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Public Library of Science

Why aren't people with young onset dementia and their supporters using formal services? Results from the INSPIRED study

Background/Aims: Despite reporting high levels of burden, supporters of people with young onset dementia (YOD) underuse formal community services. Previous quantitative studies in YOD are of limited utility in guiding service design because they did not consider important contextual barriers to service use. The aim of this study was to identify all relevant barriers and describe the service features considered most important to improving uptake by people with YOD and their supporters.

Thu, 03/07/2019 - 13:04

Stroke survivors' and informal caregivers' experiences of primary care and community healthcare services - A systematic review and meta-ethnography

Objective: To describe and explain stroke survivors and informal caregivers' experiences of primary care and community healthcare services.

Wed, 02/06/2019 - 13:10

The use of informal care by people with vision impairment

Purpose: To estimate and characterize the use of informal care by people with vision impairment in Portugal.; Methods: A total of 546 visually impaired individuals were recruited from Portuguese hospitals. Clinical information was obtained from medical records, socio-demographic details and informal care use were collected during face-to-face interviews. In addition, participants responded to a functional vision questionnaire (activity inventory) to assess their visual ability.

Tue, 02/05/2019 - 15:58

Mild cognitive dysfunction of caregivers and its association with care recipients' end-of-life plans and preferences

Little is known about the association between cognitive dysfunction among informal caregivers and patients' plans and preferences for patients' end of life care. We report on the frequency of cognitive dysfunction among both patients and caregivers and examine associations between caregivers' cognitive screening scores and end of life plans and preferences of patients with advanced cancer.

Tue, 02/05/2019 - 11:35

Traditions of research in community mental health care planning and care coordination: A systematic meta-narrative review of the literature

Context: In response to political and social factors over the last sixty years mental health systems internationally have endeavoured to transfer the delivery of care from hospitals into community settings. As a result, there has been increased emphasis on the need for better quality care planning and care coordination between hospital services, community services and patients and their informal carers.

Fri, 02/01/2019 - 19:14

Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study

Background: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.; Methods: Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention.

Thu, 01/31/2019 - 12:54

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

Social support and subjective burden in caregivers of adults and older adults: A meta-analysis

Background: Despite the generally accepted belief that social support improves caregiver adjustment in general and subjective burden in particular, the literature shows mixed findings, and a recent review concluded that the predictive strength of caregiver social support in determining caregiver burden is less evident, due to the conceptual diversity of this determinant.; Objective: The purpose of this review is to analyse the relationship of perceived and received social support with subjective burden among informal caregivers of an adult or older adult.;

Thu, 01/31/2019 - 10:54

"Please listen to me": A cross-sectional study of experiences of seniors and their caregivers making housing decisions

Background: Little is known about the decision-making experiences of seniors and informal caregivers facing decisions about seniors' housing decisions when objective decision making measures are used.; Objectives: To report on seniors' and caregivers' experiences of housing decisions.; Design: A cross-sectional study with a quantitative approach supplemented by qualitative data.; Setting: Sixteen health jurisdictions providing home care services, Quebec province, Canada.; Participants: Two separate samples

Tue, 01/22/2019 - 16:15

Psychometric properties of a Power Mobility Caregiver Assistive Technology Outcome Measure

Caregiver burnout is a serious concern among informal caregivers, especially for those who provide care to individuals with more severe limitations such as power mobility users. The Power Wheelchair Caregiver Assistive Technology Outcome Measure tool measures device specific and overall burden experienced by informal caregivers of power mobility users. A one-month, test-retest study was conducted to examine the reliability, internal consistency, and construct validity of the Power Wheelchair Caregiver Assistive Technology Outcome Measure.

Mon, 01/21/2019 - 15:54