Background: Parkinson's disease (PD) is a major public health concern that affects the lives of nearly one million older adults in the United States. According to the World Health Organization, disability and deaths related to PD are rising more than any other neurological disease (2022). PD is ranked the 14th leading cause of death in the United States and is expected to reach 1.2 million by 2030 (Moya-Galé & Levy, 2019). Hypophonia is the slowed contractions of the muscles used in speech paired with the reduced movement in the muscles that support breathing, vocal loudness, and articulation (Parkinson Foundation, 2023). Current treatment options for the management of these symptoms include medication therapy or behavioral speech therapy. Individuals living with Parkinson's disease (ILwPD) have difficulty maintaining the skills learned in speech therapy and are at an increased risk for decreased quality of life (QoL) and isolation (Bryans et al., 2021). There is a gap in the current literature of the lived experience of ILwPD and the barriers and facilitators to maintaining skills learned in behavioral speech therapy. Aim: The purpose of this Quality Improvement (QI) project was to capture the personal experiences of ILwPD and hypophonia. Additionally, to increase Advanced Practice Registered Nurses (APRNs) knowledge of the strategies used to assist ILwPD with resources for management of PD, and educate APRNs on the barriers and facilitators of the transition from using the techniques learned in behavioral speech therapy to daily activities. Method: A speech language pathologist (SLP) served as community liaison and provided contacts for opportunities for recruitment for the QI project, which included the Michigan Parkinson's Foundation and a local PD support group. The QI team attended a meeting of the local support group to assist with recruitment. Recruitment for the project stalled using the provided opportunities and required the QI team to expand recruitment to other local support/exercise groups and to correspond with a local neurologist, whose specialty includes working with ILwPD. The QI team attended a virtual conference of the American Parkinson Disease Association (APDA) which provided an opportunity to listen to a panel, consisting of ILwPD and a caregiver of an ILwPD, about their lived experiences. Inclusion criteria was used to screen participants. If participants met the inclusion criteria a Zoom© interview was conducted using a series of questions covering topics regarding experiences since being diagnosed with PD, experience with behavioral speech, and overall guidance for individuals diagnosed with PD. The responses were transcribed and analyzed for the identification of 4 themes. Secondary data was collected on participants who did not meet inclusion criteria for the enrichment of the QI project. Results: Seven individuals participated in the QI project. Three individuals had secondary data collected. Four individuals met inclusion criteria and were interviewed. Demographic data was collected on all seven participants for the QI project. In an analysis of the transcriptions by the QI team four themes emerged: 1. loss and judgment, 2. self-awareness, 3. resiliency, and 4. encouragement. The QI team also identified barriers and opportunities for improvement related to aspects of the PDSA process of this project. Conclusion: The literature supports the benefits of speech therapy as a critical intervention for individuals with PD who have experienced changes with communication, such as hypophonia, as medication typically does not improve these symptoms. There is a lack of utilization to refer ILwPD to behavioral therapies and a lack of awareness of the resources that are available within the community. This project allowed the QI team the opportunity to explore the perspective of ILwPD who have experienced communication changes and have participated in speech therapy to better understand the potential barriers and facilitators. To improve APRN practice in the future, it is important to identify the cardinal symptoms of PD, initiate a collaborative care team for the ILwPD centered around rehabilitative therapies, and to understand and utilize the resources locally and nationally for ILwPD. This could include a local referral to SLP for behavioral speech therapy or providing information on online resources (i.e. Parkinson's Voice Project).
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