Spirituality, Spiritual Distress and Experiences of Joy, Meaning and Growth Among Parkinson's Disease Caregivers in the United States.

Caregiving challenges of Parkinson's disease can result in loss of faith, meaning, and spiritual distress. The purpose of this study is to describe Parkinson's disease caregivers' perceptions and experiences related to spiritual distress, sources of spiritual and religious support, acts, and experiences of growth, and finding meaning and joy in the midst of spiritual distress. We conducted semi-structured interviews with caregivers of persons with Parkinson's disease (n = 16) and identified five themes: (a) Bearing witness to suffering underlies spiritual distress; (b) Prayers are pleas for "soul help"; (c) Spiritual guidance and support are important; (d) Faith and community are sources of spiritual support; and (e) Joy, meaning, and growth help to transcend spiritual distress.

Sustaining Joy in Serious Neurologic Illnesses.

The goals of medicine tend to be framed around addressing suffering, pathology, and functional deficits. While this is a natural orientation when dealing with serious illness, it is also incomplete and neglects significant opportunities to improve the quality of life of patients, families, and clinicians. The "total enjoyment of life" is a multidimensional framework that can serve as a positive counterbalance to the "total pain of illness.

Clinicians' Perspectives on the Telehealth Serious Illness Care Program for Older Adults With Myeloid Malignancies: Single-Arm Pilot Study.

Background: Serious illness conversations may help patients avoid unwanted treatments. We previously piloted the telehealth Serious Illness Care Program (SICP) for older adults with acute myeloid leukemia and myelodysplastic syndrome.

Objective: In this study, we aimed to understand the experience of the telehealth SICP from the clinician's perspective.

National plans and awareness campaigns as priorities for achieving global brain health.

Neurological conditions are the leading cause of death and disability combined. This public health crisis has become a global priority with the introduction of WHO's Intersectoral Global Action Plan on Epilepsy and Other Neurological Disorders 2022-2031 (IGAP). 18 months after this plan was adopted, global neurology stakeholders, including representatives of the OneNeurology Partnership (a consortium uniting global neurology organisations), take stock and advocate for urgent acceleration of IGAP implementation.

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%.

Holding back in communications with clinicians: Patient and care partner perspectives in Parkinson's disease.

Objectives: To describe how patients with Parkinson's disease (PD) and care partners choose to share or withhold information from clinicians.

Methods: This is a qualitative, descriptive study nested within a multisite, randomized clinical trial of outpatient palliative care compared to standard neurologic care for PD. Interviews with patients ( = 30) and care partners ( = 30) explored experiences communicating with neurology clinicians.

Does a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability.

Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease.

Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care).

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.

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.

Telehealth serious illness care program for older adults with hematologic malignancies: a single-arm pilot study.

Older patients with acute myeloid leukemia (AML) and myelodysplastic syndrome (MDS) feel shocked and bewildered when diagnosed. Serious illness conversations (SICs) may increase disease understanding and preparations for the future. However, SICs often happen late, in part because of clinician-perceived patient discomfort.

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.

Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation.

Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings.

The elephant in the room: critical reflections on mortality rates among individuals with Parkinson's disease.

In our efforts to create more public awareness about Parkinson’s disease, we often emphasize the tremendous impact of this common disease on an individual’s life. However, in public awareness campaigns, we largely avoid discussions on the survival of people with Parkinson’s disease (PwP). Many clinicians even state that the survival with Parkinson’s disease is close to normal.

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.

The "Surprise Question" for Prognostication in People With Parkinson's Disease and Related Disorders.

Context: Parkinson's disease and related disorders (PDRD) are fatal neurodegenerative disorders characterized by a fluctuating course that can complicate prognostication. The "surprise question" (SQ: "Would you be surprised if your patient died in the next year?") has been used to identify patients with limited prognosis but has not been assessed in PDRD.

Objectives: To determine the validity of the SQ in predicting 12-month mortality in PDRD.

Spatiotemporal dynamics of selective attention and visual conflict monitoring using a Stroop task.

Selective attention and conflict monitoring are daily human phenomena, yet the spatial and temporal neurological underpinnings of these processes are not fully understood. Current literature suggests these executive functions occur via diverse and highly interconnected neural networks, including top-down, bottom-up, and conflict-control loops. To investigate the spatiotemporal activity of these processes, we collected neuromagnetic data using magnetoencephalography (MEG) in 28 healthy adults (age 19-36), while they performed a computerized Stroop task based on color naming.

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.

Prognosis in chronic progressive neurologic disease: a narrative review.

Background And Objective: Prognostication is the process of predicting a patient's likely outcome from their medical condition, and consists of determining both how well and how long a patient may live. There are few disease-specific prognostic tools to estimate a patient's individualized prognosis in terms of symptom burden and mortality. Here we summarize relevant literature on prognosis in four progressive neurologic diseases-dementia, Parkinson's disease, amyotrophic lateral sclerosis, and multiple sclerosis-as well as on best practices on communicating prognosis with patients and care partners.

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.

The Total Enjoyment of Life: A Framework for Exploring and Supporting the Positive in Palliative Care.

The World Health Organization defines palliative care by its focus on improving quality of life (QOL). Although reducing suffering is part of improving QOL, it should not be the sole focus of our efforts. Opportunities for joy, meaning, love, and growth exist in the midst of serious illness and should be explored and supported even in the face of suffering.

Palliative care to support the needs of adults with neurological disease.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care.