EQOL Journal (2022) 14(2): 21-30
SPECIAL COMMUNICATION
21
Moving beyond the physical: exploring the holistic benefits of a
therapy-based physical activity program for individuals with
Parkinson’s disease
Kimberly S. Fasczewski
1
Nolasco R. Stevens
1
Hannah S. Michels
1
Jennifer S. Howard
1
Received: 27
th
May, 2022 DOI: 10.31382/eqol.221203
Accepted: 5
th
September, 2022
© The Author(s) 2022. This article is published with open access.
Abstract
In individuals diagnosed with Parkinson’s Disease
(PD), a chronic neurodegenerative disorder
affecting movement and functionality, therapy-
based physical activity (PA) that includes repetitive,
quick motions benefits physical and cognitive
functioning and can positively impact the disease
course. Furthermore, the benefits of therapeutic PA
participation may extend beyond physiological
outcomes by positively influencing social and
psychological well-being, thus increasing the
overall quality of life (QoL). The current research
examined a regional healthcare system-supported
group therapeutic boxing/PA program for PD using
a biopsychosocial lens to synthesize the holistic
benefits of long-term program participation.
Researchers conducted semi-structured focus group
interviews with program participants (n = 18) and
their caregivers (n = 7) to explore the perceived
benefits of a combination boxing/PA program that
included 30 minutes of boxing and 30 minutes of an
alternate rotating PA 1-3 times per week. Results
indicated a positive impact on participants’ and
caregivers’ QoL by increasing socialization and
empowerment and improving/maintaining physical
function. These results demonstrate the importance
of using a biopsychosocial approach in program
design and
evaluation of PA-based PD interventions. In
addition to addressing PD-specific physical needs,
PA programs should be constructed to include
supportive social atmospheres and consider non-
physical needs and overall QoL outcomes of
patients and caregivers.
Keywords Quality of Life Physical Activity
Parkinson's Disease • Boxing • Self-efficacy
Introduction
Parkinson’s disease (PD) is a neurodegenerative
disease characterized by diminished motor
activity, tremors, rigidity, balance instability, and
cognitive deficits, resulting in reduced physical
functioning and decreased quality of life (QoL)
(Hoehn & Yahr, 1967). Due to the progressive
nature of PD, successful treatment is characterized
by the maintenance of the status quo or small
improvements, with the best-case-scenario being
the maintenance of current abilities for as long as
possible before inevitable decline (Rosenthal &
Dorsey, 2013; Santiago et al., 2015). There is a
growing body of literature suggesting a positive
impact on both physical functioning and overall
QoL when individuals with PD participate in
regular physical activity (PA) as a complement to
drug therapies (da Silva et al., 2016; Lucia et al.,
2014; Rosenthal & Dorsey, 2013; Schrag,
Jahanshahi, & Quinn, 2000). For many individuals
with PD, this means finding adaptive PA that
caters to the physical limitations specific to PD
(Lucia et al., 2014).
1
EQOL Journal (2022) 14(2): 21-30
22
PA programs which include repetitive quick
motions, such as dance and boxing, are effective for
therapeutic rehabilitation for individuals with PD
(Šumec, Filip, Sheardová, & Bareš, 2015). These
programs have demonstrated positive physical
outcomes, but have only undergone cursory
examinations related to psychosocial outcomes.
Additionally, the majority of interventions have been
based on a single PA modality. Therapeutic PA
programs that concurrently combine aerobic and
strength-based activities, and incorporate repetitive
quick motions have not been explored in-depth in a
qualitative manner to identify patient-perceived
physical and psychosocial benefits to QoL.
While the physical benefits of PA participation for
people living with PD are understood, exploration
continues into the most effective PA modalities to
maximize psychological benefits and maintain
participation (Nimwegen et al., 2011). Long-term PA
participation depends on the development of self-
efficacy and intrinsic motivation (Sweet, Fortier,
Strachan, & Blanchard, 2012; Teixeira, Carraça,
Markland, Silva, & Ryan, 2012). Self-efficacy can be
understood as situation-specific self-confidence and
is an essential component of maintaining behavior
(Bandura, 1997). In a PA context, self-efficacy
enables the individual to feel enjoyment and
satisfaction thus developing intrinsic (internalized)
motivation for the behavior (Sweet et al., 2012). For
individuals living with PD, maintaining high levels of
self-efficacy for PA is challenged by the inevitable
physical decline (Urell, Zetterberg, Hellström, &
Anens, 2019). Participants in PA programs that
incorporate self-efficacy protocols report decreases in
depression and increases in QoL (Wu, Lee, & Huang,
2017). Furthermore, when intrinsic motivation and
self-efficacy are facilitated in group settings with
social support, individuals exhibit higher levels of
self-efficacy, and report more satisfaction with the
activity, thus increasing long-term adherence
(Edmunds, Ntoumanis, & Duda, 2006; McAuley &
Blissmer, 2000).
Social support is essential to PA participation
(Rodrigues de Paula, Teixeira-Salmela, Coelho de
Morais Faria, Rocha de Brito, & Cardoso, 2006), and
individuals living with PD repeatedly report higher
QoL when they are part of PD-specific groups
(Hackney & Earhart, 2009; Rodrigues de Paula et al.,
2006). Additionally, social support for the individual
with PD and their caregiver has the potential to
increase program retention and compliance (Quinn et
al., 2010; Rodrigues de Paula et al., 2006).
Unfortunately, social, psychological, and QoL
benefits are rarely considered in PA program design,
evaluation, or outcome assessments. Given the
degenerative nature of PD, if programs are being
assessed only on functional improvement, benefits
may be interpreted as negligible or limited at best.
Instead, programs should be purposefully designed to
address psychosocial well-being to provide holistic
program benefits.
One model for PA programming that effectively
incorporates a holistic approach is the
biopsychosocial model of patient care. The
biopsychosocial model posits that in addition to
physical symptoms, social and behavioral constructs
influence an individual’s experience of their disease,
therefore programming should address physiological,
psychological, and social factors (Wade & Halligan,
2017). This model has begun to garner support in
treatment with chronic disease populations (Black &
Dorstyn, 2015). Programming based on a
biopsychosocial model addresses the biomedical
component of care but also considers how a person’s
beliefs, behaviors, knowledge, and social
environment affect the person (Wade & Halligan,
2017). Intuitively, some programs already do this. By
examining the lived experiences of participants in
these programs, we can better understand
programmatic factors that contribute to psychological
and social benefits beyond the frequently reported
physical benefits. For a disease such as PD, this is
crucial for the development of patient-centered
therapeutic care.
Numerous studies have examined the impact of
PA on the QoL for individuals living with PD (Chen
et al., 2020); however, to our knowledge, there is no
research examining the holistic impact of PA
programming through a biopsychosocial lens. The
current study focuses on a local healthcare system-
supported program that has been intuitively
incorporating biopsychosocial components of PA
programming into a PD-specific group boxing/PA
program. The program began three years before data
collection and consisted solely of boxing as the means
of PA, but was switched to include additional PA
modalities in conjunction with boxing 6 months
before data collection. Given the aforementioned
information, the current project aimed to use an
observational descriptive qualitative approach
(Sandelowski & Barroso, 2007) to examine this
existing PD-specific boxing/PA program through a
biopsychosocial lens to explore the reported
experiences of participants and caregivers. The goal
was to provide an in-depth understanding of the lived
experience of the program participants.
EQOL Journal (2022) 14(2): 21-30
23
Method
Participants
Participants were recruited from a regional healthcare
system-supported boxing/PA-based program for
individuals living with PD called Thrive - Parkinson’s
Exercise Program (Thrive-PD). All individuals who
participated in Thrive-PD were approached for
inclusion and eighteen participants (13 male, 5
female), aged 60-86 years, enrolled in the Thrive-PD
program at a regional health and wellness center,
agreed to participate in the study - representing all but
2 current program participants. The participants had
varying PD severity and symptoms, physical and
mental abilities, and years since diagnosis (Table 1).
All participants had a medical diagnosis of PD or
related neurodegenerative disorder, had been referred
to the program by a healthcare provider, and had been
actively participating in Thrive-PD for at least 3
months. Two participants did not have PD but had
other unspecified progressive neurological disorders
for which their physicians felt the Thrive-PD program
would be beneficial. When available, the participant’s
caregiver (n = 7) also took part to aid the interview
process and provide their perspectives. Three Thrive-
PD program administrators/staff were also
interviewed. Participant demographics and indicators
of disease severity/duration are presented in Table 1.
Table 1. Descriptive data
Variable
n
%
Gender
Males
13
72
Females
5
28
Age
60-69
4
22
70-79
10
56
80-89
4
22
Time since diagnosis
0-5 years
5
28
5-10 years
4
22
10-15 years
3
17
15-20 years
2
11
Unknown
3
17
Table 1. Descriptive data (continued)
Variable
Median
Range
Parkinson's Disease
Questionnaire - 39
Mobility
39
(20-88)
ADLs
40
(27-77)
Emotional Well-being
32
(20-80)
Stigma
25
(20-50)
Social Support
23
(20-60)
Cognition
50
(20-80)
Communication
47
(20-87)
Bodily discomfort
47
(27-80)
PDQ-39 Summary Ind.
42
(25-59)
n
%
Use of Assistive Device*
None
9
50
Cane
6
33
Walker
3
17
Wheelchair
2
11
Other Unspecified
devices
1
6
* Those using an assistive device could select more than
one device
Program Structure
The Thrive-PD program was held at a hospital-
managed regional healthcare rehabilitation facility
that specializes in treatment and therapy programs for
cardiovascular, neuromuscular, and cardiopulmonary
diseases. When initially developed by a physical
therapist specializing in neurological rehabilitation,
the Thrive-PD program structure involved a one-hour
boxing circuit, which included stations that
participants rotated through with exercises involving
the speed bag, standing punching bag, agility ladder
drills, and individual sparring with the program
instructors (see Table 2). Exercises were
individualized to each participant's level of function.
Classes were held three days per week with
participants attending 1-3 classes weekly. Class sizes
averaged between five and eight participants of
various ability levels with everyone participating
concurrently. Approximately two and a half years
after inception, the structure of Thrive-PD was
changed to accommodate growing program
enrollment, provide alternative forms of PA in
addition to boxing, and allow for more individualized
PA programming for participants of differing ability
levels and disease progression. The revised Thrive-
PD program included 30 minutes of a rotating
alternative PA (cycling, Tai Chi, yoga, ZumbaTM,
EQOL Journal (2022) 14(2): 21-30
24
and weight training) and 30 minutes of the previously
described boxing circuit workout. For each session,
participants were divided into 2 groups; one group
started with boxing, and the other with the alternative
PA. After 30 minutes, the groups switched. Each
group had a maximum of three individuals during the
boxing portion of the class to allow for more
specialized training and one-on-one work with the
staff. Caregivers were invited to take part in the
alternative PA. As with the initial inception of the
program, each participant continued to attend 1-3
times per week. skinfold.
Table 2. Boxing exercise descriptions
Exercise
Description
Speed Bag
Small, hanging punching bag used for punching in rapid succession to strengthen
hand-eye coordination, rhythm, and speed.
Standing Punching Bag
A larger stationary punching bag is used to strengthen punching power in addition to
side-to-side stepping movements.
Agility Ladder
The ladder apparatus was placed on the floor. Patients completed various footwork
drills for time.
Sparring
Participants undergo sparring drills with program staff, emphasizing punching
accuracy with forward and backward walking movements.
Measures
This study was a descriptive qualitative exploration
into the lived experiences of the participants, as such,
primary data collection was done through qualitative
interviews. To provide a detailed understanding of
participants, basic demographic information
including age, gender, time since PD diagnosis,
common symptoms, and use/type of assistive device
was collected using a basic pencil and paper survey.
Additionally, the survey included the Parkinson’s
Disease Questionnaire -39 (PDQ-39), a 39-item self-
report questionnaire that assesses PD-specific QoL
constructs over the previous month. The PDQ-39
divides result into eight sub-categories: activities of
daily living, attention and working memory,
cognition, communication, depression, functional
mobility, overall quality of life, social relationships,
and social support; with participants ranking
responses to individual questions on a 5-point Likert-
type scale ranging from “never” to “always”
(Jenkinson, Fitzpatrick, Peto, Greenhall, & Hyman,
1997). The inclusion of the PDQ-39 was to provide a
numeric assessment of the participants’ reported
disease progression. If participants were unable to
complete any portion of the survey due to physical
limitations, their caregiver and/or a member of the
research team assisted with completion.
For primary data collection, a semi-structured
interview guide was developed and centered on the
participants' views on the following general topics:
expectations and goals for Thrive-PD participation,
benefits/barriers of the Thrive-PD program structure,
Thrive-PD program staff, the impact of the Thrive-
PD program environment on participation, the overall
role of PA in the participants life, and the
benefits/barriers due to the social aspects of the
Thrive-PD program. Each general topic had several
questions including helping facilitate discussion. The
complete interview guide can be found in Appendix
A (available at: www.shorturl.at/BLMV2).
Data collection
Data were collected through in-person, semi-
structured focus group interviews between the
participants, their caregivers (if present), and the
research team. Ten focus group interviews were
conducted with two to six participants and/or
caregivers per group. Interviews were conducted at
the program facility immediately pre- or post-Thrive-
PD program participation and participants were
randomly grouped based on convenience to their
schedules. Additionally, a focus group interview was
conducted with the three full-time Thrive-PD staff
who developed and ran the program. The same
interview guide was facilitated at each interview, with
a discussion between questions. Probing questions
were used when appropriate to elicit further in-depth
responses. Sessions were conversational with the
interviewer focusing the conversation back on the
questions as needed. Interviews lasted between 30
minutes and 1 hour, were electronically recorded, and
notes were taken on major themes and discussion
topics. Before each interview, the pen-and-pencil
survey with patient demographics, disease
characteristics, and the PDQ-39, was collected.