Family initiated escalation of care for the deteriorating patient in hospital: Family centred care or just "box ticking".

Family centred care is a shared belief that a child's emotional and developmental needs are best met when the health system involves the family in planning, delivery and evaluation of care. The important role that families contribute to health care outcomes is emphasised throughout the National Safety and Quality Healthcare Service (NSQHS) Standards. An emerging component is the family's contribution to Rapid Response Systems (RRS) through the early detection of patient clinical deterioration. This initiative has been driven, in part, by a number of high profile paediatric cases where it was identified that healthcare providers did not appropriately respond to families' concerns, resulting in patient deaths. This paper draws together the synergies between family centred care concepts, the NSQHS Standards, and the progress made to date in developing a family initiated process for escalating care with specific reference to paediatric acute care. A number of programs have been developed to guide implementation of family escalation of care. Measures of effectiveness of implementation have mainly focused on policy and process without first understanding barriers or facilitators through engagement with stakeholders and environmental assessment. Two recent reviews have not identified any rigorous attempts to evaluate implementation and only 11 reports are cited across these reviews to date. Evaluation of effectiveness of this complex intervention should take into account process measures of fidelity, dose and reach. There is also a need to assess the impact on families, particularly within a diverse cultural mix. An agreed definition for a paediatric RRS patient outcome measure is essential in evaluating the impact on patient safety and quality. Without this systematic evidence informed knowledge translation approach, then it would appear that progress in implementing family initiated deterioration of condition processes is more about meeting the NSQHS Standards - ticking the box - than genuine engagement with families.