HeartKids are eager to keep our community in the loop on research happening right now — and how you can be part of shaping better support for families. In this article, we share the work of Dr Ashleigh E Butler, who is undertaking important research into the impact that admission to a Paediatric Intensive Care Unit (PICU) has on a child’s siblings. Dr Butler is a registered nurse who has specialised in adult and paediatric intensive care, and is now an ARC DECRA Fellow at La Trobe University.
Each year, around 13,000 children in Australia are admitted to a PICU due to a life-threatening illness or injury. This can be a very stressful time for families, and the social and emotional impacts of having a child with a critical illness in the PICU can affect the whole family unit.
Dr Ashleigh E Butler has been undertaking a research program to learn more about the specific impacts PICU admission can have on siblings. Currently, there is a little known about what siblings experience during this time and what support they need – and Dr Butler’s research program aims to change that.
Knowing more about what siblings of children in PICU experience is the first step in ensuring siblings are well-supported with guidelines, policies and resources.
Dr Butler’s research has already delivered several key foundation studies, including:
Pilot interviews with parents
Interviews with a small group of parents from the CoHD community were conducted to discover more about their experiences and decision-making around bringing siblings to the PICU. This study has helped to identify key timepoints for parental supports, challenges parents experience around siblings and support needs post-PICU visit.
Systematic review
A systematic review of 24 studies was undertaken, to explore what is already known about what siblings experience when they have a critically ill brother or sister. This review highlighted how the sibling experience can be positively or negatively impacted by parents, healthcare professionals, hospital policies and environment.
Point prevalence study
A recently-completed point prevalence study at one Victoria PICU found that two-thirds of PICU patients have siblings, but only a third of those siblings visited during study days. Most siblings visits were by pre-school aged children, and on weekends – when hospital-based supports were less available.
Co-design activities
Over the last two years, this study has closely collaborated with PICU parents and siblings, to ensure that the work performed as part of this project reflects lived experience.
The current stage of this research focuses on understanding the extent, experiences and impacts of sibling inclusion in the PICU. This involves:
- Literature reviews – including a scoping review on how the concept of family is defined in ICU-based, family centred care research, and an ongoing scoping review on parent and family experiences of supporting siblings of critically ill children
- Observational study of sibling visitation – including observations within two Victorian PICUs, and an analysis of PICU visitation guidelines across Australia
- An interview study with siblings (aged 4-18), their parents, extended family members, and healthcare staff across six Australian PICUs
- A mixed methods study to explore sibling wellbeing post-PICU
Once research is complete, the focus will turn to resource development and knowledge translation, to ensure that the findings help drive better support and outcomes for siblings of critically ill children.
This will include working with parents, siblings, clinicians and national stakeholders to co-design national guidelines for the safe sibling inclusion and support in the PICU.
Development of child-friendly resources for siblings and families, to support emotional understanding of their experiences, is also being explored.
Additionally, Dr Butler aims to with community organisations – like HeartKids – to develop content for parents, to help them make decisions about sibling inclusion.
HeartKids are proud to share this important research program, and we eagerly look forward to seeing what develops as the work continues.
If you’re a PICU parent and would like to take part in this research, please contact Dr Ashleigh E Butler: a.butler@latrobe.edu.au
Or register your interest here:
