Care-related distress: a nationwide study of parents who lost their child to cancer.
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.
Kreicbergs
Ulrika
U
Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology; Karolinska Institutet, Karolinska Hospital, Stockholm. Ulrika.Kreicbergs@onkpat.ki.se
Valdimarsdóttir
Unnur
U
Onelöv
Erik
E
Björk
Olle
O
Steineck
Gunnar
G
Henter
Jan-Inge
JI
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