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Informal caregivers

Experiences of family caregivers in green care farms and other nursing home environments for people with dementia: a qualitative study

Having a match between a nursing home and the preferences of people with dementia is beneficial for their well-being. It is suggested that innovative types of nursing homes such as small-scale living facilities and green care farms create a better match between their care environment and their residents. However whether this is also reflected into the experiences of informal caregivers is not known. Therefore, this study explores what their positive and negative experiences are with regard to green care farms, other small-scale living facilities, and traditional nursing homes.

Mon, 09/09/2019 - 12:52

Process evaluation of a social support platform ‘Inlife’ for caregivers of people with dementia

Introduction Informal caregivers of persons with dementia have an increased risk of facing social isolation. Online social media interventions might offer a new opportunity to increase access to social support. An online social support platform, ‘Inlife’, was developed and launched in the Netherlands to enhance social support, positive interactions and information sharing in informal support networks. Objective A process evaluation was performed to evaluate the internal and external validity of the Inlife intervention.

Mon, 09/09/2019 - 12:46

How Is the Caregiver Doing? Capturing Caregivers' Experiences With a Reflective Toolkit

Background: This paper describes the Co-Care-KIT, a reflective toolkit designed to provide insights into the diverse experiences of home-based informal caregivers during the delivery of care to a relative or loved one.  Objective: The aim of this study was to evaluate the toolkit, including a custom-designed journal, tools for photography-based experience sampling, and heart rate tracking, which enables caregivers to collect and reflect on their positive and negative daily experiences in situ.

Mon, 09/09/2019 - 11:04

Exploring family stigma among caregivers of persons with Alzheimer's disease: The experiences of Israeli-Arab caregivers

Providing care to persons with Alzheimer's disease poses challenges for spouses and adult children, including experiencing stigmatic beliefs towards themselves—i.e., family stigma. Drawing on the frameworks of ethnicity and stigma and ethnicity and dementia, the current study explored stigmatic experiences among Israeli Arab family caregivers of a person with Alzheimer's disease. Three focus groups with 20 caregivers (adult children and spouses) of persons with Alzheimer's disease were conducted. Data were analyzed using theory-led thematic analysis.

Fri, 09/06/2019 - 13:47

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

A pilot study: Resistive behavior in the context of informal caregiver-assisted activities of daily living

Providing care for people with dementia is difficult when resistive behaviors displayed by people impede caregiving efforts.; Purpose: To examined the frequency of resistive behaviors during informal caregiver-assisted activities of daily living and the impact of these occurrences.; Design: A cross sectional design was used to recruit 17 caregivers from Alzheimer's support group meetings in 2010.; Method: Self-report surveys were used to obtain participants' report of resistive behaviors.; Findings: A positive correlation w

Mon, 07/01/2019 - 16:52

Home Hospice Caregivers' Perceived Information Needs

Background: Although home hospice organizations provide essential care for and support to terminally ill patients, many day-to-day caregiving responsibilities fall to informal (ie, unpaid) caregivers. Studies have shown that caregivers value receiving clear information about end-of-life (EoL) care.

Mon, 07/01/2019 - 15:31

The relationship between perceived social support and depressive symptoms in informal caregivers of community-dwelling older persons in Chile

Aim: Depression among caregivers of older persons is a serious concern, but it is often overlooked and neglected in developing countries. The aim of this study was to examine the relationship between perceived social support and depression in informal caregivers of community-dwelling older persons in Chile.; Methods: We analyzed cross-sectional secondary data on 377 dyads of community-dwelling older persons and their informal caregivers from a nationwide survey in Chile.

Mon, 07/01/2019 - 14:23

Needs and preferences of informal caregivers regarding outpatient care for the elderly: a systematic literature review

Background: Informal caregivers are an essential pillar for ensuring and maintaining the outpatient care of the frail elderly. Due to demographic changes, including an increase in the number of people in need of care as well as changing social structures (full-time employment of women, increasing number of single households, etc.) these informal care structures are fraught by considerable challenges.

Thu, 06/27/2019 - 14:40

Organising Support for Carers of Stroke Survivors (OSCARSS): study protocol for a cluster randomised controlled trial, including health economic analysis

Background: Stroke often results in chronic disability, with partners and family members taking on the role of informal caregiver. There is considerable uncertainty regarding how best to identify and address carers' needs. The Carer Support Needs Assessment Tool (CSNAT) is a carer-led approach to individualised assessment and support for caregiving that may be beneficial in palliative care contexts. CSNAT includes an implementation toolkit.

Wed, 06/26/2019 - 15:27