Vol.1, No.3, 109-124 (2011)
opyright © 2011 SciRes. Openly accessible at http://www.scirp.org/journal/OJPM/
Open Journal of Preventive Medicine
“CF chatters”: the development of a theoretically
informed physical activity intervention for youth with
cystic fibrosis
Fiona Jasmine Moola1*, Guy Edward John Faulkner2, Jane Ellen Schneiderman3
1Simone de Beauvoir Institute, Concordia University; *Corresponding A uthor: fiona.moola@utoronto.ca
2Graduate Department of Exercise Sciences, The Univ e r s i t y of Toronto, Toronto, Canada;
3Department of Physiology and Experimental Medicine, Research Institute, The Hospital for Sick Children, Toronto, Canada.
Received 15 September 2011; revised 20 October 2011; accepted 31 October 2011.
Despite the benefits of physical activity for youth
living with cystic fibrosis (CF), the majority of
patients are insufficiently active to meet physical
activity recommendations. Existing physical acti-
vity interventions are atheoretical and tend to
prescribe standardized exercise regimes which
are often not appealing fo r children and compro-
mise long term adherence. Following recent calls
for counselling based physical activity approa-
ches in the CF population, this study describes
the development of a theoretically informed, pa-
rent-mediated, behavioural counselling interven-
tion for CF youthCF Chatters. We first a) de-
scribe the development of a grounded theory of
physical activity in youth with CF; b) explain how
this theory informed the development and im-
plementation of the CF Chatters program and c)
reflect on the findings of our pilot intervention
using a case study research design. CF Chatters
participants demonstrated self reported increa-
ses in physical activity and quality of life. While
further development and more robust objective
measures are needed to extend this investigative
pilot work, our findin gs suggest that beha vioural
counselling is an effective modality for enhanc-
ing physical activity participation and quality of
life in this life limited group of children and
Keywords: Cystic Fibrosis; Physical Activity;
Children and Youth; Behavioural Interve ntion
Development; Qualitative Research; Ca regivers
Cystic fibrosis (CF) is a fatal, autosomal recessive
genetic disease that affects approximately 1/2500 people.
Although CF is a multi-system condition that affects the
digestive and musculoskeletal systems, the primary
cause of death is respiratory failure [1,2]. Advances in
medicine are particularly evident in the case of CF and
the prognosis has dramatically improved. For the first
time in the history of CF care, the number of adults with
CF exceeds that of children, and the average life expec-
tancy is more than 38 years [3]. Physical therapy, aerosol
inhalers, nutritional supplementation, pharmacology, and,
in some cases, lung transplantation, comprise the back-
bone of CF treatment today. The objective of these pal-
liative treatments is to attenuate lung function decline
over time.
An improved prognosis and life expectancy, however,
has done little to alleviate the lingering psycho-social
burden of disease in CF [4]. Clinicians now encounter a
group of youth who are living longer lives; albeit, lives
that are compromised by significant morbidity and im-
paired quality of life. Patients with CF display high rates
of morbidity and reduced psych o-social health. They are
more likely to experience depression, anxiety, body im-
age concerns, occupational restrictions, reduced quality
of life, and poor treatment adherence [4]. In addition to
considering the physical health of this population, it is
important to develop interventions that enhance optimal
functioning and qua lity of life.
1.1. The Role of Physical Activity in CF
There is growing attention to the role exercise might
play in attenuating the progression of pulmonary disease
[5]. Higher physical activity levels and peak VO2 are
positively related to survival in CF [6,7]. This associa-
tion between aerobic fitness and survival is perhaps the
most compelling rationale for the incorporation of an
active lifestyle into the care of CF patients. There may
be a positive effect from exercise on pulmonary function
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
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by increasing aerobic and anaerobic capacity [8] and
strengthening ventilatory muscles, with chronic exercise
programs being associated with a slower rate of pulmo-
nary function decline [9]. Furthermore, exercise stimu-
lates mucus clearance [10]; by blocking the sodium
channels of the respiratory epithelium, exercise also con-
tributes to lower mucus viscosity and the easing of mu-
cus clearance [11,12].
Conversely, inactivity in patients with CF may worsen
lung disease and compromise participation in activities
of daily living [13]. Chronically ill children, including
those with CF, may suffer from exercise intolerance-
these children have poor fitness, spend less time exer-
cising, and are often deconditioned [14,15]. Many chro-
nic illnesses place a greater energy demand on children–
walking and other tasks may require more energy ex-
penditure [15-17]—which leads to fatigue, lower physi-
cal function, and ultimately lower social participation
and reduced quality of life. Accordingly, most youth
with CF are less active than healthy age-matched peers
and activity levels diminish further during adolescence
[18]. However, there are four randomized control trials
examining the physical and functional benefits associ-
ated with exercise training for CF children and these
intervention studies demonstrate that aerobic and st reng th
training can significantly improve pulmonary function,
aerobic fitness, and strength [19-22].
From an intervention perspective, there are two cen-
tral limitations in this research field. First, existing re-
search adopts a conventional exercise training approach.
Although hospital-based programs facilitate a high de-
gree of patient supervision and monitoring [23], such
programs may lack sensitivity to children’s local envi-
ronments, interests, and contexts and may not be inher-
ently enjoyable and appealing for children. In addition,
they are cost and resource intensive, and, upon termina-
tion of the program, they invariably encounter difficul-
ties with sustainability [22,23]. The issue of sustainabil-
ity deserves considerable attention, given that a fre-
quently encountered problem for chronically ill patients
is the deconditioning that occurs after the cessation of
the structured exercise training program [24,25]. A com-
plementary yet arguably more realistic approach is to
encourage increases in physical activity by integrating
opportunities for physical activity into daily routines.
There is some evidence that habitual physical activity is
positively associated with lung function (FEV1) at least in
girls with CF and that FEV1 is associated with long-term
survival in CF [26]. Interventions aimed at increasing ha-
bitual physical activity may be more successful with re-
spect to long term compliance compared to conventional
exercise training interventions [27]. However, we are not
aware of any interventions that hav e atte mp ted to increa se
habitual physical activity among children with CF and
examined whether increased physical activity is associ-
ated with improved quality of life.
Second, in reviewing the existing research, it is clear
that there is no explicit theoretical approach informing
the development and delivery of the described exercise
intervention. That is, it is not clear how investigators
intend to change th e behaviour of their p articipants either
in terms of short term adherence to a program or longer
term maintenance of exercise behaviour. Theory-based
physical activity interventions in the general adult popu-
lation have been shown to be more effective at increasing
activity than atheoretical interventions [28]. Theory also
provides a roadmap to help clinicians promote behaviour
change more efficiently. At the least, teaching the behav-
ioural self regulation skills necessary for families to in-
dependently regulate physical activity behaviours and to
adhere to physical activity over time is necessary [29]. To
our knowledge, existing research has not explicitly en-
gaged in this process. The development and application
of a theoretical framework grounded in the realities of
living with a chronic disease, such as CF, is necessary.
Before developing large scale interventions, the
Medical Research Council [30] framework encourages
researchers to engage in preliminary, developmental
work with potential users, to ensure that interventions
address areas of concern that are relevant to users.
Methodological research suggests that this vital pre-
paratory work is often overlooked [30]. Thus, this paper
has three objectives. First, given the atheoretical nature
of the literature, we describe the development of a
grounded theory of physical activity for CF youth. Sec-
ond, w her e grou nded th eor ies are rarely applied, we then
describe the application of this theory in informing the
development of a behavioural counselling program for
CF youth known as “CF Chatters”. Finally, d rawing on a
case study approach, we describe and reflect on a pilot
evaluation of the pr o gram.
We have conducted qualitative research with CF chil-
dren and their parents to identify disease specific barriers
and facilitators to physical activity participation [31,32].
This developmental work has allowed us to identify key
barriers and facilitators of physical activity in this pop u-
lation, and develop a grounded theory of physical activ-
ity participation in CF you th. Using a case-study design,
we then piloted an intervention based on a self-regula-
tory approach to behaviour change that engaged both
youth and their primary caregivers. These steps are now
2.1. Developing a Grounded Theory
We conducted two qualitative studies that sought to
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
Copyright © 2011 SciRes. Openly accessible at http://www.scirp.org/journal/OJPM/
examine how CF youth and their parents perceive and
experience physical activity [31,32]. Informed by the
grounded theory qualitative research tradition, we then
conducted an in-depth qualitative analysis—or crystalli-
zation—of the findings from these two studies to create
a theory of physical activity in CF. Grounded th eory is a
total qualitative research design that encompasses both
methodology–or how knowledge about the social world
should be produced, as well as methods or tools for the
collection of data in the social world. Although grounded
theory is a hotly debated and contentious research design,
and reflects great evolution over time, it is a theory driven
qualitative tradition that facilitates greater comprehen-
sion of a particular groups’ social experience in natural-
istic settings. As in the case of physical activity for youth
with CF, grounded theory is particularly useful for the
investigation of unknown or poorly understood social
experiences as they unfold in the social world [33-35].
While a detailed discu ssion about th e grounded theory
research tradition is beyond the scope of the present
study, a few points related to this research tradition are
important to discuss. Sp ecifically, ground ed theory relies
on a process of abduction for the production of know-
ledge. Researchers may be theoretically sensitized to a
particular area; having read literature on physical activ-
ity and CF, they do not arrive to the research field as a
tabula rasa. However, despite being theoretically sensi-
tized by the literature, the process is data driven. Thus,
the analytic process remains grounded and embedded
within the data itself. In this regard, novel information
arises in and through the data and all interpretations are
data driven and empirically supported [35].
Additionally, it is also critical to discuss the episte-
mological assumptions that lie at the heart of grounded
theory. Although grounded theory has changed from a
largely post positivist articulation, in this study, we em-
ploy Charmaz’s social constructivist version of grounded
theory. We acknowledge that the data analysis process is
always an interpretive act, and, rather than discovering
or “excavating” true facts, the findings are co-created
interpretations that arise at the interface between the
researchers and the participants. Thus, we concur with
Charmaz’s reflection on the data collection process when
she states that “data do not provide a window on reality.
Rather, the discovered reality arises from the interactive
process and its temporal, cultural, and structural con-
texts” [34,35].
In developing our grounded theory of physical activity
in CF, we were guided by Weed’s eight principles for
“full fat” grounded theory. Seeking to avoid methodo-
logical policing and fundamentalism, these criterion are
not hard and fast rules. Rather, Weed’s grounded theory
criterion ensure that researchers employ all aspects of
the GT tradition, rather than selectively “handpick.”
Adhering to these criteria enhances the internal micro
level consistency of the study itself, as well as macro
level consistency to larger bodies of knowledge [35].
Following Weed [35], first, we adopted an iterative
stance toward the data collection and analysis process.
Thus, data collection and analysis were not divorced
from one another, and, rather, the emerging data analysis
guided the data collection process. Furthermore, we em-
ployed theoretical sampling. Thus, the findings that
emerged during the data analysis process were further
“fleshed out,” expanded, and explored during data col-
lection. Thirdly, we strov e to attain theoretical sensitivity.
As such, while the researchers’ bias invariably influ-
ences the analysis process, we strove to be cognizant of
the assumptions that drive the investigation and re-
mained open to new and emergent lines of inquiry.
Fourth, the constant comparative method guided the data
analysis process. While we did not adopt open, axial,
and selective coding, a) the 30 transcribed interviews
were thoroughly read multiple times both individually
and across the data corpus, b) coded for relevant units of
meaning that relate to physical activity in CF youth, c)
sorted and collated into named conceptual themes, d)
collapsed and refined into higher order concepts, and e)
searched for the inter-relationship between themes. To
aid the analytic process, we used memos–or notes-to
assist with the coding of the data. Sixth, by being aware
of how our personal biographies influence the research
process itself, we adopted a self reflexive stance. Sev-
enth, in both the ch ildren’s and p arents study, the collec-
tion of fresh data failed to render new theoretical in-
sights or to expand our concepts. In this regard, the data
was theo retically saturated . Eighth, while d ifferent crite-
rion are used to ensure the micro-level internal consis-
tency and quality of a qualitative analysis, the princip les
of fit, work, relevance, and modifiability guided our
judgments about research quality. In this regard, the
resulting theory accurately fits and describes the data.
Furthermore, the theory offers explanations to problems
that are observed within the research context, such as
parental stress, and reflects the concerns that are relevant
to the participants. Finally, the theory is modifiable and
open to further extensions and insights that may be of-
fered in the future about the data. Finally, we “thought
theoretically” from the beginning of the investigation and
strove to develop a parsimonious substantive grounded
theory of this particular social experience [35]. In sum-
mary, we employed the grounded theory qualitative re-
search tradition to conduct an in-depth analysis of the
transcribed interview data from our children’s and par-
ents’ study [31,32], and, in doin g so, developed an in itial
conceptual framework that describes and explains how
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
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CF youth and their parents experience physical activity.
Our theory is described and illustrated within th e context
of the literature (see Figure 1).
For CF youth and parents, the burden of disease was
described as the most noxious barrier toward physical
activity. By making participants feel unwell, symptoms
such as breathlessness, fatigue, and dizziness led youth
to avoid physical activity. The detrimental impact of
disease symptoms on the ability to be active has been
reported by other CF youth [31,36], as well as youth
with chronic diseases more broadly. Interventions must
remain sensitive to youths’ real and perceived symptoms
and work toward the minimization of disease related
burden. Furthermore, CF youth and parents reported low
value toward physical activity. Within the context of
feeling unwell–and lacking mastery experiences that
confirmed feelings of success–youth gradually reparti-
tioned their energy away from physical activity and did
not define it as an important or valuable pursuit. Physical
activity value shifts have been reported in youth with
other chronic diseases [37,38], suggesting that such
value changes may serve a self protective function that
prevents further damage to self esteem losses. As such,
physical activity interventions should work toward en-
hancing the value that youth ascribe toward physical
activity itself. Parents stated that low self-efficacy for
physical activity-or lacking experiences of success–was
a detrimental barrier that led their children to avoid
physical activity. Th e social environments in which chil-
dren undertook physical activity, such as physical educa-
tion settings or community physical activity groups,
were often not self-efficacy supportive and were charac-
terized by experiences of exclusion and hostility from
healthy, able body peers. Youth often encountered bul-
lying and discrimination on account of their non-norma-
tive embodiments. Low self-efficacy for physical activ-
ity is well documented [37,39], and appears to be a ge-
neric experience that characterizes youth with chronic
diseases more broadly. Interventions for this population
should work toward self efficacy enhancement for
physical activity.
CF youth underscored the importance of parental
support for physical activity. Youth that lacked parental
physical activity support lamented the absence of this
important instrumental and emotional function, and
wished that th eir par ents would eng age in physical activ-
ity with them. Regardless of whether they were positive
or negative role models, parents also discussed the im-
portance of parental role modeling of physical activity
behaviours. While previous interventions have not en-
gaged parents as important sources of social and emo-
tional support for physical activity– and critical role
models–literature from the field of pediatric obesity un-
derscores parents’ important role modeling function. In
particular, due to the facts that a) parents are “gatekeep-
ers” to health behaviour change who either facilitate or
hinder physical activity, b) individual behaviours are
strongly influenced by contextual, familial, and envi-
ronmental factors, c) social modeling and observation is
critical to the development of healthy behaviours in
children, and d) members of the same family tend to be
genetically and behaviourally similar, there are compel-
ling rationales for the inclusion of parents in physical
activity interventions [40-42]. Additionally, youth ado-
pted different illness narratives to articulate their ex-
perience of living with CF. While some youth reported a
sense of hope and resilience in which physical activity
was employed as “proof” of the ability to conquer CF,
others expressed an overwhelming sense of despair and
hopelessness as a result of CF. Interestingly, youths’ ill-
ness perspective influenced physical activity perceptions,
with more hopeful youth ad opting more positive evalua-
tions of physical activity. While the relationship between
illness narratives and physical activity perceptions re-
quires future investigation, sociology of health and ill-
ness scholars have emphasized the importance of narra-
tive and story telling in making meaning out of experi-
ence, and facilitating a sense of coherence [43]. Inter-
ventions should consider the relationship between
youths’ illness ou tlook and attitud e, and work toward the
facilitation of more positive ways of storying one’s ill-
ness experi ence.
Finally, the higher order concept of “Living on the
Edge of Health and Illness” within our grounded theory
refers to the precarious and fragile grasp that these chil-
dren and parents have on health, and the tremendous
effort they demonstrate to prevent the encroachment of
illness into their everyday lives. Children and parents
live with a constant sense of stress and impending dan-
ger, and sources of stress include child non-adherence to
treatment and living with a life shortening disease. In
particular, given the life limiting nature of the disease,
and the time consuming nature of treatment, CF patients
and parents negotiate significant temporal losses, mak-
ing them more sensitive to temporal stress and proper
time use. “Living on the Edge of Health and Illness”
comprises the broader context in which these families
negotiate physical activity and influences the perceptions
they adopt toward physical activity. It is critical for in-
terventionists to remain sensitive and empathetic to the
enduring sense of stress that these families negotiate,
and understand that physical activity experiences are
inseparable fr o m health.
Grounded theories are often not applied and this is a
significant limitation associated with the gr ounded theory
approach [44]. In the following section, we describe the
process by which our grounded theory—and each of the
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
Copyright © 2011 SciRes. http://www.scirp.org/journal/OJPM/
Disease Burden
Negative Activity
Positive Activity
Low Self
“Livin g on the Ed g e of Health and Il ln es s: ” Fa mily
Fragility, Uncertainty, and Chao s
Figure 1. Toward a grounded theory of physical activity in CF.
main theoretical constructs from our th eory-were applied
to develop, implement, and evaluate a behavioural coun-
selling program known as CF Chatters.
2.2. CF Chatters–Intervention Development
Based on this preceding work and the broader litera-
ture on the determinants of physical activity in children
and youth [45], we developed a six-week family medi-
ated physical activity counselling program called “CF
Chatters”. The name “CF Chatters” semantically plays
on the informal, discussion based nature of the program.
Since youth express negative views toward treatment,
CF Chatters also demarcated the program as distinct
from treatment. The content of the intervention was
based upon and informed by our grounded theory which
identified the disease-specific barriers and facilitators to
physical activity.
The first author delivered all of the intervention con-
tent to the participants and a counselling based app roach
was utilized to engage the participants in informal dis-
cussions. We define counselling in this context as a per-
son and family centred consultation approach to in-
creasing physical activity [46]. Given the limitations
associated with prescribing exercise training to children
and the importance of autonomy and choice to health
and wellbeing, the program was based on individual ac-
tivity choices. Thus, while increased physical activity
was encouraged for all the participants, the exercise
counsellor supported participants’ autonomous decision
making about enjoyable physical activities, and facili-
tated participant physical activity choice.
The program commenced with an initial assessment
phase in which the program was explained and materials
delivered. The program itself consisted of three, 90 minut e
counselling sessions over the course of six weeks. The
length of the programme was largely driven by pragmatic
concerns. We sought to develop an intervention that was
effective in increasing physical activity but cost-effective
in terms of the time and resources required to deliver it,
and the time burden on patients. Reminder and review
Openly accessible at
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phone calls were interspersed between each session, in
which the researcher phoned the participants to discuss
their progress and review barriers (see Figure 2).
The session content was developed to address the cen-
tral content areas from our grounded theory. For instance,
workbook activities such as “My Wheel of Life” or
“Where am I Going?” sought to identify and shift par-
ticipants’ physical activity values from our theoretical
model. Session one sought to educate participants about
physical activity in CF and enhance value for physical
activity (Time Two). Session two sought to facilitate bet-
ter temporal management of physical activity (Time
Three), and session three sought to reduce barriers to
physical activity participation (Time Four). In this regard,
the intervention content—which was incorporated into a
working manual for the participants—or homework-was
embedded within our grounded theory and served as a
prompt for di scussi on (see Table 1).
To assist in implementing the grounded theory, we
were guided by Bandura’s Social Cognitive Theory [47]
with specific intervention components drawn from an
existing taxonomy of behaviour change strategies de-
signed to target common, hypothesized mediators of
physical activity behaviour change (48,49]. These can be
best characterized as facilitating behavioural self-
regulation. Reviews of the literature on mediators of be-
havior change position self-regulatory constructs (e.g.,
planning, contingency strategies, self-monitoring) as the
most consistent agents of change [50,51]. In general,
health behaviour change programmes that teach behav-
ioural skills for self-management have been recom-
mended because of their effectiveness in promoting
physical activity (Kahn et al., 2002). As described by
Rhodes and colleagues [52], the basis of these ap-
proaches is that regulatory skills are required to link po-
sitive intentions to subseq uent behaviour. These include,
for example, the specifics of a behavioural plan
(e.g., wh at, when, where, with who) and the problem so-
lving and monitoring of action. Educational approaches
on the benefits of physical activity for CF, and how to
incorporate habitual physical activity into the day may
help create positive attitudes and enhance self-efficacy.
However, these approaches may not necessarily ensure
positive intentions are translated into behaviour. There-
fore, the intervention incorporated techniques such as
goal setting, monitoring, recording, planning, and con-
tingency planning. The goal of the intervention was to
teach participants the behavioural skills required to in-
dependently manage their own physical activity, and to
promote enjoyable physical activity in youths’ local en-
2.3. CF ChattersA Case Study Evaluation
As “embedded case studies”, [53] the CF Chatters
program was pilot tested with six CF patients and their
caregivers to assess the effectiveness, feasibility, and
acceptability of the program. Case study research, which
employs multiple methods, can be described as the in-
depth study and investigation of a few lives in context.
The case study approach is particularly useful for preli-
minary intervention research in that it illuminates par-
ticipants’ individual uptake and appraisal of a program
2.4. Participants
After approval from the Research Ethics Board at the
Hospital for Sick Children, the CF Chatters intervention
was delivered between September and December, 2010.
With the assistance of a clinical nurse facilitator and
exercise physiologist, eligible case study participants for
the CF Chatters pilot intervention were identified and
contacted using the clinic data base. After the study was
explained and informed and written consent obtained,
Time 1
Session One:
Time 2
Session Two:
Planning an d
Time 3
Session Three:
Time 4
Week One ____________________________________ __________________________________ _________________________ Week Six
Figure 2. CF chatters program .
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
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Table 1. CF chatters workbook activities, theoretical constructs, and behaviour change strategy.
CF Chatters
Session Work Book Activities Theoretical Construct Behaviour Change Strat-
egy or Process
One -What does PA mean to me?
-How does PA make me feel?
-What are some examples of PA’s that I could engage in?
-What are some examples of PA’s that I would really
enjoy engaging in?
-PA and the lungs
-What is CF?
-How does PA affect CF?
-The benefits of PA for CF
-The benefits of PA for overall health
-Other physical benefits of PA
-Psycho-social benefits of PA
-PA is safe
Physical Activity Knowl-
edge -Psycho-Education
-Cognitive behavioural
training (CBT)
-Goal setting
One -What do I value in life?
-Where did I come from an d where am I going?
-What are the advantages and disadvantages of
becoming active?
Value Toward Physical
Activity -Psycho-Education
-Behavioural cost and re-
-Goal setting
Two -What does time mean to me? How do I want
to use my time?
-Is treatment time consuming?
-Do I have enough time for PA?
-Planning PA
-PA Calendar activity
-PA action plan
-PA coping plan
Temporal Loses -Planning and Scheduling
-Goal setting
-Monitoring and recording
Two -My neighbourhood and community
-My PA environments
-How can I better engage in PA in the
-Google earth map activity
Understanding Physical
Activity Environments
-Mapping exercises
Three -How do you feel when you are ill?
-What happens to your PA when you are ill?
-What happens to your PA when you are ill?
-Staying active du ri n g il l n e s s
-Falling off the wagon
-What are high risk PA situations?
-PA relapse preventi on plan
-Obtaining social support
-My PA barriers
-Developing strategies to deal with barriers
Disease Burden Goal setting
Behavioural Cost and Re-
Psycho Education
All sessions -The wheel of life
-Caregiver health -Low self efficacy for
physical activity
-Parental support and role
Psycho-Education and CBT
PA = Physical activity.
eight participants enrolled in the CF Chatters program,
including three parent-child dyads (N = 6) and two ado-
lescent participants (N = 2). One parent-child dyad
dropped out over the course of the investigation as a
result of a CF related exacerbation, reflecting a study
retention rate of 80%. The remaining four child partici-
pants consisted of three girls and one boy and the mean
age was 14. Disease severity of the child participants
was measured by forced expiratory volume in one sec-
ond (FEV1) and ranged from 70% to 85%, reflecting
mild to moderate lung disease. Three of the four child
participants had been hospitalized on numerous occa-
sions. Additionally, one male and one female parent par-
ticipated; their mean age was 44 years. Participants were
from the Greater Toronto Area and surrounding region
and reflected a range of ethnicities and socio-economic
2.5. Data Collection Methods
Case study research is composed of multiple methods
and these are briefly described. Semi structured inter-
views were employed in order to explore participants’
experiences of the program. Although a semi-structured
interview guide was developed by the researcher to un-
derstand their experience of the intervention, the par-
ticipants’ responses dr ove fur ther lines of inqu iry and the
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
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interview proceeded in terms of a recursive conversation.
Thus, the semi-structured interview provided a useful
lens to understand participants’ experiences of CF and
physical activity and their perceptions of the program.
These interviews were digitally taped and transcribed
verbatim [56,57].
A detailed field note journal was used throughout the
study to record, describe, and characterize participants’
responses to the CF Chatter’s program, institutional ob-
servations, personal reflections, and novel insigh ts about
the program. Over 150 pages of field work data was col-
lected over the course of the CF Chatters program and
observations were recorded before, during, and after
each session. The field work data further corroborated
the interviews and provided an excellent forum to un-
derstand the unique facets of participants’ lives as well
as their response to the program [58].
The Habitual Activity Estimation Scale (HAES) was
employed as a self report measure of physical activity to
track changes in physical activity as a result of the
Chatters program [59] Th e HAES is a reliable an d valid
tool that was developed by pediatric researchers to as-
sess level of habitual physical activity in children with
chronic diseases.
2.6. Data Analysis
In order to analyze the case studies, first, a thematic
analysis of the transcribed interview data and field diary
data was generated [60]. Interview question responses,
such as the program impact on physical activity and
quality of life, were coded, named, and grouped into
broader themes. Novel responses that were not a com-
ponent of the interview guide, such as how the program
facilitated “tough talks” or the psychological benefits of
the program, were also named, coded, and grouped into
themes. This thematic analysis of the transcribed data
allowed us to understand participants overall perception s
toward the CF Chatters intervention. The HAES esti-
mates the percentage of time that children and parents in
this case, spend being a) inactive b) somewhat inactive c)
somewhat active or d) active. Data was collected based
on one typical weekday or weekend day and entered into
a spreadsheet to calculate the percen tage of th e day sp ent
in each of the four categories of activity. These values
were compared from baseline to week six.
Eight participants enrolled in the CF Chatters program.
However, after the first session, one parent-child dyad
(two participants) dropped out due to a CF related exac-
erbation. The remaining six participants (two parent-
child dyads and two adolescent participants) attended all
sessions, reflecting 100% attendance. The participants
also completed all of the workbook or homework activi-
ties prior to each session as instructed, and actively par-
ticipated in weekly phone call sessions, reflecting good
intervention compliance. The participants described the
program as easy, convenient, relevant to their physical
activity concerns and enjoyable, suggesting that the in-
tervention was feasible and acceptable.
Physical Activity
Self reported physical activity levels measured by the
HAES and as described in qualitative interviews in-
creased among the majority of the participants over the
course of the investigation (see Table 2).
In particular, percentage daily physical activity in-
creased from pre to post test, as well as hours of active
category physical activity. For instance, during her
qualitative interview, 16 year old Layla explained that
over the course of the program, she changed from a state
of inactivity to engaging in three, 20 minute sessions of
basketball/week as well as walking to school on most
days of the week:
My activity did change. Now, whenever I am sitting
around and doing nothing, I am starting to think that
“maybe I could go aside and run around or play basketball
or soccer.” It gets you active and it also helps your body.
In addition to self-reported increases in physical activ-
ity, there were seven themes that captured the benefits of
the program for the participants.
Increases in Physical-Related Quality of Life: The
participants consistently stated that the CF Chatters pro-
gram facilitated enhanced quality of life in the physical-
domain; engaging in more physical activity led to con-
Table 2. Changes in physical activity as a result of the chatters intervention.
Name Age Pre to Post Test Change, % Total
Daily Activity Pre to Post Test Change in
Hours of Daily PA Pre to Post Test Change, Active
Category Outcome
Layla 16 7.9% 1.89 hours 3.3%
0.8 hours Increase
daily PA
Chase 17 6.6% 1.58 hours 1.9%
0.46 hours Increase
daily PA
Emily 11 18.5% 4.44 hours 24.7%
5.93 hours Increase
daily PA
Zoe 12 –7.6% –1.83 hours 1.1%
0.25hours Decrease
daily PA
A = physical activity.
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
Copyright © 2011 SciRes. Openly accessible at http://www.scirp.org/journal/OJPM/
sequent improvements in how they felt about their phy-
sical health and functioning. Since the program bettered
youths’ self reported endurance and ability to partake in
activities of daily living and peer group activity, it im-
proved their physical well-being and reduced exclusion
from physical tasks that contribute toward poor percep-
tions of physical health. For instance, one 17 years old
participant, Chase, explained that the program enhanced
his running ability. Since he is less likely to be excluded
from physical activities with his friends and feel “down”
about himself, his physical quality of life greatly im-
proved. Reflecting on the meaning of quality of life,
Chase stated that:
My quality of life altered a little. With the running-
wanting to run more and then actually changing to run
more-that is only going to help. So, my quality of life
did raise a little. It helped the physical part of quality of
life, with endurance and being able to run more. Endur-
ance comes up all of the time with CF. It does not have
to be running. It could be who knows- whatever kind of
activity. Endurance and stamina are important. I can
avoid situations that bring me down, because I am not
able to do someth ing. I will be able to avo id those things
with better endurance and have a better quality of life.
Enhanced Physical Activity Knowledge: The program
also enhanced education and awareness about the bene-
fits of physical activity for CF. Although participants had
good knowledge about cystic fibrosis, the program fa-
cilitated specific increases in knowledge about the rela-
tionship between physical activity participation and re-
duced disease symptoms. Additionally, participants also
learned about the psychological benefits of physical ac-
But I learned that physical activity help s your psycho-
logical-and your think ing and stuff and your lungs. And,
I learned that I never knew that it could help that much,
but it can (Emily, age 11).
For participants with lower levels of baseline physical
activity–that is, Layla, Zoe, and Gretchen-psycho-edu-
cation, or educating participants about the benefits of
physical activity for CF and identifying, modifying, and
challenging thought misconceptions, was the most effec-
tive technique. For instance, Layla was misinformed
about physical activity and falsely believed that it was
injurious to health. Indeed, while increased sputum clea-
rance and coughing during activity is beneficial for CF
patients, this may frighten or confuse misinformed youth,
leading them to consider physical activity as injurious.
Similarly, Zoe and Gretchen were not aware of just how
important physical activity is for lung health in CF, and
such psycho-educational discussions facilitated better
Enhanced Self Knowledge: Additionally, the program
enhanced knowledge “about the self,” equipping par-
ticipants with a greater understanding of who they are as
unique individuals. In this regard, participants suggested
that the program facilitated a greater degree of self re-
flexivity, awareness, and insight into personal barriers to
physical activity and individual coping and resiliency:
Yes, like the questions in the book make you think
about things and the kind of person that you are. Well,
the program has made me think more about myself, and
to think about what I need to do to stay healthy and to
have a good life (Layla, age 16)
Value Shifts: The program also appeared to facilitate
important value shifts in which participants came to as-
cribe greater value to the importance of physical activity
within the context of their daily lives. Participants dis-
cussed how the program facilitated an understanding of
why physical activity should be a priority and contrib-
uted toward a different perspective on the importance of
physical activity:
The program gave me a different perspective. To say,
“What can we do to change things and to make things a
priority in all of our lives and not just their lives?” That
dynamic in the family does need to shift to be more ac-
tive. To becoming more of a social aspect, rather than a
“oh, we have to do this, aspect …What I got more out of
it, was the change in attitude and the knowledge that
there was-that we needed to have a different perspective
to get active-that is what I will come away with (Gret-
chen, parent).
Reduced Disease Barriers: The program assisted
youth in identifying and dealing with disease related
barriers to physical activity. Participants devised novel
coping strategies to deal with the negative impact of di-
sease symptoms on physical activity–such as creating a
relapse prevention plan–thereby arguably attenuating
perceived helplessness related to inactivity. For instance,
rather than remaining completely inactive when hospi-
talized, Emily and her parent, Erik, suggested that they
could reduce the negative impact of the disease on
physical activity by taking brief walks in the hospital u-
nit or on the hosp ital grounds outdoor s. They also appre-
ciated a proactive approach to thinking about physical
activity barrier reduction:
And even what we talked about today with the barri-
ers ... lik e “here a re the barr iers and how c an you plan to
overcome the barriers?” You start to think about it before
it happens. And I think that is a very good thing because
then you are not caught off guard, when it does happen. I
think that it was important to talk about, so, again, you
can plan it out ahead of time. Get used to think ing about
it, ahead of time. “Like, Emily is going into the hospital.
What can I do? We can walk up the stairs, right. We can
walk around” (Erik, father).
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Accordingly, contingency planning–or planning what
one will do if original efforts and intentions to be active
are not successful–was the most effective strategy for
those participants that were experiencing greater disease
symptoms and burden, such as Layla, Emily, and Erik.
For instance, Emily and Erik proposed a contingency
plan that consisted of attending at least one dance class a
week during times of illness, rather than skipping class
altogether, or assisting with household chores at home
rather than remaining sedentary on the basement couch.
Tough Talks
The participants suggested that the program offered
important psychological benefits by facilitating “tough
talks” that would have been difficult to have in the ab-
sence of a counsellor. For instance, participants valued
the opportunity to discuss the social and psychological
impact of living with CF with a counsellor in a safe and
supportive setting. One mother in particular commented
on the absence of psychology in the care of patients with
CF as a limitation of clinical practice, and the impor-
tance of adopting psychological approaches to manage
the psycho-social impact of caring for a CF child:
I mean, we get familiar with the medical staff. We
know the respiratory therapist, we know the nutritionist,
we know the nurses, and we know the doctors. But, we
do not know the psychological side of things. That is
because we only see psychology unless we ask for that.
If you do not have a significant issue, then, you will just
coast along, as though it is just a part of your lif e. This is
a significant issue within our lives. Not just from the
kids perspective, but from our perspective as well. So,
having the opportunity to talk through some of those
issues-even if you say “everything is fine” or, rather
“maybe we do need to talk about that, a little more” …
As a parent, we tend not to have the time to have these
conversations with our children. We tend to be focused
on our day to day existence. We do not have the time to
have an in-depth conversation and we do not have the
time to spend time together, with somebody leading the
discussion. It has been excellent, from that perspective
Distinctly Different”. The participants described the pro-
gram as distinctly different from routine clinical appo int-
ments in that the sessions were non medical and discus-
sion focused. They appreciated that the program did not
include measures of respiratory function and other
medical tests and that they were given the opportunity to
engage in free and open discussions about their health,
values, past, and personal beliefs. The participants ex-
pressed favourable and positive perceptions toward the
distinctly different nature of the CF Chatters program:
I have never had to do this before. The program felt
new. Interviewer: Did new feel good or bad? It felt good
because I did not have to get any shots, and I did not
have to do the breathing thing. So it was actually cool
(Zoe, age 12).
They are completely different appointments. When I
come here, it is very structured and pretty much the
same every time. I come here, do PFT’s, other tests, talk
to doctors, give blood work, and then I am out. This
feels different. It is like I am coming here for a meeting
and it does not feel like I am here for a clinic visit. I like
it. Generally, people like talking about themselves. I
enjoy it. Same area of the hospital, but it feels different
(Chase, age 17).
The program appeared to enhance temporal reparti-
tioning for physical activity in which participants dis-
cussed the benefits of devoting more time toward physi-
cal activity and increased their ability to plan for physi-
cal activity in their daily lives. The program also en-
hanced youths’ ecological acuity, or awareness of the
places in their local environments that were physical ac-
tivity supportive. For instance, using Google Earth maps
and cognitive maps, participants identified places in the
familial, school, community, and neighbourhood environ-
ment that were health and physical activity supportive.
In summary, the CF Chatters program was well at-
tended and described as easy, convenient, relevant, and
acceptable for the participants. The participants de-
scribed the program as distinctly different from clinical
care, and expressed favourable opinions toward the non
medical, child centred, discussion oriented nature of the
program. Although objective measures of physical activ-
ity were not employed, the pr ogram was associated with
increases in self-reported physical activity levels and
quality of life in the physical domain. In addition to in-
creased physical activity k nowledge, p lanning skills, and
reduced physical activity barriers, the program appeared
to afford therapeutic benefits to participants, reduce
caregiver stress, and increase knowledge about the self
and the environment.
The findings from the CF Chatters pilot case study in-
tervention can be interpreted within the context of our
grounded theory of physical activity in CF and other
relevant health behavior change theories. Specifically,
the intervention assisted patients and parents in dimin-
ishing barriers toward physical activity, most especially,
disease related burdens. Described as the most noxious
and unpleasant physical activity barrier, symptoms such
as fatigue and breathlessness led youth to feel bad about
themselves in physical activity, contributing toward ac-
tivity avoidance. The negative impact of disease symp-
toms on the ability to be physically active is well docu-
mented in the literature-and the vicious, “chicken or
egg” cycle of inactivity and escalating disease symptoms
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
Copyright © 2011 SciRes. Openly accessible at http://www.scirp.org/journal/OJPM/
that this may contribute toward [2]. By enhancing par-
ticipants’ capacity to manage disease related barriers and
identify and strategize ways of coping, the program di-
minished disease burden and perceptions of disease re-
lated helplessness. It is important to note that partici-
pants found discussions about the burden of disease to
be “extremely important” and “something that you have
to talk about and should no t avoid”—wh ile also “sligh tly
upsetting”. Thus, while participants suggested that dis-
cussions about the burden of disease and its impact on
physical activity were very important, such discussions
must occur with the utmost sensitivity. Interventionists
should follow youths’ lead with respect to how much
and what aspects of their disease and its impact they
want to discuss.
Youth with CF and other chronically ill children are at
risk of physical activity “value shifts [37,38]”. Within
the context of feeling unwell and lacking self efficacy
enhancing mastery experiences, they shift attention away
from physical activity to protect self esteem, and de-
scribe it as “not important”. As described by one parent
[32], such progressive repartitioning of attention away
from physical activity, can, over time, lead the child to
develop a set of non-active interests and pursuits. The
CF Chatters program appeared to facilitate slight value
shifts for the participants over the course of the program.
For previously active participants, the program served to
reinforce the importance of activity to their broader
value system. For less active participants, such as Layla,
the program fostered broader discussions about what
would need to change in her life for physical activity to
become more valuable. In this regard, it appears that th e
CF Chatters program may assist youth in better identi-
fying and discussing the importance of physical activity
to their broader value system. Future interventionists
should work with youth to enha nce the value and impor-
tance ascribed to this construct.
Low self efficacy for physical activity among children
with chronic diseases is perhaps one of the most well
documented barriers toward physical activity. Often ex-
cluded from same age peer group activity, these children
lack mastery experiences in physical activity and often
report negative experiences that compound self efficacy
losses, such as bullying and demoralization on account
of their non-normative embodiments [37]. Where good
physical health, verbal persuasion and encouragement,
mastery experiences, and vicarious learning are critical
to the development of self efficacy [61], these youth are
often deprived of the critical antecedents to healthy self
efficacy formation. Although self efficacy was not a
central chapter in our manual or a component of our in-
terview guide, the CF Chatters program was broadly self
efficacy supportive. By providing constant praise, en-
couragement, and positive reinforcement for goal at-
tainment, we sought to enhance children’s physical ac-
tivity self efficacy throughout the program. Participants
either displayed enhanced physical activity self efficacy,
or, rather, the ability to identify situations and contexts
that were self efficacy enhancing. For instance, through
discussions and counselling, Chase recognized that he
does not “suck at all sports”. In contrast, he recognized
that while swimming and sprinting exasperate disease
symptoms and make him feel badly about himself, ac-
tivities such as cycling are self efficacy enhancing. In
this regard, the program facilitated a more contextual
conceptualization of self efficacy, rather than a static
view of this construct. It appears that CF Chatters is self
efficacy enhancing and future interventionists should
continue to work toward buffering youths’ fragile physi-
cal activity self efficacy.
While it is beyond the scope of the current paper, the
attitudes that youth adopted toward their illness–and
illness narratives—was a very important theoretical con-
struct that served to demarcate and differentiate the case
study participants in this pilot study. The participants
who displayed narratives of hope, optimism, and resil-
ience–or what Arthur Frank [62] terms the “overcoming,
restitution narrative”—reported fewer barriers toward
physical activity and greater interest in adopting a
physically active lifestyle. For instance, despite the fatal
nature of CF, Emily, Chase, and Zoe discussed the im-
portance of undertaking health behaviours that would
slow the progression of the disease over time, such as
engaging in physiotherapy, staying active, and eating
well. Evidence on the benefits only confirmed their de-
sire to be active, and they were eager to reap the health
related benefits. In stark contrast, case patient Layla de-
scribed a “chaotic” illness narrative [62], emphasizing
her sense of futility, hopelessness, and depression. Layla
often engaged in self sabotaging behaviours; since CF is
ultimately fatal, she often did not see the point in treat-
ing her illness and engaged in treatment non-adherence.
It is important to note that despite her negative disease
outlook, Layla did display increases in physical activity
behaviour and physical quality of life that exceeded
those of other participants in the program. However, it
was more challenging to engage Layla in the program
and encourage her to be active, and her all encompassing
negative world view was a difficult mindset to engage
with. While all other participants maintained physical
activity after the termination of the program, Layla
quickly resumed her previously inactive state and “silent
treatment” mode of communicating with adults. It is
important for future interventions to take stock of the
ways in which the illness narratives that patients con-
struct influence not only their understanding and coping
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
Copyright © 2011 SciRes. Openly accessible at http://www.scirp.org/journal/OJPM/
with illness [63], but also, their affinity and interest in
physical activity. Interventionists should listen and hear
[63] youths’ illness narratives, and work toward devel-
oping more positive ways of storying their health and
illness experiences.
Finally, the findings from this study further extend
and complicate our original theoretical construct of re-
duced time for physical activity, suggesting that greater
theoretical and methodological attention is required. Gi-
ven the life shorten ing nature of the disease and the time
consuming nature of treatment, participants in previous
studies stated that they have “no time to play” [31]. Sur-
prisingly, in the current intervention, all participants de-
scribed the program as a worthwhile time investment
that should be longer in duration. It is not clear if, with
counselling, the program facilitated temporal repartion-
ing for the participants in which they came to desire
spending more time engaged in activities that were per-
ceived to be valuable. Alternatively, CF patients may be
“masters of their time” who do not waste time and more
carefully negotiate their temporal outputs. In any case,
the CF Chatters program was not regarded as wasteful of
time and was a worthwhile temporal investment. This
also suggests that the intervention could be developed,
perhaps with top-up sessions to reinforce behavioral
skills training without overburdening participants. Al-
though the literature has repeatedly underscored the
ways in which the body, self, and relationships are pro-
foundly changed through CF and the illness experience
[64], it is critical that more research on CF youths’ tem-
poral negotiations-an d the impact on physical activ ity-be
conducted. In this regard, our theory of physical activity
in CF served as a useful template fo r the interpretation of
study findin gs.
Given the multiple component and multiple behaviour
nature of complex interventions, the Medical Research
Council [30] encourages researchers to undertake early
developmental and feasibility work to explore potential
users intervention needs and interests, and relevant con-
textual issues. Furthermore, before larger scale, cost in-
tensive research programs are undertaken [30], exploring
the feasibility and likelihood of intervention work is
strongly advocated. Although RCT’s serve as the “gold
standard” of research based evidence, there are situations
that impair their feasibility and in which common sense
must guide best practice. Early developmental work to
explore issues of feasibility assists researchers in assess-
ing whether an RCT should be undertaken.
Participants suggested that the intervention was easy,
convenient, enjoyable, and relevant to their physical
activity concerns. By completing all the intervention
workbook activities and participating in phone calls and
sessions, they also displayed excellent intervention com-
pliance. In addition to goo d clinical utility and not over-
burdening the clinic, the intervention appears to be ac-
ceptable and feasible for the participants. For the CF po-
pulation in particular who manage an arduous treatment
burden, suffer from poor physical health, and display
poor long term compliance with exercise training re-
gimes, issues of feasibility are arguably of great impor-
tance. For instance, Gruber et al. [45] note that althou gh
their daily, home based cycling program for CF youth
resulted in improved physiological and psycho-social
health, the program was not perceived to be acceptable
or enjoyable for the participants. From our developmen-
tal qualitative pilot work, it can be concluded that our
program is feasible and that an RCT can safely be un-
dertaken. In developing such a larger scale trial, we will
be able to ensure that the intervention is sensitive to the
needs of this fragile population.
There were several conceptual and pragmatic limita-
tions associated with th e CF Chatters program. Based on
our grounded theory of physical activity in CF, and lit-
erature that underscores the importance of engaging
parents in ill youths’ physical activity [40], the program
was designed as a parent mediated intervention and se-
parate child and parent manuals were developed. Upon
starting the program, however, the adolescent case pa-
tients—Chase and Layla—opted to participate without
their parents. Instead, their parents facilitated transport
to the counselling sessions and waited for them in the
hospital cafeteria or clinic. In contrast, the child partici-
pants Emily and Zoe activity engaged in the program
with their parents.
While this limitation required us to slightly modify
our intervention delivery and prevented us from deliver-
ing a uniform parent mediated program to all the par-
ticipants, it is instructive. While there are invariably dif-
ferences between biological and developmental age, the
results from our case studies suggest that younger child
participants desire to engage in the program with their
parents. Indeed, they found the presence of parents to be
satisfying and comforting and parents are valuable
sources of knowledge for information that the child may
forget. In contrast, the older adolescent participants de-
sire to participate without their parents, or rather, with
the informal facilitative support of their parent. It has
been suggested that the central task for adolescents is
individuation from the parent and the development of an
autonomous self and distinct identity [65]. Concerns
related to autonomy may be particularly heightened dur-
ing this fragile developmental period. As such, it is
likely that future CF Chatters child participants will en-
gage in the program with parents. In contrast, adoles-
F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124
Copyright © 2011 SciRes. Openly accessible at http://www.scirp.org/journal/OJPM/
cents may wish to engage in the program alone and their
desire for autonomy should be supported and encour-
aged. Interventionists may wish to provide patients with
a choice of parental involvement.
Three sessions was adequate time to deliver the con-
tent and to counsel the particip ants to enhance their phy-
sical activity. The program is feasible, suggesting that it
can easily be incorporated into clinical practice. With
respect to the limitations of the intervention itself, the
reminder and review phone calls home—which were
interspersed between sessions–were often difficult for
the researcher to conduct. Patients and parents were of-
ten not at home at the time of the phone call, and were
attending other scheduled activities. This was time con-
suming for the researcher and required multiple phone
calls home. Future interventionists should schedule a
weekly reminder and review phone call to avoid this
time expense. Additionally, given that the CF clinic is
very busy during day time hours, sessions were sched-
uled in the late afternoons and evenings. Given that
children did not have to miss school, parents were plea-
sed with the time of the appoint ments. As well, since the
program did not interfere with the clinical day time pro-
gram, clinical staff was appreciative of the program time.
It was also pleasant to work with the participants in a
quiet setting, free of day time interruptions. Thus, future
interventionists should consider CF Chatters as an after-
school or evening hospital program.
Finally, there are clear limitations associated with
adopting a qualitative, descriptive approach to investi-
gate participants’ perceptions toward a physical activity
program, and reliance on self report data collection tools.
Such a participant centred evaluative approach is critical
to ascertaining participants’ perceptions toward the pro-
gram and offers valuable descriptive, interpretative, and
exploratory information to ensure th at later interventions
are grounded in the lives and experiences of potential
users. However, in the absence of objective physical
activity measures, and a well powered sample that is
representative of the CF populace at large, the results are
not generalizable beyond the study sample itself in the
“classic” sense of generalizability. However, as sug-
gested by Conrad and others [66], the findings may offer
case generalizability or tran sferability to similar co ntexts,
people, and places, serving as “proof of concept.” In this
regard, the findings from this pilot study may account
for how other CF patients resolve similar physical activ-
ity dilemmas in other contexts. Such transferability as-
sessments should be made by readers of this work who
should judge the relevance of the findings to their clini-
cal context based on a gradient of similarity.
Guided by the MRC framework [30], the development
of a CF Chatters feasibility trial is the next step. Such a
feasibility trial should be characterized by a well pow-
ered sample, objective measures of physical activity, and
the inclusion of a usual care condition that does not re-
ceive the CF Chatters interven tion. A feasibility trail will
allow researchers to further address theoretical con-
structs within our grounded theory, and tease out media-
tors of physical activity b ehaviour change. We found that
different techniques were effective for different partici-
pants. Further research is required to stipulate the self
regulatory skills that are most appropriate for the CF
Chatters program. Psycho-education and contingency
planning was the most effective approach for our more
inactive patients and parents—Layla, Zoe, and Gretchen,
and those participants that were experiencing greater
disease burden—Layla and Emily. Alternatively, goal
setting, planning, and recording were most effective for
those already active patients and parents who were mo-
tivated to further enhance their physical activity–Chase
and Erik. Future research initiatives should work to-
wards unraveling which behavioural self regulation
skills and strategies are most appropriate for the diverse
participants in the program. Generating such evidence
will allow researchers to assess whether a definitive
RCT should be conducted, examining the effectiveness
of the physical activity behavioural counselling approach
for the CF population.
Despite the many benefits of physical activity for the
CF population, many of these youth are not meeting the
guidelines for physical activity for optimal growth and
development. Existing intervention research is atheo-
retical and tends to prescribe exercise training, rather
than enjoyable physical activities of one’s choice. Fol-
lowing a recent call by Hebestreit [67]—that behavioural
counselling is critical for sustained physical activity in
CF–the intervention described in this paper is timely. In
addition to demonstrating the utility of the qualitative
paradigm in developing conceptual models and theoreti-
cally informed behavioural interventions, the CF Chat-
ters program facilitated increased physical activity and
quality of life. Where measures of psycho-social health
and quality of life have not typically been included in
intervention research, enhanced ph ysical quality of life is
a particularly noteworthy finding. While further research
and development is required to assess the effectiveness
of CF Chatters, this study provides a usefu l template for
the design of programs that are suitable and sensitive to
the complex health and physical activity needs of this
life limited population.
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