Continuing Nursing Education
Objectives and posttest can be found on page 292.
Parental Perceptions of Risk and
Protective Factors Associated with the
Adaptation of Siblings of Children with
Cystic Fibrosis
Judith O’Haver, Ida M. Moore, Kathleen C. Insel, Pamela G. Reed,
Bernadette Mazurek Melnyk, Michael Lavoie
W
hen a child is diagnosed with a chronic,
life-threatening illness,
there is a significant
impact on the entire family. Well siblings are at risk for psychological
adaptation problems because of their
unique relationship with the ill child
and the effect of the chronic illness
on family functioning (BluebondLangner, 1996; Fanos & Wiener, 1994;
Fleitas, 2000; Heiney, Goon-Johnson,
Ettinger, & Ettinger, 1990; Mellins &
Ehrhardt, 1994; Murray, 1998;
Spinetta, 1981; Van Riper, 1999). To
date, the majority of studies concerning the consequences of a child’s
chronic, life-threatening illness on
the family focus on childhood cancer
(Clarke-Steffen, 1993; Havermans &
Eiser, 1994; Kupst et al., 1995; Van
Dongen-Melman et al., 1995). The
repercussion of chronic, life-threatening illness with a known genetic basis,
such as cystic fibrosis, has seldom
been described. The purpose of this
study was to investigate the predisposing risk and protective factors
Judith O’Haver PhD, RN, CPNP-PC, is an
Assistant Professor, Arizona State University
College of Nursing and Health Care
Innovation, Phoenix, AZ, and a Pediatric
Nurse Practitioner, Phoenix Children’s
Hospital, Phoenix, AZ.
Ida M. Moore, DNSc, RN, FAAN, is Professor
and Director, Nursing Practice Division,
College of Nursing, University of Arizona,
Tucson, AZ.
Kathleen C. Insel, PhD, RN, is an Associate
Professor, College of Nursing, University of
Arizona, Tucson, AZ.
Pamela G. Reed, PhD, RN, FAAN, is a
Professor, College of Nursing, University of
Arizona, Tucson, AZ.
284
When a child is diagnosed with a chronic, life-threatening illness, there is a significant impact on the healthy siblings. Few studies have addressed the adaptation of well siblings in diagnoses other than cancer. The purpose of this descriptive correlational study was to examine the relationships between the risk and
protective factors that affect the psychological adaptation of healthy siblings of a
child with cystic fibrosis. Findings from this study suggest family environment,
especially parental stress and perceived social support, may affect the adaptation of the well sibling. Adolescent well siblings were more at risk for environmental influences than their younger counterparts.
associated with the psychological
adaptation of healthy, school-aged
and adolescent well siblings of a child
diagnosed with cystic fibrosis.
Background and
Significance
Cystic fibrosis is a terminal, genetic
disease. In 2006, the Cystic Fibrosis
Foundation reported the mean age of
survival for affected persons was 37
years of age. The psychological adaptation of a well sibling of a child diagnosed with a chronic illness, such as
cystic fibrosis, is dependent on many
factors, both internal and external to
the sibling. As a result, the child may
be at risk for developing internalizing
behaviors (such as anxiety, depression,
somatization) and externalizing behaviors (such as hyperactivity, aggression, conduct problems), or they may
adapt by developing protective behaviors (such as adaptability, leadership,
social skills).
Well siblings of children who have
been diagnosed with cancer have been
extensively studied; however, there
are limited reports on well siblings of
children diagnosed with other chronic illnesses. Research has suggested risk
factors for well siblings of children
with a chronic illnesses that may
affect adaptation include lower socioeconomic status (Dunst, 1993; Gore,
Aseltine, & Colton, 1992; Hymovich
& Roehnert, 1989; VanDongenMelman et.al., 1995), emotional prob-
Bernadette Mazurek Melnyk, PhD, RN, CPNP/NPP, FNAP, FAAN, is Dean and Distinguished
Foundation Professor in Nursing, Arizona State University College of Nursing and Health Care
Innovation, Phoenix, AZ, and a member of Pediatric Nursing’s Editorial Board.
Michael Lavoie, PhD, is a Clinical Psychologist, Phoenix Children’s Hospital, Phoenix, AZ; a
Clinical Associate Professor of Pediatrics, University of Arizona Medical School; an Adjunct
Faculty Member, Divisions of Clinical, Counseling, and Educational Psychology, Arizona State
University; and the Current President, Arizona Neuropsychological Society.
Acknowledgment: The authors would like to gratefully acknowledge the funding provided for this
project by the University of Arizona and the Beta Upsilon Chapter of Sigma Theta Tau.
Statement of Disclosure: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education article.
The Pediatric Nursing journal Editorial Board reported no actual or potential conflict of interest in
relation to this continuing nursing education article.
PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6
lems present in the well sibling before
the child with cystic fibrosis was diagnosed, and concurrent stressors
(Carter, Urey, & Eid, 1992; Dunst,
1993; Garmezy, 1988; Gore et al,
1992; Hetherington, 1989; Hymovich
& Roehnert, 1989; Kupst, 1993).
Factors such as social support (Gore
et. al., 1992), having a parent care for
the well sibling when the child with
cystic fibrosis is ill (Knafl & Dixon,
1983), and information from
providers directly to well siblings
(Fleitas, 2000; Havermans & Eiser,
1994) may be protective and positively affect the psychological adaptation
of the well sibling. Additionally,
maternal education (Sawyer, 1992),
age and gender of the well sibling
(Gore et. al., 1992; Kim, Conger, Elder,
& Lorenz, 2003; Sahler et al. 1994;
Sargent et al., 1995; Van DongenMelman et al., 1995), and severity of
the illness of the child with cystic
fibrosis (Bluebond-Langer, 1996;
Carter et al., 1992) may predict either
positive or negative adaptation for
well siblings.
Conceptual Framework
A risk and protective model was
used as the conceptual framework for
this study. This model proposed there
are identifiable risks and protective
factors that relate to the adaptation of
healthy siblings of children with cystic fibrosis. An assumption underlying the framework is children
exposed to stressors attempt to adapt.
This may result in either positive or
negative outcomes.
Risk was defined as variables that
were more likely to be associated with
an undesirable outcome. Aday (2001)
noted within the concept of risk is the
assumption that an adverse, healthrelated outcome could occur.
Researchers have suggested the number of risk factors may affect adaptation (Allen, 1998; Kupst, 1993), and
adverse effects may potentiate each
other, especially if there are chronic
stressors (Rutter, 1988). Examples of
risk factors found to be significant in
families where a child has been diagnosed with cancer include lower
socioeconomic status; low level of
support; pre-existing, serious psychological problems in a family member;
and inadequate resources (Dunst,
1993; Hymovich & Roehnert, 1989;
Kupst, 1993; Van Dongen-Melman,
1995).
Protective factors may be individual or environmental, may provide
resistance to risk, and may lead to
outcomes with positive adaptation.
The effectiveness of these factors may
differ according to the child’s developmental level, gender, individual
characteristics (such as easy temperament and good coping skills), and
environmental factors (such as interpersonal relationships and higher
socioeconomic status), among others
(Allen, 1998).
Research Questions
Specific factors were identified
based on the review of the literature
and the model developed for this
study as possibly associated with the
adaptation in well siblings of children
with cystic fibrosis. The following
research questions were formulated to
explore relationships among specific
variables:
• What is the relationship among
perception of financial well-being
by parents, emotional problems
in well siblings prior to the diagnosis of cystic fibrosis in the sick
child, parent’s self-perceived stress,
parent’s self-perceived social support, and severity of illness for the
child with cystic fibrosis on the
adaptation of well siblings of children with cystic fibrosis?
• What is the relationship among
the Emotional Symptoms Index
(ESI) reported by the well sibling,
the Behavioral Symptoms Index
(BSI) reported by the parents, and
internalizing and externalizing
behaviors in well siblings of children with cystic fibrosis?
• What is the relationship between
the following variables in well siblings of children with cystic fibrosis and their parents’ report of the
well child's internalizing and
externalizing behaviors: maternal
education, information provided
to the well sibling about cystic
fibrosis, and parents' presence as
caretakers of the well child when
the child with cystic fibrosis is ill
or hospitalized?
Methods
Design
This study used a descriptive correlational design to examine the relationships between selected risk and
protective factors identified in the literature that may predispose the well
sibling of a child with cystic fibrosis to
problems with adaptation.
A convenience sample of 40 well
siblings of children diagnosed with
cystic fibrosis was obtained from two
cystic fibrosis clinics in three loca-
PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6
tions, which encompassed all patients
registered in the cystic fibrosis registry
in a southwestern state. All siblings of
children who attended these clinics
were eligible for inclusion in this
study if they were a) biologically related, b) between 8 to 18 years of age for
two clinics and 8 to 17 years of age in
the remaining clinic, c) were able to
read and speak English, d) did not
have cystic fibrosis , and e) lived with
the child with cystic fibrosis at least
50% of the time. Only one sibling was
allowed to participate per family. The
parent identified which child would
participate if more than one met
inclusion criteria.
Measures
Demographic and health-related
information form. The first author
developed the demographic instrument for this study. Demographic
data consisted of 20 questions
(including age and gender of children
at home, perception of financial wellbeing). Perception of financial well
being was self-reported on a 5-point
scale, with “1 = not enough money”
and “5 = having enough money to do
whatever we want.”
Behavioral Assessment System
for Children (BASC) instrument.
The Behavioral Assessment System for
Children (BASC) instrument was used
to measure psychological adaptation
for children and adolescents in this
study. Age-appropriate versions (child,
adolescent, parent) of the BASC tool
were administered to the well siblings
and their parents. This instrument is
developmentally sensitive and provides an objective measure to assess
risk and adaptive skills. The authors
established construct validity based
on previous work, historical precedent measuring personality traits and
pathological behaviors, and a review
of more than 20 behavior and selfreport instruments (Reynolds &
Kamphaus, 1998).
For the parent version of the BASC
instrument, parents report their children’s observed behavior over the past
six months. There are two versions of
the parent BASC: 1) the child version
for children 6 to 11 years of age and
consisting of 138 items, and 2) the
adolescent version for teens 12 to 18
years of age and consisting of 126
items. Parents are asked to rate the
child’s behavior on a 4-point scale,
with choices ranging from “1 = never”
to “4 = almost always.” Items reflect
behaviors in different situations, such
as “cries easily” and “forgets things.”
Critical items are also identified (such
as “Says I want to die or I wish I were
285
Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis
Table 1.
Components of BASC Scales
Parent Composites
Scales
Child/Adolescent
Composites
Scales
Internalizing behaviors
Anxiety
Depression
Somatization
Clinical maladjustment
Anxiety
Atypicality
Locus of control
Social stress
Somatization (adolescent)
Externalizing behaviors
Hyperactivity
Aggression
Conduct problems
School maladjustment
Attitude to school
Attitude to teachers
Sensation seeking (adolescents)
School problems
Attention problems
Other problems
Depression
Sense of inadequacy
Other problems
Atypicality
Withdrawal
Personal adjustment
Relations with parents
Interpersonal relations
Self-esteem
Self-reliance
Adaptive skills
Adaptability
Leadership
Social skills
Behavior symptom index
Combination of clinical
components
Emotional symptoms index
Global personality problems
Behavior problems
Source: Reynolds & Kamphaus, 1998.
dead,” “Says I want to kill myself,” or
“Threatens to hurt others”).
A Behavioral Symptoms Index
(BSI), which is an overall measure of
problem behavior, is tabulated from a
combination of scales from the clinical composites on the parental version of the BASC. The BSI reliability is
reported at 0.88 to 0.94 (Reynolds &
Kamphaus, 1998).
Both the child and adolescent versions of the BASC follow a true/false
format. The child version consists of
152 items, and the adolescent version
has 186 items. Questions are in statement form, such as “My teacher cares
about me” and “No one understands
me” in the child version, and “I just
don’t care anymore” and “I wish I
were someone else” in the adolescent
version. Critical items are also identified in these instruments, such as
“Nobody likes me” (child) and “No
one understands me” (adolescent)
“Sometimes I want to hurt myself”
(child and adolescent), which are also
addressed individually.
The Emotional Symptoms Index
(ESI) is an overall composite of scores
based on self-report scores of the child
and adolescent version of the BASC,
and it provides an indication of global personality and behavior problems
(see Table 1). This score is sensitive to
286
internalizing behaviors and is an indicator of emotional difficulties.
Coefficient alpha reliabilities for the
ESI have been reported at greater than
0.95 for children and adolescents
(Reynolds & Kamphaus, 1998).
Coefficient alpha reliabilities for the
instruments in this sample were
acceptable and are reported in Table
2. Data for the BASC were analyzed
with the statistical software purchased
for the BASC instrument and then
entered into SPSS.
Multidimensional Scale of Perceived Social Support. The Multidimensional Scale of Perceived Social
Support (MSPSS) consists of 12 items
divided into three factor groups (family, friends, significant others) that
relate to the source of the social support (Zimet, Dahlem, Zimet, & Farley,
1988). For each category, four questions address the respondent’s feelings regarding the support offered by
the person(s) named in the question.
Seven choices range from “1 = very
strongly disagree” to “7 = very strongly agree.” Scoring is based on means
derived from the responses for the
three subscales and the total of all 12
items (personal communication, G.
Zimet, October 12, 2005). The MSPSS
was validated on four samples of
adults. Cronbach’s coefficient alpha
values ranged from 0.81 to 0.94.
Factor analysis was also conducted
and reported. Items were specific for
their intended factors, with minimal
cross loading indicating that the subjects were able to differentiate the
source of their support (Zimet et. al.,
1988; Zimet, Powell, Farley, Werkman,
& Berkoff, 1990). In this sample,
Cronbach’s alpha coefficients were
0.98 for the total scale and 0.98 for the
subscales.
The Perceived Stress Scale. The
10-item Perceived Stress Scale (PSS10)
was used to measure the degree to
which the parent perceives that life
events are stressful (Cohen &
Williamson, 1988). The construct
validity of the 10-item scale has been
supported through factor analysis. In
the PSS10, parents are asked 10 questions about their feelings and
thoughts over the past month. Items
include statements such as “In the
last month, how often have you felt
that you were on top of things?” The
choices range from “never” to “very
often.” PSS scores are calculated by
summing across items to achieve a
mean score. Possible scores range
from 0 to 4, with higher scores indicating more stress. Cronbach’s alpha
with this sample for the PSS was 0.91.
PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6
Table 2.
Reliability Coefficients of Instruments Used in this Sample
n
Cronbach’s
Alpha
Number
of Items
Child
17
0.690
13
Adolescent
23
0.743
11
Child
17
0.765
10
Adolescent
23
0.597
10
Child
17
0.373
11
Adolescent
23
0.758
14
Instrument
BASC
Externalizing behaviors
Aggression
Hyperactivity
Conduct
Internalizing behaviors
Procedure
Anxiety
Child
16
0.828
11
Adolescent
23
0.777
10
Child
17
0.814
12
Adolescent
23
0.754
11
Child
17
0.543
13
Adolescent
22
0.793
12
14
0.322
7
Child
17
0.831
11
Adolescent
23
0.890
12
Child
17
0.837
14
Adolescent
22
0.906
12
39
0.912
10
Friend subscale
39
0.982
4
Family subscale
40
0.975
4
Significant other subscale
39
0.979
4
Total scale
38
0.981
12
Depression
Somatization
Adaptability
Adaptability (child)
Leadership
Social skills
Perceived Stress Scale
Severity of illness. Severity of illness of the child with cystic fibrosis
was determined by a chart review of
the severity of disease and number of
hospitalizations or exacerbations.
Severity of disease was coded according to FEV1 (a measurement of lung
function that is an estimate of assessing airway obstruction) and was
obtained if the child was able to participate during clinic visits. Classification
was based on values used in the cystic
fibrosis clinic by the medical director,
with mild disease as greater than 70%
lung function, moderate as 40% to
70%, and severe as less than 40% (personal communication, P. Radford,
October 18, 2005). Z scores were calculated for FEV1, exacerbations, and
hospitalizations, and the sums of
these scores were used to develop a
severity of illness composite score.
MSPSS
Source: O’Haver, 2007.
PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6
Institutional Review Board approval was obtained from the three
institutions that participated in the
study. Clinic personnel reviewed the
scheduled appointments, identified
eligible well siblings, and asked the
families at the clinic visit if they
would be willing to discuss the study
with the researcher. If the parent
agreed to participate, they were asked
to sign a written consent form and
Health Insurance Portability and
Accountability Act (HIPAA) release for
the researcher to review the chart of
the child with cystic fibrosis. They
were then asked to complete the
study instruments. If the well siblings
were present and the parent agreed,
the well siblings were asked to participate and sign an assent form according to institution policy. They were
then asked to complete the child/adolescent BASC appropriate for age. If
the sibling did not accompany the
child with cystic fibrosis to the visit,
the parent/guardian was asked to
complete the parental portion of the
survey, and the instruments and
assent form were sent home with the
parents with a self-addressed stamped
envelope for its return. If the institution allowed telephone assent, well
siblings were contacted by phone at a
mutually agreed upon time to discuss
the study and assist with the instrument completion if the well sibling
agreed to participate. The well sibling
determined if she or he preferred to
complete the questionnaire independently or verbally over the phone
to the researcher. Each participant
received a $5 gift certificate. Results of
each completed BASC instrument
were discussed with a clinical psy287
Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis
Table 3.
Demographic Information of Well Siblings
Severity of Illness
n (%)
Variable
Children 8 to 11 years old
17 (42.5%)
Adolescents 12 to 17 years old
23 (57.5%)
Males
23 (57.5%)
Female
17 (42.5%)
No medical problems in the past 2 years
18
No behavioral problems prior to diagnosis of cystic fibrosis
35 (89.7%)
(45%)
Table 4.
Scores for the Multidimensional Scale of Perceived Social Support
(MSPSS)
N
Minimum
Maximum
Mean (SD)
Subscale total friends
40
1.00
7.00
5.09 (2.00)
Subscale total family
40
1.00
7.00
5.12 (2.01)
Subscale total significant other
40
1.00
7.00
5.30 (2.03)
Total instrument
40
1.00
9.26
5.32 (1.96)
Source: O’Haver, 2007.
Table 5.
Significant Spearman rho Correlation Coefficients between Selected
Variables (rho = N-2)
Total MSPSS
Total PSS
NS
-0.53(38) **
-0.36(37)*
NS
Composite illness
NS
NS
BSI for all participants
NS
0.36(38)*
-0.56(21)**
0.54(21)**
NS
NS
Making ends meet
Emotional problems in well sibling prior to diagnosis
of cystic fibrosis
BSI for adolescents only
BSI for children only
Findings
Sample
A total of 44 parents consented to
participate in this study during their
clinic visit. Forty parents and 31 well
siblings returned the surveys and were
included in this analysis. One set of
288
Demographic and HealthRelated Information Form
The 40 well siblings whose parents
participated ranged in age from 8
to17 years, with a mean of 12.16 years
(SD = 2.66). Demographic characteristics are reported in Table 3. Parents
reported the cystic fibrosis team had
never discussed cystic fibrosis with
the well sibling for 75% (n = 30) of
this sample. Four children were
reported to have had this discussion
once (10%), and 4 (10%) children had
this discussion when there was a
change in health status of the child
with cystic fibrosis. Two parents (5%)
reported this discussion occurred at
most visits.
Parents were asked to list the
behavioral or emotional problems of
the well sibling prior to the diagnosis
of cystic fibrosis in their brother or sister. Four of the 39 parents who
responded indicated that problems
existed in the well sibling prior to the
cystic fibrosis diagnosis. These problems were identified as anxiety disorder and depression (n = 1), vocal tic (n
= 1), bedwetting (n = 1), and anger
and frustration (n = 1).
The Perceived Stress Scale
*Correlation is significant at the 0.05 level (2-tailed).
**Correlation is significant at the 0.01 level (2-tailed).
Notes: NS = not significant; MSPSS = Multidimensional Scale of Perceived Social
Support (reported by parents); PSS = Perceived Stress Scale (reported by parents).
chologist who specializes in pediatrics. Recommendations based on
the results of the individual testing
were communicated to parents by
phone by the researcher if warranted.
Classification of lung compromise
was available for 37 children with cystic fibrosis. Thirty-three of the affected children (82.5%) were classified as
mild, 3 (7.5%) with moderate (40% to
70%) lung function, and 1 (2.5%)
with less than 40% lung function.
surveys were answered for each well
sibling. Parents were allowed to discuss the answers prior to selection
between themselves. No demographic
data were available for the children of
the four parents who consented but
did not return the completed surveys,
and they were not included. Parents
reported years of completed schooling for the mother ranged from 10 to
18 years, with a mean of 14.5 years
(SD = 2.01; n = 38). Financial wellbeing was assessed on a 5-point Likert
scale. The mean score for this sample
(n = 40) was 3.63 (SD = 0.84).
For the total sample, reported perceived stress scores of parents in the
past month ranged from 4 to 35, with
a mean of 14.7 (SD = 7.26). Parents also
reported on social support from their
family, friends, and significant other.
The mean of the subscales in this sample ranged from 5.09 to 5.30, and the
total scale was 5.32 (see Table 4).
Research Questions
Research question #1. To determine if selected factors were associated with adaptation in the well siblings
of children with cystic fibrosis, the
relationships among several variables
were explored and are summarized in
Table 5.
Spearman rho statistics were used.
For parents, total stress and financial
well-being were significantly negatively associated (rs [38] = -0.53,
p < 0.01) as were emotional problems
in well siblings prior to the diagnosis
of cystic fibrosis and parental perceived social support (rs [37] = -0.36,
p < 0.05). Specifically, parents with
PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6
Table 6.
Correlation of BSI and ESI and Their Relationship with Internalizing
and Externalizing Behaviors
Variables
Spearman rho (rs)
Child
Adolescent
BSI and ESI
(n = 13) 0.18
(n = 14) 0.57*
ESI and internalizing
(n = 13) 0.43
(n = 14) 0.52*
ESI and externalizing
(n = 13) -0.08
(n = 14) 0.30
* Correlation is significant at the 0.05 level (2-tailed).
higher total stress scores perceived
less financial well-being, and parents
who reported children with emotional or behavioral problems prior to the
diagnosis of cystic fibrosis in the sick
child had less social support. A significant positive association was also
noted between total stress in the parent and the combined BSI score for
well siblings (rs [38] = 0.36, p < 0.05).
When calculated as individual wellsibling groups (school-aged children
and adolescents), this correlation was
not significant for the children but
remained significant in the adolescent group between BSI and the
parental report of perceived stress (rs
[21] = 0.54, p < 0.01) and perceived
social support (rs [21] = -0.56, p <
0.01). These findings indicate parents
who had higher stress scores reported
adolescents with greater behavioral
symptoms, and parents with adolescents with greater behavioral symptoms perceived they had less social
support. No other significant correlations were found.
Research question #2. The relationship between parental reports of
internalizing and externalizing behaviors in well siblings of children with
cystic fibrosis and overall problem
behavior as evidenced by the BSI was
compared to the child self-report of
global personality and behavioral
problems as evidenced by the ESI.
Additionally, the relationship between
the internalizing and externalizing
behaviors’ subscales and the ESI was
examined. For well siblings who were
children in this sample, BSI was not
significantly related to the ESI. This
indicated the parental report of problem behavior did not demonstrate a
relationship with behavior problems
reported by the children. Furthermore,
no significant correlation was found
between the ESI and internalizing
behaviors or externalizing behaviors.
For adolescents, a significant correlation was found between the BSI and
the ESI (rs [12] = 0.57, p < 0.05). There
was also a significant relationship
between the ESI and internalizing
behaviors, but the relationship was not
significant between the ESI and externalizing behaviors (see Table 6).
Research question #3. The relationship between the presence of a
parent as a caretaker for well siblings
when the child with cystic fibrosis is
ill or hospitalized and information
provided by the medical team to the
well sibling about cystic fibrosis with
internalizing and externalizing behaviors was also investigated. In this
sample, 31 (n = 40) of the well siblings
were cared for by a parent when the
child with cystic fibrosis was in the
hospital at least some of the time.
One parent responded that someone
other than a parent took care of the
well sibling when child with cystic
fibrosis was ill. Parent as a caretaker
when the child with cystic fibrosis
was hospitalized was not significantly
correlated with internalizing or externalizing behaviors. There was a significant negative correlation between
externalizing behaviors of the well
sibling when there had been a discussion about their brother or sister with
cystic fibrosis with the medical team
(rs [15] = -0.51, p < 0.05) in that when
discussion occurred, there were less
negative behaviors reported by the
parents. This relationship was not
found for externalizing behaviors in
adolescents (rs [21] = -0.24, p > 0.05).
The discussion did not have a significant relationship with either children
or adolescents and their reported
internalizing behaviors. Additionally,
years of maternal education was not
significantly correlated to internalizing or externalizing behaviors in the
well siblings.
Discussion
This study proposed the psychological adaptation of well siblings of
children with cystic fibrosis would be
affected by certain psychological and
PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6
environmental factors. In this sample,
adolescent well siblings were more
affected by the family environment
than younger siblings. Parental stress
and lack of social support were risk
factors for the adolescent sibling’s
adaptation. Parents were negatively
affected by financial worries and
behavioral problems in their well children prior to the diagnosis of cystic
fibrosis in the sick child, which may
have had an impact on the adolescent
sibling’s adaptation. Parental report of
internalizing behaviors and the BSI in
the adolescent siblings were related,
which suggests the parent may perceive some of the actual feelings of
their adolescents. Younger adolescents exhibited more internalizing
behaviors than their older counterparts, which suggests that adaptation
may be age dependent. A protective
factor in children appears to be the
discussion with the medical team
about the cystic fibrosis diagnosis.
Major findings from this study suggest sibling adaptation when a child
in the family has cystic fibrosis is
influenced by the parental report of
perceived stress and perceived social
support. In this study, parental report
of higher stress was associated with a
lower perception of financial wellbeing. Emotional and behavioral
problems in well siblings prior to the
diagnosis in the child with cystic
fibrosis were associated with less
reported social support for the parents. In addition, there was a significant positive relationship between
adolescent siblings’ BSI and parental
stress, and a significant negative relationship between adolescent well siblings’ BSI scores and social support.
The adolescents’ reported behavior
was highly related to their parents’
reported stress and perceived social
support.
The relationship between increased
parental stress and less social support
for parents resulting in a poorer adaptive response in well siblings suggests
parental influence may affect the adaptation of the well sibling in the household. Sloper and White (1996) suggested problems exhibited by well siblings
may be in part due to the degree of
disruption in daily family life, the
resources available to cope with the
disruption, and the well siblings’ perception of the effects of this illness on
their daily lives. The children with
cystic fibrosis in this sample were generally well. The relationships among
their illness, the presence of the parent as a caretaker for the sibling during hospitalizations for the child with
cystic fibrosis, and the adaptation of
289
Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis
the well sibling may have been affected by the relative lack of disruption in
their daily lives. Additionally, this was
a well-educated population of mothers, so it is difficult to generalize the
findings to families where the mothers may not have had as much schooling.
In this study, only the adolescent
report of ESI was correlated to the
parental report of the BSI. Internalizing behaviors reported by parents for adolescents were also correlated to the ESI. For well siblings who
were children in this sample, there
was no significant relationship
between the self-report with the
report given by their parents for the
BSI or for internalizing or externalizing behaviors. Results of this study
support the suggestion by other
authors that parents are not often
aware of the well siblings’ perception
of their situation (Craft & Craft, 1989;
Houtzager, Grootenhuis, Caron, &
Last, 2005). Houtzager and colleagues
(2005) suggested parental psychological well-being may affect their perception of the well child’s behavior; what
they report in their children may be a
reflection of their own worries.
Multidisciplinary teams care for
the children and their families in the
clinics studied; therefore, it was surprising that 75% of the well siblings
had never spoken to the medical team
about their brother’s or sister’s illness.
For the children who had this discussion with providers, the significant
negative correlation with their externalizing behaviors suggests those children may have benefitted from the
discussion. This is supported by the
earlier work of several authors who
have suggested well children want
information about their sick sibling’s
illness and may benefit from discussion (Fleitas, 2000; Havermans &
Eiser, 1994; Williams et.al., 1997).
Limitations
This cross-sectional study was
based on a convenience sample of
participants whose children with cystic fibrosis were in generally good
health and attended outpatient clinics during the data collection period.
This limits generalizability of the
results. Families who participated
may have differed from those that
refused or did not attend clinic.
Issues, such as blended families, parents with psychological problems,
and support systems for the children
other than their parents, were not
explored and could have impacted
the results. All that can be concluded
is that there is an association among
290
certain variables in this sample of parents and siblings of children with cystic fibrosis.
Implications for Research and
Nursing Practice
Although more research is needed
with larger samples, preliminary
implications can be identified. Further
investigation may assist in the development of specific interventions
designed to provide information to
the well sibling, address communication and priority setting, and foster
decision-making and coping skills to
assist these families in promoting the
well-being of all family members.
Asking families what is needed is crucial to the success of any intervention.
Children diagnosed with chronic
disease have an impact on their well
siblings. The needs of well siblings
may be overlooked, which can place
them at risk for successful adaptation
to their environment. Nurses can be
instrumental in providing support to
these children and advocating for
their needs. Parental stress and social
support should be part of the multidisciplinary assessment. In parents
with increased stress and lack of support, either emotional or financial,
additional resources may be needed
which may also indirectly support the
siblings. Early identification of problems may assist the family with overcoming obstacles and promote a
higher quality of mental as well as
physical health.
Advances in the treatment of cystic
fibrosis have led to increased longevity for these patients. Well siblings
may have additional concerns
extending into adulthood as their
brother or sister with cystic fibrosis
becomes more ill, and they may need
additional support and care. A longterm goal is to provide theory-based
interventions designed to support
decision making and provide
resources for families who live the
reality of caring for their child with
cystic fibrosis.
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