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Background: Participation in regular physical activity is routinely recommended for adolescents with cystic fibrosis (CF), however, past research suggests that many patients are not regularly physically active. There may be a variety of reasons for this inconsistent participation. In this study, we used qualitative methods to explore attitudes toward physical activity with a focus on identifying facilitators and barriers in a small group of adolescents with CF.
Methods: Ten participants with CF aged 13-17 volunteered for this study. Two, open-ended semi-structured telephone interviews were conducted. Participants were questioned about their current and past physical activity participation, their feelings about physical activity, and factors that made them want to be physically active or not. Participants were also questioned about their perceptions of physical activity for themselves and other adolescents with CF. Initial interviews were recorded, transcribed, and coded into categories. During a follow-up interview, 3 to 4 weeks later, participants were reminded of their initial responses and allowed to elaborate or clarify their initial responses. All responses were categorized and became major themes describing facilitators and barriers to exercise.
Results: All participants articulated understanding the importance of participating in physical activity for health benefits. Factors that served as facilitators to participation in physical activity included improving general or lung-specific health, as well as mental health. Barriers included general discomfort, increased lung symptoms, and disinterest.
Conclusions: A group of adolescents with CF perceived positive general and lung health effects of physical activity, but also perceived barriers to participating in regular physical activity. Further work is needed to determine ways to accentuate facilitators and decrease barriers to promote regular physical activity in adolescents with CF.
Cystic fibrosis (CF) is an inherited disorder of ion transport in the exocrine glands that affects the hepatic, digestive, reproductive, and respiratory systems.1 It is the most common life threatening genetic disorder in the Caucasian population, and affects approximately 30,000 children and young adults in the United States.2 Regular physical activity and exercise are considered important for the well-being of these patients.2 Specifically, regular aerobic exercise enhances cardiovascular fitness,3,4 enhances airway clearance,2 slows the decline in lung function,5 and improves body mass.6 Patients who have good aerobic capacity not only have an improved overall prognosis,7 but also an enhanced quality of well being.8 Regular self-selected physical activity has been shown to improve lung function in adults with CF.9 Hebestreit et al10 demonstrated that time spent in moderate-to-vigorous physical activity correlated to aerobic capacity, independent of lung disease or leg muscle mass or function in adolescents and adults with CF. Exercise involving strength training can lead to increased body mass in participants with CF,6 which is important because low body mass predicts morbidity and mortality.11 Other benefits of various types of regular exercise training include delayed onset of dyspnea, maintenance of bone density, enhanced cellular immune response, and increased feelings of well-being for people with CF.1
While regular participation in physical activity and exercise has been promoted as part of the management of individuals with CF,2 adherence to exercise in this population can be poor. Children and adolescents with CF are less physically active than their peers.12 There may be a number of potential reasons for this poor rate of participation, including parental and adolescent attitudes, lack of opportunities for participation in sports and exercise, and disease-related physical factors. Boas et al13 found that parents of children with CF perceived greater barriers to their child's ability to exercise and fewer benefits to exercise than did parents of healthy children.
While children's physical activity and exercise participation may be somewhat dictated by their parents, adolescents (typically defined as ages 12-18) often begin to determine their own physical activity patterns.14 These patterns of physical activity often do not correlate well to parental patterns.15 Therefore, the adolescent's own perception of physical activity may play a large role in his/her participation. Population studies of healthy children have shown a decline in physical activity and exercise during adolescence.16 Patterns of physical inactivity set during adolescence may influence adult behaviors and impact risks of developing diseases related to sedentary lifestyle. It is important to explore the perception of adolescents regarding physical activity and exercise in order to determine the optimal means to affect this behavior. Thus, the purpose of this study was to explore perceptions of physical activity participation in adolescents with CF through an intensive study of a small group from one CF care center.
For this descriptive study, qualitative methods were used to identify perceptions of physical activity participation in adolescents with CF. When there is a paucity of research on a particular topic, the qualitative paradigm can offer an appropriate design because issues important to the participants are brought forth during data collection. Participant responses are not limited to predetermined, forced-choice questionnaire responses. The researchers can be open and flexible to factors and concepts that emerge from the interview responses. The systematic data collection, emergent nature, and constant comparative analysis also allow the researchers to identify factors important to the participants.
The purpose of the study was to identify factors that influence physical activity; however, a universal definition for “physical activity” does not exist.17 Therefore, for this study, physical activity included a range of activities from participation on sports teams to unstructured, individual recreational activities. Participants were allowed to report on activities that he or she considered as physical activity.
Adolescents between the ages of 13 and 17 with a diagnosis of CF were eligible for the study. All participants with CF were recruited from the Mountain State Cystic Fibrosis Center at West Virginia University. Prior to participation, written informed consent and assent forms were signed by both the participants and their parents. This study was approved by the Institutional Review Board for the Protection of Human Subjects at West Virginia University.
An open-ended semi-structured interview guide (Figure (Figure1)1) was developed based on previously published work regarding psychosocial aspects of exercise, factors that may influence physical activity in children with CF,13 and guidelines for conducting semi-structured interviews according to the qualitative paradigm. The guide served to maintain consistency between interviews, but interviewers were allowed to probe using additional follow-up questions to glean additional information when appropriate. Graduate students performed the telephone interviews under the supervision of one of the principal investigators. Prior to actual data collection, students performed mock telephone interviews on each other under supervision. Any corrections or adjustments for interview technique, such as not leading participants and the use of appropriate follow-up comments, were made to the satisfaction of the principal investigators prior to any data collection. As participants were recruited, a graduate student was assigned to perform all interviews with that participant. Thus all participants were matched with a graduate student for all telephone contacts.
Two separate telephone interviews were completed with participants. The first interview was done according to the interview guide; however, interviews were conversational and performed in a manner to gather in-depth responses as to the participants' attitudes toward physical activity. Interviews were conducted at the participant's convenience, with 3 to 4 weeks between the first and second interviews. The initial interview served to elicit each participant's overall attitude toward physical activity and identify more specific attitudes regarding factors that influence willingness to participate in physical activity. Initial interviews were recorded and transcribed verbatim and transcripts were coded using the line-by-line coding process.18 This process allows the researcher to deconstruct the data into discrete pieces of information that could be compared and grouped into categories. In order to ensure the codes were actually derived from the data and not a result of a single researcher's bias, both principal investigators and the graduate student who performed the interviews participated in the initial coding process for each individual interview. In order for a code to be assigned to a response, the code had to be identified by both principal investigators and the graduate student.
Once an initial set of codes was identified for each interview, each participant was invited to participate in a follow-up interview. Performed by the same graduate student interviewer, the second interview served to allow participants to verify responses, clarify information, or to elaborate upon any response from the first interview. This is a procedure in qualitative research known as “member checking.” Second interviews were also recorded and transcribed verbatim. The line-by-line coding process was repeated to verify codes from the initial interviews, add detail to previous codes, and identify any new codes. None of the follow-up interviews yielded new codes so data collection was completed as it was said to have reached a “saturation point,” a point when no new codes are identified. Codes identified and verified were then clustered into conceptual diagrams based on similarities. Following the second interview, participants were mailed a $20 gift certificate in appreciation of their participation.
There were 3 male and 7 female participants in the study, with a mean age of 14.9 years (median = 14 years, range 13-17). There was a wide range of reported physical activities and lung function status at time of recruitment, as seen in Table Table1.1. All participants completed the first interview. After the first interview, 1 participant was unable to complete the second interview due to inability to be reached. Data from all participants from the first interview and from 9 participants from the second interview were analyzed. Initial interviews lasted no more than 10 minutes and the follow-up interviews lasted less than 5 minutes.
Facilitators of physical activity were defined as those comments made in response to the question “What were/are the things that make/made you want to exercise?” Barriers were defined as those comments made in response to the question “What were/are the things that made/make you not want to exercise?” Barriers or facilitators were operationally defined as “internal” if they were factors under control of the participants themselves, while “external” factors were things the participants could not control.
Factors that influence physical activity in adolescents with CF could be grouped into 2 main themes, facilitators and barriers to physical activity (Figure (Figure2).2). Facilitators could be further divided into 2 subthemes, perceived physical benefits and perceived psychological/mental benefits. The other main theme, barriers, could also be divided into 2 subthemes, internal and external barriers.
Perceived physical and psychological/mental benefits emerged as the most compelling reasons to participate in physical activity. All participants reported on his or her perception of physical health benefits associated with physical activity. Comments indicated that participants associate physical activity with immediate and long-term health benefits, including the importance of just “being healthy.” One participant indicated the importance of staying active at a young age so that you were able to be active in the future. More specific physical health benefits included improving endurance, managing weight, and building muscle. Participants also brought forth specific, disease-related factors that influenced his or her participation in physical activity (Figure (Figure3).3). Comments from these participants included:
“(Physical activity) clears me up so I can breathe better…I just bring up mucus and stuff and it will clear my lungs…it increases my health and lung capacity…If (teenagers with CF) sit around they are not going to actually do anything for themselves because exercise is part of the disease. If you don't get out there and exercise, you are going to be coughing all the time and not be able to bring up your mucus and you will just have a rough time with it. Basically, you have to exercise because it is good for you and helps you breathe.” (WW)
“I think (physical activity) expands my lung function so I am able to breathe a little bit better with everyday activities…I think (teenagers) with CF should be active because based on the statistics, it shows that it helps our lung function so I think we should be active.” (KF)
“If you don't exercise you are just going to get worse, so you might as well exercise and you'll get a little bit better.”(RT)
“(Physical activity) helps my lungs and stuff…It helps me breathe better…it keeps me active so I could always run around.”(TM)
“I mean sometimes it can make you short of breath…but the more you do it the more your body adjusts to it and it could be a good thing.”(CH)
The other subtheme that emerged as a facilitator of physical activity was the perceived psychological and mental benefit associated with being active. Examples of psychological and mental benefits gained included overall enjoyment of the activities, being able to participate in “fun” activities, an increase in energy levels, and having the sense of “feeling good.”
Participants stated – I want to exercise because:
“I like doing the activities… they are fun
…after I feel good.” (BE)
“After, I feel, you know, more energized
…it makes me feel better.” (CH)
“I can stay energized and stuff
…I feel good during it.” (TM)
“After, I feel good.” (KF)
“I just like to jump around and be hyper.” (SS)
“If you are tired you wake up.” (ML)
Barriers to physical activity were both internal and external (Figure (Figure4).4). Internal barriers that emerged included general physical discomfort, such as muscle soreness, fatigue, joint pain, and rapid heart rate. However, participants also gave examples of disease-specific physical discomfort, including coughing and becoming short of breath. Participants stated:
“I don't want to exercise when I get short of breath.” (KF and ZF)
“I don't do the activities I used to do because I get too out of breath…I would love to be able to run again, I get too out of breath and I used to love to run…now I get in a coughing spell and I can't breathe.” (KF)
“Just the drawback of getting out of breath if I am playing too hard makes me not want to exercise.” (WW)
“I have cystic fibrosis and that sometimes stops
me from doing things…it can make you short of breath.” (CH)
External barriers to physical activity were primarily activity-related. “Boredom” was reported most often as a barrier to physical activity. Comments from participants included:
“Well, the activities that I don't participate in, well, I don't like them, they are boring.” (BE)
“I get so tired of doing it…my body doesn't get tired…I get bored doing the same thing everyday.” (CH)
“I don't like to run…it is boring and not fun. But when I am doing something and I think ‘this is so fun,’ then I want to do it more.” (SS)
In this study we sought to learn, using qualitative methods, how adolescents with CF perceive physical activity. Our findings indicate that participants were readily able to identify facilitators and barriers and were able to express how physical activity affected their lives. We found that improving pulmonary symptoms was a frequently cited motivator to take part in physical activity for this group of adolescents with CF. This indicates that these adolescents understood how physical activity could improve their pulmonary health. In addition, enjoyment and personal satisfaction derived from physical activity were important motivators.
Little work examining attitudes toward physical activity has been done in CF. Stranghelle et al19 asked 11- and 14-year-olds with CF who were attending a camp in Norway to rate their liking of 30 sports and physical activities. They found these children generally found physical activity to be enjoyable. Recently, Baker and Wideman20 surveyed a group of adolescents with CF who were enrolling in an exercise program about the benefits and barriers to exercise, using a prepared forced-choice tool. They found that appearance, outlook on life, enjoyment, and the ability to keep up with peers were the most highly rated facilitators, while being too hard, embarrassment, taking too much time, and being too tired were the highest rated barriers. While both of these studies indicate that adolescents with CF viewed exercise positively, both used forced-choice questionnaires that did not allow a full exploration of attitudes and perceptions toward physical activity.
In our sample, physical activity was perceived to improve endurance and make one healthier. This is in agreement with work in healthy high school students who cited being in shape, being strong and increasing energy as most important reasons to exercise.21 Interestingly, while our participants cited enjoyment as a reason to be physically active, this was not rated very highly by healthy high school students.21
Barriers to regular participation in physical activity cited by our participants often related to pulmonary symptoms such as increasing cough or shortness of breath. This has also been seen in a study of exercise barriers in older adults with COPD.22 In a group of low-income African-American adults with diabetes, physical complaints such as joint pain, were perceived as common barriers to physical activity.23 Regular aerobic exercise has been shown to be an effective means of airway clearance, as well as decreasing coughing and dyspnea for patients with CF.2 Perhaps educating adolescents with CF about these beneficial effects of regular exercise on lung symptoms may decrease this barrier to participation.
Several participants also perceived poor motivation or disinterest as a barrier to regular physical activity. Others have found that internal motivators may predict physical activity. Blue24 found that intention to be physically active was associated with perception of the ease or difficulty of exercise in a group of adults at risk for diabetes. More work needs to be done to explore the internal motivators for physical activity in persons with chronic diseases such as CF.
We expected to find certain factors that would contribute to perceptions of physical activity in adolescents with CF based on studies in similar populations. For example, barriers such as time, shortness of breath, and weather were identified in a similar study focusing on adherence to exercise in adults with COPD.22 Likewise, Tergerson and King21 found that healthy high school students cited lack of time, wanting to do something else with their time and being too tired as the most common barriers to physical activity. We believed that these factors would also affect our population. However, neither lack of time nor weather was identified as a barrier by our participants. These participants did not perceive a lack of time as a barrier to incorporating physical activity into their daily lives. This is unexpected, given the time demands of managing a chronic disease like CF.
None of our participants discussed the influence of parents on their participation in physical activity. A qualitative study by Boucher et al25 supported these findings as participants with CF aged 12 and older reported their own physical activity level to be 24% higher than estimated by their parents. Though these studies show that there is a discrepancy between parental and adolescent perceptions, the participants in our study did not indicate that their parent's perceptions influenced their physical activity. Perhaps, as adolescents, they were unwilling to admit being influenced by their parents. This suggestion is in line with Tergerson and King,21 who found that parental influence was not a strong motivator to exercise for healthy high school students. More work needs to be done to elucidate the influences of family, peers, medical caregivers and others on physical activity behavior for adolescents with CF.
The results of our study are limited in their generalizability because a small sample of convenience from a limited geographic region was studied. There may be factors unique to the region which influenced participants' perceptions of physical activity. This work should be replicated in more diverse settings. Future research in this area can be expanded in 2 ways. First, qualitative interviews could be conducted in different regions, climates, and health care systems to broaden the knowledge about factors which influence physical activity in persons with CF. Secondly, themes identified in our study could be used to develop a quantitative instrument about physical activity that could be administered to a larger, more heterogeneous group. Additional studies that examine the influence of lung disease severity on physical activity perceptions are needed. For example, it is possible that an individual with more severe lung disease would have different perceptions about physical activity than one with mild lung impairment, although we did not see this in our small sample with a wide range of lung function.
The findings of our study provide important insight into perceptions about physical activity in adolescents with CF. We found that participants readily verbalized the importance of physical activity for maintaining both overall health and for improving lung symptoms and energy levels. The participants in our study viewed physical activity as enjoyable; however, many also stated that they were unlikely to participate if the activity was boring, if they disliked the activity, or if it exacerbated their lung symptoms. In conclusion, clinicians and caregivers should work together to create an individualized physical activity plan that accentuates facilitators and decreases barriers for physical activity participation. Further work is needed to determine the optimal approach to doing so.
This project was supported by the Cardiovascular and Pulmonary Section, APTA Research Grant. The authors wish to thank the following physical therapy students for their assistance with data collection: Jessica Chapman, Jaimie Dayoub, Eric Melody, Elisha Scott, and Amanda Vance. We also wish to thank Dr. Kathryn Moffett for allowing us to recruit subjects from her clinic.