To characterise the current approach to sedation, analgesia, iatrogenic withdrawal syndrome and delirium in paediatric cardiac ICUs.

A convenience sample survey of practitioners at institutions participating in the Pediatric Cardiac Critical Care Consortium conducted from September to December 2020.

Paediatric cardiac ICUs.

Survey responses were received from 33 of 42 institutions contacted. Screening for pain and agitation occurs commonly and frequently. A minority of responding centres (39%) have a written analgesia management protocol/guideline. A minority (42%) of centres have a written protocol for sedation. Screening for withdrawal occurs commonly, although triggers for withdrawal screening vary. Only 42% of respondents have written protocols for withdrawal management. Screening for delirium occurs “always” in 46% of responding centres, “sometimes” in 36% of centres and “never” 18%. Nine participating centres (27%) have written protocols for delirium management.

Our survey identified that most responding paediatric cardiac ICUs lack a standardised approach to the management of analgesia, sedation, iatrogenic withdrawal, and delirium. Screening for pain and agitation occurs regularly, while screening for withdrawal occurs fairly frequently, and screening for delirium is notably less consistent. Only a minority of centres use written protocols or guidelines for the management of these problems. We believe that this represents an opportunity to significantly improve patient care within the paediatric cardiac ICU.

To examine the strengths and opportunities for improvement of current home care education practices to inform the development of the Home Care for Heart Health intervention, and to develop a web-based intervention for parents and clinicians with complimentary print materials that could provide the right education at the right time to foster a safer transition from hospital to home.

An inter-professional focus group of parents, clinicians, and designers was formed to co-create a home care education intervention for parents of children with congenital heart disease (CHD) and their care team. We used the Integrated New Product Development process model created by Jonathon Cagan and Craig Vogel at Carnegie Mellon University to develop the intervention. This process model is a way of thinking that combines horizontal and inter-disciplinary teams, stakeholder-centric focus, and a system of qualitative discovery and development evolving towards quantitative methods of refinement.

Our team developed the Home Care for Heart Health intervention. The evidenced-based intervention includes a quick reference guide for parents of children with CHD, an accompanying app, family-friendly pathways, and clinician education.

Using an inter-professional approach, our team of clinicians, parents, and design experts were able to co-create a clinician–parent home care education intervention with broad application and lifelong relevance to the Congenital Heart Disease Community.

Our intervention has the potential to be used as a model for other home care education interventions for parents of children with chronic illnesses.

In many developing countries, children with CHD are now receiving surgical repair or palliation for their complex medical condition. Consequently, parents require more in-depth discharge education programmes to enable them to recognise complications and manage their children’s care after hospital discharge. This investigation evaluated the effectiveness of a structured nurse-led parent discharge teaching programme on nurse, parent, and child outcomes in India.

A quasi-experimental investigation compared nurse and parent home care knowledge before and at two time points after the parent education discharge instruction program’s implementation. Child surgical-site infections and hospital costs were compared for 6 months before and after the discharge programme’s implementation.

Both nurses (n=63) and parents (n=68) participated in this study. Records of 195 children who had undergone cardiac surgery were reviewed. Nurses had a high-level baseline home care knowledge that increased immediately after the discharge programme’s implementation (T1=24.4±2.89; T2=27.4±1.55; p<0.005; 30 point scale), but decreased to near baseline (T3=23.8±3.4; ns) 4 months after the programme’s implementation. Nurse teaching documentation increased by 56% after the programme’s implementation. Parent knowledge scores increased from 1.76±1.4 for Cohort 1 to 3.68±0.852 for Cohort 2 (p<0.005; 0–4 scale) after the discharge programme’s implementation. Surgical-site infections decreased from 27% in Cohort 1 to 2% in Cohort 2 (p>0.05) after the programme’s implementation.

Nurse, parent, and child outcomes were improved after implementation of the structured nurse-led parent discharge programme for parents in India. Structured nurse-led parent discharge programmes may help prepare parents to provide better home care for their children after cardiac surgery. Further investigation of causality and influencing factors is warranted.

Parents of children with CHD require home care knowledge in order to ensure their child’s health and safety, but there has been no research on how to achieve this in a resource-constrained environment. The aim of this investigation was to compare parent and nurse perceptions of parent readiness for discharge after a structured nurse-led parent discharge teaching programme in India.

A pre-post design was used to compare parent and nurse perceptions of parental uncertainty and readiness for hospital discharge before and after introduction of the parent education discharge instruction programme in a paediatric cardiac surgery unit.

Parents (n=68) and nurses (n=63) participated in this study. After the discharge programme implementation, parents had less uncertainty (M=93.3 SD=10.7 versus M=83.6 SD=4.9, p=0.001) and ambiguity (M=40.8 SD=6.8 versus M=33.4 SD=3.7, p=0.001) about their child’s illness; however, they rated themselves as being less able to cope with the transition to home (M=24.3 SD=4.1 versus 23.1 SD=2.2, p=0.001) and as having less support at home than that required (M=31.5 SD=9.9 versus 30.9 SD=3.2, p=0.001). Parents’ and nurses’ perception of parental readiness for hospital discharge were more closely aligned after implementation of a nurse-led discharge programme (r=0.81, p=0.001).

The results of this study suggest that the discharge programme had positive and negative effects on parental perceptions of uncertainty and readiness for discharge. Further examination is warranted to delineate these influences and to design methods for supporting parents during the transition to home care.