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Nurses' Preparedness and Perceived Competence in Managing
Disasters
Baack, Sylvia, PhD, RN;Alfred, Danita, PhD, RN
Journal of Nursing Scholarship; Sep 2013; 45, 3; ProQuest
Central
pg. 281

CLINICAL SCHOLARSHIP
The Lived Experiences of People With Chronic Obstructive
Pulmonary Disease: A Phenomenological Study
Yi-Ya Chang, MSc, RN1,2, Yu-Tzu Dai, PhD, RN3, Nai-Hui
Chien, MSN, RN4,5, & Hui-Ya Chan, MSN, RN6,7
1 Lecturer, Department of Nursing, Chang Gung University of
Science and Technology, Taoyuan City, Taiwan
2Doctoral Candidate, School of Nursing, College of Medicine,
National Taiwan University, Taipei City, Taiwan
3 Professor, School of Nursing, College of Medicine, National
Taiwan University, Taipei City, Taiwan
4 Lecturer, Department of Nursing, Chang Gung University of
Science and Technology, Taoyuan City, Taiwan
5Doctoral Candidate, School of Nursing, National Taipei
University of Nursing and Health Sciences, Taipei City, Taiwan
6 Registered Nurse, Department of Nursing, National Taiwan
University Hospital, Taipei City, Taiwan
7Doctoral Candidate, School of Nursing, College of Medicine,
National Taiwan University, Taipei City, Taiwan
Key words
Chronic disease, long-term care,

phenomenology, qualitative research,
respiratory
Correspondence
Yi-Ya Chang, Department of Nursing, Chang
Gung University of Science and Technology,
No.261, Wenhua 1st Rd., Guishan Dist. 33303,
Taoyuan City, Taiwan.
E-mail: [email protected]
Accepted May 7, 2016
doi: 10.1111/jnu.12230
Abstract
Purpose: This study explored the lived experiences of people
with chronic
obstructive pulmonary disease (COPD) following
hospitalization for acute ex-
acerbation or pneumonia.
Design and Method: A phenomenological approach was adopted
to collect
data through semistructured interviews. Fourteen participants
were recruited
from a medical center in northern Taiwan. Data were collected
from January
2013 to January 2014. Giorgi’s phenomenological methodology
was adopted
to analyze the interview content.
Findings: Three phenomenological themes emerged: trapped in
an invisible

cage, torments in the winter, and striving for wellness.
Conclusions: This study sought to elucidate the lived
experiences of peo-
ple with COPD, who perceived themselves as feeling an
overwhelming sense
of confinement. The interviewees displayed positive attitudes,
indicating that
people with COPD are willing to cope with their disease. Health
practitioners
should focus on educating people with COPD about their needs,
encouraging
them to be more positive, and assisting them in engaging in
self-management.
Clinical Relevance: People with COPD can cope with the
disease and seek
alternative methods to improve their health. These positive
attitudes could be
used to encourage self-management in the future.
Chronic obstructive pulmonary disease (COPD) is a
growing threat to global population health because of
smoking, air pollution, and population aging. COPD
was the fifth leading cause of death in 2002, and it is
estimated to rise to the third largest cause of death in the
world by 2030 (World Health Organization, n.d.). The
burden of COPD is projected to increase in the coming
decades.
Earlier researchers emphasized that people with COPD
have a prevalence of depression, anxiety, and poor
quality of life (Al-Gamal, 2014; Asuka et al., 2013;
Garcı́a-Rio et al., 2011). Pulmonary rehabilitation and
self-management were used to improve quality of life
by medical practitioners (Billington, Coster, Murrells, &
Norman, 2015; Jácome & Marques, 2014). It is unclear

why people with COPD continue to have a poor quality
of life and in an unhealthy mood.
Previous qualitative research on the lived experi-
ences of people with COPD focused on their self-care,
self-management, or final stage (Chen, Chen, Lee,
Cho, & Weng, 2008; Ek, Sahlberg-Blom, Andershed, &
Ternestedt, 2011; Hayle, Coventry, Gomm, & Caress,
2013). More evidence and different views of lived expe-
riences other than self-management and life during the
final stage are needed for understanding life with COPD.
Further, lived experiences of patients may differ under
different health care systems, social cultures, and living
conditions.
466 Journal of Nursing Scholarship, 2016; 48:5, 466–471.
C© 2016 Sigma Theta Tau International
Chang et al. People’s Lived Experiences With COPD
Table 1. Interview Guide
1. Would you like to talk about how you feel about COPD?
2. How has COPD affected your life?
3. How do you feel when you feel breathless or have difficulty
breathing?
4. How do you deal with COPD?
5. What concerns you the most in your daily life?
The purpose of this study was to explore the lived ex-

periences of people with COPD following hospitalization
for acute exacerbation or pneumonia. This article extends
knowledge about what it is like to live with COPD after
being hospitalized for acute exacerbation or pneumonia
by highlighting the lived experiences of these persons.
Methods
A qualitative approach was designed for data collection
through semistructured interviews. A phenomenological
methodology was adapted for analyzing the interviews to
extract the meaning of the lived experiences of people
with COPD following hospitalization for acute exacerba-
tion or pneumonia.
A purposive sample of 17 participants was recruited
from the thoracic and geriatric wards of a medical center
in northern Taiwan by one of the authors. Three of the
17 participants declined participation, and 14 participants
were included in this study. Eligibility criteria were: (a)
clinical diagnosis of COPD, (b) had hospitalization due
to acute exacerbation or pneumonia within the past
year, (c) were over 18 years of age, (d) were Mandarin-
or Taiwanese-speaking, (e) were willing to be inter-
viewed and digitally recorded, and (f) were provided
informed consent. Exclusion criteria included: (a) lung
cancer or pulmonary tuberculosis, (b) heart disease, or
(c) cognitive impairment. As no new themes emerged
at the 11th interviewee, the results were considered
saturated and were stopped at the 14th interviewee in
this study.
Data were collected from January 2013 to January
2014. Six of 14 interviews were conducted in clinical
settings, and eight took place at the patients’ homes.
Semistructured, face-to-face, digitally recorded inter-

views were conducted and ranged in length from 42
to 120 min. The interview guide was developed and
modified from previous studies (Chen et al., 2008; Tsou,
Lu, Lin, & Maa, 2009), as outlined in Table 1. This
study was approved by the Research Ethics Committee
of the National Taiwan University Hospital (Reference
No. 201211017RIC) and related departments before
commencement. Subjects who met the recruitment
requirements were invited to participate in this study
and were informed about the aims and procedures of it
in both oral and written form. Before the interviews, all
participants were told that they were free to withdraw
from the interview at any time and for any reason.
The data analysis and interview processes of this study
were carried out simultaneously. After an interview
recording was transcribed, the first author (interviewer)
checked for accuracy by listening to the recordings while
reading the transcripts. All data were analyzed using
Giorgi’s (1997) method for extracting the meaning of
their lived experiences. This method is based on the
philosophy of Husserl. The researcher must “bracket”
to analyze a person’s phenomenal status (Giorgi, 1997).
Procedures used included reading all of the transcripts
that described the experiences and listed the feelings
described, rereading the description, confirming the
lived experiences transcribed in the transcripts, clarifying
and carefully connecting related relationships, carefully
considering what was mentioned by all the interviewees,
translating what was expressed by all interviewees into
scientific terminology and concepts, and combining all
observations into a meaningful description of their lived
experiences. After repeated readings of the transcripts,
the researchers grouped similar meaningful experiences
from the transcripts into key words. Key words with

similar meanings or concepts were then grouped into
a subtheme. Lastly, the main meaning behind each of
these subthemes was then formed into the theme.
This study adhered to credibility, dependability, trans-
ferability, and confirmability (Lincoln & Guba, 1985) for
maintaining rigor. Each interview was conducted by the
first author who is not a staff member at this hospital and
shared no health care provider relationships with the par-
ticipants. The interviewer is a doctoral candidate who has
more than 15 years’ experience as a nursing lecturer and
who received qualitative research training in her master’s
and PhD courses. In order to achieve credibility, the in-
terviewer tried to avoid using her experiences and ideas
to guide the participants to talk about their minds and
feelings. All the transcripts, data coding, and theme for-
mulation were reviewed by another author (first author’s
advisor). A precise transcription of all interview record-
ings was read several times and confirmed by the first
author to achieve dependability. Transferability was met
through a rich description of the context of participants
from different levels of severity in COPD. Conformabil-
ity was enhanced with a rigorous audit trail of data and
procedures.
Findings
Fourteen participants (12 men and 2 women) were re-
cruited from a medical center in northern Taiwan. The
average age of the participants was 77.1 years (range
63–86), and the mean duration of COPD was 5.8 years
Journal of Nursing Scholarship, 2016; 48:5, 466–471. 467

People’s Lived Experiences With COPD Chang et al.
(range 1–11). According to the Global Initiative for
Chronic Obstructive Lung Disease (2015) severity clas-
sification of COPD, seven participants were in the mild
stage, two participants were in the moderate stage, and
five participants were in the severe stage. Eleven partic-
ipants were former smokers, two were nonsmokers, and
one was a current smoker. Their lived experiences follow-
ing hospitalization for acute exacerbation and pneumonia
were analyzed to develop subthemes and themes.
Theme 1: Trapped in an Invisible Cage
All participants perceived being trapped in an invisible
cage as having a great impact on their daily life after being
hospitalized for acute exacerbation or pneumonia. Partic-
ipants experienced a derailed life because of the symptom
of breathlessness. Breathlessness is difficult to avoid and
manage for participants, discouraging them from going
outside, so they would choose to stay at home for a sense
of security. These feelings are linked to debilitation and a
sense of confinement.
Derailed life. Their lifestyles changed dramatically
and they endured significant differences, especially with
respect to exercise capability, sleep patterns, and eating
habits. From their descriptions it was obvious their qual-
ity of life was affected by COPD: “I used to go hiking
before, but I could not go hiking anymore after the exac-
erbations again and again. All I can do is to walk around
my house” (Participant 09). “It is hard to breathe when I
lie down in the bed. I like to sit in the chair when I feel
breathless at night” (Participant 13). “My appetite was
affected by breathlessness. I lost a lot of weight within

2 years because I didn’t eat much” (Participant 13).
Debilitated. Breathlessness is difficult to avoid for
people with COPD, which frustrates participants as it be-
comes difficult to manage. From the participants’ descrip-
tions, it appeared they lacked energy to move around.
This is linked to feelings of debilitation. One participant
expressed his situation: “I am just like a withered flower.
I have no energy to go outside so I choose not to go out-
side” (Participant 07).
Sense of confinement. Participants became breath-
less and fatigued easily due to their COPD, which resulted
in participants narrowing their range of activities. Partici-
pants described their concerns: “I didn’t like to go outside
when I lived in the old apartment without an elevator,
because it was difficult to return if I went outside. I was
locked up in the house all day” (Participant 03). “I used
an oxygen machine at home for nearly 4 years. When I
went outside, I had to carry a small oxygen cylinder so I
couldn’t go far away from my house” (Participant 02).
Theme 2: Torments in the Winter
Participants suffered torments from unpredictable and
uncontrollable pneumonia or acute exacerbations in the
winter. Winter acts like a time bomb that could explode
and cause destruction to their daily life. They expressed
their fears, worries, and concerns. Their airways are sen-
sitive to the low temperature, and acute exacerbation is
more likely to occur in the winter. They experienced a
great fear of death when they struggled for oxygen. Fur-
ther, they worried about becoming a burden to their fam-
ilies when they were hospitalized.

Sensitivity to the cold. The low temperature in
the winter led to coughing for many people with COPD,
which was often quickly followed by feelings of breath-
lessness. One man described his experiences in the win-
ter: “I have been hospitalized for acute exacerbation in
the winter almost every year due to the weather change.
When the weather changes in the winter, the breathless-
ness comes with coughing . . . they never stop” (Partici-
pant 04).
Fear of death. The fear of struggling with oxygen
was not only related to death, but also the complica-
tions or outcome of hypoxia. One participant described
his fears: “I couldn’t breathe . . . It was just like my neck
was squeezed . . . I was afraid that my heart might stop
beating . . . I needed oxygen right away” (Participant 03).
Family burden. When the time bomb of pneumonia
or acute exacerbation exploded, it caused not only suffer-
ing for the people with COPD, but also for their families.
One man described his concerns:
I am in a state of bliss if the next generations show
their filial piety. My son came with me when I needed
to go to the emergency room because of an acute
exacerbation. The daily routine of my son’s family
was disrupted . . . I don’t want to be a burden to my
son and daughter in terms of medical costs or care.
(Participant 03)
Theme 3: Striving for Wellness
Participants suffered from discomfort because of the
symptoms from COPD. Participants strived for their
wellness by preventing the flu, smoking cessation, and
using folk medicine in their daily life to improve their

well-being.
Preventing the flu. Participants were afraid of con-
tracting the flu because of the complications that could
immediately arise. Participants have their own methods
for preventing the flu in their daily life. One participant
shared his experience: “I am afraid of contracting the flu.
In order to avoid contracting the flu, I receive a flu vac-
cine every year and I prefer to stay at home most of the
time when the cold weather comes” (Participant 01).
However, one participant described the uncomfortable
experience of wearing a mask: “It is suggested to wear
a mask. However, I am not used to wear it because it is
difficult to breathe when I wear a mask” (Participant 03).
Smoking cessation. It is hard for people to quit
smoking. A patient’s motivation determines if he or she
is successful in ceasing smoking. It is important to know
why people with COPD stop smoking. One man described
his reason for stopping smoking: “My physician suggested
that I stop smoking to live a longer life. I want to live
longer so I decided to quit smoking. I quit smoking with-
out any help from smoking cessation outpatient services”
(Participant 07).
Using folk medicine. In Asian culture, there is a be-
lief that “medicine and food are from the same source.”
This belief encourages traditional medicine to be com-

bined with daily food intake. Participants in this study
also followed this ideology in their lives. They paid par-
ticular attention to the properties of their food to reduce
COPD symptoms. Experiences shared by participants in-
clude the following: “I found that I have more sputum
within 2 days after eating more tomatoes. Therefore, I am
eating fewer tomatoes now” (Participant 09). According
to Chinese medicine, swallows’ nest soup has beneficial
properties for healing the lungs. A subject described her
hope: “I eat swallows’ nest soup with chicken stock every
day. I think it will be helpful to combat my breathless-
ness” (Participant 11).
Discussion
This study presents participants’ subjective feelings
about their lived experiences as people with COPD
following hospitalization for pneumonia or acute exacer-
bation. Our participants felt that they were trapped in an
invisible cage and their lives were no longer the same af-
ter suffering from COPD. Previous research revealed that
persons with COPD who were severely ill at home with
oxygen therapy built their lives around limited space
during their final stage of life (Ek et al. 2011). We found
that participants had a tendency to narrow their range of
activities. However, in our study, participants were not
seriously ill during their final stage of life, indicating that
people with COPD following hospitalization for acute
exacerbation or pneumonia would be limited mainly to
their home, regardless of their stage of disease. Health
practitioners can focus on working towards educating
and serving people with COPD on how and what to use
to deal with breathlessness for increasing their sense of
security to go outside and be able to extend their range
of activities. Portable oxygen systems are more regularly

used in some Western countries. In the present study,
the participants who required oxygen used nonportable
oxygen, which is one reason why people experienced
restricted activity areas.
Influenza has been predicted as a risk factor for the
exacerbation of COPD (Montserrat-Capdevila, Godoy,
Marsal, Barbé, & Galván, 2015). The highest number of
admissions for patients with COPD occur during win-
ter, as exacerbation and temperature are related to the
number of COPD hospitalizations (Almagro, Hernandez,
Martinez-Cambor, Tresserras, & Escarrabill, 2015; Tseng
et al., 2013). Our study supports these findings, as the
participants described their fears of contracting the flu,
which could progress to acute exacerbation or pneumo-
nia, and in turn could lead to hospital admission. There-
fore, our interviewees were particularly wary of the need
to keep warm on a daily basis to reduce the chance of
acute exacerbation. This is also a reminder to all health
practitioners to advise people with COPD to stay warm,
as well as to supply information on how to avoid con-
tracting the flu. In addition, this study revealed that peo-
ple with COPD who experienced breathlessness found it
more difficult to breathe after wearing a mask, which was
uncomfortable. Alternative methods are needed for pre-
venting respiratory tract infections and protecting against
respiratory pollutants.
A previous study found that the Chinese cultural ideol-
ogy of filial piety and the modernization of society placed
the family caregivers of people with COPD in a caring
dilemma situation in Hong Kong (Yu, Lee, & Wu, 2007).
Taiwan is similarly a place of Chinese culture. We found
that when children helped take care of their parents with
COPD, parents felt that there was sufficient respect from
their children. However, parents with COPD were wor-

ried about their children bearing too much of the burden
if they were to be hospitalized. These results show that
people with COPD were also in a dilemma—while they
appreciated being respected by having their children visit
and care for them in the hospital, they also worried about
increasing the burden on their children. Therefore, health
practitioners need to evaluate the mental support needs
of people with COPD.
Clancy, Hallet, and Caress (2009) found that COPD
patients shared very negative experiences. Our study
Journal of Nursing Scholarship, 2016; 48:5, 466–471. 469
People’s Lived Experiences With COPD Chang et al.
supports this finding since most participants had very
negative feelings towards having COPD. However, some
participants tried hard to be healthier and show a positive
attitude, suggesting people with COPD can cope with
the disease and seek alternative methods to improve
their health. These positive attitudes could be used to
encourage self-management in the future. This research
showed that participants believed eating functional foods
was very important to them, but they also suffered from
a poor appetite, malnutrition, and weight loss. Therefore,
health practitioners should try to introduce evidence-
based nutritional information to people with COPD and
find ways to improve their appetites. This study also
revealed that participants tried to avoid all foods that
had “cold” and “cool” attributes. According to traditional
Chinese medicine, foods have four different attributes
not defined by their temperature: cold, cool, warm, and

hot. From a modern medicine viewpoint, foods with
cold and cool attributes can reduce body metabolism,
while foods with warm and hot attributes can increase
body metabolism (Chen, 2000). Many interviewees
believed that foods with “cold” and “cool” attributes,
such as melons, radishes, and tomatoes, would increase
mucus production. This resulted in reduced intake of
these vegetables by the interviewees. We suggest that a
randomized controlled trial be performed to investigate
if avoiding these vegetables can control COPD symptoms
to provide a more scientific basis for this belief.
Chen and Wang (2011) found that the quality of sleep
for COPD patients was not ideal. Our study supports this
finding, since our participants mentioned that they ex-
perienced breathlessness, increased mucus expelling, and
coughing, leading to poor sleep quality or an inability to
sleep. Except for the recommendations of noninvasive
ventilators and medicines for sleeping, the literature or
educational brochures lack information on ideal sleeping
positions, which healthcare experts need to address and
further research is needed to explore.
Furthermore, the majority of participants were ex-
smokers (11 of 14, with 1 current smoker and 2 non-
smokers). This indicates that people with COPD in this
study were more successful at quitting smoking than
a previous qualitative study showing that two out of
three COPD interviewees were unable to quit smoking
(Schofield, Kerr, & Tolson, 2007). Participants in this
study indicated that they did not receive any treatment
to help them quit smoking. Coughing and breathlessness
contributed to these people successfully quitting smok-
ing, as did consistent encouragement from health practi-
tioners. The reason and process behind the high success
rate in Taiwanese people with COPD in quitting smok-

ing without any treatment should be explored further.
This study also showed that it was very helpful for health
practitioners to correctly remind people of the need to
quit smoking.
Study Limitations
The results of this study only presented the experiences
of people with COPD who were hospitalized at a medi-
cal center in northern Taiwan. People in other parts of
the world may experience living with COPD differently.
The participants in this study were only interviewed on
one occasion, and the data were not sought from multi-
ple sources. The findings may be unable to describe the
phenomenon to a full extent, and it is difficult to inter-
pret participants’ experiences about the changing process
of the disease without further follow-up.
Conclusions
This study described the lived experiences of people
with COPD following hospitalization for acute exacerba-
tion or pneumonia. Participants described their experi-
ences on how to live with COPD. These participants went
outside less because of their fear of breathlessness. They
felt insensibly trapped in an invisible cage. Health prac-
titioners can focus on working towards educating and
serving people with COPD on how to deal with breath-
lessness and offering information to assist them to choose
a more suitable oxygen delivery device for improving
their activities. In addition, people with COPD found that
wearing a mask actually increased their breathlessness, so
alternative methods are needed for preventing respira-
tory tract infection and protecting against respiratory pol-
lution. The positive attitudes observed in some people

indicated that they were still willing to cope with their
disease. Health practitioners should encourage people
with COPD to be positive and responsible by educating
them to self-manage.
Acknowledgment
The authors express special thanks to all participants
who shared their valuable experiences in this study.
Clinical Resources
� COPD Foundation: http://www.copdfoundation.
org/
� Self-management tools: https://www.blf.org.uk/
Page/Self-management-tools
http://www.copdfoundation.org/
http://www.copdfoundation.org/
https://www.blf.org.uk/Page/Self-management-tools
https://www.blf.org.uk/Page/Self-management-tools
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March-April 2018 • Vol. 27/No. 2110
Zila Ben Zaken, MA, RN, is Surgery Clinic Head Nurse,
Hadassah Mt. Scopus University

Hospital, Jerusalem, Israel.
Elena Maoz, MSN, RN, is Faculty Member, Assaf Harofeh
Academic School of Nursing, Tzrifin,
Israel.
Ela Raizman, MPH, RN, is Academic Consulter Nursing
Division, Hadassah Mt. Scopus
University Hospital, Jerusalem, Israel.
Needs of Relatives of
Surgical Patients: Perceptions of
Relatives and Medical Staff
F
amily has a central role in
maintaining a person’s health
and providing informal health
care. It is critical in helping members
to manage illness, and in assisting in
the recovery and rehabilitation
process (Woods & Denton, 2014).
The presence of patients’ family
members at the bedside constitutes
an important source of psychologi-
cal stability for the patient, as well as
a source of support for better recov-
ery (Gillick, 2013; Jezierska, Borkow -
ski, & Gaszyński, 2014). Nurses need
to understand families’ experiences
and identify their needs associated
with hospitalization of family mem-
bers. This knowledge is essential to
optimize families’ well-being and
coping as they attempt to provide
appropriate, effective support to

their critically ill members. The prac-
tice of holistic care implies nurses
consider needs of patients and their
family members (Al Ghabeesh, Abu-
Snieneh, Abu-Shahror, Abu-Sneineh,
& Alhawamdeh, 2014; Al-Mutair,
Plummer, O’Brien, & Clerehan,
2013).
Israel is a multicultural, modern,
industrialized state with a strong
ethos of mutual support, particular-
ly within the family. The extended
family is a key social institution,
and family members are expected
to care for their kin over the life
span. This is particularly true in
families in the Israeli Arab sector, as
well as in families of North African
and Asian origin (Bergman, Bodner,
& Cohen-Fridel, 2013). Family
members stay hours near their
loved ones and have reported mul-
tiple emotions, such as anxiety,
depression, and fear (Jezierska et al.,
2014; Ellis, Gergen, Wohlgemuth,
Nolan, & Aslakson, 2016).
The concept of family involve-
ment in patient care is an area that
has evolved over time, with the
focus of nursing care shifting from
individual patient care to a family-
centered approach (Feinberg, 2014;
Hartog & Jensen, 2013) and people-

centered health care (Davidson et
al., 2017).
Significance of Research
Israel is influenced by Western
culture existing together with a
Middle-Eastern heritage, including
values and practices ranging from
highly orthodox religious perspec-
tives to secular ways of life with var-
ious family lifestyles within differ-
ent ethnic and religious groups
(Halperin, 2013). Most existing
research on the topic of interest was
conducted in Western or Arab
countries among family members
of patients in intensive care units.
Little is known about family mem-
bers of patients hospitalized in
wards.
Purpose
Because of cultural variety of
hospitalized patients, their family
members, and the medical staff, the
purpose of the study was to investi-
gate differences between the per-
ceptions of relatives and medical
staff concerning the needs of rela-
tives visiting patients hospitalized
in the surgical intensive care unit
(SICU) and surgical wards in an
Israeli hospital.

Review of the Literature
Manuscripts published 2012-
2017 were screened in a PubMed
search using the following terms
Research for PracticeResearch for Practice
Zila Ben Zaken
Elena Maoz
Ela Raizman
This study investigated perceptions of relatives of patients
hospital-
ized in surgery ward and surgical intensive care unit and
medical
staff concerning relatives’ needs. Overall rankings of the needs
were
similar. Assurance and anxiety reduction emerged as the most
important need category.
March-April 2018 • Vol. 27/No. 2 111
(with synonyms and closely related
words): needs combined with family,
nurse, and CCFNI.
Numerous studies examined per-
ceptions of relatives and medical
staff (nurses and physicians) of
needs of families of critically ill
patients using the Critical Care
Family Needs Inventory (CCFNI)

(Leske, 1991; Molter, 1979). For
example, Fortunatti and Felipe
(2014) found differences in the
order of need scales importance in
families of critically ill patients. The
family’s hope of desired results and
sincere communication with the
healthcare staff were the most high-
ly ranked needs, while the least
important were related to comfort
and support. Sociodemographic
and cultural characteristics impact-
ed the ranking of individual needs.
Most of the studies in general inten-
sive care units (ICUs) were conduct-
ed in Asia and North America.
Recent original research on the
subject was conducted in develop-
ing countries and different hospital
settings. Obeisat and Hweidi (2014)
conducted descriptive research to
identify perceived needs of Jordan -
ian parents who were visiting their
infants in the Neonatal Intensive
Care Unit (NICU) using the Family
Needs Inventory adapted to NICU
setting (N=170). Find ings showed
the primary concern of parents was
to be assured and informed about
the progress of their infant while
mothers’ perceived needs for sup-
port, information, and proximity
were significantly more important

than fath ers’. Hweidi and Al-
Shannag (2014) conducted a
descriptive study to identify family
needs of critically ill adult patients
as perceived by nurses working in
three critical care units in Jordan
(N=65), using the Arabic version of
the CCFNI. Nurses ranked the fami-
ly need for assurance and informa-
tion the highest but indicated the
need for proximity as a low priority,
a finding different from studies con-
ducted in Western cultures.
A study conducted in Iran by
Iranmanesh, Sheikhrabori, Sabze -
vari, Frozy, and Razban (2014) com-
pared the perception of patients’
relatives (n=105) and ICU nurses
(n=105). Researchers found the
needs for assurance were ranked as
the highest and needs for comfort
as the lowest priority by nurses as
well as by the family. The needs for
proximity were perceived a low-
order priority and needs for support
a higher priority by ICU nurses than
families. Shorofi, Jannati, Moghad -
dam, and Yazdani-Charati (2016)
also compared nurses’ (n=80) and
relatives’ (n=80) perception of needs
in general, trauma, burn, and car-
diac surgical ICUs. Relatives and
nurses differed on priority of needs
for proximity and support, but
needs for assurance were ranked

similarly as the highest.
Relatives’ perception concerning
the importance of family needs may
vary due to influencing factors,
such as gender identity, relationship
to the patient, and level of educa-
tion (Al Ghabeesh et al., 2014;
Al Mutair et al., 2013; Iranmanesh
et al., 2014). Personal characteristics
of healthcare providers were not
correlated to ranking needs of rela-
tives (Hweidi & Al-Shannag, 2014;
Iranmanesh et al., 2014).
Little research has been conduct-
ed on needs of families of patients
in Israel. Khalaila (2013) studied
family satisfaction in meeting needs
of relatives of patients in medical
intensive care from perspectives of
families and staff. No study in Israel
has focused on recognizing family
Purpose
Hospitalization of a family member often leaves families
feeling vulnera-
ble and helpless, with no clear knowledge of what to expect
from health-
care professionals or regarding patient outcomes. The challenge
for nurses
is to provide care for ill patients while attending to the needs of
stressed
family members.

Purpose
Investigate differences between perceptions of relatives and
medical staff
concerning the needs of relatives of postoperative patients, and
explore
the influence of relatives’ characteristics on these needs.
Method
Data were gathered at two separate surgery wards and a surgery
intensive
care unit of a community hospital. Perceived needs of 113
relatives and
45 physicians and nurses were measured using the 45-item
Critical Care
Family Needs Inventory (Molter, 1979).
Findings
Overall rankings of the needs by the two groups were similar.
Assurance
and anxiety reduction emerged as the most important factor.
Significant
differences were found between groups in three areas:
information and
support categories, and 15 needs items.
Limitations and Implications
Generalization of findings is limited due to use of a
convenience sample
of non-Western relatives recruited from a single hospital in a
unique geo-
graphical area. Knowledge about family needs could help nurses
plan and

implement appropriate early interventions in a more holistic
approach to
patient care.
Conclusion
Providing information to families of hospitalized patients and
assuring
them about the quality of care patients receive should be
essential com-
ponents of a nursing delivery system in postoperative settings.
Needs of Relatives of Surgical Patients: Perceptions of
needs related to cultural and reli-
gious values held by family mem-
bers and healthcare providers.
Ethics
The study was approved by the
Institutional Review Board of the
Hadassah University Medical Cen -
ter, Jerusalem, Israel.
Sample Selection
Hadassah Mt. Scopus University
Hospital, a 300-bed community
hospital in Jerusalem, provides
medical care to a mix of Jewish and

Arab populations. The study was
conducted at this hospital on two
surgical wards and the SICU located
on the same floor as part of ward A.
Visitation policy and the level of
family involvement in the surgery
wards and unit were liberal, with
unlimited visitors and open visita-
tion 24 hours a day; healthcare pro-
fessionals had the option to ask the
family to leave the room as needed.
A convenience sample of family
members met the following criteria
for participation: age 18 or older,
marital or blood relative (spouse,
adult child, parent, sister, brother),
able to read and write Arabic or
Hebrew, and visited the ill patient
48 hours after admission to the ICU
or ward. All doctors and nurses were
invited to participate. The researcher
contacted family members at pat -
ients’ bedsides when they visited
their loved ones. Only one family
member participated per patient.
When more than one family mem-
ber met inclusion criteria, family
members identified one among
them who would participate. The
purpose of the study was explained
and informed consent obtained.
Design and Method
The CCFNI (Molter, 1979) was

used for this descriptive study. The
CCFNI is a self-report questionnaire
used in over 50 studies; 45 needs
statements appear on a 4-point
Likert scale (1=not important, 4=very
important). The needs statements
are divided into five dimensions:
assurance, information, proximity,
comfort, and support. Internal con-
sistency of the five dimensions was
demonstrated by Cronbach’s alphas
of between 0.61 and 0.88, while the
Cronbach’s alpha for the total
CCFNI was 0.92 (Leske, 1991).
In this study, relatives received
the original version of the instru-
ment. For medical and nursing
staff, items were reworded to assess
respondents’ view on relatives’
needs rather than respondents’ self-
perceived needs. Items 24 (to have a
pastor visit) and 37 (to be told
about chaplain services) were
changed to “have a religious man
visit” and “to be told about religious
services” with permission of the
tool’s author.
The researcher collected all the
instrument packets on the same day
as completion by family members
so no questionnaires were taken to
participants’ homes. Physicians and
nurses were asked to complete the

questionnaire during their staff
meeting. Completed questionnaires
were returned in a sealed envelope.
Mean scores on the 45 CCFNI
items were ranked in order of impor-
tance for each group. Pairwise
Spearman’s rank correlations were
used to investigate the rankings’
similarity. Mean subscale scores
were derived by summing the scores
of the items as in the original tool.
Between-sample differences were
explored through multivariate anal -
yses of variance. Relationship to rel-
atives’ characteristics were investi-
gated by using Pearson correlations
to the continuous variable of age
and Kruskal Wallis or Wilcoxon-
Mann Whitney nonparametric test
to the categorical variables of other
relatives’ characteristics. The confi-
dence level was set at p=0.05.
Findings
Characteristics of patients’ rela-
tives and hospital staff are present-
ed in Table 1.
Item Scores
Overall the rankings by the two
groups were very similar (r=0.925,
p<0.0001). The multivariate analy-
sis of variance did not reveal an

overall group effect (F1, 125=0.304,
p=0.583). Signifi cant group effects
were found only for three CCFNI
(Molter, 1979) items (6.7%); when
“to talk about the possibility of
patient’s death” was underestimat-
ed while “to have comfortable fur-
niture in the waiting room” and “to
visit at any time” were overestimat-
ed by hospital staff. Family mem-
bers and hospital staff perceived 30
of 45 need items on the CCFNI to
be very important; each of these
items had a mean of 3.0 or higher.
None of the items was perceived to
be not at all important with means
less than 2.0.
The most important need per-
ceived by relatives was “to be
assured the best possible care is
being given.” The next four items,
in order of importance, were “to
have questions answered honestly,”
“to know the expected outcome,”
“to feel that hospital personnel care
about patient,” and “to know spe-
cific facts concerning patient’s
progress.” Only “to be assured the
best possible care is being given”
and “to know the expected out-
come” were included in the top five
ranking of staff. Staff rated “to
know specific facts concerning
patient’s progress” as relatively less

important (rank 10) and “to know
the expected outcome” as more
important (rank 1).
The five least important needs
for relatives were “to be told about
chaplain services,” “to have a reli-
gious man visit,” “to be alone at any
time,” “to have a telephone near
the waiting room,” and “to have
someone be concerned with your
health.” All items were also the least
important needs perceived by staff.
Relatives and staff agreed on the
rank order of four needs (9%).
Subscale Scores
For relatives and staff alike, the
following order of importance of the
mean subscale scores emerged:
Assurance and Anxiety Reduction,
Information, Proximity and Accessi -
bility, Comfort, Support (see Table
2). No significant differences
emerged be tween subscale ratings
of relatives and ratings of hospital
staff.
Research for Practice
TABLE 1.

Sample Characteristics
Patients’ Relatives
N (%)/Mean (SD)
Hospital Staff
N (%)/Mean (SD)
Gender Identity
Male 47 (41.6) 11 (24.4)
Female 66 (58) 34 (75.6)
Religion
Jewish 75 (66.3) 38 (84)
Muslim 38 (33.7) 7 (16)
Religiosity
Secular 48 (42.5) 19 (42.2)
Mild religious 24 (21.2) 13 (28.9)
Very religious 41 (36.3) 13 (28.9)
Age 45.4 (14.1) 41.1 (10.1)
Relationship to Patient
Spouse 43 (38)
Adult children 58 (51.4)
Other 12 (10.6)
Previous Experience with this Unit or Ward
Yes 77 (68.1)
No 36 (31.9)
Patient’s Location
SICU 39 (34.5)
Ward 74 (65.5)

Profession
Nurse 35 (78)
Physician 10 (22)
Years of Professional Experience
≤5 10 (22.2)
6-10 6 (13.3)
11-15 6 (13.3)
16-20 4 (8.9)
≥21 19 (42.2)
SICU = surgical intensive care unit
Subscale
Relatives Staff
Mean (SD) Rank M/Items Mean (SD) Rank M/Items
Assurance and anxiety reduction (7 items) 25.56 (2.43) 1 3.65
24.86 (3.26) 1 3.55
Information (9 items) 29.08 (3.83) 2 3.23 29.49 (3.29) 2 3.28
Proximity and accessibility (9 items) 28.36 (4.46) 3 3.15 28.87
(4.41) 3 3.21
Comfort (6 items) 17.99 (3.50) 4 3.0 18.64 (2.70) 4 3.11
Support (14 items) 40.63 (8.58) 5 2.9 39.27 (7.95) 5 2.8
TABLE 2.
Mean Subscale Scores
Relationship to Relatives’

Characteristics
Age, religion, religiosity, relation-
ship to patient, and previous rela-
tives’ experience were not related
significantly to any need subscales.
A significant effect from the rela-
tive’s gender identity was found
only on need for information (female
mean score 28.19 [4.33], male mean
score 29.74 [3.36], F=4.16, p=0.044))
and from patient’s place of hospital-
ization only on need for support
(ward hospitalized mean score
42.16 [8.44], SICU patients’ relatives
mean score 37.79 [8.22], relatives
F=5.87, p=0 .017). Fifteen individual
need items showed a significant dif-
ference between various relatives’
characteristics groups (see Table 3).
Discussion
This study is the first to describe
the needs of Israeli families of hos-
pitalized patients. The findings
showed family members could
identify needs related to the hospi-
tal environment and were able to
distinguish relative importance
among them. An overall similarity
was identified between the needs
ratings of relatives and hospital
staff. Just two of the five most high-
ly ranked needs appeared in both
rankings: “to be assured that the

best possible care is being given to
the patient” and “to know the
expected outcome.” These needs are
similar to the needs reported by
other researchers as most important
family needs according to relatives
(Al Ghabeesh et al., 2014; Iranma -
nesh et al., 2014) and medical staff
(Hweidi & Al-Shannag, 2014;
Iranmanesh et al., 2014). Other
researchers found more similarity
between rankings when at least
three needs were most highly
ranked by both relatives and med-
ical staff (Al Ghabeesh et al., 2014;
Al-Mutair, Plummer, Clerehan, &
O’Brien, 2014).
The items “to be alone at any
time,” “to have a telephone near
the waiting room,” and “to have
someone be concerned with your
health” composed the least impor-
tant needs for both groups, which is
consistent with other studies (Al
Ghabeesh et al., 2014; Iranmanesh
et al., 2014). Family members place
a low priority on self-care tasks as
they attempt to reduce stress and
alleviate uncertainty during the cri-
sis period. Spiritual consultation
belongs to the least important
needs in relatives’ self-report as well
as medical staff perception, and
cannot be considered as a surrogate

for the information provided by
healthcare workers. The importance
of spiritual consultation may
increase for relatives once the initial
crisis period is over.
Compared to relatives, medical
staff assigned a relatively higher pri-
ority to only one need “to visit at
any time” than relatives did. This
probably reflected the reality of con-
tinuous presence of family members
in Israeli hospitals, even in critical
care units. This caused medical staff
to appreciate their contribution to
hospitalized pa tients.
Seven of the 10 most important
needs reported were in the
Assurance and Anxiety Reduction sub-
scale. The other three were in the
Information subscale. All top five
needs were related to Assurance and
Anxiety Reduction. This finding
might indicate the major concern
of Jewish and Arab families is the
health condition of their hospital-
ized relatives. They need to be sure
about the prognosis and quality of
care received. These findings were
consistent with those of others (Al
Ghabeesh et al., 2014; Al-Mutair et
al., 2014), who found these sub-
scales were perceived as important or
very important. Families of hospital-
ized patients may need information

to be certain about the progress of
the patient’s condition. The infor-
mation may be obtained from
healthcare providers or by being
with and seeing the patients.
Information about the relative and
tracking his or her progress was
needed to alleviate family members’
stress and uncertainty.
Six of the 10 least important
needs identified by family members
were listed in the Support subscale.
The other four items were listed in
the Proximity and Accessibility and
Comfort subscales. These findings
were consistent with the findings of
other studies conducted with differ-
ent cultures (Al Ghabeesh et al.,
2014; Al-Mutair et al., 2014). Family
members’ concerns were concen-
trated on the condition of their
loved ones during this period of cri-
sis, and they might sacrifice their
own needs for support and personal
comfort to give time to the health-
care team to provide care for their
loved ones. In the Arab and East-
origin Jewish cultures, families are
large and characterized by strong
ties among members (Sharabi,
2014). Adult members might partic-
ipate in the members’ health care,
seeking information or even mak-
ing personal decisions. Visiting and

providing support to families of sick
patients is a social norm practiced
by families’ relatives and friends
which might decrease their percep-
tions of needs for support.
Family needs were not related
significantly to most relatives’ char-
acteristics. Almost all needs ranked
highly important for all relatives, so
there was little between-subject
variation in the scores. Only need
for information was related signifi-
cantly to gender identity and need
for support to hospitalization in the
surgical ward. These findings are
consistent with other studies in dif-
ferent countries (Fortunatti &
Felipe, 2014; Hweidi & Al-Shannag,
2014).
Female subjects rated the needs
“to see the patient frequently” and
“to visit at any time” as more
important than male subjects.
Closeness need might be more
important in women. Relatives with
experience visiting this department
perceived items “to know about
types of staff members taking care
of patient,” “to have visiting hours
changed for special conditions,”
and “to know specific facts concern-
ing patient’s progress” as less impor-
tant than those without such expe-
rience. Past experience of visiting

includes being familiar with depart-
ment routine and medical staff,
which made items related to those
needs less important for them.
This was the first research of ward
and ICU together. Family members
of ward patients perceived “to talk
Research for Practice
TABLE 3.
Mean Differences in Needs Items of Relatives with
Demographic Characteristics
Item No. Needs Item
Mean
Z p-Value
Gender Identity
Male Female
2(S) Have explanations of environment before going
into
3.27 3.54 4.57 0.035
13(I) Know why things were done for patient 3.43 3.68 4.26
0.041
18(S) Have a place to be alone while in the hospital 2.32 2.97
16.65 <0.001

19(I) Know exactly what is being done for patient 3.34 3.61
4.67 0.033
26(S) Have another person with you when visiting
critical care unit
2.48 2.95 6.93 0.010
38(I) Help with patient’s physical care 2.67 3.09 5.45 0.021
44(P) See patient frequently 3.45 3.61 4.61 0.034
Item No. Needs Item
Religion
Z p-ValueJewish Muslim
9(S) Have directions as to what to do at bedside 3.29 2.97 3.97
0.049
Item No. Needs Item
Relationship to Patient
Z p-ValueAdult Child Spouse Other
7(S) Talk about feelings about what has happened 2.68 3.22
3.00 4.37 0.015
30(S) Feel it is all right to cry 2.67 3.00 3.50 4.07 0.020
32(C) Have bathroom near waiting room 3.22 2.97 2.50 3.11
0.049
37(I) Be told about religious services 2.02 1.94 2.80 3.28 0.042
44(P) See patient frequently 3.69 3.31 3.10 4.67 0.012
Item No. Needs Item
Patient’s Location
Z p-ValueSICU Ward
7(S) Talk about feelings about what has happened 2.65 3.03
2.08 0.038

Item No. Needs Item
Previous Experience with
this Unit or Ward
Z p-ValueYes No
6(P) Have visiting hours changed for special
conditions
2.85 3.16 1.99 0.046
15(I) Know about types of staff members taking care
of patient
2.88 3.39 2.97 0.003
43(A) Know specific facts concerning patient’s progress 3.23
3.74 2.94 0.003
about feelings about what has hap-
pened” as more important than ICU
patients’ relatives, who have closer
contacts and more discussion with
medical staff. Relatives of SICU
patients were concerned for the
patient’s condition and set aside per-
sonal feelings; in the ward, relatives
appeared less stressed and more able
to recognize their own feelings.
This study found a difference in
some needs between children and
spouse, or other relatives. “To see
the patient frequently” was more
important to patients’ children.

Because most of the children visited
their parents after being at work,
they may have felt guilty in not
being able to provide their parents
all the care they wanted.
“To have directions as to what to
do at the bedside” was ranked by
Jewish relatives as more important
than by Arabs. Arab families are
more conservative regarding gender
and family hierarchy differences,
especially out of their home, com-
pared to Jewish families (Sharabi,
2014). When their loved ones are
hospitalized, cultural differences of
relatives become smaller and their
needs become universal. Relatives’
needs were independent from reli-
gious and religiousness. Researchers
were surprised to find no difference
in perceived need importance
between Muslims and Jews, and sec-
ular and orthodox relatives.
Limitations
Limitations of this study includ-

ed use of a convenience sample
from one hospital. Thus, generaliza-
tion beyond the sample and geo-
graphical area is limited. CCFNI
also may lack sensitivity in eliciting
needs of Israeli families who might
have different beliefs and values
than Western families.
Recommendations for
Future Research
Studies that use a larger sample
and recruit subjects from different
settings are recommended to validate
the findings. Future research is need-
ed to explore difference between per-
ceived and met needs of relatives dur-
ing patients’ hospitalization. Quali -
tative studies can help identity items
that may be missing from the CCFNI.
Also, research about family members
who do not come or cannot come to
the hospital would determine if they
have the same needs as those includ-
ed in the CCFNI.
Nursing Implications
Physicians and nurses must be
able to identify needs of family
members accurately to meet these
needs. Their detection, discussion,
and evaluation by the hospital staff
can lead to implementation of new
policies, such as increased continu-

ity in nurse and physician atten-
dance and more time spent provid-
ing information. This is an impor-
tant issue in patient-oriented care
and could improve family mem-
bers’ satisfaction. Knowledge about
family needs could help nurses plan
and implement appropriate early
interventions according to the
importance of these needs, chang-
ing the focus to a more holistic
approach that includes family needs.
Collaboration should be encour-
aged among physicians, nurses, edu-
cators, and administrators to meet
family needs. Specifically, family
need for information about their rel-
ative’s condition and prognosis,
delivery of information in under-
standable terms, and honest and
respectful care require special atten-
tion. Nurses’ recognition of families’
needs for information in under-
standable language should be an
essential element of any counselling
or intervention program. Using sim-
ple, clear terms and respecting fami-
ly members’ knowledge and con-
cerns could foster their understand-
ing of the patient’s condition and
their confidence in the quality of
care. Providing updated information
to the family, involving them in the
patient’s care, and including them in

discharge planning might decrease
their stress and increase their certain-
ty of the patient’s progress.
Conclusion
This study provides a scientific
approach to nursing science for hos-
pitalized surgery patients and their
families in the culturally diverse set-
ting of an Israeli hospital. The
Assurance and Anxiety Reduction
category was identified as the most
important need category. The need
to be assured the best possible care is
being given was identified as the
most important need.
REFERENCES
Al Ghabeesh, S.H., Abu-Snieneh, H., Abu-
Shahror, L., Abu-Sneineh, F., & Alha -
wamdeh, M. (2014). Exploring the self-
perceived needs for family members hav-
ing adult critically ill loved person:
Descriptive Study. Health, 6(21), 3005-
3012.
Al‐Mutair, A.S., Plummer, V., Clerehan, R., &
O’Brien, A. (2014). Needs and experi-
ences of intensive care patients’ families:
A Saudi qualitative study. …
NSG3029 W5 Project
Research Template Name

Cite the article reviewed in APA style:
***In the template, any direct quotes from the articles needs to
only include the page number.
Week 5 Template
Check the correct method used in your article
Quantitative Qualitative
Identify the research problem.
Identify the research purpose.
Summarize the literature review.
Identify the nursing framework or theoretical perspective.
Identify the research questions or hypotheses.
Identify the variables.
Identify and discuss the appropriateness of the design.
Describe the procedures for data collection.
Discusses the validity and reliability of the instruments, tools,
or surveys.
Describe the final sample.
Summarize the results including statistical analysis used or
other method of analysis.

Discuss the significance of the study. Did it resolve the
question?
Discuss the legal and ethical issues of the study. Include the use
of human subjects and their protection.
Describe any cultural aspects of the study.
Describe how the results of the research may affect future
nursing practice.
Apply the research to your nursing practice.
Crit Care Nurs Q
Vol. 42, No. 1, pp. 81–88
Copyright c© 2019 Wolters Kluwer Health, Inc. All rights
reserved.
Symptom Management and
Hospital Readmission in Heart
Failure Patients
A Qualitative Study From Portugal
Joana Pereira Sousa, MNSc, RN; Miguel Santos, PhD
This article reports a study aimed at identifying the factors that
result in hospital readmissions for
patients with heart failure. The high rates of readmission are
often due to a lack of knowledge
about symptoms and signs of disease progression, and these
Portuguese nurses believed that read-

missions could be decreased through disease management
programs in which patients assumed
a more active role in self-care. A study was designed to identify
broad categories of problems
that lead Portuguese patients with heart failure to be readmitted
to hospital. Semistructured inter-
views were conducted, recorded, and submitted for content
analysis, revealing 3 main categories
for targeting: health management, behavioral management, and
psychological support. This study
revealed that patients with heart failure seem to struggle with
management of multiple treatment
regimens during the long course of their chronic illness. Based
on these interviews, authors con-
clude that a disease management program be tailored expressly
for the Portuguese culture and
their lifestyle. Key words: disease management, heart failure,
hospital readmission, self-care
behavior
H EART FAILURE (HF) is considered amajor public health
problem world-
wide1,2 and is expected to continue to
increase in coming years.1,3 HF is a life-
threatening event with fast onset,3 charac-
terized by fatigue, breathlessness at rest or
Author Affiliations: Instituto de Ciências da Saúde,
Universidade Católica Portuguesa, Porto, Portugal
and Cardiology Unit/Heart Failure Intensive Care
Unit, Centro Hospitalar e Universitário de Coimbra,
Portugal (Ms Sousa); and Centro de Investigação
Interdisciplinar em Saúde - Instituto Ciências da
Saúde, Universidade Católica Portuguesa, Porto,
Portugal (Dr Santos).

The authors thank Editage (www.editage.com) for
English language editing.
The authors have disclosed that they have no signif-
icant relationships with, or financial interest in, any
commercial companies pertaining to this article.
Correspondence: Joana Pereira Sousa, MNSc, RN, Car-
diology Unit/Heart Failure Intensive Care Unit, Floor 3,
Centro Hospitalar e Universitário de Coimbra, Prac-
eta Prof. Mota Pinto, 3000-075 Coimbra, Portugal
([email protected]).
DOI: 10.1097/CNQ.0000000000000241
on exertion, and fluid retention occurring
mostly in the legs, ankles, and lungs.3,4
Furthermore, it is associated with frequent
hospital readmission, poor quality of life,
high mortality, and financial problems.5-8
It has been previously reported that about
50% of the population in industrialized coun-
tries is at risk of being hospitalized with HF.9
In addition, these same patients are likely to
be readmitted to the health system within
6 months after discharge,9 leading to a health
system burden.10 Some of the main causes
for readmission include premature discharge
and educational and follow-up inefficacy, sug-
gesting that about half of these readmissions
could potentially be prevented.6,9,11 How-
ever, it is also possible that because of the
overwhelming level of responsibility regard-

ing disease management (eg, medication man-
agement, exercise, resting of the legs, and eat-
ing habits) and difficulty in coping with the
multiple lifestyle changes required by HF, it is
difficult for them to engage in recommended
self-care behaviors.11
Copyright © 2019 Wolters Kluwer Health, Inc. Unauthorized
reproduction of this article is prohibited.
81
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mailto:[email protected]
82 CRITICAL CARE NURSING QUARTERLY/JANUARY–
MARCH 2019
Self-care can have different meanings,
depending on the underlying theory.4,12
According to Riegel et al,4 self-care is the
decision-making process through which pa-
tients adopt specific behaviors to main-
tain physical stability (eg, monitoring HF
symptoms and therapeutic adherence) and
promptly react when symptoms are first de-
tected. In the context of HF, these self-care
behaviors include adherence to the treatment
regimen, symptom monitoring, and preven-
tion of heart deterioration.6,9,11,13,14 In pa-
tients with HF, self-care behaviors include de-
tection of initial symptoms of the disease,
which allows them to make appropriate de-
cisions about the best course of action re-

garding the implementation of proper treat-
ment strategies.4,11 Riegel and colleagues11
further subdivided self-care into 2 additional
subtypes relevant to HF: self-care mainte-
nance (which involves the choice of behav-
iors that tend to maintain physiologic sta-
bility) and self-care management (which in-
cludes a response to symptoms when they
first occur). Based on these 2 types of self-
care for HF management, patients may ben-
efit from a 2-stage disease management pro-
gram (DMP). In this DMP, patients (1) would
be able to start a decision-making process and
(2) would learn about the disease to identify
health problems and implement strategies to
solve them.15 According to the European So-
ciety of Cardiology guidelines for HF, such a
program should be provided in specialized HF
clinics with health professionals (eg, nurses,
physicians, pharmacists, and physical thera-
pists) who are experts in this disease, with
the goal of developing specific HF care and
better outcomes.16,17
Although a previous study described the
main categories of problems for a sample of
patients from the United States,18 it is not
clear whether the same categories are present
in patients with HF from a southern European
country. In this study, the aim was to iden-
tify broad categories of problems that lead
Portuguese patients with HF to be readmit-
ted to hospital, through analyses of semistruc-
tured interviews with patients with HF, car-

diologists, and expert nurses in a cardiology
ward. Based on these interviews, the first in-
tent was to determine why patients with HF
do not contact their doctors or nurses when
symptoms first start (eg, weight gain, body
edema, or tiredness) and second, what health
care providers can do to meet patients’ needs
to engage them and change their behaviors.
METHODS
Design
This study was based on the frame-
work of complex interventions pro-
posed by the Medical Research Council
(MRC),19 which involves 4 phases: devel-
opment, feasibility/piloting, evaluation, and
implementation.19,20 This study represents
primary research, which is part of phase
I (development) of the MRC framework,
using qualitative methodology. According
to the MRC.19 complex interventions allow
a clear and detailed description of all the
components of the experimental and control
interventions, providing a better understand-
ing of the feasibility and effectiveness, as well
as optimizing dissemination and implemen-
tation of the experimental intervention. This
initial qualitative study allowed identification
of themes to be developed based on inter-
views with participants. In combination with
a systematic literature review, these themes
form the basis of a complex intervention to
be later implemented in a DMP. Therefore,
this study was designed to ensure that the

future choice of intervention would be based
on participants’ needs, rather than on the
researcher’s opinion or preference. In short,
the present study constitutes phase I of a
larger study that will be later evaluated in a
DMP for patients with HF.19,20
Sample
For this study, a convenience sample was
composed of 5 patients (Pt) hospitalized for
primary HF, 2 cardiologist physicians (C), and
3 nurses (N) who were experts in HF, from
a cardiology ward in Centro Hospitalar e
Hospital Readmission in Heart Failure 83
Universitário de Coimbra, Portugal. Inclusion
criteria for patients were being older than
18 years, admitted into an HF cardiac ward,
and consented to be interviewed for this
study. Patients were not currently involved in
a structured DMP; thus, they were receiving
little information about what to do if an esca-
lation of symptoms was detected.
Procedure
All participants were interviewed and ap-
proached face-to-face by the primary re-
searcher (J.P.S.), a registered nurse in this

setting, in a separate room of the cardiol-
ogy ward of Centro Universitário e Hospita-
lar de Coimbra. The cardiologist physicians
and nurses who participated were coworkers
of the primary researcher. The patients inter-
viewed had been admitted with chronic HF,
had an acute escalation in their symptoms,
were available at the time of the interview,
and consented to be interviewed for this
study. At the time of the interview, the pri-
mary researcher and the patients did not have
an existing relationship. The interviews took
place during a 2-month period and lasted ap-
proximately 30 minutes each. The semistruc-
tured interviews were recorded and followed
by verbatim transcription.
Analysis
Content analysis was conducted using the
NVivo 10 program for qualitative data, by the
primary researcher. After transcription, key
terms were identified, and themes emerged.
The coding process was reanalyzed 3 times,
wherein the main categories were narrowed
down from 4 to 3. Key terms were then reana-
lyzed to track variability of themes. Lastly, key
terms were grouped into main categories.
Ethical considerations
All participants provided written informed
consent for the interviews. The Committee
for Ethics of Centro Hospitalar e Universitário
de Coimbra approved this study. This investi-

gation also followed the principles defined in
the Declaration of Helsinki.21
RESULTS
Analysis of the semistructured interviews
revealed 3 main categories: health manage-
ment, behavior management, and support
received, which can be seen in the Table.
Health management
The category health management was re-
lated to patients’ knowledge about HF signs
and symptoms. It also included the ability to
follow the therapeutic regimen as specified
by health care providers (eg, prescriptions),
the ability to adopt a specific lifestyle, and
knowledge about when to contact the physi-
cian. Examples of this include the following:
“I know I must walk a little bit every day.
Table. Emergent Themes From Semistructured Interviews
Emergent Themes Subthemes Participants
Health management Contact doctor when feeling worse
Follow providers’ prescriptions (eg,
exercise and diet)
Knowledge about heart failure signs
and symptoms
Patients (Pt1, Pt2, Pt3, and Pt4)
Cardiologist physician (C1)

Behavior management Lack of knowledge
Consciousness of lifestyle errors
Therapeutic noncompliance
Patients (Pt1, Pt2, Pt3, Pt4, and Pt5)
Cardiologist physician (C1 and C2)
Nurses (N1, N2, and N3)
Support received Longer and regular clinic visits
Home visits
Family and patient education
Telephone follow-up
Patients (Pt3, Pt4, and Pt5)
Cardiologist physician (C1 and C2)
Nurses (N1, N2, and N3)
MARCH 2019
I should drink about a liter of water ( . . . ) and
not eat salty food and avoid sugars” (Pt1), and
“Yes, I am careful at home, with the amount
of water and food” (Pt2). During interviews,
it was found that, of 5 patients, 4 mentioned
information related to symptom identification
(such as symptoms indicative of a worsening
health condition). For example, “I am here
because of shortness of breath and swollen
legs” (Pt4) or “I walked two or three steps

and became distressed” (Pt1). Most impor-
tantly, these patients were not only able to
identify these signs and symptoms but also
able to decide when they should contact
their physician. For example, “then, I tele-
phoned my cardiologist” (Pt1). In contrast,
health professionals generally did not men-
tion these symptoms in their interviews. Only
one physician—an exception to this trend—
mentioned the following: “to seek medical
advice and contact the medical and nursing
teams when there is a worsening of symp-
toms, for example, daily weight (if there is
weight gain) or starting to become tired or
short of breath” (C1). However, neither the
other physician nor the nurses mentioned
these symptoms in their interviews (see the
Table).
Behavior management
This theme showed a general lack of
knowledge of the signs and symptoms of the
disease. For example, patients mentioned
that “at medical consultation, the physician
told me to stay and be admitted to hospital
because of my health complaints (tiredness
and fatigue)” (Pt3) and that “I came to
the hospital only when I couldn’t sleep
anymore, I slept sitting with several pillows
under my back. My legs were swollen . . . ”
(Pt3). In addition, patients also mentioned
being self-aware of not complying with the
required lifestyle. For example, one patient
mentioned, “In reality, I should fulfill the wa-
ter restriction, but I drink much more than is

recommended. I struggle meeting this kind of
guideline because I have had this problem for
so long” (Pt3). Meanwhile, another patient
mentioned that despite having the intent to
follow the health worker’s suggestions, work-
ing far from home made it difficult to change
behaviors related to self-care: “I have been
working abroad for 24 years and it is really
hard to follow any kind of guideline because
I have lunch in restaurants and at night I eat
whatever I have. I come home every two
weeks” (Pt3). One patient also mentioned
not obeying health care instructions, despite
being aware that this would most likely lead
him to hospital readmission: “sometimes I
drink wine that I should not drink. Also [I
drink] beer and should be more careful with
the food [I eat]” (Pt5).
Analysis of physicians’ interviews sug-
gested that changing self-care behaviors
might be hard for patients. One physician
mentioned that “there are people for which
the intervention is not effective, even with
regular information sessions. This is either
because they do not have any nearby fam-
ily, or they live alone, or they are alcoholics”
(C1). This physician concluded that “the
biggest cause of heart failure decompensa-
tion is non-compliance.” The interviews with
these physicians also suggested that “patients
do not comply with the pharmacological reg-
imen and fluid restriction” (C2). These pa-
tients also were not following a proper “diet,
not exercising, in other words, not living a

lifestyle adjusted to his chronic disease” (C1).
Analysis of nurses’ interviews revealed that
behavior management also included “thera-
peutic non-compliance” (N2), and “not being
careful with food regimen and fluid and al-
cohol intake” (N3). For nurses, the main fac-
tor in “getting worse is the failure in fluid in-
take” (N1). They mention that, even though
patients received information about their ill-
ness and about decisions to make when first
signs of complications were detected, “after a
week or two they start to forget the education
received, if not recalled” (N1). Other nurses
mentioned that patients “have the notion that
they should not drink large amounts of liq-
uids, should not drink alcohol, and should not
smoke. However, they are not yet motivated.
There is some reason why they keep engaging
in inappropriate behaviors” (N1). In addition,
these nurses also mentioned that some pa-
tients may think that because they are “tak-
ing the medication, they are controlled and
make food mistakes,” apparently, due to “lack
of knowledge” (N2).
Support received

In this category, both patients and health
care providers mentioned the importance
of having regular visits. For example, one of
the patients explicitly mentioned, “Instead
of making one annual visit to the physician
(in the clinic), these should take place more
regularly. I am willing to come to the hospital
more often and be assessed by a nurse”
(Pt5). In the interviews, both physicians and
nurses suggested that, if a regular visit to the
clinic was not feasible, a telephone follow-up
should take place. According to the physi-
cians and nurses, health professionals should
be able to “periodically ( . . . ) telephone our
patients to determine if they are following
the therapeutic regimen or not, and how
their weight is evolving. This is a way to
detect heart failure decompensation” (C2);
or as a nurse put it, “if they do not remember
( . . . ) I think there should be an effort from
us (healthcare providers), with a telephone
call, because eventually all the information
taught will be forgotten. Then there will
be the temptation (of increasing fluid in-
take . . . ), they will start to decompensate,”
(N3) and eventually end up being admitted
to emergency care or the intensive care
unit.
As a possible solution for health and be-
havior management, physicians and nurses
suggested implementing a structured edu-
cational program. According to one nurse,
patients should receive “several educational
sessions, which are fundamental; we should
implement educational sessions in all clinic

visits, because they (patients) need this kind
of education” (N2). These sessions should
include reminding the patient about illness
progression and necessary lifestyle changes.
As one physician put it, “first of all, the
concept of heart failure as a disease must be
well clarified. This includes why a patient
has heart failure and what he/she can do to
adjust his/her daily life” (C1). In addition,
knowing when to take specific actions was
also considered a key feature, as mentioned
by a nurse: “If a patient starts to feel shortness
of breath or tiredness, this patient should not
stay at home, because staying at home will
probably worsen the health problem, and the
patient will eventually arrive (at hospital) in
a deteriorated condition” (N3).
During these interviews, it was also no-
ticed that some patients knew they should ad-
here to health care providers’ prescriptions
to avoid hospital admissions: “what counts is
to meet the most guidelines” (Pt5); however,
unfortunately, patients tend to forget if not
reminded.
DISCUSSION
Self-care is a decision process through
which the patient has the ability to
choose between different health-influencing
behaviors.2,3 This process helps patients
maintain an adequate physical status (moni-
toring signs and symptoms and therapeutic
regimen adherence), and prompts an early

and adequate response when necessary.4,11
In HF, self-care is believed to be relevant
because previous studies have demonstrated
that DMPs run by a multidisciplinary team
can lead to improvements in self-care, which
are followed by improvements in overall dis-
ease management.22 Specifically, explaining
pathology in nontechnical terms and training
patients to identify early signs and symp-
toms of the disease have been associated
with fewer hospital readmissions or shorter
stays.23 Although education seems to play a
key role in disease management, a previous
systematic review on HF education and
self-management24 described a gap between
the information given to patients and actual
performance of self-care in patients with
HF. Thus, even if information is given to a
patient, this does not necessarily mean that
he/she will be able to use it appropriately
at a later time. During this study, interviews
seemed to support these previous findings,
MARCH 2019
with health professionals indicating that, in
follow-up visits, patients did not know which
strategies they should adopt to improve their
health status or in which situations they

should contact health professionals. These
findings generally support the notion that
giving information to patients is no guar-
antee of future adequate self-care. Instead,
these results indicate that, in addition to the
information given, health care professionals
should ensure that patients with HF have
actually understood the message and are
able to identify early signs and symptoms
of the disease. Lack of knowledge has been
reported to be the cause of patients not
recognizing signs and symptoms, leading to
delays in searching for specialized help.25,26
In addition, as found in previous studies,5 all
of those interviewed in our study (patients,
nurses, and physicians) considered manage-
ment of signs and symptoms to be a major
problem that should be addressed in a DMP.
According to them, this could be achieved
if the education program was followed by
telephone reminder calls.
These findings indicate that educational
programs for patients with HF should fo-
cus on self-care behavior, mostly in terms
of self-care maintenance and self-care
management.27 Self-care maintenance re-
quires counseling (by health care providers)
on therapeutic adherence, low-sodium diet,
physical exercise, preventive behaviors, and
an active monitoring of signs and symptoms
by the patient.2,3 Self-care management
focuses on patient decision-making, response
to signs and symptoms of illness, recognition
and evaluation of body changes (eg, edema

of some body parts), implementing treatment
strategies (eg, taking an extra pill when nec-
essary), and evaluating the response to this
process.4,11 In HF, self-care is mostly related
to self-care maintenance, in which patients
try to maintain physiological stability for a
longer period.7 As HF is a chronic disease,
achieving self-care will most likely require
a change in a patient’s behaviors and habits
and patients will have to continuously decide
what is best for their health.28
Our interviews showed that some patients
contacted health care providers as soon as
the first symptoms and signs appeared, while
others went straight to the hospital emer-
gency department. These results suggest that
there may be 2 different types of patients
with HF: those who understand relevant in-
formation and contact health care providers,
and those who do not understand the neces-
sary information and may need additional re-
inforcement or further learning periods.29 As
mentioned earlier, self-care can be subdivided
into self-care maintenance (ie, behaviors that
maintain physiologic stability) and self-care
management (ie, response to symptoms).11
Previous results and this study suggest that,
although both types should be targeted in a
DMP for HF, self-care management seems to
be particularly relevant.6
The present study interviewed patients
who were in a cardiology ward and were
not yet stable (ie, acute HF condition). In a

previous study conducted with a larger num-
ber of stabilized patients with HF,18 similar in-
terviews revealed 4 components/categories:
symptom recognition, symptom evaluation,
treatment implementation, and treatment
evaluation. Several variables could account
for the differences in categories between the
previous study and this one. For example, it is
possible that cultural differences, the number
of interviews (higher in Dickson et al18), in-
terviewing patients in different disease stages
(stable in Dickson et al18 and acute in this
study), or a combination of factors may have
an influence. However, despite these differ-
ences, it is noteworthy that the sequence
of disease management/symptom identifi-
cation/taking immediate adequate action is
common to both studies. This means that de-
spite cultural and methodological differences
of these studies, in both cases, the prompt
identification of disease-worsening situations
and taking appropriate actions was consid-
ered to be a fundamental issue. Thus, the re-
sults from this and the previous study indicate
that an important effort should be made to
ensure that HF DMPs improve patients with
HF ability to detect symptoms and respond
appropriately. Further support for this comes

from Ahmad et al,30 who found that distress
symptoms and illness were patients’ main rea-
sons for hospitalization, while patients’ be-
haviors such as diet and medication adher-
ence were identified by physicians as the
main reason for hospital admission.30 Note
that, in the study reported here, these reasons
(ie, distress symptoms, illness, and patient’s
behaviors) were grouped in the common
theme “behavior management.” Thus, thera-
peutic noncompliance and lack of knowledge
(about symptom escalation and the disease it-
self) seem to be the main motive for hospital
admission in our study, in Dickson et al,18 and
in Ahmad et al.30
Study limitations
The major limitations of this study are the
small sample size and lack of generalizability.
Even though it took place in a university hos-
pital, the ward into which patients with HF
were admitted had only 5 intensive care unit
beds and 5 intermediate beds. In addition,
hospital stays were usually long, preventing
more participants to be included in this quali-
tative research. In future research, it is impor-
tant to increase the sample size and settings
to encompass more patients and health care
providers to support these findings.
Implications
� HF is a chronic condition that requires
symptom recognition by patients.

� It is important to teach/learn about HF
symptoms to manage early signs of de-
compensation and contact health care
providers as soon as possible to avoid hos-
pital admissions.
� Focusing on a step-by-step intervention can
be a useful strategy to improve self-care
management in patients with HF.
CONCLUSION
Overall, the results of this study support
previous findings, and suggest the need to im-
plement an educational program for patients
with HF. This program should, according to
our results, focus on 3 main categories of self-
management: health management, behavior
management, and support received. In addi-
tion, this and other studies indicate that a
DMP for HF should ensure that patients can
identify and act accordingly when changes
first occur in their health status.
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