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Journal article

"It's Like a Death Sentence but It Really Isn't" What Patients and Families Want to Know About Hospice Care When Making End-of-Life Decisions

Background: Hospice is underutilized, due to both lack of initiation from patients and late referral from clinicians. Prior research has suggested the reasons for underuse are multifactorial, including clinician and patient lack of understanding, misperceptions about the nature of hospice care, and poor communication during end-of-life discussions about hospice care. Little is known about the decisional needs of patients and families engaging in hospice decision-making.

Fri, 12/11/2020 - 14:00

"It's Feasible to Write a Song": A Feasibility Study Examining Group Therapeutic Songwriting for People Living With Dementia and Their Family Caregivers

Background: Psychosocial interventions for people with dementia and their family caregivers together may sustain relationship quality and social connection.

Fri, 12/11/2020 - 13:56

“It’s a disease of families”: Neurologists’ insights on how to improve communication and quality of life for families of Parkinson’s disease patients

Objectives Parkinson’s disease presents an evolving challenge for patients and families due to an unpredictable disease trajectory and symptoms that complicate social interactions. In this study, we explore neurologists’ perspectives on the challenges Parkinson’s disease presents for families and the strategies they use to improve communication and quality of life.

Fri, 12/11/2020 - 13:51

Investigating the Smoking Cessation Informational Needs of Cancer Patients and Informal Caregivers

Continued smoking at the time of a cancer diagnosis can severely impact the efficacy of cancer patient treatment and survival. The time of diagnosis can serve as a "teachable moment" for smoking cessation education, since patients may be receptive to discussions about quitting. Caregivers may have a pivotal role in supporting patients with their cessation efforts. The purpose of this study was to identify the smoking cessation informational needs of cancer patients and their caregivers.

Fri, 12/11/2020 - 13:42

Investigating the needs of family caregivers of older stroke patients: a longitudinal study in Iran

Background: The high burden of care associated with older stroke patients is a factor that threatens the health of family caregivers. Identifying the needs of family caregivers in this group of patients can help provide effective solutions. The present study aimed to determine the needs of family caregivers of older stroke patients. Methods: The sample size of this longitudinal study included 200 family caregivers of older stroke patients from two hospitals in Iran.

Fri, 12/11/2020 - 13:38

An integrative group movement program for people with dementia and care partners together (Paired PLIÉ): initial process evaluation

Objectives: To understand feedback from participants in Paired PLIÉ (Preventing Loss of Independence through Exercise), a novel, integrative group movement program for people with dementia and their care partners, in order to refine the intervention and study procedures. Method: Data sources included daily logs from the first Paired PLIÉ RCT group, final reflections from the second Paired PLIÉ RCT group, and responses to requests for feedback and letters of support from Paired PLIÉ community class participants. All data are reports from care partners.

Fri, 12/11/2020 - 13:12

Insomnia and changes in alcohol consumption: Relation between possible complicated grief and depression among bereaved family caregivers

Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.

Fri, 12/11/2020 - 12:43

Insights from Bereaved Family Members about End-of-Life Care and Bereavement

Background: Bereavement programs provide institutions with an avenue for obtaining feedback from family members about their experiences during a patient's illness and end-of-life (EOL) period that can be used to improve both patient care and the care of bereaved individuals. Objective: We examined family members' experiences about the clinical care their loved one received at EOL and the perceived effect this care had on their subsequent bereavement. Design: Survey.

Fri, 12/11/2020 - 12:38

Information Seeking Experiences of Family Caregivers of Patients with Persistent Vegetative State: A Qualitative Study

Background: Providing care for patients in Persistent Vegetative State (PVS) by family caregivers without enough training and knowledge may be problematic both for the patients and for the caregivers. Therefore, the present study tries to explain the experiences of family caregivers of patients with PVS of seeking information needed to provide adequate care.

Fri, 12/11/2020 - 12:33

Information seeking behavior and perceived health literacy of family caregivers of persons living with a chronic condition. The case of spinal cord injury in Switzerland

Objective: To examine the information seeking behavior and health literacy of caregivers of individuals living with spinal cord injury in Switzerland and their impact on the caregiving experience. Methods: Nationwide survey of family caregivers of people with spinal cord injury (N = 717). Caregivers aged 18+ who assisted with activities of daily living were included. Self-reported information seeking behavior, including topics, preferred sources, and health literacy were assessed and analyzed.

Fri, 12/11/2020 - 12:29