Bullying and Mental Health Amongst Australian Children and Young People With Cystic Fibrosis

Abstract

Currently, there is little research investigating how schools can support the mental health and social development of young people with cystic fibrosis (CF), given their heightened risk of mental illness. Few studies have examined the relationship between bullying and mental health in populations of children with CF. This study describes the peer bullying experiences of young people with CF, and examines associations between school bullying and the psychological well-being of these young people. A sequential mixed-methods approach was used to collect data from 26 young people with CF (10−16 years of age). These data were compared with large samples of healthy children. Following an online survey, 11 young people, through online focus groups, expanded on the survey findings, describing their experiences within the school environment. Young people with CF reported lower involvement in bullying victimization and perpetration relative to the comparison population. For older adolescents with CF, victimization was associated with less connectedness to school and less peer support, and more school loneliness, anxiety, and depression. Young people with CF reported they generally liked the school environment, and were happy with their friendships, whereas some older adolescents reported that bullying evoked anxiety and mood problems. Reported bullying was primarily verbal and targeted characteristics of their CF, including their coughing, noninvolvement in certain activities because of shortness of breath, use of medication, and being underweight (for boys only). The findings provide some recommendations for interventions to promote mental health and school engagement among young people with CF.

Full text

Bullying and Mental Health Amongst Australian
Children and Young People With Cystic Fibrosis
Cindy Branch-Smith, Therése Shaw,
Ashleigh Lin, and Kevin Runions
Telethon Kids Institute, Western Australia
Donald Payne
Telethon Kids Institute, Western Australia; Perth
Children’s Hospital, Western Australia
Rebecca Nguyen
Telethon Kids Institute, Western Australia Heather Hugo and Liz Balding
Perth Children’s Hospital, Western Australia
Donna Cross
Telethon Kids Institute, Western Australia, University of Western Australia
Currently, there is little research investigating how schools can support the mental health and
social development of young people with cystic fibrosis (CF), given their heightened risk of
mental illness. Few studies have examined the relationship between bullying and mental health
in populations of children with CF. This study describes the peer bullying experiences of young
people with CF, and examines associations between school bullying and the psychological
well-being of these young people. A sequential mixed-methods approach was used to collect data
from 26 young people with CF (10⫺16 years of age). These data were compared with large
samples of healthy children. Following an online survey, 11 young people, through online focus
groups, expanded on the survey findings, describing their experiences within the school envi-
ronment. Young people with CF reported lower involvement in bullying victimization and
perpetration relative to the comparison population. For older adolescents with CF, victimization
was associated with less connectedness to school and less peer support, and more school
loneliness, anxiety, and depression. Young people with CF reported they generally liked the
school environment, and were happy with their friendships, whereas some older adolescents
reported that bullying evoked anxiety and mood problems. Reported bullying was primarily
verbal and targeted characteristics of their CF, including their coughing, noninvolvement in
certain activities because of shortness of breath, use of medication, and being underweight (for
boys only). The findings provide some recommendations for interventions to promote mental
health and school engagement among young people with CF.
Public Policy Relevance Statement
Bullying at school is a significant issue among children and young people living with chronic
conditions. Findings from our small study suggest students with cystic fibrosis may not be bullied
often, but older students who were bullied experienced feelings of loneliness, depression and
anxiety. Therefore, it is important that policymakers incorporate mechanisms to prevent, or at
least mitigate, bullying behaviors for children and young people living with chronic conditions.
Cindy Branch-Smith, Therése Shaw, Ashleigh Lin, and Kevin Runions, Pop-
ulation Sciences, Telethon Kids Institute; Donald Payne, Population Sciences,
Telethon Kids Institute, Western Australia; Perth Children’s Hospital, Western
Australia; Rebecca Nguyen, Population Sciences, Telethon Kids Institute; Heather
Hugo and Liz Balding, Perth Children’s Hospital, Western Australia; Donna
Cross, Population Sciences Telethon Kids Institute; School of Medicine, Dentistry
and Health Sciences, University of Western Australia.
Correspondence concerning this article should be addressed to Cindy
Branch-Smith, Population Sciences, Telethon Kids Institute. E-mail:
cindy.branch-smith@telethonkids.org.au
This document is copyrighted by the American Psychological Association or one of its allied publishers.
This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
American Journal of Orthopsychiatry
© 2018 Global Alliance for Behavioral Health and Social Justice 2018, Vol. 88, No. 4, 402–412
http://dx.doi.org/10.1037/ort0000289
402

In Australia, 37% of young people under the age of 15 years
live with a long-term health condition (National Health Sur-
vey; Australian Bureau of Statistics [ABS], 2012). These
conditions place substantial demands on the individual and their
family in terms of stress, time, energy, and resources (Jessop &
Stein, 1989). Although most will require lifelong medical care
(Jessop & Stein, 1989), with appropriate management, many
young people with chronic conditions function well and live
largely productive lives (Australian Institute of Health and Wel-
fare, 2005).
CF is a complex chronic condition which imposes an enormous
burden on the individual through intensive daily treatment, phys-
ical restrictions, and the psychosocial morbidity associated with
intractable health decline and early mortality. CF causes the pro-
duction of abnormally thick mucus, leading to the blockage of the
pancreatic ducts, intestines, and bronchi and often resulting in
respiratory infection (Davis, 2006;Rowntree & Harris, 2003). As
the disease progresses, overt symptoms of CF may start to occur;
for example, frequent lung infections, coughing, and wheezing
(Davis, 2006). Prevalence data suggests over 1,600 Australian
people under 17 years of age live with CF (Cystic Fibrosis Aus-
tralia, 2014).
Significant progress in understanding early mechanisms of lung
disease (Brennan, Gangell, Wainwright, & Sly, 2008;Stick et al.,
2009) has driven gains in life expectancy over the past few
decades, such that life expectancy of CF patients has increased
from 5– 6 years of age in 1960 to a median survival age of
approximately 40 years now (United Kingdom Cystic Fibrosis
Registry, 2012). Because of this, research and clinical care has
shifted from simply improving physiological outcomes toward the
more complex interplay among behavioral, psychosocial, and
health outcomes (Barker & Quittner, 2010).
Mental Health in Young People With CF
The demands of managing CF may negatively impact other
aspects of the lives of young people. Two particular aspects of CF
care are important in understanding how having CF impacts on
everyday life and why treatment and infections can impact upon
social relationships. First, treatment management occurs primarily
in the home and can take up to two hours per day, which is
considered demanding and time consuming (Badlan, 2006). There-
fore, treatment burden is commonly reported among young people,
which can include stress and anxiety associated with treatment
administration (Casier et al., 2008). Second, young people find it
difficult to obtain peer support from other young people with CF
because they should not have close contact with each other due to
issues of cross-infection (Bell, Robinson, & Fitzgerald, 2008).
Multiple hospitalizations and treatments, and the resultant side
effects (Strawhacker & Wellendorf, 2004;Thies, 1999), can lead
to more school absences, as well as decreased engagement with
schools, and hence teachers and peers (Coyne, 2008). Absences
have adverse effects on educational attainment for young people
with CF (Grieve et al., 2011;Thompson, Gustafson, Hamlett, &
Spock, 1992). Other difficulties include lifestyle restrictions, lim-
ited independence, and social isolation (Jamieson et al., 2014).
These experiences may contribute to increased risk of poor psy-
chosocial outcomes. Behavior problems, anxiety, depression, bul-
lying, social isolation, relationship issues, and low self-esteem
have been reported (Goldbeck, Quittner, & Besier, 2008;Quittner
et al., 2008;Smith, Modi, Quittner, & Wood, 2010). One large
study demonstrated elevated levels of depression (10%) and anx-
iety (22%) in young people with CF (Quittner et al., 2014), and
lower rates of general well-being than young people in the general
population have also been reported (Szyndler, Towns, van As-
peren, & McKay, 2005).
The School as a Locus of Mental Health for
Young People With CF
Schools are a key setting for the establishment and maintenance
of positive social relationships and friendships and, consequently,
may serve to promote mental health or to aggravate psychological
difficulties. For children with CF, having good friendships is
associated with an increased quality of life (Helms, Dellon, &
Prinstein, 2015). For young people with CF, friendships can act as
a distraction from their condition and improve their self-esteem
(MacDonald & Greggans, 2010), and also provide a source of
support, protecting against loneliness (Christian & D’Auria, 1997;
Graetz et al., 2000).
Schools can expose vulnerable children to negative social ex-
periences and thus present risks for mental health (van Geel,
Vedder, & Tanilon, 2014). The medical challenges of CF pose a
risk which may lead to social difficulties at school. For example,
frequent and intensive hospital visits can contribute to psycholog-
ical and behavioral difficulties (Boyd & Hunsberger, 1998;Pao &
Bosk, 2011). Infection control may also create barriers to social
interaction (Quittner, Abbott, et al., 2016) with parents of children
with CF often concerned about the risk of their child with CF
becoming unwell from participating in social activities. Similarly,
parents often worry about their child’s health in relation to other
people’s hygienic practices and, as a result, keep them segregated
from other children (Branch-Smith, 2016).
The overt symptoms of CF may also present social challenges.
Frequent coughing may lead peers to believe the person is conta-
gious; symptoms such as flatulence may be stigmatizing. Stigma
associated with having a chronic condition such as CF has been
associated with anxiety, depression, and low optimism (Oliver et
al., 2014;Pakhale et al., 2014).
Being perceived as “different” places children at increased risk
of being targets of bullying, which may lead to a wide range of
social, academic, psychological, and physical health outcomes
(Gini & Pozzoli, 2009;Hawker & Boulton, 2000;van Dam et al.,
2012;van Geel et al., 2014). In general, health conditions which
limit participation in school activities and which have overt symp-
toms may increase the risk of victimization (Hamiwka et al., 2009;
Sentenac et al., 2012). However, findings specific to bullying of
children and youth with CF are mixed. Pittet, Berchtold, Akré,
Michaud, and Surís (2010) report that young people with CF are
more likely than healthy controls to be victims of bullying, and to
be victims of two or three forms of bullying. In contrast, others
have found that children with CF were the exception among
cohorts with chronic conditions and were not at elevated risk of
overt direct or overt relational bullying (Twyman et al., 2010),
even though they were likely to experience ostracism, which can
be interpreted as a form of bullying. Given that indirect and covert
bullying (e.g., spreading rumors and social exclusion) become
more prevalent than direct overt bullying (e.g., hitting or insulting
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403
BULLYING AND MENTAL HEALTH IN CF

others) in high school (Yeager, Fong, Lee, & Espelage, 2015),
further research needs to be sensitive to the age group being
studied.
Negative school experiences for young people with CF, such as
being teased and socially isolated, can exacerbate loneliness, di-
minish academic achievement, and increase the risk of mental
health problems (Cohen, Ribeiro, Ribeiro, Ribeiro, & Morcillo,
2011;D’Auria, Christian, & Richardson, 1997;Kianifar, Bakhs-
hoodeh, Hebrani, & Behdani, 2013;Pittet et al., 2010;Quittner,
Saez-Flores, & Barton, 2016). Limited empirical data suggests that
ostracism may extract a greater toll on young people with CF when
compared with healthy controls (Twyman et al., 2010). Addition-
ally, social isolation has been found to increase the risk of depres-
sion by 2–3 times among young people with CF compared with
community samples (Cruz, Marciel, Quittner, & Schechter, 2009;
Goldbeck, Besier, Hinz, Singer, & Quittner, 2010).
The Current Study
Many health professionals working with young people who
have CF report significant improvements in the child’s individual
health outcomes following positive changes to the child’s family
or social environment (Gupta, Urquhart, & Rosenthal, 2009).
These clinical observations reflect a longstanding recognition that
extrinsic factors within the young person’s psychosocial environ-
ment may contribute to disease progression and severity (Lee,
2005;Mackenbach et al., 2008;Muller-Nix et al., 2004). There-
fore, improving the psychological well-being and the social envi-
ronment of young people living with CF, specifically within the
school context, is likely to positively influence both mental and
physical health outcomes.
Whereas research-driven efforts to support young people with
CF in the school environment have been limited, increasing evi-
dence suggests the school context could be beneficial, buffering
the mental health risks faced by students with CF, or, harmful if
they have negative experiences. Therefore, to support young peo-
ple with CF, their relevant school experiences need to be charac-
terized and assessed to determine how best to intervene, given that
improving their mental health appears to enhance their immediate
and long-term health. The mixed victimization findings among
students with CF may be due, in part, to instrumentation that does
not consider the full range of bullying behaviors—including more
subtle modes of covert bullying, and changes over time in the
nature of bullying, which normatively becomes more covert as
students transition to high school.
In Australia, students transition after Grade 6 from typically
smaller primary schools (where children mostly remain within
intact classes with the same peer group and teacher) to larger high
schools (where they move during the day between classes com-
prising different peers and teachers). As student experiences differ
between these two contexts, this study assessed the bullying and
mental health outcomes for both primary and high school students.
Broadly, this study provides a cross-sectional quantitative profile
of the school experiences, including bullying involvement, and the
psychosocial status of children and young people with CF to
determine their psychological needs and outcomes. Further, these
data were used to inform a series of focus group discussions where
young people with CF reflected and expanded on the survey
findings, providing a detailed picture of their psychosocial expe-
riences, needs, strengths, and motivations within the school
environment.
Method
Study Design and Sampling
Ethics approval was granted by the participating pediatric hos-
pital for this study: Version 5, Developing an Innovative Online
Intervention to Support Schooling for Children and Young People
with Cystic Fibrosis. All children with CF aged between 10 and 16
years within an Australian state who were registered at this major
pediatric hospital were invited to take part in the study. An
information letter and consent form were sent to these families to
seek assent from the young person and consent from a parent. All
young people who took part in the study were seen during their
clinic visits over a 3-month time period and invited to complete an
online survey and to participate in online focus groups (so-called
E-summits). Participants who provided consent completed the
surveys at the clinic in a quiet area. On average, the surveys took
young people 27 min to complete. E-Summits were conducted to
enable young people with CF, who are at risk of cross-infection in
face-to-face meetings, to interact with each other in real time (Bell
et al., 2008). The E-summits were conducted with 11 young people
using Skype as a communication medium. Each was facilitated by
research personnel, and lasted approximately one hour.
Participants
Of the 26 young people aged between 10 and 16 years of age
who completed the survey, 15 (57.7%) were girls, and all but one
spoke mostly English at home. The response rate was 47.2%, (n⫽
55 approached to participate, which is the total number of young
people within this age range with CF from the chosen Australian
state). Eight participants were in primary school (Grades 5 and 6)
and the remaining 17 attended in high school. The parent-reported
lung function of the sampled young people was within the normal
range, that is, with all but one forced expiratory volume (FEV)
1
percent predicted score above 80% (M⫽93.0; SD ⫽6.09). Nine
participants (32.1%) had not been hospitalized in the previous 12
months, however 11 (39.3%) had been hospitalized once and eight
(28.6%) had been in hospital two or three times. Nine participants
were in Grades 5– 6, eight were in Grades 7– 8, and nine in Grades
9 –10 (note that primary school ends at Grade 6 in Australia). Four
boys and seven girls participated in the E-summits (Grades 6 –10).
Measures
Bullying and victimization. We used the Revised Ol-
weus Bully/Victim Questionnaire (OBVQ) for students aged
10 –11 years. The scale includes five items to assess different
forms of bullying victimization and 5 items for perpetration in the
previous “couple of months,” respectively. Each item has five
response options ranging from This didn’t happen to me to Several
times a week. The scale is widely used to assess bullying experi-
ences in children aged 9 –12 years (Olweus, 1996), and the validity
of responses has been shown across this age range (e.g., Kyriak-
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404 BRANCH-SMITH ET AL.

ides, Kaloyirou, & Lindsay, 2006). Mean scores were calculated
(range 1–5) and dichotomized, where an M⫽1 indicated no
involvement, and greater than one indicated involvement in bul-
lying victimization/perpetration.
For the older sample (12–16 years), we used the Forms of
Bullying Scale (FBS). This scale has two 10-item subscales to
assess frequency of involvement in the different forms of bullying
victimization and perpetration, including the more indirect forms
which emerge and become more prevalent with age (Shaw,
Dooley, Cross, Zubrick, & Waters, 2013). Construct, concurrent,
convergent, and divergent validity have been demonstrated for
Australian adolescents (12–15 years; Shaw et al., 2013). Five
response options range from This did not happen to me to Several
times a week. Mean scores were calculated for each subscale and
dichotomized as described above.
School connectedness. To assess perceived school be-
longing, the Add Health School Connectedness Scale was used.
This five-item Likert scale (Strongly agree to Strongly disagree)
measured the extent to which students feel connected to their
school. The scale had acceptable reliability (␣⫽.82 to .88) and
concurrent validity (r⫽.44 to .55) across 18 sociocultural groups
(Furlong, O’Brennan, & You, 2011). Mean scores were used.
Loneliness. The Cassidy and Asher (1992) scale was
adapted to measure perceptions of loneliness and ability to make
social connections at school. The seven items (e.g., “I don’t have
anyone to spend time with at school”) each have five Likert
agreement response options. Mean scores were calculated with
higher scores corresponding to greater feelings of loneliness at
school. Cronbach’s alpha for this measure was satisfactory (0.79;
Cassidy & Asher, 1992).
Peer support. The Perceptions of Peer Support Scale is an
11-item scale adapted from the 24-item Perceptions of Peer Social
Support Scale (Ladd, Kochenderfer, & Coleman, 1996). Items ask
how often students in their year level would “Like to work with
you in their group at school?” and “Ask you to join in when you
are alone?” Response options are Lots of times,Sometimes, and
Never. The items are reverse coded, and a mean score calculated,
with higher scores reflecting greater perceptions of support by
peers (Cronbach’s alpha ⫽.86; Ladd et al., 1996).
Mental health (outcome measures). Participants
completed the General Anxiety Disorder for Adolescents
(GAD-7; Spitzer, Kroenke, Williams, & Löwe, 2006) and the
Patient Health Questionnaire-9-A (PHQ-9-A; Quittner et al.,
2014;Spitzer, Kroenke, & Williams, 1999). GAD-7 comprises
seven items measuring anxiety symptoms with response options
not at all,several days,more than half the days, and nearly
every day (scored 0 –3, respectively; total score range 0 –21).
Scores of 5, 10, and 15 represent cut points for mild, moderate,
and severe anxiety, respectively. The measure has good reli-
ability, as well as criterion, construct, factorial, and procedural
validity (Quittner et al., 2014). The PHQ-9-A is a brief measure
of depression in adolescents, with response options not at all,
several days,more than half the days, and nearly every day. The
PHQ-9-A total score for the nine items ranges from 0 to 27.
Cutoff points of 5, 10, and 15 represent mild, moderate, and
severe levels of depressive symptoms, respectively.
Physical health. FEV
1
percent predicted is a measure of
pulmonary obstruction, and is the current gold standard clinical
marker for CF disease progression (Swanney et al., 2008).
Data Analyses
In light of the small sample size, multivariate statistical analyses
were not feasible and therefore univariate tests were conducted.
Descriptive statistics, significance tests, and Spearman correlation
coefficients (due to the skewed distributions for the bullying
variables) were calculated using SPSS Statistics Version 23. Sum-
mary statistics were calculated for the psychological and school-
related outcomes and tested using ttests and chi-square tests
against data from two large comparison studies. The two samples
were chosen as they are largely representative of the population
from which the CF sample was recruited and, hence, provided
population-based data on bullying outcomes for comparison with
those of the students with CF. Furthermore, these studies utilized
the same measures of bullying victimization and perpetration
(namely the OBVQ and FBS, respectively) eliminating the poten-
tial for observed discrepancies due to methodological differences
in the measurement of bullying. One of these comparative studies
was conducted in primary schools and the other in high schools in
the same Australian state as this study. Comparison Sample 1
comprised 1,730 students in Grades 3– 4 (aged 8 –10 years) in 36
primary schools recruited to the PAVE Project (Macquarie Uni-
versity, Telethon Kids Institute, & The University of Western
Australia, 2015). Comparison Sample 2 participated in the Beyond
Bullying study (Cross, Runions, & Shaw, 2015) conducted in 12
high schools with surveys completed by 1,936 students in Grades
7–9 (aged 11–15 years). The primary school comparison sample
was slightly younger than the CF sample, but the high school
sample was of comparable age range.
Braun and Clarke’s (2006) six-step guidelines to thematic anal-
ysis were used for qualitative analysis using the NVivo computer
package (NVivo, 2014). These steps include: familiarization with
data, generating initial codes, searching for themes among codes,
reviewing themes, defining and naming themes, and producing the
final report. The primary objective of this process of analyses was
to ensure an exhaustive and systematic analysis of the qualitative
data collected in the E-Summits. Scientific rigor of the study was
maintained through audibility, credibility, and fittingness (Bean-
land, Schneider, LoBiondo-Wood, & Haber, 1999). Reliability was
ensured through consistency with which instances were assigned
to the same category on different occasions to resolve discrepan-
cies (Silverman, 2000). An experienced qualitative researcher con-
ducted the processes of interpretation to conclude with emergent
themes. Throughout the analyses, an audit trail (Charmaz, 2000)
was used to enhance scientific rigor by ensuring interpretation
followed a logical and conclusive path. The audit trail was con-
ducted by an associate investigator who was required to determine
the quality of the research process to identify whether logical
decisions were made throughout the research process (Liamput-
tong, 2009).
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405
BULLYING AND MENTAL HEALTH IN CF

Results
Bullying, Victimization, and CF
Three quarters (75%) of the children with CF in primary schools
reported they were not bullied at all in the 2 months prior to the
survey (Table 1), whereas in our comparison sample, only 30% of
primary school students reported they experienced no bullying
(␹
2
(1) ⫽7.8, p⫽.005, odds ratio [OR]⫽7.1). This difference
was not observed in our high school sample where most of the
students with CF reported experiencing some degree of bullying
victimization in the previous 10 weeks at school (71%). This was
statistically equivalent to the high school comparison sample (71%
vs. 75% involved, ␹
2
(1) ⫽0.1, p⫽.700, OR ⫽1.2).
The two primary schoolchildren with CF who reported experi-
encing some bullying indicated this occurred only once or twice
during the past 2 months and that the bullying was verbally
abusive (name calling, being made fun of) and excluded them
socially (being left out on purpose, having to be alone at break
times), but not physical bullying. The forms of bullying most
experienced by the older students were name calling (n⫽10,
58.8%) and nasty teasing (n⫽9, 52.9%), while 23.5% (n⫽4)
were deliberately excluded, made afraid by threats of harm, or had
secrets told about them to hurt them. Mostly the bullying occurred
1–2 times in the previous 10 weeks at school, except for the two
most common forms of verbal bullying, which happened more
often for about half of those bullied (5– 6 young people; detailed
statistics on the forms of bullying are available from Therese
Shaw). Only one child with CF in the primary school group
reported any perpetration of bullying, and four high school stu-
dents with CF (23.5%) indicated they perpetrated bullying. These
percentages were similar in the CF and comparison sample for the
primary schoolchildren (␹
2
(1) ⫽0.8, p⫽.383, OR ⫽2.5), but
perpetration of bullying behaviors was significantly less common
among the older students with CF (a threefold higher odds of
noninvolvement) than in the community sample (␹
2
(1) ⫽4.5, p⫽
.033, OR ⫽3.2). As with bullying victimization, verbal aggression
was most common, with three to four young people perpetrating
this behavior.
Mental Health and School-Related Variables
Most participants reported mental health scores within the min-
imal or mild ranges on the mental health scales (Table 2). Only
three participants (11.5%) were in the moderate or borderline
range for depression and anxiety (and none in the severe range).
This percentage of students with CF experiencing depression is
similar to that observed in a recent school study (11.9% of 182
students aged 11–16 years; Allison, Nativio, Mitchell, Ren, &
Yuhasz, 2014).
The primary school students with CF did not report feeling
particularly lonely at school (M⫽1.94, SD ⫽0.95, range 1–5) and
also reported high levels of peer support (M⫽2.46, SD ⫽0.42,
range 1–3). While only comparison data on loneliness and con-
nectedness to school were available for the high school compari-
son sample, the levels of peer support among the secondary stu-
dents with CF (M⫽2.52, SD ⫽0.429, range 1–3) were similar to
the levels found in the comparison sample (M⫽2.35, SD ⫽0.534;
t(1867) ⫽⫺1.31, p⫽.191, d⫽0.35). However, the secondary
students with CF reported feeling significantly less connected to
their school (M⫽2.79, SD ⫽0.798, range 1–5) than students in
the comparison sample (M⫽3.81, SD ⫽0.898; t(1872) ⫽⫺4.67,
p⬍.001, d⫽1.04).
Association of Bullying and Mental Health
and School Outcomes
For high school students with CF, involvement in bullying
victimization and perpetration was highly correlated with symp-
toms of depression and anxiety, and loneliness at school (Table 3).
Level of victimization was also correlated with lower levels of
connectedness to school, and reduced peer support at school. Due
to the small sample and the small numbers of students with CF
involved in bullying, it was not possible to assess the correlations
between bullying and socioemotional outcomes for the primary-
school sample.
Table 1. Descriptive Statistics for Bullying Involvement
Bulling involvement
CF sample
(Grades5&6)
(N⫽8
a
)
Comparison Sample 1
(Grades3&4)
(N⫽1,699)
CF sample
(Grades 7–10)
(N⫽17)
Comparison Sample 2
(Grades 7–9)
(N⫽1,923)
Victimization (1–5)
Uninvolved 6 (75.0%) 503 (29.6%) 5 (29.4%) 487 (25.3%)
Involved 2 (25.0%) 1,196 (70.4%) 12 (70.6%) 1,436 (74.7%)
M(SD) 1.10 (.185) 1.41 (.419) 1.41 (.496) 1.52 (.681)
Median (IQR) 1.0 (.30) 1.0 (.60) 1.2 (.84) 1.3 (.70)
(N⫽8
a
)(N⫽1,697) (N⫽17) (N⫽1,919)
Perpetration (1–5)
Uninvolved 7 (87.5%) 1,255 (74.0%) 13 (76.5%) 969 (50.5%)
Involved 1 (12.5%) 442 (26.0%) 4 (23.5%) 950 (49.5%)
M(SD) 1.23 (.636) 1.09 (.191) 1.12 (.323) 1.17 (.382)
Median (IQR) 1.0 (.00) 1.0 (.20) 1.0 (.05) 1.0 (.20)
Note. IQR ⫽interquartile range.
a
Missing data for one child.
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406 BRANCH-SMITH ET AL.

E-summits: Qualitative Findings on the School
Experiences of Students With CF
Three major themes with related subthemes representing the
emergent structure resulting from the E-summits are presented in
the Table 4. These describe experiences of bullying and peer
victimization, and their associations with psychological well-being
and school-related outcomes.
School connectedness. Young people in the study gen-
erally liked their school, were happy at school, and happy with
their peer relationships. For instance, a 14-year-old boy spoke
about the perceived benefits: “I feel very grateful to be part of a
great school and to have genuine friends that care about me.”
Young people highlighted benefits gained from these relationships
as integral to favorable psychological outcomes. For example, an
11-year-old male described how he felt when he was with his
friends at school: “I feel like any other normal kid when I’m with
my friends. My friends are good at making me feel like everyone
else.”
However, negative school experiences, primarily expressed by
young people in high school, may have contributed to unfavorable
psychological outcomes: “I didn’t see much bullying happen in
primary school but you see it a lot more as you get into high school
. . . mainly name-calling and teasing about being different for
whatever reasons” (15 years; male). This theme suggests that being
a young person with CF at school is primarily, but not wholly, a
positive experience.
Being “sick” at school. Some young people were teased
about taking medication or coughing a lot at school, because
although they disclosed their diagnosis to close friends, they did
not tell all of their class or school mates:
My close friends at school know I have CF, I told them, but you
kind-of do not want everyone to know. Sometimes the kids that do not
know will tease me for coughing...myfriends do stick up for me
though, which is good. (13 years; male)
Further, young people in the study experienced being left out of
group activities because other young people saw them as “too
sick” to participate. The experience of being excluded is demon-
strated by a 13-year-old female: “well sometimes I might have a
bad cough, and that means that kids do not want to play with me
at recess or they will not pick me for their games and things like
that.” Another student stated: “I cannot run as far as the other girls.
When we get picked by each other for team sports, I’m always the
last one to get picked and sometimes I will get teased for always
being picked last” (15 years; girl).
Some older boys experienced bullying about being underweight,
as CF can lead to malnutrition due to the young person’s body
having difficulty absorbing fats (Zielenski, 2000):
There are some school bullies who like to tease whoever they can for
whatever dumb reasons they can find. I’m skinnier than most guys in my
year and they tease me for that...Igetnervous when I see them in the
school yard and my mates are usually too scared to back me up around
them. Which I do not blame them, they are big guys. (15 years; boy)
Table 2. Descriptive Statistics for Mental Health and School-Related Variables
Mental health and
school experiences
Grades5&6
(N⫽9)
Grades 7–10
(N⫽17)
Total
(N⫽26)
Depression
M(SD) 4.33 (3.000) 4.59 (3.792) 4.50 (3.479)
None-minimal symptoms, N(%) 5 (55.6) 9 (52.9) 14 (53.8)
Mild symptoms, N(%) 3 (33.3) 6 (35.3) 9 (34.6)
Moderate symptoms, N(%) 1 (11.1) 2 (11.8) 3 (11.5)
Anxiety
M(SD) 3.89 (3.723) 3.29 (3.619) 3.50 (3.592)
None-minimal symptoms, N(%) 7 (77.8) 12 (70.6) 19 (73.1)
Mild symptoms, N(%) 1 (11.1) 3 (17.6) 4 (15.4)
Moderate symptoms, N(%) 1 (11.1) 2 (11.8) 3 (11.5)
School connectedness (1–5) 3.16 (.805) 2.79 (.798) 2.92 (.804)
Peer support (1–3) 2.35 (.387) 2.52 (.429) 2.46 (.415)
Loneliness at school (1–5) 1.63 (.780) 2.10 (1.006) 1.94 (.945)
Table 3. Spearman Correlations for Bullying Involvement and
Mental Health and School-Related Variables
Mental health and
school experiences
Grades 7–10 (N⫽17)
Bullying victimization Pullying perpetration
Depression .774
ⴱⴱ
.493
ⴱ
Anxiety .693
ⴱⴱ
.537
ⴱ
School connectedness ⫺.698
ⴱⴱ
⫺.369
Peer support ⫺.734
ⴱⴱ
⫺.450
Loneliness at school .824
ⴱⴱ
.594
ⴱ
ⴱ
p⬍.05.
ⴱⴱ
p⬍.01.
Table 4. Themes and Related Subthemes From the E-Summits
Theme Exemplar
School connectedness I feel very grateful to be part of a great school
Being “sick” at school I’m always the last one to get picked and
sometimes I will get teased for always
being picked last
Missing school I miss my friends when I’m not at school
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407
BULLYING AND MENTAL HEALTH IN CF

This can have psychological ramifications because the same boy
stated:
I can feel sad and lonely when I get teased for being different, but I
do not let anyone know how I’m feeling cos I do not want them to
know that they have succeeded in making me feel bad.
Bullying may have other effects on school-related outcomes,
including liking school and attendance: “sometimes I do not want
to go to school because I do not feel like I belong there, and
sometimes I do not even like school at all, especially if I’m being
teased a lot for being sick” (11 years; boy).
Missing school. The last theme directs attention toward
young people’s experiences of being absent from school for
health-related reasons, as well as their attempts to integrate back
into school after extended periods of absence. The most common
circumstance was being unable to spend time with their friends
because they were in hospital, or their parents did not want them
to see their friends for fear of infection. A 15-year-old boy de-
scribed how he missed the connection he had with his school:
I miss my friends when I’m not at school, and I want to know what
is going on at school...Skyping into class would be good so that I
can stay connected with my friends and also with my class stuff.
This absence engenders a sense of disconnection: “If I could
hook up to my friends and class when I’m away, I would find it
easier to stay linked to everyone and then I wouldn’t feel left out
when I came back” (14 years; girl).
Lastly, young people in the study described how they attempted
to integrate back into school after extended periods of absence.
They spoke about changes in social circumstances that had oc-
curred during their absence. A 13-year-old female illustrated this
experience:
when go back to school after hospital, there can be a shift in who is
friends with who...Itcantake me a while to work it all out, which
leaves me feeling a bit left out of what has happened.
Discussion
This research sought to describe experiences of school bullying
victimization and related social experiences of young students with
CF and to examine associations with psychological well-being.
Overall, the young people with CF in our study were healthy and
happy and, for the most part, described being at school as a
positive experience. They expressed high levels of peer support
and connection to school overall. Most felt comfortable disclosing
their diagnosis to close friends, and they generally did not feel
lonely at school.
Although the majority of primary school-aged students with CF
reported they were not bullied, nor bullied others, those in sec-
ondary school reported their exposure to bullying increased fol-
lowing the transition to high school. Similar results from compar-
ison (non-CF) community samples suggest that, for adolescents,
being bullied is not unique to young people with chronic illness.
However, the high school-aged young people with CF described
how they were bullied primarily about aspects of having CF. This
included name calling and teasing, as previously reported by
Barker, Driscoll, Modi, Light, & Quittner, (2012), and being left
out of activities because of their CF symptoms (as also described
in Sentenac et al., 2012) and among boys, sometimes about their
low weight. Similar to other research, knowledge of their CF
sometimes resulted in the young people being deliberately left out
of social activities or being left alone, being perceived as different,
and even being bullied simply for having CF (Barker et al., 2012;
Hamiwka et al., 2009;Jessup & Parkinson, 2010;Pittet et al.,
2010;Twyman et al., 2010).
Experiencing verbal bullying has previously been linked to
depression, anxiety, and loneliness at school (Oliver et al., 2014;
Pakhale et al., 2014). Similar to other research (Cohen et al., 2011;
D’Auria et al., 1997;Kianifar et al., 2013), our findings demon-
strated that bullying victimization was associated not only with
increased loneliness, feelings of disconnection from school, and
less peer support, but also increased depression and anxiety. This
is especially important as depression and anxiety are important in
the pathogenesis of CF disease (Moraru et al., 2015), and may
impact adversely upon lung function (Fidika, Herle, & Goldbeck,
2014), an important clinical marker for disease progression in CF.
Further, being bullied about aspects of CF may increase anxiety
levels and affect school relationships, further impacting on the
young person’s mental health. Therefore, addressing psychopatho-
logical problems is important for mental health and well-being, as
well as long-term physical health.
Apart from experiences while at school, absence from school led
to feelings of disconnection from school and difficulties integrat-
ing back into the school environment. The finding that the high
school students with CF felt less connected to school than the
comparison community sample yet experienced comparable levels
of victimization may be because as young people with CF grow
older, they are more likely to be absent from school due to disease
progression. Therefore, our research, along with others (e.g.,
Coyne, 2008;Pakhale et al., 2014), highlights that as young people
with CF get older and their disease begins to progress, adverse
school experiences and increased absence can contribute to feel-
ings of disconnection from school. Consequently, increasingly
missing school and heightened bullying may lead to more adverse
outcomes for young people with CF (both mental health and
school-related) as a function of age and disease progression.
Similar to Coyne (2008), being unable to communicate with
friends and class colleagues during their absence from school
resulted in missed social interactions and may affect their overall
connection to school. Further, young people with CF can have
fewer social interactions and are thus at heightened risk of being
socially isolated and victimized (Pittet et al., 2010;Quittner, Saez-
Flores, et al., 2016).
Despite feeling less connected to school than the comparison
sample, in general, the young people with CF attending high
school experienced high levels of peer support and were not lonely
at school. Nevertheless, the older students with CF who experi-
enced victimization felt less supported by their peers and less
connected to school. Being deliberately left out of social activities
or being left alone at recess, being perceived as different, and even
being teased for having CF were more apparent for the secondary
school group. Similar to other studies, these factors, together with
the fact that high schools are larger, more dynamic environments
than primary schools and their likely absences from school due to
ill health, may help to explain why the older group of young people
in the current study experienced less connectedness to school than
the comparison group (Oliver et al., 2014;Pakhale et al., 2014).
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408 BRANCH-SMITH ET AL.

These findings indicate the potential adverse effects of bullying
on young people with CF for school experiences and on their
mental health. While the experience of bullying is negative and
friends can sometimes be unhelpful, having close friends can help
to protect against loneliness and emotional distress, and help to
improve self-esteem in the face of peer victimization (Barker et al.,
2012;Christian & D’Auria, 1997;Graetz et al., 2000;Helms et al.,
2015;MacDonald & Greggans, 2010). Young people offered their
thoughts on how the sense of disconnection from friends and the
school more generally could be overcome (e.g., by Skyping in to
class activities), and described how staying connected during their
absence would make an easier transition when reengaging back
with friends.
Given the recruitment challenges resulting from the low prev-
alence of CF, the sample in this study is small, and the extrapo-
lation of findings to other population groups across different
clinical contexts and settings is limited. Additionally, the young
people who participated were relatively healthy physically and
may also be representative of a more motivated sample of young
people who were confident in discussing their experiences. Other
limitations of the study relate to the reliance on only self-report
measures of bullying involvement and mental health outcomes,
and the cross-sectional study design which inhibits causal infer-
ence. Additionally, differences in age reduce the comparability of
the comparison primary school sample and the sample with CF.
However, given that the comparison primary school sample were
younger in age and bullying tends to increase across the age groups
compared, the finding of less bullying victimization in the older
sample with CF is unlikely to be a consequence of the lack of
similarity in ages. While the comparison samples are broadly
representative of the population from which the students with CF
were drawn, we cannot discount the possibility that the observed
differences are due to other factors on which the samples differed.
The small sample size prohibited the use of multivariate analyses,
and hence couldn’t account for potential confounding effects.
Longitudinal information about characteristics of young people
with CF attending school who develop significant mental health
problems would also greatly enhance our understanding of tem-
poral relationships, which, in turn, would increase our understand-
ing of mechanisms to enhance outcomes for these young people.
We suggest that including information specific to vulnerable
groups in current antibullying programs would be beneficial.
While victimization is not unique to the CF population, the nature
of the bullying indicates these young people can be targeted
specifically because of their CF and disease symptoms. Given that
more than one quarter of young Australians under the age of 15
years live with a chronic condition (National Health Survey; ABS,
2012), the opportunity exists to investigate common ways to
reduce bullying victimization for young people across chronic
conditions. It is important to explore common areas that may be
addressed in antibullying programs that would be of benefit to
young people experiencing chronic illness, particularly those who
are absent from school frequently or for substantive periods due to
their conditions. This research also suggests the importance of
providing social and academic networking opportunities within
schools to mitigate the risk of social isolation that may arise from
hospitalizations that require students to miss school for extended
periods.
The school environment is important for the overall health and
well-being of students with CF. In Australia, CF clinical care
consists of a detailed annual review where a social worker is
generally part of a multidisciplinary CF team (Madge & Khair,
2000). The annual review could be an opportunity for the social
worker to incorporate evidence-based practice to address bullying
as young people transition from primary to high school through
assessment and education, or as an interface between discharge
from hospital and reintegration into school.
Although it is promising to report that the levels of anxiety and
depression were generally low for the young people in the current
study, the study sample was small and these low levels of depres-
sion and anxiety are in contrast to other studies (Cruz et al., 2009;
Goldbeck et al., 2008;Quittner et al., 2008,2014;Smith et al.,
2010). Therefore, identifying adverse psychological outcomes of
negative school experiences for young people living with chronic
illness (e.g., victimization and psychological risk factors) may be
critical to inform tailored programs and interventions to meet
specific needs and outcomes. Another recommendation, provided
by the young people in this study, is to allow young people who
miss substantial amounts of school due to their condition to remain
connected with their school through digital media. Young people
suggested this use of technology would enable them to stay con-
nected with their friends and peers during their absence.
School policymakers can use these findings to support young
people with CF, and chronic conditions, more generally, to under-
stand: the importance of relationships for young people who are
absent from school for extended periods and/or who may have
particular school experiences because of their condition; the un-
derlying mechanisms of victimization for young people with CF,
and chronic conditions, more generally; that friends can support
those who are bullied and can buffer against adverse mental health
outcomes resulting from bullying: and that friends can exacerbate
adverse mental health outcomes if they do not support, or do not
know how to support, young people who are bullied about their
chronic condition.
The information gained from this study could be used for
intervention development targeting the school-based social expe-
riences of young people living with chronic illness such as CF.
Further, these findings call for the inclusion of an educative
component for friends of young people with chronic conditions
addressing ways to support each other at school. Considering the
high proportion of young people living with chronic illness who
now regularly attend school due to clinical improvements in dis-
ease management and increased life expectancy, such interven-
tions could improve mental health for many school students.
Keywords: cystic fibrosis; adolescents; bullying; children; chronic
condition
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