EQOL Journal (2022) 14(2): 21-30

SPECIAL COMMUNICATION

Moving beyond the physical: exploring the holistic benefits of a

therapy-based physical activity program for individuals with

Parkinson’s disease

Kimberly S. Fasczewski

✉ • Nolasco R. Stevens

• Hannah S. Michels

•

Jennifer S. Howard

Received: 27

May, 2022 DOI: 10.31382/eqol.221203

Accepted: 5

September, 2022

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).

✉

fasczewskiks@appstate.edu

Appalachian State University, Department of

Health and Exercise Science, Boone, North

Carolina, United States

EQOL Journal (2022) 14(2): 21-30

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

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

Gender

Males

Females

Age

60-69

70-79

80-89

Time since diagnosis

0-5 years

5-10 years

10-15 years

15-20 years

Unknown

Table 1. Descriptive data (continued)

Variable

Median

Range

Parkinson's Disease

Questionnaire - 39

Mobility

(20-88)

ADLs

(27-77)

Emotional Well-being

(20-80)

Stigma

(20-50)

Social Support

(20-60)

Cognition

(20-80)

Communication

(20-87)

Bodily discomfort

(27-80)

PDQ-39 Summary Ind.

(25-59)

Use of Assistive Device*

None

Cane

Walker

Wheelchair

Other Unspecified

devices

* – 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

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 participant’s 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.