Springer

Background: Caregivers are major contributor to the self-care of patients with heart failure. The Caregiver Contribution to Self-Care of Heart Failure Index (CC-SCHFI) measures these contributions across three scales: self-care maintenance (symptom monitoring and treatment adherence); self-care management (dealing with symptoms); and confidence in contributing to the self-care (self-efficacy in managing self-care) of patients with heart failure.

Background: Autosomal recessive congenital ichthyoses (ARCI) are a genetically heterogeneous group of rare and chronic disorders characterized by generalized skin scaling and hyperkeratosis, erythroderma, and palmoplantar keratoderma. Additional features include ectropion, eclabium, ear deformities, foul-smell, joints contractures and walking problems, recurrent infections, as well as pruritus and pain. No curative therapy is available and disease care mainly relies on daily application of topical emollients and keratolytics to the whole-body surface.

Background: Among potentially modifiable risk factors for delirium, transfers between wards, hospitals and other facilities have been mentioned with low evidence. TRADE (TRAnsport and DElirium in older people) was set up to investigate i) the impact of transfer and/or discharge on the onset of delirium in older adults and ii) feasibility and acceptance of a developed complex intervention targeting caregiver’s participation during and after hospital discharge or transfer on cognition and the onset of delirium in older adults.

Background: The Family Reported Outcome Measure (FROM-16) assesses the impact of a patient’s chronic illness on the quality of life (QoL) of the patient’s partner or family members. Objective: The aim of the study was to translate, explore the structure of and validate the FROM-16. Methods: The questionnaire was translated from English into German (forward, backward, four independent translators).

Background: Worldwide, restrictive measures have been taken to manage the spread of the COVID-19 pandemic. Social distancing and self-isolation have considerably affected the lives of people with dementia and their informal caregivers. Objectives: The purpose of the study was to explore the consequences of the COVID-19 pandemic as experienced by the spouses of home-dwelling people with dementia in Norway. Methods: The study had a qualitative descriptive design using individual telephone interviews for data collection.

Background: Adult children are often key carers of frail older parents providing care for a long period of time in different care contexts. However, research concerning adult children’s caregiving experiences, from providing home-based care to facing the death of a parent in a nursing home is sparse. Thus, the aim was to explore the transition from living at home to moving into and living in a nursing home and the time after death from the perspective of next of kin to an older person.

Background: Assistive Technology (AT) supports persons with dementia and their carers (family, friends and neighbours), yet little is known about experiences and the impact of AT on carers. We report on an exploratory survey that examined the types, uses, costs and impact of AT on carers as well as their quality of life.

Methods: Using the data of the 2006 Japanese Survey on Time Use and Leisure Activities, we perform cluster analysis and identify seven unique patterns of daily time-use patterns of co-resident family elder caregivers: (1) ‘Overworkers’, (2) ‘Full-time Workers’, (3) ‘Part-time Workers’, (4) ‘Intensive Caregivers’, (5) ‘Houseworkers’, (6) ‘Leisurely’, and (7) caregivers, who needed medical attention on the diary day (‘Emergency Diaries’).

Background: Cancer patients commonly require assistance from a relative or friend, and many of these “family caregivers” are navigating employment while caring. Objectives: The purpose of this analysis was to understand the experience of employment while providing care to someone with cancer, including these caregivers’ roles and burden, adjustments made to employment, assistance provided by employers, and preferences for employment and financial support.