title: Experiences of Parents and General Practitioners with End-of-Life Care in Adolescents and Young Adults with Cancer.
abstract: This study aims to analyze the experiences of Dutch bereaved parents and general practitioners (GPs) with palliative care of AYAs (18-35 years) in the terminal stage. Fifteen parents and nine GPs involved with nine deceased AYAs filled out questionnaires and were interviewed by telephone, respectively. In general, the parents were satisfied with the emotional care they themselves received and the medical care that their child received. The GPs were very satisfied with the cooperation with the palliative team. Gaps are present in the areas of symptom control, communication between hospital professionals and parents, aftercare, and transition between hospital and GP.
authors.affiliation: 1 Department of Medical Oncology, Radboud University Medical Center , Nijmegen, The Netherlands .
authors.forename: Suzanne E J
authors.initials: SE
authors.lastname: Kaal
authors.affiliation: 1 Department of Medical Oncology, Radboud University Medical Center , Nijmegen, The Netherlands .
authors.forename: Noortje M J
authors.initials: NM
authors.lastname: Kuijken
authors.affiliation: 1 Department of Medical Oncology, Radboud University Medical Center , Nijmegen, The Netherlands .|2 Department of Anaesthesiology, Pain, and Palliative Care, Radboud University Medical Center , Nijmegen, The Netherlands .
authors.forename: Constant A H H V M
authors.initials: CA
authors.lastname: Verhagen
authors.affiliation: 1 Department of Medical Oncology, Radboud University Medical Center , Nijmegen, The Netherlands .
authors.forename: Rosemarie
authors.initials: R
authors.lastname: Jansen
authors.affiliation: 3 Department of Medical Psychology, Radboud University Medical Center , Nijmegen, The Netherlands .
authors.forename: Petra
authors.initials: P
authors.lastname: Servaes
authors.affiliation: 1 Department of Medical Oncology, Radboud University Medical Center , Nijmegen, The Netherlands .
authors.forename: Winette T A
authors.initials: WT
authors.lastname: van der Graaf
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001291:Attitude of Health Personnel; D001294:Attitude to Health; D003142:Communication; D005260:Female; D058005:General Practitioners / Q000523:psychology*; D017051:Hospice Care / Q000592:standards; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D009426:Netherlands; D010166:Palliative Care / Q000592:standards; D010290:Parents / Q000523:psychology*; D010348:Patient Care Team / Q000592:standards; D011594:Psychometrics; D011787:Quality of Health Care; D012944:Social Support; D013727:Terminal Care / Q000592:standards*; D055815:Young Adult
keywords: end-of-life; palliative care