“We want to include him in that journey”: A qualitative descriptive study of parental experiences and considerations for sibling inclusion in the paediatric ICU

Objectives

Siblings are an important yet often forgotten part of the paediatric intensive care unit (PICU) family experience. Commonly, siblings are supported through the experience by their parents; however, very little is known about parental experiences of providing this support. This study aims to explore parental experiences of supporting sibling inclusion in PICU.

Research methodology/design

This study utilised a qualitative descriptive approach to conduct semi-structured interviews with 6 parents of 5 children with congenital heart disease who had spent time in PICU. Data were analysed using reflexive thematic analysis.

Setting

Australian PICUs.

Findings

Parental considerations and experiences for sibling inclusion were identified across three key phases: Pre-inclusion, The PICU visit, and Post-inclusion. Prior to including siblings in PICU, parents considered various ways of sharing information with siblings, and weighed up the risks and benefits of bringing siblings into PICU. Parents also recounted a number of challenges and facilitators to a positive sibling experience in PICU, including supportive staff and fun activities. Finally, parents, identified that siblings require ongoing support after their inclusion in PICU and made suggestions for ongoing availability of information and supportive resources.

Conclusions

This study has illuminated key parental experiences when supporting sibling inclusion in PICU before, during and after their visit. By understanding these parental experiences, PICU staff can work with and support parents where needed, helping to achieve a positive sibling inclusion experience.

Implications for clinical practice

Parents need ongoing support to explain the PICU to siblings of critically ill children and may benefit from specific visual resources to aid communication. In addition, PICUs should aim to ensure the physical layout is supportive of sibling needs, with dedicated spaces for siblings to play and take time out during their experience.