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Journal article

The hidden cost of informal care: An empirical study on female caregivers' subjective well-being

Using data from the China Health and Nutrition Survey (CHNS), this study investigated the impact of informal care on female caregivers' subjective well-being in China. We found that informal care significantly reduced the subjective well-being of female caregivers using the instrumental variable (IV) ordered probit model. Our results revealed that the care effect on subjective well-being was more significant for rural caregivers than for urban caregivers. The more hours or more recipients care was provided for, the greater the negative impact on subjective well-being.

Mon, 06/10/2019 - 14:53

Identification of Sexual Disinhibition in Dementia by Family Caregivers

Purpose: Sexual disinhibition in dementia is understudied and discrepant frequency rates are reported. Measures designed to capture general disinhibition may under-identify sexual disinhibition, and lack of assessment uniformity may contribute to inconsistent endorsement.

Mon, 06/10/2019 - 14:46

Development of the Family Stigma Stress Scale (FSSS) for Detecting Stigma Stress in Caregivers of People With Mental Illness

People with mental illness and their family caregivers often perceive public stigma, which may lead to stigma-related stress (or stigma stress). However, no instruments have been developed to measure this stress for family caregivers of people with mental illness. We modified an instrument that measures the stigma stress of people with mental illness (i.e., the cognitive appraisal of stigma as a stressor) and examined the psychometric properties of the scores of the newly developed instrument: the Family Stigma Stress Scale (FSSS).

Mon, 06/10/2019 - 14:39

Crossing, Trudging and Settling: A phenomenological inquiry into lived experience of Asian family caregivers of older persons with dementia

Throughout Asian societies, family members often adopt the role of caregiving for older persons, providing essential care for loved ones with dementia. To date, there has been limited insight into the lived experience and meaning ascribed to the journey of these caregivers. This descriptive phenomenological study aims to explore the lived experience of Asian family caregivers of persons with dementia. Semi-structured face-to-face interviews were conducted with 16 family members caring for aged persons with dementia.

Mon, 06/10/2019 - 14:34

Seeing the collective: family arrangements for care at home for older people with dementia

With the predicted growth in the number of people with dementia living at home across the globe, the need for home-based care is expected to increase. As such, it will be primarily family carers who will provide this crucial support to family members. Designing appropriate support for family carers is thus essential to minimise risks to their health, to prevent premature institutionalisation or poor care for persons with dementia, as well as to sustain the effective functioning of health and social care systems.

Mon, 06/10/2019 - 14:29

Acceptance and identity change: An interpretative phenomenological analysis of carers' experiences in myalgic encephalopathy/chronic fatigue syndrome

Myalgic encephalopathy/chronic fatigue syndrome is a debilitating condition and many people rely heavily on family carers. This study explored the caring experiences of seven family carers. Four themes were established: relations with others, role and identity changes, coping with change and uncertainty, and information and support seeking. Caring disrupted multiple areas of carers' lives, including their identities and relationships. Scepticism from others about myalgic encephalopathy/chronic fatigue syndrome was particularly distressing.

Mon, 06/10/2019 - 14:24

Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services.

Mon, 06/10/2019 - 14:20

Telling a 'good or white lie': The views of people living with dementia and their carers

Objective: A common symptom of cognitive decline in people living with dementia, or people with memory problems, the cause of which has not yet been diagnosed, is the person repeatedly asking for loved ones who are deceased or making statements that are incorrect. Carers are then faced with a dilemma, do they avoid and distract or 'correct' the person and tell the 'truth', or tell a lie.

Mon, 06/10/2019 - 14:14

We Are Caregivers: Social Identity Is Associated with Lower Perceived Stress among Rural Informal Caregivers

Informal caregivers often experience high stress levels with little support, especially in rural settings. With a mixed-methods approach, this research explored experiences of rural informal caregivers, including how social identification as a caregiver, social interactions, and formal and informal coping support related to perceived stress. Major focus group themes (n = 8) included lacking available services, balancing challenges, unmet practical needs, and strong community identity.

Mon, 06/10/2019 - 14:04

The Development of Two New Computer Adaptive Tests To Evaluate Feelings of Loss in Caregivers of Individuals With Traumatic Brain Injury: TBI-CareQOL Feelings of Loss-Self and Feelings of Loss-Person With Traumatic Brain Injury

Objective To develop new patient-reported outcome (PRO) measures to better understand feelings of loss in caregivers of individuals with traumatic brain injury (TBI). Design Cross-sectional survey study. Setting Three TBI Model Systems rehabilitation hospitals, an academic medical center, and a military medical treatment facility. Participants Caregivers (N=560) of civilians with TBI (n=344) or service members/veterans (SMVs) with TBI (n=216). Interventions Not applicable.

Mon, 06/10/2019 - 13:49