Factors Influencing Physical Activity in Adults with Cystic Fibrosis

DOI: https://doi.org/10.21203/rs.3.rs-112649/v1

Abstract

Background: Despite the well-established physical and psychological benefits of physical activity (PA) for cystic fibrosis (CF) populations, adherence to PA programmes within this population remains low. This study aimed to investigate the factors that influence engagement in physical activity, and to explore exercise preferences, among adults with cystic fibrosis.

Methods: Semi-structured telephone interviews were conducted. Participants were twenty-one adults (mean age 35 years, SD ± 8) with an established diagnosis of CF, living in Ireland. Interview scripts were digitally recorded and transcribed verbatim. Thematic analysis was used to analyze the data.

Results: Four main themes emerged: barriers, motives, value of exercise-related outcomes, and exercise preferences. The main barriers included: fatigue, low energy levels, time, the weather, and exercise-related confidence. Motives for regular physical activity participation included: enjoyment and perceived competence. Participants who were regularly active valued personally identified exercise-related outcomes such as, accomplishment and affect regulation. Participants indicated a preference for home-based physical activity programs compared to gym- or facility-based programs.

Conclusion: Interventions aimed at promoting physical activity among adults with CF should involve home-based programs that foster autonomous motivation confidence, enjoyable activities, personally identified outcomes and competence.

Clinical Implications: To increase physical activity participation among adults with CF, home-based interventions that pay attention to the patients’ personally-valued exercise outcomes may be required. Wearable technology that provides real-time feedback may enhance feelings of competence and accomplishment, found to underpin autonomous motivation.

Background

Cystic fibrosis (CF) is a progressive, multi-system, inherited condition affecting approximately 1,400 people in Ireland, and more than 70,000 worldwide (1,2). CF is caused by a mutation in the CF transmembrane conductance regulator (CFTR) gene. The CFTR protein regulates the movement of chloride and sodium ions across epithelial cell membranes (3). When mutations occur within the CFTR gene, ion transport is defective, resulting in the accumulation of thick mucus in the epithelial layer of the hepatic, respiratory, digestive and reproductive systems (3–5).

Today, with advancements in early diagnosis and the development of highly effective CF transmembrane regulator modulator therapies, people with CF are living longer (6,7) . As such, increased emphasis is being placed on improving lifestyle-related behaviours in order to enhance long-term health in adults with CF (8) .

Aerobic fitness has been shown to be an important predictor of survival in individuals with CF (9) . Those who have a higher aerobic capacity (VO2 ≥ 82% predicted VO2max) have an increased survival rate of 83% at 8-years, compared to 51% and 28% survival with moderate (59-81% predicted VO2 max) and low fitness (≤ 58%), respectively (10). Regular participation in physical activity (PA); performing 150-minutes/wk, and preferably 300-minutes/wk of moderate-to-vigorous PA (1) improves a myriad of outcomes in CF, such as exercise tolerance (11) , airway clearance (12) energy levels (13) and quality of life (14) . Sustained PA also has the potential to slow the annual rate of decline in pulmonary function (15) .

Despite the established benefits of PA for individuals with CF, adherence to PA programs within this population can be poor (5,15) . In order to develop the optimal PA program for individuals with CF, a better understanding of patient attitudes towards PA is needed to elicit sustainable lifestyle behaviours (8) .

To the best of the authors’ knowledge, only two studies have investigated the factors influencing exercise participation in adults with CF (8,16). These studies found that motivators for sustained PA included enjoyment, motivation and being educated about the benefits of regular PA. Feelings of breathlessness, fatigue, reduced energy, and embarrassment when exercising in public were among the most common barriers reported. Lack of motivation and time were also reported as disadvantageous (8,16) .

The purpose of this study was to explore the attitudes towards, and dimensions influencing, PA participation in Irish adults with CF.

Materials And Methods

The current study conformed to suggested guidelines by Clark in appropriateness of method, transparency of procedures, and soundness of approach (17) .

Participant recruitment

Convenience sampling was used to recruit adults with an established diagnosis of CF. An email including a patient information leaflet was circulated by CF Ireland, the national CF charity, to all adults with CF on the registry in Ireland (n=861). Following an expression of interest, written informed consent was obtained in accordance with the Dublin City University (DCU) Research Ethics Committee (DCUREC/2018/141), conforming to the principles of the Declaration of Helsinki.

Data Collection

Semi-structured telephone interviews lasting up to 30-minutes were conducted. An interview guide was developed based on previously published work (18) , regarding the factors that may influence PA in adults with CF. Interviews were digitally recorded and transcribed verbatim. 

Data Analysis

Data were analyzed inductively using thematic analysis, which involved several steps (19) . The first step involved active and repeated reading of the transcripts to gain an insight into the data, and to explore initial codes and themes. The second step involved systematically coding features of interest within the data. The third step involved exploring whether codes may be collated to form over-arching themes. The fourth step involved reviewing and examining potential themes for coherency within the data, ensuring the experiences and opinions of participants were accurately reflected. The final step involved the refining and defining of themes. A second researcher experienced in qualitative data analysis served as a second reader of the transcripts and offered further insight with respect to emergent themes to broaden data interpretation. The analysis offered is our interpretation of the interviewee’s meanings and experiences, and we acknowledge that other interpretations are possible. Nonetheless, we aim to offer a reliable interpretation of participants’ perceptions and experiences.

Results

Twenty-one adults (57% males) with an established diagnosis of CF participated in the study. The mean ± SD age of subjects was 35 ± 8 years, with 16% of participants having undergone lung transplantation. Participants’ characteristics and demographics are outlined in Table 1. 

Data analysis identified four key themes relating to factors that influence PA engagement in adults with CF: (i) PA barriers underpinned by five subthemes including fatigue, energy levels, time, weather and exercise-related confidence; (ii) motivation with sub-themes of enjoyment and perceived competence; (iii) value of exercise-related outcomes, underpinned by sub-themes of accomplishment and affect regulation; and (iv) exercise preferences. Each quote is followed by a pseudonym and the individual’s age. To further contextualize the data, additional quotes are provided in table 2.

Barriers to PA participation

Participants reported both internal and external barriers to PA participation. The most common internal barriers included fatigue: “There are some days where I’m just really mentally drained…So, the idea then of having to get up on a bike can be a huge barrier because I just feel so exhausted” (Amy, 32); “I’ll just be generally really tired…so that might get in the way of being motivated, I don’t want to push myself (Dorothy, 29), and low energy: “Energy would be a big one. Sometimes I’ve just enough energy to get up and do my nebs, and I don’t really have the energy to do other things” (Hannah, 50). Participants also reported barriers pertaining to exercise-related confidence, such as self-consciousness: “In gyms and public when you’re coughing, there’s people looking at you to say what is wrong with you?” (Eric, 50), and concerns of capability; “The thing that turns me off PA is the fear of not being able to do [it], if that makes sense? Everyone in the class is jumping up and down on the step and I’m like oh my God, I can’t keep up” (Hannah, 36).

External barriers to regular participation in PA included time: “I just generally don’t think I get the time” (Mary, 30); “Essentially it’s time. Time is the major one for me… prior to the kids…I was getting much more exercise, but time is the main thing” (Richard, 49); and the weather: “The weather here in Ireland is just…you could plan to go and have a round of golf, or play tennis at the weekend, and then it’s raining all day so that stops that” (Matthew, 28); “If the weather is bad, my motivation is squat. I’m very much a fair-weather walker, you know?” (Jenny, 44).

Motivation

Motivation was a dominant theme identified throughout, with several participants displaying higher levels of motivation: “I’m always very self-motivated actually, I suppose from a young age I always kind of realised that…, it’s me that’s going to do it, nobody else can do it for me” (Amy, 32); “I’m very self-motivated, I don’t need somebody shouting at me in a gym” (John, 31), compared to others who were primarily motivated by external drivers, such as guilt: “It’s more guilt than anything I have to say. I go through stages of doing it but it’s guilt more than anything else” (Eric, 50); and “It’s hard to keep motivated because you know you have to do it” (Mary, 30). Enjoyment and perceptions of competence appeared to underpin PA motivation.

Enjoyment underpinning motivation

Participants who expressed positive attitudes towards and enjoyment of PA: “It’s always been a positive, I have been really active most of my life now” (Kevin, 33); “Yeah, very positive. I feel the more exercise I do, the better I feel” (Richard, 49), seemed to engage in more regular PA: “I go to the gym five days a week; I do twenty-five minutes of cardio and then I do one particular muscle”” (Kevin, 33), and “I’m very active, I’d get up at 7 o’clock I go for a 3km run…then in the afternoon I go to the gym for an hour weight session. And I do that for 2 days and then I have the third day off…then I go through all that again” (Robert, 41). Exercise enjoyment appeared to be a motivating factor for adherence: “I think the main thing is to do something you enjoy. Anytime I’ve been successful at kind of maintaining sport, it’s just doing something I enjoy” (William, 34); “I suppose …the main reason is, I enjoy it” (Matthew, 28).

In contrast, some participants reported a lack of enjoyment as a reason for their physical inactivity: “None of it. I’m going to be very honest with you, I do not enjoy PA at all” (Eric, 50); “To be honest, I don’t particularly enjoy it!” (Mary, 30); “Mainly, I just don’t like exercise” (Peter, 19), which was typically underpinned by poor engagement: “At the moment I would say my PA is pretty much zero… I haven’t been doing much exercise” (Peter, 19), and/or negative past experiences with PA: “Very negative. For me, PA was just hard” (Jenny, 44); “I suppose negative. I wouldn’t be going to the gym. I wouldn’t be interested in any of that” (Eric, 50).

Perceived competence underpinning motivation

Several participants reported high levels of perceived competence that appeared to underpin their exercise motivation: “You know, even though I have this illness, I never really felt like I did because it really didn’t keep me from setting records on the leader board when I was younger…I was very fast” (Carol, 36): “But it’s just the realization that I am as fit as most of them in the room and it’s at that… and keeping that level up, it’s keeping me on par with most of them in the room and for my own benefit as well” (Robert, 41); “I know I’m well able to do it” (Emily, 50).

 Other participants did not identify as being the sporty or exercise type : “I’ve probably never been that person. I was never a sporty person” (Jenny, 44); “Exercise wouldn’t be in my remit. I wouldn’t be interested in any of that. I wouldn’t be a gym bunny; I’d be far from it. As far away from it as you can imagine” (Eric, 50), and expressed low perceived competence in their ability to perform PA: “I’ve been thinking a lot about this, and it’s not being able to do it. The thing that turns me off PA is the fear of not being able to do the activity if that makes sense” (Hannah, 36).

Value of exercise-related outcomes

The majority of participants who were regularly physically active reported exercise-related outcomes, such as accomplishment and affect regulation as drivers for continued engagement in PA. Many of the participants identified with the importance of keeping healthy: “I mean, just being healthy and not getting sick. Feeling good…and my lung functions being good, that motivates me” (Brenda, 35); “To try and stay as healthy as possible is a motivator” (Richard, 49); “I just realise that if I want to be healthy and if I want to live a kind of normal life, I have to do this…so that pushes me to keep myself as healthy as I can be” (Robert, 41).

With several participants being motivated by a sense of accomplishment: “I do like it in the end…when you feel like you have accomplished something” (Mary, 30); “I like…the feeling after that you have accomplished being able to physically do an activity” (Emily, 50). Affect regulation emerged as a key influencing factor among participants who regularly engaged in PA: “I like how it makes me feel good and I’m always in a better mood, like it releases endorphins and I’m a happier person afterwards definitely” (Brenda, 35); “Just how you feel after doing them, you just feel well and it’s good for everything, not just CF, but your mental health and everything…whether you are sick or not, you do feel great about yourself” (Paul, 30). 

Exercise Preferences

The majority of participants reported a preference for exercising within their home environment, as opposed to the gym: “I love doing my treadmill and stuff at home…it reduces the risk of infection as well” (Mary, 30); “At home, just because it’s less time consuming and less daunting… it’s easier than going to the gym…if your treadmill is sitting there looking at you” (Dorothy, 29); “Home-based…like it can be stressful for me to go to the gym…it’s germy and noisy and if you don’t feel well you kind of just want to leave once you get there” (Carol, 36).

The concept of attending a gym was perceived negatively by a large number of participants, due to the risk of cross-infection: “They say the worst place to pick up germs that are bad bacteria is in the gym, because everyone is in there sweating. And people that feel sick still go to the gym and they are coughing all over the place and sweating and that kind of puts me off” (Robert, 41); “Going to anything like a gym I just have total war against…I think they’re a hive of infection. I think they’re the most unclean environments you could possibly get”, and illness-related embarrassment: “I don’t like when people listen to me coughing when I’m in the gym…and if I have any secretions, at least if I’m at home, I’ll get rid of it there” (Mary, 30); “Going to the gym, especially on Oxygen and things is quite intimidating for people…it’s very easy to feel self-conscious so, I think home programmes for people… might help” (William, 34).

Many participants highlighted the Exercise Grant, made available biannually by CF Ireland, as a beneficial tool for enabling home-based exercise: “I have a treadmill at home that I was able to get through the CF Ireland Exercise Grant, which is fantastic, and that is what I would use at home. And, I have got a few little weights…it’s easier for me than driving to the gym, which takes more time out of my day” (Emily, 50), and “From a CF Ireland point of view, the Exercise Grant is really good because it can kind of help with the financial burden of exercise” (William, 34).

Discussion

The present study is one of the first to explore factors influencing PA in adults with CF. The main barriers among participants were internal (fatigue and low energy), external (time and the weather) and related to exercise confidence (self-consciousness and capability). The findings of the current study are consistent with previous research which found that the lack of energy and time, and bad weather contributed to poor PA compliance among adults with CF (8,16) and COPD (20) . Exercise-related confidence as a barrier to sustained PA engagement among adults with CF is a novel finding.

Motivation was a dominant theme underpinned by enjoyment and perceived competence, and appeared to differentiate between those more and less physically active. Specifically, those who reported positive past experiences with PA, higher levels of perceived competence, and more autonomous forms of motivation appeared to engage in more frequent and sustained PA. In contrast, those who reported negative past experiences with PA and lower perceived competence appeared to be less physically active, linked to feelings of external or introjected regulation. Our findings support the self-determination theory (SDT) in relation to the innate psychological needs (specifically competence and autonomy) that must be satisfied in order to be autonomously and more intrinsically motivated (21) . According to SDT, controlled motivation is when individuals are motivated in order to satisfy some form of external pressure (e.g., physician) or internal pressure (e.g., sense of guilt). Some participants in the current study that were notably less motivated to exercise reported motives driven by extrinsic factors and reported participating in PA to avoid feelings of guilt (introjected regulation). More autonomous motivation is achieved when the individual values health or physical fitness, or when the behaviour (PA) is consistent with his or her ambitions in life or identity (identifying with valued outcomes). Indeed, the present study found that valued exercise-related outcomes were drivers for continued exercise participation amongst participants who appeared to be more regularly physically active. Consistent with SDT and previous research, more autonomous motivation rather than controlled or externally driven motivation are associated with regular exercise behaviour (22,23) . The strongest predictor of exercise maintenance is personally valued outcomes (23) . Participants in the present study who appeared to be more regularly active reported affect regulation as a motive for continued engagement in PA. The role of exercise for affect regulation is a novel finding.

A key finding was that most participants expressed a preference for home-based, rather than gym- or facility-based PA. This is notable, since home-based interventions have the capacity to potentially ameliorate feelings of low perceived competence, self-consciousness and remove barriers associated with time and changing weather (24) . Tailoring PA programmes according to patient preferences and psychographic profiling (25) may optimise uptake and adherence.

Conclusion

Barriers to PA engagement in the current study were fatigue, low energy levels, time, the weather, and exercise-related confidence. An important finding was the preference for home-based rather than gym- or facility-based PA. Effective interventions will likely require the promotion of autonomous motivation, enjoyable activities, personally identified outcomes and competence among adults with CF.

Clinical Implications

The reported barriers to PA may be modifiable. For example, self-consciousness and low perceived competence could be mitigated through the provision of mastery experiences to provide a sense of accomplishment and competence. Home-based interventions that focus on PA rather than exercise or sport may help alleviate feelings of self-consciousness and low energy. Future exercise interventions that focus on fostering autonomous motivation confidence, and personally identified outcomes would be worthwhile.

Providing healthcare professionals with additional training in the use of activity counseling and motivational interviewing may have the potential to increase autonomous motivation, and decrease external regulation, toward PA among patients with CF (4) and has been recommended in other patient cohorts.

Given the findings in relation to participants’ motives and exercise preferences, home-based interventions hold much promise in addition to overcoming the barriers associated with facility-based exercise programmes, such as the fear of exercising in public and the risk of cross-infection. The introduction of smart wearable devices, providing real-time feedback, in future interventions may help in developing feelings of competence and a sense of accomplishment which have been found to underpin autonomous motivation.

List Of Abbreviations

PA: physical activity

CF: cystic fibrosis

Declarations

Ethics approval and consent to participate

This study was approved by the Dublin City University Research Ethics Committee (DCUREC/2018/141). Written consent was obtained to confirm participation. I confirm all patient/personal identifiers have been removed or disguised so the patient/person(s) described are not identifiable and cannot be identified through the details of the story.

Consent for publication

Not applicable

Availability of data and materials

The datasets used and/or analysed during the current study are available from the corresponding author on reasonable request

Conflict of Interests

The authors do not have any competing interests to declare. The authors have full control of all primary data and agree to allow the Journal to review the data if required.

Funding:

This research was funded by Cystic Fibrosis Ireland and the Mater Foundation, who provide fee and stipend funds for the lead author.

Author Contributions:

All listed authors (NH, NM, BK, NMC, KR and SH) were involved in the conceptualisation of the research design. NH conducted data collection. NH and SH were involved in data analysis and in the writing of the manuscript. BK and NM managed the project. BK, NM, NMC and KR were consulted when reviewing the manuscript prior to submissions. All authors have read and approved of the manuscript.

Acknowledgements:

We wish to thank each of the participants for volunteering their time to participate in the study, and Cystic Fibrosis Ireland for their assistance in recruitment. We wish to sincerely thank for Cystic Fibrosis Ireland and the Mater Foundation for funding this research.

References

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Tables

Table 1. Participant demographics

ID Code

Pseudonym

Gender

Age

Transplant Status

1

Paul

Male

30

No

2

Mary

Female

30

No

3

Jenny

Female

44

Yes

4

William

Female

34

Yes

5

Richard

Male

49

No

6

Matthew

Male

28

No

7

Susan

Male

33

No

8

Robert

Male

41

No

9

Emily

Female

50

No

10

Dorothy

Female

29

No

11

Carol

Female

36

No

12

Kevin

Male

33

No

13

Amy

Female

32

Yes

14

Eric

Male

50

No

15

Brenda

Female

35

No

16

Frank

Male

26

No

17

Peter

Male

19

No

18

Keith

Male

38

No

19

Hannah

Female

36

No

20

John

Male

31

No

21

Jason

Male

35

No


Table 2. Overview of themes and illustrative quotes

Theme

Illustrative quotes

Fatigue and low energy  levels were dominant internal barriers to PA engagement

“It’s just because I know  it will be tiring” (Jenny,  44)

 

“Just when I’m feeling unwell, lack of energy.  Most days I don’t be in the mood to go to the gym, just through fatigue and tiredness” (Robert,  41)

 

“Low energy, if I’m not feeling the best, I’d use that as an excuse” (Emily, 50).

 

“Some  days I’m just absolutely wrecked, like I can be so tired. I just don’t  want to move, just don’t want to go out, sometimes I  don’t even want to sweep  the floor in the house, it’s that type of…just comes out of nowhere” (Paul,30)

 

“Energy wise, yeah,  I find my energy levels are  even when I wake up in the morning  are low” (Keith,  38)

 

“I have just started college and on the days where I'm in, I know that I don’t have the energy to work out and a full day in college on the same morning” (Dorothy, 29)

Time and the weather were dominant external barriers to PA engagement

“it’s probably like time and weather” (Frank, 26)

 

“I suppose time is one thing, obviously having CF and working full time and family it’s tough” (Keith, 38)

 

“Time is definitely one as well” (Hannah, 36)

 

“I work kind of in the evenings times 3 to 11 at night. So going to the gym I have to be up early to kind of go in and get to the gym early. And I have no problem with doing that, it’s just at times you wake up and you feel so exhausted from work that it’s just too difficult. Whereas if I had a schedule around 9 to 5, I’d go to the gym on the way home I’d do it more often” (Jason, 35)

 

“The weather is getting bad, so, going to be stuck in doors more, will be hard to get up there, the motivation might slack a bit” (Paul, 30)

 

“My motivation if the weather is [bad], my motivation is squat” (Jenny, 44)

 

“As I say that’s weather depending” (Richard, 49)

 

“The Irish weather I find is a barrier for me to get to be physically active” (Matthew, 28)

 

“I don’t walk in torrential rain and… the winter months” (Jenny, 44)

Positive past  PA experiences  were  typically associated with more regular PA participation, driven predominantly by enjoyment

“Positive,  from the age of about, when I was in school  and stuff, and I was  always playing sport,  I was always playing football” (Robert, 41)

 

“Positive, I always try to keep active…I  have always kind of done it throughout my life” (Emily,  50)

 

“So, as a kid, I wouldn’t have noticed any difference from anyone else, I don’t think. Very active” (Hannah 36)

 

“So, if I go for a run first thing in the morning it helps me clear all the mucus and stuff in my lungs. Then the afternoon I go to the gym for an hour weight session. And I do that for 2 days and then I have the third day off.  And then I go through all that again.”  (Robert, 41)

 

“I usually try and go to the gym 3 mornings a week and that would include 2 spinning classes and a hit class, high intensity class. So they would each last approximately 30 minutes each but they would be quite physical.” (Emily,  50)

 

“Yes, so at the minute I am exercising probably 5 or 6 days a week…I would run on the treadmill for about 10 or 15 minutes depending on how I'm feeling between 6 to 7.5 miles, that’s like speed wise. So, then I’d do some weights I do the sit ups”  (Dorothy, 29)

 

“I've always really enjoyed the exercise.” (William, 34)

 

“I do enjoy the physical aspect of it, I enjoy putting my music on and just running the treadmill” (Dorothy, 29)

 

“it’s fun and it’s enjoyable” (Carol, 36)

Value of exercise-related outcomes: accomplishment and affect regulation  

“I enjoy kind of the buzz you get…the way it clears your head…you kind of feel better afterwards” (William,  34)

 

“I like the buzz you get and the feeling  after that you have accomplished being  able to physically do an activity, everyone in the room…they don’t  know I have mild CF and I kind  of look and say, god I am able to keep up with them” (Robert, 41)

 

“Sometimes it is the best medicine for you, you go off burn some calories, get a sweat on and you do feel the better for it” (Emily, 50)

 

“I like the benefits  of  it,  the  immediate effects of it and the long term effects, just keeping the lungs healthy I have to  say that’s my main benefit from it” (John, 31)

 

“The great  feeling  you have after doing  some  activity really that you feel you got loads of energy, you feel like you have actually done something  healthy” (Jason, 35)

 

“Makes you feel good, even if you are stressed out at home or you had a bad day… just relieving that stress you have, even if you are tired and you think ah can’t be bothered… you always feel better after it and you say you are kind of glad [you] went” (Robert, 41);