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Effects of a Telehealth Early Palliative Care Intervention for Family Caregivers of Persons With Advanced Heart Failure: The ENABLE CHF-PC Randomized Clinical Trial

Importance: Family caregivers of persons with advanced heart failure perform numerous daily tasks to assist their relatives and are at high risk for distress and poor quality of life. Objective: To determine the effect of a nurse-led palliative care telehealth intervention (Educate, Nurture, Advise, Before Life Ends Comprehensive Heart Failure for Patients and Caregivers [ENABLE CHF-PC]) on quality of life and mood of family caregivers of persons with New York Heart Association Class III/IV heart failure over 16 weeks.

Tue, 07/14/2020 - 18:25

Design and Preliminary Testing of the Caregiver-Centered Communication Questionnaire (CCCQ)

The study objective was to develop and test a new survey instrument that measures caregiver-centered communication. We developed a questionnaire inspired by the National Cancer Institute framework on patient-centered communication, focusing on family caregiver communication for this tool. The questionnaire includes 5 subscales: exchange of information, relationship with team, emotions, managing care, and decision-making. The initial questionnaire was reviewed by domain experts for face validity and edited further to include 30 items.

Tue, 07/14/2020 - 18:13

Caregiving and bereavement in palliative care: A cross-cultural study between Brazil and Portugal

Caregiving and bereavement outcomes are strongly influenced by socio-cultural context. Past research has found higher levels of caregiver burden and psychological morbidity in Portuguese compared to Brazilian caregivers. This study compared Brazilian and Portuguese family caregivers in palliative care to identify differences in psychological morbidity and caregiver burden and their relationship with psychosocial factors such as sociodemographic variables, circumstances of end-of-life care and dying, social support, family functioning, and perception of quality of care.

Tue, 07/14/2020 - 18:07

The Quality of Life as a Predictor of Social Support for Multiple Sclerosis Patients and Caregivers

BACKGROUND: Coping with a diagnosis of multiple sclerosis (MS) is challenging. MS is one of the most common causes of nontraumatic disability in young adults, and patients may need assistance with daily life activities. This article explores the relation between quality of life (QOL) and the perceived available social support among patients with MS and their families. METHODS: The study included 120 subjects (60 patient-caregiver dyads). The average age of the patients was 53.95 ± 10.19 years, and for caregivers, it was 50.8 ± 13.3 years.

Tue, 07/14/2020 - 18:01

Care and the shadow of the fourth age: how does home care get caught up in it and how does it stay away from it?

This article examines how care encounters at the elders' homes are forged, and how the way these encounters are forged avoids or evokes the social imaginary of the fourth age. Data were gathered in Portugal from elders receiving home care (16 cases), their care workers (eight cases) and family carers (six cases), through participant observation and informal conversations (conducted at the elders' homes), as well as focus groups. The collected data were analysed according to the procedures of Framework Analysis.

Tue, 07/14/2020 - 17:52

Factors associated with quality of life in the perspective of the elderly caregiver with Alzheimer's disease

This study aimed to know the factors associated with quality of life (QOL) of elderly caregivers diagnosed with Alzheimer's disease from the perspective of these individuals. It was a descriptive study with qualitative approach based on the Collective Subject Discourse method. Twenty elderly caregivers diagnosed with Alzheimer's disease participated, during a month, in the period the month September 18 to October 18, 2017. Data collection was done through interviews with caregivers of elderly with Alzheimer's disease.

Tue, 07/14/2020 - 17:46

Support needs and health-related quality of life of family caregivers of patients requiring prolonged mechanical ventilation and admission to a specialised weaning centre: A qualitative longitudinal interview study

Objectives: Family caregivers of patients requiring prolonged mechanical ventilation may experience physical and psychological morbidity associated with a protracted intensive care unit experience. Our aim was to explore potentially modifiable support needs and care processes of importance to family caregivers of patients requiring prolonged mechanical ventilation and transition from the intensive care unit to a specialised weaning centre. Research methodology/design: A longitudinal qualitative descriptive interview study.

Tue, 07/14/2020 - 17:35

Adaptation and Validation of the Capacity Scale for Informal Caregivers of Elderly Stroke Patients to be Used in Brazil

Background and Purpose: The Portuguese instrument for informal caregivers' skills providing care of aged people after a stroke (ECPICID-AVC) evaluates the capacities that informal caregivers must have for supporting aged stroke survivors. The purpose was to adapt and validate the ECPICID-AVC to be used in Brazil. Methods: A methodological study was conducted. Results: The terms with the lowest degree of comprehension were adapted. The factor analysis suggested the exclusion of three items and that the remaining be grouped into six domains.

Tue, 07/14/2020 - 16:39

Factors associated with suicidal ideation in caregivers of stroke survivors

Objective: to identify factors associated with the presence of suicidal ideation in caregivers of stroke survivors. Methods: cross-sectional survey conducted with 151 primary informal caregivers. The Depression Anxiety and Stress Scale-21 and a questionnaire were used to evaluate the presence of thoughts of suicidal ideation, whose data were analyzed by descriptive and inferential statistics.

Tue, 07/14/2020 - 16:32

I’ll Be a Caregiver-Employee: Aging of the Workforce and Family-to-Work Conflicts

Background: The double role of caregiver-employee (CE) defines those workers who simultaneously serve as an informal, unpaid care provider for sick, disabled, or elderly relatives, and it is a situation that is on the increase in most western countries. Providing informal caregiving can lead to detrimental effects on emotional well-being and several physical and psychological diseases (e.g., caregiver-burden). CEs can suffer double discomfort (at work and at home), but, first of all, they can be exposed to a high level of home-to-work conflict (HWI).

Tue, 07/14/2020 - 16:19