title: Care-related distress: a nationwide study of parents who lost their child to cancer.
abstract: OBJECTIVE
  Palliative care is an important part of cancer treatment. However, little is known about how care-related factors affect bereaved intimates in a long-term perspective. We conducted a population-based, nationwide study addressing this issue, focusing on potential care-related stressors in parents losing a child to cancer.
  
  
  METHODS
  In 2001, we attempted to contact all parents in Sweden who had lost a child to cancer in 1992 to 1997. The parents were asked, through an anonymous postal questionnaire, about their experience of the care given and to what extent these experiences still affect them today.
  
  
  RESULTS
  Information was supplied by 449 (80%) of 561 eligible parents. Among 196 parents of children whose pain could not be relieved, 111 (57%) were still affected by it 4 to 9 years after bereavement. Among 138 parents reporting that the child had a difficult moment of death, 78 (57%) were still affected by it at follow-up. The probability of parents reporting that their child had a difficult moment of death was increased (relative risk = 1.4; 95% CI, 1.0 to 1.8) if staff were not present at the moment of death. Ten percent of the parents (25 of 251 parents) were not satisfied with the care given during the last month at a pediatric hematology/oncology center; the corresponding figure for care at other hospitals was 20% (33 of 168 parents; P = .0163).
  
  
  CONCLUSIONS
  Physical pain and the moment of death are two important issues to address in end-of-life care of children with cancer in trying to reduce long-term distress in bereaved parents.
authors.affiliation: Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology; Karolinska Institutet, Karolinska Hospital, Stockholm. Ulrika.Kreicbergs@onkpat.ki.se
authors.forename: Ulrika
authors.initials: U
authors.lastname: Kreicbergs
authors.forename: Unnur
authors.initials: U
authors.lastname: Valdimarsdóttir
authors.forename: Erik
authors.initials: E
authors.lastname: Onelöv
authors.forename: Olle
authors.initials: O
authors.lastname: Björk
authors.forename: Gunnar
authors.initials: G
authors.lastname: Steineck
authors.forename: Jan-Inge
authors.initials: JI
authors.lastname: Henter
mesh_terms: D000293:Adolescent; D000328:Adult; D001601:Bereavement; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003643:Death; D005260:Female; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000534:rehabilitation; D010146:Pain; D010166:Palliative Care; D010287:Parent-Child Relations; D011787:Quality of Health Care; D011788:Quality of Life; D013315:Stress, Psychological