Parkinson’s disease (PD) is a common neurodegenerative movement disorder for which there is no cure. More than half a million people in the United States are living with PD, and this number is expected to double by 2040, as the population ages and prevalence rates increase exponentially (Kowal, Dall, Chakrabarti, Storm, & Jain, 2013). Given increasing longevity and an incurable condition where average age of onset is around 60 years, an increasing number of people will likely live longer with loss of motor skills and deficits in movement and coordination, joint stiffness, and postural instability (Snyder & Adler, 2007). For the person with PD, this may result in years of physical and psychological burden, in addition to the financial costs for both the person, their family, and society (Kowal et al., 2013).
Although pharmacotherapy is the main treatment modality, strong evidence supports the benefits of exercise as adjuvant treatment (Atterbury & Welman, 2017; Ayan, Varela, Vila, Seijo-Martinez, & Cancela, 2016; Goodwin, Richards, Taylor, Taylor, & Campbell, 2008), including supervised community-based group exercise programs (Atterbury & Welman, 2017). Maintaining attendance in an exercise program is more challenging for people with PD, given the progressive nature of the disease and associated symptoms like mood changes, sleep disorders, and depression that can negatively impact daily function (Snyder & Adler, 2007). In addition, people with PD may not even enroll in an exercise program because they do not expect to benefit from doing so (Ellis et al., 2013). Because maximizing activity and minimizing inactivity is paramount for the person with PD, understanding what features of an exercise program encourage enrollment and maintain attendance is important. Ellis et al. (2011) explored influencing factors among ambulatory community-dwelling people with PD and found that self-efficacy was a stronger motivator to exercise than their disability was a barrier (Ellis et al., 2011). Furthermore, high self-efficacy doubled the likelihood of engagement in exercise, suggesting that supporting and enhancing a person’s belief in their capability may positively impact their attendance. Consistent reassurance and support was a primary theme in a qualitative study by Crizzle and Newhouse (2012) that examined motivators and barriers to completing a 6-week exercise program in this population. In addition, the opportunity for socialization and interaction with other people with PD and exercising in a group decreased stigma and increased the participants’ confidence (Crizzle & Newhouse, 2012). Although the participants were able to complete this short program, people with PD live for many years as their disease progresses, so they should continue to exercise for as long as possible.
Few studies have explored motivators and barriers to attendance in exercise programs beyond 6 months. A randomized study by Park et al. (2014) comparing the effect of early versus late exercise on disease progression found high satisfaction and enthusiasm among the participants for a group program, some of whom continued to exercise together after completion of the 48-week study (Park et al., 2014). Although there was very low attrition in this study, data collection was limited to 48 weeks. Furthermore, the purpose of the study was to measure the effect of the exercise and not to explore the reasons the participants maintained attendance. Therefore, a qualitative approach in this group may provide additional insight and information about motivators and barriers to exercise, especially among longer attendees. This knowledge can inform providers about needed program modifications or adjustments to maintain attendance, decrease attrition, and ultimately benefit the person with PD. Limiting attrition is more significant among this population because high attrition could diminish the social connection and interaction that encouraged attendance in the first place (Crizzle & Newhouse, 2012). Therefore, the aim of this qualitative study was to explore the reasons a group of people with PD continued to regularly attend a community-based group exercise program.
A phenomenology research design was used to explore participants’ motives for maintaining attendance in the exercise program. Data analysis was conducted using the qualitative content analysis method described by Graneheim and Lundman (2004) that interprets data systematically, allowing expression of the underlying meaning to emerge.
Prior to the interview, participants completed a demographic questionnaire and a four-question section related to PD, and an additional questionnaire. These quantitative data were reported elsewhere along with some aspects of the qualitative interviews in a mixed methods study (Rossi, Torres-Panchame, Gallo, Marcus & States, 2018). All interviews were conducted by one faculty member who supervised the program and had experience in qualitative research. Narrative data were collected by in-depth interviews lasting for 30–45 minutes using either one-on-one or group interviews of two to four participants based on participant availability and logistics such as transportation; each participant was interviewed once. Semistructured open-ended questions (For representative samples, see Table 1) adapted from a qualitative study in the same population (Crizzle & Newhouse, 2012) were developed prior to the interviews to ensure broad coverage of the topic. At the conclusion of the interview, participants were asked if they had anything further to add. In addition, as tentative categories emerged, follow-up probes were added to further explore, validate, and clarify potential contradictions between participants’ perceptions about the program.
Sample and Setting
A predetermined sample was set at 25 participants to ensure a wide variety of content and variation within the data (Graneheim, Lindgren, & Lundman, 2017). All participants who met the inclusion and exclusion criteria were offered an opportunity to participate. Inclusion criteria included a PD diagnosis of Hoehn and Yahr Stages 1–3 (Hoehn & Yahr, 1967), regular attendance (at least 50% within the past year) in the program, ability to travel from their home to the exercise facility, competence to provide informed consent, and English-speaking. Exclusion criteria included inability to provide informed consent, non-English-speaking, and inability to verbally communicate clearly. There was no minimum or maximum period for enrolment in the program. Twenty participants volunteered from the attendees in the program; 18 met the inclusion criteria. Written consent was completed prior to the interviews that were conducted in a private area separate from the fitness room.
In 2008, a supervised group exercise program specifically for people with PD was initiated at a university campus (States, Spierer & Salem, 2011). The program, which continues to recruit new participants, consists of three 10-week sessions and is offered free to participants with PD who have medical clearance from their provider. All participants are evaluated at enrollment and then yearly and must have updated medical clearance at each evaluation to remain in the program. The exercise class, scheduled twice a week, includes two similar back-to-back 1-hour sessions; participants can attend one or both days of the week and choose either the early or late class. The participants who attend vary from week to week; the format of each exercise class is identical but includes varied modes of aerobics, flexibility, resistance and neuromotor exercises that target different muscle groups and can be adapted to people with functional limitations. The participants are encouraged to participate to their maximum functional ability and students offer assistance to help them achieve this.
Each exercise session provides the option of joining one of two back-to-back fitness classes consisting of warm-up, stretching, floor exercises for core muscles, and balance exercises involving weight shifts. Participants who arrive early or late for one of the exercise classes have the opportunity to use the strength training or cardio equipment while they wait for the next class. A certified fitness instructor who has been with the program since its inception and is experienced in working with people who have physical limitations leads the classes assisted by students enrolled in a health professions program and faculty supervisors. Students receive 5 hours of training on the program prior to starting each semester and are supervised and evaluated throughout their 10-week rotation. Because each participant’s level of function is different, modifications such as sitting, instead of standing, are made. In addition, students are assigned to work one-on-one with participants who use adaptive devices such as canes or walkers or those who need additional direction during the exercise class. Each participant has a formatted paper record documenting amount of weight, number of repetitions, and duration and level of resistance on aerobic equipment. The participants’ records are carried over from one session to the next to allow for comparison of progress. Daily attendance in the program ranges from 15 to 20 participants, with three supervising faculty, 7–10 students, and the certified trainer to supervise and assist the participants. Faculty from the schools of health professions and nursing are responsible for training students, supervising the program, and conducting the annual evaluations (States, Sweeny, Rossi, Spierer, & Salem, 2017).
The study was approved by the institutional review board of the university. Potential participants were informed that their decision would not affect their ongoing participation in the fitness classes if they declined study participation. No payment or any other reward was offered to the participants. At the outset of the interviews, participants were asked to state their participant number and were instructed not to use their name during the interview. All data pertaining to the study were stored confidentially.
Following the digitally recorded interviews, data were transcribed verbatim by a research assistant and then cross-checked independently by three faculty members for accuracy by comparing the transcript with the audio recording. To address potential bias, neither the interviews nor the transcriptions were conducted by the lead author, who had previously conducted phenomenological research. Furthermore, participant names were not transcribed; the lead author had only brief contact with the participants prior to the study and limited experience dealing with people with PD. Data analysis, as described by Graneheim and Lundman, required reading and rereading the narrative interviews to identify related words or statements, then condensing the statements to a few words to represent the central meaning of the text. Codes were created from the condensed phrases, compared for similarities and/or differences, and then grouped together into subcategories and categories that represented the obvious or manifest content. Underlying meaning was examined, and themes were created that represented the latent content or what the text was talking about (Graneheim & Lundman, 2004). Trustworthiness was achieved throughout the research process in a number of ways. Although all the participants were living with PD, individual differences in age (60–76 years), years attending the exercise program (1–8.25 years), and time since diagnosis (1–28 years) increased the likelihood that a variety of experiences would be expressed, and this enhanced credibility and transferability. Participant quotations, code creation, and abstraction of categories and themes further demonstrate credibility and authenticity of the findings (Graneheim et al., 2017). Strategies such as use of audio recording, verbatim transcription, and searching for discordant views among the participants were applied as data analysis progressed (Polit & Beck, 2018). Additional questions were posed to allow deeper exploration of participants’ perceptions and provide an avenue to search for disagreement and contradiction among the participants. During data analysis, as categories began to emerge, a further search was conducted to ensure that no data were excluded for lack of a category or fit into multiple categories (Graneheim & Lundman, 2004).
The 18 participants included nine men and nine women whose characteristics are described in Table 2. Four major themes emerged from the data that revealed what aspects about the program motivated and maintained their attendance. These themes were as follows: (1) changing and challenging workout; (2) gaining strength, inspiration, and knowledge and doing it among friends; (3) professionals, not amateurs; and (4) holistic lasting benefit (Table 3).
Changing and Challenging Workout
Many of the participants had been attending the program for several years, yet they were continually surprised by the diversity and ongoing changes within the program which they believed was due to the skill of the instructor. Participants appreciated the inclusion of different types of exercises that targeted strength and balance, which they thought important to maintaining their level of function, but the routines did not become routine.
P3: I’ve never had other instructors but she makes every session interesting and different, it’s never the same boring.
This diversity and opportunity to do several different types of exercises within the same exercise session was an additional motivating factor, which participants felt made each class well rounded and complete. This addressed the diverse needs of the participants who present with a wide range of symptoms and limitations and lessened their need to attend multiple programs as some participants had done prior to enrollment in this program.
P16: The class is good because of the aerobic and the stretching and the strengthening. I think it’s good that she changes it up a lot sometimes we do different types, sometimes it’s strength training, sometimes it’s endurance, sometimes stretching and I’m glad she switches it around.
In addition to the instructor’s skill and knowledge about their deficits, many participants believed that careful planning by the instructor was responsible for keeping the program varied and interesting.
P12: She spends a lot of time thinking about the goals, the goals on the particular morning, I get it and I see how it comes together.
Despite the enthusiasm for the varied routine, many participants were realistic about how difficult some exercises were and how hard they had to work to complete the routines but saw direct benefit in their daily lives, and this encouraged them to continue.
P6: It’s a great workout. All of us break a sweat, we all remark to each other how nothing that we do exercise-wise is as hard or as intense.
P16: It’s (exercise class) a little bit harder than I can do, but it’s all stuff I can kind of do, you feel free and safe to try to do things, and you find that you can do way more things than you thought you could, because of that environment.
Gaining Strength, Inspiration, and Knowledge and Doing It Among Friends
The variety and challenge of the workout alone did not seem to be the only motivating factor for ongoing attendance in the classes, and as noted, the routines were hard. Doing these difficult exercise routines among people experiencing the same challenges inspired many people to continue, when they may have considered stopping or dropping out.
P9: Yeah I think we all feel inspired by each other, I always feel inspired by (participant) because she always like pushes herself through things I would never push myself through.
P10: You know when you’re looking in the mirror and you see other people struggling with what you struggle with, you say oh good it’s not just me.
The opportunity to exercise among people in the same situation as themselves increased their comfort level, and this was a motivator to start the class as well as continue, even for those who did not like exercise or who had not exercised before they were diagnosed with PD.
P16: There’s a benefit in the fact that it helps you maintain your motivation, especially if you’re not a jock like me, I’m not a sports type person, it helps me maintain my motivation. Knowing that there’s people here that they don’t mind that I have Parkinson, they don’t mind that sometimes I have trouble, and sometimes I am slower or in the way or whatever it is other situations people don’t tolerate too much in public.
The classes were perceived as more than an opportunity to exercise among people like themselves; it was a weekly “get together” where people knew one another and socialized during and outside the class, and this brought happiness and joy to their lives. Some participants traveled to the class together, and many exchanged contact information. An additional benefit was support and insider information about their disease and treatment, similar to what a support group would provide, except here, the support group was wrapped up in the exercise group, and this was very appealing to many participants.
P14: You know it’s kind of a group, and we kind of know each other, and we keep up with each other and we exchange information. All around, it’s also social, it’s also activities of course, and I think the support is always nice for anybody.
Some participants had enrolled in other exercise programs but had not experienced the same motivation to continue. Despite their best intentions, some participants spoke about the importance and their desire to continue exercising when the program was on break but had either not enrolled or dropped out.
P1: Well I think in August when we don’t have this class I always say to myself I’m going to go to the (other gym) and do some classes there and I going to do some exercise, and I don’t do it.
P15: I didn’t continue with any of them (other exercise programs) because this is what I needed. I was always told exercise was good and important, but I didn’t like it. I was in athletics in high school, but I found exercise boring and this I didn’t, people, music, and the commonality of having Parkinson’s.
A further aspect of socialization was the opportunity to interact with the people from a different generation, that is, the students who changed each semester as they completed their experiential learning. This meant new and fresh faces and young people who had their own lives and stories, and this changed each semester for the participants.
P16: I like them (students) personally. I like getting the opportunity to talk to young people that I don’t get very often. I don’t have people around me I don’t live with people so I like it, I like getting involved with their (students) questions and just hearing their conversations among themselves too.
Professionals, Not Amateurs
Some participants spoke about other programs or gyms, especially those not designed for people with PD, that they had attended but not continued, so it was important to explore what about this program encouraged them to continue. Many participants spoke about how the professionalism and specificity of this program motivated them. Belief in the benefit of exercise for PD had been reinforced by their neurologists, and they appreciated that the exercises were specific and designed to benefit them as opposed to a random program that they enjoyed but might not have benefited them, and they were willing to put in the work at this program. Consistency of how the program was run and availability of support were factors that increased the participants’ trust in the program and kept them coming back.
P5: One of the things that draws me to come here is that it’s a professional well-thought out program and I trust it.
P16: I think it’s positive it’s friendly, it’s constructive like there’s structure to it there’s certain goals and things it’s not just fun for fun, there’s work involved too, but people have a professional attitude.
Many participants described how the program targeted their specific deficit and helped them improve. They appreciated that the instructor noticed what problem they were having and took the time to teach them specific exercises. In addition, there was congruence between what the instructor was doing and what their neurologist had told them, and this increased their trust.
P1: Well as I said before she’s (instructor) really helped me she’s spent time separately with just me, giving me suggestions. She’s so good about thinking what problems I have and thinking of exercises for me.
Although the role of the students was experienced differently from participant to participant, there were no apparent contradictions or disagreements about the role of the students. Furthermore, some participants liked some aspects of the students’ role, such as the assistance and motivation on the machines and help with documentation, but found inconsistency within the group of students. Because the students changed each semester, participants noted that some groups were better than others; the participants appeared to roll with that and saw it as an opportunity to educate the students about PD and how to deal with people with PD, and this empowered them.
P12: It gives us an opportunity to train these young people with how to deal with people like us. Maybe unwind some of their preconceptions, or whatever. You know, kind of give them a view of us that’s more holistic.
P3: I’ve been doing 20. So the student says oh next time you’re going to do 25, right? I say yeah, thank you for motivating me, I was going to give up at twenty.
Holistic Lasting Benefit
A huge motivating factor for many participants beyond the support and professionalism of the program was the effectiveness of exercising once to twice a week on their overall well-being and quality of life. The program had a very positive effect on them, so they wanted to achieve that feeling again and again.
P4: I feel that you know some days you’re just feel like blah, you know depression plays a major role in Parkinson’s as well as everything else you know and I’m not quite sure sometimes if I’m depressed or not but I do notice that on days when I come down here to the class, the day is completely different from any day when I’m just at home doing nothing.
P2: I feel that it helps me physically and mentally, I also feel better about myself at the end of the week when I’ve attended.
The beneficial feeling was a lure to continue exercises they had learned in the class at home, thereby continuing the effect of the exercises on their well-being.
P13: Every day I do my exercise, I do something that I learn from the class, what (instructor) teaches, I stretch, I do pushups, I do everything.
Many participants noted the negative effect if they missed a class, and this was a positive motivator. One participant described how they adjusted their routine on the days of classes to ensure they arrived on time and did not miss any part of the session.
P11: When you miss a couple classes for whatever reason, you really feel it, and then we lose because when we do the weights you know you work up a little bit, you work up the weights five pounds every other week or whatever you’re working on, and then you lose it and then you go back so you have to go 15 pounds back and then move up again.
The aim of this study was to explore why the participants continued to attend the group exercise program, the majority of them for 2 years or more (Table 2). The themes that emerged—“changing and challenging workout,” “gaining strength, inspiration, and knowledge and doing it among friends,” “professionals, not amateurs,” and “holistic lasting benefit”–suggest the importance of developing a program that is specific to people with PD, enjoyable but organized, and varied but structured and supervised.
The importance of a supervised program to people with PD was also a theme in another study (Shea & Blake, 2017), and as in this study, participants placed a strong value on confidence and trust in the program, something they were less sure of if they attended a public gym. This issue of trust, safety, and security may be more important for people with PD because of disease-associated symptoms such as freezing and fear of falling. Not surprisingly, fear of falling has been identified as a barrier to exercise in people with PD (Ellis et al., 2013), so providing a supervised environment, including supervision of students working with the participants, may contribute to long-term attendance.
The contribution of the instructor, including the way she tailored exercises to individuals, was appreciated by some participants, and many believed that the diversity and rigor of the program was due to the instructor. Additionally, participants also attributed the supportive environment to reassurance from peers, students and faculty. This finding contrasts with a previous study where reassurance was associated solely with the instructor (Crizzle & Newhouse, 2012), perhaps because in that study there were only four participants, and the instructor may have been able to spend more time with each person (Crizzle & Newhouse, 2012).
Support, however, was important, whether it came from professionals like the instructor, the supervising faculty, the students, or other participants. This support took many forms, including psychological; for example, one participant spoke about being inspired when seeing another participant doing difficult exercises; another spoke about a student motivating them to go beyond their usual number of repetitions. In an 8-week study conducted by Shea and Blake (2017), participants believed their program could have been improved with the addition of psychological support to help them cope with the challenges of PD (Shea & Blake, 2017). Support from different sources was mentioned by several participants in this study and may have helped them overcome personality characteristics, like embarrassment and frustration, found to be barriers to engaging in physical activity for people with PD (Pretzer-Aboff, Galik, & Resnick, 2009). One participant spoke about the feeling of freedom and safety the environment provided that encouraged her to try new things that she had previously thought she could not do. Although psychological support is not formally offered in the program, the stability of peers, and the caring approach of the instructor and faculty supervisors including nursing may have compensated and contributed to maintaining attendance. The role of psychological support is particularly relevant for nurses who are educated not only about evidence-based practice, but also about the importance of providing holistic care. Support in the form of social contact and interaction with others were found to be strong motivators for people with PD to attend a dance program for up to 5 years, with median attendance of 2 years (Bognar et al., 2017). Dance programs have consistently demonstrated higher attendance and lower attrition than exercise programs (Bognar et al., 2017), and this may be due to the nature of the activity, which participants may see as more fun with the opportunity to socialize and connect with other people.
Other themes related to exercise adherence in people with PD have been enjoyment of the activity and the peer group environment (Crizzle & Newhouse, 2012; Shea & Blake, 2017), and these factors were seen in this study with several participants stating peer group environment as both a motivating factor and providing a sense of comfort. In addition to enjoyment, participants expressed the feeling of being physically and psychologically stronger not only on the day of the exercise class but for several days after. Themes related to mind, body, and emotional benefits also emerged from participants of a dance program (Bognar et al., 2017), suggesting the contribution of the exercise environment that includes music and social interaction rather than the routine alone as the solitary benefit.
It is important to note that the participants did not want easy routines but wanted a challenge; it could be postulated that the participants had high expectations for the exercise session, and this motivated them to continue attending. Although it may be tempting to lower the expected outcome of an exercise program for people with degenerative conditions such as PD, a low outcome expectation of exercise has been shown to be a barrier to attendance (Ellis et al., 2013). In other words, people with PD, when given the opportunity, want to engage in challenging exercises that give them a sense of achievement and belief in their capabilities despite their physical disability. The issue of disability as a negative influence on exercise adherence has been found to be less of a deterrent than poor self-efficacy, as self-efficacy is strongly associated with adherence to regular exercise in people with PD (Ellis et al., 2011). In this program, encouragement from several sources such as the instructor offering guidance to individual participants or students assisting participants using the machines may have enhanced the participants’ belief in themselves to achieve, and this aspect was noted by several participants.
Several limitations may have influenced the findings of the study. Although the sample was small, it was adequate for a qualitative study (Polit & Beck, 2018). In addition, although minimal attendance of 50% was part of the inclusion criteria, minimal enrollment time in the program was not. Two participants who met inclusion criteria for 50% attendance had been enrolled in the program for only one year. However, 13 participants had attended for between 2 and 8.25 years (Table 2). Despite this, the themes identified were strongly articulated across the study group.
It may be considered both a strength and a limitation that the interviews were conducted by a faculty member who knew the participants. Familiarity with the participants may have led them to speak more openly and reveal more or be reluctant to criticize the program. The fact that several participants expressed negative views about the students may indicate that they were not concerned about repercussions of their comments. Because the program is free to all participants, there was nothing to gain from expressing overly positive comments or nothing to lose from criticism. The issue of the program cost was not explored in this study and was not discussed by the participants but may have increased attendance, and this could be considered a limitation and should be explored further.
Although this was a qualitative study with a small sample size and the findings were not intended to be generalizable to all people with PD, the themes that emerged suggest that ongoing adherence to exercise programs may be consistently achieved. Key elements include that the program provides varied and challenging exercises specific for people with PD, and a safe, enjoyable and socially supportive atmosphere. Furthermore, when developing exercise programs for this population, rehabilitation nurses should recognize the importance of program structure and education of personnel working with the participants. Rehabilitation nurses can support and encourage people who experience disease symptoms, such as freezing, during their exercise routines by being flexible, psychologically supportive, and modifying exercise routines. Long-term adherence may be enhanced through inclusion of an experienced instructor and stable organization of the program either by physical therapists, nurses, or a combination of both.
Key Practice Points
- Maintaining adherence to exercise is more difficult for people with Parkinson’s disease (PD) who are facing progression of symptoms and effects of aging while continuing to engage in activity
- People with PD may need more than a space with equipment to maintain adherence to regular exercise in the long term.
- When referring people with PD to exercise programs, preference should be given to programs that are structured and supervised and, if possible, specifically for people with PD.
- Encouraging a fun but challenging exercise experience with time allowed for socialization may improve adherence to exercise in people with PD.
The author thanks Amerigo Rossi and Rebecca States for assistance with data collection and review of transcripts.
Conflict of Interest
The author declares no conflict of interest.
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