The Atlas of Shared Learning

Case study

‘When a child dies’; the development of a collaborative education programme to enhance care and support

Leading change

Nurse leaders within the Clinical Simulation Centre (CSC) at Great Ormond Street Hospital NHS Foundation Trust (GOSH) developed an education programme in collaboration with Bereavement, Chaplaincy, Mortuary and Palliative Care services. This aided staff in developing their skills in caring for a dying child and supporting families through this critical time. The programme aims to improve the quality of care provided to families and ensure signposting to further services to meet their needs.

Where to look

Together for short lives (2012) identified that a central element of good practice is supporting staff through training to develop their knowledge, competence and confidence with frequent opportunities to develop their skills in practice. Training is particularly important in relation to communication with families, end of life care and supporting bereaved families.

During discussions, CSC faculty members explored the idea of trialling a new approach to education around death and dying. They carried out a review to explore this further with the CSC Nurse Leaders analysing data from a variety of sources, including:

  • Interviews with recently bereaved parents and families;
  • Literature search on education to support clinical staff and care around death;
  • Training Needs Analysis of clinical staff caring for children who have died or when death was imminent;
  • Faculty members’ views on the current provision of care.

Their review identified from parental feedback that there was differing approaches and language used by clinical staff which was having a huge impact on their experience and leading to unwarranted variation. This was also reflected in the findings of the training needs analysis of staff with a variation in confidence, practice and skills which, was also likely to impact on the parental experience through the initial stages of the loss of a child. Although positive experiences were captured, the evidence suggested it was more commonly negative.

What to change

The evidence from the literature including (NICE, 2016) and, significantly, the shared experiences of parents and families, identified a variation in many aspects of caring for a dying child and after death. In particular:

  • Language used and a reliance on euphemisms that can be confusing;
  • Poor knowledge regarding the legal processes around certification of death;
  • Complex processes not being well understood and poorly followed, for example Child Death Overview Panel (CDOP);
  • How, as an individual, one can offer the best support and care to family at such a critical time.

A newly designed course was required and creation of one, through collaboration with GOSH Bereavement, Chaplaincy, Mortuary and Palliative Care services, would support staff in understanding the wider scope of care for the family.

How to change

The course created was titled: ‘“When a Child Dies” Death of an Infant: key practical and communication skills’. It aimed to:

  • Support staff within an educational environment to learn the key skills;
  • Have a consistent approach;
  • Address what to say and do when a child dies.

This course has been designed and is led by the Operational Lead for Simulation, the Bereavement Services Manager (both children’s nurses) and a senior member of the Chaplaincy team. Utilising their skills in simulation-based education and bereavement care, they designed the course to directly address deficiencies in the provision of this type of care. Through innovation and passion, this course has grown from a quick 4-hour overview to a full 2-day programme. The changes made to enable this growth were implemented using a ‘Plan Do Study Act’ (PDSA) model of course evaluation.

The goal of the course is to have candidates experience the ‘day of death of an infant’. Day 1 is spent acquiring the skills and knowledge in preparation for actively participating in Day 2 using simulation scenarios following the day of an infant’s death. There is a focus on empowering clinical staff through this experiential model of education to challenge practice, enabling staff to feel more able to have difficult conversations and to provide better care at a critical time.

Adding value

Better outcomes – Success has been measured in terms of candidate evaluation at the end of the course. This has been fruitful in terms of data with 100% reporting feeling better able to care for a child or infant on the day of death. Capturing the impact on clinical practice is still at an early stage. To have definitive evidence of change, an audit is planned to capture this.

Better experience – The improved self-efficacy is an important outcome and the additional knowledge and confidence derived from this course will provide an improved experience for families.

Better use of resources – Having the right education, training and development to enhance skills, knowledge and understanding is particularly important in relation to communication with families, end of life care and supporting bereaved families. Good communication is recognised as a cost-effective use of NHS resources as patient care can suffer because of poor or ineffective communication.

Challenges and lessons learnt for implementation

As with any programme, iterative changes and developments to suit both the learner’s needs and the changing environment have been made as the education programme evolved.

The faculty have gained a greater insight into the knowledge gap of clinical staff in this highly emotive area; as they have sought to understand their educational needs. They learnt it takes time to achieve this and valuable time needs to be well spent.

Take enormous care of the emotional needs of candidates in such a learning environment and use a structured, facilitative debriefing model and significant pauses to give learners the space they require to get the most from the experience. Ensure you use actors, not a volunteer role-playing, as the depth of emotion within an actor can provide creates an invaluable and believable experience.

This programme has been endorsed by the Child Death Review Programme at Healthy London Partnership.

This programme is now part of the Simulation Core Curriculum and is run twice a year. It is also part of the Palliative and End of Life Care education portfolio.

To enable learning from this to be shared more broadly than GOSH, this course is open to any paediatric health care professional who may care for patients at the time of death. This course has been accessed by clinicians from a broad range of clinical backgrounds across London and remains in high demand. Importantly, those in key roles, for example Palliative Care Link Nurses, are attending from various areas and taking the knowledge and skills back to their own areas. Through this model GOSH can support the improved care of children and young people and their families.

Find out more

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