Abstract
Introduction
The social isolation imposed by the COVID-19 pandemic had far-reaching consequences for vulnerable populations such as people with Parkinson’s disease (PD), resulting in disease-specific negative mental health outcomes and physical dysfunction (Ahn et al., 2022). PD is a neurodegenerative disease that negatively affects physical and cognitive functioning over time (Hoehn & Yahr, 1967), with advancing age being the most significant risk factor for onset of disease (Reeve et al., 2014). Individuals with PD are at high risk for social isolation associated with worsened health outcomes and increased mortality (Brooks et al., 2021; van der Heide et al., 2020). When considering individuals with PD living in rural settings, the already limited resources for PD-specific programming of all types evaporated due to COVID-19, exacerbating negative health outcomes (Brooks et al., 2021). As a result, in combination with social isolation and increased psychological challenges, the PD population experienced higher levels of depression and anxiety during the COVID-19 pandemic compared to neurological healthy older adults (Bhalsing et al., 2018; Marsh, 2013; Oliveira de Carvalho et al., 2018). This social isolation and increased psychological challenges for those living with PD resulted in negative outcomes on physical functioning (Brooks et al., 2021; El-Sayes et al., 2019).
One way to mitigate physical decline in individuals with PD is with physical activity (PA) (Bhalsing et al., 2018; Oliveira de Carvalho et al., 2018). PD-specific therapy-based PA is critical for effective symptom management. Prior research has highlighted the positive therapeutic effects of PA and exercise on PD’s motor and nonmotor symptoms associated with PD (Amara & Memon, 2018; Crowley et al., 2018, 2019; El-Sayes et al., 2019; Oliveira de Carvalho et al., 2018). Additionally, PA promotes neuroplasticity, enhances dopamine production, and promotes social participation, leading to an improved quality of life and reduced comorbidities in older individuals (Oliveira de Carvalho et al., 2018; Sacheli et al., 2019). Social participation is active engagement in any activity based on sports, cultural, recreational, political, and volunteer community organizations (Hyyppä & Mäki, 2003). In older adults, social participation is considered a stimulus to increase PA and improve cognitive functions, associated with a better quality of life, and related to lower comorbidities and disability (Everly et al., 2023; Rosso et al., 2013).
Comprehensive PA programming for individuals with PD must address not only physical outcomes and social engagement but also the basic psychological needs outlined by Self-Determination Theory (SDT). According to SDT, when the needs of competence (feeling confident in one’s abilities), autonomy (sense of control over behavior), and relatedness (sense of meaning and social connection) are met, individuals become more intrinsically motivated, which leads to sustained participation (Deci & Ryan, 2000; Ryan & Deci, 2020; Teixeira et al., 2012). Often, these needs are met implicitly in programs (Teixeira et al., 2012), such as when participants form social bonds that enhance motivation. The more individuals participate in these programs, the more self-efficacy they build, and their motivation to participate grows. Unfortunately, the COVID-19 pandemic disrupted programming, potentially reducing motivation and adherence, especially in rural areas with limited access to alternate facilities.
There are gaps in the literature surrounding the development and effective use of limited resources for rural populations living with PD. The COVID-19 pandemic forced communities to adapt PA-behaviors, exposing weaknesses in available resources and support, particularly in rural areas where resources were already scarce. Examining these adaptations in PA-behavior affords insight into the aspects of PA that were deemed necessary for these individuals. It also explores the gaps that the individuals in these rural communities could not fill independently. Therefore, the aim of this research was twofold. First, to assess how older adults with PD in a rural region adapted their PA routines in response to facility closures and pandemic restrictions. Second, we sought to explore the role of social support systems, including familial and friendships, in mitigating the potential impact of social isolation on individuals with PD.
Methods
This mixed-methods study relied primarily on qualitative interviews with quantitative elements incorporated to clarify and confirm results. The study adhered to the EQUATOR guideline: Standards for Reporting Qualitative Research (SRQR).
Participants
Participants were recruited from three rural counties in northwestern North Carolina, USA, using the Health Resources and Services Administration’s (HRSA, 2024) definition of “rural community.” The region includes one town classified as a “micro-area” with limited neurologist offices and a physical therapy-based PA program for individuals with PD. Eligible participants had a clinical diagnosis of PD before the COVID-19 pandemic. Recruitment was done through the Parkinson and Movement Disorders Alliance (PMD Alliance), and participants were asked to complete a brief survey on their current PA levels and the pandemic’s impact on their lives and PA-behavior. Researchers had no prior relationships with participants.
Measures
Data were collected using both quantitative and qualitative measures. The Lubben Social Network Scale (LSNS-6) was used to assess social isolation and social support from family (LSNS-6 Family) and friend (LSNS-6 Friends) networks. The Social Engagement/PA measure was derived from Glass et al. (2006) and was used to assess how individuals engaged with activities of different types and with other people. Open-ended conversational-type questions were used to explore the experiences of participants. These questions were framed around participants’ general attitudes, perceptions, and barriers surrounding PA during COVID-19 and how they did or did not overcome these barriers.
LSNS-6
The overall LSNS-6 ranges from 0 to 30, with higher values indicating less isolation and a score of ≤12 indicating social isolation. The LSNS-6 Family and LSNS-6 Friends subscales range from 0 to 15 (Lubben et al., 2006). The cut-off scores for the subscales were verified at 6 to effectively distinguish between individuals experiencing social isolation and those who are not.
Social Engagement/PA
The Social Engagement/PA measure was divided into the following subscales: Productive Activities (SE-ProAct; e.g., gardening, cooking, volunteer or paid work), Social/Leisure Activities (SE-SLAct; e.g., social outings, playing games, church), and Physical Activity (Se-PA; e.g., active sports, walking; Glass et al., 2006). Sum scores ranged from 0 to 10, 0 to 8, and 0 to 6, respectively, with higher scores indicating more social engagement in each subscale construct (Lubben et al., 2006).
Open-Ended Questions
Participants were asked a series of open-ended questions about their attitude toward and participation in PA. These questions were developed using the main research question as a guide and included:
What role does physical activity play in your everyday life?
Tell me what your physical activity was like prior to COVID-19.
Tell me about what your physical activity is like now.
How has your physical activity changed over the last year?
Describe your overall quality of life.
Tell me about the role physical activity plays in your overall quality of life.
These questions were designed to elicit conversation and allow the participants to describe their relationship with PA in their own words. Clarifying questions were used for follow-up to gain more insight into specific responses.
Procedures
Participants were contacted via email or phone, received a concise study summary, and were asked to provide contact information if they wished to participate. Researchers used an exhaustive list of individuals provided by the PMD Alliance, and all members were contacted for inclusion. All individuals who agreed to participate provided written or oral consent and were informed that the call was being recorded. Interviews were conducted by research team members via phone in a private room and lasted between 30 min and 1 hr. All interviewers received comprehensive training in conducting the interviews and strictly adhered to the provided script for consistency and standardization in data collection. During the interview, participants were asked about basic demographics regarding COVID-19, their PA, and health. The scale questions regarding social networks, social engagement, and PA were collected via verbal responses. The bulk of the interview consisted of open-ended questions, which were conversational. Researchers asked probing and clarifying questions and redirected the conversation back to the topic as necessary (Patton, 2002). Participant name and contact information were kept confidential, and all data were de-identified for analysis, with any identifying information destroyed upon completion of data collection.
Data Analysis
Descriptive and inferential statistics were analyzed using SPSS version 23 (IBM Corporation, 2022). Open-ended interview question data were analyzed using a descriptive qualitative approach25 using the following steps: Step 1: Data were transcribed verbatim using a university-approved transcription service and double-checked for accuracy by a research team member (Patton, 2002). Step 2: The research team met and read the transcripts collectively and worked together to identify the main themes that arose (Sandelowsk & Barroso, 2007). Step 3: Two research team members individually read each transcript, and responses were coded according to the aforementioned themes (Creswell, 2013). To reduce bias, team members did not code the interviews they conducted. During coding, if a response did not fit with one of these pre-agreed-upon themes, the response was coded as “other.” Step 4: The entire research team then met to discuss the coding, and anywhere the coding did not agree, the meaning was discussed until a consensus was reached (Creswell, 2013). For the responses coded as “other,” the team determined if each response fit within an existing theme or if a new theme emerged. Step 5: Once consensus was reached on all responses, the team held an additional meeting to discuss each theme’s meaning (Creswell, 2013). Representative quotes were pulled from the responses to illustrate the main ideas of the themes. For each step, consistency was maintained through the iterative process of individuals and the entire team working together to check accuracy and confirm that themes and analyses were connected to the research questions. This method was used to eliminate researcher bias.
Results
The overseeing Institutional Review Board approved the study, and 84 individuals were contacted to participate; 32 declined to participate, 35 did not respond, and 6 could not be reached. Data were collected from 11 participants, 5 females and 6 males, age 78.7 ± 2.3 years, diagnosed with PD 11.3 ± 6.88 years prior (range 1–23 years). Caregivers assisted three participants during their interview. For descriptive statistics and individual responses of participants, see Table 1.
Participant Descriptives and Individual Scores on the Lubben Social Network Scale and Social Engagement/Physical Activity Measure.
Note. +Caregiver gave assistance with interview process.
Lubben Social Network Scale: Family Social Engagement (LSN-family); Friends Social Engagement (LSN-Friends).
Social Engagement: Productive Activities (SE-ProAct; e.g., gardening, cooking, shopping, volunteer work, paid work), Social/Leisure Activities (SE-SLAct; e.g., social outings, playing games, church), and Physical Activity (Se-PA; e.g., active sports, walking, other exercise).
Social Isolation and Engagement
The LSNS-6 values ranged from 9 to 27 (mean 18.8 ± 5.11), with LSNS-6 Family range from 6 to 14 (mean 10.0 ± 2.79 and LSNS-6 Friend range from 3 to 14 (mean 8.8 ± 3.25). Additionally, only one participant exhibited a total LSNS-6 score <12, indicating a predominantly robust social support system among individuals with PD. A closer examination of the LSNS-6 subscales revealed a similarly positive trend, with one participant reporting an LSNS-6 Family score of 6 or below, while three participants exhibited scores of 6 or below for the LSNS-6 Friend subscale. The Social Engagement scores were reported as follows: SE-ProAct was 4.36 ± 1.57 (range 2–7), SE-SLAct was 4.27 ± 1.79 (range 1–6) and SE-PA 3.55 ± 1.29(range 2–6).
Qualitative Themes from the Interview
Quality of Life
Participants reported their quality of life was generally good but was impacted due to the challenges of living with PD. “Well, every day is a battle with Parkinson’s” (P6). Specifically, when speaking about quality of life, one participant stated “it’s good” (P9). Others reflected this general sentiment. Some participants had a very positive outlook on their lives with PD, one participant stated “I think I have great quality of life” (P10) and “I have no reason to complain. There’s too many people that are way worse off than I am” (P10). Quality of life status changed with the fluctuation of PD symptoms and progression. One participant noted, “My quality of life changes daily. Every day, there’s something different that I have to cope with or deal with” (P5). Some individuals reported clinical-type mental health challenges, such as depression tied to their PD that impacted their quality of life. “Well, every day is a battle with Parkinson’s. And so it affects my quality of life. . .” (P6).
Life Changes Due to COVID-19
COVID-19 resulted in a loss of social interaction and limited activities, including PA based activities, resulting in those with PD spending more time at home. As one participant said “the only time that we went outside the house, was to do grocery shopping” (P5). Those with PD turned to virtual forums for social interaction, support groups, doctors appointments, but “It just didn’t work well” (P4), mostly due to challenges understanding technology and experience with “burnout on Zoom meetings” (P4). Many participants were afraid to return to their everyday lives, noting once COVID-19 hit they “kind of went into hiding” (P1). Overall, COVID-19 created isolation from all aspects of their normal day to day lives.
Importance of Social Support
Participants reported that family and friends were important to their primary social support system. Responses coincide with the data from the LSNS-6, indicating that participants did not greatly suffer from social isolation. Spending time with others with PD and similar in age was key to positive social influence. Participants noted that COVID-19 disrupted their social support. “Socialization has definitely decreased” (P8). One participant stated that without the “social interaction” aspect of the PA, they felt “complacent” in not engaging in PA (P4). Despite COVID-19 limiting in-person social interaction, participants attempted to find other ways to connect. Some participants noted that they were motivated to keep up PA because they would “be very isolated if [I] didn’t” (P2). Virtual group PA meet-ups helped most participants “really stay on top of [PA]” (P7). However, the participants that engaged in virtual PA programs noted the social interaction was not the same as it was before COVID-19 because the virtual format “just didn’t work well” . . . “because people would have trouble signing on, they don’t like the Zoom, they got burnout on Zoom meetings. And I get it. And even though we tried, it just didn’t work” (P4).
Importance of PA
All participants reported PA played an important role in their everyday routine. One participant described PA as having a “very, very important role” (P1) and another explained it was a “high priority” (P11). Participants indicated the importance of PA was directly tied to PD; one participant stated “Now [PA plays] an important role because of the [PD] diagnosis, but before that, it wasn’t that important” (P9). Participants noted that PA was “essential to [controlling PD] because it’s an everyday thing” (P3) and “I realize it’s the only outlet for a Parkinson person, period. That’s it. Physical [activity]” (P6).
Motivation for PA
Motivation to engage in PA for those with PD was multifactorial. One large motivator to engage in regular PA was being “afraid [of] the impact of not keeping up that physical activity” (P8) and the negative physical impact of not engaging in regular PA. One participant noted, “It [PA] has everything to do with [staying healthy]. If I miss class, I can tell in one day just missing one class. I can tell that I’ve missed it, I need to have it” (P1). Participants did report occasionally struggling to stay motivated but pushing through it. “With Parkinson’s you get ups and downs. So sometimes you’ll feel crummy and not want to do anything, but I normally do it anyway” (P10).
Motivation for engaging in PA was also directly tied to social engagement and COVID-19 resulted in a decrease in motivation to engage in PA due to the social isolation and lack of structure. One participant reported their motivation decreased during COVID-19 because “when I’m in a class, I push other people and I expect them to push me. And now I’m accountable to myself and it’s more difficult being accountable to yourself because you just don’t try as hard”; this participant goes on to say they “just don’t feel like I have the drive [for PA] that I. had before. Without that drive you kind of go backwards” (P4). Many other participants also noted the difficulty of staying motivated to engage in PA without the social engagement experienced in PA settings before COVID-19. Participants reported finding other sources of motivation, whether it was tied to avoiding the negative symptoms of PD or finding social support. One participant noted that their motivation for PA “[has] gotten a little stronger than it was before” because his wife, who he calls “Drill Sergeant,” keeps him moving (P3).
COVID-19 Adaptations/Impact on PA
All participants’ activities were changed due to COVID-19, with PA and social events being halted. Some individuals adapted to COVID-19 to keep up with their PA routine. Examples of this included, “turned our garage into a gym” (P8), “bought a stationary bike” (P11), found PD specific exercises on “YouTube” (P2) or took “online classes” (P6). One participant noted he could tell a difference between his PA level and those that did not keep up their PA during COVID-19 when in-person classes resumed, stating “you could tell the difference. They slid backwards where I did not (P7).” Despite the adaptations, COVID-19 still impacted these individuals’ PA levels and engagement. One participant noted that their PA was “not as much a part of my everyday life right now as it was before the pandemic” (P2). Another participant stated, “I miss walking. I miss hiking. I miss being up with the leaves. I just miss all that good stuff” (P1).
Functioning
Participants reported direct link between PA and functional movement/PD symptoms. One participant stated “if you don’t [participate in PA], you lose your functions, the ability to do things you used to do” (P5). PA was incredibly important to participants; their perception was it increased functioning and slowed the progression of PD. One participant stated, “If I miss one class, I can feel myself going backwards” (P1). Participants used PA as an outlet for symptom control, therefore saw a direct link between PA and PD.
Discussion
This study examined how individuals with PD living in a rural-defined region adapted their PA during the COVID-19 pandemic. Despite the pandemic’s end, these insights reveal the motives and importance of PA, informing effective care protocols. All participants adapted their activity to accommodate the closure of the facilities that provided structured activities. PA was a necessary part of their daily routine and was seen as an aspect of their treatment protocol. As such, PA was not optional. Interestingly, only 14% of those contacted participated, suggesting self-selection bias, with respondents likely being those who managed to adapt. In a rural community where 55% of the population is at or below the poverty line, many individuals lack the resources for home workout facilities or self-funded PA programs (U.S. Census Bureau, 2023).
Connecting PA to Controlling PD
Participants saw a direct link between PA and the control of PD symptoms/progression, and this motivated them to find a way to continue with PA even when their normal facility closed. This is not unexpected and aligns with previous research with similar chronic disease populations (Fasczewski & Gill, 2019). Identified regulation, where the individual’s motivation is partially self-determined but still relies on some external factors, explains this connection to the outcome (Deci & Ryan, 2000). PA levels influence disease management, including motor and non-motor symptoms, and its subsequent impact on overall quality of life (Bhalsing et al., 2018). The motor control and functional ability to effectively execute activities of daily living impact self-efficacy (competence) and therefore quality of life improves (Fagerström & Borglin, 2010; Ritter & Bonsaksen, 2019). The physical outcome and benefits from the PA drive the individual to remain motivated and participate. This type of motivation can become a powerful tool for providers if appropriately leveraged. By developing educational components to programming that focus on the physical benefits tied to PD, and tracking outcomes to increase confidence, individuals remain more motivated to participate. COVID-19 did not limit PA for the individuals in this study because PA was not seen as a choice. It was part of the therapeutic modality used to treat PD. The only thing the COVID-19 pandemic did was prompt these individuals to find a different means of PA. The pandemic created a situation that highlighted the successes of highly motivated individuals to remain physically active regardless of the limitations placed upon them. By understanding the approach of these individuals, providers can develop more effective PA programming.
The Impact of Social Isolation
Although participants pointed to PA to control PD and positively influence their quality of life, many reported struggling with isolation and depression during COVID-19. This was due to the limited social connections prompted by the pandemic shutdown. Depression is a common symptom associated with PD, with roughly 50% of people reporting some level of depression (Parkinson’s Foundation, 2024). Improving physical symptoms of PD through PA does improve quality of life, however, the isolation of the COVID-19 pandemic was still felt by these individuals. PA helped control the physical symptoms, but individuals with PD tend to self-isolate from most social situations so the loss of their few meaningful social connections, combined with the predisposition for depression, created mental health struggles even for those who did remain active (Knapik et al., 2021; McDaniels & Subramanian, 2022). Quality of life and the impact of social isolation on depression are all tied to the importance of social connections participants missed from their regular PA groups. Leveraging data obtained from the LSNS-6, the participants’ responses reinforced the pivotal importance of familial and friendship networks in their lives, suggesting a limited experience of social isolation. Additionally, findings highlight the positive impact of engaging with peers of similar age and PD status, underscoring the significance of these interactions in fostering favorable social influences and perceived quality of life. Caretakers provided a foundation of support and encouragement for those with PD to continue participating in PA. The continuation of PA for some participants might not have been successful without the social support of their caretaker. These caretakers created a sense of belonging, or relatedness, lost in the group PA due to COVID-19.
Considerations for Future Programming
When developing PA programming, there should not be an assumption that the inherent psychological needs of competence, autonomy, and relatedness are being met. Programs grounded in SDT, especially for older adults with chronic diseases like PD, show better adherence (Teixeira et al., 2012). Participants highlighted the importance of social connections in group PA classes, which were absent during the pandemic, affecting their quality of life. Even among highly motivated individuals, social connections were critical to positive PA participation and directly tied to quality of life. In rural areas with limited therapy-based programs, fostering social connectedness is vital. While some participants developed social connections, others might feel excluded. Programs should, therefore, intentionally foster social connectedness and measure these constructs, using tools like the Behavior and Regulation in Exercise Questionnaire (Version 3).
The next steps for the current community involve a longitudinal follow-up to assess the lasting effects of these adaptive interventions. These insights are key to developing sustainable, community-based PA programs, especially in the face of future isolation events. In resource-limited rural communities, it is essential to maximize available assets by creating cost-effective access to PA facilities and group opportunities. Partnering with a local University’s Health Sciences program could provide no-cost programming and expand access. Though barriers like transportation and facility availability exist, this collaboration could offer a cost-effective solution. While not all rural communities have this option, success depends on utilizing available resources.
Limitations
As previously stated, only individuals who agreed to participate remained physically active during COVID-19. Presumably, those individuals who could not remain active did not respond to interview requests due to the stigma associated with the specific research questions (Austin et al., 1981). This provides a one-sided view of the experiences with PA participation for individuals living with PD during COVID-19. As such, the results should be interpreted cautiously. While the data are valuable, future research should focus on those unable to stay active during the pandemic, as their insights would provide a more complete understanding. Furthermore, the small sample size limits the generalizability of the quantitative findings, warranting future research with larger samples to validate these results and enhance statistical robustness.
Conclusion
The results of this project reflect the ability of a small group of older adults with PD living in a rural community to remain physically active despite the challenges faced during the impact of the COVID-19 pandemic. Their attitudes, perceptions, and the barriers they faced lend valuable insights into the real-world struggles of older adults living with PD. This information highlights the gaps in access, programming, and support these individuals faced pre-COVID-19. Living in rural communities can present unique challenges regarding access to care. In the current study, this access was even more limited during the pandemic, forcing these older adults to find creative alternatives to their regular programming to remain physically active. In this way, the pandemic becomes a valuable learning tool to allow a better understanding of the type of support individuals with PD need moving forward. Social isolation, access to appropriate PA programming, and motivation for long-term PA are challenges not exclusive to the pandemic and, therefore, need to be addressed in future programming. Fortunately, the shortcomings highlighted here are primarily addressed with structural changes to existing programs to include planned social connections, a focus on competence through increases in tracking progress and increasing self-efficacy and considering overall quality of life in program outcomes. All of which are feasible for rural programs with limited resources.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.
Ethical Approval
The ethical approval of this study was obtained from Appalachian State University IRB [21-0204].
Data Availability
Data can be made available from the corresponding author upon reasonable request and at the discretion of the authors.
