Uncertainty
Uncertainty
Uncertainty among Heart Failure Patients and its Relation to their Health
Related Quality of Life
Abstract
Uncertainty was described as “The gap between what is known and what needs to be
known in order to make correct decisions”. Uncertainty has been identified as a significant
part of the experience of heart disease and yet no studies have fully explored the experience of
uncertainty in patients living with chronic heart failure. Objective: The study aimed to
explore the uncertainty in heart failure and its relation to patient’s health related quality of
life (HRQOL). Setting: The study was conducted at the Out Patient Cardiac Clinic of King
Abdul Aziz University Hospital in Jeddah. Subjects: A convenience sample of 60 heart failure
patients were enrolled for follow up, their age ranged from 55 up to 65 years. Tools: three
tools were used by the researchers to collect the necessary data: Tool I: Biosociodemogaphic
characteristics tool. Tool II: Mishel uncertainty in illness scale (MUIS-C). Tool III: Health
related quality of life measures (HRQOL) was used to examine disease specific HRQOL.
Results: A high level of uncertainty was found in 34 (57%) heart failure patients. The mean
score of heart failure patient's uncertainty was 71+3.1, while the mean score among patients
with high and low uncertainty were 75+4.56 & 64.5+2.88 respectively with no significant
difference. In relation to HRQOL, the overall mean score of patients was 22.3+1.7. On the
contrary, the mean score of patient's HRQOL with high uncertainty was 20.66+2.12, while
the mean score of patient's HRQOL with low uncertainty was 23.63+3.61. The study clearly
showed highly significant impact of uncertainty (according to F-test, p<0.01, p<0.05) on
HRQOL concerning physical functioning, emotional and general health between patient’s
with low and high uncertainty. Low uncertainty patients had better quality of life concerning
physical functioning, emotional and general health. Conclusion: The majority of heart failure
patients had a high uncertainty level, which affect patient's quality of life negatively.
Recommendations: It is recommended to consider the heart failure patient's uncertainty level
and its negative effect on patient’s quality of life as basic aspect of patient's management.
Consequently the cardiac patient's health condition will be improved without further cardiac
complications and repeated attacks of heart failure problems.
Keywords: Heart failure, uncertainty, health related quality of life (HRQOL).
failure experience high morbidity and life and insidious onset, this uncertainty was
limiting illness while suffering from related to the life-threatening nature of
substantial physical and psychosocial cardiac problems and raised fear of
burdens. There is a large unmet care needs invalidism continuing damage to the heart,
for adults with chronic heart failure(3-5). and death. Cardiovascular patients were also
found to perceive uncertainty about the
Uncertainty has been identified as a
significant part of the experience of heart effectiveness of treatment related to their
inability to clearly connect the treatment to
disease and yet no studies have fully
explored the experience of uncertainty in specific outcomes(16). There is sufficient
evidence that uncertainty has a negative
patients living with chronic heart failure(6,7).
impact on quality of life and psychosocial
Uncertainty was experienced during the
time of initial diagnosis of heart disease, adjustment in chronic illness. Patients with
heart failure have difficulty in discerning
with recurrence of symptoms, when
treatment decisions were being made, and pertinent symptoms, endure frequent
hospitalizations, and have self care needs
when adjustments in therapies were needed.
that require diligent self-monitoring and
Uncertainty is inherent in the human multiple medications to maintain an
experience but is even more silent when one acceptable quality of life (QOL)(17, 18).
is presented with a life-threatening or
chronic illness(8-10). Health related quality of life
(HRQOL) reflects the functional effect of
Uncertainty in illness was first an illness and its therapy from the patient’s
proposed by Mishel(11) as a way to point of view. Poor HRQOL has been
understand adjustment to acute or chronic associated with poorer outcomes, such as
illness, it was defined as the in ability to lower survival rates, increased number of
determine the meaning of illness – related hospitalizations, decreased capacity to
events and occurs in situations where the perform activities of daily living and
decision maker is unable to assign definite decreased compliance with treatments in
values to objects and events and is unable to cardiac patients(19,20). Despite a growing
accurately predict outcomes because interest in HRQOL in cardiac patients, it has
sufficient cues are lacking(1). Moreover received little attention in heart failure.
uncertainty was described as “The gap Although evidence indicates that illness-
between what is known and what needs to related uncertainty is an important concern
be known in order to make correct in heart failure patients, the relationship
decisions”. In addition uncertainty events between uncertainty and other
are characterized as ambiguous, vague, psychological disturbances and to overall
unpredictable, unclear, and lacking HRQOL has not been investigated(21-23).
information which limits the patient’s
The sources of uncertainty in heart
ability to choose coping process.
Uncertainty provide useful information that failure are primarily related to the changing
or ambiguous symptom pattern, changes in
can be utilized by health care professionals
to plan and implement educational and treatment and concern regarding the quality
supportive programs and provide counseling of life. Patients with heart failure experience
periods of stability and exacerbations. The
that meets the specific needs of these
patient(12-15). difficulty lies in distinguishing progression
of symptomatology from what occurs with
Uncertainty explains how patients some consistency or secondary to duration
construct meaning related to their illness of disease(24-26).
utilizing cognitive processes. The symptom
The significance of this research for
pattern in heart failure provokes uncertainty
because of the ambiguity in presentation the nursing profession is that the findings
will provide a better understanding of
(with10 items) and general health (with10 Sampling was started and completed
items). The sub items included: questions within 5 months.
about health such as; does your health now Purpose of the study was
limit your activities? How much of the time
explained to the patients who
has your health interfered with your social agreed to participate in the study
activities?.
prior to data collection.
The scale score ranged from 0-30, the
The researchers started to collect
higher score indicated a higher quality of the data from the patient after follow
life. The cronbach coefficient was 0.94(6).
up visit in the outpatient clinic.
The data was collected using Arabic
version. - Data were collected over a period of
five months from October 2011 –
February 2012.
Method
- An official permission was obtained
Ethical considerations:
from the managers and authorities of
the Out Patient Cardiac Clinic, after - All patients were informed about the
explanation of the nature and study purpose and their rights to
objectives of the study. decide whether or not to participate in
the study. Then a written informed
- The questionnaire was developed by
consent was obtained from each
the researcher and translated into
patient who agreed to participate in
Arabic by the researchers and the
the study.
content validity of the questionnaire
was tested by a panel of five - Privacy and confidentiality of the
academic nursing staff experts in the collected data was assured.
study field. The needed modifications
of some Arabic words were done.
Statistical Analysis
Contents of the tools were tested
regarding to the knowledge accuracy, After completion of data collection, the
relevance and competence. In data were entered into statistical package for
addition, content validity was done social science (SPSS) software package
also for the proposed protocol to test version 18.0. Data were presented using
its consistency, accuracy, descriptive statistics, t test and analysis of
applicability, relevance and feasibility variance (ANOVA) test was used. Pearson
correlation analysis was used to identify the
- The reliability of the MUIS-C &
inter-relationships between variables.
HRQOL were tested using
Finally, analysis and interpretation of data
Cronbach’s alpha, the values were
were conducted.
0.85 and 0.70 respectively.
- Pilot study was carried out on six
patients, those patients were not Results
included in the sample, to ascertain Table (1) shows that the majority of
the clarity and the applicability of the patients 42% were in age group 60 < 65
tools. Modifications in the wording of years old. As regard patient's sex 58% were
the colloquial Arabic were done males. About 67% of patients were married.
based on the findings of this pilot In relation to level of education 33% were
study. university graduates and 17% were
- Procedure: illiterate, on the other hand 58% had high
school education and 42 had less than high
school education. Furthermore 38% of
patients were previously admitted in the uncertainty were 77+7.9, while only 8% of
hospital with heart failure and had a history patients were diagnosed as heart failure
of angina or chest discomfort. About 33% patients three to four years ago with mean
and 25% were hypertensive and diabetic score of HRQOL 23+2.37 and mean score
respectively. were 54+3.1, moreover there was a
statistical significant difference of mean
Table (2) represented
biosociodemographic characteristics in scores of HRQOL and level of uncertainty
in relation to time since the diagnosis of
relation to level of uncertainty; it was found
that 34 (57%) of heart failure patients had heart failure. It was obvious that the more
the time elapse since diagnosis of heart
high level of uncertainty. The lowest mean
failure, the better the HRQOL and
of low level of uncertainty was 60+4.3
were among age group 55 < 60 , while the uncertainty among heart failure patients.
mean of low level and high level of Table (5) illustrates that the mean score
uncertainty among heart failure male of HRQOL among low and high groups of
patients were 51.75+11.58 & 71+3.1 uncertainty were 25 + 3.9 and 20 + 3.7
respectively. As regards educational level, respectively. The study clearly showed
there were statistical significance difference highly significant impact of uncertainty on
between patients with low and high level of HRQOL concerning physical functioning,
uncertainty among heart failure patients emotional and general health between
were educational level less than high school patient’s with low and high uncertainty
education 61+4.1 and 74+0.54 respectively. (according to f-test, p= 0.001, p= 0.000, p=
As regards hypertensive patients, there was 0.017 respectively). It was found that low
a statistical significant difference between uncertainty patients had better quality of life
patients with low and high level of concerning physical functioning, emotional
uncertainty 54+3.2 and 70+0.55 and general health.
respectively. Table (6) shows the means of items for
Table (3) points out that all heart failure each factor. It indicates that uncertainties
patients had high uncertainty level with related to unpredictability 3.25 and
mean score 71+3.1, while the majority of ambiguity in the situation 2.43 were highest,
patients 56% with high mean score while the lowest uncertainties were
uncertainty 75+4.56 and 43% of patients inconsistency, however the results presented
with low level of uncertainty 64.5+2.88 that ambiguity concerns indistinctive of the
with significant difference between low and unclear or ever changing bodily cues about
high level of uncertainty groups . In relation the state of illness that may be confused and
to health related quality of life (HRQOL) tend to blur and overlap with other illness
the mean score of heart failure patients was concerns. Also the lack of contingency
22.3+1.7, on the contrary the mean score of between illness and treatment cues and
patient's HRQOL with high uncertainty was illness outcome (unpredictability) are the
20.66+2.12, while the mean score of main cause of high uncertainty among heart
patient's HRQOL with low uncertainty was failure patients.
23.63+3.61. Also it was apparent that there Table (7) pointed out that uncertainty
was an inverse relation between HRQOL
(MUIS.C) the correlations were significant
and uncertainty, when uncertainty level at p < 0.05 and p < 0.01for 12 of the 23
increased patients’ HRQOL became worse,
items, however it revealed that these 12
and vice versa. items represent the uncertainty among heart
Table (4) shows that 30 % of patients failure patients.
were diagnosed as heart failure patients less
Table (8) illustrates the correlations of
than six months with mean score of heart failure patients’ quality of life scores
HRQOL 20+1.41 and mean score of
of physical functioning, social role with life. Living with uncertainty, change,
functioning, emotional role and general conflict and tremendous personal and
health, it revealed that physical functioning medical issues, also it meant moving
had weak positive significant correlations between periods of certainty and
with general health (r=0.33), social role uncertainty(20).
functioning (r=37) and emotional role
Uncertainty was experienced when
(r=0.38). Moreover, the results indicate that information was lacking or usual care failed
the emotional role had a strong positive
and as a result individuals fluctuated
significant correlation with social role between feeling in control and feeling out of
functioning (r=0.86).
control. No studies have been found which
Table (9) illustrates the correlation of examine the relationship between
heart failure patients’ uncertainty scores of uncertainty and quality of life in heart
ambiguity, complexity, inconsistency and failure patients, however this study was
unpredictability. It revealed that ambiguity done looking at relation between
had a strong positive significant correlations uncertainty and health related quality of life
with inconsistency (r=87), it means that among heart failure patients(22).
patients’ uncertainties related to ambiguity The results of present study revealed
is a causative factor for high uncertainty
that the majority of heart failure patients age
among heart failure patients. were sixty years old and more, this may be
Table (10) presents the correlation of attributed to the increased prevalence of
HRQOL and uncertainty factors, it was heart failure in patients over sixty years of
found that HRQOL had a strong positive age, this is in live with American heart
significant correlations with ambiguity association reports that heart failure is the
(r=0.28), secondary inconsistency (r=0.26). most common admission diagnosis in the
It means that uncertainties related to United States for patients over sixty years of
ambiguity and inconsistency had a negative age. Moreover it was found that more than
effect on patients’ quality of life. half of heart failure patients were those with
high school education, this is in line with
Christopher and Cynthia(27,28) who stated
Discussion that, more than half of patients living with
Uncertainty may be appraised as a severe heart failure finished high school
threat related to an individual’s in ability to education. From the present study it was
determine what is at stake. Alternatively, found that one third of patients was
uncertainty may be appraised as an hypertensive while only one quarter was
opportunity, allowing the individual to diabetic. In this respect Christopher and
formulate positive interpretations of the Cynthia(29) found that only twenty one of
meaning of an event; it may have a positive patients living with severe heart failure
influence on patients and may facilitate complained of diabetes and hypertension.
hope that patients’ illness is not severe as Concerning the relation of patient’s
feared. The concept of quality of life is an biosociodemographic characteristics to
adaptational outcome of particular interest uncertainty, the study presented that more
with cardiac patients(22). A number of than half of heart failure patients had low
authors have attempted to delineate the uncertainty (score > 69) while less than half
components that should be included in the of the patients had high uncertainty (score
description and measurement of quality of >69).
life for cardiac patients. Quality of life was
This can be attributed to the fact that,
identified in terms of functional capacity, heart failure patients attend the outpatient
symptoms and their consequences,
cardiac clinic on regular time and they are
perceptions of health status and satisfaction provided with individualized patient
counseling. This is supported by JO-ann(30) by the ability of the patient to retain and
who stated that it is possible that counseling search about information related to their
would have facilitated the reduction of disease. In addition, patients with previous
uncertainty. Moreover the study results heart failure hospital admission had low
were confirmed by Ahadi B. et al(31) who uncertainty with no significant relation
mentioned that heart disease patient’s between high and low uncertainty as well as
uncertainty is increased when insufficient significant relation regarding heart failure
information about the symptoms and the patients complaining of diabetes, this is
disease control are provided and they think supported by Qiu, et al(32) who stated that
that their symptoms may worsen. Also their patients may feel that the health care system
results showed that, there was a positive will provide the necessary care in the future,
relationship between uncertainty and should they need it.
increased score of depression in cardiac
It was evident from the results of the
patients which lead to imbalance in the study that heart failure patients’ health
activity of the sympathetic and
related quality of life was affected by
parasympathetic systems, increased heart uncertainty, and high uncertainty in
rate and blood pressure, and stimulated
particular is significantly related to changes
muscles ability of the heart to increase and in patients’ thoughts and behaviors that
cause disturbance in heart rhythm and heart
evolved over time in response to changes in
will follow it. their heart. This in contrast with Eastwood(6)
The study showed that the age group who reported that, uncertainty can be
55<60 had low uncertainty while the age viewed as either danger or opportunity,
group50<55had high uncertainty this result when positive inferences are made,
may be related to the fewer responsibilities uncertainty perceived as an opportunity.
and obligations in the former age group. Conversely perceptions of danger arise
This finding agrees with JO-ann(30) who when negative inferences are made;
explained that the low level of uncertainty uncertainty therefore triggers a new
may be related to the older adults who may perspective on life and influence health
have reached the developmental stage related quality of life.
where they believe they have completed the The findings of the present study have
major part of their life work and have lived shown that patients with six months to less
their lives well.
than one year time since diagnosis of heart
The present study showed that single failure had a significant decrease in
and male patients had higher uncertainty HRQOL with increased uncertainty. This
than married which may be related to may be due to instability of patient health
loneliness and increased responsibilities. condition during this period with increased
This is supported by Winter(9) who stated ability to recognize and respond to
that, social support was particularly symptoms, and being changed from
important during times of illness thinking about their disease most of the time
exacerbation, when activity of daily living during diagnosis, treatment, and periods of
were disturbed, and when making and exacerbation, to rarely thinking about it
carrying out treatment decisions, patients during times of stability. These findings are
recognized the significant role family in accordance with several studies(20-24) that
members played in providing support. mentioned uncertain times challenged
The study revealed that there was a patients’ ability to put thoughts of their
heart disease in the background(21).
significant relation between low and high
uncertainty in relation to less than high Uncertainty was experienced during the
time of initial diagnosis of heart disease,
school education, patients had low
uncertainty actually, this could be explained with recurrence of symptoms, when
treatment decisions were being made, and person more vulnerable because it limits
when adjustments with therapies were coping processes and sense of control.
needed. The study revealed that emotional role
The current findings also presented had a strong positive significant correlation
that high uncertainty had adverse effect on with social role functioning in patients’
health related quality of life (Mean+SD= quality of life. Also the findings from the
20+3.7), with poor HRQOL subscale study revealed that a significant positive
emotional role general health, physical relationship existed between uncertainty and
functioning and social role finding, where HRQOL. These findings are supported by
all mean scores were lower than the mean Jo-ann(30) who stated that cardiac disease
scores of HRQOL subscale of low affects patients socially, physically and
uncertainty patients with a significant psychologically that is in terms of HRQOL.
relation to all except social role To regain the integrity of the self, a patient
functioning(3). Our findings provide relative must reduce uncertainty.
contribution of patients’ emotional, general
health, physical and social subscale to Conclusion
HRQOL in heart failure patients in relation
to uncertainty level, thus heart failure Based on the findings of the present
patient is likely to experience marked study, it can be concluded that the majority
reductions in aspects of HRQOL if he has of heart failure patients had a high
higher levels of uncertainty. This results are uncertainty level, which affect patient's
in line with Eastood (6) who reported that quality of life negatively.
uncertainty about the illness is the greatest
psychological stress for patients with life
Recommendations
threatening illness, also stated that
uncertainty spreads into many areas of a Based on the findings of the present
person’s life, dismantles the meaning of study, it is recommended that:
everyday events, and because the stimulus - It is important to consider the heart
for disorder. failure patient's uncertainty level and
This study has identified ambiguity as its negative effect on patient’s quality
a primary construct of the illness of life as basic aspect of patient's
uncertainty experienced by heart failure management. Consequently the
patients, it means that patients’ responses to cardiac patient's health condition will
ambiguity such as limiting investment of be improved without further cardiac
energy in the future activities, acting only complications and repeated attacks of
on information they perceive as important heart failure problems.
and favoring nonthreatening explanations of - Further researches to construct and
symptoms could lead to suboptimal develop effective nursing
outcomes. These results are supported by interventions result in decreased
Falk(20) who stated that ambiguity uncertainty, improved quality of life,
intensifies the illness situation and makes a and deferral of active treatment until
needed.
- Hypertension 20 33
Sex
51.75 11.5 71 3.1 0.92 0.215
Male 59 4.3 70 3.2 1.49 0.163
Female
Marital status
58 4 73.4 4.1 1.18 0.242
Single
Married 56 3.9 72 3.9 2.23 0.26
Educational level
Less than high 61 4.1 74 0.54 1.9 0.05*
school education
** indicates p<0.01
* indicates p<0.05
Table (3): Distribution of Studied Patients’ Scores in Health Related Quality of Life and
Uncertainty.
* indicates p<0.05
Table (4): The Relationship between Time since Diagnosis of Heart Failure, Health
Related Quality Of Life and Uncertainty.
Table (5): Mean score and Standard Deviation of Heart Failure Patients, Health Related
Quality of life with low And High Uncertainty.
Low High
Uncertainty Uncertainty
Health related measures F-test P-Value
26 (43%) 34(57%)
Mean SD Mean SD
- HRQOL 25.3 3.9 20 3.7 3.114 0.078
- Physical Functioning 23 2.5 21 1.88 7.068 0.001*
- Social Role Functioning 25.21 4.1 22 3.6 03.108 0.088
- Emotional Role 22 2.3 19 03.24 2.224 0.000**
- General Health 24 4.3 20 8.52 05.73 0.0172*
** indicates Significant Fisher FP<0.01;
* indicates Significant Fisher FP <0.0
Table (8): Correlations of Health Related Measures of Heart Failure Patients’ Quality of
Life Sub Scale.
Table (10): Correlations of Health Related Quality Of Life and Uncertainty Factors
among studied Sample.
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