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Background: Medical progress and the lifestyle modification have prolonged life expectancy, despite the development of chronic diseases. Support and care for older subjects are often provided by a network of informal caregivers composed of family, friends and neighbors, who are essential in helping older persons to continue living at home. It has been shown that the extent and diversity of informal tasks may jeopardize the physical, mental and social wellbeing of caregivers.
Methods/design: The aim of the Informal Carers of Elderly cohort is to define, through a longitudinal study, profiles of caregivers of older patients with a diagnosis of one of the following diseases: cancer (breast, prostate, colorectal), neurodegenerative diseases (Parkinson's disease, Alzheimer's disease and similar diseases), neurovascular diseases (stroke), sensory diseases (age-related macular degeneration (AMD)) and heart disease (heart failure). Patients must be at least 60 years old and living in the region of Burgundy-Franche-Comte (France). By following the different phases of the caregiving relationship from the announcement of the diagnosis, it will be possible to assess the quality of life of caregivers, coping strategies, levels of anxiety and depression, social support and the extent of their burden. We will also evaluate the efficacy and efficiency of the implementation of a pragmatic intervention by a social worker to help informal caregivers, through a randomized interventional trial nested in the cohort. Qualitative approaches aimed at studying the caregiver/patient relationship, and situations leading to breakdown of the caregiver relationship will be also undertaken.
Discussion: Through an analytical and longitudinal definition of profiles of informal caregivers, this study will gather detailed information on their life courses and their health trajectory by identifying consequences associated with the concept of their role as carers. In addition, the randomized interventional trial will explore the relevance of the implementation of a supportive intervention by a social worker to help caregivers. These data will help to identify strategies that could be used to improve the existing sources of aid and to propose new approaches to help caregivers. This study will provide the opportunity to identify the most relevant means of support adapted to caregivers, and provide an impulse for new health care policies.
Trial Registration: ClinicalTrials.gov Identifier: NCT02626377 . Retrospectively registered on 9 December 2015. Protocol date/version: 23 October 2014/version 2.
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http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5122007 | PMC |
http://dx.doi.org/10.1186/s13063-016-1622-8 | DOI Listing |
JMIR Aging
December 2024
Department of Health & Wellness Design, School of Public Health- Bloomington, Indiana University, Bloomington, IN, United States.
Background: As Alzheimer disease (AD) and AD-related dementias (ADRD) progress, individuals increasingly require assistance from unpaid, informal caregivers to support them in activities of daily living. These caregivers may experience high levels of financial, mental, and physical strain associated with providing care. CareVirtue is a web-based tool created to connect and support multiple individuals across a care network to coordinate care activities and share important information, thereby reducing care burden.
View Article and Find Full Text PDFPediatr Cardiol
December 2024
Pediatrix Medical Group, Sunrise Children's Hospital, Las Vegas, NV, USA.
Infants requiring surgery for congenital heart disease (CHD) are at an increased risk of neurodevelopmental delay. Developmental Care Rounds (DCR) have been implemented widely to support the neurodevelopment of children with CHD while admitted to the hospital. This study aims to describe caregiver perceptions of DCR at a quaternary academic children's heart center.
View Article and Find Full Text PDFCrit Care Med
December 2024
Department of Digital Health Research, Division of Medicine, Oslo University Hospital, Oslo, Norway.
Objectives: Explore short-term effects of "The Caregiver Pathway," an intervention for family caregiver follow-up, on Post-Intensive Care Syndrome symptoms among families (PICS-F).
Design: A randomized controlled trial.
Setting: A medical ICU at a Norwegian University Hospital.
Muscle Nerve
December 2024
Department of Neurology, Children's Hospital, Zhejiang University School of Medicine, National Clinical Research Center for Child Health, Hangzhou, China.
Introduction/aims: The rising use of disease-modifying therapy is progressively impacting the health-related quality of life (HRQoL) of patients with spinal muscular atrophy (SMA) in their daily lives. This study aimed to evaluate the changes in HRQoL and independence in children with later-onset SMA receiving longitudinal treatment with nusinersen.
Methods: Forty-nine pediatric patients with later-onset SMA (symptom onset after 6 months of age) and their caregivers were enrolled.
J Hum Lact
December 2024
Faculty of Health Sciences, Hokkaido University, Sapporo, Japan.
Background: No research has been conducted on the use of deep learning for breastfeeding support.
Research Aim: This study aims to develop a nipple trauma evaluation system using deep learning.
Methods: We used an exploratory data analysis approach to develop a deep-learning model for medical imaging.
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