title: Bereaved parents' perspectives on pediatric palliative care.
abstract: This study's goal was to describe and begin to understand the experience of bereaved parents whose deceased child had received pediatric oncology services at a tertiary comprehensive cancer center. Focus groups were conducted with parents whose children were age 10 years and older at the time of death. Potential participants were contacted by mail and telephone. Sessions were audiotaped and transcribed verbatim. The ATLAS.ti qualitative software program was used to identify and analyze dominant themes. Fourteen parents identified four major themes: standards of care, emotional care, communication, and social support. Bereaved parents discussed the challenges associated with institutional procedures and interpersonal aspects of care in anticipation of and following their child's death. The results of these personal narratives may be used to guide care plans and deliver pediatric palliative and end-of-life interventions.
authors.affiliation: Division of Pediatrics, The University of Texas MD Anderson Cancer Center Children's Cancer Hospital, Houston, Texas 77030, USA. rrobert@mdanderson.org
authors.forename: Rhonda
authors.initials: R
authors.lastname: Robert
authors.forename: Donna S
authors.initials: DS
authors.lastname: Zhukovsky
authors.forename: Riza
authors.initials: R
authors.lastname: Mauricio
authors.forename: Katherine
authors.initials: K
authors.lastname: Gilmore
authors.forename: Shirley
authors.initials: S
authors.lastname: Morrison
authors.forename: Guadalupe R
authors.initials: GR
authors.lastname: Palos
mesh_terms: D000293:Adolescent; D000328:Adult; D001293:Attitude to Death; D001601:Bereavement; D002648:Child; D005260:Female; D017144:Focus Groups; D006801:Humans; D015278:Intensive Care Units, Pediatric; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology* / Q000628:therapy; D010166:Palliative Care / Q000379:methods / Q000523:psychology*; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team; D010372:Pediatrics / Q000458:organization & administration; D011368:Professional-Family Relations; D012944:Social Support; D013727:Terminal Care / Q000379:methods / Q000523:psychology*