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A lesson in death: why bereavement should be on the school curriculum

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A lesson in death: why bereavement should be on the school curriculum

When seven-year-old Mariya’s older brother died of a rare brain condition, it was like he had vanished.

“She never even saw him in the hospital. We always thought he’d get better and he’d come back home, so literally, it was for her as if he’d just suddenly disappeared,” says mum Sameena Javed. “She saw him off to karate one day and the next time she saw him, he was in a box.”

Ahmar died from a brain bleed caused by an abnormal connection of veins and arteries at just 13-years-old. He spent 10 days at the Royal Hospital for Children in Glasgow after the first bleed. On the ninth day, he had another.

“This time they said it was worse than the first one. Un-survivable, they said. They said we should switch off the machines,” recalls Javed. “On the 30th April, he passed away just after midnight and by lunchtime that day, we’d buried him. It was that sudden.”

The struggle to get support for her daughter Mariya, at the same time as dealing with her own grief, dominated the weeks and months that followed. New analysis of the Growing Up in Scotland data shows Mariya is not alone: by the age of 10, the majority of children will have experienced a bereavement.

And so Javed has a plan. She is petitioning for bereavement education to be made compulsory in schools.

“If children have a better understanding of bereavement, the feelings surrounding bereavement and grief, if it unfortunately were to happen, they might be ever so slightly better prepared for it,” she argues. “It might not affect them as badly as it would, for example, had they been totally unprepared for it – like my daughter was, like we were.”

As it stands, the words ‘death’, ‘grief’ and ‘bereavement’ do not appear in the Scottish curriculum. Instead, children are taught about ‘loss’ and ‘change’. While this can cover death, it becomes a question of interpretation. Dr Sally Paul, a lecturer in social work with expertise in death and dying, explains: “We know from some of the research I’ve done that’s not how it [the curriculum] is sometimes interpreted. Children will talk about transitions to different classes, talk about that as loss and change which it absolutely is – but that’s an easier conversation to have than loss and change through death.”

Paul says it is important to give all children the skills to manage different kinds of loss, including grief. “There’s lots of examples of this starting to happen, which is why the petition is quite exciting because it’s still not formally recognised on the curriculum. It’s usually done in an ad hoc way, depending on individual teachers or individual schools. There’s a disparity in what support children get, in what education they get.”

Not teaching about death closes off an opportunity to talk about it. Children learn it is a subject not to be discussed. Questions go unanswered, feelings get buried and, in the long run, society suffers.

Paul spotted the gap several years ago while working as a hospice social worker and receiving referrals from schools before anyone had even spoken to a child about the death. “The person didn’t always need specialist support. They needed people within their own network to say I’m really sorry to hear that happened,” she says.

It’s about creating a culture that is open to talking about and engaging with death and loss, so that children know what grief looks like

This is how the Resilience Project came about. After speaking to 9-12 year-olds, Paul developed a framework to support schools to talk about death. Across five lessons taught at P6 and again at P7, St Francis Xavier’s RC Primary School in Falkirk now introduces death as a part of life, teaches skills to cope, and develops an awareness of the needs of others after a death. The project is in its eighth year.

Paul says: “It’s about creating a culture that is open to talking about and engaging with death and loss, so that children know what grief looks like. They know how to engage with each other on those issues so that if a child comes to their class who has been bereaved, they’re not going to surround them in the playground and go ‘What happened to you? Where were you?’ They are more prepared to respond in a way that’s helpful and supportive for that particular child.”

The project doesn’t just help pupils and teachers either. Parents have welcomed it too. Despite some initial hesitancy about the appropriateness of bringing such a difficult subject into the classroom, it has “opened the door to parents coming in and sharing their concerns, asking advice,” says Paul.

This illustrates how schools are central to communities. They need to be able to build relationships and trust with parents and caregivers, which in practice means not just isolating bereavement to the curriculum but also having wider policies in place.

Child Bereavement UK’s director of development in Scotland, Richard Stafford, believes having a bereavement policy in every school would be a great help.

He says: “I’ve always felt that bereavement doesn’t really have its own particular place. We accept that it’s the ultimate statistic, but we don’t really deal with it until it happens. I’m talking about society – and school is a reflection of that. They don’t deal with it unless they have to respond to it. If you’re not prepared, that response will be along the lines of panic. Some thinking about it prior to it happening, I think, has got to be a good thing.”

Ideally, these policies would act as a form of early intervention, helping proactively to support a bereaved family rather than only reacting when behaviour at school becomes a problem. “By the time we get to that stage, we’ve often really missed the story,” Stafford says.

Policies would help raise awareness among members of staff to ensure every child receives the best support. “It’s not just about teachers, though teachers are often appropriate, when I talk about staff in a school,” Stafford adds. “I’m talking about the dinner lady, I’m talking about the caretaker – they could be the key people, they could know more about a child than anyone.”

This principle is contained within NHS Greater Glasgow and Clyde’s mental health improvement and early intervention framework. It is known as the One Good Adult concept – an acknowledgement that having a dependable adult is a key indicator of how a young person copes with difficult situations, including grief.

Having such social and personal support reduces the risk of needing specialist intervention further down the line. Without it, a bereavement can lead to a range of emotional, physical and social problems frequently linked to adverse childhood experiences (ACEs).

The risk of early death, suicide, developing a psychiatric disorder, offending and leaving school without any qualifications is considerably higher among children who are bereaved of a parent, according to data collected by the Childhood Bereavement Network.

Stafford says: “Ultimately for young people, not everyone needs one-to-one support or group support, but where support is needed or where a bereavement has not been dealt with in a healthy way, it can ruin lives. Substance misuse, attainment levels, mental health issues.

“Grief in itself, bereavement, is not something that we want to pathologise. But we’ve got to support it where that support is needed because it can lead to really serious outcomes which impact the whole of society.”

The Scottish Government has not been blind to these issues. In 2016, it recognised the need for a review of bereavement support for children and young people. At the end of last year, a tender was put out for a project to find where the gaps in services are and, importantly, what to do about it.

Includem won that tender and in March 2020, the organisation took charge of the national childhood bereavement coordinator programme. After some initial problems owing to the pandemic, Denisha Killoh was appointed as the project lead in September. She will consider the entire cross-sector landscape, of which education is a major part.

Killoh says: “It’s obviously a massive area and a massive thing that’s come up so far in our research. We have made initial connections with people in the education sector. A lot of nationwide bereavement network groups have representation from education – specific people that have vast amounts of experience in that field.”

She is also seeking the views of young people who have experience of bereavement. This is not without its problems, as having to do this socially-distanced and over video calls makes it even more difficult to create the kind of strong relationship you need to encourage a young person to be open.

“If it wasn’t coronavirus time, I’d be up and down Scotland, going to speak to people constantly. That is something I would love to be doing and I would love to be able to go anywhere where there was a need for people to be heard. That is the biggest barrier we’re going to come up against,” she adds.

As harsh and upsetting as it might seem, death and bereavement will happen to everybody and we need to be prepared for it

But one of Killoh’s strengths in this project is that she has her own experience of childhood bereavement. Her mum died when she was 14, which also impacted her adoption. She says: “When I go speak to people who have experienced bereavement, they know it’s not just another person coming in to take a consultation of their views and leave them. I can relate to them, which so far, the people I’ve engaged with have really appreciated that.

“This is something that happened to me personally, but it is also about how can I channel that into the wider picture? It’s my passion and personal experience and everyone else’s personal experience that I’m championing for change and reflecting the views of the wider community.”

Killoh recalls a lack of formal support within her school – but she speaks highly of a guidance teacher with whom she had a strong connection. “I could always go into her office at lunch and speak to her about anything, have a chat, and she was really, really helpful.”

But Killoh knows this is not the experience of everyone. She says: “Obviously, it will always be hard, especially for children, to be able to understand [death]. But if we’re preparing for it, if we’re talking about it constantly, if there’s stuff in the curriculum, we’re able to prepare and support the school and community a lot more. That’s something I’ve heard from a few people in the sector.”

How to prepare children and what form that should take in a school environment is a tricky issue. The Scottish Government prefers to steer clear of mandatory topics because, as it said in a written submission to MSPs regarding Sameena Javed’s petition, the Curriculum for Excellence is a framework “available for schools and local authorities to adapt at individual school level as appropriate and in response to the needs of each individual school.”

Despite this, the Public Petitions Committee has opted to explore this issue a little further before making any decision on Javed’s campaign. Perhaps this is a recognition that death-denying in schools does no one any good. As Javed put it: “As harsh and upsetting as it might seem, death and bereavement will happen to everybody and we need to be prepared for it.”

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