Families say pregnancy and infant loss support services need improvement
A recent survey highlights the need for health-care providers in Ontario to improve care for families experiencing the loss of a pregnancy or the death of an infant.
The online survey asked families about the quality and types of support they received from health care providers. Respondents included those who had experienced a pregnancy or infant loss, or were partners of those experiencing the loss. Led by Dr. Jo Watson, Operations Director and nurse practitioner, Sunnybrook’s Women & Babies Program, 596 responses were received which will guide the development of a provincial plan for the Pregnancy and Infant Loss Network (PAIL Network). PAIL Network is a provincial program funded by the Ministry of Health and Long-Term Care to provide peer-led support to families who experience the loss of a pregnancy or infant and to provide education to the health care providers who care for them.
“After a loss, timely, compassionate, individualized and skilled support is important for families,” explains Michelle LaFontaine, Program Manager, Pregnancy and Infant Loss Network. “Parents seek support and reassurance from health care providers, but as the survey revealed, these interactions did not always meet the needs of families.”
At the time of their loss, only 43 per cent of families felt they were treated with kindness and respect, with only 28 per cent receiving the information they needed from their health care provider. The survey revealed the greatest opportunity is to improve care for families experiencing first trimester loss.
The survey drew feedback from partners like Dennis Woo in Toronto, whose lost a son at 23 weeks of pregnancy. “As a dad, I felt completely helpless. I’ve spoken with many fathers who feel they need to be ‘the strong one’, but partners also need to give themselves permission to grieve and should be encouraged to use support services.”
The survey garnered responses from across Ontario, from families experiencing losses at every stage of pregnancy, as well as those who have lost a child from sudden infant death syndrome, or SIDS.
“After I delivered my full-term daughter, who was stillborn, I was placed in a maternity ward with new mothers and babies,” says Heather Ricard, who has also experienced a first and second trimester loss, and now acts as a PAIL peer support volunteer in Kenora, Ontario. “I was fortunate to have a midwife who advocated for me, but not every family has this support during an extremely traumatic time.”
Full survey results are available here. More information on how families in Ontario can receive support is available here.
Click to view plain-text version of the infographic
Pregnancy and infant loss support in Ontario
Each year, one out of four pregnancies ends in a loss.
There are 700 stillbirths in Ontario every year.
Sudden infant death syndrome, or SIDS, is the leading cause of death among Canadian babies from a month to a year old.
We asked parents and families to share their experiences.
There was very little information about how families in Ontario access support after experiencing a pregnancy loss or the loss of an infant.
A survey was launched to guide the development of a provincial plan by the Pregnancy and Infant Loss Network (PAIL Network), to improve and expand services provided to families across Ontario.
We asked:
What was your experience at the time of your pregnancy or infant loss?
How do you perceive the support provided by health care providers at the time of your loss?
596: number of responses
Parents and families told us about:
- Care at the time of the loss
- Care at the follow-up appointment
- Sources of support
What we learned:
- 53% of parents and families did not feel they were treated with kindness and respect at the time of loss
- 72% did not receive the information they needed from health care providers
Families identified the need to:
- Reduce stigma and silence about pregnancy and infant loss
- Develop an automatic referral to bereavement or counselling support
- Raise public awareness and education about existing supports
We can do better:
After a loss, timely, compassionate, individualized and skilled support is important to families. While parents often seek support and reassurance from their interactions with health care providers, they reported these interactions didn't meet their needs. PAIL Network is committed to improving care for families in Ontario.
