1 Individuals with Parkinson’s Disease and Their Experiences with Changes in Communication and Behavioral Speech Therapies Cherilyn Patton BSN, RN DNP student Jacob Bryde BSN, RN DNP student Michigan State University College of Nursing April 2024 2 TABLE OF CONTENTS Abstract.………………………………………………………………………………..................5 Introduction.…………………………………………………………………………....…............7 Box 1…………………………………………………….………………………..8 Review of Literature…………...….….….….….……….….….….…….……....………......…....9 Pathophysiology of Hypophonia………….….…………………......................................9 Figure 1..................................................................................................................9 Symptomatology……………….………………...…………………………....…….......10 Internal and External Cueing….……………….…………………………......................10 Evidence Based Interventions...............……….……......………………....…….……...............12 LSVT-LOUD, SPEAK-OUT, and Lombard Devices…...……….............…….….........12 Impact………………………………………………………………………………….……......15 Quality of Life……………….......………………….…………...…......….......…...…...15 Fatigue…….…………………………...…….……………….………...…....…….........15 Social Engagement/Isolation............................…..........…..........….……...….…...…....16 Depression/Anxiety…………………...………………………......….…………...…….16 Spiritual Distress….………………........……………………….………….…...….........17 Quality Improvement Question.…………………………………….….…...……….…...…......17 Transfer of Treatment Problem.……………………...……........................…….….......17 Social Determinants of Health.………...……...……………………........……...……...19 Figure 2................................................................................................................20 Conceptual Framework………………………………………………………….........………...21 Lewin’s Change Theory……………….…...………...….………………….….….........21 Figure 3.................................................................................................................21 3 PDSA Cycle Model…………………….….………...…………………….…...….........22 Figure 4………………………………………………………………………….23 Methods ………………………………………………………………….……...………….......23 Recruitment Considerations …………………...………………….………...….…………........23 Eligibility Criteria…………………………….….….........…………….………….…....24 Survey Question Development ……………………….......……………….……….…………...25 Interview Process.………………………...………………………………….…...…...…...…....25 Setup………………………………………………………………….….….………......25 Project Site and Population……….……………………….…………………...…..........26 Ethical Considerations/Protection of Human Subjects.….………….…...….….….…....26 Goals, Objectives, and Expected Outcomes.…...………………...…………………….……….26 Discussion……………………………………………………….…………….…………...…....27 Recruitment and Interviews……………………………………...........………………...27 Analysis and Theme Identification...…………… ……………………………………………...28 Table 1..................................................................................................................28 Table 2..................................................................................................................30 Themes from QI Participants………………...……………...….……………………….31 Secondary Data Theme….…...…....….….….………………….….…….............……...40 Barriers….………………………………………...…………...……........…………...…41 Box 2.....................................................................................................................42 Opportunities…………………………………………...…………………………….….44 Box 3…………………………………………………………………….44 Impact on Clinical Practice…………………………………………………………………...…46 Box 4.........................................................................................................49 4 References.…………………………………………………………………….…………....…...50 Appendix A. Anatomically How Sound is Produced................……...……...………….……....58 Appendix B. Community Partner Agreement Letter…………………............……......…….….59 Appendix C. Recruitment Letter.………....….….….….……….…............................…….…...60 Appendix D. Recruitment Flyer.……...........……......….………...…...…........…………..........62 Appendix E. Initial Phone Screening Script.…………………...……….……....…….…...........63 Appendix F. Qualtrics Survey.……...……………………………......………………………....68 Appendix G. QI Interview Script.…………………………….......….…...........…….…………72 Appendix H. IRB Approval Non-Research Letter.….…….…...………………..........…...……77 5 Abstract 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 6 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). Keywords: Parkinson’s disease, hypophonia, LSVT, SPEAK- OUT, speech therapy, transfer of treatment. 7 Individuals with Parkinson’s Disease and Their Experiences with Changes in Communication and Behavioral Speech Therapies The National Institute on Aging (NIA) defines Parkinson’s disease (PD) as the degeneration of nerve cells in the basal ganglia of the brain which causes small clusters of brain cells (neurons) to die as the disease progresses (2022). The gradual loss of these neurons reduces levels of a chemical called dopamine that transmits messages to the parts of the brain that coordinate muscle movement (NIA, 2022). The cause of PD is unknown and is believed to have a strong correlation to an individual’s genetic makeup and environmental exposures (Ball et al., 2019). PD is the second most common neurodegenerative disorder in older adults (Moya-Galé & Levy, 2019). In the United States (US), every year 90,000 individuals are diagnosed with PD. There are over one million individuals living with PD (ILwPD) in the US, and ten million individuals affected worldwide (Parkinson’s Foundation, 2023). There is a higher prevalence of PD in adults over the age of sixty; men are diagnosed more frequently than women (World Health Organization [WHO], 2022). A family history of PD increases the likelihood of developing the disease, as an estimated 15 to 25% of ILwPD have a known family history (National Institute of Neurological Disorders and Stroke [NINDS], 2023). PD has been classified as a spectrum disorder related to the progression of life-limiting movements, disabling cognition, and psychiatric symptoms (Aarsland et al., 2021). Parkinson's spectrum disorders (PSD) are a group of neurodegenerative disorders with motor symptoms that often overlap with those seen in PD (Katz, 2020). There are 4 cardinal signs of PD which affect motor movement (see Box 1). Box 1 4 Cardinal Signs of Parkinson’s disease 8 4 Cardinal Signs of Parkinson’s Disease Bradykinesia (slow movement) Impaired balance Muscle stiffness Tremor (Goubault et al., 2018) Involuntary facial movements and muscle contractions, known as dyskinesia and dystonia, contribute to limitations in speech and mobility in ILwPD (WHO, 2022). 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 (see Appendix A) (Parkinson’s Foundation, 2023). The primary aim of this quality improvement (QI) project was to identify and understand how ILwPD managed hypophonia and the barriers and facilitators of incorporating techniques from behavioral speech therapies into daily life. Advanced practice registered nurses (APRNs) in primary care will most likely have patients with neuromuscular diseases such as PD. Collaboration of care is necessary to address the movement disorder symptoms that will progressively affect ILwPD ability to independently perform activities of daily living (ADL) and communicate. APRNs can refer to a neurologist, a speech language pathologist (SLP), physical therapist (PT), occupational therapist (OT), or dietician. For APRNs to more thoroughly and holistically treat ILwPD, it is important to provide insights about the lived experience of PD and hypophonia. This QI project gathered information that can be added to APRN curriculums. 9 Review of the Literature A literature review was conducted utilizing PubMed and the Cumulated Index to Nursing and Allied Health Literature (CINAHL) using Boolean search terms of Parkinson’s disease, hypophonia, dysarthria, older adults, Lee Silverman Voice Therapy (LSVT)-LOUD, SPEAK OUT, and transfer of treatment. Articles reviewed were dated between 2018 and 2024, from the US, the United Kingdom, Australia, or Canadian academic journals; all articles were in English. Titles and abstracts were reviewed for inclusion criteria. Articles were excluded if they pertained to other chronic neurodegenerative diseases, children with neurologic diseases, the treatment modality was not based on behavioral speech therapy, results measured were not speech related, and the subject’s primary language was not English. Additional articles included in the literature search were based on being considered classics by the SLP profession. Pathophysiology of Hypophonia The pathology of hypokinetic dysarthria is the result of basal ganglia dysfunction [see Figure 1] (Arnold et al., 2014). The speech impairments of PD are collectively referred to as hypokinetic dysarthria, which is a decrease in loudness, pitch variation, and a decline in articulation (Smith & Caplan, 2018). Vocal changes occur in PD patients throughout the spectrum of the disorder (Yang et al., 2019). Hypophonia (reduced speech intensity), is one of the most challenging non-motor symptoms affecting communication in ILwPD. Figure 1 Location of Basal Ganglia in the Brain Figure from a US government public domain image by the National Institute of Health available at https://www.nia.nih.gov/health/parkinsons-disease. 10 Symptomatology Communication impairments become more apparent as PD progresses, impacting the ability to articulate, recall words, stay on topic during a conversation, and variations in speech. ILwPD and hypophonia speak with a soft, whispery voice that is often monotone, flat, and typically begins before dysarthria (Fabbri et al., 2017). In ILwPD, motor symptoms are routinely first managed with a dopamine replacement therapy drug such as carbidopa-levodopa (Goubault et al., 2018). Levodopa can improve motor symptoms; however, this medication therapy is either ineffective or the effectiveness wanes over time failing to improve hypophonia (Goubault et al., 2018; NINDS, 2023). In cases where medication therapy is not effective in treating hypophonia, ILwPD can be referred to a SLP. SLPs conduct assessments and develop treatment plans with interventions that focus on voice symptoms by training ILwPD to speak more loudly through cueing. Cueing is the deliberate reference to a specific action or movement activating a different part of the brain, which helps elicit and facilitate the action or movement (Ginis et al., 2018). Prior to discussing some of the current behavioral speech language therapies, the value of cueing as the basis of behavioral therapies for ILwPD is described. Internal and External Cueing The brain of ILwPD attempts to form alternative neural pathways for eliciting muscle movements; no definitive alternative pathways have been published in the literature (Ginis et al., 2018). Therapists utilize cueing to help ILwPD learn to activate different neurological pathways for speech and movement to overcome the pathways that have degenerated due to disease processes. Failure, or freezing, of gait is a motor symptom where the ILwPD experiences difficulty initiating the movement necessary to take a step forward (Delval et al., 2014). Imaging performed on ILwPD who experience failure of gate (related to the cardinal signs of postural instability and bradykinesia), demonstrated a potential compensatory pathway for movement 11 through activation of the prefrontal cortex, in the premotor cortex of the right hemisphere, when receiving auditory cues (Ginis et al., 2018). ILwPD who did not receive auditory cueing demonstrated lesser activation of the lateral premotor cortex (Ginis et al., 2018). Therefore, in ILwPD whose symptoms are refractory to pharmacological management, therapists utilize evidence-based (EB) therapies to help ILwPD with hypophonia and failure of gait that are centered around cueing (Delval et al., 2014). Cueing can be external or internal in nature. External cues can be divided into auditory or visual cueing. Auditory cues in failure of gait therapy assists in improving walking speed; visual cues assist in improving stride length (Zhang et al., 2023). Examples of auditory cueing in failure of gait therapy can be when a PT verbalizes a direction to the ILwPD. Cueing can also be the use of a wearable clicking device set to a specific tempo which induces the individual to focus on a particular movement, such as initiating the postural movements for walking (Delval et al., 2014; Zhang et al., 2023). Visual cueing is exemplified in failure with gait therapy when an ILwPD uses a laser cane, wears smart glasses, or wears laser shoes that produce spatial prompts on the floor where the individual should aim their step (Zhang et al., 2023). External cueing in individuals with failure of gait have demonstrated improved gait kinematics, increased step preparation, decreased step speed, and improved control of step length compared to ILwPD who do not experience failure of gait (Delval et al., 2014; Ginis et al., 2018). Internal cues are self-directed cues that ILwPD utilize prior to initiating a task, such as focusing on a step or focusing on speaking more loudly. Weir-Mayta et al. (2017), conducted a study comparing internal and external cueing in ILwPD who experienced hypophonia. The research team captured ILwPD relying on internal cueing by recording their conversational speech when the participants responded to questions. The participants were unaware they were being recorded during this initial phase. In the next phase, external cueing was utilized when the researchers typed out the participants' spoken 12 sentences in the initial phase and asked them to read the sentences out loud off the paper. Individuals had significantly improved understandability and naturalness when utilizing the external cueing compared to internal cueing in conversational speech. Cueing has demonstrated a significantly positive impact on ILwPD. Therapies centered around increased vocal efforts have shown to be effective therapeutic tools (Arnold et al., 2014). Evidence Based Interventions LSVT-LOUD, SPEAK-OUT, and Lombard Devices Lee Silverman Voice therapy (LSVT)-LOUD is an effective behavioral speech language therapy for ILwPD. It was hypothesized that in ILwPD, the reduced vocal amplitude and speech intensity could be a result of weakened muscle movements and reduced neural innervation in the respiratory and laryngeal systems (Adams & Dykstra, 2008). LSVT-LOUD utilizes a three-step approach to therapy: 1. targeting voice amplification throughout the respiratory, laryngeal, and supralaryngeal subsystems, 2. intensive therapy with repetition encouraging the individual to work harder each time, and 3. re-calibrating the individual’s internal perception of normality of their loudness (Bryans et al., 2021; LSVT Global, n.d.). LSVT-LOUD is an intensive therapy where individuals participate four days per week for four weeks for approximately one hour per session with a trained SLP. Individuals are encouraged to utilize the therapy and continue practicing at home (Bryans et al., 2021). Sessions are split into two different components; the first half focuses on voice exercises while the second half focuses on external cueing to get the participant to speak louder (American Parkinson Disease Association [APDA], n.d.). Trials investigating individuals' response to the LSVT- LOUD have made it the gold standard in speech therapy for ILwPD with dysarthrias (Adams & 13 Dykstra, 2008). Trials have shown significant increase in sound vocal intensity, increased vowel pronunciation, increased intensity while reading a rainbow passage, and verbalizing monologues when compared to those who have not participated in behavioral speech therapy (Bryans et al., 2021; Muñoz-Vigueras et al., 2020; Pu et al., 2021; Richardson et al., 2022a; Yuan et al., 2020) and compared to Lombard devices (Richardson et al., 2022a). The rainbow passage is a standardized passage or reading that SLPs utilize to assess individuals because it contains all the vowels and phonemic elements of the English language (Dietsch et al., 2023; Lee & Bell, 2018). The Voice Handicap Index-30 is a questionnaire used to assess the psychosocial aspects of difficulty with speech by assessing the physical, emotional, and functional aspects of communication (Bryans et al., 2021). LSVT-LOUD demonstrated significant improvements in emotional status and functional performance, increasing participants' quality of life (QoL) (Bryans et al., 2021; Yuan et al., 2020). Individuals who complete the LSVT-LOUD training also benefit from enrolling in LOUD for LIFE. LOUD for LIFE is a daily internet-based session that incorporates exercises that encourage participants to continue to use their loud voice (LSVT for Life, n.d.) LSVT-LOUD is considered the gold standard in behavioral speech language therapies, but participants have criticized LSVT for being tedious and repetitive (Bryans et al., 2021; Yorkston, Baylor, & Britton, 2017). The intensive schedule is time consuming for ILwPD; there is a lack of insurance coverage for the therapy, and the waxing and waning health of ILwPD are barriers to individuals participating in LSVT-LOUD (Bryans et al., 2021). SPEAK-OUT is another speech therapy similar to LSVT-LOUD. In this therapy, participants engage in one-on-one sessions with a SLP. Differences between SPEAK-OUT and LSVT-LOUD include: 1. length of therapy which is 8 hours spread over twelve 40-minute sessions, 14 2. LOUD Crowd is a long term follow up program where participants can utilize daily exercises to maintain their trained behaviors, 3. the focus of therapy is on intentional speech versus loudness, and 4. participants receive a workbook for in-session training and home practice (Behrman et al., 2020; Parkinson Voice Project, n.d.). Individuals participating in SPEAK-OUT are instructed to speak with intent using an external cue to focus on overcoming deficits in sequential motor movements (Behrman et al., 2020). Fewer studies have been conducted on the efficacy of SPEAK-OUT, however, the studies conducted have demonstrated SPEAK-OUT increases speech intensity while reading a rainbow passage and during reciting a monologue (Behrman et al., 2020). Benefits of the therapy continue with participation in LOUD Crowd practice (Behrman et al., 2022). ILwPD are welcome to participate in both types of therapies. There does not appear to be any current studies comparing the two therapies to measure superiority in efficacy at this time; there is currently no evidence to suggest a cumulative effect on individuals participating in both therapies. In addition to behavioral speech therapies, SLPs can employ the help of voice amplifying devices called Lombard Devices (Adams et al., 2020). There have been a variety of devices developed that work differently to elicit higher voices in ILwPD. Some devices work by providing background noise in the individual's ear, causing them to speak more loudly to overcome the background noise; others directly amplify the user's voice (Adams et al., 2020). APRNs and SLPs can collaborate interprofessionally with ILwPD to select a behavioral speech therapy or device that works best for the indivdiual, as some therapies are more intensive than others. Evidence suggests that speech therapies improve the speaking abilities of ILwPD, however, there are also some limitations. The heterogeneity of studies, small sample sizes, measuring of different end points, some studies lacking a control group, lack of longitudinal 15 follow up, and performance bias from individuals knowing they were participating in a study are of concern (Behrman et al., 2020; Muñoz-Vigueras et al., 2020; Shin, Shivabasappa, & Koul, 2021; Yuan et al, 2020). In addition to these limitations, ILwPD still have difficulties accessing behavioral speech therapies, do not have the ability to participate in therapies due to their neurodegenerative condition, and struggle with implementation of the skills learned in therapy into their daily lives. Many ILwPD continue to live with hypophonia negatively impacting daily life, therefore increasing the risk for social isolation and decreased QoL (Bryans et al., 2021). Quality of Life Impact Speech impairment in PD is significantly associated with disability; 90% of ILwPD eventually develop speech impairment (Dashtipour et al., 2018). Speech impairments negatively impact the lives and relationships of ILwPD related to their impaired ability to communicate in social settings (Chu & Tan, 2019). The reduced speech intensity is impactful on the lives of ILwPD, causing them to become self-conscious or feeling ignored by others due to their speech leading to social withdrawal, isolation, depression, and a decline in their overall QoL (Chu & Tan, 2019; Office of the Surgeon General [OSG], 2023). Fatigue Fatigue is one of the most prevalent and crippling nonmotor symptoms associated with PD, with an estimated prevalence of 33 - 81% (Richardson et al., 2022b). Frequently ILwPD experience fatigue and loss of energy, especially in the evening (NINDS, 2023). Fatigue can result in low performance of activities and mental or physical strain (APDA, n.d.). Fatigue can also cause a movement disorder known as akinesia, which makes it difficult to carry out movement (APDA, n.d). Akinesia is the difficulty or inability to perform a conscious movement (Delval et al., 2014). In ILwPD, the cause of fatigue is unknown. Fatigue could occur from 16 motor symptom dysfunction like tremors and stiffness, or from non-motor symptoms such as hypophonia, depression, and extreme exhaustion (Parkinson’s Foundation, 2023). Social Engagement/Isolation Social engagement plays a crucial role in health-related behaviors, lifestyle choices, and treatment adherence, which significantly impacts health and life longevity (OSG, 2023). Social influence can positively affect a person's life through encouragement and motivation, whether directly from loved ones, or indirectly from social norms which help to improve health-related behaviors, such as treatment adherence (OSG, 2023). Social isolation and loneliness have been linked to a rapid rise in cognitive decline, negative health outcomes, and risk factors of morbidity and mortality (Prenger et al., 2020). This is particularly important in older adults due to their increased risk of developing dementia. Prenger et al. (2020) examined the changes and effects of social communication in PD and identified that negative social outcomes can be improved by increased education and awareness of changes improving the management of PD. Depression/Anxiety Depression and anxiety are often precipitated by social withdrawal in ILwPD who experience symptoms of speech impairment (OSG, 2023). Social isolation and loneliness are increased risk factors for developing depression and anxiety (OSG, 2023). Current research estimates that 40% of ILwPD will experience some form of depression or anxiety during their disease (Parkinson’s Foundation, 2023). Spiritual Distress Spirituality and religious influences have become more embedded in individuals' health and medical decision-making, therefore primary care providers (PCP) need to be aware of an individual’s preferences when living with complex chronic illnesses, such as PD (Prizer et al., 2020). The benefit to holistic care is that it includes treating the person, the mind, body, and 17 spirit. There is a growing body of research that suggests spirituality may lessen the negative impact of some of the motor (physical) and non-motor (including anxiety and depression) symptoms in ILwPD, which can improve QoL (Prizer et al., 2020). Quality Improvement Question Research demonstrates that the major concern with behavioral speech language therapy for ILwPD who have the symptom of hypophonia, is the brief effectiveness of the treatment and the failure to retain and maintain the speech intensity improvements beyond the clinic setting (Behrman et al., 2020). Transfer of treatment problem is the failure to maintain the skills used to increase voice volume gained by participating in behavioral speech therapy when ILwPD are outside the clinical setting, or after completion of the therapy (Adams & Dykstra, 2008; Zhang et al., 2023). Understanding exactly what the challenges are with transfer of treatment adherence, beyond the clinical setting, can be better understood from the lived experience of ILwPD who have completed behavioral speech language therapy. Identifying the transfer of treatment gaps may help improve the continued use of practicing behavioral speech therapy techniques, such as speaking with intent at home or in social settings. This QI project was conducted using the project question “What are the barriers and facilitators related to the generalization of learned speech therapy strategies into daily communication?” Transfer of Treatment Problem The largest concern documented by SLPs for ILwPD after participating in LSVT-LOUD therapy was transfer of treatment issues (Adams & Dykstra, 2008). There is a gap in the research investigating ILwPD perceptions of the challenges and successes of using the speech therapy techniques in daily communication. Additionally, there is a gap exploring the lived experience of ILwPD whose social determinants of health (SDoH) impact the resources provided to manage PD. Studies have identified possible themes for the transfer of treatment problem such as the 18 removal of cueing from the clinical setting, physical effects, and emotional impact (Ginis et al., 2018; Spurgeon, Clarke, & Sackley, 2015). ILwPD who participate in therapy respond well while participating because they are being engaged with external cues by the SLP. Once the behavioral speech therapy ends, the participant is forced to rely on internal cueing. The transition away from receiving external cueing in the clinical environment leads to the ILwPD to stop working on the skill obtained during therapy, leading to failure to transition the skills into daily life. Research demonstrates that ILwPD perform better doing tasks with visual cueing compared to auditory cueing (Ginis et al., 2018). Richardson et al. (2022b) conducted a study comparing LSVT-LOUD to a Lombard device called SpeechVive. Researchers noted that individuals who participated in LSVT-LOUD reported significantly more exertion and fatigue compared to the use of SpeechVive. The authors measured fatigue with the Fatigue Severity Scale and Fatigue Impact Scale. The Fatigue Severity Scale is a standardized scale assessing areas of mental, physical, and social fatigue where higher scores correlate to increased fatigue in an individual (Martinez-Martin et al., 2017). The Fatigue Impact Scale is a more extensive scale utilized to assess the impact of fatigue on physical, mental, and social aspects of life (Schiehser et al., 2013). Individuals who participated in LSVT- LOUD ended with a lower respiratory volume that required more expiratory muscle use and increased work of breathing (Richardson et al., 2022b). The researchers noted this could limit the therapeutic adherence to LSVT-LOUD therapy. This study corresponds with the additional studies hinting that fatigue could be a plausible cause for ILwPD not continuing to utilize LSVT- LOUD skills at home (Spurgeon, Clarke, & Sackley, 2015). Research has demonstrated that emotions contribute to the transfer of treatment. Participants have criticized LSVT-LOUD because they were unable to link the exercises to 19 relevant events in their life and were not motivated to work on the skills outside of the clinical setting (Bryans et al., 2021; Yorkston, Baylor, & Britton, 2017). Participants found it difficult to emotionally connect with the therapy if caregivers or families were not included, or if family members did not encourage the individual to practice LSVT-LOUD skills at home (Yorkston, Baylor, & Britton, 2017). Studies discuss that after participating in LSVT-LOUD, ILwPD stopped practicing at home due to increased anxiety and depression related to unmet expectations of the therapies (Spurgeon, Clarke, & Sackley, 2015). Participants envisioned that after LSVT- LOUD their speech would be significantly improved, however, the individuals continued to have difficulty speaking in crowded places or speaking while doing tasks. Social Determinants of Health The environment a person is born into, lives, grows, attends school, or works, are all factors that impact SDoH (see Figure 2). These conditions are often the catalyst for increased risk factors for inequities in health outcomes and QoL (Towfighi et al., 2023). Siddiqi and Koemeter-Cox (2021) discuss that the Michael J Foxx Foundation (MJFF) initiated a call to action to address the gap in PD research that exists particularly in racial and ethnic disparities in diagnosis, treatment, and research participation in people of color. There is a current lack of diversity and inclusion in the research conducted with ILwPD in clinical trials; only 8% of participants are non-white minorities (Siddiqi & Koemeter-Cox, 2021). In 2021, the MJFF published an opinion article to address the need for inclusive research practices and announced a plan of action to promote diversity, equality, and inclusion (DEI) in PD research and care (Siddiqi & Koemeter-Cox, 2021). The MJFF research revealed four major areas of action in their plan to commit to reducing inequalities in PD. These major areas of actions are: 1. Identifying barriers and solutions to research participation 2. Funding inclusive research with greater participant diversity 20 3. Building a clinician/researcher workforce committed to health equity 4. Supporting a more holistic understanding of PD (Siddiqi & Koemeter-Cox, 2021) The foundation identified five strategies to specifically focus on reducing inequities which are engagement, recruitment, retention, representation within staff, and partnerships with community organizations. Current research fails to properly address the anticipation of developing any social issues in ILwPD. For family and caregivers, education on the disease process could help individuals prepare and plan prior to social symptoms occurring, and adequately re-evaluating social needs as the disease progresses (Prenger et al., 2020). A multidisciplinary team approach is the most appropriate plan of care for ILwPD due to the progressive nature of the disease; collaboration is key to improving QoL in ILwPD (Moya-Galé et al., 2019). Conceptual frameworks are utilized in (QI) projects to ensure information is obtained and presented in an organized manner and to reduce gaps in knowledge. Figure 2 Social Determinants of Health Figure from a US government public domain diagram by the U.S. Department of Health and Human Services available at https://health.gov/healthypeople/priority-areas/social-determinants-health 21 Lewin’s Change Theory Conceptual Framework Lewin’s Change Theory involves three phases: unfreezing, changing, and refreezing (Bassitt, 2023) [see Figure 3]. The unfreezing phase involves identifying previous policies, procedures, and gaps in current knowledge. In this project, unfreezing included a literature review to identify possible gaps in the literature, barriers, and facilitators to the transfer of treatment problem, and the formulation of interview questions. The change phase of the QI project included interviewing ILwPD on their lived experiences and perspectives regarding their experience with speech language therapies, transcribing the interviews, analyzing the transcriptions, and identifying themes. The refreezing phase involved identifying themes to expand the knowledge of SLP and APRNs on the lived experience of ILwPD, increase APRNs knowledge of the factors that facilitate or hinder ILwPD QoL, and expand APRNs knowledge on resources and treatments for ILwPD, such as SLPs specially trained in LSVT-LOUD or SPEAK OUT! Figure 3 Lewin’s Three Phase Model of Change 22 PDSA Cycle Model The Plan, Do, Study, Act (PDSA) is a tool that was developed to help test a change process (Institute for Healthcare Improvement [IHI], 2023). The PDSA cycle model has four phases (see Figure 4). The Plan phase included developing interview questions from literature to examine the barriers and facilitators to utilizing speech language therapies at home. The Do phase included conducting interviews with ILwPD who were recruited from various PD organizations, foundations, and support groups to discuss their perspective on barriers and facilitators to incorporating speech language therapies in their daily lives. The Study phase included transcribing the interviews conducted with ILwPD, analyzing the transcriptions, and identifying themes. The Act phase included providing the themes identified from the transcribed interviews to increase the knowledge of the lived experience of ILwPD who participated in behavioral speech language therapies. This step also included increasing the knowledge of APRNs on the pathophysiology of PD, availability of behavioral speech language therapies, and knowledge of community resources for referral to assist in improving the QoL of ILwPD. 23 Do: Conduct interviews with ILwPD Figure 4 Plan Do Study Act Cycle Act: Increasing the knowledge of APRNs & SLPs on lived experience of ILwPD Plan: Literature review, Develop interview questions Study: Transcribing interviews, Analyzing transcriptions, Identifying themes Methods Recruitment Considerations SLPs provide a vital service to ILwPD with hypophonia. SLPs have knowledge and experience in using amplification devices and/or behavioral speech therapy treatments which improve communication, articulation, and intonation. The community partner for this project is an SLP who is faculty at Michigan State University and runs an SLP lab on campus (Appendix B). The community partner had communicated in the past with organizers of PD support groups and PD foundation and supplied names and contact information to the QI team. The team contacted the groups and organizations via email with an IRB approved recruitment letter 24 (Appendix C) requesting dissemination of a recruitment flyer (Appendix D) to the organizations’ listserv. A group meeting was attended in person to assist with recruitment. ILwPD were asked to participate in this project from the following organizations: Michigan Parkinson Foundation, Lansing Area PD support group, Livingston County PD support group, Brighton Adaptive Exercise Support Group, and Wayne County Downriver/Allen Park PD support group. Potential participants responded to the flyer via email or phone call with interest to be included in the project. Those responding to the recruitment phase were screened for inclusion criteria via telephone screening with an IRB approved script (Appendix E). If the ILwPD met inclusion criteria, they were emailed a Qualtrics survey (Appendix F) to obtain basic demographic information and scheduled for a Zoom© interview. If individuals did not meet inclusion criteria, they were asked simple demographic and motivational questions to collect secondary data. This was done related to the eager desire of ILwPD to share their story and experiences with the team. The team wanted to acknowledge their altruism. Eligibility Criteria The specifications that ILwPD had to meet to participate in this study are referred to as the eligibility criteria. These specifications are to ensure that participants are similar in certain characteristics, symptoms, and past treatments (Toolkit, 2020). Eligibility criteria is divided into two categories referred to as inclusion and exclusion criteria, which outlines the deciding factors to whether a participant will be included in the project or not (Toolkit, 2020). The inclusion criteria were as follows: 1. Diagnosis of idiopathic PD for at least one year, 2. Age: onset greater than or equal to 50 years old, 3. Experienced vocal changes or voice symptoms, 4. Have participated in behavioral speech language therapy for hypophonia, 5. Able to speak, read, and understand English, and 6. Have access to a computer or phone with Zoom© meeting capabilities. 25 ILwPD were excluded from participating in the study if they received speech therapy for language, cognition or swallowing symptoms not related to PD. Survey Question Development Survey questions were developed with the intended purpose to obtain the lived experience of ILwPD (Appendix G). Questions were open-ended in nature attempting to elicit a broad response from participants. The questions attempted to stimulate responses covering topics related to changes in life since PD diagnosis, resources made available to the ILwPD, experience with behavioral speech therapies, barriers and facilitators to transfer of learned skills to daily life, and additional advice for future ILwPD planning to participate in behavioral speech therapies. The final categories included: The Grand Tour question, speech/voice change experiences, speech therapy experiences, final question, and opportunity for more detail. The interview questions were developed with input from the community partner. Interview Process Setup The participants were sent a link for a Zoom© meeting for the interview which had a specific date and time mutually predetermined by the participants and the interviewers. Once the individual entered the Zoom© meeting room, the connection was tested for stability and audio was checked to ensure the participant and the interviewer could both be heard. Participation information was provided to the participant, and verbal consent was obtained to record and participate in the QI project. After consent was obtained, if the participant’s characteristics were not previously obtained through the Qualtrics survey, they were obtained at this time. The interview was started by asking the IRB approved questions and all interviews were recorded to 26 assist with transcription. The target interview allotted time was 30 minutes, however, participants were allowed up to 45 minutes to complete the interview. Project Site and Population This QI project took place via Zoom© in a Midwest academic environment. The surveys were administered to participants virtually. Ethical Considerations/Protection of Human Subjects The IRB non-research status was obtained prior to initiating the QI project (Appendix H). Participants remained anonymous at all phases of the QI project. No names were collected throughout the project. Interviews were conducted in a virtual format to reduce the time burden on participants. Goals, Objectives, and Expected Outcomes The overall goal of this QI project was to interview ILwPD who had behavioral speech therapy for symptoms consistent with hypophonia to determine effective facilitators and barriers to the transition of treatment from the clinical setting into daily life. The analysis of the information will be used to aid APRNs in the management of hypophonia in ILwPD pre/post behavioral speech therapies. The information will be useful for APRNs in all facets of care for ILwPD from referring this population to specialists, PT, OT, and SLPs, to coordinating the care of ILwPD based on their spiritual and SDoH needs, and the experience and needs of family members and/or caregivers. The expected outcome was that the information obtained would aid in filling the gap in the research for the transfer of treatment barriers in ILwPD based on learning their lived experiences, and ultimately leading to improvement in their QoL. The understanding of the lived experiences of ILwPD will aid to improve communication abilities in social settings, decrease social withdrawal related to voice changes, reduce depression, and increase social connection. 27 Recruitment and Interviews Discussion The recruitment email was sent out to four PD support/exercise groups leaders, a local neurologist with expertise in PD, and the Michigan Parkinson’s Foundation. The group leaders were asked to send out the recruitment flyer to their member listserv, and the QI team offered to attend the group meetings to discuss the project. The QI team were invited to 2 of the groups’ monthly meetings and did not receive return communication from 2 groups. The team attended the Lansing Area PD support group but were unable to attend the second PD support group meeting. The Lansing Area PD support group listserv included 208 members; the QI team attended the January meeting which had 20 members in attendance (typical attendance is 30-45 individuals). One individual from this group met the inclusion criteria and was interviewed for the QI project. Two individuals from this group did not meet the inclusion criteria, but supplemental data was collected from these individuals. The QI team was invited to attend the February meeting of the Livingston County PD support group, however due to time constraints of the recruitment deadline and schedule conflicts, the QI team was not able to attend the meeting. The group leader agreed to send the recruitment flyer to the listserv of 46 members. One individual from this group met the inclusion criteria and was interviewed for the project. No additional individuals were identified to collect secondary data. The QI team had correspondence via email and telephone conversations with the leadership team of the Michigan Parkinson’s Foundation. The foundation leadership team agreed to distribute the team’s recruitment flyer via newsletter. The newsletter was distributed during the foundation’s spring quarterly period which was sent in the month of March. The recruitment material was distributed via mail to 11,900 members. Five individuals responded to the 28 recruitment material, and two individuals were identified for the QI. One individual was identified to collect secondary data. Three individuals did not return the calls or emails of the QI team. The QI team corresponded with a local neurologist who had previous correspondence with the community partner, who’s practice specialty included working with ILwPD. The physician was agreeable to reviewing the recruitment information and discussing possible recruitment leads with the team. Analysis and Theme Identification See Table 1 for the demographic data collected for individuals who met the inclusion criteria. See Table 2 for the demographic data collected for individuals providing secondary data. Table 1 Qualtrics Demographic Survey Results: Characteristics Question Selected Choice What is your current age? 50 to 64 years of age 65 to 84 years of age What is your sex? Male Female n (%) (1) 25% (3) 75% (2) 50% (2) 50% Which phrase or word below is the one that best describes yourself? Straight or heterosexual (4) 100% What is your ethnicity? Are you a veteran? What is your highest level of education obtained? Which of the following describes your personal relationship? White No Associate degree Bachelor’s degree Master’s degree Married (4) 100% (4) 100% (1) 25% (1) 25% (2) 50% (4) 100% Question Selected Choice Who do you currently live with? (Mark all that apply) Spouse Children What is your current living environment? How many years ago were you diagnosed with Parkinson’s disease? How many years ago did you notice your voice changing? How long has it been since you participated in a behavioral speech therapy program? Have you participated in any of the following behavioral speech therapy programs? Single house Condo Senior housing 1 to 2 years 3 to 5 years 6 to 8 years 9 years or more 1 to 2 years 3 to 5 years 6 to 8 years 0 to 1 years 4 to 5 years Do not recall LSVT LOUD SPEAK OUT! 29 n (%) (4) 100% (1) 25% (2) 50% (1) 25% (1) 25% (1) 25% (1) 25% (1) 25% (1) 25% (2) 50% (1) 25% (1) 25% (2) 50% (1) 25% (1) 25% (2) 50% (2) 50% 30 Table 2 Demographic Data for Secondary Data Collection Participants Demographic Characteristics Selected Choice n (%) What is your current age? 65 to 84 years of age (3) 100% What is your sex? Male Female (1) 33% (2) 66% Which phrase or word below is the one that best describes yourself? Straight or heterosexual (3) 100% What is your ethnicity? White (3) 100% What is your highest level of education obtained? Some college (community or 4 year) Bachelor’s degree Master’s degree Which of the following describes your personal relationship? Who do you currently live with? (Mark all that apply) What is your current living environment? How many years ago were you diagnosed with Parkinson’s disease? Single Married Widowed Alone Spouse Single house Condo 3 to 5 years 6 to 8 years 9 years or more (1) 33% (1) 33% (1) 33% (1) 33% (1) 33% (1) 33% (2) 66% (1) 33% (2) 66% (1) 33% (1) 33% (1) 33% (1) 33% 31 Themes from QI Participants Participants were interviewed via Zoom© for the QI project. The interviews were video recorded with verbal consent of the participants, and the team transcribed the interviews after completion. The QI team consisted of two doctoral nursing students. The QI team reviewed the transcripts of the participants and collaboratively identified four themes pertaining to the lived experiences of the participants. The themes identified were loss and judgment, self-awareness, resiliency, and encouragement. Reviewing the lived experiences of the ILwPD, the participants detailed the barriers of living with the progressing symptomatology of PD in which the themes of loss and judgment were noted. Participants discussed the impact of difficulty with communication with the loss of the ability to maintain employment, the loss of and judgment of interactions with family members, feelings of isolation when in social situations, and judgment from healthcare professionals. Occupations bring a sense of purpose and gratification to individuals. As hypophonia progressed participants, discussed they were unable to maintain the voice volume needed to continue working. Participant #1: “I had a big classroom, with 36 computers and students, it was quite noisy, making it challenging to control the classroom, and give a lesson without students saying, “we can’t hear you.” Participant #2: “I felt Parkinson’s disease symptoms made it difficult to do my job at the level I was accustomed to, and I felt it was time to step down… I didn’t feel that I would be able to get in front of people to do what I promised to do and be comfortable as it relates to speaking in front of new clients.” The inability to properly communicate due to hypophonia created a sense of loss as the participants were forced to step down from their positions. Hypophonia led them into an untimely shift into a new stage into their lives. 32 The diagnosis of a chronic, progressive disease can spark a multitude of emotions. Emotions can be difficult for not just the individual diagnosed with PD to process but can be difficult for loved ones and caregivers. Participants in the project expressed that a diagnosis of PD and difficulties with communication created stress on relationships with loved ones due to feelings of judgment and loss of identity. Participant # 1: “Family members get impatient because they think that I am not talking.” Participant #3: “It aggravates my wife a lot. But most people don’t say anything other than what did you say? That sorta thing but that is the biggest challenge, I guess.” … “My wife. She is always saying speak up, I can’t hear you. And she gets mad at me, and I try to speak louder.” Participant #4: “Example, my husband would say, "Why are you speaking so soft, I can’t hear you?” He is hard of hearing and wears hearing aids, so I begin to yell, then I feel bad and cry. I was the person of the family for everyone who took care of everything.” “It’s hard for them to see who I am now versus who I used to be. I believe they [family] are in denial; they don’t know what to say and don’t want to say the wrong thing. They believe that because I’ve always been the strong one that I won’t allow them to help me. But I have learned to ask for help and to accept help as well. Being a very independent woman it is hard to acknowledge needing help, but I have humbled myself.” “I have a lot of wonderful supportive friends, but a few have drifted away. Like my gardening group, I can’t do the things that I used to do gardening, going for long walks.” The feelings of loss or lack of support can impact QoL for ILwPD. The literature reveals that as QoL decreases, individuals have an increased risk of social isolation. Participants echoed the literature as their difficulties with communication led to loss of confidence in participating in social events. 33 Participants #2: “I withdrew a little because I don’t want to engage fully like I normally would.” Participant #4: “It’s the same thing with your voice, it’s big and loud then it becomes softer and softer and softer until you withdraw or curl up in a ball.” “Give people the space and time to speak because it takes a lot to think about what you’re going to say and how to project your voice properly. I wish people would be more patient.” The APRN needs to be aware of the emotions surrounding the diagnosis of PD and understand the factors that could contribute to a decrease in QoL or social isolation. The APRN additionally needs to be aware of the feelings of judgment individuals with chronic disease feel when interacting with their healthcare professionals. Participant #1: “I have felt that a couple of professionals did not know what Parkinson’s disease was and how it makes you feel. They did not listen to me; I recall one professional got frustrated with me.” Participant #3: “Seems sometimes that they give up. They say, oh, you have Parkinson’s disease. At times when I didn’t have Parkinson’s disease, you know they would say you are getting older. Yeah, I didn’t have to go to medical school for 12 years to figure that out. But anyway, you have Parkinson’s disease, yeah I know but could be something other than Parkinson’s disease, right? So anyways that is one of my biggest critiques.” Participant #4: “It’s like you see so many doctors, and everyone just wants to treat their little part and as a result I ended up on so many medications. It got to a point where I had just fallen apart, I was so sick.” … “As wonderful as the medication is, it lasts only 4 hours, and it doesn’t absorb protein well, so I’m having a lot of digestion issues. The senior living community of course serves high protein meals. My provider said you can take some Prilosec, but I don’t want to fix it by taking a pill. So, now I’m looking for a dietician.” APRNs play a pivotal role in the management of chronic diseases and should want to contribute in a positive manner. APRNs need to know the importance of being understanding and cognizant of the vernacular, posture, and voice which could convey judgment and could exacerbate an 34 individual’s own negative feelings. APRNs should be diligent to be non-punitive when individuals are struggling with progression of symptoms related to chronic illness. Participant #3: “Well, when I remember I am talking to someone, and they ask me again to repeat then I think, hey, I better speak louder. Then I try to speak louder. I guess I realize it is my own fault.” The feelings of quilt, judgment, or fear of needing to repeat a statement or question could be isolative for an individual experiencing hypophonia, APRNs should foster environments of openness and kindness. Self-awareness is important for individuals who experience chronic diseases. The participants discussed the importance of self-awareness when they noticed difficulty with communicating. Participant #2: “For the longest time, I didn’t tell anyone. I hid it for a while, and I realized with time, I had to be who I was, no barriers.” Participants detailed how being introspective played a role in identifying their strengths and weaknesses regarding communication. They also noted barriers and facilitators to practicing behavioral speech therapy skills, and the acceptance that they would need more help with everyday activities. Participant #2 “In situations with friends and family who know my situation I try to be honest and normal. In situations with others who I don’t know, the strategy is that I speak a little less, maybe 10% less.” Participant #3: “You know, when you are in a situation, and you are familiar with the people you are more relaxed. And I don’t speak as loud, and then you are somewhere you just met somebody, and you have to make sure that they heard you, or that they hear you, it is different. It’s the situation you are in that makes it a little bit different of how you are going to talk or speak.” 35 Participant #4: “Being aware that when I speak that I need to speak well. I need to try and enunciate and speak up because it’s easy for me to withdraw, so you must be aware not to do that.” “In crowds I find it difficult to be in due to [the] variation of loudness and I get performance anxiety. I still attend gatherings and force myself to engage and interact with others.” Self-awareness during social settings demonstrates the incentive to focus on the skills learned in behavioral speech therapy in order to not be forced into isolation. Additionally, being self-aware allowed participants to pinpoint which aspects of communication were most difficult. Participant #2: “I noticed the changes initially on the right side of my mouth and with my tongue. Particularly when speaking certain words, I had to force out the articulation of them. That slowed down my pace of speech.” Participant #3: “My biggest thing is breath support and I have trouble breathing. I think that is my biggest problem because I don’t have enough air to force the words out, or not send them out very strong.” Knowing the aspects of speech that are most difficult for each ILwPD can be assistive in targeting the type of therapy. Participants mentioned in addition to utilizing general speech therapy activities, many were provided with incentive spirometers and similar devices to help with breath support. Self-awareness helps identify barriers and facilitators to participants utilizing the skills learned during behavioral speech therapy and the importance of practicing the skills at home. Participant #1: “It is easy to forget to do exercises after leave therapy, life gets in the way.” “Tiredness, I am not feeling it. I don’t want to get up and do it. It wasn’t depression, it was just frustration.” Participant #3: “Then they have bonus reading and then you read again. Supposedly you should, but I don’t really, and I started to, but I didn’t continue, is to read out aloud for a few minutes a day.” 36 Participant #4: “I want to keep my ability to speak, and it’s easy to just stop but then you realize how important communication is once you’re at risk for losing it slowly.” Some of the barriers discussed by participants echo the research that ILwPD who experience hypophonia do not practice the skills learned due to fatigue, not understanding how the exercise is applicable, and not prioritizing the exercises once the driving force of speech therapy is finished. Individuals experiencing the chronicity of PD, and the progressive spectrum of symptoms, require introspective evaluation of the amount of assistance needed to complete everyday activities of daily living (ADLs). APRNs should be aware that asking for more assistance could be difficult for ILwPD, but increased assistance may be necessary, especially for those experiencing difficulties with voice. The assistance could be as miniscule as ordering off a menu, Participant #1: “I don’t do much of it, we will decide what I want to have. My husband does a lot of the ordering. I can order, but he is gentlemanly.” Getting more assistance could require drastic changes to lifestyle. Participant #4: “My husband and I moved into a senior living community because I have always been the leader of the band in my family, and when I was no longer able to do all the things required in our home, we moved here where someone else is cooking the food, doing most of the cleaning, etc.” APRNs may need to help facilitate conversations related to the need to move with ILwPD, family members, or carers. APRNs also need to be aware of the difficulties individuals may have asking for help. Providers should be receptive to ILwPD who present looking for help and be knowledgeable local and national resources. Living with chronic, progressive disease, especially a disease without a known cure, challenges the fortitude of the individual. Through interviewing the participants, the QI team was 37 impressed by the participants’ resiliency. This led to the identification of resiliency as a theme. The definition of resiliency in chronic illness is not well defined, but it has been postulated by nursing scholars and research that resiliency comprises an individual’s ability to adapt, recover, and return to everyday living in difficult situations (Jin et al., 2022). Some participants showed resilience by advocating for answers when faced with worsening symptoms. Participant #1: “I was being treated by a Rheumatologist for 5 years, who said she could no longer help me anymore. She sent me back to my primary care physician who sent me to a neurologist, but I looked online at an article and I had 7 out of the first 10 symptoms of Parkinson’s disease.” Participant #3: “He sent me to a neurologist and at the neurologist there is no actual test for Parkinson’s disease, so they do a clinical evaluation. He said, “yes, I think you have Parkinson’s disease, very mild.” I didn’t believe him, so I went online and found the Michigan Parkinson’s Foundation which is really outstanding. They had a number of doctors there that they recommended, and I picked one and I was lucky I picked the best one.” Participant #4: “Then one day visiting my daughter-in-law in Texas, she said have you seen a neurologist, which I hadn’t. However, when I did see the neurologist, he said you have Parkinson’s… So, he took me off all those medications that I was on and started me on carbidopa-levodopa. It was life changing. I wasn’t even walking, so I ditched the walker, cane, and I was able to sleep. The world was all of a sudden, beautiful for me again.” “Do it! I was listening to a talk on YouTube and the lady said that you don’t have to wait until you have the problem to do it. Just start learning about the disease, how it will affect your vocal cord folds, and get to know that part of your body. As a nurse I could tell you everything about how the body and how things work, but I knew very little about speech and vocal cord folds. So, look at a picture of your vocal cords, to understand how they work… Watch all the YouTube videos, and don’t be afraid to ask questions, be open and there’s a lot of answers out there.” When facing a difficult diagnosis, the participants demonstrated the resilience to ensure they were getting the best care for themselves. Participants found the best care for themselves 38 included participating in speech therapy. However, participants had to demonstrate resiliency in motivating themselves to maintain the behavioral speech therapy skills. Participant #1: “It’s not too bad, not too hard to practice, but it must have eventually worn off because I am back to my low voice again. I probably dropped because I have to continually work on the muscles and the voice sounds. So, I am working on that again.” Participant #2: “At home, I have a daughter who is 18 years of age, who really needs me to be fully engaged and I feel I hold back sometimes, so I am working on mindfulness.” Participant #3: “Well the only difficulty I have is people saying what did you say. And not talking loud enough. And you really have to speak with intent to think about speaking louder because I am speaking real loud, and I am not, I guess to other people.” Participant #4: “I want to keep my ability to speak and it’s so easy to just stop, but then you realize how important communication is once you’re at risk of losing it slowly.” … “I have never liked to sing, and initially I felt so silly singing, so I would sing in the shower and I now realize how much that helps my voice by exercising my vocal cord folds.” Although the motivation for participants was different, participants had a unified goal to maintain voice volume and personal relationships. The APRN can be encouraging to help the ILwPD in finding the “why?” or motivation to be resilient and understand that in PD perseverance can be difficult. Participant #1: “It’s a little harder to come up with the positive things.” Resilience is important because practice is vital to maintaining skills and a fruitful QoL. Participant #3: “You are not going to get better, but to keep it away or at bay.” The difficulty in maintaining resiliency leads to the last theme the QI team identified. ILwPD discussed the need to be resilient while living with PD, and participants voiced the importance of and the role encouragement in living with PD. Experiencing PD and having difficulty with communication can lead to isolation. 39 Participant #4: “There are a few people here with Parkinson’s disease, who I feel like to isolate themselves, because they don’t know how to interact with people. I can see how when you start to lose some of your social ability, you can just curl up.” Encouragement from the ILwPD’s community can be very influential on QoL. Each participant had a slightly different definition of their community. Some included their SLP, support group, speech therapy group, senior living community, family members, or spouse. All participants endorsed value in the encouragement they received. Participant # 1: “Laura, my speech language therapist, was my motivation to do exercises at home. If I didn’t do them, she would holler at me. She is my favorite therapist.” … “He’s always saying c’mon grandma! He’s always saying stand up grandma because when I don’t do them, I get bad perception… “The kids are always saying you gotta work to get better grandma.” Participant #2: “My daughter who is 18, thinks it’s funny when I’m practicing making certain sounds, or singing in the shower. My wife works in healthcare and her dad has had 4 strokes, so her family is more supportive, it’s light and not having to feel bad or judged.” “I would say think of these groups as one universal force going into the same direction: you look different but all going into the same direction.” Participant #3: “My wife will notice when my voice is getting really bad, and she will tell me you need to practice.” … “Everybody encourages me to get better in my family. Exercise, physical exercise, go to the gym, walk, ride a bike, treadmill, all those things. Box City boxing, but as far as speech, they just encourage me in general to do everything I need to do in general.” Participant #4: “Moving to the senior living community, there’s a few people here with PD and other illnesses. But we all understand that we are here because we are all broken in some way or have broken pieces. We encourage each other here at the senior living community.” Chronic illness has a significant negative connotation. However, for individuals experiencing chronic illness, community and carers can significantly impact the negativity. The APRN needs to create an environment of encouragement. The APRN may also need to “check 40 in” with the carers of the ILwPD and may need to advocate for carer respite time to prevent burn-out to maintain encouraging behavior. Carers and families are pivotal in the QoL of the ILwPD. The APRN needs to be sensitive to the needs of the care team beyond prescribing medications and referring to therapies. Participant #4: “There must be some ways providers can work together and look at the whole picture of a person with Parkinson’s disease and help them connect with the right people and specialist.” The APRN can lean on the nursing model to remember an individual is not just the illness they are experiencing, but a person who needs encouragement, community, and support. The APRN should incorporate these values into their approach to person-centered care. Secondary Data Theme Three participants did not meet inclusion criteria but were interviewed via telephone call for secondary data. The telephone conversation was transcribed for review and identification of possible themes. The QI team of two doctoral nursing students identified the theme of altruism in building a supportive community. Individuals sought participation in this QI project because they felt an obligation to help others experiencing PD to feel more supported. Participant A: “I want to volunteer for any research related to Parkinson’s disease, however I don’t often meet the criteria. So, I participate in singing in the choir, attending the Parkinson’s disease support group, and exercise.” Participant B: “I might be able to help someone. I could make someone feel comfortable.” Helping others is a strong motivational force for ILwPD, and helping others builds supportive communities. For individuals with chronic illness, having a supportive community provides a sense of security. 41 Participant C: “My cousin notified me of this project. He has Parkinson’s disease, too. We talk back and forth about medications, immunizations, treatments, etc. I find it helpful to have someone to go through it with.” When the QI team attended the local support group meeting, the team was able to see the value of altruism in building a supportive community and camaraderie supporting other individuals. The APRN can help ILwPD by learning the community resources and sharing the resources with the ILwPD. Participant C: “Some individuals are getting worse. But we bounce things off each other. You have to remain as social as possible, even if you don’t want to.” Barriers The QI team identified multiple barriers to recruiting individuals for the QI project (see Box 2). The recruitment flyers were emailed out to groups and Zoom© interviews were conducted via computer or phone. The team identified technology access and technology literacy as a barrier to recruitment. The team paid close attention to ensure all materials were made with an appropriate reading level for health literacy for those intended to receive the documents. If individuals had difficulty with responding to the Qualtrics survey prior to being interviewed, the team allotted time prior to the interview to ask and record the demographic information. If individuals had difficulty with operating Zoom© programming for the interview to be conducted, the team provided a call-in number to the Zoom© teleconference meeting in lieu of video conferencing. Box 2 Barriers to Recruitment of Participants 42 Barriers Technology literacy Difficulty related to weather Corresponding with professional contacts Release date of newsletter Little control in recruitment Recruitment occurred in a Midwest academic environment during winter months where snowstorms, icy conditions, and below freezing temperatures impacted the attendance of support and exercise group meetings due to risk of falls and hypothermia. The decrease in attendance limited the number of individuals who received the opportunity to be recruited and ask questions about the project in person. Additionally, these winter months in the Midwest environment traditionally are when individuals travel to warmer areas to avoid adverse weather conditions, which may have decreased the group’s attendance. Correspondence with the Michigan Parkinson’s Foundation occurred between the Chief Executive Officer (CEO) who was identified by the community partner as the contact person. The QI team identified this as a barrier because the CEO had other obligations which made corresponding difficult and leading to long periods of waiting between correspondence. The CEO did provide an additional contact in the organization to correspond with regarding integration of the team’s recruitment material in the newsletter. The second contact was difficult to reach via email or telephone which prevented the QI team from receiving up to date information on the distribution of newsletter. The newsletter was identified as a barrier, as the 43 team learned the newsletter was distributed quarterly. The team missed the winter quarterly release date and had to wait for the spring release date. The spring release date was too close to the identified recruitment deadline for the QI project. Individuals who were interested in participating in the QI project reached out to the team after the end of recruitment, and the QI team agreed to extend recruitment for an additional week to obtain more lived experiences. Control in recruiting individuals, paired with limited coordination with the community partner and local PD support groups, created a barrier for the project. The community partner provided the team with a short list of local groups and contacts to recruit individuals for this project. The community partner additionally provided contacts for various social media groups and groups located in a different geographic area. The team collectively agreed to focus recruitment efforts on individuals in the local area and to avoid recruitment through social media groups. Throughout the process of recruitment, the team realized that the contacts provided by the community partner provided very few individuals to be recruited, leading to the need to cast a wider net. The QI team expanded correspondence with additional PD support/exercise groups within the same state. The team utilized a list of PD support/exercise/music groups compiled on the Michigan Parkinson’s Foundation website to further the search for individuals for recruitment to the QI project. The team found when corresponding with these additional group leaders, that each group leader had specific and preferred ways to disseminate information to the individuals in their groups. Though the QI team offered alternatives to assist with the distribution of the recruitment information, the leaders were not receptive to alternatives which led to missed opportunities to present the project to the individuals sooner in the recruitment cycle. As the QI team worked through barriers, opportunities for improvement were discovered for individuals hoping to continue or recreate the QI project in the future. 44 Opportunities for Future Projects This QI project did not occur in a linear manner, which required some steps of the project to be re-evaluated and revised. Through revision of steps in this project, the QI team identified areas of opportunity for improvement in the current project, or future renditions of this project (see Box 3). In the initial recruitment phase, individuals contacted the QI team who did not meet inclusion criteria but were eager to participate in the project. The QI team discussed that these individuals’ lived experiences brought value and enriched the project; not obtaining these experiences would be a missed opportunity. In addition to the interview questions which met the primary objective of this project, secondary interview questions were drafted for those interested in the project but did not meet inclusion criteria to supplement the project. Box 3 Opportunities for Improvement Opportunities for Improvement Importance of collecting secondary data Altruism Building connections Better introduction to support groups prior to recruitment Better coordination with the community partner for recruiting Being flexible Through discussion of the intentions of the individuals who reached out who did not meet the inclusion criteria, altruism of older individuals was discovered as an opportunity for improvement. The individuals who reached out to participate, knowing they did not meet the inclusion criteria, felt compelled to be altruistic. ILwPD understand there is no cure for PD, so 45 they wanted to share their experiences to help healthcare providers (HCP) and researchers to provide insight and knowledge into PD, so HCPs can treat PD more effectively. Recruitment of individuals for the project was identified as a barrier to this project, however some opportunities were brainstormed to improve this process. Lack of connection with local and regional PD groups created difficulty in recruitment. The QI project took place over three academic semesters, and recruitment for the project was started at the end of the second semester. An opportunity to improve the connection and communication with PD support groups would be to contact or attend local meetings prior to the recruitment phase. This would allow the opportunity for better connectivity and familiarity when the QI team started the recruitment phase. An opportunity for improvement identified with recruitment would be more frequent communication and coordination with the community partner. Local PD groups for whom the community partner provided contact information had prior interactions with the community partner, however when the opportunities from these groups for recruitment were exhausted and the team had to cast a wider net, the communication was done without input from the community partner. This could have hampered connecting with additional PD support/exercise/music groups and finding additional individuals. There could be benefits to discussing recruitment hardships with the community partner, and leaning on the community partner for additional connections to help improve recruitment. The QI team identified the need to be flexible as an opportunity for improvement. The team determined through the recruitment process that the inclusion criteria was too restrictive. Only including individuals who participated in specific behavioral speech therapy identified through the research, and from input from the community partner, led to rejection of individuals who could have provided value to the QI project. One of the rejected participants whose secondary data was collected did not qualify because they had only participated in sing therapy. 46 Sing therapy is an emerging speech therapy for ILwPD who experience hypophonia. Butala et al. (2022) found individuals who participated in sing therapy had a comparable increase in voice volume to LSVT LOUD and reported increased QoL. The QI team determined flexibility could be utilized to broaden the definition of behavioral speech therapy to include participation in sing therapy. QI projects and the PDSA cycle are cyclical; the QI team would like to emphasize the need to be flexible throughout the project. The QI team experienced hardships at different times throughout the project which required re-evaluation of steps in the PDSA cycle and pivoting. Difficulties and barriers inevitably occur throughout the project, and the QI team learned the value of flexibility, communication, resiliency, and collaboration within the QI process. The QI team learned that flexibility and willingness to pivot did not equate to failure of the project. Flexibility created the opportunity to expand the focus of and enrich the project to better understand ILwPD life experiences. Impact on Clinical Practice According to the American Association of Nurse Practitioners (AANP), there are approximately 385,000 APRNs in the US; 88% of Nurse Practitioners (NP) are certified in an area of primary care and 70% of all NPs deliver primary care (2024). APRNs in primary care serve as a bridge to health knowledge and clinical care, are catalysts for interprofessional team formation, and providers for many older adults with movement disorders (Ferguson et al., 2020). There is an increasing need for APRNs to be comfortable in their clinical assessment skills to identify the symptoms of PD. PD is diagnosed through clinical evaluation of the individual’s neurologic history, examination of the four cardinal symptoms, and other motor or nonmotor features. Tremors (shaking), rigidity (muscle stiffness), bradykinesia (slow movement), and 47 postural instability (balance problems), are the most distinctive features of Parkinson’s and are often referred to as the four cardinal signs (NINDS, 2023). It is important for APRNs to have in-depth knowledge to help their patients take control of their lives and manage their disease. PD is a progressive movement disorder without a cure. The goal is to preserve an individual’s QoL and delay the rate of the disease progression. Understanding the impact of hypophonia on ILwPD provides an opportunity for APRNs to improve the QoL of those who experience this symptom. Carbidopa/Levodopa (Sinemet) is the most prescribed medication used to treat PD. Individuals taking carbidopa/levodopa typically see a decrease in the PD symptoms, however the medication does not stop the progression of the disease, and research has shown it typically will not help with hypophonia. Managing PD symptoms extend beyond understanding the pharmacological approaches. Non-pharmacologic management is just as important to the QoL of ILwPD. Research demonstrates that using rehabilitative therapies in ILwPD can reduce the severity of motor and nonmotor symptom disability, enhance QoL, and improve overall health outcomes. However, the use of rehabilitation therapy for ILwPD is low globally (Goldman et al., 2024). In a QI initiative conducted by the Parkinson’s Foundation that consisted of 5,000 participants, less than one third of ILwPD received a referral to either a SLP (7.5%), PT (30.4%), and OT (8%) (Goldman et al., 2024). The effects of the lack of rehabilitation referral led to increased incidents of immobility resulting in falls, or dysphagia both of which are often symptoms noted in the advanced stages of PD. In 2023, the International Parkinson’s Foundation Rehabilitation Medicine Task Force (Task Force), gathered experts across the globe with representatives from the disciplines of SLP, PT, and OT to create a consensus statement and establish a guideline to incorporate a multidisciplinary rehabilitative care-delivery model for PD (Goldman et al. 2024). The Task Force advocated for increased referrals to rehabilitation services initiated upon diagnosis of PD, and for clinicians to reassess periodically throughout the progression of PD for the evolving needs of the ILwPD (Goldman et al., 2024). 48 The QI team attended the American Parkinson’s Disease Association (APDA) Annual Conference in 2024 and learned some valuable takeaways for the healthcare team members, ILwPD, and their caregivers. Advice from the panelist to newly diagnosed PD patients is to focus on education, rehabilitation, and collaborative care. Educate yourself! APRNs can refer ILwPD to trusted organizations such as Parkinson’s Voice Project, APDA, Parkinson’s Foundation, Michael J Foxx Foundation, and The Davis Phinney Foundation. Start moving! APRNs can assist the physical abilities of the ILwPD and encourage individuals to participate in safe exercise activities such as yoga, pickleball, walking, and biking. If necessary for individuals with physical limitations, referral can be made to PT or OT to help select exercises that improve endurance, strength, balance, and stretching. Collaboration! Assemble a collaborative interdisciplinary rehabilitative team (see Box 4), APRNs should get to know colleagues who specialize in movement disorders within the community they work in, as this will improve the management of the disease (Gilbert, 2022). According to the APDA panelist, the most important thing for an ILwPD is to find a neurologist who has additional years of specialized training in movement disorders such as PD (Gilbert, 2022). 49 Box 4 Assemble a Healthcare Team Primary care provider Assemble a Healthcare Team Movement Disorder Specialist, Neurologist helps with the diagnosis and medical management Rehabilitation-Speech Therapy, Physical, and Occupational Therapy Dietician-Mediterranean diet is best for the brain Psychosocial Support-PD support groups, Social Worker, Psychiatrist, or Psychologist (Gilbert, 2022) APRNs can encourage ILwPD to form connections and collaboration with other ILwPD. There is value in sharing experiences in local support groups, social media organizations, or conferences. This QI project emphasized the importance of APRNs to learn and listen to the lived experience of individuals with chronic diseases, not just specifically PD, to foster improved QoL. 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American Congress of Rehabilitation Medicine, 1-12. https://doi.org/10.1016/j.apmr.2023.07.007 Appendix A Anatomically How Sound is Produced 58 Figure from a US government public domain diagram by the National Institute on Deafness and Other Communication Disorders available at https://www.nidcd.nih.gov/voice-video Appendix B Community Partner Agreement Letter 59 60 Appendix C Recruitment Letter 61 62 Appendix D Recruitment Flyer Appendix E Initial Phone Screening Script 63 64 65 66 67 68 Appendix F Qualtrics Survey ● What is your current age? ○ 50 to 64 years of age ○ 65 to 84 years of age ○ 85 to 99 years of age ○ 100 years of age and older ● What is your sex? ○ Male ○ Female ● Which phrase or word below is the one that best describes yourself? ○ Straight or heterosexual ○ Gay ○ Lesbian ○ Bisexual ○ Transgender ○ I use a different term ○ I don’t know ● What is your ethnicity? ○ American Indian or Alaska Native ○ Asian ○ Black or African American ○ Hispanic or Latinx ○ Native Hawaiian or Other Pacific Islander 69 ○ White ○ Other ● Are you a veteran? ○ Yes ○ No ○ Not sure ● What is your highest level of education obtained? ○ Some elementary school ○ Some high school ○ High school graduate ○ Trade school ○ Some college (community or 4 year)Associate degree ○ Bachelors degree ○ Masters degree ○ Doctorate degree ○ Other ● Which of the following describes your personal relationship? ○ Single ○ Married ○ Separated ○ Divorced ○ Widowed ○ Partner ○ Other ● Who do you currently live with? (Mark all that apply) 70 ○ Alone ○ Spouse ○ Partner ○ Friend ○ Children ○ Parent ○ Other family member ○ Other ● What is your current living environment? ○ Single house ○ Apartment ○ Condo ○ Senior housing ○ Continuing care retirement community ○ Assisted living ○ Adult foster care ○ Nursing home ○ Hospice facility ○ Other ● How many years ago were you diagnosed with Parkinson’s disease? ○ 1 to 2 years ○ 3 to 5 years ○ 6 to 8 years ○ 9 years or more ○ Do not recall ● How many years ago did you notice your voice changing? 71 ○ 1 to 2 years ○ 3 to 5 years ○ 6 to 8 years ○ 9 years or more ○ My voice never changed ○ Do not recall ● How long has it been since you participated in a behavioral speech therapy program? ○ 0 to 1 years ○ 2 to 3 years ○ 4 to 5 years ○ 5 or more years ○ Do not recall ● Have you participated in any of the following behavioral speech therapy programs? ○ LSVT LOUD ○ SPEAK OUT! ○ Other ○ Do not recall 72 Appendix G QI Interview Script 73 74 75 76 Appendix H IRB Approval Non-Research Letter 77 78