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Journal article

Informal care and sleep disturbance among caregivers in paid work: Longitudinal analyses from a large community-based Swedish cohort study

Study objectives: To examine cross-sectionally and prospectively whether informal caregiving is related to sleep disturbance among caregivers in paid work.; Methods: Participants (N=21 604) in paid work from the Swedish Longitudinal Occupational Survey of Health. Sleeping problems were measured with a validated scale of sleep disturbance (Karolinska Sleep Questionnaire). Random-effects modelling was used to examine the cross-sectional association between informal caregiving (self-reports: none, up to 5h per week, over 5h per week) and sleep disturbance.

Tue, 01/22/2019 - 13:31

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

Reduced cardiovascular activation following chronic stress in caregivers of people with anorexia nervosa

Caring for offspring diagnosed with eating disorders (EDs) puts caregivers under high levels of chronic stress, which have negative consequences for their health. Unfortunately, caregivers have received little attention from mental health professionals. Chronic stress experienced by informal caregivers has been associated with the alteration of body homeostasis, and therefore, the functioning of various physiological systems. This could be the basis of health problems in informal caregivers of people with EDs.

Tue, 01/22/2019 - 13:17

Stress-Induced Endocrine and Immune Dysfunctions in Caregivers of People with Eating Disorders

Caregivers have to cope repeatedly with acute stressors in their daily lives, and this is associated with disturbances in the hypothalamic-pituitary-adrenal (HPA) axis and the immune system. Such disturbances could contribute to the development of health problems in informal caregivers of people with chronic illnesses, such as eating disorders (EDs).

Tue, 01/22/2019 - 12:15

Informal Caregiving and the Politics of Policy Drift in the United States

Informal caregivers play an increasingly important role in caring for aging Americans. Yet existing social policies that could support informal caregiving have experienced "policy drift," a failure to adapt to social risks that develop after policies are initially enacted. This article examines policy makers' success at updating seven major policies to address caregiver needs. It draws on an original data set of legislation in this area introduced between 1991 and 2006 (n = 96).

Tue, 01/22/2019 - 11:58

Evaluation of DementiaNet, a network-based primary care innovation for community-dwelling patients with dementia: protocol for a longitudinal mixed methods multiple case study

Introduction: Primary healthcare professionals will increasingly be required to manage and optimise their treatment for patients with dementia. With DementiaNet, we aim to reduce the burden of dementia on healthcare services and society through implementation and facilitation of integrated network-based care with increased dementia expertise. DementiaNet is designed as a stepwise approach including clinical leadership, quality improvement cycles and interprofessional training, which are tailor-made to the local context.

Tue, 01/22/2019 - 11:51

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

Good and Bad Days: Fluctuations in the Burden of Informal Dementia Caregivers, an Experience Sampling Study

Background: Informal dementia caregivers (IDCs) are often confronted with important fluctuations in care-related burden, commonly described as "good and bad days." These fluctuations are overlooked by traditional questionnaires focusing on the average experience. The experience sampling method (ESM) is based on the repeated collection of data in everyday life, thereby allowing the description of day-to-day fluctuations in IDC burden, and the identification of their correlates.

Tue, 01/22/2019 - 11:05

The lived experience of caregivers of persons with heart failure: A phenomenological study

Background: Heart failure (HF) patients need to follow a strict pharmacological and nonpharmacological regimen in order to counteract the burden of the disease, and informal caregivers are an important resource for HF patients in managing and coping with their disease.

Tue, 01/22/2019 - 10:58

Psychometric evaluation of the Caregiver Preparedness Scale in caregivers of adults with heart failure

Well-prepared informal caregivers play an important role in heart failure (HF) care, so an instrument to evaluate their preparedness to care is important. To date, HF caregiver preparedness has been rarely investigated quantitatively. The Caregiver Preparedness Scale (CPS) has been used in other chronic condition populations, but its psychometric characteristics have never been tested in HF caregivers. The purpose of this study was to test the validity and reliability of the 8-item CPS in HF caregivers.

Tue, 01/22/2019 - 10:52