survey

Background: The aim of this study was to understand the impact of Dravet syndrome (DS) on patients with Dravet syndrome and their families, with a focus on the social and economic impact on both mothers and fathers.

Objectives: Caregiver self-efficacy-a caregiver's belief in his/her ability to contribute to patient self-care-is associated with better patient and caregiver outcomes in single chronic conditions. It is, however, unknown if caregiver self-efficacy improves patient and caregiver outcomes in multiple chronic conditions (MCCs) because there is no instrument to measure this variable.

Background: Over the past decades, informal care has increased in most OECD-countries. Informal care is costly to caregivers and to society in the form of lost income and direct costs of providing care. Existing evidence suggests that providing informal care affects caregivers’ overall health. However, estimates of the social costs of informal care based on national data on individuals are currently scarce.

Background: When COVID-19 was declared as a pandemic, many countries imposed severe lockdowns that changed families' routines and negatively impacted on parents' and children's mental health. Several studies on families with children with autism spectrum disorder (ASD) revealed that lockdown increased the difficulties faced by individuals with ASD, as well as parental distress. No studies have analyzed the interplay between parental distress, children's emotional responses, and adaptive behaviors in children with ASD considering the period of the mandatory lockdown.

Background: Community health-care services for older, home-dwelling persons with dementia tend to be underutilised. Family care-givers provide substantial care, and they often arrange for and co-ordinate health-care services on behalf of persons with dementia. Objectives: The aim of this study was to examine family care-givers' knowledge of unused services and their self-reported reasons for non-use of such services. We gathered cross-sectional survey data from 430 family care-givers of older persons with dementia in Northern Norway.

Background: As family caregivers of patients undergoing hematopoietic cell transplantation have multifaceted caregiving responsibilities (such as medical, household, financial) of long duration, they also have multiple physical, social, psychological, and informational needs. Objective: This study explored the prevalence of electronic health record patient portal use by family caregivers for managing both their own and their hematopoietic cell transplantation care recipient’s health, as well as potential factors associated with portal use.

Purpose: The purpose of this study was to describe the burden and educational needs of informal caregivers of care-dependent older adults with urinary incontinence (UI). Design: A cross-sectional, descriptive survey of informal caregivers recruited through Google Ads was performed. Methods: An online survey, including the Overactive Bladder-Family Impact Measure, was used to assess five areas of the experience of the informal caregiver that may be affected by caring for a person with UI and their educational needs.

Informal caregivers are people providing some type of unpaid, ongoing assistance to a person with a chronic illness or disability. Long-term care measures and policies cannot take place without taking into account the quantitatively crucial role played by informal caregivers. We use the European Health Interview Survey (EHIS), the European Quality of Life Survey (EQLS), and the Study on Health and Ageing in Europe (SHARE) to measure the prevalence of informal caregivers in the European population, and analyze associated socio-demographic factors.

Background: Family caregivers contribute substantially to the care for older home-dwelling people with dementia, although community healthcare services tend to be underutilized. In this study, we aimed to explore the use and predictors of use of home-based and out-of-home respite care services available to older home-dwelling persons with dementia, as reported by the family caregivers. Method: A cross-sectional survey was administered to family caregivers (n = 430) in Northern Norway during April to November 2016.

Context: Although bereaved family surveys (BFS) are routinely used quantitatively for quality assessment, open-ended and narrative responses are rarely systematically analyzed. Analysis of narrative responses may identify opportunities for improving end-of-life (EOL) care delivery. Objectives: To highlight the value of routine and systematic analysis of narrative responses and to thematically summarize narrative responses to the BFS of Veterans Affairs.