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Parkinson’s disease: Intervening Early Concerning Employment (PIECE)

Posted By Center for Rehabilitation Outcomes Research

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NARIC

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NOW RECRUITING (SEE FLYER)

We are conducting an observational study to learn about how people with Parkinson’s disease address employment challenges over time and what resources they use to help them address these challenges. Study participants will be people with early Parkinson’s disease (diagnosed within the last 5 years) who are currently working and wish to remain working for at least 3 years. When participants enroll in the study, they will receive an educational flyer with information about services they could access for employment-related difficulties. Some of these specialized services include meeting with a social worker or vocational rehabilitation counselor who specializes in employment support for people with disabilities. The research team will follow up with participants every 6 months for 3 years to monitor changes they have made related to their employment.

If you are interested in participating in this study, please contact Ella Nettnin at (312) 238-7275 or enettnin@sralab.org.

Summary

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This project addresses the unique experience of individuals with PD by developing, testing, and disseminating resources and support systems that can be tailored individually to help people maintain employment at their desired level as long as they wish. Specifically, we will test implementation processes and employment outcomes associated with early employment-related interventions. Intervention may be delivered by various members of the interdisciplinary healthcare team for people with PD, including social workers, physical therapists, occupational therapists, or speech therapists. Additional components of a vocational rehabilitation (VR) intervention will be tested, with a focus on job retention, delivered by rehabilitation counselors. VR clinicians have specific training and experience to assist people with disabilities to identify and pursue their vocational/employment goals through vocational assessment, evaluation, and counseling regarding formal and informal job accommodations.

Optimal employment not only decreases individual and societal costs, but it is also associated with greater life satisfaction, quality of life, and health outcomes. PD is a model condition for progressive disorders because it can affect many body systems, thus resources and processes developed for PD may benefit people with other progressive conditions, such as MS. Older workers may also experience progressive limitations that require accommodation. Dissemination activities will include PD-specific and general rehabilitation forums, to ensure broad application of results. Development of implementation strategies that can be shared with healthcare providers may benefit individuals with PD and other progressive conditions.

Aims

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Aim 1: Evaluate and adapt employment retention resources for people with early PD and their interdisciplinary healthcare team.

Aim 2: Describe the implementation processes and core components of VR interventions with a focus on job retention in people with early PD.

Aim 3: Assess employment-related outcomes of a VR intervention for people with PD who were diagnosed in the past 5 years.

Preliminary Results

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In Aim 1 of the study, we (1) reviewed existing resources related to PD and employment with input from clinical and community expert stakeholders, and (2) assessed the needs for improved resources and interventions for people with PD and their healthcare teams.

Results of the resource review suggest there is a significant gap between the patient-facing online content and peer-reviewed literature on PD and employment. Our needs assessment suggests that people with PD have employment issues that are not being addressed, frequently because people do not know that there are professionals who can help. Individualized interventions would allow people with PD to access the information and support that they need when they need it.

Dissemination

Smartphone and Computer Strategies for Tremor & Stiffness

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There are various options to make using your smartphone easier to use when you have tremors or stiffness due to Parkinson’s Disease. Some small adjustments on your phone may result in your feeling much more confident in your ability to control your device.

Download the instructions from the Android or iPhone, Mac, and Windows instructions below. 

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The project is part three of a four part Rehabilitation Research and Training Centers (RRTC) grant sponsored by NIDILRR. The project principal investigator is Dr. Miriam Rafferty, who will be collaborating with Parkinson’s disease and vocational rehabilitation experts at Northwestern University, the University of Washington, and the RRTC program director, Dr. Allen Heinemann.

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