A multicentre pragmatic randomised controlled trial for reducing stress in parents of children recovering from life-threatening illness. The DAISY study.

Chief Investigator

Associate Professor Debbie Long RN PhD

Academic Institution

QUT School of Nursing

Date of Endorsement

11/05/2023

Outline

Each year, over 12,000 children are admitted to the paediatric intensive care for a life-threatening illness or injury1, 10-fold that of paediatric oncology diagnoses2. Despite low mortality rates (2.3%), survival and recovery are hampered by new and ongoing impairments. These impairments are experienced across physical, cognitive, emotional and social domains and are reported to affect 40% of children3. Caring for a child who has survived a critical illness is also very challenging for parents, who report increased stress, anxiety, depression4, 5 and post-traumatic stress6-8, and decreased coping and resilience9, 10, affecting their capacity to effectively parent and care for their child during their recovery. This represents a significant developmental risk for highly vulnerable children, augmenting the burden of disease on family and society, which in turn impacts school, social performances and activities of daily living, with additional lifetime risks for employment, family functioning, and quality of life11-13. Paediatric intensive care units (PICUs) provide 24-hour care and treatment for children who are seriously injured, have a life-threatening illness or have undergone major surgery. Despite diverse diagnoses, all have the vital need for life-saving and intense respiratory, circulatory and medical support in common. Despite this life-saving care being vital and unavoidable, the environment, treatments and experience become an adverse childhood event for children14. The parent-child relationship is critical to the recovery of the child, as it is one that nurtures the physical, emotional and social development of the child15. The need for effective parent interventions to minimise parenting stress is undeniable.

OUR VISION is to help all children and their parents navigate and optimise recovery from critical illness; by developing targeted interventions to improve outcomes, in consultation and engagement with consumers, through innovative research design, and the implementation of research evidence. Through this our goal is to build clinician researcher capacity and capability by maintaining strong partnerships with health systems and their providers.

Our STUDY AIM is to evaluate a bundle of nurse-led evidence-based practices to minimise stress in parents following their child’s life-threatening illness or injury: the DAISY intervention.

Objectives:
1) To evaluate effectiveness of the nurse-led DAISY intervention in multiple Australian PICU settings and the impact on parent and child outcomes using a pragmatic hybrid-2 effectiveness implementation randomised controlled research design.
2) To determine the adoption, fidelity, acceptability, appropriateness, feasibility and cost-effectiveness of implementing the nurse-led DAISY intervention.