Jour

Background: It is highly important for healthcare professionals to give discharge education to families to increase their knowledge of gastrostomy care and complications and to inform them about the correct behaviors. The purpose of the present descriptive pretraining and posttraining evaluation study was to investigate the effects of a standardized, evidence-based discharge education program prepared for children with gastrostomy tubes on the caregivers' knowledge, anxiety levels, and caregiving burden.

Objective: This study evaluates and characterizes the use of a confidential clinic note type as part of the implementation of open notes at a free-standing children's hospital. We describe how this electronic health record feature which disables patient and family access to selected notes in the patient portal is used across our institution, which clinicians are using this feature, and the type of data our clinicians consider confidential.

Objective: The study was conducted to examine the caregiver burden and stress coping styles of parents of children with Autism Spectrum Disorder (ASD). Design and Methods: This descriptive cross-sectional study was conducted with parents of 131 children with ASD who were enrolled in a private education practice center in Istanbul between August 2015 and August 2016.

Context: As children with life-limiting illnesses (LLIs) and life-threatening illnesses (LTIs) live longer, challenges to meeting their complex health care needs arise in homes and communities, as well as in hospitals. Integrated knowledge regarding community-based pediatric palliative care (CBPPC) is needed to strategically plan for a seamless continuum of care for children and their families. Objectives: The purpose of this integrative review article is to explore factors that are associated with the use of CBPPC for U.S.

Background: Parenting a child with autism spectrum disorder (ASD) can be stressful, and accessing services can add to this stress. Self-efficacy, agency and advocacy are important for parents when accessing and using services. To develop insight into parental advocacy, a meta-synthesis was undertaken to consolidate the literature focussing on parents' experiences of advocating for their child with ASD. Methods: A qualitative meta-synthesis was conducted.

Zellweger spectrum disorders (ZSD) are rare, debilitating genetic diseases of peroxisome biogenesis that affect multiple organ systems and present with broad clinical heterogeneity. Although many case studies have characterized the multitude of signs and symptoms associated with ZSD, there are few reports on the prevalence of symptoms to help inform the development of meaningful endpoints for future clinical trials in ZSD.

Using a mobile health application (i.e. app) to empower primary caregivers of young children with developmental disorders in low- and middle-income countries is opening up new avenues for early childhood intervention. Thirteen caregivers and ten speech-language pathologists participated in three focus groups to explore their perspectives about the potential benefits and suitability of a mobile health app as part of intervention, its features, the likelihood of using and recommending it, as well as potential pitfalls to be avoided.