doi:10.4236/ojpm.2011.13016

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Vol.1, No.3, 109-124 (2011)

doi:10.4236/ojpm.2011.13016

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.

ABSTRACT

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 youth―“CF 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

youth.

Keywords: Cystic Fibrosis; Physical Activity;

Children and Youth; Behavioural Interve ntion

Development; Qualitative Research; Ca regivers

1. INTRODUCTION

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

110

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.

2. METHODS: OVERVIEW

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

described.

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

111

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

112

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

113

Disease Burden

Negative Activity

Perceptions

Positive Activity

Perceptions

Illness

Narrative:

Despair

Low

Value

Parental

Support:

Lacking

Illness

Narrative:

Hope

Parental

Support

Low Self

Efficacy

“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

F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124

114

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-

vironments.

2.3. CF Chatters―A 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

[53-55].

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,

Assessment:

HAES

Time 1

Session One:

Education/

Values

Time 2

Session Two:

Planning an d

Environments

Time 3

Session Three:

Barriers

HAES/

interview

Time 4

Phone

call

Phone

call

Phone

call

Week One ____________________________________ __________________________________ _________________________ Week Six

Figure 2. CF chatters program .

F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124

115

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

skills

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

-CBT

-Behavioural cost and re-

ward

-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

-Psycho-education

-CBT

Two -My neighbourhood and community

-My PA environments

-How can I better engage in PA in the

environment?

-Google earth map activity

Understanding Physical

Activity Environments

-Psycho-Education

-CBT

-Mapping exercises

Three -How do you feel 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-

ward

Psycho Education

CBT

All sessions -The wheel of life

-Caregiver health -Low self efficacy for

physical activity

-Parental support and role

modelling

-Stress

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

brackets.

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

116

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.

3. RESULTS

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

117

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-

tivity:

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

understanding.

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).

F. J. Moola et al. / Open Journal of Preventive Medicine 1 ( 2011) 109-124

118

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.

4. DISCUSSION

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

119

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

120

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.

Limitations

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

121

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.

5. CONCLUSIONS

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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