Predictors and consequences of loss of a child : nationalwide epidemiological studies from Sweden

Abstract

In four different studies, we investigate loss of a child and aspects of care that influence mental health in bereaved parents. An underlying goal of these studies was to identify risk factors that can be influenced by health care practices to avert adverse health consequences.

In the first study we examined adverse birth outcomes and their relationship to subsequent risk of stillbirth. Stillbirth shares etiology with small-for-gestational age and preterm birth, outcomes that tend to repeat in successive pregnancies. Data for this study, from the Swedish National Birth Register, included 410,021 women who delivered their first and second consecutive singleton births between 1983 and 1997. We found that compared with women with a previous non-small-for-gestational age birth delivered at term (37 weeks or more), the risks of stillbirth were increased among women with previous term and preterm small-for-gestational-age births. This risk was even further increased when the previous birth was both small-for-gestational age and preterm.

The second study focused on how the management of stillbirth and support a woman receives may be associated with later depression. For this investigation we used the Swedish Birth Register to identify women with stillborn children in 1991. The study included data from 314 eligible women nationwide who agreed to participate. We found a strong relationship between the baby's father refusing to talk to the mother about the stillbirth and her depressive symptoms three years later. Women who could talk to the baby's father about the child had a lower likelihood of later depressive symptoms. The way in which the stillborn child was discussed also appeared to be important; women who had talked to someone who referred to the stillbirth as a miscarriage were at increased risk for depressive symptoms. Finally, a mother's report of not being with the infant in the hospital for as long as she wished was associated with later depressive symptomatology.

The third study identified aspects of care that put parents at risk for having guilt feelings in the year after a child's death to cancer. Parental feelings of guilt after the death of a child are common. The Swedish Cause of Death Register and Cancer Register were used to identify all parents in Sweden who had a child who died of cancer between 1992 and 1997. Data were analyzed both in the complete cohort of 449 parents and in a subset of parents who did not report recent depression. Among parents not reporting recent depression, most strongly associated with later guilt were parents' lack of confidence that their child would immediately get help from the hospital staff while he or she was sick; feelings that the staff in the pediatric cancer ward were incompetent; and belief their children had had little or no access to pain relief, dietary advice, anxiety relief, and relief of other psychological symptoms beside anxiety.

In the final paper, we assessed the relationship between parental awareness of die child's impending death and location of a child's end-of-life care and death. We also examined symptom relief relative to location of child's care and death. Although end-of-life care at home is considered desirable to most families, only some children are cared for at home when dying of a malignancy. We were interested in why certain parents care for their child at home and if location of care was associated with relief of pain or other symptoms. Using the same data as in the third study, we found that parents who were aware that their child would die from a malignancy were more likely to care for their child at home during the child's last month of life. Home care appeared to be equivalent to hospital care in terms of satisfactory pain-relief as well as access to relief of other physical and psychological symptoms.