara
psychological intervention dengan terapi relaksasi
spiritual dzikir terhadap kualitas hidup pada penderita
gagal ginjal kronik yang menjalani terapi hemodialisa di
Unit Hemodialisa RS Royal Prima Medan Tahun 2016.
ketidaknyamanan, domain psikologis seperti perasaan
negatif dari sisi spiritual, pasien terkadang merasa
Tuhan tidak adil karena mereka menderita penyakit
gagal ginjal kronik dan harus menjalani terapi
hemodialisa seumur hidup, pasien juga merasa tidak
berdaya dan tidak mampu lagi menjalani hidup, domain
hubungan sosial seperti dukungan keluarga rendah dan
domain lingkungan seperti penurunan aksesbilitas dan
kualitas dan 42% (5 orang) mengalami kualitas hidup
cukup, itu terlihat dari domain fisik, domain psikologis
dan domain lingkungan pasien tidak mengalami
penurunan kualitas, sementara domain hubungan sosial
pasien mengalami penurunan itu dapat dilihat dari
dukungan keluarga yang rendah sehingga pasien lebih
menutup diri dan tingkat kepatuhan pasien dalam
PEMBAHASAN
A. Kualitas Hidup Sebelum dilakukan
Psychological Intervention dengan
Terapi Relaksasi Spiritual Dzikir
Menurut Nurchayati (2010) menyebutkan bahwa
kualitas hidup seseorang tidak dapat didefenisikan
dengan pasti, hanya orang tersebut yang dapat
mendefenisikannya, karena kualitas hidup merupakan
suatu yang bersifat subyektif. WHOQoL menyatakan
kualitas hidup adalah persepsi individu terhadap
posisinya dalam kehidupan, dalam konteks budaya dan
sistem nilai dimana individu tersebut hidup, dan
hubungan terhadap tujuan, harapan, standar dan
keinginan (Mardyaningsih, 2014).
Sebelum dilakukan psychological intervention
dengan terapi relaksasi spiritual dzikir didapatkan dari
12 orang responden terdapat 58% (7 orang) responden
mengalami kualitas hidup kurang, itu terlihat dari
pasien mayoritas berusia diatas 45 tahun sehingga
pasien cenderung mengalami berbagai komplikasi yang
memperberat fungsi ginjal sangat besar dibanding
dengan yang berusia dibawah 40 tahun, pasien juga
sudah lama mengalami hemodialisa.
Hal ini mengakibatkan pasien mengalami
penurunan kualitas hidup pada domain fisik seperti
ketergantungan pada
obat dan bantuan medis, kelelahan, dan
menjalani hemodialisa juga semakin menurun.
Rata-rata kualitas hidup yang dialami penderita
gagal ginjal kronik sebelum dilakukan psychological
intervention dengan terapi relaksasi spiritual dzikir
adalah 2,58 mengalami (kualitas hidup kurang) itu
terlihat dari tingkat kesejahteraan dan kepuasan hidup
pasien juga rendah. Oleh karena itu, peningkatan
kualitas hidup pasien menjadi prioritas keperawatan
yang harus mendapatkan
penanganan pada penderita gagal ginjal kronik yang
menjalani terapi hemodialisa.
B. Kualitas Hidup Setelah dilakukan
Psychological Intervention dengan
Terapi Relaksasi Spiritual Dzikir
Berdasarkan penelitian yang sebelumnya
dilakukan oleh Subandi dkk (2013) tentang pengaruh
terapi psikoreligius dengan relaksasi doa dan dzikir
terhadap penurunan tingkat ansietas pada lansia
diketahui bahwa penerapan terapi psikoreligius dengan
relaksasi doa dan dzikir dapat menurunkan tingkat
ansietas secara signifikan, yang dimana dari 32
menyebabkan penurunan kepatuhan pasien dalam
menjalani terapi, pasien juga bosan dan jenuh dalam
menjalani hemodialisa karena pasien sudah cukup lama
dalam menjalani terapi.
Domain hubungan sosial dan lingkungan pasien
juga tetap mengalami penurunan, itu terlihat dari
pasien kurang mendapatkan dukungan dari keluarga dan
penurunan aksesbilitas dan kualitas lingkungan sekitar
pasien, kualitas hidup cukup 33% (4 orang) dipengaruhi
karena pasien masih mengalami penurunan kualitas
hidup pada domain fisik yaitu pasien mengalami
kelemahan, keterbatasan vitalitas dan ketergantungan
pada bantuan medis, sementara domain psikologis,
domain hubungan sosial dan lingkungan pasien
mengalami peningkatan dan kualitas hidup baik 58% (7
orang), pasien mengalami peningkatan kualitas hidup itu
terlihat dari semua domain yang mempengaruhi kualitas
hidup yaitu domain fisik, domain psikologis, domain
hubungan sosial dan lingkungan mengalami peningkatan
sehingga tingkat kesejahteraan, kebahagiaan, dan
kepuasan hidup, pasien juga meningkat.
responden terjadi penurunan tingkat ansietas sebesar
67% yang mempengaruhi pengkatan kualitas hidup
pasien (Jauhari, 2014).
Penelitian kualitas hidup setelah dilakukan
psychological intervention dengan terapi relaksasi
spiritual dzikir dapat dilihat bahwa dari 12 orang
responden mengalami peningkatan kualitas hidup
setelah dilakukan psychological intervention dengan
terapi relaksasi spiritual dzikir dari kualitas hidup
kurang 9% (1 orang) karena pasien mengalami
penurunan kualitas hidup pada domain fisik yaitu
keterbatasan vitalitas, ketergantungan bantuan medis
dan kelelahan, domain psikologis yaitu pasien
mengalami perasaan negatif sehingga
C. Peningkatan Kualitas Hidup
Penderita Gagal Ginjal Kronik
yang Menjalani Terapi
Hemodialisa Terhadap
Psychological Intervention di
Unit Hemodialisa RS Royal
Prima Medan Tahun 2016.
Hasil analisa statistik peningkatan kualitas hidup
penderita gagal ginjal kronik terhadap psychological
intervention dengan terapi relaksasi spiritual dzikir,
dengan jumlah responden 12 orang responden diperoleh
rata-rata 2,58 dengan standar deviasi 0,515 sebelum
dilakukan psychological intervention dengan terapi
relaksasi spiritual dzikir (pre-test) dan terjadi
peningkatan kualitas hidup setelah psychological
intervention dengan terapi relaksasi spiritual dzikir
yaitu 1,50 dengan standar deviasi 0,674. Berdasarkan
hasil perhitungan wilcoxon signed rank test, dengan
p=0,002 (p<0,05) sehingga keputusan hipotesis maka H0
ditolak, bahwa ada peningkatan kualitas hidup yang
signifikan antara psychological intervention dengan
terapi relaksasi spiritual dzikir terhadap kualitas hidup
penderita gagal ginjal kronik yang menjalani terapi
hemodialisa di Unit Hemodialisa RS Royal Prima Medan
Tahun 2016.
Hal ini sesuai dengan salah satu intervensi non
farmakologi yang dapat dilakukan perawat secara
mandiri dalam
meningkatkan kualitas hidup, yaitu dengan
melakukan psychological intervention dengan terapi
relaksasi spiritual dzikir pada penderita gagal ginjal
kronik yang menjalani terapi hemodialisa untuk
meningkatkan kualitas hidup yang di alami oleh
responden.
Hasil penelitian ini sejalan dengan penelitian
Jauhari di ruang hemodialisa Rumah Sakit Kota
Semarang 2014, menunjukkan secara keseluruhan ada
pengaruh yang bermakna antara peningkatan kualitas
hidup dengan penurunan depresi sebelum dan sesudah
dilakukan pemberian terapi psikoreligius: doa dan dzikir
didapatkan penurunan depresi pada pasien sehingga
mengalami peningkatan kualitas hidup. Ada perbedaan
signifikan peningkatan kualitas hidup sebelum dan
sesudah pemberian terapi psikoreligius: doa dan dzikir
pada penderita gagal ginjal kronik yang menjalani
hemodialisa.
Terapi spiritual dzikir adalah kesadaran tentang
kehadiran Allah SWT, dimana dan kapan saja, serta
kesadaran akan kebersamaan-Nya dengan makhluk.
Dzikir yang antara lain digunakan sebagai terapi
psikoreligius akan mampu menaikkan kekebalan tubuh
manusia melalui jaringan psiko-neuro-endokrin
tersebut. Semua protektor yang ada di dalam tubuh
manusia bekerja dengan
penelitian lebih dalam lagi mengenai domain-domain
yang mempengaruhi kualitas hidup seperti domain
fisik, domain psikologis, domain hubungan sosial dan
lingkungan agar penderita gagal ginjal kronik yang
menjalani terapi hemodialisa melalui psychological
intervention di Unit Hemodialisa mengalami
peningkatan kualitas hidup.
DAFTAR PUSTAKA
Al-Halaj, Iqbal, Muhammad, Qoys, 2014.
Pengaruh Dzikir Menjelang Tidur
Terhadap Kualitas Tidur Lanjut Usia
di Panti Sosial Tresna Wredha Budi
Mulia 01 Jakarta Timur,
ketaatan beribadah, lebih mendekatkan diri kepada
Allah SWT dan pandai bersyukur sehingga tercipta
suasana keseimbangan dari neurotransmitter yang ada
di dalam otak (Jauhari, 2014).
KESIMPULAN
Kualitas hidup pada penderita gagal ginjal kronik
yang menjalani terapi hemodialisa sebelum dilakukan
psychological intervention dengan terapi relaksasi
spiritual dzikir (pre-test), rata- rata responden
mengalami kualitas hidup kurang adalah 2,58.
Kualitas hidup pada penderita gagal ginjal kronik
yang menjalani terapi hemodialisa sesudah
dilakukan psychological
intervention dengan terapi relaksasi spiritual dzikir
(post-test), rata- rata responden mengalami kualitas
hidup baik adalah 1,50.
Ada peningkatan kualitas hidup pasien gagal ginjal
kronik yang menjalani terapi hemodialisa terhadap
psychological intervention di Unit Hemodialisa RS Royal
Prima Medan Tahun 2016 dengan nilai p value = 0,002.
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Analisis Jurnal 7

JURNAL

Judul Penelitian

PENINGKATAN KUALITAS HIDUP PADA PENDERITA GAGAL GINJAL

KRONIK YANG MENJALANI TERAPI HEMODIALISA MELALUI
PSYCHOLOGICAL INTERVENTION DI UNIT HEMODIALISA RS ROYAL
PRIMA MEDAN TAHUN 2016

Kata Kunci

Psychological Intervention, Quality of Life, People with CRF, Hemodialysis

Pengarang / Author

Emma Veronika Hutagaol

Tanggal Publikasi

Jurnal JUMANTIK Volume 2 nomor 1, Mei 2017

Kesimpulan

Kualitas hidup pada penderita gagal ginjal kronik yang menjalani terapi hemodialisa
sebelum dilakukan psychological intervention dengan terapi relaksasi spiritual dzikir
(pre-test), ratarata responden mengalami kualitas hidup kurang adalah 2,58. Kualitas
hidup pada penderita gagal ginjal kronik yang menjalani terapi hemodialisa sesudah
dilakukan psychological intervention dengan terapi relaksasi spiritual dzikir (post-test),
ratarata responden mengalami kualitas hidup baik adalah 1,50. Ada peningkatan
kualitas hidup pasien gagal ginjal kronik yang menjalani terapi hemodialisa terhadap
psychological intervention di Unit Hemodialisa RS Royal Prima Medan Tahun 2016
dengan nilai p value = 0,002.
Critical Apraisal
a. Why was this study done?

Gagal ginjal kronik merupakan suatu masalah kesehatan yang penting, mengingat
selain prevalensi dan angka kejadiannya semakin meningkat juga pengobatan pengganti
ginjal yang harus dialami oleh penderita gagal ginjal merupakan pengobatan yang mahal,
butuh waktu dan kesabaran yang harus ditanggung oleh penderita gagal ginjal dan
keluarganya (Harrison, 2013).

Penderita gagal ginjal kronik harus melakukan terapi hemodialisa untuk

memperpanjang usia harapan hidup. Kegiatan ini akan berlangsung terus menerus
sepanjang hidupnya (Smeltzer & Bare, 2002). Oleh karena itu, kebutuhan pasien pada
stadium lanjut suatu penyakit tidak hanya pemenuhan/pengobatan gejala fisik, namun juga
pentingnya dukungan terhadap kebutuhan psikologis, sosial dan spiritual yang dilakukan
dengan pendekatan interdisiplin yang dikenal sebagai perawatan paliatif (Dhina, 2015).

b. What is sample of size ?

Desain penelitian yang digunakan dalam penelitian ini adalah penelitian

praeksperiment dengan menggunakan rancangan one-group pre post test design yang
bertujuan untuk mengetahui peningkatan kualitas hidup pada penderita gagal ginjal kronik
yang menjalani terapi hemodialisa melalui psychological intervention di Unit Hemodialisa
RS Royal Prima Medan Tahun 2016.
Populasi dalam penelitian ini adalah seluruh pasien gagal ginjal kronik yang
menjalani terapi hemodialisa di Unit Hemodialisa RS Royal Prima Medan pada bulan
Maret 2016, jumlah penderita gagal ginjal kronik sebanyak 36 orang. Pengambilan sampel
menggunakan teknik purposive sampling memiliki kriteria inklusi dan kriteria eksklusi.

c. How were the data analyzed?

Uji statistik Wilcoxon, diperoleh bahwa p-value 0,002 (<0,05), yang berarti ada
peningkatan yang signifikan dalam kualitas hidup antara intervensi psikologis dan
kualitas hidup pasien dengan gagal ginjal kronis yang menjalani hemodialisis.

d. Are the measurements of major variables valid &reliable?

Instrumen yang digunakan untuk penelitian variabel sudah valid dan tepat di
karenakan pada penelitian ini sudah menggunakan metode yang sesuai.

e. Were there any untoward events during the conduct of the study?

Untuk kejadian tidak diinginkan ada, seperti lamanya pengumpulan data pada
pasien berusia lebih dari 40 tahun karena pasien mengalami penurunan kualitas hidup
 pada domain fisik seperti ketergantungan pada obat dan bantuan medis, kelelahan, dan
ketidaknyamanan, domain psikologis seperti perasaan negatif dari sisi spiritual, pasien
terkadang merasa Tuhan tidak adil karena mereka menderita penyakit gagal ginjal
kronik dan harus menjalani terapi hemodialisa seumur hidup, pasien juga merasa tidak
berdaya dan tidak mampu lagi menjalani hidup, domain hubungan sosial seperti
dukungan keluarga rendah

f. What does this research mean for clinical practice?

Penelitian ini menyatakan bahwa ada peningkatan kualitas pasien dengan gagal
ginjal kronis yang menjalani hemodialisis hingga intervensi psikologis melalui devosi
dan relaksasi spiritual dapat digunakan sebagai terapi spiritual alternatif untuk
meningkatkan kualitas hidup pasien dengan gagal ginjal kronis.
Jurnal 8
Journal Scientific Solutem
Vol.1 No.1 – Mei – Oktober 2018
p-ISSN : 2620-7702 e-
ISSN : 2621-136X
journal homepage: http://ejurnal.akperbinainsan.ac.id

Pengaruh Pendidikan Kesehatan Sleep Hygien Terhadap Peningkatan Kualitas

Tidur dalam Konteks Asuhan Keperawatan Pada Pasien GGKTA dengan HD di
RSCM Jakarta

1 2 31
Loritta Yemina , Agung Waluyo , Lestari Sukmarini Akademi
2,3
Perawatan RS PGI Cikini, Jakarta Pusat Fakultas Ilmu
Keperawatan Universitas Indonesia, Depok
e-mail: lorittayemima@yahoo.com

Abstrak
Perawat sebagai Pemberian asuhan keperawatan pada pasien Gagal Ginjal KronisTahap Akhir
dengan HD berguna untuk mencegah komplikasi gangguan tidur. Penatalaksanan untuk mencegah
komplikasi pada gangguan tidur non farmakologis adalah pendidikan kesehatan sleep hygiene. Tujuan
pelaksanaan untuk mengidentifikasi pengaruh Pendidikan kesehatan sleep hygien terhadap peningkatan
kualitas tidur dalam konteks asuhan keperawatan pada pasien GGKTA dengan HD. Pelaksanaan
dilaksanakan pada tanggal 30 April sampai dengan 13 Mei 2014 di Unit Hemodialisis Lantai VIII Gedung
PJT RSCM. Jumlah responden 12 orang yang dibagi dalam dua kelompok yaitu 6 orang kelompok
intervensi dan 6 orang kelompok control. Pelaksanaan dievaluasi dengan menggunakan Indeks Kualitas
Tidur Pittsburgh. Hasil evaluasi pada kelompok intervensi didapatkan data penurunan nilai rata-rata
Indeks Kualitas Tidur Pittsburgh yang signifikan yaitu 3,8 poin. Penkes Sleep Hygien dapat diaplikasikan
dan dikembangkan oleh perawat sebagai bagian dari program intervensi manajemen non farmakologis
untuk menigkatkan kualitas tidur pada pasien yang menjalani hemodialisa.

Kata kunci : sleep hygiene, Gagal ginjal Kronis Tahap Akhir, Hemodialisa

Latar Belakang banyak dari mereka yang tidak mengetahui bahwa

Penyakit ginjal tahap akhir bersifat
progresif dan irreversibel dimana kemampuan
tubuh gagal untuk mempertahankan metabolisme
dan keseimbangan cairan dan elektrolit,
menyebabkan uremia atau dikenal dengan retensi
urea dan sampah nitrogen lain dalam darah
( Brunner & Suddarth, 2010). Di Amerika jumlah
penderita gagal ginjal berdasarkan etiologi
hipertensi, glomeruloneritis, kista ginjal dan
Diabetes melitus pada tahun 2009 adalah 116.395
orang (US Renal Data System, 2011
http://www.usrds.org). Sedangkan
menurut Prof. Dr. Suhardjono SpPD. KGH dari
Pernefri, jumlah penderita gagal ginjal kronis
diperkirakan 12,5% dari jumlah seluruh penduduk
Indonesia,
beberapa tahun. Terapi tersebut dapat berupa
terapi konservatif seperti pengaturan diet
maupun terapi pengganti ginjal berupa dialisi
atau transplan ginjal.
Jumlah pasien Gagal Ginjal Kronis Tahap
Akhir (GGKTA) yang mengunakan terapi pengganti
ginjal di Amerika pada thn 2010 per 1000 orang
pertahun adalah pasien hemodialisa 1862 orang
dan pasien CAPD 1630 orang dan pasien
dirinya di vonis gagal ginjal sampai dengan
mereka memeriksakan diri, sehingga harus
menjalani terapi pengganti ginjal.
Ginjal berfungsi sebagai pengaturan
sekresi sampah nitrogen dan produk sampingan
metabolisme. Peran perawat yaitu memberikan
Asuhan Keperawatan yang adekuat mencangkup
masalah keseimbangan cairan dan masalah
keperawatan penyerta lainnya. Pasien gagal
ginjal tahap akhir akan mengalami penurunan
fungsi ginjal, sehingga tidak dapat melaksanakan
fungsinya secara adekuat. Oleh karena itu
diperlukan terapi pengganti ginjal untuk dapat
mempertahankan atau
meningkatkan kualitas hidup sampai
transplantasi ginjal 805 orang (US Renal Data
System, 2011
http://www.usrds.org) . Berdasarkan data tersebut
maka terapi pengganti ginjal yang paling banyak
digunakan adalah hemodialisa. Data dari Indonesian
Renal Registrasy (IRR) pada tahun 2009 tercatat 12.900
pasien gagal ginjal terminal menjalani terapi
hemodialisis dan pada tahun 2011 meningkat sebesar
72,9 %
menjadi 22.304 pasien (IRR, 2011). Berdasarkan
lokasi pelaksanaan EBN, rata-rata jumlah pasien
yang menjalani hemodialisis rutin di Rumah Sakit
Cipto Mangunkusumo Jakarta adalah 192 orang
setiap bulannya.
Dialisis merupakan suatu proses yang
digunakan untuk mengeluarkan cairan dan produk
limbah dari dalam tubuh akibat ginjal tidak
mampu melaksanakan proses tersebut (Brunner &
Suddarth, 2010). Tindakan Terapi hemodialisa
memiliki komplikasi yaitu ketidakseimbangan
cairan,
ketidakseimbangan elektrolit, infeksi dan
perdarahan. tanda dan gejala yang dapat
ditemukan antara lain kelemahan tubuh, anemia,
gangguan tidur, kram otot dan hipotensi.
Peran perawat melalui
memberikan pelayanan kesehatan pada pasien
saat melaksanakan hemodialisa sangat penting
yaitu berupa asuhan keperawatan yang aman
untuk mencegah kelanjutan komplikasi.
Komplikasi gangguan tidur pada pasien Gagal
Ginjal Kronis Tahap Akhir yang menjalani
hemodialisa wajib diatasi sejak dini. Menurut
Sabri, 2010 bahwa pasien Gagal Ginjal Kronis
Tahap Akhir secara langsung mempengaruhi
kualitas tidur dengan presentasi sebanyak 79,5%.
Data yang ditemukan dilapangan dari 58 pasien
yang diwawancara terdapat 18 pasien (31,03%)
yang mengalami gangguan tidur. Keluhan
terutama dirasakan 1 hari menjelang pasien akan
HD, adapun penatalaksanaan dilapangan masih
sejauh pendidikan kesehatan agar membatasi
cairan dengan maksud dengan cairan tubuh yang
adekuat pasien tidak sesak atau batuk sehingga
bisa istirahat dengan adekuat.
Sementara itu secara umum keluhan
yang paling sering dilaporkan pada pasien
gangguan tidur pada pasien gangguan fungsi
ginjal adalah insomnia, sindroma kaki gelisah,
pola pernafasaan tidak teratur saat tidur dan rasa
mengantuk yang berlebihan di siang hari.
Penyebab yang berkontribusi terhadap gangguan
tidur antara lain psikologis seperti cemas dan
depresi, dan secara fisik seperti hipertensi,
kejang otot dan ketidakseimbangan elektrolit
atau cairan tubuh.
Penatalaksanan untuk mencegah
komplikasi pada gangguan tidur adalah dibagi
atas dua yaitu farmakologis dan non farmakologis
(Petit, 2004). Pada EBN ini peneliti ingin
memberikan intervensi secara nonfarmakologis
salah satunya adalah pendidikan kesehatan sleep
hygiene. Pendidikan kesehatan Sleep hygiene
adalah pendidikan pola tidur yang sehat kepada
pasien yang mengalami gangguan tidur.Tujuan
meningkatkan kualitas tidur pada pasien GGK
dengan hemodialisis (Saaedi, 2014)

Metode
Penerapan Evidence Based Nursing Sleep
Hygiene untuk meningkatkan kualitas tidur pasien
Gagal Ginjal Kronis Tahap Akhir yang menjalani
hemodialisis di Unit Hemodialisis Lantai VIII
Gedung PJT RSUPM Dr. Cipto Mangunkusomo.
Kegiatan ini diawali dengan berkonsultasi dengan
supervisor utama, supervisor akademik dan
supervisor lahan. Selanjutnya praktikan meminta
izin penerapan Sleep Hygiene kepada Ka Ruangan
Hemodialisis dan Ka. Instalasi Pelayanan Unit
Hemodialisis RSUPM Dr. Cipto Mangunkusomo.
Setelah mendapatkan izin Penerapan ini pertama praktikan melakukan pengukuran kualitas tidur
maka peneliti menjelaskan rencana program dengan alat ukur Indeks Kualitas Tidur Pittsburgh.
Penerapan EBN Sleep Hygiene kepada tim Pengukuran kualitas tidur sebelum (pre tes) intervensi sleep
kesehatan yang ada di pelayanan dengan hygiene. Kedua praktika melakukan 6 sesi Sleep Hygiene,
harapan dapat meneruskan program edukasi yang selama 30 setiap sesinya. Selanjutnya praktikan kembali
akan dilakukan. mengukur kualitas tidur sesudah (post tes) ke 6 sesi intervensi
Praktikan melibatkan pasien Sleep Hygiene diberikan.
Hemodilaisis Rawat Jalan sebagai sampel dalam Pittsburgh Sleep Quality Index (PSQI) adalah
penerapan evidence based Sleep Hygiene. Jumlah pengukuran kualitas tidur. Terdiri atas 10 pertanyaan dengan
pasien yang terlibat dalam 12 orang, dengan 7 komponen. Cara penghitungan PSQI adalah range nilai 0 sd/
perincian 6 orang pada kelompok kontrol (tanpa 21. Pasien dengan nilai PQSI < 5 dinyatakan mengalami
intervensi) dan 6 orang pada kelompok intervensi. gangguan tidur. Hasil penilaian didasari atas 7 komponen:
Kriteria inklusi pasien yang terlibat yaitu status kualitas tidur subjektif,
hemodinamik stabil, tidak mengalami gangguan tidur laten, lama tidur, kebiasaan untuk
proses pikir, rutin melakukan terapi Hemodialisis
2 x seminggu, telah menjalani Hemodialisis
selama 6 bulan s/d 11 tahun.
Kegiatan Sleep Hygiene diawali dengan
menjelaskan tujuan, manfaat dan prosedur
pelaksanaan terdiri atas 6 sesi Sleep Hygiene
yang dilakukan dalam 3 minggu. Pelaksanaannya
 tenaga kesehatan dan sebagai Perempuan 3 4
alat pengkajian untuk mengukur
gangguan tidur yang berdampak Laki-laki 3 2
pada kualitas tidur
Jumlah (F) 6 6
Hasil Pendidikan Terakhir
Berikut variabel
pasien SD 0 1
yang SMP 0 2
menjalani EBN Sleep Hygiene
SMU 5 2
Tabel-1 Distribusi responden
berdasarkan Usia, Jenis Kelamin, Perguruan Tinggi 1 1
Pendidikan Terakhir dan Lama Jumlah (F) 6 6
menjalani Hemodialisis di Unit
Hemodialisis RSUPM Dr. Cipto Lama menjalani HD

Mangunkusomo tahun 2014 1 – 5 thn 2 3

Variabel Kelompok
Kelompok >5 thn 4 3

Intervensi Jumlah (F) 6 6

Berikut hasil penerapan EBN Sleep
Kontrol Hygiene terhadap kualitas tidur pasien Gagal
Ginjal Kronis dengan Hemodialisis yang
Usia dilaksanakan pada tanggal 30 April sampai
dengan 13 Mei 2014 di Unit Hemodialisis
18 – 40 thn 0 Lantai VIII Gedung PJT RSCM.
Tabel-2 Nilai Kualitas Tidur Pasien Gagal Ginjal
41 – 65 thn 6 Kronis dengan Hemodialisis Sleep Hygiene di
Jumlah (F) 6 Unit Hemodialiasa RSUPM Dr.

Jenis Kelamin Cipto Mangunkusumo April-Mei 2014 (n = 6)

Kualitas Tidur
efektifitas tidur, gangguan saat tidur, Nama Sebelum Sesudah
No Pasie Penurunan
n Sleep Sleep

penggunaan obat tidur dan gangguan pada Hygiene Hygiene

saat tidur siang.
Tujuannya antara lain mengukur kualitas 1 Ny.U 13 7 6
tidur yang valid, mudah digunakan dan sesuai
standar, membedakan antara orang dengan 2 Tn. A 16 8 10
kualitas tidur baik atau kualitas tidur buruk,
dikembangkan untuk memudahkan digunakan 3 Ny. J 12 8 4
oleh responden, peneliti dan
4 Tn. M 11 9 2

5 Tn. J 13 11 2

6 Ny. V 7 8 +1

Rata Rata 12 8,2 3,8

Grafik-1 Kualitas Tidur Pasien Gagal Ginjal Kronis
dengan Hemodialisis dengan Sleep Hygiene di
Unit Hemodialiasa RSUPM Dr. Cipto
Mangunkusumo April-Mei 2014 (n = 6)
 Nama Kualitas Tidur
No Penurunan
Pasien Sebelum Sesudah
2 Tn. H 15 15 0

3 Ny. R 15 13 2

4 Tn. A 13 13 0

5 Ny. J 10 8 2
6 Ny. Y 12 10 2
Rata Rata 13,2 11,8 0,7

Tabel-3 menunjukan bahwa rata-

rata kualitas tidur pasien kelompok kontrol
sebelum 13,2 dan rata-rata kualitas tidur
pasien setelah 11,8. Pasien mengalami rata-
rata penurunan gangguan tidur 0,7. Dengan
grafik 3.2 menggambarkan perubahan tingkat
kualitas tidur.
Grafik-2 Kualitas Tidur Pasien Gagal Ginjal
Kronis dengan Hemodialisis tanpa Sleep
Hygiene di Unit Hemodialiasa RSUPM Dr. Cipto
Mangunkusumo April- Mei 2014 (n = 6)

Tabel-3 menunjukan rata-rata kualitas

tidur pasien sebelum intervensi Sleep Hygiene 12
dan rata-rata kualitas tidur pasien setelah
intervensi Sleep Hygiene 8,2. Pasien setelah
intervensi Sleep Hygiene mengalami penurunan
gangguan tidur dengan rata-rata penurunan 3,8.
Grafik-1 menggambarkan kualitas tidur sebelum
intervensi Sleep Hygiene dengan kualitas tidur
setelah intervensi Sleep Hygiene.
Kegiatan pada kelompok kontrol hanya
pengukuran kualitas tidur di minggu pertama (pre
test) dan minggu ke tiga (post tes) tanpa
diberikan intervensi Sleep Hygiene. Berikut
kualitas tidur pasien Gagal Ginjal Kronis dengan
Hemodialisis pada kelompok kontrol.
Tabel-3. Nilai Kualitas Tidur Pasien Gagal Ginjal
Kronis dengan Hemodialisis di Unit Hemodialiasa
RSUPM Dr. Cipto
Mangunkusumo April-Mei 2014 (n = 6) Berdasarkan tabel dan grafik diatas
Nama Kualitas Tidur dapat digambarkan bahwa kualitas tidur pada
No Penurunan kelompok intervensi mengalami peningkatan
Pasien Sebelum Sesudah dengan rata-rata 3,8. Pada kelompok kontrol
mengalami peningkatan kualitas tidur dengan
1 Ny.P 14 12 2 rata- rata nilai 0,7.

adekuat dapat menciptka perbaikan kondisi
kejiwaan dan fungsi fisik. Pasien Gagal Ginjal
Kronis Tahap Akhir secara langsung
mempengaruhi kualitas tidur dengan presentasi
sebanyak 79,5% (Sabri 2010). Gangguan tidur
Pembahasan
Manfaat pendidikan Sleep Hygiene
bagi pasien Gagal Ginjal Kronis tahap Akhir
adalah meningkatkan kualitas tidur dan
memperbaiki kualitas hidup. Kualitas tidur
yang baik memberi dampak pada kualitas
hidup karena tidur yang
terutama dirasakan
1 hari menjelang pasien akan HD. Gangguan tidur yang
tidak diatasi dengan segera akan menyebabkan
menurunkan kualitas hidup dan meningkatkan angka
mortalitas (Baraz, 2007).
 Oleh karena itu dibutuhkan intervensi
yang tepat untuk mengatasi gangguan tidur salah
satunya pendidikan Sleep Hygiene. Pendidikan
Sleep Hygiene merupakan pendekatan terapi
tidur berdasarkan gaya hidup pasien dan
modifikasi lingkungan untuk
memaksimalkan kualitas tidur pasien.
Berdasarkan data responden intervensi
ditemukan faktor-faktor yang mempengaruhi
Gangguan tidur responden yang terlibat dalam
Edukasi Sleep Hygiene antara lain pertama
komorbiditas. 100% pasien Gagal Ginjal dengan
Terapi Hemodialisis mengalami Komorbiditas.
Adapun penyakit yang menyertai 66,7%
mengalami Hipertensi dan 33,3% mengalami
Diabetes melitus. Hal ini didukung dengan
etiologi insomnia pada pasien gangguan ginjal
mencangkup faktor biologi, gaya hidup dan atau
psikologis (Tatomir, 2007). Berdasarkan End Stage
Renal Disease Secerity Index ditemukan
predisposisi gangguan tidur pada pasien gagal
ginjal dengan hemodialisis salah satunya adalah
komorbiditas (Mucsi, 2004).
Faktor kedua adalah usia. Peningkatan
usia akan berdampak 51% pada peningkatan
resiko insomnia. Gangguan tidur berhubungan
erat dengan usia lanjut khususnya pada pasien
kronik uremik (Santo, 2005). Fungsi tubuh
menurun pada usia > 40 tahun sehingga
mempengaruhi proses adaptasi tubuh untuk tidur
menurun. Data hasil observasi pasien kelompok
kontrol memiliki usia 54 s/d 65 tahun, sedangkan
kelompok intervensi 29 s/d 65 tahun.
Faktor ketiga adalah lama menjalani
hemodialisis. Lama menjalani hemodialisis
diartikan dalam frekuensi
Pittsburg menunjukan bahwa 20% gangguan tidur
disebabkan oleh depresi. Data pengkajian
menyatakan terdapat 2 pasien mengalami depresi
terutama pada pasien baru menjalani hemodialisa
< 2 tahun. Hal ini disebabkan kedua pasien
tersebut merasa rendah diri karena sudah tidak
mampu melakukan aktivitas seperti bisaannya
akibat wajib menjalani hemodialisis secara rutin.
Faktor ketujuh merupakan keluhan
terbanyak gangguan tidur yaitu Sindrom Restless
leg. Sindrom Restless leg merupakan gangguan
motorik pergerakan tungkai kaki disertai
gangguan rasa nyaman yang terjadi pada saat
tubuh beristirahat. Hal ini menyebabkan
penurunan kulalitas tidur karena gangguan rasa
nyaman yang dihadapi pasien. Restless leg juga
terjadi pada pasien dengan defisit ion besi pada
pasien anemia. Data menunjukan terdapat 50%
mengalami keluhan nyeri, kram dan rasa tidak
nyaman pada kaki. Keluhan dirasakan setelah
pasien menjalani terapi hemodialisis dalam 1
minggu. Berdasarkan data pengkajian pasien yang
terlibat dalam EBN Sleep Hygiene baik kelompok
kontrol maupun kelompok intervensi menjalani
terapi hemodialisis 2x/minggu dengan waktu
pelaksanaan 5 jam. Hasil observasi menunjukan
bahwa semua pasien kelolaan EBN rutin menjalani
Hemodialisis sesuai jadwal dan durasi 5 jam,
namun yang menyebabkan terjadi peningkatan
Toksik uremik adalah kepatuhan pasien
membatasi minuman dan diet yang adekuat. 80%
pasien mengalami kesulitan membatasi cairan
ditandai dengan peningkatan Berat Badan
Intradialitik > 5% Berat Badan Kering (Santo,
2005).
Faktor keempat adalah lama pengobatan
dialisa. Lama pengobatan dialisa ditemukan pada
kelompok intervensi 1 s/d 11 tahun sementara
pasien kelompok kontrol 2 s/d 11 tahun.
Penelitian sebelumnya yang dilakukan oleh
Tatomir, 2007 menyatakan bahwa semakin lama
pasien menjalani terapi dialisis sebagai pengganti
ginjal, maka makin besar resiko terjadi gangguan
kualitas tidur. Hasil penelitian
menemukan 66,7% pasien dengan terapi
hemodialisis lebih dari 10 tahun beresiko lebih
tinggi mengalami gangguan tidur. Hal ini
dikarenakan terjadinya komplikasi tindakan
hemodialisis yaitu aterosklerosis. Aterosklerosis
yaitu kekakuan pembuluh darah yang
menyebabkan perfusi tidak adekuat ke seluruh
tubuh sehingga dibutuhkan banyak energi untuk
memenuhi perfusi didalam tubuh. Energi yang
kurang menyebabkan pasien hemodialisis mudah
kelelehan didukung dengan anemia sehingga
kualitas tidur pasien tidak adekuat.
Faktor pendukung kelima gangguan tidur
lainnya adalah Depresi. Gangguan depresi pada
pasien CKD dengan Hemodialisis disebabkan
karena gangguan psikologis dan mental
berhubungan rutinitas terapi hemodialisis yang
membuat pasien jenuh. Depresi yang dihadapi
pasien CKD menyebabkan insomnia. Menurut
Illiesco, 2003 hasil penghitungan skala kualitas
tidur
Hemodialisis atau saat pasien sedang Tidur.
Pelaksanaan Evidance Base Nursing Sleep
Hygine dievaluasi dengan menggunakan Indeks Kualitas
Tidur Pittsburgh. Hasil evaluasi pada kelompok
intervensi didapatkan data penurunan nilai rata-rata
Indeks Kualitas Tidur Pittsburgh yang signifikan yaitu 3,8
poin, sedangkan pada kelompok Kontrol didapatkan
penurunan kadar ureum rata-rata 0,7 point. Dengan
demikian terdapat perbedaan pencapaian penurunan
gangguan tidur kualitas tidur sebesar 3,1 poin.
Pelaksanaan edukasi Sleep Hygiene member dampak
pada modifikasi pola hidup pasien dengan tujuan
meningkatan kualitas tidur khususnya pasien Gagal
Ginjal Kronik dengan Hemodialisis.
Pada penelitian sebelumnya yang dilakukan
oleh Soheila (2014) Gambaran nilai rata-rata kualitas
tidur kedua kelompok sebelum intervensi tidak terdapat
perbedaan yang signifikan. Namun setelah diberikan
intervensi pendidikan Sleep Hygiene nilai rata-rata
kualitas tidur kelompok intervensi berkurang secara
signifikan dibanding dengan kelompok kontrol.
Nilai
Tingkat kepatuhan pasien dalam
melaksanaakan Sleep Hygiene ditentukan pada
beberapa hal berikut ini antara lain patuh
menjalani terapi hemodialisa sesuai yang
diprogramkan, dukungan keluarga, tidak
mengkonsumsi makanan 2 jam sebelum tidur.
Kepatuhan menjalani terapi hemodialisa sesuai
yang diprogramkan ditandai dengan tercapainya
adekuasi dan Berat badan intradialitik < 5%.
Pasien yang tidak patuh menjalani program terapi
hemodialisa menyebabkan penimbunan toksik
uremik yang mencetuskan gejala gangguan tidur.
Sehingga dibutuhkan kolaborasi tindakan
hemodialisis untuk toksik uremic dalam tubuh
pasien. Selanjutnya perlunya dukungan keluarga
agar tercipta lingkungan kamar yang adaptif
dengan tidak meletakan TV dikamar tidur
dan mengurangi
penerangan saat tidur. Disisi lain keluarga juga
menjadi tempat bagi pasien untuk berbagi
perasaan pasien yang harus menjalani
intervensi 9,92±3,80 dibanding kelompok kontrol
13,05 ± 4,28. Pada pelaksanaan EBN ini belum
bisa mencapai hasil yang maksimal seperti yang
dilakukan oleh penelitian Soheila (2014).
Perbedaan hasil yang praktikan dapatkan pada
EBN ini sebesar kelompok Kontrol 15 ± 8
sedangkan kelompok Intervensi 16 ± 8. Hasil
tersebut disebabkan oleh beberapa kendala.
Kendala mahasiswa dengan responden
antara lain pasien di unit Hemodialisis
beranggapan masalah gangguan tidur merupakan
sesuatu yang wajar diderita bagi mereka yang
lanjut usia. Sehingga gangguan tidur dianggap
bukan masalah besar, bagi pasien di unit
hemodialisis kelebihan cairan merupakan masalah
utama bagi mereka. Kendala kedua adalah pada
penerapan penelitian program pendidikan sleep
hygiene sebelumnya dilakukan dalam 6 sesi
selama 30 hari. Sedangkan penerapan program
pendidikan sleep hygine yang penulis lakukan
berlangsung 6 sesi selama 15 hari. Penyebabnya
adalah proses pencarian jurnal dan konsultasi
proposal yang cukup lama. Hal ini menyebabkan
hasil pendidikan sleep hygine yang diberikan
kepada responden tidak memiliki hasil yang
maksimal, jika dibandingkan dengan hasil
penelitian sebelumnya.
Sementara kendala perawat dengan unit
kerja antara lain pertama belum ada perawat
pendidik yang secara khusus memberikan
pendidikan kesehatan tentang gangguan tidur.
Kedua belum tersediannya media pendidikan
kesehatan tentang gangguan tidur pada pasien
hemodialisa. Ketiga belum tersedia kelompok
kerja perawat yang khusus memberikan edukasi.
Berdasarkan obeservasi edukasi diberikan oleh
semua perawat yang bertugas saat itu juga sambil
mengerjakan tugas rutin tanpa disediakan media
pendidikan kesehatan, atau pendidikan kesehatan
diberikan secara lisan saja. Oleh sebab itu ada
baiknya bila dibentuk tim edukasi yang
diperlengkapi dengan media yang praktis untuk
digunakan dalam penerapan peran perawat
sebagai pendidik.
hemodialisis. Hal ini ditunjukan oleh hasil evaluasi Tn A
salah satu responden intervensi yang mengalami
penurunan sebanyak 8 poin (16 – 8).
Faktor pendukung Tn A (54 thn) adalah keluarga
yang selalu mendampingi yaitu istrinya. Istri Tn A
membantu memotivasi lingkungan kamar Tn A dengan
memindahkan TV dikamar dan selalu mendamping Tn A
sebagai teman berbagi. Faktor pendukung lainnya adalah
motivasi Tn A untuk memperoleh kualitas tidur yang
adekuat. Tn A memiliki rasa ingin tau yang tinggi
tentang intervensi penanganan gangguan tidur, sehingga
Tn A patuh mempraktikkan intervensi yang disarankan.
Hal ini ditunjukan dengan penurunan angka gangguan
tidur yaitu sebanyak 8 poin.
Ada beberapa hal yang menjadi perhatian agar
terciptanya program pendidikan sleep hygine yang
berkesinambungan yaitu selain memberikan pendidikan
sleep hygine, perawat juga harus melakukan evaluasi
terhadap pendidikan tersebut untuk melihat dampak
dari program pendidikan sleep hygine yang telah
diberikan. Terakhir karena pendidikan yang baik adalah
pendidikan yang berkelanjutan maka diperlukan penyegaran materi
penatalaksanaan gangguan tidur didukung dengan
hasil-hasil penelitian terkait.

Penutu
p
Simpul
an
Kualitas tidur yang adekuat merupakan
suatu hal yang harus dipatuhi oleh pasien yang
menjalani hemodialisis. Pola tidur yang sehat
dilakukan untuk mencegah timbulnya penurunan
kualitas hidup pasien hemodialisa yang ditandai
dengan keluhan depresi, gangguan kardiovaskular
dan angka harapan hidup yang rendah.
Kondisi ini dapat memicu terjadinya
gejala pusing, mengantuk disiang hari, resiko
jatuh dan gambaran lelah. Tenaga kesehatan
sering menghadapi insomnia primer dan
sekunder, terutama di kalangan lanjut usia.
Intervensi farmakologi mungkin tampak efektif
dalam beberapa situasi, namun dapat juga
merugikan pasien terkait efek sampingnya.
Menilai sifat insomnia dengan
menggunakan alat penilaian efektif seperti buku
harian tidur atau Pittsburgh Sleep Quality Index
dan memberikan pasien dengan perawatan
nonfarmakologi. Perawatan non-farmakologi yang
paling sering digunakan termasuk stimulus
kontrol, pembatasan tidur, pendidikan sleep
hygiene, terapi kognitif, multi- komponen terapi,
paradoks niat dan terapi relaksasi.
Hal ini menunjukkan bahwa non-
Farmakologi perawatan untuk insomnia primer
dan sekunder adalah alternatif yang layak dan
efektif dibanding penggunaan benzodiazepin
khususnya dalam mengelola pasien yang lebih tua
dengan insomnia. Adapun Saran yang diberikan
adalah perlu adanya penelitian- penelitian
lanjutan terhadap terapi nonfarmakologis dalam
hal peningkatan kualitas tidur pada pasien
hemodialysis.
Saran
Perawat diharapkan dapat melakukan
evaluasi dan kajian ilmiah terhadap penerapan
intervensi keperawatan yang
sudah ada. Perawat hendaknya dapat
memanfaatkan hasil
 temuan ilmiah berbasis Evidence Base Praktice
dalam melakukan asuhan keperawatan terhadap
pasien.

Daftar Pustaka
[1] Cognitive Behavioral therapy for sleep
Disturbance in patients Undergoing Peritoneal
Dialysis : A Pilot Randomized Controlled Trial.
Oleh Hung Yuan Chen, Chih Kan Ching, Hsin
hao. Sumber : American Journal of Kidney
Diseases , 2008 Agustus; 52 (2): 314-323.
[2] “Sleep Hygiene Training Program for Patients
on Hemodialysis” oleh: Maryam, S. Soheila, S.
Poran, V, F. Farshid, H. Sumber : Iranian
Journal of Kidney Diseases , 2014 Januari; 8
(1): 65-69.
[3] Smeltzer, Suzanne C. (2001). Brunner &
Suddarth’s Textbook of Medical Surgical
Nursig. (dr. H. Y. Kuncara, Penerjemah)
Volume II Eight Edition. Philadelphia :
Lippincott-Raven Publisher. (sumber asli
diterbitkan 1996).
[4] Smeltzer, S.C., Bare, B.G., Hinkle, JL.,
Cheerver, K.H. (2008). Brunner & Suddarth’s:
Textbook of medical- surgical nursing. 11th ed.
Philadelphia: Lippincott Williams & Walkins

Analisis Jurnal 8

1. Judul Penelitian
Pengaruh Pendidikan Kesehatan Sleep Hygien Terhadap Peningkatan Kualitas Tidur dalam
Konteks Asuhan Keperawatan Pada Pasien GGKTA dengan HD di RSCM Jakarta
2. Kata Kunci
sleep hygiene, Gagal ginjal Kronis Tahap Akhir, Hemodialisa
3. Pengarang / Author
Loritta Yemina, Agung Waluyo2, Lestari Sukmarini3, Akademi Perawatan RS PGI Cikini,
Jakarta Pusat, Fakultas Ilmu Keperawatan Universitas Indonesia, Depok
4. Tanggal Publikasi
Journal Scientific Solutem Vol.1 No.1 – Mei – Oktober 2018
p-ISSN : 2620-7702
e-ISSN : 2621-136X
5. Kesimpulan
Kualitas tidur yang adekuat merupakan suatu hal yang harus dipatuhi oleh pasien
yang menjalani hemodialisis. Pola tidur yang sehat dilakukan untuk mencegah timbulnya
penurunan kualitas hidup pasien hemodialisa yang ditandai dengan keluhan depresi,
gangguan kardiovaskular dan angka harapan hidup yang rendah. Kondisi ini dapat memicu
terjadinya gejala pusing, mengantuk disiang hari, resiko jatuh dan gambaran lelah. Tenaga
kesehatan sering menghadapi insomnia primer dan sekunder, terutama di kalangan lanjut
usia. Intervensi farmakologi mungkin tampak efektif dalam beberapa situasi, namun dapat
juga merugikan pasien terkait efek sampingnya.
Menilai sifat insomnia dengan menggunakan alat penilaian efektif seperti buku harian
tidur atau Pittsburgh Sleep Quality Index dan memberikan pasien dengan perawatan
nonfarmakologi. Perawatan non-farmakologi yang paling sering digunakan termasuk
stimulus kontrol, pembatasan tidur, pendidikan sleep hygiene, terapi kognitif, multi
komponen terapi, paradoks niat dan terapi relaksasi.
Hal ini menunjukkan bahwa non- Farmakologi perawatan untuk insomniabprimer dan
sekunder adalah alternatif yang layak dan efektif dibanding penggunaan benzodiazepin
khususnya dalam mengelola pasien yang lebih tua dengan insomnia. Adapun Saran yang
diberikan adalah perlu adanya penelitian- penelitian lanjutan terhadap terapi
nonfarmakologis dalam hal peningkatan kualitas tidur pada pasien hemodialysis.

6. Critical Apraisal
a. Why was this study done?
Penyakit ginjal tahap akhir bersifat progresif dan irreversibel dimana kemampuan tubuh gagal untuk
mempertahankan metabolisme dan keseimbangan cairan dan elektrolit, menyebabkan uremia atau
dikenal dengan retensi urea dan sampah nitrogen lain dalam darah ( Brunner & Suddarth, 2010).
Sementara itu secara umum keluhan yang paling sering dilaporkan pada pasien gangguan tidur pada
pasien gangguan fungsi ginjal adalah insomnia, sindroma kaki gelisah, pola pernafasaan tidak teratur
saat tidur dan rasa mengantuk yang berlebihan di siang hari. Penatalaksanan untuk mencegah
komplikasi pada gangguan tidur adalah dibagi atas dua yaitu farmakologis dan non farmakologis
(Petit, 2004).

Pada EBN ini peneliti ingin memberikan intervensi secara nonfarmakologis salah satunya adalah
pendidikan kesehatan sleep hygiene. Pendidikan kesehatan Sleep hygiene adalah pendidikan pola tidur
yang sehat kepada pasien yang mengalami gangguan tidur.Tujuan meningkatkan kualitas tidur pada
pasien GGK dengan hemodialisis (Saaedi, 2014).

b. What is sample of size ?

c. Pelaksanaan dilaksanakan pada tanggal 30 April sampai dengan 13 Mei 2014 di Unit
Hemodialisis Lantai VII Gedung PJT RSCM. Jumlah responden 12 orang yang dibagi
dalam dua kelompok yaitu 6 orang kelompok intervensi dan 6 orang kelompok control.
Pelaksanaan dievaluasi dengan menggunakan Indeks Kualitas Tidur Pittsburgh.
Penerapan Evidence Based Nursing Sleep Hygiene untuk meningkatkan kualitas tidur
pasien Gagal Ginjal Kronis Tahap Akhir yang menjalani hemodialisis di Unit
Hemodialisis Lantai VIII Gedung PJT RSUPM Dr. Cipto Mangunkusomo.
d. How were the data analyzed?
Kegiatan ini diawali dengan berkonsultasi dengan supervisor utama, supervisor
akademik dan supervisor lahan. Selanjutnya praktikan meminta izin penerapan Sleep
Hygiene kepada Ka Ruangan Hemodialisis dan Ka. Instalasi Pelayanan Unit
Hemodialisis RSUPM Dr. Cipto Mangunkusomo.

e. Are the measurements of major variables valid &reliable?

Instrumen yang digunakan untuk penilaian variabel sudah valid/tepat.
Instrumen yang digunakan reliable/mampu menampilkan/memberikan makna yang
sama ketika digunakan oleh semua responden
f. Were there any untoward events during the conduct of the study?
Persetujuan diperoleh dari Instansi terkait studi. Seorang peneliti menjelaskan
penelitian ini kepada calon peserta, dan informed consent tertulis telah diperoleh
 sebelumnya. Identitas pribadi subjek dilindungi karena semua data diidentifikasi
hanya berdasarkan jumlah kasus, sehingga kerahasiaan terjamin. Mereka diberi
kesempatan untuk mengajukan pertanyaan, dan diberi tahu bahwa mereka dapat
menarik diri dari penelitian ini kapan pun tanpa efek samping pada perawatan
mereka selanjutnya. Semua hasil untuk penelitian ini dilaporkan sebagai agregat.
Selain itu, jika subjek mendeteksi efek merugikan dari latihan Hatha Yoga yang
tidak diinginkan atau tidak diantisipasi, maka intervensi segera dihentikan.
Kegiatan Sleep Hygiene diawali dengan menjelaskan tujuan, manfaat dan
prosedur pelaksanaan terdiri atas 6 sesi Sleep Hygiene yang dilakukan dalam 3
minggu. Pelaksanaannya pertama praktikan melakukan pengukuran kualitas tidur
dengan alat ukur Indeks Kualitas Tidur Pittsburgh. Pengukuran kualitas tidur
sebelum (pre tes) intervensi sleep hygiene. Kedua praktika melakukan 6 sesi Sleep
Hygiene, selama 30 setiap sesinya. Selanjutnya praktikan kembali mengukur
kualitas tidur sesudah (post tes) ke 6 sesi intervensi Sleep Hygiene diberikan.
g. How do the results fit with previous search in the area?
keluhan yang paling sering dilaporkan pada pasien gangguan tidur pada pasien
gangguan fungsi ginjal adalah insomnia, sindroma kaki gelisah, pola pernafasaan
tidak teratur saat tidur dan rasa mengantuk yang berlebihan di siang hari. Penyebab
yang berkontribusi terhadap gangguan tidur antara lain psikologis seperti cemas
dan depresi, dan secara fisik seperti hipertensi, kejang otot dan ketidakseimbangan
elektrolit atau cairan tubuh.
KGH dari Pernefri, jumlah penderita gagal ginjal kronis diperkirakan 12,5%dari
jumlah seluruh penduduk Indonesia, banyak dari mereka yang tidak mengetahui
bahwa dirinya di vonis gagal ginjal sampai dengan mereka memeriksakan diri,
sehingga harus menjalani terapi pengganti ginjal.
Tujuan pelaksanaan untuk mengidentifikasi pengaruh Pendidikan kesehatan sleep
hygien terhadap peningkatan kualitas tidur dalam konteks asuhan keperawatan pada
pasien GGKTA dengan HD.
h. What does this research mean for clinical practice?
Hasil evaluasi pada kelompok intervensi didapatkan data penurunan nilai rata-rata
Indeks Kualitas Tidur Pittsburgh yang signifikan yaitu 3,8 poin. Penkes Sleep
Hygien dapat diaplikasikan dan dikembangkan oleh perawat sebagai bagian dari
program intervensi manajemen non farmakologis untuk menigkatkan kualitas tidur
pada pasien yang menjalani hemodialisa.
Jurnal 9

Kebutuhan Spiritual pada Pasien Kanker

Aan Nuraeni, Ikeu Nurhidayah, Nuroktavia Hidayati, Citra Windani Mambang Sari,
Ristina Mirwanti
Fakultas Keperawatan Universitas Padjadjaran
E-mail: aan.nuraeni@fkep.unpad.ac.id

Abstrak

Spiritual care merupakan hal yang penting bagi pasien kanker. Namun pelayan keperawatan masih terfokus
pada aspek fisik, sehingga data mengenai kebutuhan spiritual pasien kanker di Indonesia belum komprehensif.
Penelitian ini bertujuan mengidentifikasi kebutuhan spiritual pada pasien kanker serta tingkat kebutuhannya.
Penelitian deskriptif kuantitatif ini melibatkan 76 pasien kanker yang sedang menjalani perawatan di salah satu
RS di Bandung yang diambil dengan accidental sampling. Data dikumpulkan dengan menggunakan instrumen
Spiritual Needs Questionaire 2.1 (SPNQ 2.1) yang meliputi aspek religi, kedamaian dan eksistensi diri. Analisa
data kebutuhan spiritualitas menggunakan distribusi frekuensi dan persentase, sedangkan nilai rerata
digunakan untuk mengidentifikasi seberapa kuat kebutuhan spiritual tersebut bagi responden dengan kategori
1 – 1,9 agak dibutuhkan; 2 – 2,9 dibutuhkan; 3 sangat dibutuhkan. Hasil penelitian menunjukkan bahwa pada
aspek religi, berdoa dengan orang lain dan seseorang berdoa untuk responden memiliki persentase paling
tinggi (96,05%). Pada aspek kedamaian, tinggal di tempat yang tenang dan damai serta menemukan kedamaian
batin memiliki persentase paling tinggi (89,47%). Pada aspek eksistensi diri, menemukan makna dalam sakit
dan penderitaan memiliki persentase paling tinggi (94,74%). Adapun pada kebutuhan untuk memberi, beralih
menjadi orang yang penuh cinta kasih memiliki persentasepalingtinggi (89,47%). Kebutuhan
tersebutmasukkedalamkategoridibutuhkandengannilai rerata sebagai berikut : kebutuhan religi (2,28±0,47);
kedamaian (2,19±0,47); eksistensi diri (2,11±0,76); dan kebutuhan untuk memberi (2,08±0,55). Penelitian ini
menunjukkan bahwa semua dimensi kebutuhan spiritual sangat dibutuhkan oleh responden, dan kebutuhan
religi merupakan kebutuhan yang paling banyak dipilih dan dirasakan paling dibutuhkan.
Kata kunci: Kanker, kebutuhan spiritual, pasien.

Spiritual Needs of Patients with Cancer

Abstract

Cancer affects a patient’s various life aspects, physical, psychological, as well as spiritual. However, more
often than not, nursing care focuses only on the physical aspect, and neglects the spiritual side. This study
aimed to identify the types and levels of spiritual needs affecting cancer patients. This quantitative descriptive
study involved 76 cancer patients, selected using accidental sampling method, who were undergoing treatment
in a hospital in Bandung, West Java. Data were collected using Spiritual Needs Questionnaire 2.1 (SPNQ 2.1)
consisting of Religious, Inner Peace, Existential, and Actively Giving aspects. To analyse data of spiritual needs,
the study used distribution of frequency and percentage. Mean value was used to identify how important those
spiritual needs were to respondents (1-1.9: somewhat needed, 2-2.9: fairly needed, 3: strongly needed). The
results showed that on Religious aspect, “praying with others” and “having someone pray for me” have the
highest percentage (96.05%). On Inner Peace, “living in a calm and peaceful place” and “finding inner peace”
have the highest precentage (89.47%). On Existential aspect, “finding meaning in pain and suffering” has the
highest percentage (94.74%). On Actively Giving, “becoming a loving person” has the highest percentage
(89.47%). Those needs were identified as “fairly needed”, with the following mean values: Religious
(2.28±0.47), Inner Peace (2.19±0.47), Existential (2.11±0,76), and Actively Giving (2.08±0,55). This study
indicated all dimensions of spiritual aspects were needed by respondents and religious aspects were most
needed.

Key words: Cancer, patient, spiritual needs.

 Pendahuluan
World Health Organization (WHO) (2010)
memperkirakan kasus kanker akan terus mengalami
peningkatan dan diprediksi akan mencapai 21,4 juta
kasus pada tahun 2030 dan dua pertiga kasus
tersebut terdapat di negara- negara berkembang
seperti di Indonesia. Di Indonesia berdasarkan hasil
survey Riset Kesehatan Dasar tahun 2013 didapatkan
prevalensi penyakit tumor/kanker mencapai 1,4 per
mil (Kemenkes RI, 2013).
Penyakit kanker berdampak terhadap seluruh
aspek kehidupan penderita, baik fisik, psikologis
maupun spiritual. Secara fisik penderita akan
mengalami nyeri, fatigue, serta penurunan fungsi
fisik dan kelelahan yang dirasakan terus menerus
(Ahn et al., 2009; Grimsbø, Ruland, dan Finset,
2012), kondisi ini akan mengakibatkan timbulnya
masalah psikologis pada pasien. Respon psikologis
yang sering terjadi pada panderita kanker antara lain
sedih, syok, apatis, berduka, cemas, takut terhadap
kekambuhan maupun kematian, harga diri rendah,
persepsi diri rendah, penurunan gambaran diri,
isolasi diri dan depresi (Brown et al., 2005;
Limpscomb, Gotay, dan Snyder, 2005; Sjamsuhidajat
& Wim de Jong, 2004, Van Weert, 2007; Braeken et
al., 2009; Hamid, 2009; Machin, 2009; Grimsbø,
Ruland, dan Finset, 2012) selain itu menurut Roos
(2002), Peterson dan Bredow (2009), Martz dan
Livneh (2007), respon lain yang dapat muncul pada
penderita kanker adalah merasa kehilangan dan
merasakan penderitaan yang berkelanjutan.
Masalah yang dialami oleh pasien kanker meliputi
seluruh aspek yakni aspek fisik, psikologis, sosial dan
spiritual, Meskipun masalah yang dihadapi pasien
kanker kompleks, upaya yang dilakukan oleh pemberi
pelayanan kesehatan masih terfokus pada
penanganan penyakit atau permasalan fisik saja.
Pada pasien kanker, terutama kanker stadium lanjut,
upaya penyembuhan menjadi sangat sulit, sedikit
sekali pasien yang dapat kembali pulih dari
penyakitnya. Di sisi lain, pasien merasakan
pentingnya pemenuhan kebutuhan spiritual.
Pasien dengan kondisi terminal seperti ini, hal
yang dianggap sangat berharga adalah spiritual.
Menurut Murray (2004), spiritual
care pada pasien dengan penyakit terminal dirasakan
oleh pasien sebagai hal yang penting. Sejalan dengan
itu, Mok, Wong, dan Wong (2009) menyatakan bahwa
satu- satunya sumber penyembuhan (healing) bagi
pasien dengan penyakit terminal adalah spiritualitas
mereka. Pasien membutuhkan intervensi spiritual
dengan porsi yang cukup besar, selain pengobatan
ataupun perawatan fisik (Mcgrath, 2004). Menurut
Guillory, Sowell, Moneyham, dan Seals (1997),
pasien dengan penyakit terminal akan lebih mencari
makna dari kehidupan sebagai cara untuk
memperpanjang kelangsungan hidup mereka. Ketika
tidak ada lagi cara untuk sembuh, perhatian pasien
akan terfokus pada pemahaman terhadap proses
kehidupan dan keterikatan dengan kekuatan yang
lebih tinggi.
Pentingnya pemenuhan kebutuhan spiritual juga
diperkuat oleh Puchalski (2009) yang menyatakan
bahwa tidak semua penyakit dapat disembuhkan
namun selalu ada ruang untuk “healing”atau
penyembuhan. Penyembuhan dapat dimaknai
sebagai penerimaan terhadap penyakit dan
ketentraman dalam kehidupan danspiritual menjadi
inti dari penyembuhan”. Dalam penelitian lainnya
Puchalski et al (2009) mengungkapkan bahwa
penyembuhan mengacu pada kemampuan
seseorang mendapatkan kebahagiaan,
kenyamanan, koneksi, makna, dan tujuan
hidup dalam penderitaan maupun rasa sakit yang
dialami. Dalam menunaikan perannya, sebagai care
provider perawat harus melihat pasien secara
holistik. Meski demikian, Dossey, Keegan, dan
Guzzetta (2005) menyatakan bahwa salah satu
tantangan besar perawat saat ini adalah
mengintegrasikan konsep dari teknologi body, mind
and spirit kedalam praktek Keperawatan.
Adapun sebagai tenaga kesehatan,
perawat dalam memulai mengintegrasikan
spiritualitas ke dalam praktek
pelayanan kesehatan dapat melalui tiga cara,
yakni: 1). Melalui berbagai penelitian;
2). Melalui pengkajian spiritualitas pasien dan nyeri
spiritual yang dialami pasien dan 3). Melalui
intervensi terapeutik (Anandarajah dan Hight, 2001).
Pemenuhan kebutuhan spiritual pada pasien tidak
hanya bermanfaat bagi pasien saja tetapi
dapat berdampak terhadap profesionalisme
kerja
perawat (Kociszewski, 2004) dan pelayanan
kesehatan. Hodge, Sun, dan Wolosin (2014)
menyebutkan bahwa terdapat hubungan positif
antara kebutuhan spiritual dengan kepuasan
pelayanan kesehatan.
Upaya pemenuhan kebutuhan spiritual pasien
diawali dengan kajian kebutuhan spiritual.
Berdasarkan kajian tersebut perawat dapat
mengetahui kebutuhan spiritual mana yang perlu dan
belum terpenuhi pada pasien, karena spiritual bagi
setiap orang berbeda, tergantung dari cara pandang
dan latar belakang seseorang. Menurut Hawari (2004)
serta Burkhardt dan Nagai-Jacobson (2005),
spiritualitas bersifat personal atau individual.
Terdapat berbagai hal yang melatarbelakanginya,
yang mana setiap individu memiliki cara pandang
dan pemahaman tersendiri tentang spiritualitas.
Perbedaan konsep spiritual dipengaruhi oleh budaya,
perkembangan, pengalaman hidup dan persepsi
seseorang tentang hidup dan kehidupan.
Berdasarkan hasil observasi dan wawancara yang
dilakukan terhadap perawat yang memberikan
layanan keperawatan kepada pasien-pasien dengan
penyakit terminal di sebuahn RS di Kota Bandung
diketahui bahwa selama ini spiritual care yang
biasa dilakukan masih sangat terbatas. Saat ini,
perawat belum secara optimal memberikan
pemenuhan kebutuhan spiritual pasien. Sebagian
besar perawat masih memiliki persepsi bahwa
pemenuhan kebutuhan spiritual dilakukan dalam
bentuk fasilitasi ibadah keagamaan dan tidak semua
pasien mendapatkannya. Pemahaman yang
berkembang mengenai spiritual care di Indonesia
sangat kental dengan praktek- praktek religius
keagamaan, seperti mentalkinkan pasien dying,
membacakan ayat-ayat Al-Quran ataupun kitab suci
lainnya dan berdoa. Hal ini diperkuat oleh penelitian
lain yang menunjukkan bahwa persepsi perawat
tentang cara/bentuk pemenuhan kebutuhan spiritual
kepada pasien masih terbatas pada membantu
kegiatan ibadah pasien, melibatkan keluarga dan
tokoh agama serta memberikan semangat (Ariyani,
Suryani dan Nuraeni ,2014). Padahal dalam berbagai
penelitian keperawatan konsep spiritual care
ternyata lebih luas dari hanya
praktek keagamaan saja, tetapi berhubungan juga
dengan arti dari keberadaan manusia. Berdasarkan
uraian tersebut menjadi penting untuk meneliti lebih
lanjut tentang kebutuhan spiritual dari pasien
dengan kanker stadium lanjut yang menjalani
perawatan di unit rawat inap salah satu rumah sakit
di Bandung.
Metode Penelitian
Penelitian ini menggunakan rancangan deskriptif
kuantitatif. Peneliti akan menguji data yang
dikumpulkan pada satu kesempatan dengan subjek
yang sama (coss sectional). Peneliti memaparkan
variabel penelitian yang diteliti untuk mendapatkan
pemahaman yang mendalam tentang fenomena.
Populasi pada penelitian ini adalah pasien kanker
yang dirawat di ruang rawat inap salah satu rumah
sakit di Bandung dengan jumlah rata-rata per bulan
120 pasien. Sampel pada penelitian ini adalah pasien
kanker dewasa dengan menggunakan teknik
pengambilan sampel insidental sampling. Ukuran
sampel ditentukan dengan menggunakan rumus
(Nugraha, 2007). Populasi N=120 yang didapatkan
berdasarkan rata-rata pasien kanker yang dirawat 40
orang pasien per bulan di setiap ruang rawat inap,
derajat kesalahan e=10%, maka ukuran sampel
(n) yang diperlukan dalam penelitian ini adalah
minimal 55 subjek. Dalam penelitian ini jumlah calon
responden yang berhasil direkrut sebanyak 100
orang, namun hanya 76 responden saja yang mengisi
kuesioner dengan lengkap dan dapat dilanjutkan ke
dalam tahapan analisis data.
Instrumen yang digunakan dalam penelitian ini
adalah Spiritual Needs Questionaire (SpNQ) yang
dikembangkan oleh Bussing, Balzat, dan Heusser,
(2010). Instrumen ini digunakan untuk mengukur
kebutuhan spiritualitas khususnya pada pasien
dewasa yang mengalami sakit kronis. Terdiri atas 19
item pertanyaan. Dalam instrumen kebutuhan
spiritualitas ini, ada empat bagian yaitu, religious;
inner peace; existential (reflection/rerataing); dan
actively giving/ generativity. Dalam hal skoring,
pertama- tama instrumen ini akan menilai kebutuhan
spiritual responden (ya/tidak), selanjutnya
menilai seberapa kuat/penting kebutuhan spiritual
tersebut bagi mereka dengan menggunakan skala 1–3
(1- agak dibutuhkan;
2- dibutuhkan; 3- sangat dibutuhkan).
Validitas dari instrumen, dijelaskan bahwa Aspek
kebutuhan religi berhubungan sangat kuat dengan
skala SpREUK (r> 0.7) dan juga berhubungan kuat
dengan Search for Support / Access and Reflection
(Positive Interpretation of Disease). Kebutuhan
eksistensi diri dan kebutuhan untuk memberi
berhubungan dengan skala SpREUK, sementara
kebutuhan kedamaian berhubungan lemah. Pada
pasien dengan kondisi nyeri kronik, kebutuhan
eksistensi diri berhubungan dengan strategi escape-
avoidance (Escape from illness). Kebutuhan spiritual
berhubungan lemah dengan kepuasan hidup,
sementara itu kebutuhan untuk memberi
berhubungan dengan kepuasan hidup (r = 0.17; p =
0.12) dan berhubungan terbalik dengan skor gejala
pasien (r = -0.29; p < 0.0001). Kebutuhan kedamaian
berhubungan lemah dengan kepuasan pasien
terhadap efikasi pengobatan (r = 0.24; p < 0.0001).
Analisis regresi linier multivariat menunjukkan
bahwa kecemasan memiliki dampak signifikan pada
kebutuhan
kedamaian, kebutuhan eksistensi diri, dan kebutuhan
untuk memberi pada pasien kanker. Dan nilai
reliabilitas kuesioner SpNQ 2.1 memiliki konsistensi
internal yang diperkirakan antara 0.74 sampai
dengan 0.92.
Hasil Penelitian
Berdasarkan hasil penelitian, semua aspek dari
kebutuhan spiritual dirasakan sebagai kebutuhan
oleh sebagian besar responden, hanya sebagian kecil
dari responden saja yang tidak membutuhkan aspek
spiritual tertentu. Aspek kebutuhan spiritual yang
dipilih oleh hamper sebagian besar responden adalah
aspek kebutuhan religi.
Tabel 1 terlihat kebutuhan religi pada penelitian ini
menjadi dimensi kebutuhan spiritual yang paling
banyak dibutuhkan oleh hampir seluruh responden.
Dari dimensi ini aspek yang paling banyak dibutuhkan
adalah berdoa baik dengan orang lain atau didoakan
oleh orang lain.
Kebutuhan akan kedamaian sebagian besar dipilih
oleh responden sebagai salah

Tabel 1 Distribusi Kebutuhan Dimensi Religi pada Kebutuhan Spiritual Pasien Kanker (n =
76)
Kebutuhan Religi Tidak (%) Ya (%)
Berdoa dengan orang lain 3 3,05 73 96,05
Seseorang berdoa untuk anda 3 3,05 73 96,05
Berdoa untuk diri sendiri 3 3,05 73 96,05
Beralih dan mendekat dalam keagungan akan 5 6,58 71 93,42
kehadiran
yang lebih tinggi (keesaan, Tuhan, malaikat
Berpartisipasi dalam upacara keagamaan 9 11,84 67 88,16
Membaca buku keagamaan 13 17,11 63 82,89

Tabel 2 Distribusi Kebutuhan Dimensi Kedamaian pada Kebutuhan Spiritual Pasien Kanker
(n=76)
Kebutuhan Kedamaian Tidak (%) Ya (%)
Tinggal di tempat yang tenang dan damai 8 10,53 68 89,47
Menemukan kedamaian batin 8 10,53 68 89,47
Berbicara dengan orang lain mengenai 9 11,84 67 88.16
ketakutan
dan kekhawatiran
Menyatu (menikmati) dengan keindahan alam 10 13,16 66 86,84
Lebih disayang orang lain 12 15,79 64 84,21
Tabel 3 Distribusi Kebutuhan Dimensi Eksistensi Diri pada Kebutuhan Spiritual Pasien Kanker
(n=76)
Kebutuhan Kedamaian Tidak (%) Ya (%)
Tinggal di tempat yang tenang dan damai 64 10,53 4624 89,47
Menemukan kedamaian batin 64 10,53 4624 89,47
Berbicara dengan orang lain mengenai ketakutan dan 81 11,84 4489 7772.185
kekhawatiran 6
Menyatu (menikmati) dengan keindahan alam 100 13,16 4356 86,84
Lebih disayang orang lain 144 15,79 4096 84,21

Tabel 4 Distribusi Kebutuhan Dimensi Kebutuhan untuk Memberi pada Kebutuhan Spiritual
Pasien Kanker (n=76)
Kebutuhan untuk Memberi Tidak (%) Ya (%)
Beralih menjadi orang yang penuh cinta 8 10,53 68 89,47
kasih
Memberikan sesuatu untuk diri sendiri 11 14,47 65 85,53
Menjadi pelipur lara orang lain 21 27,63 55 72,37
Lebih disayang orang lain 144 15,79 4096 84,21

Tabel 5 Distribusi Tingkat/Seberapa Jauh Pentingnya Kebutuhan Spiritual Pasien

Kanker (n=76)
Kebutuhan untuk Memberi Tidak

Beralih menjadi orang yang penuh cinta kasih 8

Memberikan sesuatu untuk diri sendiri 11
Menjadi pelipur lara orang lain 21

satu kebutuhan spiritual mereka, dan aspek “tinggal

di tempat yang tenang dan damai serta menemukan
kedamaian batin” menjadi aspek yang paling banyak
dibutuhkan oleh responden (Tabel 2). “Menemukan
makna dalam sakit atau penderitaan” merupakan
aspek yang paling banyak dibutuhkan oleh hampir
seluruh responden, namun demikian aspek
“Menghilangkan Dimensi keterbukaan dalam hidup”
paling sedikit dipilih oleh responden, aspek ini tidak
dibutuhkan oleh sebagian besar responden (Tabel 3).
Tabel 4 menunjukkan dimensi ini sebagian besar
dibutuhkan oleh responden terutama pada aspek
“beralih menjadi orang yang penuh cinta kasih”, dan
aspek “menjadi pelipur lara orang lain” menjadi
aspek yang paling sedikit dipilih dalam dimensi ini,
namun demikian tetap saja sebagian besar
responden merasakan kebutuhan untuk “menghibur
orang lain”. Untuk menilai seberapa kuat / penting
kebutuhan spiritual
digunakan skala 1–3 (1 – 1,9 agak dibutuhkan; 2–2,9
dibutuhkan; 3 sangat dibutuhkan), berdasarkan skala
tersebut seluruh dimensi kebutuhan spiritual berada
pada kategori dibutuhkan, dan berdasarkan tingginya
nilai rerata maka dimensi religi menjadi dimensi
kebutuhan spiritual yang paling dibutuhkan dibanding
dimensi spiritual lainnya (Tabel 5).
Pembahasan
Kebutuhan spiritualitas merupakan kebutuhan yang
penting untuk dipenuhi pada pasien dengan penyakit
kanker selain aspek kebutuhan lainnya, karena
penyakit ini dapat berdampak terhadap seluruh
aspek kehidupan penderitanya baik fisik, psikologis
maupun spiritual. Spiritualitas menurut Puchalski
(2001) dapat digunakan sebagai salah satu sumber
koping selain itu spiritualitas memberikan dampak
yang
positif bagi kesehatan dan dapat dijadikan sebagai
sumber penyembuhan (healing). Hal ini diperkuat didoakan oleh orang lain menjadi aspek kebutuhan
oleh hasil penelitian Bussing et al (2010) bahwa yang paling banyak dipilih oleh responden. Hal ini
sebagian besar pasien kanker memerlukan semakin memperlihatkan bahwa dalam masyarakat
spiritualitas ataupun religiusitas sebagai sumber Indonesia khususnya Jawa Barat kebutuhan religi
koping untuk menghadapi kondisi tersebut, sehingga atau keagamaan memegang peranan penting dalam
pengetahuan yang baik tentang kebutuhan spiritual kehidupan. Hal ini diperkuat oleh Suryaman (2011)
pasien oleh perawat menjadi penting untuk dimiliki. yang menyatakan bahwa masyarakat Jawa Barat atau
Menurut Bussing et al (2010) kebutuhan spiritual Sunda dikenal sebagai masyarakat religius.
meliputi: kebutuhan religi atau keagamaan; Kebudayaan masyarakat Sunda pun banyak
kebutuhan mendapatkan kedamaian; eksistensi diri; dipengaruhi oleh budaya Islam. Hal ini diperkuat oleh
serta kebutuhan untuk memberi. Setiap orang Agoes (2003) bahwa agama Islam merupakan agama
memiliki kebutuhan ini namun demikian berbeda yang telah lama dipeluk oleh masyarakat Sunda,
dalam aspek maupun tingkat kebutuhannya masing- maka sulit untuk memisahkan adat dan agama
masing, sehingga penting untuk dilakukan kajian karena biasanya kedua unsur tersebut sudah menyatu
terlebih dahulu dalam menentukan kebutuhan menjadi adat kebiasaan dan kebudayaan orang
spiritual pasien. Sunda.
Berdasarkan hasil penelitian dapat Masyarakat Sunda dinyatakan oleh Suryaman
diketahui bahwa kebutuhan keagamaan/religi (2011) memiliki pandangan setiap kali
menjadi kebutuhan spiritual yang paling banyak dihadapkan pada kesulitan yakni walaupun jasmani
dibutuhkan oleh responden diikuti oleh kebutuhan sakit namun rohani harus tetap sehat, yakni sehat
eksistensi diri. Kebutuhan mendapatkan kedamaian dalam berbuat dan bertindak, sehat berpikir dan
serta kebutuhan untuk memberi memiliki jumlah berprasangka. Sehat berprasangka berarti
persentase yang hampir sama namun berada menjauhkan pikiran dari sifat suudzon
dibawah kebutuhan eksistensi. Secara umum seluruh (berprasangka buruk) terutama kepada Tuhan
kebutuhan ini dipilih oleh sebagian besar sehingga walaupun dihadapkan dengan kesulitan
responden, sehingga dapat disimpulkan bahwa tetap dapat melihat hikmah dan berbagai sisi positif
seluruh kebutuhan ini penting untuk diperhatikan dari sakit yang dialami, dan meyakini bahwa Tuhan
dan diupayakan pemenuhannya. Dilihat dari yang mengatur seluruh kehidupan manusia. Menurut
tingkatan sampai seberapa penting pemenuhan Nuraeni (2012) spiritualitas bagi pasien dapat berarti
kebutuhan spiritual, kebutuhan penerimaan dan kepasrahan kepada Tuhan namun
religi/keagamaan menjadi disertai dengan usaha dan ikhtiar untuk
kebutuhan yang dibutuhkan dibanding mendapatkan kesembuhan, dalam penelitian ini
kebutuhan spiritual pada dimensi lainnya, hal ini salah satu bentuk ikhtiar yang dilakukan adalah
berdasarkan pada nilai rerata yang diperoleh melaui berobat dan terus berdoa, kebutuhan spiritual
pada masing-masing dimensi. dari dimensi religi yang dianggap sangat - amat
Seberapa penting tingkatan kebutuhan sangat dibutuhkan pada pasien kanker dalam
spiritual pada dimensi lainnya secara penelitian ini adalah berdoa, baik untuk diri sendiri
berurutan dituliskan sebagai berikut: dimensi maupun didoakan oleh orang lain. Terkait dengan
kedamaian; dimensi eksistensi diri dan keyakinan ini, perawat sebagai tenaga kesehatan
yang selama 24 jam mendampingi pasien perlu
dimensi kebutuhan untuk memberi. membantu pasien dalam memenuhi kebutuhan akan
Dimensi kebutuhan keagamaan/religi menjadi keagamaannya, hal ini dapat dipenuhi dengan
kebutuhan yang paling banyak dibutuhkan serta kegiatan sederhana seperti berdoa bersama dengan
menjadi kebutuhan spiritual yang dibutuhkan oleh pasien, menyediakan buku-buku
responden dibandingkan dimensi lainnya, hampir keagamaan, dan memfasilitasi ibadah pasien.
seluruh responden membutuhkan kebutuhan Selanjutnya adalah kebutuhan akan
spiritualitas ini. Dengan aspek (item) kebutuhan kedamaian (inner peace) menurut Chao,
berdoa dengan orang lain serta
Chen dan Yen (2002) kedamaian diri adalah
spiritualitas yang muncul dari rekonsiliasi pada diri
sendiri, sebagai hasil dari negosiasi terhadap konflik
yang dihadapi. Menurut Chao et al (2002) setiap
orang disepanjang hidupnya pasti pernah merasakan
inferioritas, tidak percaya diri, egois, malu bahkan
benci terhadap diri sendiri, dan kedamaian dapat
muncul dari self reconciliation terhadap masalah
yang dialami, sehingga mampu memberikan
penghargaan yang baik bagi diri sendiri. Dalam
penelitian Nuraeni (2012) kedamaian diri dapat
muncul sebagai bentuk penerimaan terhadap
permasalahan (penyakit) yang dianggap sebagai
teguran maupun cobaan, penerimaan ini dapat
membawa kedalam kehidupan yang lebih baik.
Menurut Bussing et al (2010) kebutuhan akan
kedamaian antara lain terdiri dari aspek berikut ini :
berharap berada ditempat yang tenang dan sunyi,
menikmati keindahan alam, menemukan kedamaian
dari dalam, berbicara dengan orang lain tentang
ketakutan dan kekhawatiran, dan ketaatan.
Pemenuhan kebutuhan akan kedamaian ini pada
sebagian responden masih belum terpenuhi.
Berdasarkan uraian yang sudah disebutkan
sebelumnya pemenuhan kebutuhan kedamaian ini
dapat dilakukan oleh perawat melalui beberapa hal,
yakni : fasilitasi tempat yang tenang dan sunyi,
memberikan waktu- waktu tertentu bagi pasien
untuk menyendiri serta mendorong penerimaan
pasien akan penyakitnya, selain itu perawat juga
dapat mendekatkan pasien dengan alam dengan cara
menambahkan ornamen alam di ruang rawat dapat
melaui suara gemericik air, lukisan tentang alam dan
sebagainya.
Kebutuhan spiritualitas pada dimensi kebutuhan
eksistensi diri menjadi kebutuhan spiritual
selanjutnya setelah kebutuhan dalam dimensi
kedamaian diri. Kebutuhan eksistensi diri menurut
Bussing et al (2010) meliputi refleksi kehidupan,
berbicara dengan seseorang tentang arti dan makna
kehidupan, berbicara dengan seseorang tentang
ketakutan, dan kehidupan setelah kematian. Frankl
(dalam Guillory et al, 1997) menyatakan bahwa inti
dari keberadaan seorang manusia (eksistensi) adalah
melalui pencarian makna dan tujuan hidup. Lebih
jauh Buchardt dan
Nagai-Jacobson mendefinisikan spiritualitas sebagai
esensi dari keberadaan manusia, menanamkan
kesadaran tentang siapa kita, apa tujuan hidup dan
sumber batin seorang manusia. Pemenuhan
kebutuhan eksistensi diri dalam penelitian ini masih
rendah jika dibandingkan dengan pemenuhan
kebutuhan religi dan kebutuhan untuk memberi.
Perawat dapat membantu pasien untuk memenuhi
kebutuhan eksistensi diri pasien melalui komunikasi
ataupun memfasilitasi dan mendorong pasien dalam
hal melakukan interospeksi diri, berbicara tentang
makna dan tujuan hidup, makna sakit dan
penderitaan serta kehidupan setelah kematian.
Dimensi kebutuhan spiritual yang terakhir adalah
kebutuhan untuk memberi. Dibandingkan dmensi
kebutuhan spiritual sebelumnya, kebutuhan spiritual
ini dirasakan penting namun dalam tingkat yang lebih
rendah. Menurut Bussing et al (2010) kebutuhan
untuk memberi terdiri dari :secara aktif dan atas
kesadaran sendiri menghibur orang lain, untuk
berbagi pengalaman kepada orang lain, dan untuk
memastikan bahwa hidup ini memiliki nilai dan
makna. Hal ini memperkuat penelitian yang
dilakukan oleh Walton (2002) bahwa spiritualitas
adalah keseimbangan, setelah seseorang
mendapatkan bantuan, pertolongan dari orang lain
pada saat mengalami krisis, akan timbul keinginan
untuk dapat memberi atau berguna bagi orang lain,
agar dia mendapatkan keseimbangan. Pendapat ini
diperkuat juga oleh Nuraeni (2012) bahwa salah satu
makna spiritualitas pada pasien sakit di Indonesia
adalah memberi manfaat bagi sesama.
Simpulan
Perawat memiliki peran sebagai care provider. Dalam
menunaikan perannya perawat harus melihat pasien
sebagai satu kesatuan yang holistik. Upaya yang
harus dilakukan untuk meningkatkan pelayanan
asuhan keperawatan spiritual pada pasien, salah
satunya adalah melalui kajian kebutuhan spiritual.
Kebutuhan spiritual pada pasien kanker pada
penelitian ini meliputi keseluruhan dimensi yang
diukur yaitu : kebutuhan religi/keagamaan;
kebutuhan kedamaian; eksistensi diri; dan
kebutuhan untuk memberi. Kebutuhan religi/
keagamaan menjadi kebutuhan spiritual yang paling
banyak dibutuhkan oleh pasien kanker. Selain itu
kebutuhan eksistensi diri dalam aspek menemukan
makna dalam sakit dan penderitaan pun dipilih
hampir oleh seluruh responden sedangkan aspek
menghilangkan keterbukaan dalam hidup merupakan
kebutuhan spiritual yang paling sedikit dipilih.
Berdasarkan tingkat/pentingnya kebutuhan spiritual
secara umum, seluruh dimensi kebutuhan spiritual
penting untuk dipenuhi, dengan tingkatan kebutuhan
dari nilai tertinggi sampai terendah adalah sebagai
berikut: 1) kebutuhan religi; 2) kebutuhan
kedamaian; 3) kebutuhan eksistensi diri; dan
4) kebutuhan untuk memberi.
Religi merupakan kebutuhan spiritual yang
dianggap paling penting dan paling banyak
dibutuhkan oleh pasien, sehingga pemenuhan
kebutuhan ini perlu diperhatikan oleh perawat.
Perawat dapat mendukung pemenuhan kebutuhan ini
melalui kegiatan sederhana seperti berdoa bersama
dengan pasien, menyediakan buku-buku keagamaan,
dan memfasilitasi ibadah pasien. Kebutuhan spiritual
yang dianggap penting lainnya namun pemenuhannya
masih belum optimal adalah kebutuhan kedamaian
dan eksistensi diri, untuk mendukung pemenuhan
kebutuhan ini perawat dapat melakukan komunikasi
teurapeutik yang dapat mendorong pasien untuk
introspeksi diri, berbicara tentang makna dan tujuan
hidup, makna sakit dan penderitaan serta kehidupan
setelah kematian. Selain itu untuk mendapatkan
perasaan damai perawat perlu memberikan waktu-
waktu tertentu bagi pasien untuk menyendiri jika
memungkinkan menciptakan tempat rawat inap yang
tenang, selain itu perawat juga dapat mendekatkan
pasien dengan alam dengan cara menambahkan
unsur alam dalam ruang perawatan dapat melaui
suara gemericik air, lukisan tentang alam, bunga dan
sebagainya.
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Analisis Jurnal 9

Judul Penelitian
KEBUTUHAN SPIRITUAL PADA PASIEN KANKER
Kata Kunci
Kanker, kebutuhan spiritual, pasien.
Pengarang / Author
Nuraeni Aan, Nurhidayah Ikeu, Hidayati Nuroktavia, Mambang Citra Windani Sari,
Mirwanti Ristina. Fakultas Keperawatan Universitas Padjadjaran.
Tanggal Publikasi
Volume 3 Nomor 2 Agustus 2015
Kesimpulan
Penelitian ini bertujuan mengidentifikasi kebutuhan spiritual pada pasien kanker serta
tingkat kebutuhannya. Penelitian deskriptif kuantitatif ini melibatkan 76 pasien kanker
yang sedang menjalani perawatan di salah satu RS di Bandung yang diambil dengan
accidental sampling.
Sampel pada penelitian ini adalah pasien kanker dewasa dengan menggunakan teknik
pengambilan sampel insidental sampling. Ukuran sampel ditentukan dengan
menggunakan rumus (Nugraha, 2007). Populasi N=120 yang didapatkan berdasarkan
rata-rata pasien kanker yang dirawat 40 orang pasien per bulan di setiap ruang rawat inap,
derajat kesalahan e=10%, maka ukuran sampel (n) yang diperlukan dalam penelitian ini
adalah minimal 55 subjek. Dalam penelitian ini jumlah calon responden yang berhasil
direkrut sebanyak 100 orang, namun hanya 76 responden saja yang mengisi kuesioner
dengan lengkap dan dapat dilanjutkan ke dalam tahapan analisis data.
Hasil penelitian menunjukkan bahwa pada aspek religi, berdoa dengan oranglain dan
seseorang berdoa untuk responden memiliki persentase paling tinggi (96,05%). Pada
aspek kedamaian, tinggal di tempat yang tenang dan damai serta menemukan kedamaian
batin memiliki persentase paling tinggi (89,47%). Pada aspek eksistensi diri, menemukan
makna dalam sakit dan penderitaan memiliki persentase paling tinggi (94,74%). Adapun
pada kebutuhan untuk memberi, beralih menjadi orang yang penuh cinta kasih memiliki
persentase paling tinggi (89,47%). Kebutuhan tersebut masuk ke dalam kategori
dibutuhkan dengan nilai rerata sebagai berikut : kebutuhan religi (2,28±0,47); kedamaian
(2,19±0,47); eksistensi diri (2,11±0,76); dan kebutuhan untuk memberi (2,08±0,55).
Penelitian ini menunjukkan bahwa semua dimensi kebutuhan spiritual sangat dibutuhkan
oleh responden, dan kebutuhan religi merupakan kebutuhan yang paling banyak dipilih
dan dirasakan paling dibutuhkan.
Critical Apraisal
a. Why was this study done?
 Penyakit kanker berdampak terhadap seluruh aspek kehidupan penderita,
baik fisik, psikologis maupun spiritual. Secara fisik penderita akan
mengalami nyeri, fatigue, serta penurunan fungsi fisik dan kelelahan yang
dirasakan terus menerus (Ahn et al., 2009; Grimsbø, Ruland, dan Finset,
2012), kondisi ini akan mengakibatkan timbulnya masalah psikologis pada
pasien. Respon psikologis yang sering terjadi pada panderita kanker antara
lain sedih, syok, apatis, berduka, cemas, takut terhadap kekambuhan
maupun kematian, harga diri rendah, persepsi diri rendah, penurunan
gambaran diri, isolasi diri dan depresi (Brown et al., 2005)
 Penelitian ini bertujuan mengidentifikasi kebutuhan spiritual pada pasien
kanker serta tingkat kebutuhannya.
 Peneliti sudah menuliskan dengan jelas tujuan dilakukan penelitian
 Kata kunci yang digunakan peneliti sudah sesuai

b. What is sample of size ?

Sampel pada penelitian ini adalah pasien kanker dewasa dengan menggunakan
teknik pengambilan sampel insidental sampling.
Dalam penelitian ini jumlah calon responden yang berhasil direkrut sebanyak
100 orang, namun hanya 76 responden saja yang mengisi kuesioner dengan
lengkap dan dapat dilanjutkan ke dalam tahapan analisis data.
Penelitian ini menggunakan rancangan deskriptif kuantitatif. Peneliti akan
menguji data yang dikumpulkan pada satu kesempatan dengan subjek yang sama
(coss sectional). Peneliti memaparkan variabel penelitian yang diteliti untuk
mendapatkan pemahaman yang mendalam tentang fenomena.
c. How were the data analyzed?
Analisa data kebutuhan spiritualitas menggunakan distribusi frekuensi dan
persentase, sedangkan nilai rerata digunakan untuk mengidentifikasi seberapa
kuat kebutuhan spiritual tersebut bagi responden dengan kategori 1 – 1,9 agak
dibutuhkan; 2 – 2,9 dibutuhkan; 3 sangat dibutuhkan.

d. Are the measurements of major variables valid &reliable?

Instrumen yang digunakan untuk penilaian variabel sudah valid/tepat.
Instrumen yang digunakan reliable/mampu menampilkan/memberikan makna
yang sama ketika digunakan oleh semua responden

e. Were there any untoward events during the conduct of the study?
Tidak dijelaskan di dalam jurnal
f. How do the results fit with previous search in the area?

Penelitian ini memiliki beberapa kekuatan metodologis.

 Ukuran sampel ditentukan dengan menggunakan rumus (Nugraha, 2007).

Populasi N=120 yang didapatkan berdasarkan rata-rata pasien kanker yang
dirawat 40 orang pasien per bulan di setiap ruang rawat inap, derajat
kesalahan e=10%, maka ukuran sampel (n) yang diperlukan dalam penelitian
ini adalah minimal 55 subjek. Dalam penelitian ini jumlah calon responden
yang berhasil direkrut sebanyak 100 orang, namun hanya 76 responden saja
yang mengisi kuesioner dengan lengkap dan dapat dilanjutkan ke dalam
tahapan analisis data.
 Penelitian ini menggunakan rancangan deskriptif kuantitatif. Peneliti akan
menguji data yang dikumpulkan pada satu kesempatan dengan subjek yang
sama (coss sectional). Peneliti memaparkan variabel penelitian yang diteliti
untuk mendapatkan pemahaman yang mendalam tentang fenomena.
g. What does this research mean for clinicalpractice?
Dari semua komponen tersebut, terlihat bahwa semua dimensi kebutuhan
spiritual sangat dibutuhkan oleh responden, dan kebutuhan religi
merupakan kebutuhan yang paling banyak dipilih dan dirasakan paling
dibutuhkan. Perawat memiliki peran sebagai care provider. Dalam
menunaikan perannya perawat harus melihat pasien sebagai satu kesatuan
yang holistik. Upaya yang harus dilakukan untuk meningkatkan pelayanan
asuhan keperawatan spiritual pada pasien, salah satunya adalah melalui kajian
kebutuhan spiritual.Religi merupakan kebutuhan spiritual yang dianggap
paling penting dan paling banyak dibutuhkan oleh pasien, sehingga
pemenuhan kebutuhan ini perlu diperhatikan oleh perawat. Perawat dapat
mendukung pemenuhan kebutuhan ini melalui kegiatan sederhana seperti
berdoa bersama dengan pasien, menyediakan buku-buku keagamaan, dan
memfasilitasi ibadah pasien.