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Mary Ann Liebert

Caregiver Burden among Informal Caregivers in the Kerala Palliative Care Program: Development and Validation of the Achutha Menon Centre-Caregiver Burden Inventory

Background: Family caregivers of bedridden or homebound patients are at risk of adverse physical and psychological outcomes. There is a need for a culturally adapted and valid instrument for measuring caregiver burden in palliative care programs. Objective: To develop a reliable and valid instrument to measure the self-perceived burden of informal caregivers of patients with serious health-related suffering. Design/Setting: "Caregiver burden" was conceptualized based on literature review and in-depth interviews.

Wed, 01/19/2022 - 15:21

Creating a Seat at the Table: How Family Meetings Elucidate the Palliative Care Social Work Role

Background: Palliative care social workers (PCSWs) play a crucial role in optimizing communication and family-centered care for seriously ill patients. However, PCSWs often struggle to demonstrate and receive open acknowledgment of their essential skill set within medical teams.

Fri, 03/19/2021 - 10:45

Race/Ethnicity and Informal Caregiver Burden After Traumatic Brain Injury: A Scoping Study

Background: Informal caregivers for persons with traumatic brain injury (TBI) face a range of unique issues, and racial/ethnic group differences in caregiver challenges are poorly understood. We undertook a scoping study of peer-reviewed literature to assess the quantity and quality of available research describing differences by race/ethnicity in informal caregiving roles and burden.

Sat, 01/23/2021 - 16:00

What Are the Factors Identifying Caregivers Who Need Help in Managing Medications for Palliative Care Patients at Home? A Population Survey

Background: For most people, the last 12 months of life are spent living in the community, with the support of family and friends for a number of caregiving functions. Previous research has found that managing medicines is challenging for caregivers. Currently there is little information describing which caregivers may struggle with tasks associated with managing a loved one's medicines. Aim: The aim of this study was to identify factors that flag caregivers who are likely to experience problems when managing someone else's medications.

Fri, 01/22/2021 - 15:44

The Last Day Narratives: An Exploration of the End of Life for Patients with Cancer from a Caregivers' Perspective

Background: Surviving family caregivers describe the end-of-life experience as "very distressing" and half of those surveyed indicate inadequate emotional support; however, little is known about the causes of distress on the last day of life. Objective: The purpose of this study was to explore the experience of the last day of life from the perspective of the surviving caregiver. Design: The study used a narrative inquiry approach.

Fri, 12/11/2020 - 14:19

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

Gender Differences in the Associations Between Informal Caregiving and Wellbeing in Low- and Middle-Income Countries

Background: Health risks among informal caregivers have received inadequate attention in low and middle income countries. We examined cross-sectional data from 28611 adults 18 years and older in Ghana, India, Mexico, Russia and South Africa in the WHO Study on Global AGEing and Adult Health (SAGE) to examine gender differences in informal caregiving and wellbeing. Methods: Wellbeing was measured by self-rated health, difficulties with tasks, self-reported and diagnosed depression and anxiety.

Mon, 12/07/2020 - 15:39

Evaluation of a Collaborative Advance Care Planning Intervention among Older Adult Home Health Patients and Their Caregivers

Background: Caregivers are decision stakeholders; yet, few interventions have been developed to help patients and caregivers collaborate on advance care planning (ACP). Objective: To evaluate a theory-based ACP pilot intervention, Deciding Together, to improve decisional quality, readiness, collaboration, and concordance in ACP decisions for older adult home health (HH) patients and caregivers. Design: A one-group, pre- and posttest study using matched questionnaires was conducted.

Thu, 11/26/2020 - 17:27

Alexithymia in Family Caregivers of Advanced Cancer Patients Is Associated with High Personalized Pain Goal Scores: A Pilot Study

Background: Alexithymia, or difficulty identifying and describing emotions and sensations, contributes to an increased risk of chronic pain, and low help-seeking. Objective: To investigate whether family caregivers of advanced cancer patients visiting a palliative care department had alexithymia, and whether this was related to their pain intensity, personalized pain goals, and help-seeking for chronic musculoskeletal pain. Design: A single-center cross-sectional survey.

Tue, 02/04/2020 - 14:51

A Linguistic Model of Communication Types in Palliative Medicine: Effects of Multidrug-Resistant Organisms Colonization or Infection and Isolation Measures in End of Life on Family Caregivers' Knowledge, Attitude, and Practices

Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life. Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted.

Fri, 01/24/2020 - 13:25

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