"How do You Take that Much Time for One Person's Life?" Experiences of Dementia Caregivers Who are Not Immediate Family.

One in three people with Alzheimer's or other dementias lives alone, without a spouse/partner or nearby children (i.e., is aging solo), yet most dementia caregiving research has focused solely on spouses or children.

Symptoms and quality of life in adults with cystic fibrosis: A cross-sectional analysis of the InSPIRe:CF trial.

Background: People living with cystic fibrosis (CF) experience a high symptom burden. Due to the changing landscape of CF in the era of modulator therapy, we sought to examine the epidemiology of symptoms and their association with quality of life, to help CF clinicians improve symptom screening in clinic.

Methods: Using baseline data from a trial of specialist palliative care in adults with CF, we examined symptom prevalence, distress, and association with quality of life (measured with the Functional Assessment of Chronic Illness Therapy Total Score).

When People Facing Dementia Choose to Hasten Death: The Landscape of Current Ethical, Legal, Medical, and Social Considerations in the United States.

Some individuals facing dementia contemplate hastening their own death: weighing the possibility of living longer with dementia against the alternative of dying sooner but avoiding the later stages of cognitive and functional impairment. This weighing resonates with an ethical and legal consensus in the United States that individuals can voluntarily choose to forgo life-sustaining interventions and also that medical professionals can support these choices even when they will result in an earlier death. For these reasons, whether and how a terminally ill individual can choose to control the timing of their death is a topic that cannot be avoided when considering the dementia trajectory.

Proactive Care-Seeking Strategies Among Adults Aging Solo With Early Dementia: A Qualitative Study.

Objectives: People living with dementia need increasing care over time, but 1 in 3 adults with cognitive impairment lives alone. The goal of this study was to explore the self-identified strengths and resources for future care needs of adults aging solo with early dementia.

Methods: Semistructured interviews with 15 adults not living with a partner and with no children in the same state, who self-identified as having early dementia or mild cognitive impairment; hybrid inductive/deductive reflexive thematic analysis using a successful aging framework.

Pulmonary Function and Quality of Life in Adults with Cystic Fibrosis.

Purpose: People living with cystic fibrosis (CF) experience impaired quality of life, but the extent to which pulmonary function is associated with quality of life in CF remains unclear METHODS: Using baseline data from a trial of specialist palliative care in adults with CF, we examined the association between pulmonary obstruction and quality of life (measured with the Functional Assessment of Chronic Illness Therapy Total Score).

Results: Among 262 participants, median age was 33, and 78% were on modulator therapy. The median quality of life score was higher in those with mild obstruction (135, IQR 110-156) compared to moderate (125, IQR 109-146) and severe obstruction (120, IQR 106-136).

Clinician perspectives on barriers and solutions to symptom management in cystic fibrosis.

People living with cystic fibrosis (PLwCF) experience high symptom burden. 146 clinicians completed online surveys regarding barriers and solutions to symptom management between September and October 2020. The surveys contained both closed-ended and free-text entries.

Embedded Specialist Palliative Care in Cystic Fibrosis: Results of a Randomized Feasibility Clinical Trial.

Cystic fibrosis (CF) is a progressive genetic disease characterized by multisystem symptom burden. Specialist palliative care (PC), as a model of care, has been shown to be effective in improving quality of life and reducing symptom burden in other conditions, but has not been tested in CF. To develop and test the feasibility and acceptability of a specialist PC intervention embedded within an outpatient CF clinic.

Solo but Not Alone: An Examination of Social and Help Networks among Community-Dwelling Older Adults without Close Family.

This study evaluates help sources for personal and health tasks of adults living in the community without a spouse or nearby children. Using data from the National Health and Aging Trends Study (NHATS), a nationally representative sample of Medicare beneficiaries ages 65 and over, we conducted a population-based study of 2998 community-dwelling adults who received assistance with personal, household, or medical tasks in the past month. Using ANOVA, we compared adults aging solo to those with spouses at home and/or children in the same state.

Integrating specialist palliative care to improve care and reduce suffering: cystic fibrosis (InSPIRe:CF) - study protocol for a multicentre randomised clinical trial.

Introduction: Cystic fibrosis (CF) is a life-limiting genetic disorder estimated to affect more than 160 000 individuals and their families worldwide. People living with CF commonly experience significant physical and emotional symptom burdens, disruptions to social roles and complex treatment decision making. While palliative care (PC) interventions have been shown to relieve many such burdens in other serious illnesses, no rigorous evidence exists for palliative care in CF.

Prevalence of unmet pain and symptom management needs in adults with cystic fibrosis.

Background: Although people living with CF (PLwCF) commonly report pain and other symptoms, little is known regarding their experiences of living with and accessing treatment for burdensome symptoms.

Methods: PLwCF completed online questionnaires assessing symptom prevalence and distress and were also asked about experiences accessing pain and symptom treatment, using both closed-ended and free-text entries.

Results: Pain was the most prevalent symptom experienced among the 55 participants (76%) and the symptom that most commonly caused distress (64%).

Primary palliative care for heart failure provided within ambulatory cardiology: A randomized pilot trial.

Background: Heart failure is characterized by physical and emotional symptoms and decreased quality of life (QoL). Palliative care can reduce burdens of serious illness but often is limited to inpatient or academic settings.

Objectives: To develop and test the Primary Education for Nurses in Palliative care-HF (PENPal-HF) intervention, training outpatient cardiology nurses to address symptom burden, patient priorities for care and QoL, and advance care planning as part of quarterly HF visits.

Barriers of Acceptance to Hospice Care: a Randomized Vignette-Based Experiment.

Background: The per diem financial structure of hospice care may lead agencies to consider patient-level factors when weighing admissions.

Objective: To investigate if treatment cost, disease complexity, and diagnosis are associated with hospice willingness to accept patients.

Design: In this 2019 online survey study, individuals involved in hospice admissions decisions were randomized to view one of six hypothetical patient vignettes: "high-cost, high-complexity," "low-cost, high-complexity," and "low-cost, low-complexity" within two diseases: heart failure and cystic fibrosis.

Lessons Learned from Developing Plain Language Summaries of Research Studies.

Background: Plain language translation may facilitate the public's ability to understand and use results of scientific research. Brief description of activity: This article describes the Patient-Centered Outcomes Research Institute's (PCORI) approach to and lessons learned from developing plain language summaries of PCORI-funded research for the lay public.

Implementation: We developed and tested a standard template for the summaries, incorporating feedback in the template design from focus groups with members of the public.

Experience of Caregivers Supporting a Patient through Voluntarily Stopping Eating and Drinking.

Voluntarily stopping eating and drinking (VSED) is an ongoing voluntary choice to forego food and hydration in an effort to hasten death. Ongoing caregiving is necessary as patients become weak and lose focus as a result of dehydration, but little is known about the process of supporting a patient through VSED. To explore the experiences of caregivers who supported a patient through VSED.

Overview of voluntarily stopping eating and drinking to hasten death.

Voluntarily stopping eating and drinking is a means of hastening death. Unlike euthanasia or medical aid in dying, which are available only in certain jurisdictions and with assistance from health care professionals, the ability to die by voluntarily stopping eating and drinking is determined by ongoing patient choice, although clinical and caregiver support is recommended. Few studies have examined the incidence of patients choosing to stop eating and drinking; studies in the Netherlands and United States suggest patients choosing this route have concerns about both physical and existential suffering.