Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study

SummaryBackgroundWe aimed to study care-related determinants of when parents gain awareness of their child's impending death to cancer, and whether the duration of this awareness affects the parents' long-term morbidity.MethodsBetween August 2001 and October 2001, 449 of 561 (80%) parents who had lost a child due to any malignancy in Sweden between Jan 1, 1992, and Dec 31, 1997 (identified on the Swedish Causes of Death Register), answered a 365-item postal questionnaire designed to ascertain when, before the child's actual death, they had become intellectually and emotionally aware of the child's impending death (awareness time). The primary endpoints were intellectual awareness time (defined as time between intellectual realisation that a disease is fatal and the actual time of death) and emotional awareness time (defined as time between emotional realisation that a disease is fatal and the actual time of death). Parents' awareness of less than 24 h was referred to as a short awareness time.Findings436 parents answered the question about intellectual awareness and 433 parents answered the question about emotional awareness. 112 parents (26%) reported a short intellectual awareness time and 195 parents (45%) reported a short emotional awareness time. The risk of having short intellectual awareness time was increased if parents had absence of information on their child's fatal condition (mothers relative risk [RR] 3·6 [95% CI 2·3–5·5]; fathers 2·9 [1·8–4·5]) and if curative treatment was used towards the end of life (mothers 4·1 [2·6–6·5]; fathers 2·7 [1·7–4·2]). The risk of short emotional awareness time was increased if parents had absence of information indicating the child would die (mothers 1·5 [1·1–2·0]; fathers 1·8 [1·3–2·5]) and absence of talks about death with the other parent (mothers 1·5 [1·1–2·0]; fathers 1·7 [1·2–2·2]). Compared with fathers who had longer emotional awareness time, fathers with short emotional awareness time had an increased risk of depression (adjusted RR 1·8 [1·0–3·3]) and absence from employment due to sick leave or early retirement (RR 8·5 [1·1–67·8]) at follow-up. This difference was not noted for mothers.InterpretationHealth-care professionals can influence parents' intellectual and emotional awareness of a child's impending death due to cancer. Short emotional awareness increases the risk of long-term depression in bereaved fathers.