Running Head: COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Parent-Child Communication and Self-Efficacy Among Families of Children with Sickle Cell
Disease
Candace Criswell-Moore
Thesis completed in partial fulfillment of the requirements of the Honors Program in
Psychological Sciences under the direction of Dr. Chase L. Lesane-Brown
Vanderbilt University
April 2014
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
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Abstract
This study examined how parent factors (education and income), child factors (age and sickle
cell disease severity), and parent and child self-efficacy ratings related to parent-child
communication and Sickle Cell Disease (SCD). In this cross-sectional study, 10 Black
adolescents (ages 10 to 17 years) with SCD and one of their parents each completed a battery of
measures related to SCD pain, communication, and self-efficacy. The results suggest that family
income and parent education are associated with child-rated parent-child communication, and
parent-rated parent-child communication is associated with parent self-efficacy ratings.
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Sickle cell disease refers to a group of autosomal recessive genetic disorders that are
chronic in nature and caused by a mutation in the hemoglobin ß-globin chain (Center for Disease
Control and Prevention [CDC], 2014; Minniti, Lu, & Groninger, 2013; Musumadi, Westerdale,
& Appleby, 2012). Sickle cell disease affects 1 in every 500 African-American live births and
can be debilitating, as well as result in pain and organ damage across the lifespan (CDC, 2014;
National Institute of Health [NIH], 2012; Olivia-Carpenter, Barach, Crosby, Valenzuela, &
Mitchell, 2011; Platt, Thorington, Brambilla, Milner, Rosse, Vichinsky, & Kinney, 1991).
Individuals with sickle cell disease are required to adhere to complex treatment regimens to help
them manage their illness, prevent pain, and thus maintain optimal health (Oliver-Carpenter et
al., 2011).
While sickle cell disease is a chronic illness, a number of acute symptoms and
complications are associated with the disease, which need to be addressed in a timely fashion to
prevent serious consequences. For instance, situations like extreme changes in weather and
dehydration may trigger an acute, painful episode called a sickle cell or pain crisis (Starr, 2012).
Children can dress warmly in cold weather and be cognizant of their diet and water intake to help
prevent such crises (CDC, 2014, NIH, 2012, Yale & Nagib, 2000). In cases where the child does
experience pain, the child must be able to communicate that he or she is in pain and explain his
or her symptoms so that the parents can address the situation quickly and with the best method
possible—give the child water if he or she is dehydrated, medicine for pain, or take the child to
the hospital if the situation is now beyond the parent’s control.
Parents and children must routinely and openly communicate about sickle cell disease.
Parents must be able to recognize signs that their child is in pain, and the child must also be able
to provide their parent with information about the location and severity of their pain, allowing
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their parents to properly respond to the situation. Such exchanges are necessary for adequate
sickle cell disease management. Through communication, a parent can determine what is wrong
with his or her child and what action must be taken. Communication is key to proper
management of a child’s sickle cell disease at home and key to preventing unnecessary
consequences.
Open communication is a free-flowing, unrestricted, [frequent] exchange of factual and
emotional information as well as the level of satisfaction and understanding produced in the
interaction (Barnes & Olson, 1982). In an article by Portenoy and Lesage (1999), open
communication about concerns and problems affecting individuals with cancer was found to be a
necessity for providing long-term support to patients who were experiencing some form of a pain
syndrome. Similar to other chronic illnesses, like cancer, to manage sickle cell disease, the
individuals with sickle cell disease and their caregiver must engage in open communication.
Some parents may not discuss the child’s disease openly or engage in conversations in
which both the child and parent feel comfortable sharing emotional information with one
another. Exchanges such as these are forms of problematic communication. Problematic
communication focuses on the hesitancy to exchange information, the negative style of
communication, and the selectivity and caution in what content is exchanged (Barnes & Olson,
1982).
It is important to learn about how parents and their children communicate about their
child’s sickle cell disease and what factors affect this communication. This may make it possible
to learn more about how families can better manage their child’s sickle cell disease. This
research will investigate how child factors (i.e. age and disease severity) and parent factors (i.e.
family income and the parent’s level of education) impact communication between a child with
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sickle cell disease and his or her parent, and how parent-child communication affects the child
and the parent’s sense of self-efficacy in terms of sickle cell disease management.
The Relationship Between Child Factors and Parent-Child Communication
Disease severity. A consensus has not been reached on how to best determine sickle cell
disease severity (Barbarin & Christian, 1999). Currently, information such as the frequency of
pain crises, the number of hospital visits within a given time period, disease genotype, and/or the
history of complications, like stroke, are used as indicators of an individual’s sickle cell disease
severity (Barbarin & Christian, 1999; Fisak, Belkin, von Lehe, & Bansal, 2010; Hurtig,
Koepke, & Park, 1989). For instance, the homozygous condition, hemoglobin SS (Hb SS) is
considered to be one of the more severe forms of sickle cell disease (Graham, 1997). Other
common genotypes include Hemoglobin SC (Hb SC) and Hemoglobin thalessemia (Hurtig et al.,
1989), as well as more rare forms of the condition (CDC, 2014). Individuals may be diagnosed
as having a severe case of sickle cell disease if they have the homozygous condition, (Hb SS),
frequently experience pain crises, are frequently hospitalized, or suffer from multiple sickle cell
disease-related complications.
Research has found that a relationship exists between disease severity and the content of
parent-child communication (Clafin & Barbarin, 1991; Clarke, Davies, Jenney, Glaser, & Eiser,
2005; Graff, Hankins, Graves, Robitaille, Roberts, Cejda, & Porter, 2012). Clafin and Barbarin
(1991) noticed a change in parent-child communication within their study that was in response to
the worsening conditions of children’s cancers. Approximately 63% of the children within the
sample were given no information about their initial prognosis. However, if their condition
worsened, their parents shared more information concerning the severity of their disorder. In
Graff et al. (2012), adolescents with sickle cell disease engaged in a focus group in which they
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talked about parent-child communication concerning sickle cell disease. The adolescents took
note of how the topics their parents discussed changed as their conditions worsened. While their
parents typically focused on discussing disease management and prevention, as their symptoms
became more severe, their parents began to focus more on discussing medical care. Research
focusing specifically on the relationship between sickle cell disease severity and parent-child
communication is lacking. However, the pattern found during the study of other chronic
illnesses, in which the topics discussed by the parents and children changed with the child’s
disease severity, may hold true with sickle cell disease. Further research in this area will need to
be done.
Child age. Research suggests that a positive correlation exists between child age and the
amount and specificity of information children are told about their condition. In terms of parentchild communication about chronic illnesses, child age may influence how much medical
information parents share with their children. In a study done by Claflin and Barbarin (1991), 43
children diagnosed with cancer were interviewed about the information that was shared with
them concerning their disease, how they cope with their illness, and how their illness impacts
their relationships with others. Children who were at least fourteen years old, were more likely to
be told about their prognosis in comparison to those younger than fourteen. Clarke et al. (2005)
found that children under the age of nine years old typically receive less information concerning
their diagnosis and treatment than children over the age of nine. In both of these studies, the
same pattern was found—the older the child, the more information they knew about their
disease.
While not all of this research addresses sickle cell disease directly, based on some of the
similarities between sickle cell disease and other chronic illnesses, one may predict that the
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relationships found in cancer studies will be similar to those found in sickle cell disease studies.
However, differences between the two chronic conditions do exist—for instance, sickle cell
disease is a lifelong condition, while cancer is diagnosed at some point during the individual’s
lifespan. Such differences result in uncertainty about how the results found in cancer studies will
relate to sickle cell studies.
The Relationship Between Parent Factors and Parent-Child Communication
The existing research suggest that socioeconomic factors such as parents’ level of
education and family income may either directly or indirectly affect parent-child communication
(Barakat, Patterson, Tarazi, & Ely, 2007; Clark et al., 1990; Ponnet, Wouters, Mortelmans,
Pasteels, De Backer, Van Leeuwen, & Van Hiel, 2013). In times of crisis, parents must be able to
assess their child’s condition, and communicate effectively with their child so that action can be
taken to help alleviate their child’s pain or prevent worsening conditions. These same assessment
and communication skills are necessary when parents make day-to-day decisions related to
helping their child manage his or her sickle cell disease.
A parent’s level of education may be related to a parent’s ability to effectively
communicate about his or her child’s illness. Clark et al. (1990) recruited children with asthma in
third, fourth, and fifth grades from 12 public New York City elementary schools, and the
children’s parents, to participate in research related to parent demographic factors and family
communication about pediatric asthma and its management. They examined the relationship
between the level of education of mothers and their involvement in the care of child asthma. This
study found that higher levels of education predicted higher levels of general involvement in the
care of the child’s asthma. This meant that women with higher levels of education were able to
more effectively interact with teachers, physicians, and their children concerning matters related
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to their child asthma. Information related to parents’ level of education and parent-child
communication about chronic illnesses is lacking. However, this study reveals potentially
relevant information by describing the effects of parent education on parent involvement in
asthma care.
Research shows that income can affect parental stress (Barakat et al., 2007), and that
forms of parental stress, like parenting stress, can impact parent-child communication (Ponnet et
al., 2013). Sickle cell disease is a well-recognized source of distress for those with the illness and
their family members (Barbarin, 1999). Research (Ponnet et al., 2013) has found that parenting
stress can influence open parent-child communication. Parents of children with sickle cell
disease are not only faced with the stress of being a parent, but the stress of being the parent of a
child with a life-threatening, chronic illness. Conditions such as a parent’s income may also
serve as a source of stress for parents. Barakat, Patterson, Tarazi, and Ely (2007) found that a
relationship exists between parent-income and disease-related parenting stress in families of
children with sickle cell disease. Their research shows that disease-related parenting stress is
higher in families with lower family-incomes. This research is relevant because it shows how
income can influence certain forms of parental stress, and how parental stress can impact parentchild communication. However, research that examines the direct relationship between income
and parent-child communication is lacking.
The Relationship Between Parent-Child Communication and Self-Efficacy
With life expectancies of individuals with sickle cell disease now extending well into
adulthood (Montalembert & Guitton, 2013; Sickle Cell Disease Association of America
[SCDAA], 2014), the development of their sense of self-efficacy in relation to disease
management is also of increasing importance. However, both research on parent-child
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communication about sickle cell disease and on how parent-child communication affects a
child’s sense of self-efficacy, are lacking.
In terms of parent-child communication and self-efficacy, there may be a relationship
between parent-child communication and self-efficacy ratings due to the fact that communication
allows the exchange of emotional information. Communication can serve as a way for parents
and children to exchange information related to sickle cell disease and proper disease
management, as well as communicate about their emotions. They can discuss the challenges they
face due to sickle cell disease and/or provide one another with support. In Bonsaksen, Lerdal,
and Fagermoen (2012) a relationship was found between social support and self-efficacy in
participants with chronic obstructive pulmonary disease (COPD). Higher rates of perceived
social support were linked to higher self-efficacy ratings among people with COPD. The use of
social support and the development of self-efficacy are considered to be central to individuals’
ability to effectively manage their own Type 1 diabetes as well (Merkel & Wright, 2012).
Having high levels of self-efficacy may be important to both the children who have sickle cell
disease, and the parent who aids in sickle cell disease management.
Self-efficacy is the belief that one can successfully carry out a behavior that is needed for
a desired outcome (Bandura, 1977). Feelings of self-efficacy may be important to an individual’s
experience with sickle cell disease because they seem to be associated with disease-related pain
and self-esteem. Additionally, feelings of self-efficacy may also be of importance to the parents’
of children with sickle cell disease because they may be related to the severity and frequency of
their experiences with parental stress. Edwards, Telfair, Cecil, and Lenoci (2001) found a
correlation between self-efficacy ratings and pain ratings. Individuals with lower self-efficacy
ratings tended to experience more severe sickle cell disease pain than individuals with higher
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self-efficacy ratings. Additionally, a higher rating of self-efficacy in individuals with sickle cell
disease was related to higher self-esteem and a higher locus of control, or the belief that one has
control over their own personal outcomes. A relationship was also found between self-efficacy
in parents of children with a chronic illness and the parents’ mental state. Low self-efficacy
among parents of children with Types 1 diabetes was related to more difficult and frequently
occurring parental stress (Streisand, Swift, Wickmark, Chen, & Holmes, 2005). Ratings of selfefficacy seem to be of importance in terms of a person’s experience with sickle cell disease
symptoms and the parents’ experience with parental stress.
Overall, sickle cell research is limited or lacking in several areas. Self-efficacy for coping
with sickle cell disease has received little attention in research (Edwards et al., 2001). Only a few
studies have even examined family functioning in families with children diagnosed with sickle
cell disease (Herzer et al., 2010). And, although sickle cell disease is comparable to other
pediatric illnesses in which ongoing monitoring and/or adherence to complex treatment regimens
is required for positive outcomes (Herzer et al., 2010), differences exist between these
conditions. In America, sickle cell disease primarily affects people of African descent. Research
that addresses family issues that are relevant to sickle cell disease should also take into account
socio-cultural factors such as race, ethnicity, and culture (Radcliff & Barakat, 2007). Parent-child
communication should be examined within families of African-descent with sickle cell disease.
The current study will examine how child factors (age and disease severity) and parent
factors (parent income and the parent’s level of education) affect parent-child communication
about sickle cell disease, and how this communication in turn impacts children’s and parents’
sense of self-efficacy. This study will examine the following questions and predictions: (1) What
is the relationship between disease severity and both child and parent reported levels of open and
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problem communication? It is predicted that higher disease severity ratings will be related to
higher reported levels of open communication and lower levels of problem communication, (2)
What is the relationship between child age and both child and parent reported levels of open and
problem communication? It is predicted that higher child age will be associated with higher
reported levels of open communication and lower levels of problem communication, (3) What is
the relationship between family income and both child and parent reported levels of open and
problem communication? It is predicted that higher family incomes will be related to higher
reported levels of open communication and lower reported levels of problem communication, (4)
What is the relationship between parent level of education and both child and parent reported
levels of open and problem communication? It is predicted that higher levels of parent education
will be related to higher reported levels of open communication and lower levels of problem
communication, and (5) What is the relationship between both child and parent reported levels of
open and problem communication and parent-child reported levels of self-efficacy? It is
predicted that higher ratings of open communication and lower levels of problem communication
will be related to higher ratings of self-efficacy.
Method
Participants
Participants were 10 Black/African American children (10 to 17 years old) diagnosed
with sickle cell disease, and one of their parents/primary caretakers. All participants were
recruited from the Pediatric Sickle Cell Disease Clinic at Vanderbilt Children’s Hospital and had
experienced at least one sickle cell disease pain episode within the last 12 months. To be
included in the study, the child also had to be residing with the parent or guardian who provided
consent for their participation in the study. Individuals with a chronic illness in addition to sickle
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cell disease that was not related to or caused by their sickle cell disease were excluded.
Individuals who would be unable to complete a battery of questionnaires due to a known
cognitive disability or the inability to speak English were also excluded.
Measures
Parent factors. A demographic questionnaire completed by the parent/primary caregiver
was used to obtain information about the parent's education and income. Parents were asked to
circle the number that represented their highest level of education completed. Response
categories ranged from "1" 'eighth grade or lower' to "8" 'Ph.D/MD/J.D'. Parents were also asked
to indicate their family’s income over the last year. Response categories ranged from "1" '
less than $9,999' to "12" ' over $120,000'. Information regarding parents' other demographic
characteristics (e.g., age, gender, and marital status) as well as information regarding their
children’s characteristics (e.g., age, race, grade, gender) were reported on the demographic
questionnaire.
Child Factors. Two child factors were examined in this study: child age and sickle cell
disease severity. Child age was reported by the parent/primary caregiver on the demographic
questionnaire. Sickle cell disease severity was assessed with two indicators: Sickle cell disease
type and the sickle cell pain index.
SCD type. On the demographic form, parents were asked to circle the type of sickle cell
disease their child had. Several types of sickle cell disease were listed as response options
including Hemoblogin Hb SS, Hemoglobin Hb SC, and Hemoglobin thalassemia.
Sickle cell pain index. This measure was an adaptation of Thomsen et al., (2002) and
Walker, Garber, Smith, Van Slyke, & Lewis Clarr’s (2001) Abdominal Pain Index. Four
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questions were used to provide a baseline for the frequency, daily frequency, duration, and
severity of the child’s sickle cell pain within the last month. The parents reported on their
children’s experience with sickle cell pain within the last month, and the children reported on
their own experience with sickle cell pain within the last month. Response options for the
frequency of pain related to sickle cell disease over the last month ranged from “0” ‘not at all’ to
“8” ‘everyday.’ Response options concerning the daily frequency of sickle cell disease pain
experienced by the child within the last month ranged from “1” ‘none’ to “6” ‘constant during
the day.’ For duration, participants were asked to estimate the amount of time, on average, the
child’s sickle cell disease pain lasted when he or she experienced it. Response options ranged
from “1” ‘no pain’ to “9” ‘all day (it never completely stops).’ For severity, the participants were
asked to rate the degree of sickle cell pain experienced by the child. The response options for the
severity of pain experienced ranged from “1” ‘no pain’ to “10” ‘most pain possible’. Z scores
were created to obtain total scores for both parent-rated and child-rated disease severity. The
alpha reliability for the original measure was .78 (Thomsen el al., 2002).
Parent and child communication. The Parent Adolescent Communication Scale
(PACS; Barnes & Olson, 1982; Barnes & Olson, 1985) was used to examine the content and
process of parent-child communication. Parents responded about their communication with their
child and children responded about their communication with their parent. The measure consists
of two subscales, which assess the positive and negative aspects of parent-child communication.
The 10-item Open Family Communication subscale measures the amount of openness in
communication among family members. Open communication is a free-flowing, unrestricted,
[frequent] exchange of factual and emotional information as well as the level of satisfaction and
understanding produced in the interaction (Barnes & Olson, 1982). The openness subscale
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contains items such as, “My [mother] tries to understand my point of view.” The Problem
subscale assesses the extent of problems within parent-child communication. Problematic
communication focuses on the hesitancy to exchange information, the negative style of
communication, selectivity and caution in what content is exchanged (Barnes & Olson, 1982).
The extent of problems subscale includes items such as “I don’t think I can tell my [mother]
about some things.”
Participants use a five-point Likert scale (1 = strongly disagree; 5 = strongly agree) to
indicate how much they agree with each item. Higher scores on the problem scale reflect a
higher degree of perceived problems in communication between the parent and child and higher
scores on the open communication scale reflect a higher degree of openness in parent-child
communication. Barnes and Olson (1985) list the alpha reliabilities for the two subscales as .87
and .78, and the test-retest reliability for the openness scale and problems scale as .78 and .77.
Self-Efficacy. The Sickle Cell Self-Efficacy Scale (SCSES; Edwards et al., 2001) consists
of nine questions that assess how confident individuals with sickle cell disease are in their ability
to manage the symptoms of their illness and function on a day-to-day basis. Children reported on
how confident they were in their ability to manage their own sickle cell disease symptoms and
function on a daily basis. Parents reported on how confident they were in their ability to manage
their children’s sickle cell disease symptoms, as well as help their children function on a day-today basis. This scale includes questions such as, “How sure are you that you can keep sickle cell
disease pain from interfering with [your/your child’s] sleep?” Response options on this scale
range from “1” ‘not at all sure’ to “5” ‘very sure.’ The total score for this measure was obtained
by taking the mean of the nine items, with higher scores reflecting greater sickle cell self-
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efficacy. The SCSES demonstrated adequate to good internal consistency with an alpha value of
.89 (Edwards et al., 2001).
The Chronic Disease Self-Efficacy Scale (CDSE; Lorig et al., 1996) was created to assess
the self-efficacy and health-related behaviors of middle class Caucasians. This study used an
altered version of this scale, and children and parents each completed their own forms. The child
form assessed the self-efficacy of African-American children (10 years and above) with sickle
cell disease in relation to their ability to handle certain health-related situations. The parent form
assessed the self-efficacy of the participating parent in terms of his or her ability to handle
situations related to the health of his or her child. The vocabulary used in these altered versions
was less difficult than that used in the original version meant for middle class Caucasian adults.
For instance, the phrase “affects your everyday life” was changed to “bothers you every day” and
words like “reduce” were simplified to “cut down on” so that children could also comprehend
the questions. The term “illness” used in the original measure was also changed to say “sickle
cell disease.”
The current study utilized 3 of the 10 subscales identified in the original measure:
“communicate with physician” scale (3 items), “manage disease in general” scale (5 items), and
“manage symptoms” scale (5 items). These subscales assessed the individual’s self-efficacy in
terms of communicating with the child’s physician, managing the child’s sickle cell disease, and
managing the child’s sickle cell disease symptoms. The “communicate with physician” scale
included questions such as, “How confident are you that you can talk with [your/your child’s]
doctor about any personal problems that may be related to [your/your child’s] Sickle Cell
Disease?” The “manage disease in general” scale included questions such as, “How confident are
you that you can do all the things needed to take care of [your/your child’s] Sickle Cell Disease
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every day?” And the “manage symptoms” scale included questions such as, “How confident are
you that you can cut down on [your/your child’s] physical discomfort or pain?” There were 13
items total. Participants answered questions by circling a number between 1, meaning “not at all
confident,” and 10, “totally confident.”
Design
This was a cross-sectional study that used quantitative self-report measures related to
sickle cell disease pain, parent-child communication, and self-efficacy. It also consisted of
qualitative parent-child dyad interviews on communication about sickle cell disease.
Procedure
Participants were recruited from the Pediatric Sickle Cell Disease Clinic at Vanderbilt
Children’s Hospital. Eligible participants signed consent and assent forms before completing a
packet of questionnaires containing measures of sickle cell pain, stressors, coping and parentchild communication. Parents also completed a demographic form. Parents and children were
placed in separate rooms while they completed their questionnaires. Parents remained in the
original room while children were moved to another room. After the participants completed their
questionnaires, they moved to the rooms in which their dyad interviews were held. In each dyad
interview the pairs were asked to participate in a semi-structured interview in which they
answered questions related to parent-child communication about sickle cell disease pain and pain
management, as well about being African-American and having sickle cell disease or a child
with the disease. These interviews were audio taped and a note-taker was also present to take
note of any observable behavior that occurred during the interview.
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Results
Data analysis
All analyses were conducted with SPSS software, version, 21.0. Descriptive statistics
were used to assess participants’ demographic characteristics. Mean, minimum, and maximum
values were calculated for the parent-child communication, self-efficacy, and sickle cell severity
measures. The non-parametric statistic, Wilcoxon Signed-Ranks test, was used to assess whether
parent and child reports on the parent and child communication scale and the sickle cell pain
index differed significantly. The Wilcoxon Signed-Ranks test is appropriate for use with sample
sizes that are smaller than 30 participants, as well as when the assumptions of a normal
distribution cannot be made. This test lessens the chances that Type I errors (i.e., false positives)
are made during the analysis. No significant results were found. To answer the research
questions, Kendall Tau Correlational tests were performed. This test is appropriate for use when
assumptions of normality cannot be made. All data were considered significant at p < . 05 and
moderately significant at p <. 10.
Tables 1 and 2 contain information regarding the demographic characteristics of the
parent and child participants in this study. Only one parent in the study was not a mother and the
majority of parents were married. Parents’ educational backgrounds ranged from starting but not
completing high school to graduating from college (Table 1). There was a wide range of family
income. Approximately 70% of the children were girls and this sample included participants with
both HbSS (80%) and HbSC (20%) genotypes (Table 2). Approximately 50% of the children
were pre-adolescents (10 to 13 years old) and 50% were adolescents (14 to 17 years old).
Figures 1-3 show the differences in parent and child reports on the same measures. Figure
1 shows how far apart parent and child open communication scores were from one another.
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Parents and children from families 1 and 9, in particular, differed greatly in how open they felt
their parent-child communication was. Figure 2 shows how far apart parent and child scores
were on the problem communication subscale. Families 6 and 9, in particular, differed greatly in
their interpretation of how problematic their communication was. Figure 3 shows the difference
in parent and child reports on the child’s sickle cell disease severity. For the most part, parent
and child reports on child sickle cell disease severity were similar.
What is the relationship between disease severity and both child and parent reported levels
of open and problem communication?
Kendall Tau Correlational analyses revealed no significant results. Child sickle cell
disease severity, based upon sickle cell type, was not significantly correlated with parent-rated
open communication, parent-rated problem communication, child-rated open communication, or
child-rated problem communication. Child sickle cell disease severity, based upon child ratings
or parent ratings (the child-rated or parent-rated child severity total score), was also not
significantly correlated with parent-rated open communication, parent-rated problem
communication, child-rated open communication, or child-rated problem communication (Table
6).
What is the relationship between child age and both child and parent reported levels of
open and problem communication?
Child age was not significantly correlated with parent-rated open communication, parentrated problem communication, child-rated open communication, or child-rated problem
communication (Table 6).
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What is the relationship between family income and both child and parent reported levels
of open and problem communication?
Correlational tests yielded no significant correlations between family income and parentrated open communication, parent-rated problem communication, or child-rated open
communication. The only moderately significant correlation was between family income and
child-rated problem communication. The association between child-rated problem
communication and family income was .51 (p < .10), indicating that children of families with
higher incomes perceived their families as having more problems in communication than
children from families with lower incomes (Table 5).
What is the relationship between parent level of education and both child and parent
reported levels of open and problem communication?
Parent education was not significantly correlated with parent-rated open communication,
parent-rated problem communication, or child-rated open communication (Table 5). However,
the relationship between parent education and child-rated problem communication was
significant (.65; p<. 05). This indicates that children in families whose participating parent
obtained a higher degree of education, perceived their communication with their parent as having
more problems than that of families with less educated parents.
What is the relationship between both child and parent reported levels of open and
problem communication and parent-child reported levels of self-efficacy?
A significant relationship was not found between child-rated parent-child communication
and child-rated self-efficacy (Table 8). However, several moderately significant correlations
were found between parent-rated parent-child communication and parent-rated self-efficacy
(Table 7). A moderately significant correlation was found between parent-rated open
19
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
20
communication and parent-rated self-efficacy in terms of communicating with a physician (.64; p
< . 10). This means that higher parent-rated open communication was associated with higher
parent-rated self-efficacy in terms of communicating with a physician. A moderately significant
correlation was also found between parent-rated open communication and parent-rated selfefficacy on the “managing the disease” subscale (.66; p < . 10). This means that higher rates of
parent-rated open communication were associated with higher rates of parent-rated self-efficacy
in terms of managing their child’s sickle cell disease.
The association between parent-rated problem communication and parent-rated selfefficacy on the SCSES measure, which examined parent’s self-efficacy in terms of being able to
manage their child’s sickle cell disease and help their child function on a daily basis, was
moderately significant (-.57; p < . 10). This means that higher rates of parent-rated self-efficacy
were associated with lower rates of parent-rated problem communication. Parent-rated problem
communication and parent-rated self-efficacy in terms of managing their child’s sickle cell
disease were also moderately significant (-.66; p < . 10). Higher rates of parent-rated selfefficacy in terms of managing pediatric sickle cell disease were associated with lower rates of
problem communication.
Discussion
While previous research (Clafin & Barbarin, 1991) revealed that parent-child
communication changed based on the state of the child’s chronic condition, sickle cell disease
severity was not significantly correlated with parent-child communication in this study. These
results may be due in part to the lack of diversity in terms of differing levels of sickle cell disease
severity within this sample.
20
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
21
While two different sickle cell disease genotypes were represented in this sample, only
two out of the ten participants did not have the HbSS genotype. Additionally, the children in the
sample tended to, on average, report themselves as experiencing relatively low rates of sickle cell
disease pain. Parents, on average, also tended to rate their child’s sickle cell disease as being low
in intensity, duration, and frequency. Based on these reports, it seems like, on average, the
children were not experiencing a great deal of sickle cell related pain. A larger sample that had
more diversity in terms of participants’ sickle cell genotype and pain experience may have
yielded different results.
The association between child age and parent-child communication was also not
significant within this study. However, this study only examined how problematic or open
parent-child communication was in general. The communication scale used in this study (PACS)
did not directly examine communication about sickle cell disease. This study also did not
examine whether families of adolescents communicated about different topics than families of
pre-adolescents. Research has found that child age tends to be associated with the content of
parent-child communication (Claflin & Barbarin, 1991; Clarke et al. 2005). Child age tends to be
associated with communication related to disease prognosis and other health-related content. It
may be that child age was associated with parent-child communication but not in terms of open
and problematic communication, but in terms of the content of parent-child communication. It is
also possible that these results may have been different if a larger sample size was used.
Research (Barakat et al., 2007) has shown that family income can affect levels of parental
stress. Parental stress, in turn, is known to affect parent-child communication (Ponnet et al.,
2013). Therefore, it was predicted that family income would also be associated with changes in
parent-child communication. While the results of this study do show that family income is
21
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
22
associated with children’s reports of parent-child problem communication. These two variables
are positively correlated, when it was predicted that they would be negatively correlated. Instead
of higher family incomes being associated with lower child-ratings of parent-child problem
communication, the results of this study suggest that higher family incomes are associated with
higher rates of problem communication. It may be possible that parents with higher incomes are
spending more time working and thus unable to communicate as frequently with their child as
parents with lower incomes do.
A significant correlation was found between parent education and child-rated problem
communication. However, it was predicted that parent education and child-rated parent-child
communication would be negatively correlated instead of positively correlated. These results
suggest that children in families with more educated parents may be having problems
communicating despite parents’ educational achievement. It may be possible that parents with
different levels of education communicate with their children differently. Parents who are more
educated may engage in more instrumental communication whereas other parents may engage in
more emotional communication. As a result of this, children of more highly educated parents
may feel that their communication with their parents is more problematic.
Whereas neither child-rated problem communication nor child-rated open communication
were correlated with child self-efficacy ratings on any scale, parent-rated open communication
and parent-rated problem communication were significantly correlated with parent-rated selfefficacy ratings. Parent-rated parent-child open communication was correlated with self-efficacy
on both the “communication with physician” and the “managing disease in general” subscales.
This research suggests that higher rates of parent-child open communication, as perceived by the
parent, are associated with high parent-ratings of self-efficacy in terms of both managing
22
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
23
pediatric sickle cell disease and communicating with physicians. Parent-rated parent-child
problem communication is also associated with parent self-efficacy ratings in terms of managing
pediatric sickle cell disease, and in terms of helping their child function on a daily basis. These
results suggests that parents’ perceptions of their communication with their child are related to
parents’ feelings of self-efficacy in terms of engaging in behaviors related to their child’s sickle
cell disease and health.
Limitations
This study had a very small sample size in which some data was also missing due to
some parents not completing all of the required forms. This study also lacked diversity in terms
of sickle cell disease genotypes and severity ratings. Results may have been affected by these
limitations.
Future directions
Research (Clarke et al., 2005) has shown that child age affects the content of parent child
communication about chronic illnesses. This study did not examine the qualitative parent-child
interviews that were a part of the larger study. In the future, it would be interesting to examine
data from these interviews to assess how the content of parent-child communication differs
among families of children with sickle cell disease.
Higher levels of education and higher family incomes were both associated with higher
levels of child-rated parent-child problem communication. While socioeconomic status (SES)
was not examined directly, education and family income are components of SES. It would be
interesting to examine the relationship between SES and parent-child communication in families
of children with sickle cell disease. If people with higher socioeconomic statuses are at risk for
23
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
24
experiencing more instances of problematic communication, interventions may be able to be
developed to target that group.
Acknowledgments
I would like to thank my mentor, Dr. Chase Lesane-Brown, for her guidance and help
these past two years. I would also like to thank the current and past members of the LesaneBrown Health and Communication lab who carried out the larger project from which the data for
this study was taken. Lastly, I would like to thank Dr. Megan Saylor, co-director of the Honors
Program in Psychology at Vanderbilt University.
24
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
25
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Table 1
Parent Demographic Characteristics (N = 10)
Measure
Valid % (count)
Relationship to child
Mother
90.00% (9)
Father
10.00% (1)
Educationa
Some high school/high school
37.50% (3)
Some college
37.50% (3)
Received Bachelor's Degree
25.00% (2)
Family Income ($) a
10,000-29,000
37.50% (3)
30,000-39,999
25.00% (2)
50,000-59,999
12.50% (1)
70,000-79,999
25.00% (2)
Agea
34-37
25.00% (2)
40-47
62.50% (5)
53
12.50% (1)
Marital Statusa
a
Married
62.50% (5)
Separated
25.00% (2)
Single
12.50% (1)
n = 8 (2 parents did not complete the entire demographic form.)
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
31
Table 2
Child Demographic Characteristics (N = 10)
Characteristic
Valid % (count)
Child gender
Girl
70.00% (7)
Boy
30.00% (3)
Education (Grade in School) a
5th-6th
25.00% (2)
7th-9th
37.50% (3)
10th-12th
37.50% (3)
SCD Type
HbSS
80.00% (8)
HbSC
20.00% (2)
Age
a
Pre-adolescent
50.00% (5)
Adolescent
50.00% (5)
n = 8 (2 parents did not complete the entire demographic form.)
31
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Table 3
Parent and Child Reports of Parent-Child Communication and Personal Self Efficacy (N = 10)
Measure
Mean
Min
Max
Possible
Values
N
Parent-Child Communication (PACS)
Openness- Pa
Problems- Pa
Openness- C
Problems- C
Self-Efficacy (SCSES)
3.81
2.59
4.04
2.45
2.60
1.70
2.70
1.70
4.80
3.50
5.00
3.50
1-5
1-5
1-5
1-5
8
8
10
10
SCSES- Pb
3.96
2.00
4.89
1-5
9
SCSES- C
3.89
3.00
4.78
1-5
10
Communication with physician-Pa
9.83
9.33
10.00
1 - 10
8
Manage Disease- Pa
9.18
7.60
10.00
1 - 10
8
Manage Symptoms- Pa
8.60
7.00
10.00
1 - 10
8
Communication with physician-C
8.80
5.33
10.00
1 – 10
10
Manage Disease- C
8.16
3.40
10.00
1 - 10
10
Manage Symptoms- C
7.88
5.00
10.00
1 - 10
10
Self Efficacy (CDSE)
a
n = 8; bn = 9
32
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Table 4
Parent and Child Reports of Child SCD Severity (N = 10)
Measure
Parent report
Mean
Min
Max
Possible Values
N
Frequency
1.70
1
4
1-8
10
Daily Frequency
1.30
1
2
1-6
10
Duration
3.30
1
8
1-9
10
Intensity
3.30
1
8
1 - 10
10
Severity Total
.00
-2.75
6.63
--
10
Frequency
1.50
1
4
1-8
10
Daily Frequency
1. 80
1
6
1-6
10
Duration
1.90
1
8
1-9
10
Intensity
1.90
1
7
1 - 10
10
Severity Total
.00
-1.81
10.22
--
10
Child Report
33
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Table 5
Bivariate Correlations between Family Income, Parent Education, and Parent and
Child Reports of Parent-Child Communication (PACS)
Measure
Family Income
Openness
Parent
.39
Parent Education
.48
Problems
Parent
-.15
-.32
Openness
Child
-.42
-.36
Problems
Child
.51+
.65*
**p < .01, *p < .05, +p < .10
34
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Table 6
Bivariate Correlations between Child SCD Severity, Child Age, and Parent and Child
Reports of Parent-Child Communication (PACS)
Measure
Openness
Parent
Problems
Parent
Openness
Child
Problems
Child
Child SCD Severity
(Parent Rating)
.12
.25
-.08
-.42
Child SCD Severity
(Child Rating)
-.37
-.16
-.28
.09
-.11
-.33
.00
-.19
-.30
-.15
.14
-.30
Child SCD Type
Child Age
**p < .01, *p < .05, +p < .10
35
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Table 7
Bivariate Correlations between Child Reports of Parent-Child Communication (PACS)
And Child Report of Child Self-efficacy
Measure
Self-efficacy
(Parent SCSES)
Communication
with Physician
(Parent SE)
Managing
Disease
(Parent SE)
Managing
Symptoms
(Parent SE)
Openness Parent
.42
.64+
.66+
.37
Problems Parent
-.57+
-.35
-.66+
-.47
**p < .01, *p < .05, +p < .10
36
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COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
Table 8
Bivariate Correlations between Child Reports of Parent-Child Communication (PACS)
And Child Report of Child Self-efficacy
Measure
Self-efficacy
(Child SCSES)
Communication
with Physician
(Child SE)
Managing
Disease
(Child SE)
Managing
Symptoms
(Child SE)
Openness Child
-.23
-.33
-.11
-.25
Problems Child
.35
.07
.05
.09
**p < .01, *p < .05, +p < .10
37
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
38
Figure Captions
Figure 1. Comparison of parent report (Mdn = 3.90) and child report (Mdn = 4.15) of open
communication (n = 8), z = -.43, n.s. This figure shows the degree of spread between parent and
child report on parent-child open communication.
Figure 2. Comparison of parent report (Mdn = 2.55) and child report (Mdn = 2.40) of problem
communication (n = 8), z = -.84, n.s. This figure shows the degree of spread between parent and
child report on parent-child problem communication.
Figure 3. Comparison of parent report (Mdn = -2.75) and child report (Mdn =-1.81) of SCD
pain severity total (N = 10). z = -.36, n.s. This figure shows the degree of spread between parent
and child report on child sickle cell severity.
38
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
39
Figure 1
39
40
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
P
1
C
2
C
3
P
4
C
Dyad
5
P
P
6
C
7
C
8
C
9
C
10
P
P
P
P
C
11
12
2
3
PACS- Problem
Figure 2
40
41
COMMUNICATION, SELF-EFFICACY, AND SICKLE CELL DISEASE
1
P
C
2
P
C
3
P
C
4
P
C
C
Dyad
5
6
P
C
7
P
C
8
P
C
9
P
C
C
10
P
P
11
12
-3
-2
-1
0
1
2
3
4
5
SCD Pain Severity Total
Figure 3
41