Time 4 siblings: an exploration of the experiences of siblings (aged 6-12 years) when a brother or sister is diagnosed with Acute Lymphoblastic Leukaemia (ALL) to inform the development of an intervention

Each year, in the UK, over 400 children are diagnosed with Acute Lymphoblastic Leukaemia (ALL). Improvements in prognosis and treatment mean there has been a significant increase in survival rates. One of the main concepts of children and young people’s nursing is family centred care. The family are an essential aspect of care, maintaining normality and continuity for the unwell child. A cancer diagnosis therefore impacts on the whole family, changing daily routines through disruption from intensive hospital and home-based treatments.

Grandparents, relatives, and significant others often play a crucial role within a family. When a child is diagnosed with cancer, they may take on a greater role in supporting parents and siblings. Research exploring the impact of a cancer diagnosis has considered the perspectives of the child with cancer and the parents. But there is limited research exploring the experiences of siblings, mostly only proxy reports from parents. Very little research hearing from siblings themselves has been undertaken in the UK. From the research there is, we know that siblings who have a brother or sister with cancer can have a complex and multi-dimensional level of adjustment. Current interventions for siblings range from individual, group, and camp interventions varying in format, objectives, settings, and placement in the cancer trajectory. Research indicates positive effects from interventions for siblings of children with cancer and their parents. However, more research is needed to find ways to improve support for siblings of children with cancer in the UK which draws on their insight.

This research aims to explore the experience of siblings (aged 6-12) when a brother or sister has cancer, to inform the development of an experience-based intervention to offer improved support to this population in the future. A longitudinal, qualitative, participatory collective case study design will be used. A range of visual, written and digital arts-based techniques with interviews from siblings to elicit their experiences and interviews with parents, grandparents and significant others will be undertaken to illuminate the sibling experience. These findings will then be used to inform the development of a targeted intervention for siblings.

This study aims to inform the development of an intervention for siblings (aged 6-12 years) when their brother or sister has been diagnosed with ALL.

To achieve this, there are four interlinked objectives to:

1. Identify, understand and explore the experiences of siblings aged 6-12 years following a diagnosis of ALL in their brother or sister.
2. Identify, understand and explore parent perspectives of the experience of siblings aged 6-12 years following a diagnosis of ALL in their brother or sister.
3. Identify, understand, and explore grandparent/ significant other perspectives of the experience of siblings aged 6-12 years following a diagnosis of cancer in their brother or sister.
4. Utilise the findings of objectives one, two and three to inform the development of a targeted intervention to support siblings aged 6-12 years when a brother or sister is diagnosed with ALL.