Design and setting

A mixed-methods quality improvement design using a plan, do, study, act (PDSA) cycle of improvement ²³ was undertaken (Fig 1).

Figure 1. The plan, do, study, act cycle.

The project was conducted over an 18-month period between 2016 and 2018, comprising a 3-month planning phase (August–October 2016) and 12 months implementation (do/study) phase (November 2016–October 2017) at four specialist children’s surgical centres and the University of Worcester. The implementation phase was extended to include stakeholders attending the Little Hearts Matter open day (March 2018).

Funding was received from the Health Foundation ‘Innovating for Improvement’ programme, which aimed to initiate measurable improvement by applying scientific methods within healthcare settings. ²⁴ National Health Service ethical approval was not required as it was assessed as an improvement project in agreement with each of the individual children’s cardiac units’ Quality Improvement Teams and the University of Worcester Institute of Health and Society Ethics Committee.

Planning stage

The “planning” stage included two review phases to meet the first objective:

1. 1. Cardiac nurse specialists meeting to discuss baseline HMP practice in the four centres (phase 1)

At baseline (August 2016), a national HMP did not exist in the United Kingdom for infants with complex CHD. One of the centres did not discharge their fragile infants between stages 1 and 2 of cardiac surgery, resulting in an extended inpatient stay, increased inpatient costs and bed occupancy. Furthermore, whilst the other three HMPs were based on models of care from the United States of America ^{Reference Ghanayem, Hoffman and Mussatto16,Reference Ghanayem, Cava and Jaquiss17} , the Cardiac Nurse Specialist teams identified variations in practice. For example, educational packages were delivered to parents before discharge, but there was a lack of structured assessment of parental/carer suitability for the HMP. Furthermore, only one centre was using the definition of “clinical consultation” to code for income generation.

1. 2. Review of the CHAT ^{Reference Gaskin, Barron and Daniels7} and discussion with paediatric early warning system experts (phase 2)

The project lead (LS) reviewed the original CHAT ^{Reference Gaskin, Barron and Daniels7} ; the “Sepsis 6” ^{Reference Daniels, Nutbeam and McNamara25} and the “fever in the under 5s” guideline ^{Reference Roland, Lewis and Fielding26} and asked clinical experts who had developed the paediatric early warning tool ^{Reference Chapman, Wray and Oulton27} and paediatric observation priority scoring system ²⁴ to review the CHAT. Chapman’s team ^{Reference Chapman, Wray and Oulton27} had identified the importance of “parental concerns” in the assessment of children and young people and during communication with a clinical professional. At the end of this planning stage, the CHAT was modified (CHATm) with addition of a sixth domain “parental response” and changes to the font, size, layout and to some of the wording to reduce complexity and enhance parental understanding (Fig 2).

Figure 2. The modified CHAT (CHATm).

Do stage: The intervention methods and participants

Due to the small number of infants requiring surgery for a functionally univentricular heart annually in the United Kingdom ¹ and going home until the second stage of surgery, the “do” stage was designed to compensate for this by using a variety of implementation measures to test the effectiveness of the CHATm (objective 2).

Phases 3, 4, and 5 are presented in this paper; phases 6 and 7 in paper 2 ^{Reference Gaskin, Smith and Wray28}

1. 3. Case note review using CHATm

2. 4. Tabletop simulation exercise using CHATm

3. 5. Parental use of CHATm at home

4. 6. Clinical simulation exercise

5. 7. Parent simulation workshop

“Study” stage

Phase 3. Case notes review

The review team identified n = 462 documented “clinical consultations” for review, using CHATm. A total of 38 triggers, red (n = 24), and amber (n = 14), were identified. Examples of these triggers are provided in Table 1.

Table 1. Examples of CHATm triggers in clinical records (phase 3)

ANP = Advanced nurse practitioner; A & E = Accident and emergency department; CCN = Children’s Cardiac Nurse; CCNT = Children’s Cardiac Nurse Team; GP = General Practitioner

Phase 4. Tabletop scenarios

Participants (n = 52) included cardiac network nurses (n = 24), medical staff (n = 11), and health care assistants (n = 2); paediatricians with an interest in paediatric cardiology (n = 6) and community nurses (n = 9). Ten scenarios were given to each participant (n = 520 scenarios). In total, 508/520 (99%) scenarios were completed, and all identified the correct green/amber/red trigger for each scenario.

Comments received included: “Easy to use and understand, clear to follow and score” (nurse); “Very useful tool for community support teams” (community nurse); “Great way to work with the family, parent, carer” (HCA); “What happens if you do not speak English or read English?” (HCA2). Other responses related to training and education for staff and parents, escalation process and contacts and clarity of the descriptions in the CHATm (Table 2).

Table 2. Phase 4 Comments about “tabletop scenarios”

Phase 5. Parental use of CHATm at home

During November 2016 to October 2017, parents of infants being prepared for discharge following complex surgery (n = 12) were identified. Six families were assessed by the medical, nursing, and psychology teams as not suitable for participation due to psychological issues (n = 3), their understanding of CHATm (n = 1), or English not first language (n = 2). Six families participated (white British n = 1, white European n = 3, Bangladesh n = 1, Pakistan n = 1).

Most of the parents (83%, n = 5/6) used the management guidance in CHATm appropriately to raise amber and red concerns. The amber triggers (n = 3) initiated contact with the tertiary centre or the Cardiac Nurse Specialist. The red (n = 3) triggers (Table 3) all resulted in hospital review or admission; however, one of these parents phoned the cardiac nurse specialist first before taking their infant to the local hospital. Parents’ feedback regarding their use of CHATm suggested that they found the CHATm training useful before discharge and did not need to use the CHATm every day, only when they were concerned (Table 4).

Table 3. Examples of CHAT triggers for families at home

CCN = Children’s Cardiac Nurse; CNS = Clinical Nurse Specialist; NG=nasogastric

Table 4. Phase 5 Parents’ comments about CHATm

“Act” stage

This QI project evaluated the efficiency, effectiveness, and usability of the CHATm through five intervention phases (3–7). Phase 3 (case notes review) provided active involvement, learning, and exposure to CHATm for the Cardiac Nurse Specialists and Advanced Nurse Practitioners involved in the care of these infants and families, developing their confidence in using the CHATm. Phase 4 participants (tabletop exercise) perceived a benefit of practically using the CHATm through simulation; they recognised how the CHATm could effectively indicate amber and red triggers, the action required and escalated parents’ concerns to professionals. In phase 4, participants identified that robust and nationally agreed training for all staff that will use the CHATm is necessary to ensure successful and complete implementation. Suggestions relating to the definitions and words used within the CHATm and how to fully prepare parents to use the CHATm were also provided.

In phase 5 (parental use of CHATm), a key finding was the need to develop a structured and standardised model to assess parental suitability to go home with the HMP and CHATm. Parents using CHATm explained that whilst they might not use the tool daily, it provided useful knowledge and information prior to discharge from hospital and in preparation for going home. They felt that the tool also supported their decision-making and discussions with health care professionals.

As a result of specific feedback about the content and format of CHATm, further modifications were made, resulting in the creation of a finalised second version of the CHAT in the final “Act” stage of the project (referred to as phase 8). This was called “CHAT2” and is presented in paper 2Reference Gaskin, Smith and Wray ²⁸ .

The expert consensus arising from the discussions (phase 1) led to creation of a standardised “bundle of care” (Fig 3), incorporating three components: parental assessment/education, the HMP and consideration of individual risks. The CHATm was included within each component, which was updated to CHAT2 at the end of the PDSA cycle (phase 8 presented in paper 2). The further development of CHAT2 contributes to the vision to develop robust bundles of care to support acute specialised care in the community setting, using a virtual ward environment and standardising children’s cardiac pathways. ^21,33 It also contributes to setting national cardiac safety standards at discharge. ²⁰ The development and implementation of a National standardised “bundle of care” for these infants need further evaluation.

Figure 3. Bundle of care.

During the ‘Act’ stage, collaboration with the National children’s CHD standards review group was initiated. Preliminary meetings were held with commissioners regarding Univentricular Commissioning for Quality and Innovation ³⁴ and this encouraged involvement of Paediatricians with Cardiac Expertise. The aim of these early discussions was to add the CHAT2 into the Commissioning for Quality and Innovation ³⁴ and expand the remit to support a wider infant group, supporting wider national engagement. In the London network, a dialogue was initiated with the rapid response lead paediatricians for unexpected child deaths regarding the CHAT2 and the proposed Home Monitoring Bundle. The project group engaged with the wider children’s community services, with feedback from paediatricians with expertise in Cardiology, Community Children’s Nurses, Health Visitors, and nursing assistants.

The introduction of electronic records and wider electronic documentation ^{Reference Sipanoun, Oulton and Gibson35} at a national level will be beneficial to communication across all care domains. However, there remains a lack of electronic connections between tertiary and primary care, which makes real-time working a continuous challenge, especially if an infant is sick or deteriorating. It also places increased pressures on the infant’s family to hold health records and specialist knowledge. Development of a mobile application for parents to measure, transmit, and record parent assessment using CHAT2 to the clinical teams through a virtual ward environment ^21,33 would address some of these challenges. Several grant applications since the project ended in 2018 have so far been unsuccessful. Unfortunately, the clinical impact of the COVID-19 pandemic during 2020 and 2021 has further hampered progress in terms of wider communication about the project. Development of a mobile application may also support parental electronic records.

There is potential for translation of CHAT2 into different languages; extension of the tool for all infants and young children being discharged after cardiac surgery; and potential to develop another version for older children following later stages of surgery.