OBJECTIVES: Chronically ill adolescent and young adult (AYA) patients experience barriers to accessing psychosocial care. AYAs who receive palliative and psychosocial care experience numerous benefits from these services. However, we still lack…
This study aims to understand the experiences of professionals involved in caring for families of children with life-limiting illnesses to ascertain unmet needs, access issues and expectations of services.A phenomenological approach comprising…
The study was to describe the essence of the lived experience of parents with a child with incurable cancer at the end of life (EOL). A descriptive phenomenological study was conducted with ten parents of children with incurable cancer in a medical…
Background Self-injurious behaviour is commonly seen in Cornelia de Lange syndrome (CdLS). However, there has been limited research into the aetiology of self-injury in CdLS and whether environmental factors influence the behaviour. Methods We…
The purpose of this study was to validate the Behavior Problem Inventory-01 (BPI-01; Rojahn J Autism Dev Disord 31:577-588, 2001) in a population of 179 individuals with Cornelia de Lange Syndrome (CdLS) and to extend the literature on the behavioral…
Background/Objectives: Bereaved parents during palliative care affects the quality of life of children and family. This research aims to explore parents' experiences caring children with cancer in palliative condition. Design/Methods: The research…
Objectives: The experiences of medical residents during training in pediatric palliative care has recently become an area of focus within medical education literature. Residents' medical knowledge, skill development, and comfort in clinical practice…
By employing the phenomenographic approach, the present study explored children's cognitive understanding of and emotional responses to death and bereavement. Participants included 52 Korean, 16 Chinese, and 16 Chinese American children ages 5-6.…
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological…
