Merging Yoga and Occupational Therapy for Parkinson’s Disease improves fatigue management and activity and participation measures

Abstract

Introduction

The purpose of this study was to explore the influence of a falls-risk management intervention, Merging Yoga and Occupational Therapy for Parkinson’s Disease, on fatigue and activity and participation measures, as well as examine the relationship between these constructs.

Methods

This mixed methods study included 17 participants with Parkinson’s disease. Participants took the Modified Fatigue Impact Scale and the International Classification of Functioning, Disability, and Health Measure of Participation and Activities Screener at three 8-week intervals: baseline (followed by an 8-week control period), pre-intervention, and post-intervention. Focus groups were completed at the conclusion of the study to explore participants’ perception of Merging Yoga and Occupational Therapy for Parkinson’s Disease related to their fatigue and activity and participation.

Results

Fatigue and activity and participation measures were significantly correlated (r = 0.76). Activity and participation measures (Measure of Participation and Activities Screener) significantly improved after the intervention (p = 0.012). Four themes related to fatigue and/or activity and participation emerged following qualitative analysis, including: managing fatigue: paying attention and acting accordingly; creating mindfulness in daily activities; giving and receiving within a community; and strengthening relationship to self and others.

Conclusion

Participants experienced improvement in activity and participation measures and perceived fatigue management after engagement in the community-based Merging Yoga and Occupational Therapy for Parkinson’s Disease program.

Keywords

Yoga allied health occupations Parkinson’s disease falls-risk management intervention human activities subjective fatigue occupational therapy

Introduction

Parkinson’s disease (PD) is a chronic, neurodegenerative condition, resulting in significant motor and non-motor impairments. Fatigue is a non-motor impairment often described as one of the most upsetting symptoms related to PD (Nassif and Pereira, 2018). Furthermore, fatigue in PD is a documented falls-risk factor (Rochester et al., 2006). Both the experience of fatigue and falling have been shown to reduce activity and participation for people with PD (Bryant et al., 2015; O’Brien et al., 2016). However, few interventions exist to address these impairments. Therefore, the purpose of this study was to explore the influence of a falls-risk management intervention, Merging Yoga and Occupational Therapy for Parkinson’s Disease (MY-OT-PD), on fatigue and activity and participation levels, as well as the relationship between these constructs.

Literature review

Defining fatigue in PD has proven difficult in research as fatigue is multidimensional and can be related to a number of compounding factors, including emotional and social disorders (Nassif and Pereira, 2018). There are multiple categories of fatigue, for example objective/subjective and physiological/pathological; this study focused on subjective fatigue (Kostić et al., 2016). Bryant et al. (2012: 326) defined subjective fatigue as an “overwhelming sense of tiredness, lack of energy and often a feeling of total exhaustion.” Because there are no biological markers for measuring subjective fatigue, it is often measured through self-report assessments (Siciliano et al., 2017). The percentage of people with PD reporting fatigue varies greatly – between 33% and 81%; this broad range may be due to inconsistencies in definition and measurement tools (Kostić et al., 2016). Throughout the remainder of this article, any mention of fatigue refers to subjective fatigue.

Fatigue, falls, and activity and participation are connected in PD. For example, fatigue is a documented falls-risk factor. Bryant et al. (2012) found fatigue in PD to be present more significantly in fallers when compared to non-fallers. Furthermore, people with PD are more likely to experience falls than age-matched peers, which is due to both the motor and non-motor symptoms of the disease, including fatigue (Kader et al., 2016). In a recent study 70% of people with PD experienced a fall within 1 year (Van Puymbroeck et al., 2018). Experiencing a fall can lead to injury, fear of falling, activity limitations or inactivity, and reduced participation (Wood et al., 2002). Specifically, Kader et al. (2016) found 41% of people with PD who had fallen described reduced activity and participation post-fall.

Activity and participation, defined by the International Classification of Functioning, Disability, and Health (ICF), is composed of nine domains: learning and applying knowledge; general tasks and demands; communication; mobility; self-care; domestic life; interpersonal interactions and relationships; major life areas; and community, social, and civic life (World Health Organization, 2002). The relationship between activity and participation and fatigue in PD is not fully understood as both constructs are complex and dynamic. However, several studies have shown negative correlations between fatigue and physical activity (Garber and Friedman, 2003; Müller et al., 2013). McAuliffe et al. (2017) studied communicative participation in PD, defined as “taking part in life situations where knowledge, information, ideas or feelings are exchanged” (407), and found a negative association between fatigue and communicative participation. Because activity and participation cover a broad scope of domains, more research is needed to better understand the relationship to fatigue in PD.

Treatment in PD consists of pharmacological and non-pharmacological options. Many pharmacological treatment options come with negative side effects and poorly manage non-motor symptoms (Davie, 2008). Yoga, as a non-pharmacological intervention for PD, is beneficial for both the motor and non-motor symptoms of the disease (Hawkins et al., 2018; Walter et al., 2019). According to Sharma et al. (2015), people with PD who participated in yoga reported: increased energy and relaxation; reduced fatigue; improved mood; positive social relationships; visible reduction in tremor; and attending to body signals more efficiently. Occupational therapy is a non-pharmacological treatment option that is beneficial for people with PD as it supports and promotes a person’s ability to engage in desired roles (Dixon et al., 2007; Sturkenboom et al., 2013).

Limited research exists on the relationship between fatigue and activity and participation levels in PD. More evidence is needed for effective interventions to manage the non-motor symptoms of PD, specifically fatigue. To our knowledge, this is the first study to merge two non-pharmacological treatments, yoga and occupational therapy, as a falls-risk management intervention for people with PD. Specifically, this study examined the relationship between fatigue and activity and participation measures and how each changed with MY-OT-PD.

Methods

Study design

This was a mixed methods study incorporating a convergent parallel design to analyze quantitative and qualitative data. This was a secondary analysis of data derived from a small single-armed pilot study (Swink et al., 2019). This study explored aspects of MY-OT-PD related to measures of fatigue and activity and participation. Outcomes were measured at three separate 8-week intervals: baseline (followed by an 8-week control period), pre-intervention, and post-intervention. Focus groups were completed at the conclusion of the study to qualitatively explore participants’ perceptions of the intervention related to their fatigue and activity and participation levels.

Recruitment and participants

After institutional review board approval, participants were recruited via convenience sampling from people attending a community-based “yoga for PD” class, people attending a PD support group, or flyers in the community. Originally there were 18 participants; however, one participant dropped out during the control period due to time commitment discrepancies. Inclusion criteria constituted: a self-reported diagnosis of PD; being 18 years of age or older; scoring ≥4/6 on the Short Mini Mental Status Examination (Dahlke et al., 2014); having the ability to stand with or without an assistive device; having the ability to communicate in English; and having transportation to the local athletic center to participate in assessments and MY-OT-PD. All participants provided written informed consent.

Intervention

Participants engaged in MY-OT-PD twice a week for 8 weeks (14 sessions, 1 week off for holiday break). The program consisted of 75 minutes of yoga and 60 minutes of group occupational therapy. On average, 12.82 ± 1.31 sessions were attended. Classes were missed due to family obligations and medical appointments.

The yoga sessions were led by a certified yoga teacher with over 4 years of experience leading weekly adaptive yoga classes designed for people with PD. Yoga consisted of physical postures (asana) in seated, standing, and floor positions. Breathing (pranayama) was incorporated into each session by pairing breath with the physical postures (inhaling and exhaling with movement). Mindfulness (dhyana) was incorporated as the instructor began each session with a meditation and guided participants’ thoughts throughout the session. Additionally, each session included techniques specific to PD symptoms (for example use of weighted sandbags, exaggerated vocalization and facial movements, etc.).

The group occupational therapy sessions were led by a registered and licensed occupational therapist with 5 years of clinical experience. Sessions took place in person and involved significant participant interaction, including discussions, activities (such as teaming up to complete worksheets), and action planning/homework (for example photographing an area in the home with potential falls-risks to share in upcoming sessions). Group occupational therapy included topics such as managing symptoms of PD (including over three sessions dedicated to fatigue management), managing the environment, and changing attitudes and behaviors (Table 1). Merging Yoga and Occupational Therapy (MY-OT) was originally developed for clients with stroke but refined to meet the needs of people with PD for this intervention (Schmid et al., 2016; Swink et al., 2019).

Table 1.

Weekly group occupational therapy topics.

Week	Session	Group occupational therapy topics
1	1	Program overview; introduction to falls
	2	Intro to WHO model; fear of falling
2	3	Fall analysis; personal action plans
	4	Effects of PD and their role in falls
3	5	Medications, alcohol, and falls risk; mobility aids
	6	Physical activity and falls
4	7	Physical activity, endurance, and fatigue part 1
	8	Physical activity, endurance, and fatigue part 2
5	9	Activity modification for fatigue management
	10	Physical activity for better strength
6	11	Falls hazards in the home and community
	12	Falls management and advocacy
7		Holiday break week
8	13	Falls management and case studies
	14	Program review

WHO: World Health Organization; PD: Parkinson’s disease.

Data collection

Quantitative data

All data were collected by the study’s principal investigator or a trained research assistant. Assessments included the Modified Fatigue Impact Scale (MFIS) and the ICF Measure of Participation and Activities Screener (IMPACT-S) (Post et al., 2008; Schiehser et al., 2013). Participants took the assessments electronically or on paper at baseline, pre-intervention, and post-intervention.

The MFIS is a self-report questionnaire that measures fatigue through 21 items ranked on a scale from 0 (“never”) to 4 (“almost always”). The MFIS assesses multiple facets of fatigue, including physical, cognitive, and psychosocial functioning (Schiehser et al., 2013). Total scores are calculated by adding responses and can range from 0 to 84, with higher scores indicating greater fatigue. The MFIS has been validated for use with people with PD without dementia (Kluger et al., 2017).

The IMPACT-S is a self-report questionnaire that measures activity and participation based on all nine activity and participation domains as defined by the ICF (Van der Zee et al., 2010). IMPACT-S consists of 32 questions which are rated on a scale from 1 (“no limitations whatsoever”) to 4 (“I cannot do that at all”). Total scores are calculated by adding responses, with higher scores indicating greater impairment. Psychometric properties of IMPACT-S have been tested and validated with road accident victims (Post et al., 2008). While IMPACT-S has not yet been used for PD, it has been used to measure activity and participation in other populations with neurological conditions, such as stroke (Miller et al., 2013).

Qualitative data

Two semi-structured focus groups (n = 11, n = 5) were conducted at the end of the intervention by a trained Ph.D. candidate unaffiliated with the study. One participant was unable to attend the focus groups due to illness. Questions qualitatively examined participants’ perceptions of how their fatigue and activity and participation levels were influenced by the intervention. Two of the questions most relevant to this research were: (a) “what did you learn to manage fatigue” with a probe “what did you learn in yoga vs occupational therapy class,” and (b) “how has your management of fatigue influenced what you need and want to do?”

Data analyses

Quantitative data

Quantitative data were analyzed using SPSS 25 software (SPSS Inc, Chicago, IL). Data were transformed, replacing missing values using the series mean. Demographic data were described with means, standard deviations, frequencies, and percentages. Analyses revealed no significant differences between baseline and pre-intervention outcome measure data. Therefore, baseline and pre-intervention data were averaged and the new mean and standard deviation were used as pre-intervention scores. Fatigue and activity and participation measures were correlated. Outcome measure data were analyzed for normality using a Schapiro–Wilk test and all data were normal. Paired t-tests were used to compare pre- and post-intervention scores.

Qualitative data

The focus groups were recorded and transcribed verbatim into word processing files. The transcripts were analyzed using NVivo 12 software (QSR International, Melbourne, Australia). Transcripts were coded using two methods independent of each other: inductive and deductive coding (Table 2). First, transcripts were inductively coded, allowing codes to emerge from the data to capture the participants’ experience. Then, transcripts were deductively coded using all nine ICF activity and participation domains. Once both inductive and deductive codes were generated, codes were organized together to create major themes and subthemes. To ensure rigor, a separate analyst triangulated the data during the entire process. Furthermore, an audit trail was kept and triangulation was used by comparing the focus group facilitator notes to transcripts. Codes were peer-reviewed by a committee member who wasn’t involved with the study participants.

Table 2.

Qualitative analysis.

Data examples	Inductive codes	Deductive codes (9 ICF activity and participation domains)	Major themes: subthemes
“Giving myself permission to rest”	Learning to accept fatigue		Managing fatigue: “paying attention and acting accordingly”:Fatigue awarenessFatigue acceptanceUsing rest and exercise
“Exercise helps my fatigue in the afternoon”	Exercise for fatigue
“I learned to keep reviewing the conditions in my house to make sure they’re safe”	Household safety	Learning and applying knowledge	Creating mindfulness in daily activities: Environmental awarenessBody awarenessDoing more or less
“Mindful[ness] with movement are two things it [MY-OT-PD] really helped me with”	Mindfulness in body	Mobility
“Everybody in here is in the same boat”	Shared experience/comradery	Community, social, and civic life	Giving and receiving within a community: ComraderyGiving backMotivation
“We’re not just taking we’re giving too”	Transactional relationships/contributing	Major life areas
“It takes a little while before the words will come up, and I don’t feel bad about it anymore it’s like, this is normal”	Self-compassion/cutting yourself some slack	Communication	Strengthening relationship to self and others: Self-compassionAdvocating
“I’ve been really calling my spouse out on it lately and, telling him you have to know how much more sensitive I am”	Educating partners	Interpersonal interactions and relationships

ICF: International Classification of Functioning, Disability, and Health; MY-OT-PD: Merging Yoga and Occupational Therapy for Parkinson’s Disease.

Results

Quantitative data

Of the 17 participants who completed the study, 10 were male. The average participant age was 72 years (range 64 to 82 years). The average time since diagnosis was 7 years (range <1 to 18 years) (Table 3).

Table 3.

Demographics.

Characteristics	Total (n = 17)
Age (years), M ± SD	71.94 ± 4.49
Time since Parkinson’s disease diagnosis (years), M ± SD	6.93 ± 5.45
Sex (male)	10 (58.8%)
Race (Caucasian)	17 (100%)
Education (“some college” and above)	15 (88.2%)
Married or partnered (“yes”)	13 (76.5%)
Lives with others (“yes”)	15 (88.2%)

Correlations of the MFIS and IMPACT-S scores were significant at both time points, indicating fatigue and activity and participation were correlated. The correlations at pre-intervention (r = 0.760, p<0.001) and post-intervention (r = 0.744, p = 0.001) data collection were strong. There was a significant improvement between pre- and post-intervention scores on the IMPACT-S (60.32 ± 13.02 vs. 55.57 ± 14.18, p = 0.012), and a percent change decline of 8%. There were no significant changes in MFIS scores (Table 4).

Table 4.

Quantitative results: means, standard deviations, paired t-tests.

Outcome measures	Pre-intervention	Post-intervention	Significance^a (p-value)
MFIS (n = 17)	38.93 ± 17.16	39.94 ± 13.60	0.646
IMPACT-S (n = 17)	60.32 ± 13.02	55.57 ± 14.18	0.012

^asignificant at p ≤ 0.05.

MFIS: Modified Fatigue Impact Scale; IMPACT-S: International Classification of Functioning, Disability, and Health Measure of Participation and Activities Screener.

Qualitative data

Theme 1: managing fatigue: “paying attention and acting accordingly”.

Fatigue awareness

Participants commonly described an increased awareness of fatigue and its effect on their daily activities after MY-OT-PD. For example, some participants discussed enhanced insights about fatigue management beginning with awareness or “paying attention to it” (Participant-15). Participants described learning to distinguish types of fatigue. For example, Participant-9 talked about how he learned his mental and physical fatigue are related when he said:

I’ve found out fatigue comes from sitting more than what I do. And if I’m just looking through boring stuff when a commercial comes up, I get up and walk around. But if I hit something that’s really interesting and I concentrate on it then when it’s over and I go to get up I’m tired, and my balance is off, and I want my cane.

Fatigue acceptance

Another component participants shared as part of learned fatigue management was accepting fatigue rather than fighting it, illustrated when Participant-11 said, “accept it [fatigue] … that’s the way it is … it’s ok.” Participants expressed learning to give oneself permission to rest or respond how one’s body needed. Participants felt that MY-OT-PD helped normalize the experience of fatigue. For example, Participant-7 said, “… some days you’re just not up to par and that makes us normal.”

Using rest and exercise

Participants shared that as their fatigue awareness increased, so did their ability to detect whether they needed rest or exercise to manage fatigue. For example, Participant-3 learned his stress and fatigue levels were connected and he needed exercise to work through those, illustrated when he said, “Yeah, fatigue has got a lot to do with stress, and obviously yoga is a way to attack that.” In contrast, Participant-5 learned rest helped his fatigue, illustrated when he said, “Learning to relax … it’s a good way to [let go of] a lot of tension, you think it would prevent some fatigue.”

Participants commented on both the occupational therapy and yoga components of the intervention being helpful in managing fatigue as the occupational therapy component allowed discussion around awareness and strategies for fatigue management, while the yoga sessions provided an opportunity to address fatigue through either rest or exercise. Participant-7 expressed how yoga was both an opportunity to exercise and rest when she said:

When you’re doing things like making an appointment and it’s not working, then you get anxious … but that just tears down your body and I find that’s what’s fatiguing, is this not being able to control what you’re doing. And then I had trouble going to rest because of that. I think yoga helps you in seeing you can have a workout, get your body moving, and then still have that time to get some rest. And it just makes your day go better … I think at different times, certain fatigue things need to be worked out through a workout, so you rest better.

Theme 2: creating mindfulness in daily activities

As participants discussed how MY-OT-PD helped them in their daily activities, a major theme of mindfulness emerged. Many participants remarked on how they learned to “slow down, stop and think about it” (Participant-15) before undergoing a task.

Environmental awareness

Participants commonly attributed an increase in environmental awareness to the occupational therapy classes. Many participants shared perceptions of increased attention to “safety in the house” (Participant-4) and the physical environment during daily activities. Some participants shared that this increased awareness of their environment gave them more confidence to engage in daily activities. Additionally, participants noted that through MY-OT-PD their perception of the environment was becoming more mindful. For example, Participant-9 said, “Anytime you’re going someplace in the dark or someplace you’ve never been you’ve gotta … plan it like a backpacking trip, which way you’re gonna go, where you’re getting stuff.” Participant-11 shared a similar sentiment when she said, “It’s [occupational therapy classes] brought a lot of things into focus for me.”

Body awareness

Participants commonly discussed how the yoga classes helped them increase their body awareness (being more mindful of their body). For example, Participant-3 said, “I was intrigued by why we had yoga. Why yoga for PD? … it’s just becoming aware of your body in particular ways.” Participant-17 remarked, “… to me yoga is a piece of it … it’s the part that really helps my muscles stretch out and get rid of some of the tightness.” In paying closer attention to their body, participants became more conscious of their own capabilities and limitations. For example, Participant-11 discussed how she learned to adapt yoga to her individual needs when she said:

You can make this one [yoga class] a workout too if you choose. You can make it … you can do what you want with it, that’s what I like about the adaptive yoga. And we don’t judge each other you know …just doing what you can is a super helpful thing.

Doing more or less

Participants described being mindful in changing their activities to do more or less, depending on their fatigue levels. Some participants noted, through MY-OT-PD, that they learned to do less or take things out of their daily routine to accommodate fatigue. Examples of doing less included not making the bed, not multitasking, and giving up being an election judge. On the contrary, some participants discussed how managing their fatigue enabled them to do more activities throughout the day. For example, Participant-4 said:

I … can walk without this stick now. I use it just for safety uh, purposes … I’m doing a lot of things that I used to try to do but I couldn’t do … I vacuum our house. That was a hard thing to go ahead and do. I’m doing it. I’m cooking more. I … it [MY-OT-PD] just changed my whole life.

Theme 3: giving and receiving within a community.

Comradery

One of the most commonly reoccurring ideas shared by participants was the sense of community and comradery MY-OT-PD provided. Participants expressed sentiments that the intervention provided a safe place and space to “live with it [PD], deal with it, talk with someone who might have the same thing” (Participant-14). Participants felt the group dynamics were encouraging of one another, for example, Participant-11 said, “It’s the act of hearing each other’s stories … call it synergy, we feed on each other’s energy.”

Many participants viewed the group comradery as one of the most important things gained from the intervention. For example, Participant-18 said, “I think what I liked the best was the group and seeing myself in everybody else and having that reflected back to me, and seeing the kindness and the humanity of the group and what they’re going through.” Participant-3 said:

I’ve had a problem all my life of shooting my mouth off. And one thing I’ve appreciated in this group is that uh, you didn’t seem to mind too much [laughter] … it’s one of the things that I’ve been most appreciative of … There’s a lot of societal support and it couldn’t be a better illustration of that than this very class. It’s really something very wonderful … that we’re human beings and we care about each other.

Giving back

Participants valued the opportunity MY-OT-PD provided to contribute and give back to the community. This is represented when Participant-3 stated:

One of the things that I think is really great about this is that, you know we’re used to being needy. With PD you have a lot of needs, but uh, I like the idea that this is a research project to do your Ph.D. and that’s gonna really contribute something and we can contribute to that educational process. We’re not just taking we’re giving too.

Others expressed gratitude for creating transactional relationships with student volunteers during the intervention. Participant-11 stated, “I think we wanna help them as much as they wanna help us too. We like having students – we love having students … anytime the students are there we are better. And I think we make the students better.”

Motivation

Participants perceived MY-OT-PD as a source of motivation to make a positive change in daily routines, increase household safety, or participate in a social setting. Participant-11 described her attendance in MY-OT-PD to be motivated by social participation when she said, “ … the socialization is really important to me, just to be with a group of people.”

Participant-3 described being motivated by MY-OT-PD to increase household safety when he said:

You know, everybody gets a big laugh out of my porch and uh, the problem for me was getting around to it … I have good intentions but getting around to it … I think the idea that we have so many things in this notebook that we’re trying to do, it really helped me to get the rubber hitting the road, you know, you’ve gotta really do it instead of just thinking about doing it.

Theme 4: strengthening relationship to self and others.

Self-compassion

Participants remarked that throughout MY-OT-PD they learned to foster more self-compassion. Many participants expressed learning to be gentle with themselves, as Participant-3 expressed: “There’s a theme here: patience with ourselves. Being willing to cut ourselves some slack and not be disappointed with ourselves.” Participants also expressed an acceptance of limitations in a compassionate way, illustrated when Participant-15 said, “I say not in this lifetime, don’t worry about it.” Of fatigue management, Participant-11 said, “Giving myself permission to rest is not something I’m good at but I’m getting better.” Participants found comfort in sharing their PD symptomology with others, demonstrated when Participant-4 remarked, “I’m in such peace now. You know, finding out that this is just part of Parkinson’s … it doesn’t bother me now …”

Advocating

Another way in which participants perceived MY-OT-PD to be helpful was through learning to advocate for their needs with others, specifically their partners. Many participants said they “wish[ed] the caretakers would sit in on some of these classes” (Participant-9) in order for the caretakers to see things from their perspective. Many participants felt empowered to communicate their feelings to partners and caretakers. For example, Participant-4 said of her partner: “Once in a while … he’ll speak and it’ll be in an angry voice and I learned to say, ‘hey wait a minute I did not like the way that sounded, that hurts my feelings, you know, can you rephrase that.’”

Discussion

The aim of this study was to explore the influence of MY-OT-PD on fatigue and activity and participation measures, as well as the relationship between these constructs. Similar to previous studies, a correlation between fatigue and activity and participation scores in PD was found (Abrantes et al., 2012). This is unsurprising as fatigue in PD has previously been connected to sleep disturbances, poor quality of life, and depression; it seems intuitive that experiencing those symptoms would impair one’s activity and participation levels (Müller et al., 2013). Unlike other studies reporting on activity and participation in PD, this study used IMPACT-S as the assessment, which covers all nine ICF activity and participation domains. These results potentially link fatigue to multiple facets of activity and participation, rather than only physical activity and communicative participation, as have previously been correlated to fatigue in PD (Garber and Friedman, 2003; McAuliffe et al., 2017).

Quantitative changes in fatigue after MY-OT-PD were not significant, and MFIS scores actually increased slightly. The increase in scores could possibly be from the intervention increasing participants’ awareness of fatigue. Perhaps the participants’ increased MFIS scores are related to their increased activity and participation, which may have created more fatigue. As fatigue is a non-motor symptom of PD that worsens with disease severity, the MFIS results are not alarming (Zuo et al., 2016). Qualitative data revealed participants learned skills for fatigue management after MY-OT-PD, including increased acceptance, awareness, and use of rest or exercise. As fatigue is multifaceted, Nassif and Pereira (2018) stated, “fatigue management is symptomatic,” and suggested people with PD begin fatigue management with awareness, followed by education on both pharmacological and non-pharmacological treatment options (148). Because MY-OT-PD included both yoga and occupational therapy, there is potential that the intervention holistically addressed the challenges of managing fatigue, through the combined rest and exercise of yoga with the self-management of occupational therapy.

Quantitative data revealed a statistically significant improvement in IMPACT-S scores from pre-intervention to post-intervention, quantifying the improvement in activity and participation measures after MY-OT-PD. Furthermore, qualitative data revealed outcomes related to all nine domains of activity and participation included in the main themes: creating mindfulness in daily activities, giving and receiving within a community, and strengthening relationship to self and others. As activity and participation are a broad concept, it is encouraging to see improvements in multiple ICF domains. There are a few interpretations that potentially explain why this improvement in activity and participation measures is important. For example, exercise is one facet of activity and participation, belonging to the subdomain self-care. O’Brien et al. (2016) studied the meaning of exercise participation in PD and discovered it was a way for participants to reframe their identity. They suggested:

The presence of a chronic disease undermines the unity between body and self, and forces identity changes. People with chronic illness respond to challenges to their identity in one of two ways: adapting to it (reframing their identity) … or struggling against it (478).

MY-OT-PD incorporated a multimodal intervention approach, which may have encouraged participants to adapt to or reframe their identity. Several themes potentially related to adapting to a changing identity emerged from the MY-OT-PD participants, specifically the subthemes “self-compassion,” “fatigue acceptance,” and mindfully “doing more or less.” According to Yan Yan Kwok et al. (2017: 3), “a yoga intervention is hypothesized to help a person with PD to explore one’s self-boundaries, redefine their illness experience, and self-transcend to attain a sense of well-being even in the vulnerable PD trajectory.” Yoga is a way to unite the body and self, as the word yoga translates to “union” (Woodyard, 2011). Perhaps part of the meaning participants gained from participating in MY-OT-PD was a reframing of identity. However, further research is needed to test this hypothesis.

Limitations

A major limitation of this study was the lack of a control group. Furthermore, the sample was small and homogenous (100% of participants were Caucasian), limiting the generalizability to the broader population with PD. The sample was a highly educated group, potentially indicating the type of people who seek out this kind of research, and may already be educated on managing PD. The high education level of the group may also have increased their comprehension and utilization of information throughout MY-OT-PD.

In this study there was a large range in years since PD diagnosis (<1 to 18 years). Therefore, participants were likely at different stages in disease progression. Some people were just dealing with a new diagnosis, while some had been living with PD for years and may already have been employing effective strategies for managing the disease. This may explain why standard deviations of outcome measure data were so large. A potential limitation of this study is no Hoehn and Yahr disease rating scale was used (Hoehn and Yahr, 1967). Another potential limitation is the convenience sampling method, including people who were already attending a “yoga for PD” class held in the community before initiation of MY-OT-PD.

Other potential limitations include the focus group questions. While the team was diligent in crafting questions to be neutral, there is always concern that participants considered a question as leading toward a certain response. The first focus group included 11 people, which is relatively large for a focus group, potentially minimizing the opportunity for less-vocal participants to talk. Furthermore, the reported outcomes could have been influenced by the attention paid to participants, the social aspects of the intervention, and the fact that participants were part of a study.

Future research

Future research should include a larger sample with a control group and a follow-up study. It would be important to include a yoga-naïve group of participants. Furthermore, it would be beneficial to consistently coordinate timing of medications taken with when timing assessments are administered, as the timings of administered assessments in this study were based on convenience to participants. It would also be interesting to study the correlation of fatigue with more specific domains of activity and participation, to further the knowledge of how these two constructs are related.

Another area for future research could be a dyadic caregiver study related to MY-OT-PD. Hinsey et al. (2018) studied the experience of caregivers in a dyadic MY-OT stroke intervention and discovered, through attending MY-OT, caregivers improved in the following: self-reported caregiver burden; coping strategies; positive aspects of caregiving; positive change in perspective; and increased quality time with the care receiver. While caregivers of the MY-OT-PD participants were invited to attend MY-OT-PD, none of them did. This could be in part because no emphasis or excess encouragement was made to include caregivers.

Clinical implications

This study has several implications for occupational therapy. First, it shows a community program merging yoga and occupational therapy may be helpful in improving perceived fatigue management and activity and participation levels for people with PD, but further research is necessary to prove its efficacy. Additionally, this study supports a need for more community programs, including accessible yoga programming. Since people with PD may not be getting regular occupational therapy, a community program allows individual and group needs to be addressed in one setting.

This study also has implications for individual occupational therapy treatment. Occupational therapists could use aspects of MY-OT-PD (including discussions around fatigue, energy conservation, environmental factors that contribute to falls, etc.) to promote clients’ awareness and mindfulness during daily activities. Occupational therapists should educate clients on how to seek out available community resources. If limited community resources exist, occupational therapists are positioned to empower clients to advocate for more community programs to be created, as occupational therapists promote clients to “act in the world of reality as their own agents” (Hooper and Wood, 2002: 43). Occupational therapists interested in combining yoga with practice are encouraged to seek out more education on the topic, as the combination of yoga with occupational therapy practice reinforces the use of holistic treatment methods in occupational therapy (Bradshaw, 2017).

Conclusion

The results of this study indicate a strong correlation between fatigue and activity and participation impairment scores in PD. Participants’ IMPACT-S scores significantly improved after MY-OT-PD. Qualitative results indicate improvements in fatigue management and all nine ICF activity and participation domains. This research furthered the understanding of using two non-pharmacological treatment options to address fatigue and activity and participation in PD.

Key findings

Fatigue is strongly correlated with activity and participation in Parkinson’s Disease (PD)

Participants’ activity and participation scores significantly improved after Merging Yoga and Occupational Therapy for Parkinson’s Disease (MY-OT-PD)

Participants perceived that they learned fatigue management after MY-OT-PD

What the study has added

This study has provided preliminary evidence in favor of merging two non-pharmacological options, yoga and occupational therapy, for PD treatment to target fatigue management and improvement in activity and participation.

Footnotes

Acknowledgments

We wish to extend a warm thank you to Jennifer Atkins, who taught the yoga portion of MY-OT-PD. We also wish to express gratitude to the Raintree Athletic Club for providing the space for the intervention. To the participants of the intervention, we sincerely thank you, as this research would not have been possible without your engagement.

Research ethics

Ethical approval was obtained from the Colorado State University Institutional Review Board (17-7398H) in 2018. The registration number can be found at clinicaltrials.gov “Merging Yoga and Occupational Therapy for Parkinson Disease: Phase 2” (NCT03578653).

Consent

All participants provided written informed consent to be included and interviewed for the study, and for their anonymized data to be used for research purposes.

Declaration of conflicting interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and publication of this article. The authors hold favorable opinions of yoga and occupational therapy, but tried to mitigate any bias through triangulation, peer review, and periodic, intentional reflection on biases. The contents of this publication do not represent the views of the United States Department of Veterans Affairs.

Funding

The authors disclosed receipt of the following financial support for the research of this article: the Lee Silverman Voice Training Global Foundation grant for occupational therapy students (FY17 #137298).

Contributorship

Laura Swink, Heather Hill, and Arlene Schmid conceived the study. Laura Swink and Arlene Schmid created the study design and applied for ethical approval. All authors contributed to the methodology of the project and the statistical analysis plan. Heather Hill, Laura Swink, Abby Anderson, and Arlene Schmid carried out the statistical analysis, and all authors interpreted the data. Heather Hill wrote the first draft of the manuscript. All authors reviewed and edited the manuscript and approved the final version.

ORCID iDs

Heather M Hill

Karen E Atler

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