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Plymouth Interdisciplinary Education Open Journal

Abstract

There are currently approximately 99,000 babies, children and young people living with life-limiting conditions (LLCs) in the UK alone (Together for Short Lives, 2025b). Many of these young people will have siblings who are navigating the opportunities and challenges of having a sibling with an LLC. Despite this, there is a stark lack of research investigating the impact of being one of these siblings. As a result, this combined autoethnographic and qualitative enquiry will aim to provide an insight into how young people’s experiences of being a young carer to a sibling with an LLC impacted different elements of their experience of secondary school. It also aims to achieve an understanding of their needs during this time and how these were acknowledged and supported by their school. The study’s results highlighted the educational difficulties that they faced, and need for active support to be provided to these siblings. They also revealed the strong sense of responsibility that they feel towards their family and unwell sibling, which often resulted in the masking of emotions for fear of adding to their family’s burdens. Previous literature into the experiences of siblings of children with LLCs reflects these findings. Several research avenues for further exploration were also unveiled, such as the role of hospice care in sibling support, as well as the impact of anticipatory grief in the wellbeing of siblings.

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