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ONLINE EXCLUSIVE
The Nurse's Relationship-Based Perceptions
of Patient Quality of Life
Cynthia R. King, PhD, NP RN, FAAN, Pamela Hinds, PhD, RN, CS,
,
Karen Hassey Dow, PhD, RN, FAAN, Lisa Schum, BA, and Catherine Lee
Key Points . . .
Purpose/Objectives: To explore patients' quality of life
(QOL) as defined by RNs in adult and pediatric oncol-
ogy settings and to examine, from the perspectives of
Nurses rely on their relationships with patients to assess quality
clinical nurses, the knowledge that is needed to apply
of life (QOL).
QOL research outcomes in clinical practice.
Design: Qualitative research design using a focus
Tools that are available to assess QOL should be made more
group technique to explore the research questions.
clinically relevant.
Setting: Three sites (i.e., a pediatric research center in
A new conceptual model has been developed for future research.
western Tennessee and oncology nurses from a chapter of
the Oncology Nursing Society [ONS] in Central Florida
and another in upstate New York).
Sample: 24 oncology nurses working with adult or pedi-
(King et al., 1997). Working group members considered QOL
atric patients or both.
Methods: Oncology nurses were approached at work
issues from theoretical, research, and clinical perspectives and
or through their local ONS chapters for a focus group dis-
addressed a list of specific questions (see Figure 1). The group
cussion.
concluded that nursing had made unique contributions to QOL
Findings: 47 unique themes were reported by all five fo-
research, particularly in the areas of patients' spiritual needs
cus groups in response to three questions. The most fre-
and model development. Recommendations of the state-of-the-
quently reported themes were (a) Using the Patient's Stan-
knowledge conference included the pressing need to evaluate
dard, (b) Nursing Strategies, (c) Differences Decrease QOL
the relevance of available information about QOL for nurses in
Care, (d) Maintaining Social Interests, (e) Insightful Rela-
clinical practice (King et al., 1997). The purpose of this article
tions With Patient, and (f) Nurse-Patient Communication.
is to report the findings of a qualitative study designed to ex-
Conclusions: Nurses' assessments of QOL primarily are
plore patients' QOL as defined and perceived by RNs in both
based on their established relationships with their pa-
tients. From these relationships, nurses derive perceptions
adult and pediatric oncology settings and examine, from the
of patients' QOL and clinical direction for interventions to
perspectives of clinical nurses, the knowledge that is needed to
positively influence QOL. Based on these findings, the in-
apply QOL research outcomes in clinical practice.
v e s t i g a t o r s developed a conceptual model of the
QOL is a vital dimension of care provided by oncology
nurses' relationship-based perceptions of patients' QOL.
nurses. Oncology nurses are important providers of cancer care,
Implications for Nursing: The current QOL measures
have minimal importance to nurse clinicians. Because
nurse clinicians rely on their relationships with patients to
Cynthia R. King, PhD, NP, RN, FAAN, is a nurse consultant for Spe-
assess QOL, available tools should be made more clini-
cial Care Consultants in Rochester, NY; Pamela Hinds, PhD, RN,
cally useful. Further research should be conducted using
CS, is the director of nursing research at St. Jude Children's Re-
the new conceptual model, specifically to learn more
search Hospital in Memphis, TN; Karen Hassey Dow, PhD, RN,
about how nurses complete a QOL assessment within
FAAN, is a professor in the School of Nursing at the University of
the context of the nurse-patient relationship.
Central Florida in Orlando; Lisa Schum, BA, is a pediatric oncology
education student at St. Jude Children's Research Hospital; and
Catherine Lee is a pediatric oncology education student at St. Jude
n 1995, the Oncology Nursing Society (ONS) convened
I
Children's Research Hospital and a nursing student in the School of
a working group of nurses and psychologists to exam-
Nursing at Union University in Jackson, TN. (Submitted January
ine the state-of-the-knowledge concerning quality-of-life
2002. Accepted for publication April 5, 2002.)
(QOL) issues for patients with cancer and their family members
and healthcare providers; the results were published in 1997
Digital Object Identifier: 10.1188/02.ONF.E118-E126
KING­ VOL 29, NO 10, 2002
ONF ­ VOL 29, NO 10, 2002
E118
obtain perceptions about a defined area of interest in a re-
How do you define quality of life (QOL)?
laxed and nonthreatening environment. Focus groups help to
What are the dimensions of QOL?
provide a candid perspective of patients' QOL as defined
What are the common ways to measure QOL in patients with
and perceived by RNs in adult and pediatric oncology set-
cancer?
tings; focus groups also serve to expose the strengths and
What are reliable and valid predictors of QOL in patients with
weaknesses of information and tactics aimed at improving
cancer?
patients' QOL in current clinical practice.
Why is QOL important to nursing as a discipline?
The focus groups were conducted in upstate New York,
What nursing interventions improve QOL?
western Tennessee, and central Florida. After obtaining insti-
tutional review board approval from the University of Central
What is oncology nursing's role in QOL research?
Florida, three investigators contacted oncology nurses who
What are the clinical implications in QOL?
worked with adult or pediatric patients with cancer or both
What prior research has been done in QOL in patients with
and who were members of their local chapters of ONS to
cancer?
elicit interest in this study. The investigators provided de-
What should be the future research directions for oncology
tailed information to interested nurses, explained the intent
nurses related to QOL?
of the focus group discussion, and answered any questions.
Figure 1. Questions Used to Guide Discussion of Quality of
Next, the participants gave written informed consent, and a
Life and the Cancer Experience
mutually agreed upon time and place were selected for the
focus group discussion. A copy of the article "Quality of Life
Note. From "Quality of Life and the Cancer Experience: The
State-of-the-Knowledge" by C.R. King, M. Haberman, D.L.
and the Cancer Experience: The State-of-the-Knowledge"
Berry, N. Bush, L. Butler, K.H. Dow, et al., 1997, Oncology Nursing
(King et al., 1997) was given to each participant to read prior
Forum, 24, p. 28. Copyright 1997 by the Oncology Nursing Soci-
to participation in the focus group to be a stimulus as well as
ety. Reprinted by permission.
a knowledge starting point. The article summarized QOL wis-
dom in nursing to that time. The investigators hoped that by
reading the article, the nurse participants would be informed
and their views about QOL are meaningful for patients and
and therefore explain why this available wisdom was insuffi-
families (Fitch, 1998). Research has shown that QOL is sub-
cient for their practice needs. The three investigators con-
jective and unique for every person and that changes in QOL
ducted five focus groups that were comprised of three to six
over time depend on individual responses to the cancer expe-
nurses each from November 1998 to January 1999. Sessions
rience (Ferrell, Dow, Leigh, Ly, & Gulasekaram, 1995). Nurse
lasted approximately 1.5 hours. At the end of each focus
clinicians are aware of the difference in perceptions of patient
group session, participants received $25 as compensation.
QOL among patients, nurses, and physicians (Aaronson, 1986;
The focus groups were asked three questions to facilitate
Carr & Higginson, 2001; Cella & Cherin, 1987; Dow, Ferrell,
discussion.
Haberman, & Eaton, 1999; Ferrell & Dow, 1996; King, Ferrell,
· Quality of life--Could you say what the term means to
Grant, & Sakurai, 1995; Lindley & Hirsch, 1994; Newell,
you in terms of your nursing practice?
Sanson-Fisher, Girgis, & Bonaventura, 1998; Schipper &
· What helps you to use quality-of-life information in your
Levitt, 1985; Slevin, Plant, Lynch, Drinkwater, & Gregory,
own nursing practice on any given day?
1988; Sprangers & Sneeuw, 2000; Varricchio, 1990; Wilson,
· Was there any particular content in the article that you
Dowling, Abdolell, & Tannock, 2000). Healthcare providers'
found helpful about quality of life?
criteria for evaluating patients' QOL may differ from those of
In addition, participants completed a brief sociodemographic
patients because the providers' criteria may be based on their
questionnaire. The discussions were tape-recorded to ensure
own expectations of what is possible or optimal for patients.
accuracy for analysis and later were transcribed by a trained
At the core of oncology nursing practice is the value that
medical transcriptionist who had considerable experience in
human responses to illness are affected not only by the can-
transcription of focus group discussions.
cer but also by interpersonal, family, social, cultural, and
work relationships. Therefore, one of the most significant
Data Analysis
goals of nursing practice is to assess human responses to ill-
Each investigator independently reviewed the transcripts
ness. Consequently, the concept of QOL converges with this
of the focus group discussions. Next, two investigators
primary nursing goal throughout the entire cancer experi-
jointly created an initial coding dictionary containing a total
ence. QOL also is important to clinical practice because it
of 47 unique codes. The third investigator and three other in-
provides a shared language across and significant to many
vestigators used this dictionary to independently code each
health-related disciplines (King et al., 1997). Although the
of the transcribed focus group discussions. The interrater reli-
concept of QOL is an essential dimension of clinical care for
ability of coding a response from any of the groups of partici-
oncology nurses, little is known about how nurse clinicians
pants to any particular question was set at a minimum of
define and assess patients' QOL or how nurses apply QOL
75%. The transcripts of the focus group interviews then were
research outcomes in clinical practice.
analyzed for the occurrence of the 47 specific codes. A final
coding dictionary was constructed with all of the codes de-
Methods
fined and their frequencies summarized.
Codes were the first level of labeling. The codes were
This qualitative research design used the focus group tech-
grouped together for meaning (themes). After all data were
nique to explore the main research questions (Krueger, 1994;
coded and themes were defined, an inductive method of
Stewart & Shandasani, 1990). The focus group technique is
model development was used and certain themes were com-
ideally suited for this research study because it is designed to
KING ­ VOL 29, NO 10, 2002
E119
Table 1. Demographics
bined according to similarity of meaning and relatedness in
temporality (i.e., which code preceded another in time) and
Variable
n
effect (i.e., mutual positive or negative influence).
Gender
Results
23
Female
Male
11
All but one of the focus group participants were women, and
Ethnicity
all but three were Caucasian (see Table 1). Most of the nurses
21
Caucasian
had received baccalaureate degrees and provided direct pa-
African American
11
tient care. In addition, the participants were experienced nurses
11
Hispanic
who had worked an average of 15.9 years in nursing and an av-
11
Other
erage of 9.2 years in oncology. Two focus groups were com-
Highest nursing degree
prised of nurses who provided care to only pediatric patients
14
Associate
15
Diploma
with cancer, another two focus groups were comprised of nurses
11
Bachelor's
who cared for only adult patients with cancer, and the fifth fo-
13
Nurse practitioner
cus group was comprised of nurses involved in the care of ei-
11
Master's
ther adult or pediatric patients with cancer.
Position
A total of 47 unique themes were developed from the
14
Staff
coded segments reported by all focus groups in response to
11
Clinical nurse specialist
all questions. Responses of all focus groups to question one
11
Retired
contained 90 coded segments, those to question two con-
11
Disability
tained 181 coded segments, and those to question three con-
11
Administration
tained 87 coded segments.
11
Education
11
Coordinator
Question One: Quality of Life--Could You
11
Project RN
Say What the Term Means to You in Terms
13
Nurse practitioner
of Your Nursing Practice?
Work setting
17
Inpatient adult oncology
The most frequently reported themes in question one were
11
Inpatient pediatric
Using the Patient's Standard (n = 22) and Nursing Strategies
17
Outpatient medical oncology
(n = 15) (see Table 2). Using the Patient's Standard represents
11
Outpatient radiation oncology
nurses' belief that the most valid measure of QOL is what
12
Hospice care
patients believe it to be. As one nurse noted,
15
Ambulatory care (oncology)
Bone marrow transplant outpatient
11
I think that part of our job . . . is to find out what it is the
Age (years)
patient needs to know and to do because they have their
--
X = 43.5
­
own perceptions . . . [QOL] would mean something dif-
Range = 30­81
­
ferent to me, [it] doesn't mean the same thing to [the pa-
Years in nursing
--
tient].
X = 15.9
­
Range = 6­34
­
The Nursing Strategies theme signifies the idea that spe-
Years in oncology nursing
cific tactics and procedures can be implemented to directly
--
X = 9.2
­
improve patients' QOL. For example, one nurse said,
Range = 1­25
­
I think quality of life in regards to the patient population
N = 24
I'm working with currently . . . is trying to understand the
goals that they have set for their disease process and their
treatments and trying to realistically help them meet those
Another believed the Treating Souls approach was important
goals, and [I] often think of quality of life in terms of day-to-
because it leads to treatment of the "whole person instead of
day [interaction] with patients.
just . . . an illness." One nurse discussed Management of the
Although other themes emerged, these two were the most fre-
Physical Self.
quently reported in all five focus groups.
If you can treat the symptoms of the chemo and the pain
Other frequently reported themes were Treating Souls (i.e.,
from the cancer and all these things, then you're increas-
meeting patient care needs beyond those directly related to
ing the quality of life.
the illness) and Management of the Physical Self (i.e., at-
tending to patients' physical changes can influence QOL).
All of these themes represent specific parts of patients' envi-
Although Treating Souls and Management of the Physical
ronments, relationships, or physicality that oncology nurses
Self were not mentioned as frequently as Nursing Strategies
found useful in improving or maintaining QOL.
and Using the Patient's Standard, nurses made significant
Question Two: What Helps You to Use
statements describing these themes. One comment related to
Quality-of-Life Information in Your Own
Treating Souls was
Nursing Practice on Any Given Day?
Yeah, you have to treat more than their sodium and their
potassium . . . you got to treat their souls and give them
Surprisingly, rather than responding to the question
that extra to fight.
asked, respondents interpreted this question as application to
ONF ­ VOL 29, NO 10, 2002
E120
Table 2. Most Commonly Used Themes in Response to Question One
Theme
Definition
n
%
Using the Patient's
Recognizing that the most valid measure of a person's quality of life (QOL)
22
24
Standard
is what that person believes it to be and that this belief could be differ-
ent from what others believe and could vary by situation.
Staff recognizes that certain tactics and considerations can increase pa-
15
Nursing Strategies
17
tients' QOL, including recognizing patients' need for control, family and
friends, hope, and symptoms to be managed effectively and for making
plans, meeting social needs, and maintaining a lifestyle somewhat similar
to that before therapy.
Treating Souls
Staff speaks of meeting patients' care needs in all aspects as a way of assist-
15
16
ing patients to successfully address the demands of the illness; in part, pa-
tients' success is attributed to the staff caring about patients.
Management of
Staff identifies that attention to the state of patients' bodies, such as man-
14
14
the Physical Self
aging side effects and adjusting role demands to cope with physical
changes, can increase QOL.
quently in response to question two in four of the five groups
clinical practice. The most frequently reported theme in re-
(n = 18). The Nursing Strategies theme also was reported fre-
sponse to question two was Maintaining Social Interests (n =
quently in reaction to question two.
20), defined as helping patients remain appropriately in-
volved in everyday life. One nurse spoke directly about
Question Three: Was There Any Particular
Maintaining Social Interests.
Content in the Article That You Found
Helpful About Quality of Life?
I think most of the nurses . . . focus on getting patients to
tell us how this year's going to be different. What about
Question three was not asked during one focus group in
[patients'] holidays they're going to need to tone down,
Florida because of time constraints. This inconsistency in
give away, get help with . . . and that's a big quality-of-
procedure potentially affected both the number and, perhaps,
life issue that we may not address at other times during
the type of themes. However, this study is exploratory; there-
the year, but just to make sure that people who are expe-
fore, the missing data probably detract minimally from the
riencing fatigue or other side effects . . . will be able to
interpretability of the nurses' responses to the question.
deal effectively with what's important to them over the
The two most frequently reported themes generated in re-
holidays. . . . It's a good time of year for quality-of-life
sponse to this question were Differences Decrease QOL Care
issues.
(n = 11) (i.e., cultural, economic, and behavioral differences
can be barriers in QOL assessment and intervention) and
Another group of nurses described in detail the measures
Sharing Information (n = 8) (i.e., reading and discussing QOL
taken by one hospital to provide entertainment and activities
information leads to better QOL care). An example of Differ-
to maintain social interests and thus foster patients' QOL. The
ences Decrease QOL Care is
Maintaining Social Interests theme was present in the re-
sponses of nurses in four focus groups. Another common re-
I have no clue what my Hispanic families perceive their
sponse to this question was labeled as Insightful Relations
quality of life, what their quality of life would be, what
With Patient (n = 19) in which nurses' close relationships with
they think quality of life is, I only have my perspective.
patients and their families permitted nurses to complete more
Another participant said,
accurate QOL assessments and interventions. In discussing
Part of paying attention to quality of life when you could
Insightful Relations With Patient, one nurse said,
be ethnically or culturally different is to be willing to ask
You establish a bond with them, and so then they do be-
direct questions about what is important to them and to
gin to trust you and they do begin to, you know, to look
explain when I make a mistake . . . what [paying attention
to you to help them when they have a problem.
to what is important to them] conveys to them is . . .
your willingness . . . to learn more about them, to pay at-
Nurse-Patient Communication (n = 14) was the label as-
tention to their quality of life.
signed to the concept that being physically present for pa-
tients creates opportunities to assess and address QOL issues.
In regard to Sharing Information, one respondent said,
For example, a participant said,
Whatever your tools are, they have to be easily, readily
I think it's really important for nurses to be paying atten-
usable in the clinical setting . . . they [the QOL tools]
tion . . . [nurses] . . . really focus on what the patient really
have to be that any nurse can pick up and use and say,
wants and needs and, and often [patients] are afraid to
"This is helpful."
speak up to a physician.
The Nursing Strategies theme again was identified in re-
This theme was assigned to responses of all questions by all
sponses from four focus groups to question three (n = 6). The
focus groups, but more than 80% occurred in response to
themes of Management of the Physical Self and Using the
question two. Using the Patient's Standard occurred fre-
Patient's Standard were reported frequently in response to
KING ­ VOL 29, NO 10, 2002
E121
and Remembering the Patient (i.e., being aware of memories
question three. All of these themes were represented in previ-
of particular patients and of the impact of those memories on
ous questions, indicating their importance to this sample.
families and survivors), with frequencies of 50% and 11%, re-
Frequencies of Themes Among Responses
spectively. This specific focus group identified aspects of
t o Any Questions
QOL issues that affected them personally and professionally,
The frequencies reported here correspond to overall fre-
whereas most other groups reported on the effect of QOL is-
quencies when coded segments from all five focus groups
sues on patients only. Interestingly, this group highlighted
and across all three questions were combined (N = 358). The
the importance of considering oncology nurses' emotional
six themes that most commonly were found in focus group
adjustment to patients' increasing or decreasing QOL. Re-
discussions were Using the Patient's Standard, Nursing Strat-
sponses to question two resulted in another example of
egies, Differences Decrease QOL Care, Maintaining Social
themes unique to one group's discussion. Sixty-two percent
Interests, Insightful Relations With Patient, and Nurse-Pa-
of responses by one group to question two (n = 26) were rep-
tient Communication (see Tables 3­5).
resented by the theme Maintaining Social Interests. This
Three themes (i.e., Using the Patient's Standard [13%],
group, which met in December 1998, may have had specific
Nursing Strategies [11%], and Differences Decrease QOL
or practice-specific reasons that would explain why they be-
Care [8%]) account for 32% of the reported coded segments
lieved attention to social roles was essential to QOL. This
in this study. Using the Patient's Standard was the theme that
theme was consistently reported by all but one of the groups.
was reported most often, and 44% of the reports of this theme
occurred in response to question one. Although Using the
Model Development
Patient's Standard was the predominant concern in most re-
sponses to question one, 45% of the reports of the Nursing
Using an inductive method of model development, certain
Strategies theme were to question two. Maintaining Social
themes were combined to form more abstract concepts that
Interests, Insightful Relations With Patient, and Nurse-Pa-
convey how nurses perceive patients' QOL (see Table 5). The
tient Communication had overall frequencies of 5.6%, 5.4%,
model emphasizes the relational basis of the nurses' assess-
and 4.6%, respectively.
ments (see Figure 2). Thus, nurses' QOL assessments prima-
The loosely structured format of the focus groups allowed
rily are based on the nurses' established relationships with
participants to generate discussion about their individual
their patients. From these relationships, nurses derive their
experiences and practice sites. As a result, not all themes were
perceptions of patients' QOL and clinical direction of the
represented equally among groups or in response to each
strategies that must be implemented to positively influence
question. For example, the type and frequency of question
QOL. Nurses develop relationships with patients and imple-
one responses of a focus group that was comprised of more
ment nursing strategies that directly affect patients and at-
experienced nurses who treated only pediatric patients with
tempt to influence the healthcare setting as an indirect way
cancer differed distinctively from those of the other focus
of influencing QOL. In turn, certain characteristics of the
groups. Two of the most frequently reported themes for this
healthcare setting (e.g., coworker appreciation of patients'
group were Being Affected by Patient (i.e., being profoundly
QOL concerns, availability of resources, time available to
influenced by an experience or experiences with patients)
address QOL issues) influence nurses' efforts to implement
Table 3. Most Commonly Used Themes in Response to Question Two
Theme
Definition
%
n
Staff recognizes that assisting patients in preserving the functional demands of
11
20
Maintaining
particular roles and remaining involved in life events or some type of distrac-
Social Interests
tion contributes to quality of life (QOL).
Staff recognizes the need to establish a positive, trusting initial relationship with
19
10
Insightful Relations
patients and families and that this relationship can be an important channel
With Patient
to observe behavior and ask revealing questions of patients and families to
adjust the staff's mood and behavior in an appropriate manner and pace
providing any treatment-related information so as not to overwhelm or
alarm them.
Recognizing that the most valid measure of a person's QOL is what that person
10
18
Using the Patient's
believes it to be and that this belief could be different from what others be-
Standard
lieve and could vary by situation.
Staff recognizes that certain tactics and considerations can increase pa-
10
18
Nursing Strategies
tients' QOL, including recognizing patients' need for control, family and
friends, hope, and symptoms to be managed effectively and for making
plans, meeting social needs, and maintaining a lifestyle somewhat similar to
that before therapy.
18
Staff recognizes that being physically present, especially when patients are
14
Nurse-Patient
not feeling well, is important to increasing QOL and can lead to opportunities
Communication
in which staff can listen to patients and even share QOL- or treatment-re-
lated information with patients, thus decreasing patients' anxiety and provid-
ing a reassuring presence.
ONF ­ VOL 29, NO 10, 2002
E122
Table 4. Most Commonly Used Themes in Response to Question Three
Theme
Definition
n
%
Differences Decrease
Staff recognizes that cultural, economic, and behavioral differences can
11
13
cause barriers in QOL assessment and effectiveness, especially when other
Quality-of-Life (QOL)
Care
issues are of more immediate concern or if the staff feels inadequately pre-
pared to appropriately manage these differences.
Staff recognizes that reading an article about QOL or discussing QOL topics
Sharing Information
18
19
creates opportunities to change personal beliefs, alter practice, consider
new uses of instruments, and become more aware of patient needs and
experiences; all ultimately lead to formal inclusion of QOL assessment gen-
erating findings that staff can trust.
Staff recognizes that certain tactics and considerations can increase pa-
Nursing Strategies
16
17
tient QOL, including recognizing patients' need for control, family and
friends, hope, and symptoms to be managed effectively and for making
plans, meeting social needs, and maintaining a lifestyle somewhat similar
to that before therapy.
Management of the
Staff identifies that attention to the state of patients' bodies, such as man-
15
16
Physical Self
aging side effects and adjusting role demands to cope with physical
changes, can increase QOL.
Using the Patient's
Recognizing that the most valid measure of a person's QOL is what that
15
16
Standard
person believes it to be and that this belief could be different from what
others believe and could vary by situation.
three geographically distinct locations and from adult and
strategies to improve patients' QOL. In this study, clinically
pediatric oncology settings suggest that the findings will be
based nurses reported that currently available research-based
information about QOL is not relevant to their particular pa-
valuable in other settings.
Although the focus of each interview question differed,
tient populations because it does not guide them in complet-
nurses' responses had a similar theme: Patients' QOL is what
ing an assessment of QOL or an appropriate intervention.
patients say it is. This emphasis on the subjective, personal
nature of patients' QOL was noted in only 5 of 15 defini-
Discussion
tions of QOL (Cella & Tulsky, 1990; Ferrans & Powers,
This study is one of a very few that directly solicited
1985; Hinds, 1990; Keith & Schalock, 1994; Vivier, Bernier,
& Starfield, 1994) included in a text about nurse and patient
nurses' perspectives regarding patients' QOL, specifically
how nurses define patients' QOL and make use of available
perspectives on QOL (King & Hinds, 1998). According to the
information (particularly research-based) about QOL. Find-
nurse participants in the current study, their strong emphasis
on patients' perceptions as the definition of patients' QOL oc-
ings are unique in their emphasis on nurses' relationship-
casionally resulted in tension between nurses and coworkers
based assessments of patients' QOL and on nurses' interven-
tions (e.g., managing symptoms, providing hope, controlling
and between nurses and family members. This suggests that
philosophic differences in the ways that staff and family define
for patient and family) designed to improve patients' QOL.
In addition, the similarity of findings among groups from
QOL affect interactions among healthcare team members and
Table 5. Model Concepts and Their Definitions
Concept
Definition
Nurse-Patient Relationship
Nurses rely on establishing strong rapport with patients and their family members, being physi-
cally present and technically competent to complete quality-of-life (QOL) assessments and
adjusting their own behavior, mood, and pace of providing treatment-related information.
Nurses' Perceptions of Patients'
Nurses recognize that their most valid measure of QOL is what the individual believes it to
QOL
be; this belief could differ from what others (including healthcare professionals and family
members) believe and could vary by situation.
Nursing Strategies
Actions can be initiated by nurses and directed toward improving patients' physical con-
dition, functional abilities, and social interests and implemented in consideration of pa-
tients' values, preferences, definition of normalcy, and need for hope.
Nurses' belief that the lack of a single or clear definition of QOL, clinical guidelines to assess
Clinically Obscure Research-
Based QOL Information
patients' QOL, and population-specific strategies to influence QOL all contribute to
nurses' conclusion that the findings from studies on QOL are not useful and contribute to
the low likelihood of their use in practice.
Environmental Characteristics
Nurses describe how rules and procedures and the general atmosphere of a healthcare
setting, as well as coworkers' views, can affect patient QOL and the nurses' ability to influ-
ence patient QOL.
KING ­ VOL 29, NO 10, 2002
E123
Environmental
Characteristics
Nurse-Patient
Nurse
Patient
Relationship
Nurses' Perceptions of
Patients' Quality of Life
Clinically Obscure,
Research-Based
Quality-of-Life Information
Nursing Strategies
Strong influence for clinical nurses
Research-based quality-of-life information is not helpful for clinical purposes, so it is used infrequently.
Figure 2. Nurses' Relationship-Based Perception of Patients' Quality of Life
making these assessments. In fact, Sprangers and Aaronson
among staff and family members. In addition, the nurses'
(1992) concluded that the most accurate proxy QOL ratings
comments indicated their belief that patients' QOL changes
are given by those who are in regular contact with patients,
over time and situations and that QOL differs considerably
including those who live in the same household or see pa-
among patients. This intra- and interpersonal variability sug-
tients most frequently in the healthcare system. Thus, a pri-
gests QOL assessments must be repeated so that key clinical
mary nurse who has regular contact with a patient can give
j u n c t u r e s are included in the assessments and that the
a sensitive QOL assessment and accurately estimate a
healthcare team is cautious when QOL assessments of differ-
change in the patient's QOL.
ent patients are compared. Because QOL can change over
Nurses' reliance on their relationships with patients as the
time with each patient and because patients differ from one
basis for trusting QOL assessments may help to explain the
another, interpreting just one data point is difficult. There-
participants expressed low enthusiasm for research-based
fore, repeated assessments would be more helpful. Change in
measures of QOL and other forms of research-based informa-
assessments over time may help to further define patients'
tion about QOL. Although 22 of 24 (97%) of the nurses con-
QOL.
veyed how important patients' QOL is to them, they were re-
M u l t i p l e coded segments and comments reflected
luctant to use nonrelationship-based research measures. In
nurses' personal efforts (e.g., being physically present, lis-
other words, nurses believe in the construct of QOL but not in
tening, asking certain questions) in assessing each patient's
the methods used in research to measure QOL. In their study
QOL and judging the validity of those assessments in large
about nurses' knowledge of patient QOL, Lindley and Hirsch
part on the basis of the nurse-patient relationship. The
(1994) found that nurses strongly valued the concept of mea-
nurses' reliance on their relationship-based QOL assess-
suring patient QOL, but they had little knowledge regarding
ments could raise concerns about the validity of such as-
its measurability; in particular, they knew little about the ex-
sessments, given the previously documented discrepancies
istence of reliable and valid tools for use in clinical practice.
between patient and proxy (e.g., physician, nurse, family
Participants in the current study indicated some familiarity
member) QOL ratings in research measures (Churchill et al.,
with such tools but were reluctant to use them because the
1987; Newell et al., 1998; Slevin et al., 1988). Certainly
tools were too cumbersome for use in routine care.
research is needed to determine whether differences in the
Certain limitations exist in this study. The style of the fa-
size and frequency of QOL ratings obtained from relation-
cilitator for each focus group differed. Although the same or
ship-based QOL assessments differ from those scores de-
similar codes emerged from all five focus groups, the fre-
rived from QOL research measures. Despite the general ac-
quency and intensity of the responses differed; this difference
ceptance that QOL is reported more accurately by patients
could have resulted from the use of differing prompts by the
and not by proxies (Ferrans, 2000; Osoba, 1994), proxies
facilitators. In addition, the nurses in each focus group ener-
who have regular, close contact with patients and who
getically participated in the discussion of QOL of patients
complete QOL assessments multiple times and during dif-
with cancer; therefore, the facilitators had difficulty in direct-
ferent situations have a better chance of matching patients'
ing the discussion and clarifying all responses. Finally, nurses
QOL reports because proxies most likely become skilled at
ONF ­ VOL 29, NO 10, 2002
E124
of interventions designed to increase discussions among staff
volunteered for this study; as a result, they may represent a
sample that has a unique interest in this concept and may not
members about patient-specific QOL and the impact of shar-
ing recent QOL information among staff members are intrigu-
truly represent other adult and pediatric oncology nurses.
ing new areas of study.
However, innovation in practice frequently is initiated by
nurses who have a special interest or existing knowledge in a
specific area.
Summar y
Assessment of patient QOL and altering care to improve
Nursing I m p l i c a t i o n s
QOL are important dimensions of care provided by nurse cli-
nicians. The oncology nurses who participated in this re-
This study provides certain implications for research. Most
search stated the importance of QOL in the clinical setting.
importantly, the current array of available QOL measures has
They emphasized the significance of considering QOL as a
only limited clinical usefulness to nurses who provide direct
subjective concept (i.e., based on the patient's perception),
patient care. Instead, these nurses rely on their relationships
the importance of the nurses' relationship-based assessments
with patients as the basis for making patient-specific QOL
of patient QOL (i.e., nurses rely on trusting relationships with
assessments. This self-reliance indicates that the nurse-patient
patients to assess QOL), the presence of identifiable barriers
relationship itself needs to be the focus of study so that the
that prevent nurses from providing effective QOL care, and
method by which nurses complete assessments within the
the need for specific interventions to improve patients' QOL.
context of relationships can be documented and translated
The data from these focus group discussions provided new
into practice guidelines. Studying purposefully altered con-
information and a conceptual model that may be critical to
texts of relationships (e.g., patients have stable disease, are
advancing QOL as a valuable concept and treatment out-
cured of disease, have recurrent disease, are at end of life, or
come in the clinical setting. By exploring how nurses define
differ culturally from nurses) also would yield valuable in-
and perceive patients' QOL and how nurses intervene to im-
sights into clinically relevant patient- and disease-specific
prove patients' QOL, QOL may be moved to the forefront of
QOL assessments. Altering available measures to be more
clinical practice, which ultimately may result in better pa-
clinically useful while maintaining their psychometric
tient care.
strengths should be considered.
Additional research implications can be deduced from the
nurses' relationship-based model. For example, the model
Author Contact: Cynthia R. King, PhD, NP, RN, FAAN, can be
contains a variable (i.e., environmental characteristics) that
reached at crking@maknaus.com, with copy to editor at rose
has been relatively unexplored in QOL research. The impact
_mary@earthlink.net.
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