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quality of life

How best to assess quality of life in informal carers of people with dementia; A systematic review of existing outcome measures

Background: In the UK, there are currently 800 000 people living with dementia. This number is expected to double in the next 20 years. Two-thirds of people with dementia live in the community supported by informal carers. Caring for a person with dementia has adverse effects on psychological, physical, social wellbeing and quality of life. The measurement of quality of life of carers of people with dementia is increasingly of interest to health and social care practitioners and commissioners, policymakers, and carers themselves.

Thu, 01/31/2019 - 11:08

A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial

Background: Informal caregivers of patients with Amyotrophic Lateral Sclerosis (ALS) or Progressive Muscular Atrophy (PMA) face stressful demands due to severe impairments and prospect of early death of the patients they care for. Caregivers often experience feelings of psychological distress and caregiver burden, but supportive interventions are lacking. The objective of this study is to investigate the effectiveness of a psychosocial support program aimed at enhancing feelings of control over caregiving tasks and reducing psychological distress.

Thu, 01/31/2019 - 10:40

Coping strategies and quality of life: a longitudinal study of high-grade glioma patient-caregiver dyads

Background: Among a sample of patient-informal caregiver dyads in the specific context of new diagnoses of high-grade glioma in the time-frame between diagnosis and the third month following diagnosis, we examine whether the coping strategies implemented by the patients and their caregivers influenced their own quality of life (QoL) and the QoL of their relatives.; Methods: Thirty-eight dyads with patients having recent diagnoses of high-grade glioma were involved in this longitudinal study.

Wed, 01/23/2019 - 14:46

Informal care: choice or constraint?

Background: 'Choice' is increasingly pursued as a goal of social policy. However, the degree to which choice is exercised when entering an informal caring role is open to debate.; Aim: In this study, we examined the degree of choice and constraint in entering a caring role, and the relationship between choice and carers' well-being.; Methods: Data were derived from 1100 responses to a postal survey conducted in a British city.

Tue, 01/22/2019 - 16:29

The effect of informal caregiver support on utilization of acute health services among home care clients: a prospective observational study

Background: Emergency department visits and hospitalizations (EDVH) place a large burden on patients and the health care system. The presence of informal caregivers may be beneficial for reducing EDVH among patients with specific diagnoses.

Tue, 01/22/2019 - 16:07

Biopsychosocial Intervention for Stroke Carers (BISC): protocol for a feasibility randomised controlled trial (RCT)

Introduction: Reducing length of hospital stay for stroke survivors often creates a shift in the responsibility of care towards informal carers. Adjustment to the caregiving process is experienced by many carers as overwhelming, complex and demanding and can have a detrimental impact on mental and physical health and well-being. National policy guidelines recommend that carers' needs are considered and addressed; despite this, few interventions have been developed and empirically evaluated.

Tue, 01/22/2019 - 14:42

Informal caregivers of people with an intellectual disability in England: health, quality of life and impact of caring

There is wide variation in reported impact of caring on caregiver well-being, and often a negative appraisal of caregiving. Researchers are beginning to question the robustness of the evidence base on which negative appraisals are based. The present study aimed to draw on data from a population-representative sample to describe the health, quality of life and impact of caring of informal caregivers of people with an intellectual disability.

Tue, 01/22/2019 - 14:29

Shared decision-making and providing information among newly diagnosed patients with hematological malignancies and their informal caregivers: Not "one-size-fits-all"

Objective: To optimize personalized medicine for patients with hematological malignancies (HM), we find that knowledge on patient preferences with regard to information provision and shared decision-making (SDM) is of the utmost importance.

Tue, 01/22/2019 - 13:24

Perseverance time of informal caregivers for people with dementia: construct validity, responsiveness and predictive validity

Background: Informal care is essential for many people with dementia (PwD), but it often results in a considerable burden for the caregiver. The perseverance time instrument integrates the aspect of perceived burden with the caregiver's capacity to cope with the burden, in contrast to most available instruments, which measure solely the burden of caregiving.

Tue, 01/22/2019 - 11:40

The role of medical/nursing skills training in caregiver confidence and burden: A CanCORS study

Background: Informal cancer caregivers provide essential support to cancer patients, including performing direct medical/nursing tasks, assisting with activities of daily living, and offering social support.

Mon, 01/21/2019 - 15:48

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