Caring Together: Making paediatric palliative care easier to understand

Some things are hard to say in any language. When you’re talking about your child’s life-limiting condition, finding the right words in a language that isn’t your own can feel impossible.

Yody Espitia Buritica understands this intimately. As a Clinical Nurse Consultant at Hummingbird House and a registered nurse from Colombia, she sees how language and culture shape every aspect of care.

“When families don’t speak the language, they really struggle to say what they need to say,” she explains. “Talking about emotions in a language that isn’t your first language is very hard. When I need to say something that’s really hurting me, I will never be able to say it the same in English as I can in Spanish.”

That lived understanding is one reason Yody joined the writing group for Caring Together – An Introduction to Paediatric Palliative Care, a new resource launching soon to support families from non-English speaking backgrounds navigate paediatric palliative care. The booklet has been developed in four versions: English, Easy Read, Arabic and Vietnamese, with the translated versions reviewed alongside community members to help ensure cultural safety and respectful messaging.

Caring for families, not just patients

At Hummingbird House, Yody works with families from diverse backgrounds, and she’s learned that good care means adapting to each family’s cultural context.

“Culture impacts the way you care for children, and how we as health professionals need to tailor the care for them,” she says. “Supporting a family of three people is very different to supporting a family from a culture where 20 people are involved in decision-making for the child.”

Her own cultural background gives her insight into what families might need, and why. In Colombian culture, when something goes wrong, the community rallies. Neighbours, extended family, everyone shows up. It’s not considered intrusive, it’s expected.

“You understand that because you’re the same,” she says. “And even when families do things differently to how we might, that’s just the way they live. Having that insight helps you step back and adapt the care, rather than expecting families to adapt to us.”

This perspective becomes critical when families are already overwhelmed. “You need to adapt and support them however they need, not however we want to or we have the resources for,” Yody says.

Building the resource with community

Yody was part of the multidisciplinary writing group that developed Caring Together, meeting regularly to share feedback, draw on lived experience, and shape a resource that would genuinely support families.

What stood out for Yody was the depth of community involvement. The Arabic and Vietnamese versions were reviewed through focus groups with community members, who helped guide both language and tone.

“All the resources that go into a community need to be created with them, because it’s going to be for them,” Yody says. “Their feedback is so valuable because they actually know what they need, rather than us saying ‘you need this.”

Those conversations unearthed perspectives healthcare professionals might otherwise miss.

“They’ve lived experiences we haven’t. What we see isn’t always what they’re seeing.”

Simplifying words and pictures

Yody says one experience in particular highlights the exact reason resources like Caring Together are important. A grandmother from a non-English speaking background was struggling to understand what was happening with her grandson, and how the team could support her.

“She didn’t speak the language at all,” Yody says. “It was really hard for us to help her understand what was going on, how we could support her.”

Moments like these shaped what Yody advocated for in the resource. Clear language. Strong visuals. Formats that are easier to absorb and don’t overwhelm.

“Having that easy read, easy language, easy English, words that are easy for people to understand and to make sense of what is happening in a really difficult moment of their lives,” she says.

When a child enters palliative care, clarity becomes essential. “On top of all that is happening in their heads, which is a lot, they can’t think clearly. If you have a resource that you can look at, this is what is happening step by step, then people can make sense of it all.”

“I haven’t seen a resource that’s this easy to read and this comprehensive for families with children living with life-limiting conditions,” she says.

Offering understanding

When Yody imagines a family opening the Caring Together for the first time, she hopes it gives them clarity.

“I hope it helps families understand what palliative care actually is and how it can support them,” she says. “So it’s not, ‘We’ve been referred to palliative care, my child is dying today, tomorrow. It’s not necessarily like that.”

The booklet reflects a phrase Yody learned from palliative care expert Dr Anthony Herbert: hope for the best and plan for the rest.

“It offers a different hope,” she says. “Being referred to palliative care doesn’t mean a child will die tomorrow. It’s so they get more support for their life-limiting journey.”

Caring Together is now available in English, Easy Read, Arabic and Vietnamese. Click here to learn more and order your free copy.