More than eight out of 10 parents whose child has died said they feel sad that people don’t speak about their son or daughter, a new study into child loss has found.

Some bereaved parents even reported people crossing the street to avoid them and said they have lost friends because people don’t know how to act.

The research – conducted by Derian House Children’s Hospice and thought to be one of the largest studies of bereaved parents in the UK in recent years – found that 87% of parents felt nobody, other than close family, talks about their child anymore.

Researchers at the charity spoke to 70 families whose loss spanned more than 20 years.

The over-riding finding was that bereaved families desperately want you to talk about their child, and that nothing anyone can say will ever be as bad as simply avoiding the subject.

The research has been used by the charity to launch a campaign called “Say my Child’s Name”, which aims to tackle the stigma around child loss.

It has used the families’ own words to create a practical how-to guide for friends and family to help them know what to say and what not to say (see guide here:

A powerful video has also been created to spread the message on social media, which will launch at 9pm tonight. Watch here: Say My Child’s Name – YouTube.

Kiki Deville, Patron of Derian House Children’s Hospice, whose son Dexter died of Zellweger Syndrome in 2007, aged just one month and three days-old, said: 

“When your child dies, after a while nobody says their name anymore, and that really hurts.

“What we desperately want people to know is that speaking about our child won’t upset us or remind us that they’re gone – we are always thinking about them anyway. To a bereaved parent, our child’s name is the sweetest word in the whole world and we love nothing more than speaking about them.”

A total of 89 per cent of parents (62 people) said the effect worsened gradually over time and 64 per cent (45 people) even felt their child had been completely forgotten by family, friends and acquaintances.

59 per cent (35 people) per cent said their workplace didn’t understand. And many said medical professionals did not know how to speak to them sensitively following the loss of their child.

“We’re in a group that nobody wants to be part of,” said one parent in the research. “When I go out with my friends who have children as soon as I talk about my child who has died it becomes so awkward and uncomfortable for them. I feel so out of place at times.”

Derian House Children’s Hospice will use the results of the survey to educate the public and professionals on how they can help bereaved families.

This Christmas the charity is creating free initial stamps to any bereaved parent, to help them remember their child when signing Christmas cards – an area they admitted to struggling with.

Karen Edwards OBE, Chief Executive of Derian House Children’s Hospice, said: 

“We are passionate about breaking down barriers and opening up the conversation around child loss at Derian House. Now, thanks to the generosity and bravery of the 70 families who opened their hearts to speak to us, we have been able to create a practical guide for everyone on how to speak to someone who has suffered the loss of a child.

“Nobody wants to upset someone whose child has died and so many people opt for the safe option and say nothing. What our families have told us is that this is the worst thing they could do – it makes them feel isolated and hurt.

“We are committed to spreading the Say my Child’s Name message, not only to help our families, but also to provide a useful resource for the general public and professionals.”

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