Parental perspectives on suffering and quality of life at end-of-life in children with advanced heart disease: an exploratory study

• Published in: Pediatric critical care medicine Vol. 15; no. 4; p. 336
• Main Authors: Blume, Elizabeth D, Balkin, Emily Morell, Aiyagari, Ranjit, Ziniel, Sonja, Beke, Dorothy M, Thiagarajan, Ravi, Taylor, Laura, Kulik, Thomas, Pituch, Kenneth, Wolfe, Joanne
• Format: Journal Article
• Language: English
• Published: United States 01.05.2014
• Subjects: Adolescent; Adult; Attitude to Death; Bereavement; Child; Child, Preschool; Cross-Sectional Studies; Death; Dyspnea - psychology; Fatigue - psychology; Feeding and Eating Disorders - psychology; Female; Heart Diseases - psychology; Heart Diseases - therapy; Humans; Infant; Infant, Newborn; Male; Middle Aged; Pain - psychology; Palliative Care - psychology; Parents - psychology; Quality of Health Care; Quality of Life; Terminal Care - psychology; Withholding Treatment; Young Adult

To describe parent perspectives regarding the end-of-life experience of children with advanced heart disease. Cross-sectional multicenter survey study of bereaved parents. Two tertiary care pediatric hospitals. Parents of children younger than 21 years with primary cardiac diagnoses who died in the...