Pediatric palliative care

Life-threatening illnesses in children have a significant impact on the lives of their brothers and sisters. Consequently, special attention must be paid to the specific needs of these siblings to help them cope with their situations. To address this issue, we developed an inventory of the needs of the adolescent siblings of severely ill children, the Inventaire des Besoins de la Fratrie d'Enfants Malades Severement (IBesFEMS) [Needs Inventory for Siblings of Critically Ill Children]. The present article describes a preliminary validation study of this new instrument.

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs.

Background: Children in rural geographies are not universally able to access pediatric-trained palliative or hospice providers.

Objective: Determine whether telehealth inclusion of a familiar pediatric palliative care provider during the first two home-based hospice visits was acceptable to children, families, and adult-trained home hospice nurses in rural settings. Design: Case series. Setting: Home hospice in rural Midwest. Participants: Patients <18 years of age enrolling in home hospice for end-of-life care.

Objective: The death of a child has been associated with adverse parental outcomes, including a heightened risk for psychological distress, poor physical health, loss of employment income, and diminished psychosocial well-being. Psychosocial standards of care for centers serving pediatric cancer patients recommend maintaining at least one meaningful contact between the healthcare team and bereaved parents to identify families at risk for negative psychosocial sequelae and to provide resources for bereavement support.

Context: Children with life-shortening serious illnesses and medically-complex care needs are often cared for by their families at home. Little, however, is known about what aspects of pediatric palliative and hospice care in the home setting (PPHC@Home) families value the most. Objectives: To explore how parents rate and prioritize domains of PPHC@Home as the first phase of a larger study that developed a parent-reported measure of experiences with PPHC@Home.