Adult sickle cell diseased patients' knowledge and attitude toward the preventive measures of sickle cell disease crisis

International Journal of Nursing and Midwifery Vol. 1(2) pp. 010-018, November,, 2009
Available online http://www.academicjournals.org/ijnm
©2009 Academic Journals




Review

Adult sickle cell diseased patients’ knowledge and
attitude toward the preventive measures of sickle cell
disease crisis

Dihya Ebrahim Jaffer*, Fatima Khairallh Amrallah, Khadija Mohammed Ali, Nafeesa Abdulla
Mohammed, Ridha Abdulla Hasan and Zainab Mahdi Humood

Ministry of Health Intensive Care Unit (Ward 205), P.O. BOX 12, Salmaniya Medical Complex, Kingdom of Bahrain.

Accepted 9 June, 2009

Sickle cell crisis is preventable most of the times. However, in Bahrain sickling crisis is the most
complained and cause of hospital admission. No data is available regarding the extent of knowledge
and attitudes towards the sickling crisis’s preventive measures the adult Bahraini sickle cell patients
have. The purpose of this paper is to explore the extent of knowledge and attitude of Bahraini adult
sickle cell patients towards the preventive measures of sickle cell crisis. The objective is to establish
baseline data and to utilize the findings in designing awareness programs that would assist the sickle
cell patients to prevent the sickling crisis. A convenient sample of 84 Bahraini adult sickle cell patients
achieved. Structured interview approach was used to assess the subjects' knowledge and attitudes
toward the preventives measures of sickle cell crisis. The results indicated that the sample was
moderately knowledgeable about the sickling preventive measures (Mean of Knowledge score = 55%)
and moderately compliant (Mean of Attitudes score = 63%). The subjects' knowledge (about the
preventive measures) was found to be moderately and positively correlated (r = 0.57, r2 = 0.32, p =
0.000) with their attitudes toward crisis prevention. Designing awareness programs regarding the
preventive measures of sickle cell crisis is an evident need for these patients.

Key words: Sickle cel disease (SCD), sickle cel trait (SCT), sickle cel disease crisis, sickling crisis, Vaso-
occlusion crisis (VOC), knowledge, attitude, preventive measures of crisis.


INTRODUCTION

Sickle cel disease (SCD) is an autosomal recessive
Arabia and Mediterranean countries (Turkey, Italy,
disorder in which abnormal hemoglobin leads to chronic
Greece) (World Health Organization, 2006).
hemolytic anemia with numerous clinical consequences
According to Bahrain Health Statistic 2004 - 2005, the
(Papadakis et al., 2006). It considered as one of the most
first reason of admission to Salmaniya Medical Complex
prevalent hereditary hematological disease worldwide
SMC was found to be cause by SCD. The number of
(Lourerio and Rozenfeld, 2005).
hospital admission due to SCD gradual y increased with
Worldwide, about 300 000 children are born with sickle
2600 patients admitted during 2005, which accounted for
cel disease every year (Okpala et al., 2002). It is found in
6.5% of the total admission to SMC.
many parts of the world, particularly in people whose
A key issue in managing sickle cel disease patients is
ancestors come from sub-saharan Africa, India, Saudi
the early identification of high risk subjects for poor

outcome, in order to initiate treatment prior to the

development of debilitating organ damage (Schnog et al.,

2004). The objective of this article is to evaluate the
*Corresponding author. Email: dhiya99@hotmail.com. Tel:
extent of SCD patient's knowledge and attitude toward
+97339880921.

prevention of sickle cel crisis that may help concerned
Abbreviations: SMC, Salmaniya Medical Complex; SCD,
health professionals in designing educational programs
Sickle cel disease; SCT, Sickle cel trait; VOC, Vaso-oclusion
which emphasize in dissemination of sickling crisis
crisis.
preventative measure

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Jaffer et al. 011






Ethical consideration
the SCD crisis consequences might be preventable if the

SCD patients become adherent to the preventive mea-
The research committee (SMC, Ministry of Health) and
sures of SCD crisis.
the nursing administration of SMC approved the study
In 2005, Salmaniya Medical Complex (SMC) recorded
and they send the approval letter to the concerning
that adult patients ( 15 years) with principal diagnosis of
wards. The researchers maintained the anonymity and
sickle cel disease have the highest number of discharge
confidentiality of the participants after informed consent
(n = 2555), days of care (n = 9255) and average length of
obtained.
stay (x = 4.6 days) compared to any other disorders.

In year 2007, the average number of sickle cel patients

admitted with crisis was 232 monthly. These patients
Problem statement
required 1153 days of hospital care with 5 days length of

stay on average each month (Admission Office SMC,
What is the extent of adult sickle cel diseased patients'
2007).
knowledge and attitude toward the preventive measures

of sickle cel disease crisis?


Literature review


Purpose
No study was found investigating the knowledge and

attitude of sickle cel patients toward the preventive
To evaluate the extent of sickle cel diseased patients'
measures of sickling crisis. However, few studies investi-
knowledge and attitude toward prevention of sickle cel
gated the sickle cel patients’ general knowledge about
crisis.
their disease.

Research Reports Al-Nasir and Niazi (1997), regarding

the general knowledge of 118 SCD patients and found:
Objectives
38% had little knowledge about SCD, 32% had moderate

knowledge and 30% had high degree of knowledge.
1. To help the concerned health care professionals in
The author also recommended that: first, mild SCD
designing educational programs which aim to increase
crisis can be managed in the primary health care clinic or
the sickle cel patients' awareness and enhance their
at home if the patient is given adequate education about
attitude toward the preventive measures of sickle cel
their disease. Second, there is need for a strong health
disease crisis.
education campaign about SCD in Bahrain.
2. To assist sickle cel patients (through community
A study done among African American students about
based organizations) to participate in awareness pro-
awareness of SCD by Ogamdi (1994), found that the
grams concerning crisis prevention.
subjects were not aware of the basic facts about sickle
3. To suggest recommendations that focus on the
cel disease.
involvement of public and health sectors (health centers,
As mentioned in a study done by Al-Arrayed (1994), on
schools, associations, etc…) those wil emphasize on
school age students’ about factors participating in SCD
dissemination of sickling crisis preventive measures.
crisis founds that cold is 45%, fever is 35%, exhaustion is

35%, temp change is 19%, hot weather is 10%, crowd is

10%, psychological tension is 10%, vomiting and diarrhea
Benefit of study
is 7% and traveling by air is 1%.

According to literature, 11 areas were identified as
To overcome the deficiencies of patient’s knowledge and
domains that contribute to preventive measures of SCD
attitude regarding preventive measures of SCD crisis,
crisis.
which may help to reduce morbidity and mortality rate.
These domains are general precaution, exercise, food,
Ultimately, achieving these goals wil help to reduce the
rest, travel, places, weather, medication, emotional,
total cost of Ministry of Health (MOH) budget.
social, spiritual and coexisting medical condition. It's

mean if participants have any other hereditary diseases

that may aggravate sickle cel crisis (e.g. thalasemia,
Importance of the study
G6PD reduced activity or other condition like pregnancy).


From our work experience in taking care of SCD patients

in adult intensive care unit (ICU), we observed that these
General precautions
patients are at high risk of developing severe compli-

cations of sickle disease crisis, which are for example:
This domain encompasses several areas sickle cel
Cerebrovascular accident (CVA), acute chest syndrome,
patient might undertake to limit the crisis occurrence.
septic shock and eventual y multi-organ failure. Obviously,
Vaccinations during childhood against Streptococcus

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012 Int. J. Nurs. Midwifery







pneumonia, Haemophilia influenzae and penicil in pro-
Weather
phylaxis have dramatical y reduced infection related

mortality in SCD patients (Schnog, 2004). Improved pre-
The impact of weather on sickle cel patient is obvious.
ventive measures such as pneumococcal vaccines for
Hot and humid weather make SCD patients loose water
infants may reduce the number and cost of sickle cel
and salt in sweat and they are prone to vaso-occlusive
related hospitalizations in the future (Onley, 1999).
crisis (Al- Arayyed et al., 2007).
Frequent and comprehensive medical examination

should be guided by ongoing consultation with hemato-

logists specializing in sickle cel disease. Eye exami-
Medication
nation from age of 10 years is necessary as wel

(National Institute of Health, 2002). Cigarette smoke, both
Only hydroxyurea has been proven to reduce the
active and passive smoking can damage the lungs and
incidence of painful crisis and it safe and effective in
lower oxygen levels in the blood for children and adults
preventing complications (Schnog, 2004). World Health
who have sickle cel disease (WebMd, 2005). In addition,
Organization (2006) added that treatment with hydro-
a link between cigarette smoking and "acute chest
xyurea has reduced many of the major complications.
syndrome" in sickle cel anemia is suggested (Young,

1992).


Psychological status


Rest and activity
Psychological and emotional status can largely influence

sickle cel patient health. Painful crisis are preceded by
Keeping balance between activity and rest is crucial for
increases in severe stressors 2 days prior to onset.
sickle cel patients. Low impact exercise like leg left and
Patients with SCD have reported social problems include-
light weights may be useful and safe for maintaining
ing employment, finance, childcare and spare-time
strength particularly in the legs and hip but patients
activities. Results showed that patients who were able to
should consult their doctor about any exercises program.
maintain positive affect were less likely to use health care
(WebMd, 2005).
services despite experiencing pain (Porter et al., 2000).
In a randomized control ed trial conducted by
A report from Mayo clinic USA in (2007), emphasized
Meremikwu (2006), it was found that moderate exercise
that stress can be reduced and avoided by praying,
is general y accepted to be beneficial, especial y in
seeking help from family and friends. Having a positive
reducing the risk of cardiovascular disease. Moderate
attitude, creating a supportive environment and develop
exercise is therefore unlikely to cause harm in people
coping skil s to help to deal with the disease. Strong
with sickle cel disease. Strenuous exercise is suspected
family relationships and close personal friends can be
to lead to factors that may precipitate sickle cel crisis,
helpful. A support group might help to cope with the
such as low tissue oxygen saturation, dehydration and
disease (American Academy of Family Physicians, 2002).
stress. People who have this disease should try to avoid

activities that reduce the amount of oxygen in their blood.


Coexisting conditions


Diet
Painful crisis occur with increased frequency in pregnant


women (Schong, 2004). In pregnant women, the crises
Consuming nutritious food is helpful in sickling crisis
were precipitated by urinary tract infection, respiratory
prevention. In a study viewed SCD opinion regarding
tract infection, sore throat and septicemia (Al Mulhim,
triggering factors of sickle cel crisis, almost 55% of the
2000).
subject mentioned beans including broad beans as the

participating cause. An improvement in the patient's

condition was noted with increased fluids, fruits, vege-
Theoretical framework
tables and milk consumption (Al-Arrayed, 1994).


Operational definition of:


Places and traveling
Knowledge


Presenting in certain places would trigger the sickling
The information that SCD patient have about the preven-
crisis as wel . Flying in an unpressurized airplane can
tive measures of SCD crisis, it is measured in percent
cause cel s to sickle (WebMd, 2005). Anything that
from 0 - 100%, 0 means patient don’t have any know-
reduces the amount of oxygen in their blood, such as
ledge regarding preventive measures of SCD crisis,
mountain climbing, flying at high altitudes without suffi-
100% means that patient have al information required to
cient oxygen may bring on a sickle cel crisis.
prevent SCD crisis.

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Jaffer et al. 013





Dem ographics

Gender




Age



Marit al status
Knowledge
No. of
Level of education
Attitude

Admission
Occupation
Econ omic status







Figure 1. Theoretical framework.



Attitude
study.

2. Population: convenient sample of approximately 100
The actions those carried out by SCD patient to prevent
subjects within the hospital, however, power analysis
SCD crisis, it is measured in percent from 0 - 100%, 0
employed to determine the actual required sample size.
means patient don’t perform any action that wil help in
3. Subjects' inclusion criteria: see the Table 1.
preventing SCD crisis, 100% means that patient perform
4. Instrument: questionnaire was used to evaluate the
al actions required to prevent SCD crisis.
subjects' knowledge and attitude toward prevention of

sickling crisis, the data col ected through structured

interview. This tool is based on literature review of
Number of admission
established questionnaires; however, the research team

has developed the vast part of it. The validity of the
Frequency of SCD patient’s admission to the SMC
questionnaire content was verified by experts opinions in
hospital per year due to SCD crisis (Figure 1).
the related field (hematology, intensive care) and final

version achieved. The reliability measured using

Research questions
Chronach Alpa after data col ection done.

5. Data analysis: the scores of knowledge and attitude
1. What is the extent of knowledge among adult sickle
domains calculated as the number of correct response
cel diseased patients about sickling crisis preventative
divided by total number of each domain questions then
measures?
this ratio expressed in percentage. After the scores of
2. What is the attitude of sickle cel diseased patients
knowledge and attitude are obtained correlational
toward sickling crisis preventive measures?
procedures used to explore the relationship between
3. Is there a relationship between patients' Knowledge
knowledge, attitude, demographic characteristics and
regarding sickling crisis preventive measures and their
frequency of admission due to crisis.
demographic characteristics?

4. Is there relationship between patient attitude toward

sickling crisis preventive measures and demographic
Data analysis
characteristics?

5. Is there relationship between patient knowledge and
Instrument validity
attitude toward preventive measures?

6. Is there a relationship between the patient’s attitude
The instrument validity (construct and content) was
toward SCD crisis prevention and frequency of admission
established by specialists in the relevant field for the
due to SCD crisis?
knowledge and attitude scales.




Study design
Instrument reliability


1. Design type: quantitative, descriptive and correlational
A pilot study performed recruiting 33 subjects revealed

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014 Int. J. Nurs. Midwifery



Table 1. Subject inclusion criteria.

Disease status:
Diseased
Age
15 years
Gender
Any
Education level
Any
Occupation
Any
Level of activity
Any
History of crises
Any
Family history
Any
Setting
In-hospital



Table 2. Details of subjects' demographic characteristics.

Demographic variable

n
%
Gender
Male
40
49

Female
42
51
Marital status
Single
50
59.5

Married
33
39.3

Widower/Widow
1
1.2
Level of education
Il iterate
3
3.6

Up to high school
52
62.7

University
28
33.7
Occupation
Student
27
32.5

Unemployed
26
31.3

Employed
29
34.9

Retired
1
1.2
Economic status
Less than 200 BD
13
15.5

200 - 500 BD
61
72.6

More than 500 BD
10
11.9
Age
Mean
St. Dev.
Minimum
Maximum
Range
27
9.2
15
59
44



reliable knowledge scale as Cronbach Alpha = 0.74 and
tween the correctly answered questions and the total
Attitude scale with Cronbach Alpha = 0.72
asked questions. The sample was found to be mode-

rately knowledgeable about the preventive measures of

sickling crisis as their mean knowledge score was
RESULTS
(55.3%) (Table 3).

Demography
This mean knowledge score was explained by the high

percentage of subjects who incorrectly answered nearly
The sample consisted of 84 Bahraini adult sickle cel
half of knowledge scale questions (Table 4).
diseased patients of which male (49%) and female
Cluster analysis employed to reveal any natural groups
(51%). The majority of the sample was single (60%), up
that might exists based on the subjects Knowledge
to high school education (63%) and earns monthly
Score. K-Mean cluster analysis was able to segregates 3
between 200 to 500 BD (73%). Table 2 lists the demo-
clusters (groups) who were significantly different in their
graphic characteristics in details:
means of Knowledge Score. One-way Analysis of

Variance (ANOVA) was used to confirm the significant

difference between groups' means. The analysis showed
Research question 1 result
that each group mean was significantly different from each

other as (F(2, 81) = 120.5, p = 0.000). Group member-
The extent of knowledge was estimated as the ratio be-
ship exerts large effect size on the Knowledge Score as

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Jaffer et al. 015



Table 3. Descriptive statistics for subjects' knowledge score.

Statistics on sample Knowledge Score
Mean
St. Dev. Minimum Maximum
Range
CI 99%
55.3
12
20
85
65
51.8 - 58.7



Table 4. The nine questions to which most subjects incorrectly answered.

Question
Domain
n
%
1. Which of the fol owing vaccine wil help to prevent the General
78
92.9
sickling crisis?
precautions
2. It is important to have nutritious meals rich in protein Food
78
92.9
because:
3. Which of the fol owing precautions might be helpful to General
69
82.1
prevent the long-term complications of SCD?
precautions
4. While traveling in airplane the fol owing factors might Travel
68
81
contribute to SCD crisis:
5. Which of the fol owing food is rich source of iron?
Food
60
71.4
6. Which of the fol owing wil trigger SCD crisis?
General
58
69
precautions
7. Which of the fol owing places should be avoided by SCD Places
58
69
patients:
8. It is advisable for SCD patient to attend al the fol owing Social
43
51.2
social activities, except:
activities
9. It is not advisable for SCD patient to be in highly crowded Places
42
50
places because:



Table 5. Statistics on Knowledge score for each group.

Cluster
Mean
St.Dev.
Minimum Maximum
Range
CI 95%
Poorly
Knowledgeable
35.5
8.5
20
43.8
23.8
29.8 - 41.3
Moderately
Knowledgeable
53.8
5.5
45
61
16
52.3 - 55.3
Highly
Knowledgeable
70.8
5.9
63
85
21
68 - 73.6



Score as Eta Squared was = 0.74.
entire sample. Their mean Knowledge Score is 70.8%.
The first group size was 11 cases (13% of sample) with
Like the second group, no unique demographic charac-
mean Knowledge Score of 35.5%. The only demographic
teristic was isolated. This group labeled as "Highly
characteristic that made this group unique was that up to
Knowledgeable Group" (Table 5).
high school education subjects were significantly more

than university educated counterparts (chi = 6.16, DF =

1, p = 0.013). We would label this group as "Poorly
Research question 2 result
Knowledgeable Group".

The second group was the majority of the subjects. The
The extent of compliance was estimated as the ratio
size was 54 cases (64.2%) with mean Knowledge score
between the reported compliant attitude and the total
of 53.8%. No unique demographic characteristic was
asked questions. The sample was found to be mode-
isolated for this group. This group labeled as "Moderately
rately compliant with the preventive measures of sickling
Knowledgeable Group".
crisis as their mean attitude score was (64%) (Table 6).
The third group was 19 cases making 22.6% of the
Cluster analysis employed to reveal any natural groups

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016 Int. J. Nurs. Midwifery



Table 6. Statistics on the Attitude score.

Statistics on sample Attitude Score
Mean
St. Dev. Minimum Maximum
Range
CI 99%
64
13
27
94.2
67.2
60.2 - 67.7



Table 7. Statistics on Attitude score for each group.

Cluster
Mean St. Dev. Minimum Maximum
Range
CI 95%
Poorly Complaint
43
8.3
27
51
24
38 - 48
Moderately Complaint
62
5
53
70
17
60.5 - 63.5
Highly Complaint
79.2
5.5
70
94
24
76.8 - 81.5



that might exists based on the subjects Attitude Score. K-
Research question 4 result
Mean cluster analysis was able to segregates 3 clusters

(groups) who were significantly different in their means of
Multifactor between-groups ANOVA performed to explore
Attitude Score. One-way Analysis of Variance (ANOVA)
the impact of age, gender, marital status, education level,
was used to confirm the significant difference between
occupation and economic status on the subjects
groups' means. The analysis showed that each group
Knowledge Score. The analysis revealed non significant
mean was significantly different from each other as (F(2,
model (F(34, 4121) = 0.945, p = 0.545). None of the
81)= 108, p = 0.000). Group membership exerted large
demographic variables showed significant Main effect or
effect size on the Attitude Score as Eta Squared was =
Interaction effect over the Knowledge score. Except for a
0.72.
subgroup in the education level, the university educated
The first group size was 13 cases (15.4% of sample)
subjects (mean ± SD, 61.2 ± 11.8) was significantly more
with mean Attitude Score of 43%. No unique demo-
knowledgeable about the preventive measures compared
graphic characteristic was isolated for this group. We
to up to high school educated counterparts (mean ± SD,
would label this group as "Poorly Compliant Group".
52.7 ± 10.9, t78 = -3.2, p = 0.002). The magnitude of the
The second group was the majority of the subjects. The
difference between the means was smal (Eta squared =
size was 47 cases (56%) with mean Attitude score of
0.012).
62%. 2 unique demographic characteristics were isolated

for this group. First, singles are significantly more than

married (chi = 4.35, DF = 1, p = 0.036). Second, up to
Research question 5 result
high school educated are significantly more than

university educated (chi = 5.10, DF = 1, p = 0.023). This
Multifactor between-groups ANOVA performed to explore
group labeled as "Moderately Compliant Group".
the impact of age, gender, marital status, education level,
The third group was 24 cases making 28.5% of the
occupation and economic status on the subjects Attitude
entire sample. Their Attitude Score was 79.2%. Like the
Score. The analysis revealed non significant model (F(34,
first group, no unique demographic characteristic was
5487) = 0.87, p = 0.653). None of the demographic
isolated for this group. This group labeled as "Highly
variables showed significant Main effect or Interaction
Compliant Group" (Table 7).
effect over the Attitude score.




Research question 6 result
Research question 3 result


Overal , no relationship was found between the Attitude
The knowledge and the attitude score were found to be
score and frequency of crisis occurrence. However, a
strongly correlated (r = 0.57, p = 0.000) in non-linear
strong relationship (r = -0.88, p = 0.000) uncovered in a
fashion. A cubic curve was best describing the rela-
sub group who had 20 to 35 crises during the last 3
tionship between them. The Attitude Score was predict-
years. The group size is smal (n = 13).These results are
table using the Knowledge Score using in the fol owing
powerful 90% as beta = 10% at alpha = 5%.
cubic equation:



AttScr = -90 + (10 x KnowScr) + (- 0.196 x KnowScr2) +
DISCUSSION

(0.001 x KnowScr3)
Our results came consistent with the studies that said

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Jaffer et al. 017






SCD patients mostly lack knowledge about their disease
7. Provide special unit capable to manage patients with
(Mean score (general knowledge) = 58%, Median =
sickle cel disease crisis
63%). Al-Nasir and Niazi (1997), found that 70% of SCD
8. Regular check-up
patients wil be having little or moderate knowledge about

their disease. Adding to that Ogamdi (1994), affirms that

“The subjects did not wel understand the basic facts
Implications for society
about sickle cel disease”. Moreover, Butler (1993), found

also that "in general, group members evidenced a poor
1. Involve the social/religious places to educate the
understanding of sickle cel disease assessed by pretest".
community about the SCD.
Integrating these findings, we found the need for
2. Involve social/religious people in the educational
educating SCD patients about their il ness is evident.
programs regularly.
A study done by Gil (1989), stated that "the acquisition
3. Donate special consideration for SCD patients as
of knowledge about a disease is important in behavior
students and employees in terms of: type of job, level of
adaptation, especial y if it is paired with believe that ones
activity, etc.
behavior wil have positive impact on health". This

statement explains the importance of knowledge to affect

attitude (behaviors and believes). Affirming our findings
Limitation
that subject’s knowledge regarding SCD preventive

measures is positively correlated with this attitude toward
The study sample size was smal so it is recommended to
it. The correlation between them was moderately strong
have a bigger sample to study the relationship between
(r = 0.57%, p = o.ooo).
demographic characteristics and Knowledge and Attitude.
SCD patients apparently share similar believes and
Also, the frequency of admission was obtained from the
misconceptions. About 99% of our sample believes that
patients themselves as it was difficult to obtain it from the
avoiding broad bean is a preventive measure to SCD
medical record. In addition, the data col ection was
crisis. Al Arrayad (1994), found also that 55% of the SCD
depending on the patient health condition as it was
patients believe that broad bean can aggravate the SCD
difficult to interview some patients who were having pain
crisis. However, no adequate evidence found regarding
especial y in the first 2 days from admission.
the relationship between broad bean consumption and

occurrence of sickling crisis.


Conclusion


Recommendation
To conclude, this study il ustrated the extent of know-

ledge and attitudes Bahraini adult sickle cel patients
The SCD crisis consequences wil be preventable if the
have regarding the preventive measures of sickling crisis.
SCD patients become adherent to the preventive mea-
The link between their knowledge and attitudes was
sures of SCD crisis.
uncovered suggesting the importance of educating these
Based on the research results we suggest implications
patients about crisis prevention.
for patient to take the responsibility of self-education
Designing awareness programs regarding the preven-
about SCD crisis prevention involve in social activities
tive measures of sickle cel crisis is an evident need for
designed for educating SCD patients, be an active
these patients. Increasing the awareness of sickle cel
member in SCD association, utilize al available
patients regarding this matter wil potential y affect their
resources effectively to reduce the incidence of SCD
attitudes toward crisis prevention, thus, the chance of
crisis.
suffering the crisis.




Implications for practice
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