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Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians

Chorea, a hallmark symptom of Huntington's disease (HD), is characterized by jerky involuntary movements affecting the whole body that can interfere with daily functioning and impact health-related quality of life (HRQOL). To characterize chorea's impact on everyday functioning and HRQOL and identify patterns of perception and experiences of chorea among patients, caregivers, and providers.

Mon, 08/10/2020 - 15:07

Identifying Outcomes Important to Patients with Glomerular Disease and Their Caregivers

BACKGROUND AND OBJECTIVES: Shared decision making in patients with glomerular disease remains challenging because outcomes important to patients remain largely unknown. We aimed to identify and prioritize outcomes important to patients and caregivers and to describe reasons for their choices. DESIGN: , setting, participants, & measurementsWe purposively sampled adult patients with glomerular disease and their caregivers from Australia, Hong Kong, the United Kingdom, and the United States.

Mon, 07/13/2020 - 13:13

Using focus groups to explore caregiver transitions and needs after placement of family members living with dementia in 24-hour care homes

Objectives: Family caregivers (defined broadly as family and friends) of persons with dementia are challenged to cope with myriad stressors and changes that occur along the dementia trajectory. The purpose of this study was to explore the transitions experienced by caregivers of persons with dementia after their relative relocated to a 24-hour care home.

Wed, 02/26/2020 - 15:14

Lung cancer and family-centered concerns

Background: Genetic and environmental interactions predispose certain groups to lung cancer, including families. Families or caregiving units experience the disease interdependently. We have previously evaluated the concerns and preferences of patients in addressing the lung cancer experience and cancer risks in their families.

Mon, 02/17/2020 - 14:09

Implementing Caregiver Support Programs in a Regional Stroke System

Background and Purpose- Family caregivers play a central role in the recovery of people with stroke. They need support to optimize the care they provide and their own health and well-being. Despite support from the literature and best practice recommendations, healthcare systems are not formally adopting caregiver programs. This study aimed to describe system-level facilitators and barriers to caregiver support program implementation in a regional stroke system.

Fri, 01/24/2020 - 11:44

Development and Implementation of the Family Caregiver Decision Guide

Care provided by family is the backbone of palliative care in Canada. The critical roles performed by caregivers can at the same time be intensely meaningful and intensely stressful. However, experiences of caregiving can be enhanced when caregivers feel they are making informed and reflective decisions about the options available to them. With this in mind, the purpose of this five-phase research project was to create a Family Caregiver Decision Guide (FCDG).

Wed, 01/22/2020 - 16:13

The care crisis in Spain: an analysis of the family care situation in mental health from a professional psychosocial perspective

The aim of this article is to investigate the importance of family care in mental health and identify the shortcomings of the Spanish model of health care for the mentally ill. The empirical process comprised three qualitative procedures involving 37 experts from different regions of Spain. In order to guarantee the rigor of the data, a social worker discussion group was set up to create an interview script. Interviews were then carried out with 22 professionals who take care of people with mental illness in various public facilities throughout the country.

Mon, 01/13/2020 - 15:37

The use of carer perspectives and expert consensus to define key components of a biopsychosocial support intervention for stroke carers

Objective: To identify the key components of a biopsychosocial support intervention to improve mental wellbeing for informal stroke carers within the first year post-stroke based on the combined perspectives of experts in the field of psychological care after stroke and informal stroke carers themselves.

Mon, 09/09/2019 - 12:29

Social consequences of advanced cancer in patients and their informal caregivers: a qualitative study

Purpose: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.; Methods: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted.

Tue, 07/02/2019 - 15:55

Quality of Life on the Views of Older Family Carers of People with Dementia

Older family carers of people with dementia represent an increasing but overlooked population of family carers. This research aimed to explore how these individuals make sense of their own quality of life and to identify the factors that enhance or compromise this. Four focus groups were conducted in 2014 with 19 older family carers in community-based support groups in Nottinghamshire, United Kingdom. Data were transcribed verbatim and analysed using Interpretative Phenomenological Analysis.

Wed, 06/26/2019 - 13:48