Originally published as JCO Early Release 10.1200/JCO.2005.08.557 on September 19 2005

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Care-Related Distress: A Nationwide Study of Parents Who Lost Their Child to Cancer

From the Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology; Childhood Cancer Research Unit, Department of Woman and Child Health; Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Karolinska Hospital, Stockholm; and Division of Clinical Cancer Epidemiology, Department of The Sahlgenska Academy, Gothenburg, Sweden

Address reprint requests to Ulrika Kreicbergs, RN, PhD, Clinical Cancer Epidemiology, Karolinska Institutet/Hospital Z5:U1, SE-171 76 Stockholm, Sweden; e-mail: Ulrika.Kreicbergs{at}onkpat.ki.se

PURPOSE: 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).

CONCLUSION: 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.

Supported by grants from the Swedish Children's Cancer Foundation, the Stockholm County Council, and the Capio's Research Foundation.

Presented in part at the 36th Annual Meeting of the International Society of Pediatric Oncology, Oslo, Norway, September 16-19, 2004, and the manuscript won the Schweisguth Prize 2004 for the best scientific article in pediatric oncology prepared by a trainee, as decided by the Scientific Committee of the International Society of Pediatric Oncology.

Authors' disclosures of potential conflicts of interest are found at the end of this article.

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