Symptoms

Objective: Black Americans are disproportionately affected by cancer and chronic diseases. Black patients with cancer and their family caregivers may concurrently experience symptoms that influence their wellbeing. This study investigates the influence of mental and physical symptom distress on quality of life (QOL) among Black Americans with cancer and their family caregivers from a dyadic perspective.

Background and Objective: Research has documented the stigma that individuals with degenerative neurological diseases experience, but caregivers also experience stigma by association (i.e., affiliate stigma). In order to shed light on the stigma of caregivers of people with degenerative neurological diseases, the current study aimed to explore cross-cultural differences in the prevalence of Parkinson’s disease (PD) caregiver affiliate stigma, as well as the relationship between PD symptoms and caregiver affiliate stigma. Applications for Alzheimer’s disease are discussed.

Background: An often-stated concern is that dying persons receive too much aggressive medical care. Objective: Examine next-of-kin perceptions of the amount of medical care received in the last month of life. Design: Mixed-methods study with 623 survey responses and in-depth interviews with a subsample of 17 respondents. Subjects: Nontraumatic deaths 18 years and older in San Francisco Bay area.

Objectives Describe the use of a Symptom Assessment (SA) Toolkit designed to support in-home caregivers of homebound older adults with serious illness. Explore next steps in evaluation and dissemination of the Toolkit. Importance. Many older adults with serious illness who depend on others for care have symptoms that are difficult to manage. Supporting in-home caregivers in symptom assessment (SA) may improve suffering among older adults. Objective(s). To test the feasibility of a SA-Toolkit for caregivers to assess and track older adults' symptoms.

Background: Most symptom management takes place in the community, conducted by patient and/or informal carer dyads with guidance from clinicians.

Background: Family caregivers of post-stroke patients face many challenges that may result in depressive symptoms and ineffective care performance. This generates a negative correlation spiral related to the quality of life for both family caregivers and patients. Examining factors related to depressive symptoms among family caregivers is necessary to develop effective care and education programs.

Rationale: Little direction exists on how to integrate early palliative care in chronic obstructive pulmonary disease (COPD).Objectives: We sought to identify patient and family caregiver early palliative care needs across stages of COPD severity. Methods: As part of the Medical Research Council Framework developmental phase for intervention development, we conducted a formative evaluation of patients with moderate to very severe COPD (forced expiratory volume in 1 s [FEV1]/FVC < 70% and FEV1 < 80%-predicted) and their family caregivers.

The longitudinal association of changes in clinical status among adults with schizophrenia and changes in family caregiver burden has not been demonstrated. Using data from the NIMH-funded CATIE schizophrenia trial (n = 446 family caregivers), we examined the association of changes in patient symptoms and quality of life with changes in measures of family caregiver burden. Clinical changes in patient symptoms and quality of life were not significantly associated with changes in family caregiver burden.

Background: Heart failure (HF) is a common clinical syndrome, particularly in older people, and symptoms can develop gradually. The aim of this study was to explore the role of informal carers in the HF diagnostic process.; Methods: Secondary analysis of qualitative interviews with 16 participants with a new diagnosis of HF. Original interviews were conducted in the participant's home, with carers present in some cases.

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic.