What is Parkinson's Disease? Why should we be worried about it?
In simplified terms, Parkinson’s disease (PD) is described as a progressive deterioration of vital brain components, accompanied by motor and non-motor symptoms such as rigidity, tremors, loss of balance, anxiety, sleep disturbances, cognitive decline and memory problems, depression, and more (Fothergill-Misbah et al., 2022; Meloni et al., 2021; Swink et al., 2020;).
PD is the “second most common neurodegenerative condition in the United States” (Swink et al., 2020). Currently, over 10 million people are living with PD worldwide and by 2040 this number is predicted to surpass 13 million (Fothergill-Misbah et al., 2022). The primary risk factor for PD is age, specifically 65+ years of age. According to the United States (US) Census, the older adult population is rapidly increasing, with a growth rate of over 34% in the last decade. This population growth is not projected to slow down any time soon, so with the older adult population on the rise, PD should be on the healthcare radar.
Needs Assessment & Literature Review
To assess the need for this capstone project, research related to evidence-based literature was completed, along with collaboration with educational professionals, staff at the proposed capstone site, and my expert mentor. Findings from the research and collaboration were compared, identifying a need for further exploration and development related to the support and resources offered to the PD community. The trending theme identified was that increased support and better access to educational resources for the PD community would enhance quality of life and overall preparedness.
- Parkinson’s disease results in major life changes, including slowing of movements, cognitive changes, impaired mobility, tremors, depression or anxiety, sleep changes, and more (Fothergill-Misbah et. al., 2022; Meloni et. al., 2021; Swink et. al., 2020)
- Individuals with PD may experience a loss of self, decreased social connectedness, increased isolation, shame, embarrassment, self-perceived dependence, stigma, and lower quality of life due to the emotional and social changes that arise from the progression of PD (Soojung et al., 2022).
- Quality of life (QoL), which includes mobility, activities of daily living, emotional well-being, stigma, social support, cognition, communication, and bodily discomfort, has been shown to improve in individuals with PD who attend support groups, compared to those who do not attend (Marco-Kuscera et al., 2018).
- Individuals with PD and their caregivers, and even healthcare professionals and stakeholders, have reported lack of awareness of available resources in the community and poor communication between the varying support systems in PD management (Soilemezi et al., 2022).
Project Description
The capstone project focuses on the development and implementation of a Parkinson’s Disease (PD) support group at an inpatient adult rehabilitation hospital, as well as the development of educational resources for caregivers and patients to use. Research has indicated that patients, caregivers, and professionals report a lack of knowlede related to available resources and educational materials for this community (Soilemezi et al., 2022). Research has also indicated that after attending support groups, individuals and caregivers reported feeling more prepared for the disease journey, more supported, and noted improvement in quality of life during necessary daily activities and skills (Marco-Kuscera et al., 2018).
This capstone marries the development of educational materials and a new support group with current evidence-based research and pre-existing PD support group intervention techniques to promote and encourage participation, education, and improved quality of life. This capstone aimed to improve the support and overall wellness and quality of life experienced within this community.
Areas of Study
Program and Policy Development, Education, Advocacy
Population of Practice
Health & Wellness, Evidence-Based Practice & Research
Project Site/Collaboration
Encompass Health Rehabilitation Hospital of East Valley
Project Objectives/Deliverables:
- Trial run of PD support group at Encompass Health Rehabilitation Hospital of East Valley
- Final run of PD support group at Encompass Health Rehabilitation Hospital of East Valley
- Educational resource guide/pamphlet creation and delivery to patients, caregivers, and expert mentor (photo to the left) Visit pdresourceguide.com for more information.
- Analyzed survey data demonstrating positive response and/or satisfaction to treatment methods offered during and after the hospital stay for patients with PD and their caregivers
The data from survey responses shows overall positive feedback during the inpatient hospital stay
Future Implications for OT
1. Occupational therapists, who have a specific focus on “achieving health, well-being, and participation in life through engagement in occupation” (AOTA, 2020), have a vested interest in the improvements in QoL that PD support groups can offer. Making OT’s the perfect support group facilitators.
2. PD patients have been shown to experience social isolation, but support groups have been shown to improve this factor (along with other factors like education, access to resources, etc.). However, patients, caregivers, and professionals report a lack of knowledge related to these resources. As one of the pillars of occupational therapy, promotion and advocacy for these support groups is a vital OT role.
Christ | Scholarship | Service
Christ: “Be devoted to one another in love. Honor one another above yourselves” Romans 12:10.
Scholarship: Application of clinical knowledge and evidence-based research
Service: Development of a supportive program and educational resources for a community in need
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Project Leader
As the project leader and student, I was responsible for completing all evidence-based research, community research, and building current and future outlines for support groups. I was responsible for pulling together all of the research I was collecting and putting it into an easy to read, friendly to navigate, all encompassing resource guide for patients and caregivers alike. I was also responsible for reviewing survey data from the expert mentor to create a statistical analysis on the responses of patients during and after their inpatient stay related to education level, preparedness, and overall well-being and satisfaction.
Cell: (480) 296-9141
Email: meganschapiro@gmail.com or lawm@huntington.edu
References:
American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process
Fothergill-Misbah, N., Moffatt, S., Mwithiga, H., Hampshire, K., & Walker, R. (2022). The role of support groups in the management of Parkinson’s disease in Kenya: Sociality, information and legitimacy. Global Public Health, 17(8), 1773–1783. https://doi.org/10.1080/17441692.2021.1954227
Marko-Kuscera, M. Kullmann, L., Paulik, E. (2018). Measuring quality of life in individuals with Parkinson’s disease attending a self-help club: Cross-sectional study in Hungary. International Journal of Rehabilitation Research, 41(1), 81-83. https://doi.org/10.1097/MRR.0000000000000266
Meloni, M., Saibene, F. L., Di Tella, S., Di Cesare, M., Borgnis, F., Nemni, R., & Baglio, F. (2021). Functional and Cognitive Improvement After an Intensive Inpatient Multidisciplinary Rehabilitation Program in Mild to Severe Parkinson’s Disease: A Retrospective and Observational Study. Frontiers in Neurology, 12, 626041. https://doi.org /10.3389/fneur.2021.626041
Soilemezi, D., Palmar-Santos, A., Navarta-Sánchez, M. V., Pedraz-Marcos, A., Haahr, A., Sørensen, D., Bragstad, L. K., Hjelle, E. G., Haavaag, S. B. (2022). Understanding support systems for Parkinson’s disease management in community settings: A cross-national qualitative study. Health Expectations, 26(2), 670-682. https://doi.org/10.1111/hex.13691
Soojung, A., Springer, K., Gibson, J. S. (2022). Social withdrawal in Parkinson’s disease: A scoping review. Geriatric Nursing, 48, 258-268. https://doi.org/10.1016/j.gerinurse.2022.10.010
Swink, L. A., Fling, B. W., Sharp, J. L., Fruhauf, C. A., Atler, K. E., & Schmid, A. A. (2020). Merging Yoga and Occupational Therapy for Parkinson’s Disease: A feasibility and pilot program. Occupational Therapy In Health Care, 34(4), 351–372. https://doi.org/10.1080/07380577.2020.1824302