Current Status of Integrated Palliative Care Among Parkinson Foundation Centers of Excellence in the United States.

Background and Objectives: To assess the current structures, knowledge, and readiness to integrate palliative care (PC) into Parkinson disease (PD) care at Parkinson's Foundation Centers of Excellence (COE) in the United States. Methods: Three unique surveys were administered to health care professionals/staff at COEs to assess PC (1) resources, (2) knowledge and comfort, (3) clinical experience and processes, (4) barriers, and (5) readiness for implementation. Results: Response rates for the 3 surveys were 97%, 98%, and 56%. In total, 41% of COEs have access to outpatient PC specialists, 71% have mental health counseling, 82% have support groups, and 9% had very limited PC resources. Overall, 74% of providers believed persons with advanced PD should receive PC, and knowledge of PC fundamentals was good across providers. For high-needs persons with PD (PWP), only 16% of physicians and 24% of advanced practice providers made referrals to PC specialists ≥75% of the time, while 9% and 16% never made such referrals. Limited time, space, financing, and staffing were seen as major barriers to PC implementation. In total, 37% of providers were satisfied with their COE's ability to provide PC services. Most COEs report a culture open to change and appear well-positioned to implement PC in a more comprehensive fashion. Discussion: These results demonstrate the emergence of structures and processes to provide PC to persons with PD at COEs. They also identify concrete opportunities to strengthen integration of PC through educational, quality improvement, and advocacy efforts.

Uncovering Patient and Caregiver Goals for Goal-Concordant Care in Kidney Therapy Decisions.

CONTEXT: In kidney therapy (KT) decisions, goal-concordant decision-making is recognized to be important, yet alignment with patients' goals during dialysis initiation is not always achieved. OBJECTIVES: To explore older patients' and caregivers' hopes, goals, and fears related to KT and communication of these elements with members of their health care team. METHODS: The study included patients aged ≥75 years with an estimated glomerular filtration rate ≤25 mL/min/1.73 m2 and their caregivers enrolled in a palliative care intervention for KT decision-making. Patients and caregivers were asked open-ended questions about their hopes, goals, and fears related to KT decisions. A survey assessed if patients shared their goals with members of their health care team. Qualitative data underwent content analysis, supplemented by demographic descriptive statistics. RESULTS: The mean age of patients (n = 26) was 82.7 (±5.7) years, and caregivers (n = 15) had a mean age of 66.4 (±13.7) years. Among the participants, 13 patients and 11 caregivers were women, and 20 patients and 12 caregivers were White. Four themes emerged: (1) Maintaining things as good as they are by avoiding dialysis-related burdens; (2) seeking longevity while avoiding dialysis; (3) avoiding pain, symptoms, and body disfigurement; and (4) deferring decision-making. Patients rarely had shared their goals with the key members of their health care team. CONCLUSION: Patients and caregivers prioritize maintaining quality of life, deferring decision-making regarding dialysis, and avoiding dialysis-related burdens. These goals are often unshared with their family and health care teams. Given our aging population, urgent action is needed to educate clinicians to actively explore and engage with patient goals in KT decision-making.

Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.

BACKGROUND: Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving. AIM: To understand family members' perception of their role, and of the challenges and rewards of PD caregiving. METHOD: Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners (n = 16). Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes. RESULTS: We identified 5 themes: (a) Unpredictability is the hardest part of caregiving. It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; (b) Disease progression and multiple symptoms contribute to carepartners' emotional distress. Carepartners felt unprepared and were saddened by the patient's and their own losses; (c) Caring for a family member is not a "burden." Though stressful, carepartners resisted associating caregiving with the term "burden"; (d) Caregiving is a partnership. Carepartners saw their role as being less of "givers" and more of partners in disease management; and (e) Caregiving is an opportunity for personal satisfaction, joy, and growth. Caregiving was seen as a "gift" that enabled carepartners to express love and experience personal growth. CONCLUSIONS: Despite challenges PD carepartners view their role as "partners" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.

Caregiver Burden in Parkinson Disease: A Scoping Review of the Literature from 2017-2022.

Caregiver burden is a term that refers to the adverse effect of caregiving on the physical, emotional, social, spiritual, and financial well-being of the caregiver. Caregiver burden is associated with providing care to an individual with a chronic illness or disability, and the unique symptoms of Parkinson disease (PD) can amplify a patient's needs and reliance on others, leading to adverse outcomes for patients and their caregivers. In this scoping review of the literature from January 2017 through April 2022 that included 114 studies, we provide an updated, evidence-based summary of patient and caregiver-related factors that contribute to caregiver burden in PD. We also describe the impact of caregiver stress and burden on caregivers based on qualitative research studies and review recent interventions to mitigate burden. By providing clinical updates for practitioners, this review is designed to improve recognition of caregiver burden in the post-pandemic era and foster the development of targeted interventions to reduce caregiver burden in PD.

Parkinson disease patients' and carepartners' perceptions of palliative care.

INTRODUCTION: Outpatient palliative care offers an opportunity to improve the quality of life of Parkinson's disease (PD) patients and families. While there are efforts to improve clinicians' palliative care knowledge and skills, there is limited knowledge on patients and carepartners' knowledge and perceptions of palliative care. As part of a larger study on implementing outpatient palliative care, this study aimed to understand patients' and carepartners' knowledge and perceptions of palliative care, and their palliative care needs and preferences prior to the implementation. METHODS: Using qualitative descriptive research design, we completed semi-structured interviews with 47 patients and carepartners prior to the project implementation. De-identified transcripts of interviews were coded and analyzed. RESULTS: Five themes were identified that describe patients' and carepartners' palliative care knowledge, perceptions, needs and preferences: (a) Patients and carepartners have varied knowledge and perceptions of palliative care (b) Non-motor symptoms are challenging for patients and carepartners, (c) Addressing patients' grief and emotional needs is important to patients and carepartners, (d) Carepartners want a place for emotional care, well-being, and strategizing and (e) Patients and carepartners desire anticipatory guidance and care planning. Study participants desired guidance to manage non-motor symptoms, support for patients' emotional needs and for carepartners, and for anticipatory guidance to guide future planning. CONCLUSIONS: Despite varied palliative care knowledge, PD patients and carepartners universally desire care that addresses their palliative care needs. Palliative care education and integration of palliative care approaches into standard care may facilitate increased acceptance of outpatient palliative care throughout the disease trajectory.

Reach of Palliative Care for Parkinson Disease: Results From a Large National Survey of Patients and Care Partners.

Background and Objectives: People with Parkinson disease (PWP) and their care partners have high palliative care needs resulting from disabling motor and nonmotor symptoms. There is growing support for palliative care (PC) approaches to Parkinson disease. However, little is known regarding the extent to which the palliative needs of PWP and care partners are currently being met. This study's primary objective is to describe PWP's and care partners' perceptions of the extent to which their PC needs are being met. Secondary objectives are to describe their perceptions of the quality of clinical communication and their knowledge of PC. Methods: PWPs and care partners (n = 12,995) who had consented to receiving surveys from the Parkinson's Foundation were emailed an electronic survey. PC was operationalized as comprising 5 key components: systematic assessment and management of (1) nonmotor symptoms, (2) PWPs' emotional and spiritual needs, (3) care partners' needs, (4) the completion of annual advance care planning, and (5) timely referrals to specialist palliative care and hospice when appropriate. Results: A total 1,882 individuals (1,266 PWP and 616 care partners) responded to the survey (response rate 14.5%). Few PWP (22%) reported that their neurologists never asked regarding bothersome nonmotor symptoms or did so or only if they brought it up. Fifty percent of PWP reported that pain as a specific nonmotor symptom was never managed or managed only if they brought it up. Similarly, PWPs' emotional and spiritual needs (55%), care partners' well-being (57%), and completion of advance care planning documentation (79%) were never addressed or only addressed if PWP brought it up. The quality of clinical communication was generally rated as open and honest (64% PWP). Fewer PWP (30%) reported that doctors helped them deal with the uncertainties of Parkinson disease. Most PWP (85%) reported being knowledgeable regarding PC, and 68% reported that the goal of PC was to help friends and family cope with the illness. Discussion: Although some elements of PC are currently being addressed in routine care for PWP, there are many gaps and opportunities for improvement. These data may facilitate focused attention and development of resources to improve the quality and availability of PC for Parkinson disease.

Spirituality and Spiritual Distress in Parkinson's Disease Caregivers: A Scoping Review.

Despite recognition that spiritual concerns contribute to caregiver burden, little is known about spirituality, spiritual well-being, and spiritual distress in Parkinson's disease caregivers. In this scoping review of the literature through October 2022, we searched PubMed, PsychINFO, Embase, and CINAHL. From an initial pool of 328 studies, 14 were included. Caregiver factors (e.g., depression, age) and patient factors (e.g., faith, motor function) affected caregiver spirituality and spiritual well-being. Caregivers experienced loss of meaning, existential guilt, and loneliness, and coped through acquiescence, cultural beliefs, prayer, and gratitude. Future research should focus on the specific spiritual needs of Parkinson's disease caregivers and interventions to address them.

Training Researchers in the Field of Religion, Spirituality, and Health: Experiences from a Workshop in the United States and Recommendations for Future Workshop Curricula.

Although a substantial amount of research has been conducted in the field of religion, spirituality, and health, much still needs to be done. Training of researchers to conduct studies in the field of religion, spirituality, and health is essential for continued academic and methodological rigor. Such training should be globally oriented to ensure both representation and evidence from non-western cultures which is currently lacking. While little attention is given to this area in mainstream contemporary academic curricula, some researchers in the field have provided exceptional leadership in designing programs to train future researchers. In this commentary, the authors who participated in one such training program at Duke University, offer their insights based on a qualitative descriptive analysis of survey responses from a sample of participants. These insights relate to participants' perceptions of the most valuable experiences from a workshop on religion, spirituality, and health, and include recommendations for future content in training programs in this field. The multicultural aspect of the program with researchers, clinicians, and other professionals from 17 different countries was the most enriching aspect of the workshop. One of the key recommendations for future training efforts is to dedicate workshop time for participants to work collaboratively in the design and plan for international and interdisciplinary research projects with guidance from faculty.Please confirm if the author names are presented accurately and in the correct sequence (given name, middle name/initial, family name). Author 1 Given name: [Tobias Anker] Last name [Stripp]. Also, kindly confirm the details in the metadata are correct.They are correct.

Between a Rock and a Hard Place: The Challenges of Caregiving During a Pandemic for Parkinson's Family Care Partners.

Aim: To understand Parkinson's Disease (PD) care partners' a) specific challenges that led to worsening strain and b) their suggestions for supports to help them during the ongoing pandemic. Method: Using a qualitative descriptive design, semi-structured interviews with family care partners (n = 19) were completed. Participants were recruited from 10 sites across the United States that varied in size, demographics of patient population served, and geographic location (urban, suburban, rural). Interviews were audio-recorded, de-identified, transcribed verbatim, and coded in a phased manner. The research team analyzed the data and identified themes. Results: During the pandemic, the already difficult task of caregiving was made worse by having to choose between poor options. Five themes exemplified PD care partner experiences: (1) Managing risks and benefits of medical care in settings outside the home vs meeting these needs at home; (2) Struggling to maintain employment benefits with the costs of care and risks of bringing in outside caregivers; (3) Struggling to balance caregiving and self-care; (4) Struggling to be supportive and taking on new caregiving roles in the face of less support services; and (5) Wanting social connections and feeling pressured to maintain isolation. Care partners wanted timely access to, and guidance from healthcare teams to help them. Conclusions: Care partner burden was worsened by lack of guidance when confronted by choices that could lead to negative outcomes. Movement disorder and palliative care providers may be able to alleviate some care partner burden through building systems for timely access and guidance.

Aggression Towards Caregivers in Parkinson's Disease and Related Disorders: A Mixed Methods Study.

Background: Aggression is one manifestation of behavioral disturbances in neurodegenerative disease with emerging literature suggesting a high prevalence in Parkinson's disease and related disorders (PDRD). Objectives: Our aim was to describe characteristics, associated factors, and consequences of aggression towards caregivers in PDRD. Methods: This is a convergent mixed methods study, leveraging data from 296 PDRD patient-caregiver dyads in a clinical trial of palliative care and semi-structured interviews with a subgroup of 14 caregivers who reported aggression. The primary outcome was baseline caregiver-reported aggression. Using multivariate linear regression, baseline dyad characteristics (eg, measures of disease, psychosocial issues, caregiver strain) were examined to identify factors associated with aggression. Thematic analysis of interviews was used to augment these findings. Results: Associated variables included disease duration (r = 0.15, P < 0.05), patient grief (r = 0.22, P< 0.001), symptom burden (r = 0.18, r < 0.01), resistance to care (r = 0.40, P < 0.01), caregivers' depression (r = 0.16, P < 0.05), and caregiving burden (r = 0.34, P < 0.001). We identified five themes: (1) Aggressive behaviors range from verbal abuse to threats of physical violence; (2) Caregivers believe that aggressive behaviors result from the difficulty patients experience in coping with disease progression and related losses; (3) Caregivers' stress and mental health are worsened by aggressive behaviors; (4) Aggressive behaviors negatively affect patient-caregiver relationships; (5) Caregivers are ill-prepared to manage aggressive behaviors and cope with the consequences on their own. Conclusions: Aggression in PDRD is driven by diverse factors (eg, grief, fluctuations in cognition) with serious consequences for caregivers. Neurologists and movement specialists should consider screening for aggression while prioritizing caregiver education and wellbeing.

Practices and activities among healthcare personnel with severe acute respiratory coronavirus virus 2 (SARS-CoV-2) infection working in different healthcare settings-ten Emerging Infections Program sites, April-November 2020.

Healthcare personnel with severe acute respiratory coronavirus virus 2 (SARS-CoV-2) infection were interviewed to describe activities and practices in and outside the workplace. Among 2,625 healthcare personnel, workplace-related factors that may increase infection risk were more common among nursing-home personnel than hospital personnel, whereas selected factors outside the workplace were more common among hospital personnel.

Risk Factors for SARS-CoV-2 Infection Among US Healthcare Personnel, May-December 2020.

To determine risk factors for coronavirus disease (COVID-19) among US healthcare personnel (HCP), we conducted a case-control analysis. We collected data about activities outside the workplace and COVID-19 patient care activities from HCP with positive severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) test results (cases) and from HCP with negative test results (controls) in healthcare facilities in 5 US states. We used conditional logistic regression to calculate adjusted matched odds ratios and 95% CIs for exposures. Among 345 cases and 622 controls, factors associated with risk were having close contact with persons with COVID-19 outside the workplace, having close contact with COVID-19 patients in the workplace, and assisting COVID-19 patients with activities of daily living. Protecting HCP from COVID-19 may require interventions that reduce their exposures outside the workplace and improve their ability to more safely assist COVID-19 patients with activities of daily living.

"There is no one to pick up the pieces": Sustainability of antibiotic stewardship programs in nursing homes.

OBJECTIVE: To describe nursing home staff experiences and perceptions of the factors that impact the sustainability of an antibiotic stewardship program (ASP). METHODS: Using a qualitative descriptive design, semistructured interviews with staff at 9 not-for-profit nursing homes with an established ASP were conducted and audio recorded. De-identified transcriptions of the interviews were coded using a sustainability framework and were analyzed to identify themes. RESULTS: Interviews were conducted with 48 clinical and administrative staff to elicit their perceptions of the ASPs, and 7 themes were identified. ASPs were perceived to be resource intensive and "data driven," requiring access to and interpretation of data that are not readily available at many nursing homes. Though motivated and committed, ASP champions felt that they could not single-handedly sustain the program. Attending to daily clinical needs (ie, "fires") made it hard to progress beyond implementation and to reach step 2 of sustainability. Longstanding treatment habits by external prescribers and regulations were believed to impede ASP efforts. Partnerships with an external consultant with antibiotic stewardship expertise were considered important, as was the need for internal leadership support and collaboration across disciplinary boundaries. Participants felt that consistent and ongoing education on antibiotic stewardship at all staff levels was important. CONCLUSIONS: Although many interconnected factors impact the sustainability of an ASP, nursing homes may be able to sustain an ASP by focusing on 3 critical areas: (1) explicit support by nursing home leadership, (2) external partnerships with professionals with antibiotic stewardship expertise and internal interprofessional collaborations, and (3) consistent education and training for all staff.

Exploring SEIPS 2.0 as a model for analyzing care transitions across work systems.

Care transitions across healthcare settings, specifically between the emergency department (ED) and the home, are pervasive among older adults, and represent persistent healthcare quality and safety challenges. Care transitions cross multiple distinct work systems, representing a conceptual and methodological challenge for the field of Human Factors/Ergonomics - how to analyze a process that occurs across multiple work systems. As an initial step in determining how to study care transitions across work systems, we applied the Systems Engineering Initiative for Patient Safety (SEIPS) 2.0 model, specifically the concept of configuration, to explore older adults' ED-to-home transitions. Our results suggest that configuration is useful for identifying and modeling work system barriers that interact across systems, but does not explicitly allow for the identification and analysis of the system boundaries that are crossed. To fully capture the complexity associated with care transitions, future iterations of SEIPS should introduce a mechanism to capture specific boundary types, so that system analysis can capture when and which boundaries are crossed.

Balancing Eating With Breathing: Community-Dwelling Older Adults' Experiences of Dysphagia and Texture-Modified Diets.

Purpose: Although many older adults suffer from dysphagia and are required to eat texture-modified diets, little is known about the experiences and challenges faced in doing so at home. In this study, we explored the perspectives of community-dwelling older adults as they struggled to balance dysphagia symptoms and recommended diet modifications with their preferred lifestyles. Design and Methods: Using an interpretive descriptive design, we conducted 37 in-home semi-structured interviews and 5 member-checking interviews, participant observations during a meal, and reviewed the medical charts of 20 participants recruited through maximum variation purposeful sampling. Meaning units and codes were identified and synthesized into 4 themes. Results: Participants faced a frightening choice between eating and breathing. Hiding dysphagia symptoms from the public eye was important to preserve self-identity. Following the recommended diet created a feeling that life was "falling apart." We also found that adhering to the diet was not an "all or none" phenomenon. Implications: Given that correct adherence to the restrictive diet is rare, to effectively manage dysphagia symptoms, clinicians must appreciate the full range of impact of dysphagia and texture-modified diets on the lives of older adults.

Patient Perspectives on Accessing Acute Illness Care.

INTRODUCTION: Older adults use the emergency department (ED) at high rates, including for illnesses that could be managed by their primary care providers (PCP). Policymakers have implemented barriers and incentives, often financial, to try to modify use patterns but with limited success. This study aims to understand the factors that influence older adults' decision to obtain acute illness care from the ED rather than from their PCPs. METHODS: We performed a qualitative study using a directed content analysis approach from February to October 2013. Fifteen community-dwelling older adults age≥65 years who presented to the ED of an academic medical center hospital for care and who were discharged home were enrolled. Semi-structured interviews were conducted initially in the ED and subsequently in patients' homes over the following six weeks. All interviews were audio-recorded, transcribed, verified, and coded. The study team jointly analyzed the data and identified themes that emerged from the interviews. RESULTS: The average age of study participants was 74 years (standard deviation ±7.2 years); 53% were female; 80% were white. We found five themes that influenced participants' decisions to obtain acute illness care from the ED: limited availability of PCP-based care, variable interactions with healthcare providers and systems, limited availability of transportation for illness care, desire to avoid burdening friends and family, and previous experiences with illnesses. CONCLUSION: Community-dwelling older adults integrate multiple factors when deciding to obtain care from an ED rather than their PCPs. These factors relate to personal and social considerations, practical issues, and individual perceptions based on previous experiences. If these findings are validated in confirmatory studies, policymakers wishing to modify where older adults receive care should consider person-centered interventions at the system and individual level, such as decision support, telemedicine, improved transport services, enhancing PCPs' capabilities, and enhancing EDs' resources to care for older patients.