End of Life Care for Infants, Children and Young People (ENHANCE)
A mixed methods evaluation of current practice in the UK
Workstream 3b: Prospective evaluation of care at the end of life in babies and children in NICU and PICU
What is ENHANCE?
Around 4500 babies and children die each year across the UK. There is evidence that provision of end-of-life care varies across the country but it is not clear how such variation impacts on children and their families. There are growing numbers of specialist palliative care services and children’s hospices in the UK, but little evidence to inform how they should be develop and what their role should be in supporting babies, children and young people at the end of life. We also know little about the costs of care and how best to deploy limited healthcare resources in order optimally to improve care for these children and their families. The ENHANCE study is aiming to identify and investigate different models of providing end-of-life care for infants, children and young people, in terms of outcomes and experiences for children and parents, resource use and costs to families and the NHS.
What is workstream 3b?
In this study, we will describe the care and choices offered to families around the end of life period for their baby or child and see if any of them is/are associated with different child or parental outcomes.
How will we do this?
We will ask the clinical teams in neonatal units and children’s intensive care units to collect more information on the choices that parents are offered if their baby or child is at risk of dying. This will include if a care plan was made, if a specialist palliative care team is involved, and if parents were offered a choice of place of care. If the baby or child dies then a member of the clinical team or bereavement team will give the parent(s) information about this study. If the parent(s) are interested in finding out more about the study then they can ask the clinical team to pass their contact details to the research team, or they can contact the research team themselves. If, after finding out more about the study, they wish to continue then they will be sent a paper or electronic questionnaire to complete with the help of the research team if they would like this.
What will we do with the findings from this study?
We will share the findings of this study with policy makers, clinicians, organisations that support parents and service providers. They will use all this information to inform future delivery of end-of-life care for babies and children.
Frequently asked questions….
Are there options for parents who do not speak English?
Yes, there are: we can translate the Participant Information Sheet upon request. We cannot, however, translate the questionnaires. If parents need help to complete them, we can support them to complete this over the phone.
What is my target?
This will vary according to the size of the unit and the number of deaths in an average year.
What if I do not collect the additional data, but still have an eligible parent?
Unfortunately, we need both the additional data and the parent data to be collected for this study.
What if more than one parent wants to fill in the questionnaire?
This is fine – you are welcome to provide both parents with the questionnaire.
What ID system do I use for participants?
The ID number will be based on the site ID and a unique identifier for each participant – this will be generated by the PICANet system when entering the child’s data.
Do I need to ask for consent when collecting additional data about parents?
No, you do not need to do this because it has been approved by the HRA and is routine data that would be collected.
Who is eligible? What do we mean by ‘parent’?
‘Parent’ means parent or legal guardian.
What are the timelines for approaching parents?
The overall study data collection timeline is a total of 18 months.
We understand that your individual unit may work differently, so the timeframe in which you contact parents may differ. There are three ways in which you can provide parents with study information:
- By clinical team at first debrief
- By bereavement team
- Study information leaflet provided in bereavement pack
How do I apply the inclusion data?
The baby / child only needs to meet one of the inclusion criteria points.
What do I then do with the additional parent data?
This differs depending on the unit type e.g., PICU or NICU. See below:
PICU: The study team will be in touch via email every couple of months (we will ask you what works best) to receive the additional data as a custom download.
NICU: The study team will liaise directly with Clevermed to receive the additional data.
Are parents able to get help from the research team when completing the questionnaire?
Yes, participants are welcome to contact members of the study team. Contact details are provided in the Participant Information Sheet and other study documents.
What documents do I need to provide parents with?
An invitation letter.
A brief information sheet.
A ‘consent to contact form’.
We will provide all of these, along with envelopes for sending out, and pre-paid envelopes for parents to return forms to us.
Is this a portfolio study?
What funding do we receive as a site?
Sites will receive costs (Service Support Costs and Research Costs) as identified in the SoECAT – (we can provide copies upon request).
Would we be a full research site?
What are the study team contact details?
You can contact any team member using the information below:
- Prof. Lorna Fraser, Chief investigator: email@example.com
- Dr. Julia Hackett, Study manager: firstname.lastname@example.org
- Emma McLorie, researcher leading on site set-up and provision: email@example.com
- Andrew Haynes, project support officer: firstname.lastname@example.org