Grief After Pregnancy Loss, Stillbirth, and Neonatal Death

When we lose someone, we love, we grieve. Grief is a natural phenomenon and an expected part of life. Research on grief shows that the vast majority will adjust adequately to the loss, while a few will develop complicated grief reactions, including depression, anxiety, prolonged grief disorder (PGD), post-traumatic stress disorder (PTSD), and in the worst cases, death. In this thesis, the focus has been on two of these grief reactions, PGD and PTSD. PGD is a grief-specific disorder, unlike other disorders such as PTSD. PGD is characterized by longing for the deceased and intense emotional pain with a fixation on grief expressions lasting for at least six months and resulting in significant functional impairment. PTSD is a disorder that can develop as a result of a traumatic event. The disorder is characterized by, among other things, re-experiencing the trauma through nightmares and flashbacks, as well as avoiding situations, places, and thoughts related to the trauma.

We have investigated PGD and PTSD specifically for parents who have lost a child during pregnancy (from gestational week 14), during childbirth, or in the child's first month of life. For this purpose, we used data from a large national questionnaire survey called Life After Loss. This thesis contains three studies. Two of these use data from Life After Loss and examine grief trajectories, risk factors, and care during hospitalization in connection with the loss. The last study examines whether those who participate in Life After Loss are systematically different from those who do not participate by linking Life After Loss to data from Danish registries.

In the first study, we mapped symptoms of PGD at three time points after the loss: 1, 7, and 13 months. We found that 73.1% of parents had a grief trajectory characterized by persistent low symptoms of PGD. In addition, 16.9% of parents had high symptoms of PGD that decreased over time, while 10% had persistent high symptoms of PGD. We also found that it was more likely for those with stillbirths and those who had lost a child in its first month of life to have persistent high symptoms of PGD compared to those who had spontaneous abortions or those who had undergone late abortions due to fetal abnormalities. Persistent high symptoms of grief were also more common among women and among parents who did not have any living children beforehand. 

In the second study, we examined how admission to a specialized unit for bereaved parents compared to standard treatment was related to symptoms of PGD and PTSD as well as the perceived level of support from midwives. Admission to the specialized unit indicated lower symptoms of both PGD and PTSD compared to standard treatment, but we could not demonstrate a statistically significant relationship. Admission to the special unit was related to a very high degree of perceived support from midwives overall and for all types of loss, but this was particularly evident for parents who had experienced stillbirths, with 100% reporting very high support, compared to only 77.5% in standard treatment.

In the last study, we examined participation patterns in Life After Loss. We found a participation rate of 25.7% in the questionnaire sent one month after the loss. Of these, 72.6% participated in the seven-month questionnaire and 59.7% in the 13-month questionnaire. Participation at one month was characterized by fewer men, fewer with low education, and fewer with mental health problems prior to the loss. While men and those with low education continued to be underrepresented in the follow-up questionnaires, the difference related to mental health diminished. We concluded that in studies from Life After Loss, special attention should be paid to these differences in participation, and that results from such studies cannot be directly transferred to other groups.