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quality of life

The Mental Well-Being of Informal Carers of Adults on the Autism Spectrum: a Systematic Review

Carers of autistic adults may experience increased day-to-day stress relating to their caring role. This review aims to (1) summarise the current literature on factors that affect mental well-being in carers of autistic adults and (2) map these results to an existing conceptual model of carer psychological well-being for individuals with developmental disabilities. Twenty-three studies met inclusion criteria. Some factors, such as adaptive skills and the quality of the caring relationship, were consistently associated with carer mental well-being.

Tue, 08/11/2020 - 10:38

Perceptions of the impact of chorea on health-related quality of life in Huntington disease (HD): A qualitative analysis of individuals across the HD spectrum, family members, and clinicians

Chorea, a hallmark symptom of Huntington's disease (HD), is characterized by jerky involuntary movements affecting the whole body that can interfere with daily functioning and impact health-related quality of life (HRQOL). To characterize chorea's impact on everyday functioning and HRQOL and identify patterns of perception and experiences of chorea among patients, caregivers, and providers.

Mon, 08/10/2020 - 15:07

Quality of life among caregivers of people with end-stage kidney disease managed with dialysis or comprehensive conservative care

Background: To measure health-related and care-related quality of life among informal caregivers of older people with end-stage kidney disease (ESKD), and to determine the association between caregiver quality of life and care recipient's treatment type. Methods: A prospective cross-sectional study was conducted. Three renal units in the UK and Australia were included.

Wed, 08/05/2020 - 13:06

Designing and validation of health-related quality of life inventory for family caregivers of hemodialysis patients

Background: Family caregivers are important sources of care for hemodialysis patients. Although caring for a family member is a pleasant feeling, experiencing lots of physical and psychological caregiving burden influences the quality of life among family caregivers of hemodialysis patients. This study aimed to design and validate the quality of life inventory for family caregivers of patients on hemodialysis. Methods: A sequential-exploratory mixed method was conducted in Tehran, Iran, in 2017-2018.

Tue, 08/04/2020 - 15:05

Validation of the caregiver oncology quality of life questionnaire in Portuguese caregivers of myeloma patients

Objective Cancer diagnosis affects patients, their families, and their caregivers in particular. This study focused on the validation of the CareGiver Oncology Quality of Life (CarGOQoL) questionnaire in Portuguese caregivers of patients with multiple myeloma, from the caregiver's point of view. Method This was a cross-sectional study with 146 caregivers of patients with multiple myeloma from outpatient medical oncology and clinical hematology consultations from five hospitals in north and central Portugal.

Tue, 08/04/2020 - 11:47

A Randomized Controlled Trial of Emotion Regulation Therapy for Psychologically Distressed Caregivers of Cancer Patients

Background: Previous cognitive behavioral therapies for informal caregivers (ICs) have produced negligible effects. The purpose of this study was to evaluate, in a randomized controlled trial, the efficacy of Emotion Regulation Therapy adapted for caregivers (ERT-C) on psychological and inflammatory outcomes in psychologically distressed ICs and the cancer patients cared for. Methods: A total of 81 ICs with elevated psychological distress were randomly assigned to ERT-C or a waitlist condition and assessed pre-, mid-, and post-treatment.

Tue, 08/04/2020 - 10:04

Cost-Effectiveness and Effects of a Home-Based Exercise Intervention for Female Caregivers of Relatives with Dementia: Study Protocol for a Randomized Controlled Trial

Previous research has proposed a range of support interventions to mitigate the adverse impact of caregiving on the daily life of caregivers of relatives with dementia. However, the effectiveness of these interventions shows a high variability. Informal caregivers usually lack the time and/or live too far from conventional facilities to do physical exercise, especially those who live in rural areas. Thus, home-based interventions may be more efficacious due to their greater convenience for this population.

Fri, 07/31/2020 - 15:50

Psychological Symptomatology in Informal Caregivers of Persons with Dementia: Influences on Health-Related Quality of Life

Informal caregivers of persons with dementia often report high levels of anxiety, depression and burden. Nonetheless, other less evaluated psychological symptoms might also influence their health-related quality of life (HRQoL). The aim of this study was to comprehensively analyse other psychological symptoms and their influence on the health-related quality of life of informal caregivers. Fifty-four informal women caregivers and fifty-six women non-caregivers were recruited to participate in the study.

Fri, 07/31/2020 - 15:45

A nurse-led health coaching intervention for stroke survivors and their family caregivers in hospital to home transition care in Chongqing, China: a study protocol for a randomized controlled trial

Background Hospital to home transition care is a most stressful period for stroke survivors and their caregivers to learn self-management of stroke-related health conditions and to engage in rehabilitation. Health coaching has been identified as a strategy to enhance self-management of poststroke care at home. However, interventions in this field that are informed by a health coaching framework are scarce.

Thu, 07/30/2020 - 14:21

Anxiety in Informal Dementia Carers: A Meta-Analysis of Prevalence

Much of the carer literature has focused on depression and burden as primary outcomes and anxiety appear somewhat neglected. Providing evidence on the prevalence of carer anxiety is critical as it can enhance awareness among professionals, which in turn can lead to improved access to efficacious treatments. This meta-analysis updated the previous review conducted in 2007 to estimate the up-to-date prevalence of anxiety in informal carers for people with dementia. Literature searches were conducted in databases of published and unpublished literature.

Thu, 07/30/2020 - 11:52

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