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Journal article

Informal carers' experiences of caring for someone with Multiple Sclerosis: A photovoice investigation

Objectives: This study explores the lived experiences of carers of people with Multiple Sclerosis (MS), specifically in relation to their quality of life (QoL), through the use of images and narratives, with the aim of gaining a nuanced insight into the complex nature of QoL in the MS caregiving context.; Design: Real-time qualitative design using the photovoice method.; Methods: Twelve MS carers (aged 30-73 years) took photographs of objects/places/events that represented enhancement or compromise to their QoL and composed written narrativ

Fri, 07/23/2021 - 16:37

Caregiving burden among informal caregivers of African American cancer survivors

Purpose Relatively little is known about caregivers of African American cancer survivors. Our goal was to identify the extent of burden among this group of caregivers. Methods Responses from 560 informal caregivers of African American participants of the Research on Cancer Survivors (ROCS) study in Detroit, MI, were analyzed including demographics, assistance provided including activities of daily living (ADLs) and instrumental activities of daily living (IADLs), time spent in caregiving, and caregiver burden (CGB).

Fri, 07/23/2021 - 16:31

Experience as an Informal Caregiver and Discussions Regarding Advance Care Planning in Japan

Context: Advance care planning (ACP) is vital for end-of-life care management. Experiences as informal family caregivers might act as a catalyst to promote ACP.; Objectives: We investigated the association between ACP discussions and caregiving experiences.; Methods: A nationwide survey in Japan was conducted in December 2016 using a quota sampling method to select a sample representative of the general Japanese population. The responses of 3167 individuals aged 20-84 years (mean age: 50.9 ± 16.8) were analyzed.

Fri, 07/23/2021 - 16:18

Gaps in end-of-life care and lack of support for family carers in Poland and Central Eastern Europe

The growth of life expectancy in Central Eastern Europe and increase in the number of older people in that region are the consequences of changes in the 1990s period, connected to transition from the communism into a market economy. Central Eastern Europe is already facing consequences of fast ageing and insufficient development of state health care and social services. Those result in gaps in the provision of end-of-life care and overburden of family caregivers.

Fri, 07/23/2021 - 16:10

"Home wasn't really home anymore": Understanding caregivers' perspectives of the impact of blood cancer caregiving on the family system

Purpose Research on the impact of family cancer caregiving is primarily dyadic in focus. How caregiving affects the larger family system is less understood, yet knowing this is vital to developing supportive resources for caregivers, patients, and their families. To better understand how blood cancer caregiving impacts the family system, we explored the experiences of adult child caregivers of diagnosed parents and parent caregivers of diagnosed children.

Fri, 07/23/2021 - 15:53

Journal of Advanced Nursing

Aim To assess the effects of family nursing conversations on family caregiver burden, patients' quality of life, family functioning and the amount of professional home health care. Design A controlled before-and-after design. Methods Intervention group families participated in two family nursing conversations incorporated in home health care; control group families received usual home health care.

Fri, 07/23/2021 - 15:46

Validation of the Hungarian version of the CarerQol instrument in informal caregivers: results from a cross-sectional survey among the general population in Hungary

Purpose: The CarerQol instrument has been designed and validated as an instrument able to measure both the positive and the negative impacts of caregiving on the quality of life of informal caregivers (CarerQol-7D), as well as their general happiness (CarerQol-VAS). The aim of this study was to assess the construct validity of the CarerQol in the Hungarian context.; Methods: The CarerQol was translated into Hungarian.

Fri, 07/23/2021 - 15:37

Rethinking Care Ethics: On the Promise and Potential of an Intersectional Analysis

This article contributes to current debates and discussions in critical social theory about diversity, inclusion/exclusion, power, and social justice by exploring intersectionality as an important theoretical resource to further develop and advance care ethics. Using intersectionality as a critical reference point, the investigation highlights two key shortcomings of care ethics which stem from this ethics’ prioritization of gender and gendered power relations: inadequate conceptualizations of diversity and power.

Fri, 07/23/2021 - 15:28

Quality of Life and Well-being of Carers of People With Dementia: Are There Differences Between Working and Nonworking Carers? Results From the IDEAL Program

The aim of this study was to identify the differences in quality of life (QoL) and well-being between working and nonworking dementia carers and the relative contribution of psychological characteristics, caregiving experience, and social support. Multiple regressions modeled the contribution of working status, caregiver experiences, and psychological and social resources to carer QoL (EQ-5D) and well-being (WHO-5). After controlling for age, gender, carer–dyad relationship, and severity of dementia, working status contributed significant variance to EQ-5D (2%) but not to WHO-5 scores.

Fri, 07/23/2021 - 15:11

Social welfare needs of bereaved Australian carers: Implications of insights from palliative care and welfare workers

An individual and psychological emphasis has influenced practice and research on bereavement following informal care provision in the context of life-limiting illness. Consideration of the potential for bereavement to be shaped by intersecting social and structural inequities is needed; and should include an understanding of interactions with government institutions and social policy.

Fri, 07/23/2021 - 15:03