‘You can’t prepare’: UBC survey on stillbirth, neonatal death aims to help create standard of care

Editor’s note: This article is about stillbirth and neonatal loss, which can be a difficult subject for some readers.

VANCOUVER (NEWS 1130) – A national standard of care for parents grieving the loss of a baby doesn’t exist in Canada, but a new survey out of UBC aims to get the information needed to change that.

“We’re hoping to find out about what families’ experiences are following a stillbirth and/or neonatal death,” Dr. Wendy Hall, a professor at UBC’s school of nursing, explained.

She says hardly any research has been done on what these families go through, noting she has only been able to find one such study out of Ontario.

“That study indicated that they felt stigmatized and they did not always feel that their needs were met,” she said.

There’s currently no standard of care, according to Hall, which means parents are getting a range from sensitive and informed, to harmful and negligent.

“You may get a physician and/or nurse who have become informed about perinatal loss and understand some of the needs of parents … For example, making memories of their baby, taking a lock of hair or handprint or footprint, or having some pictures taken. But you may also well encounter care providers who haven’t knowledge of these things,” she said.

A new study @UBC could shape a national care strategy for parents grieving the loss of a baby

Dr. Wendy Hall says there's nearly no research on what parents go through & support can vary from sensitive to harmful depending on care providers level of understanding. More @NEWS1130

— Bailey Nicholson ???? (@bcjnicholson) July 8, 2021

“One of our team members has had two losses — a stillbirth and a neonatal death — and has said to us that when the pair went for counselling, [they were] asked to leave the room. Really hurtful things have happened to people around these kind of losses,” Hall added.

These are devastating events for families.

“Pregnancy, childbirth, parenting, they’re all viewed as these very positive things where great things happen and people are all excited about the arrival of a baby. People just don’t expect that there’s going to be a loss involved in this … You can’t prepare for a loss,” Hall said.

The mental health ramifications of such a loss can be huge.

“The mental health effects go on for a considerable period of time after you’ve had this loss. They can affect family relationships. They can affect previous siblings. They can affect siblings in the future that are born to the family,” she explained.

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The online questionnaire is open to people aged 18 and up in Canada who have experienced perinatal loss between Jan. 30, 2018, and Dec. 30, 2021. Hall says the findings will contribute to an international study led by researchers in Australia.

The hope is to find out what families are going through and whether they are satisfied with the care and supports they received. The survey asks for experiences with health care providers, religious or spiritual advisors, counsellors, funeral directors, friends and family, and peer support groups.