Elsevier

Objectives: Describe the advance care planning communication preferences of children and adolescents and young adults (AYAs) with serious illness and their families. Describe multidisciplinary clinicians' current approach to advance care planning communication as well as perceived facilitators and barriers to initiating advance care planning discussions with AYAs and parents of children with serious illness. Discuss opportunities for further research to improve advance care planning communication for children and AYAs with serious illness and their families.

Individuals with neurogenetic syndromes comprise a large subset of the population of people with intellectual disability. Members of neurogenetic syndrome communities, including self-advocates, caregivers, family members, and service providers, can be valuable partners in translational research and its application to intervention and advocacy.

Objectives: We sought to describe and analyze the quantitative and qualitative feedback obtained from participants and their caregivers of the Smart Heart study, a successful 12-month lifestyle intervention for children with overweight or obesity and congenital heart disease that provided remote lifestyle counseling, to improve future lifestyle interventions in children.

Objective: To assess the lived experience of parents whose child has suffered a stroke.

Advances in neonatal care have led to increased survival of infants with complex medical needs and technology dependence. Transition of the ventilator-dependent infant from hospital to home is a complex process that requires extensive coordination between the medical team and family. Home caregivers must be prepared to provide routine care for the ventilator-dependent child and respond to life-threatening emergencies. Families should be counseled on the need for home nursing, medical equipment and an adequate home environment to ensure a safe transition to home.

Objective: Socioeconomic hardship is common among children hospitalized for asthma but often not practically measurable. Information on where a child resides is universally available. We sought to determine the correlation between neighborhood-level socioeconomic data and family-reported hardships. Methods: Caregivers of 774 children hospitalized with asthma answered questions regarding income, financial strain, and primary care access.

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.

Objectives: To explore needs of parents of very preterm infants hospitalised in Neonatal Intensive Care Units according to their socioeconomic position, obstetric history and infant’s characteristics. Methodology: Sequential explanatory mixed methods study.

Objectives: Explain gaps in legacy research for pediatric palliative care and oncology. Explain key components of our legacy intervention for children with advanced cancer. Explain methods of our study that was part of a larger RCT. Importance: Although legacy-building is a priority for quality palliative care, research has rarely examined effects of legacy interventions in children, particularly their impact on parent-child communication. Objective(s): We examined the impact of a legacy intervention on parent-child communication.