Jour

Objectives: This research produces a preference-based monetary valuation of informal care provided to children with intellectual disability (ID) that can be directly applied in economic evaluations. Methods: A discrete-choice experiment (DCE) was designed to elicit an individual's willingness to accept compensation for different care tasks.

Background: The communication relationship between parents of children or young people with health conditions and health professionals is an important part of treatment, but it is unclear how far the use of digital clinical communication tools may affect this relationship. Objective: The objective of our study was to describe, assess the feasibility of, and explore the impact of digital clinical communication between families or caregivers and health professionals. Methods: We searched the literature using 5 electronic databases.

Objective: To compare health-related quality of life (HRQoL) in children with prune-belly syndrome (PBS) and their caregivers to healthy controls, as children and adolescents with PBS face numerous potential physical and psychosocial challenges. Materials and Methods: Study participants completed the Pediatric Quality of Life Inventory Generic Core Scales (PedsQL) 4.0 generic core scales (children) or Quality of Life Enjoyment and Satisfaction Questionnaire Short Form (Q-LES-Q-SF) (caregivers) in an online, anonymous format.

Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the time taken to care for patients suffering from SMA in European countries and the burden on their informal caregivers. We designed a cross-sectional study recording data from France, Germany, Spain and the United Kingdom.

Objective: The present study examined the extent to which social support (SS) availability and satisfaction could predict the extent of caregiver burden (CB) among mothers of children with Acute Lymphocytic Leukemia (ALL). Method: The study was a cross-sectional, descriptive-correlative study. It was conducted on a sample of 117 mothers whose children were undergoing treatment in a public hospital in Bam, Iran. The Norbeck Social Support Scale and the Caregiver Burden Scale were used to measuring study variables.

Background: Mindfulness-based stress reduction (MBSR) is an evidence-based intervention that teaches participants skills in reducing stress and managing challenging emotions in a group setting. Mindfulness-based therapies have demonstrated effectiveness in various populations, and therefore may be beneficial for family carers. Aim: To deliver and appraise a pilot MBSR group programme for family carers of adults and children with a mental health condition, physical health condition or learning disability.