Predictors of Final Place of Care in People With Advanced Dementia Receiving Home-Based Palliative Care in Singapore: A Multivariate Regression Analysis.

As the prevalence of dementia rises exponentially globally, instituting practices to support the dying process of people affected by dementia is a public health priority. However, end-of-life quality indicators such as place of death provide limited information about the totality of the dying process. Hence, this study's aim was to identify factors affecting the relatively understudied concept of final place of care (where care was received in the last three days of life i.

Experiences of individuals with functional/dissociative seizures with healthcare professionals: A systematic review and thematic synthesis.

Objective: Research suggests people with functional/dissociative seizures (pwFDS) often experience challenging encounters with healthcare professionals (HCPs). PwFDS report communication problems, difficult relationships with HCPs and sub-standard care. However, no previous reviews have explored this issue from the perspective of pwFDS.

Deprivation is associated with hospital conveyance among patients who are terminally ill.

Background: Hospital admissions of patients who are terminally ill can be associated with poor experiences and unwanted outcomes, such as dying away from home. While area deprivation is associated with emergency hospital admissions in the last year of life, few studies have explored the relationship between deprivation and ambulance clinicians' decisions to convey a patient to the hospital. The aim of this study is to understand the overall proportion of terminally ill patients conveyed to hospitals by paramedics in North West England, and to explore the associations between hospital conveyance and area deprivation.

Predictors of Informal Caregiver Burden in Parkinson's Disease: A Systematic Review.

Background: Caregivers of people with Parkinson's disease are at risk of experiencing . Understanding contributing factors is required to develop appropriate targeted interventions and support for this group. This systematic review provides an updated appraisal and synthesis of quantitative studies assessing predictors of burden among informal caregivers of people with Parkinson's.

Improving access to pulmonary rehabilitation for patients with COPD treated for substance misuse in the London Borough of Islington.

Chronic obstructive pulmonary disease (COPD) is a collection of conditions that cause permanent damage to the lungs. Among a range of treatment options, patients can benefit from pulmonary rehabilitation (PR) programmes involving physical exercises and education.The risk of developing COPD is higher for substance misusers than the general population.

The connection between social and emotional wellbeing and Indigenous language use varies across language ecologies in Australia.

This research examines relationships between social and emotional wellbeing in various language ecology contexts. Previous studies have shown a correlation between speaking an Indigenous language and improved social and emotional wellbeing among Aboriginal and Torres Strait Islander peoples within the population nationally. This study considers the rich variety of contemporary Indigenous language contexts and the extent to which traditional languages, new contact languages and English are spoken.

Maintaining psychological well-being when living at risk of Huntington's disease: An interpretative phenomenological analysis.

Living at risk of a genetically inherited disease can be a challenging experience causing psychological distress as well as the possibility of the genetic disease leading to physical health problems. Huntington's disease (HD) is a genetic, neurodegenerative condition. It causes motor dysfunction, cognitive decline and, during the progression of the disease, different psychological difficulties are common.

Factors associated with the place of death of persons with advanced dementia: A systematic review of international literature with meta-analysis.

Background: Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementia prevalence.

Experiences of young people growing up in a family with Huntington's disease: A meta-ethnography of qualitative research.

Huntington's disease is a genetic neurodegenerative condition with wide physical and psychological impacts. Children of a parent with the condition have a 50% chance of carrying the gene expansion and developing the condition themselves. This systematic review and meta-ethnography presents a synthesis of the qualitative research on the experiences of young people growing up in a family with Huntington's disease.

Predictors of Improvement in Parental Stress After the First Three Months at Home with a Medically Fragile Infant.

Objectives: Little is known about the early stress experiences of parents of infants with serious life-limiting/life-threatening conditions during the initial months after discharge from hospital. The aim of the study was to measure change, and predictors of change, in parenting stress at the time of transition from hospital to home (T1) with a medically fragile infant, and after a 3-month period (T2).

Methods: Parents of infants identified as meeting ≥ 1 palliative care referral criterion were recruited in a Midwestern United States tertiary pediatric hospital (2012-2014) within 2 weeks of hospital discharge.

Living with Parkinson's in England during and beyond COVID-19 restrictions: a longitudinal qualitative study.

Objectives: Government-enforced lockdown restrictions associated with preventing the spread of the COVID-19 virus had a series of unintended, negative effects. One group of individuals whose physical and mental health was significantly and disproportionately impacted were those with Parkinson's. However, research has been mainly cross-sectional, with no previous study qualitatively following up participants through both lockdowns and the easing of restrictions.

Guided self-help for anxiety among Huntington's disease gene expansion carriers (GUIDE-HD) compared to treatment as usual: a randomised controlled feasibility trial.

Background: Huntington's disease (HD) is an adult-onset genetic neurodegenerative condition associated with cognitive decline, motor impairments, and emotional difficulties. Anxiety affects up to 71% of HD gene expansion carriers (i.e.

The joint impact of symptom deterioration and social factors on wellbeing for people with Parkinson's during the covid-19 pandemic in the UK.

The covid-19 pandemic and associated restrictions have had significant consequences for those living with chronic conditions such as Parkinson's. The restrictions in access to healthcare as well as reductions in social care, family support and community activities have led to decreases in physical and mental wellbeing. However, not everyone has been equally affected and the predictors of distress are currently being investigated worldwide.

Improving paramedic responses for patients dying at home: a theory of change-based approach.

Background: Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully specified theoretical model.

"I Feel Like I Work Full-Time for Parkinson's": A Longitudinal Interpretative Phenomenological Analysis of the Experiences of Parkinson's Informal Caregivers during COVID-19 in England.

While the direct effects of COVID-19 caused widespread global suffering and death, the indirect impacts-via public health preventative measures and a reduction in health and social care services-were also devastating for many. More recently, it has also become increasingly apparent that such measures have had disproportionate effects, exacerbating existing health inequalities. For caregivers of individuals with chronic illness, the effects have been marked and particularly so for informal caregivers of individuals with complex neurodegenerative conditions such as Parkinson's.

Neurologists' lived experiences of communicating the diagnosis of a motor neurodegenerative condition: an interpretative phenomenological analysis.

Background: Receiving the diagnosis of a motor neurodegenerative condition (MNDC) can be a life-changing experience. Although several studies of individuals' experiences have indicated dissatisfaction with aspects of how an MNDC diagnosis was communicated, few studies have addressed doctors' experiences of breaking bad news for these conditions, especially from a qualitative perspective. This study explored UK neurologists' lived experience of delivering an MNDC diagnosis.

Disparities in Utilization of Palliative Care in Patients Experiencing Homelessness.

Background: Patients experiencing homelessness have increased disease burden, increased severity of illness, and increased barriers to accessing care. The provision of high-quality palliative care is therefore essential for this population. State of Homelessness: 18 out of every 10,000 people in the US and 10 out of every 10,000 Rhode Islanders (down from 12 in 2010) experience homelessness.

Perceived control as a predictor of medication adherence in people with Parkinson's: a large-scale cross-sectional study.

Purpose: Medication adherence is a multi-faceted construct associated with several positive consequences in people with chronic conditions. However, non-adherence currently represents a major issue in Parkinson's, potentially due to low perceptions of control. This study investigated the predictive ability of several aspects of perceived control on adherence in people with Parkinson's, while accounting for previously established predictors such as depression and medication variables.

Psychosocial interventions affecting global perceptions of control in people with Parkinson's disease: a scoping review.

Purpose: Perceived control is an important construct for the psychological well-being of people affected by chronic conditions, and higher perceived control is associated with better outcomes. Psychosocial interventions have been trialled in these populations to improve both global and specific perceptions of control. However, most interventions involving people with Parkinson's have focused on single-domain forms of control, while those addressing global perceived control are yet to be reviewed.

Utilization of Palliative Care in Veterans Admitted With Heart Failure Experiencing Homelessness.

Context: Patients experiencing housing insecurity have numerous barriers affecting their utilization of medical care.

Objectives: Determine if housing insecurity is associated with palliative care (PC) encounters and hospice services in patients with heart failure who receive care in United States Veterans Affairs (VA) medical centers.

Methods: This retrospective study included inpatients in VA hospitals with a primary diagnosis of congestive heart failure from 2010 to 2020.

Using a Clinical Formulation to Understand Psychological Distress in People Affected by Huntington's Disease: A Descriptive, Evidence-Based Model.

Huntington's disease (HD) is an inherited, life-limiting neurodegenerative condition. People with HD experience changes in cognitive, motor and emotional functioning, and can also, mainly at later stages, exhibit behaviours that professionals and carers might find distressing such as hitting others, throwing objects, swearing or making inappropriate comments. While clinical formulation (an individualised approach used by mental health professionals to describe an individual's difficulties) is a helpful tool to conceptualise patients' wellbeing, a specific formulation framework has not yet been developed for HD.

Third wave cognitive behavioural therapies for people with multiple sclerosis: a scoping review.

Purpose: Multiple sclerosis (MS) is a chronic condition linked to a wide range of psychological difficulties. While traditional cognitive behavioural therapy has been studied extensively with people with MS, much less is known about more recent "third wave" approaches.

Methods: A scoping review was carried out by performing a systematic search across MEDLINE Complete, PsycINFO, CINAHL, Academic Search Ultimate, and Cochrane Library up to January 2022.

Stigma, self-compassion, and psychological distress among people with Parkinson's.

Purpose: People with Parkinson's disease (hereafter Parkinson's) can experience stigma through the attitudes and actions of others (enacted stigma) and through anticipation of enacted stigma and internalisation of negative stereotypes (felt stigma). Self-compassion may protect against the impact of stigma. This study aimed to investigate the relationships between self-compassion, stigma, and psychological distress among people with Parkinson's.

The experience of hospitalization in people with advanced chronic obstructive pulmonary disease: A qualitative, phenomenological study.

Objectives: People with advanced chronic obstructive pulmonary disease (COPD) are frequently hospitalized, reporting high physical, psychological and spiritual suffering. Existing research focused on discrete aspects of hospitalization, such as care or treatment, yet lacks a complete picture of the phenomenon. The aim of this study is to understand the lived experience of hospitalization in people with advanced COPD.

More than Just a Brain Disorder: A Five-Point Manifesto for Psychological Care for People with Huntington's Disease.

Huntington's disease (HD) is a rare and complex condition where affected individuals, family members, caregivers, and clinicians face a number of both long-term and fluctuating challenges. The predominant biomedical framework adopted in HD to date has traditionally viewed it as a brain disorder first and foremost. As a consequence, one of the most challenging aspects of the condition-psychological difficulties and their care-is often not given the emphasis it deserves in everyday clinical practice.