Jour

Background: Cerebral palsy is a major cause of disability and most survivors are left with residual disability and are dependent on parents/caregivers for essential care. This study aimed to determine the experiences of parents/caregivers of cerebral palsy children receiving out-patient physiotherapy.

Background: To date, there has been no published comprehensive estimation of costs related to Prader-Willi syndrome (PWS). Our objective was therefore to provide data on the economic burden and health-related quality of life associated with PWS in France in order to raise awareness of the repercussions on individuals suffering from this syndrome and on caregivers as well as on the health and social care systems. Method: A retrospective cross-sectional study was carried out on 51 individuals recruited through the French PWS patient association.

Objectives: To evaluate the existing body of evidence to determine the current state of knowledge regarding the perspectives of the following groups: (1) children with cancer, (2) family caregivers, and (3) healthcare professionals, about symptoms, as well as factors that may influence the symptom reports. Methods: A systematic search was performed for all types of studies that included the perspectives of at least two groups of participants' symptom reports.

Background: Enteral tubes are prevalent among children with medical complexity (CMC), and complications can lead to costly health care use. Our objective was to design and test the usability of a mobile application (app) to support family-delivered enteral tube care. Methods: Human-centered design methods (affinity diagramming, persona development, and software development) were applied with family caregivers of CMC to develop a prototype.

Purpose: Siblings of individuals with disabilities provide the most long-term care for an individual with disabilities, yet research on their experiences is limited. A majority of previous research focuses on young siblings from a parent's viewpoint. The purpose of this paper is to investigate the effects of having a sibling with a disability and behaviour described as challenging from adult siblings' perspectives.

Purpose: Many children with complex needs exhibit eating, drinking, and/or swallowing disorders (dysphagia). These children often have associated learning needs, and require assistance from carers for daily tasks such as eating and drinking. The aim of this study was to identify which strategies to manage dysphagia were challenging for family carers, and reasons for any non-adherence. Method: In this service evaluation researchers observed carers during mealtimes, and investigated carer opinions of strategies used to minimise the risks of dysphagia.

Background: The impact of pediatric hematopoietic stem cell transplant (HCT) on family functioning varies, but little is known about how the timing of HCT in children's treatment course contributes to this variability.

Objective: To quantify the economic and health-related quality of life (HRQoL) burden incurred by households with a child affected by spinal muscular atrophy (SMA). Methods: Hospital records, insurance claims, and detailed resource use questionnaires completed by caregivers were used to capture the direct and indirect costs to households of 40 children affected by SMA I, II, and III in Australia between 2016 and 2017. Prevalence costing methods were used and reported in 2017 US dollar (USD) purchasing power parity (PPP).

Introduction: The effects of prenatal exposure to alcohol are wide-ranging and pervasive in nature. In response to growing concerns about the lifelong disabilities related to prenatal alcohol exposure, a fetal alcohol spectrum disorder (FASD) diagnostic clinic was established in 2012. This was the first multi-disciplinary service operating permanently within an Australian health service.

Aim: The aim of this study was to explore the caregiver burden and related factors such as expressed emotion (EE), social support, life satisfaction, dyadic adjustment, post-traumatic growth, and socio-demographic characteristics of mothers with autism spectrum disorder (ASD) children.