Doctors should tell parents mourning the loss of a baby to sudden infant death syndrome what they could have done to reduce the risk, a new study suggests.
The findings contradict the current practice of many pediatricians who don’t discuss risk factors for fear of making grieving mothers and fathers even more upset.
Parents appreciate health professionals explaining the role of risk factors is SIDS—and there is no evidence that sharing the information with parents will cause them to blame themselves.
Previous studies have identified several factors that increase the likelihood of SIDS occurring, including infants not sleeping on their backs, parental smoking, head-covering, use of soft-bedding, and co-sleeping on a sofa or with parents who have consumed alcohol or smoke.
With this in mind, reassurances that SIDS is unpreventable and that parental actions and choices have no impact on the risk may no longer be appropriate. “The research highlights the need to talk to parents about how to avoid SIDS,” says Joanna Garstang of the University of Warwick.
“Bereaved parents often blame themselves and feel guilty for these deaths due to the lack of explanation for them but self-blame is also a common feature of grief. Prior to our current understanding of SIDS, recommended practice for healthcare professionals was to reassure parents that their actions played no role in the death as SIDS was neither predictable nor preventable; it was perceived this would help alleviate the parents’ feelings of self-blame.
“As professionals, we need to sensitively share this information about risk factors with bereaved parents. If these aren’t explained to parents they may be more likely to repeat their behavior with their next baby and go through the heartache of losing a child again.”
For the study, published in BMJ Open, Garstang interviewed 21 sets of parents who lost a baby due to sudden death between December 2010 and August 2013. In-depth interviews and questionnaires were used to explore how bereaved parents understand the cause of death and risk factors identified during the legally required investigation following a sudden unexpected infant death. The association between bereaved parents’ mental health and this understanding, and healthcare professionals’ experiences of sharing such information with families was also explored.
More than half the parents interviewed didn’t refer to blame. Three of 21 mothers said they blamed themselves completely for the death and had feelings of over-whelming guilt; two of the infants died of medical causes and one of SIDS.
Notably, all three mothers scored highly for both anxiety and depression but none of the other mothers had clinically significant scores. The families interviewed were a mixture of those who believed they received excellent, good, and poor support from hospitals and healthcare professionals following their child’s death.
“This study suggests that professionals should not be afraid of having these discussions,” says Alison Waite, of the Lullaby Trust, an organization that provides specialist support for grieving families.
“It is not unusual for bereaved parents to experience feelings of blame but the study shows that talking about the risks will not make this worse. It is vital that parents understand the risks, to help prepare them, should they have more children in the future.”
The National Institute of Health Research funded the work.
Source: University of Warwick