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Journal article

Information, communication, and online tool needs of Hispanic family caregivers of individuals with Alzheimer’s disease and related dementias

Purpose: To identify the information and communication needs of Hispanic family caregivers for individuals with Alzheimer’s Disease and Related Dementias (ADRD) and the manner in which online tools may meet those needs. Methods: We conducted 11 participatory design sessions with 10 English- and 14 Spanish-speaking urban-dwelling Hispanic family caregivers and gathered data using a survey, collage assemblage, and audio and video recordings.

Thu, 10/10/2019 - 09:40

Investigation on the Status and Determinants of Caregiver Burden on Caring for Patients with Chronic Wound

Objective: To investigate the caring burden and its determinants of primary informal caregiver of patients with chronic wound. Approach: A prospective cross-sectional study of 132 pairs of chronic wound care recipients and their informal caregivers was included. The characteristics of patients and their informal caregivers as well as caregiver burden assessment by the caregiver burden inventory (CBI) were measured.

Wed, 10/09/2019 - 13:55

Projecting future demand for informal care among older people in China : the road towards a sustainable long-term care system

The long-term care system in China relies heavily on informal care provided by family members. This study makes projections on the demand for informal care among Chinese older people between 2015 and 2035 and quantifies the level of long-term care resources needed to meet their needs. The data come from longitudinal information in a nationally representative sample, China Health and Retirement Longitudinal Survey 2011 and 2013. The macrosimulation approach (PSSRU model) and the Markov approach are integrated into one Bayesian modelling framework.

Wed, 10/09/2019 - 13:48

Savouring and psychological well‐being in family dyads coping with cancer: An actor–partner interdependence model

Previous studies have investigated interdependence of the associations between predictors and negative psychological outcomes in dyads of cancer patients and family caregivers. This study examined the dyadic effects of perceived capability of savouring the moment on psychological well‐being. A total of 152 dyads of cancer patients and caregivers reported their perceived capability of savouring the moment (Savoring Beliefs Inventory), state positive affect (Chinese Affect Scale) and life satisfaction (Satisfaction With Life Scale) within 6 months following diagnosis.

Wed, 10/09/2019 - 13:44

DESKK Study - Development and testing of a dementia-specific respite care concept with a mobility and counselling programme: Study protocol

Introduction: Specific mobility programmes can delay functional decline in people with dementia (PwD). Family caregivers (FCs) can be relieved from care-related burden by counselling services. Respite care is a short-term inpatient care service (1-8 weeks of stay). Respite care centres (RCCs) can function as support structures for dementia care arrangements through caring-based mobility training of PwD and counselling sessions for their FCs. However, no systematic mobility or counselling programmes exist in this setting in Germany or the rest of the world.

Wed, 10/09/2019 - 13:36

Making her end of life her own: Further reflections on supporting a loved one with motor neurone disease

Background: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family. Aim: This study aimed to explore the meaning of supporting a loved one with MND to die. Methods: This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying.

Wed, 10/09/2019 - 13:29

Adapting the Resilience Framework for Family Caregivers of Hospice Patients With Dementia

Family caregivers face ongoing, formidable stress and burden. Caregivers need sustainable support to maintain resilience. We aim to identify challenges, possible solutions that are resources for resilience, and expected consequences from the perspective of 39 family caregivers of hospice patients with dementia. The resilience framework was used to guide the coding and synthesis of the qualitative data.

Wed, 10/09/2019 - 13:23

Why and how family caregivers should participate in shared decision making in mental health

Patient involvement (shared decision making ) and caregiver involvement (family involvement, etc.) are mostly seen as different aspects of care, and efforts to integrate them are limited. This Open Forum posits that both approaches are critical and that caregiver involvement should always be considered during shared decision making, potentially as an integral component. The authors argue that the two approaches can overlap and work synergistically rather than antagonistically.

Wed, 10/09/2019 - 13:19

Dementia and patient safety in the community: a qualitative study of family carers' protective practices and implications for services

BACKGROUND: Dementia is a cause of disability and dependency associated with high demands for health services and expected to have a significant impact on resources. Care policies worldwide increasingly rely on family caregivers to contribute to service delivery for older people, and the general direction of health care policy internationally is to provide care in the community, meaning most people will receive services there. Patient safety in primary care is therefore important for future care, but not yet investigated sufficiently when services are carried out in patients' homes.

Wed, 10/09/2019 - 12:59

An Italian pilot study of a psycho-social intervention to support family caregivers' engagement in taking care of patients with complex care needs: The Engage-in-Caring project

Background: The raising of disability and chronic illness burden among European population is calling for a new paradigm of care, focused on primary health care interventions. Engage-In-Caring is a novel multicomponent intervention clearly dedicated to improve family caregiver engagement in the care of patients with complex care needs, by supporting them to develop a stronger consciousness of their role, needs and skills.

Wed, 10/09/2019 - 12:53