Coping of parents and siblings with the death of a child with cancer: death after terminal care compared with death during active anticancer therapy

• Published in: Acta pædiatrica (Oslo) 2000-06, Vol.89 (6), p.717-721
• Main Authors: SIRKIÄ, K, SAARINEN-PIHKALA, U. M, HOVI, L
• Format: Article
• Language: English
• Subjects: Adaptation, Psychological; Adult; Anesthesia. Intensive care medicine. Transfusions. Cell therapy and gene therapy; Bereavement; Biological and medical sciences; Caregivers - psychology; Child; Clinical death. Palliative care. Organ gift and preservation; Death; Family Relations; Female; Humans; Male; Medical sciences; Middle Aged; Neoplasms - psychology; Neoplasms - therapy; Nuclear Family - psychology; Parents - psychology; Retrospective Studies; Terminal Care
• ISSN: 0803-5253; 1651-2227
• DOI: 10.1080/080352500750044070

Seventy pediatric patients with cancer treated at the Hospital for Children and Adolescents, University of Helsinki, Finland, died while in terminal care and 30 children of therapy-related complications during active anticancer therapy in the period 1987-92. The purpose of this study was to compare these groups and characterize the main problems of the families during the mourning process. The method of evaluation was a structured interview of every parent separately. Parents of 60/70 children after terminal care, and parents of 26/30 children who died during active anticancer therapy, were interviewed. Unexpectedly, differences were minimal between families who lost a child after terminal care and those whose child died during active anticancer therapy. Parents reported physical and/or mental problems with similar frequency (39% and 34%); average self-reported recovery times were similar (14 and 16 mo); return to work was similar in both groups, 70% returning doing so within 1 mo. However, pronounced differences were observed between the mothers and the fathers; the mothers requiring longer recovery times and returning to work later. Of the siblings, 18% in the terminal care group had problems compared with 32% in the active therapy group. These included fear, behavioral problems, problems with friends and school-related problems. In conclusion, when a child with cancer dies, the ability of the respective families to cope does not seem to differ whether the child dies after terminal care or during active anticancer therapy. The inevitable loss of the child is the major event. Most parents and siblings have the potential and ability to recover normally after the death of a child, although they will never be completely the same.