King's College London

The researchers worked with children aged between seven and 10 to discuss ideas about health and care and to create recommendations that will support them as siblings of children with life-limiting conditions.

During a five-week series of meetings, the children engaged in philosophical discussions about care and well-being and enjoyed some art-based activities related to the discussions. Conversations over the five weeks informed eight recommendations for ways in which the siblings could be better supported. The recommendations aim to highlight their needs to practitioners in healthcare and education, and to their families.

The recommendations, which are phrased as quotes from the conversations, include:

• “Sometimes we need peace and quiet to think about things ourselves. This can be hard when everything is so busy. Having a space for quiet time is helpful”
• “It’s good to talk to other siblings about our situation if we want, so having space and time for this is important”
• “We enjoy being together to do activities like art or games, so more of this would be great”
• “We understand that our brothers or sisters need a lot of attention from the people who look after us. It’s important that we get time with our parents too.”

A video and booklet outlining the project, titled Because We Care, have been produced in collaboration with the children by the researchers, along with an artist, a filmmaker, and a facilitator of philosophical dialogue. Experts in health, medicine and children’s palliative care and CHAS (Children’s Hospices Across Scotland) were also partners in the project.

Professor Claire Cassidy, of the Strathclyde Institute of Education, the lead researcher in the project, said: “We hear about a lot of research around children who have life-limiting conditions – but we don’t hear about the impact that has on their siblings.

“Because we’re so busy caring for the child with the life-limiting condition, often the siblings are overlooked. Generally, young children’s voices are pretty marginalised as it is and this group is marginalised even further.

“We wanted to understand children’s notions of care and wellbeing...and what was interesting was the connections the children made to one another’s ideas around this.

“They talked a lot about joy in the activities that we did, and wellbeing was about joy, happiness, care and love. They didn’t see themselves as particularly special, but it was clear that there are things they would welcome for themselves.”

Because We Care has been funded by the Arts and Humanities Research Council, which is part of UK Research and Innovation.