Acceptability of a parental early warning tool for parents of infants with complex congenital heart disease: a qualitative feasibility study

Abstract

The study highlighted the benefit of appropriately preparing parents before discharge, using the CHAT, to enable identification of normal infant behaviour and to detect signs of clinical deterioration. The study also demonstrated the importance of providing parents with information about when and who to call for management advice and support.

Severe illness getting noticed sooner – SIGNS-for-Kids: developing an illness recognition tool to connect home and hospital

“…This is the first tool created using an established development methodology that addresses the undifferentiated populations of children. Other tools have been created for patients with specific diseases (asthma management plan)29 or broader populations of high-risk patients (cyanotic heart disease) 30. The SIGNS-for-kids tool is intended to provide a comprehensive set of items describing severe illness in children with and without comorbidities across the spectrum of age and development anticipated in the paediatric population.…”

“…Selected pre-reading material was distributed to panel members to provide context on the topic of symptom recognition in different scenarios by parents and lay care providers. The material included several published symptom checklists of severe illness designed for lay people and articles describing important signs and symptoms of severe infection in infants and the use of parental early warning scores in infants with complex congenital heart disease 28 30 36. Initial evaluation of the construct validity of the SIGNs-for-Kids tool planned for an informal review of 10 randomly selected paediatric case files held by HIROC of delayed recognition of severe illness causing death or disability that resulted in legal claims.…”

“…Family triggered activation of medical emergency teams is integrated into many paediatric hospitals25 26 and family assessment is acknowledged in the safety literature as paramount in illness recognition requiring urgent medical attention 13 27. In outpatient settings, symptom checklists,28 illness severity action plans29 and parent early warning scores30 have been described predominantly in selected populations with known disorders and more predictable symptoms. A parent early warning score for infants with complex congenital heart disease has demonstrated good acceptance and feasibility by parents but requires attention to parent preparation and confidence in the use of the instrument 30.…”

“…In outpatient settings, symptom checklists,28 illness severity action plans29 and parent early warning scores30 have been described predominantly in selected populations with known disorders and more predictable symptoms. A parent early warning score for infants with complex congenital heart disease has demonstrated good acceptance and feasibility by parents but requires attention to parent preparation and confidence in the use of the instrument 30. These examples demonstrate that an understanding of the signs and symptoms of severe acute illness progression and the populations at greatest risk are important.…”

Care of infants, children and adults with congenital heart disease

“…In response to this need for better information, an early warning tool for parents and carers called the Congenital Heart Assessment Tool [CHAT], was developed as a targeted intervention (Gaskin, Barron & Daniels, 2016;Gaskin, Wray & Barron, 2018). Communication, including ongoing support of the child and family/carers, provision of individualised information and involvement of the child and family in decision making at every stage of care provision (NHS England 2016), is a significant aspect of the family-centred care provided by children's cardiac nurses.…”