title: Terminal care of the child with cancer at home.
abstract: One hundred paediatric patients with either leukaemia (36%), solid tumours (34%) or brain tumours (30%), treated at the Children's Hospital, University of Helsinki, Finland, died during 1987-92; 70 of them died while in organized terminal care. They were treated at home (60%), in hospital (29%), and partly at both (11%). One or both parents stayed at home to take care of their child. Personnel of the oncologic ward coordinated home care. The purpose of this study was to evaluate the advantages and disadvantages of a terminal care program, with special reference to terminal care at home. Evaluation included retrospective analysis of patients' records, as well as a structured interview with the two parents separately. The quality of life of the children during the terminal period was greatly influenced by their happiness at being at home. Relief of symptoms, particularly pain, was in most instances adequate. Most parents had no complaints to make afterwards. Only some of them complained of having received too little information, too little supervision and support, and insufficient preparation for the death of the child. Thus, the system of terminal care at home proved satisfactory for the child and the whole family in many different respects. For successful home care, the parents need continuous supervision, help and support by well-trained personnel.
authors.affiliation: Children's Hospital, University of Helsinki, Finland.
authors.forename: K
authors.initials: K
authors.lastname: Sirkiä
authors.forename: U M
authors.initials: UM
authors.lastname: Saarinen
authors.forename: B
authors.initials: B
authors.lastname: Ahlgren
authors.forename: L
authors.initials: L
authors.lastname: Hovi
mesh_terms: D000293:Adolescent; D002648:Child; D002654:Child Care; D002675:Child, Preschool; D003657:Decision Making; D005260:Female; D005387:Finland; D018575:Home Care Services, Hospital-Based; D006801:Humans; D007223:Infant; D007938:Leukemia / Q000451:nursing; D008297:Male; D009369:Neoplasms / Q000451:nursing*; D010348:Patient Care Team; D015397:Program Evaluation; D013727:Terminal Care