Meet the team
Patient safety researcher
University of Oxford
- England - Oxford
Consultant Paediatric Surgeon
Oxford University Hospitals NHS Foundation Trust
- England - national
- England - Oxford
Consultant in Paediatric Palliative Care
Helen & Douglas House (Oxford University Hospitals)
- England - Oxford
Paediatric Surgical Gastro Nurse
Oxford Universities Hospital NHS Foundation Trust
- England - Oxford
- Helen Higham, Director of Oxford Simulation, Teaching and Research (OxSTaR) centre.
What is the challenge your project is going to address and how does it connect to your chosen theme?
Adults and children with complex medical needs are living longer, and are primarily cared for at home rather than in hospital. They and their family manage the majority of their care, with support from a multitude of different community and hospital teams. Family members do most of their care, including in some cases complex medical tasks, such as feeding tube care and tracheostomy care. In response to this shift towards self and family-provided care, it is vital that healthcare organisations become effective educators, as well as providers of care.
Our team has an in depth understanding of the problems across the pathway for children with medical complexity through analysis of incident reports, surveys with parents, parent Facebook groups and meetings with multidisciplinary groups of professionals. Training and support for parents and other carers is highly variable. Improved training and support will reduce readmissions to hospital and increase parents’ confidence.
What does your project aim to achieve?
Our project aim is to establish how best to train and support parents and other carers across multiple organisations who care for children with medical complexity. Poor quality training leads to avoidable harm, unnecessary hospital admissions and stressed and anxious parents. We will initially focus on the Thames Valley region and seek to develop a template for training which can be used across the country.
Co-producing training for parents and other carers
We previously co-produced booklets about feeding tubes for families used by hospital and community teams across our region. We are seeking funding to develop training further through videos and simulation training. Parents will be involved in co-producing training materials and will be part of our project team. We will evaluate our training through surveys with parents and carers using both quantitative and qualitative data. We will share the materials and methods outside our region, to support teams across the country.
How will the project be delivered?
Bethan Page will manage the project as part of her funded PhD. We will fund a children’s nurse to pilot simulation training with families and develop videos. We will cover expenses for parents who will be a key part of our team, including a couple of parents we have worked with before.
We have an established multidisciplinary team of children’s nurses and paediatricians from the acute, community and palliative sector. Some of us met previously through Oxford Patient Safety Collaborative (part of the AHSN). OXSTAR simulation centre are a key part of our team and will help with the hands-on training. For the videos we will be collaborating with the PIER network and Southampton Children’s hospital.
We will connect with Q members interested in paediatrics, home care and training through the special interest groups, Twitter and Q events. Children with medical complexity are a critical patient group: they see a multitude of different professionals and are high-users of healthcare resources.
What and how is your project going to share learning throughout?
We will think carefully about where to host the videos to reach the widest possible audience. As well as sharing findings with our personal networks of interested professionals and charities, we will share learning through Q, national organisations (e.g. the PIER network) and charities (e.g. Well Child).
We have previously published a paper analysing patient safety incidents for children with feeding tubes cared for at home. Having a researcher as part of the project team will enable us to write-up our work as academic publications. We will also be active on Twitter and parent Facebook groups promoting and sharing our learning.
Our project will be of wider interest to Q members outside paediatrics. Family-led care at home is also commonplace for care of the elderly and those with chronic conditions. We will share our learning on developing training for parents with professionals who are teaching patients and family members to provide any type of care.
How you can contribute
- Ideas from anybody who is involved with teaching/training patients or family members to do medical tasks at home.
- Support with putting us in touch with healthcare professionals who work with children with medical complexity across the country.
- Putting us in touch with any parents who might want to support this project.
- Any ideas for improving our project.
|1 Dec 2019||Stakeholder meeting to discuss plans for videos/simulation|
|5 Jan 2020||Small scale models for simulation training to be ordered|
|1 Mar 2020||Start piloting parent training using simulation and models|
|1 Mar 2020||Video creation to begin after family consultation period|
|1 Jun 2020||Stakeholder meeting to review progress|
|1 Jul 2020||Finalise evaluation plan for videos|
|3 Aug 2020||Videos begin to be shared and evaluated by parents & carers|
|5 Oct 2020||Event to share progress with community and hospital teams|
9 Mar 2020
Bethan Page and Emily Harrop presented at the CoLab conference on the 31st January at Birmingham Children's Hospital. We talked about our plans for the Q funding and showed a preview of the training videos we have started co-producing with families. The CoLab is a new UK-wide network to improve the care of children with medical complexity: https://www.colabpartnership.org.uk/events/1-through-the-complexity-maze
9 Mar 2020
We had a planning meeting on the 22nd January, attended by parents and nurses and paediatrians from the hospital, community and third sector, researchers and our collaborators in Southampton from the PIER network. Plans are underway to second a nurse to work on the project and to collect baseline data with families and other staff and carers looking after children with feeding tubes and long-term ventilation. We have created a few initial videos with one of the parents we are working with and her son and daughter, filmed in their home.
4 May 2020
We had a first "virtual" meeting at the end of April, attended by 18 people from Oxford & Southampton (nurses, consultants, parents, researchers). We primarily discussed the possibilities of online training for families and staff, through videos and interactive troubleshooting sessions with clinicians. There still needs to be some core face-to-face training, but we are unable to pilot this at the moment while social distancing is in place. We are focusing our immediate efforts on collating existing videos, and quality assessing them. We will next meet in July.
1 Jun 2020
What could others learn from your experience of working with a range of stakeholders and collaborating across boundaries (geographical, professional, sector) – including what is working well and any challenges you have faced?
We have a very supportive group of parents, nurses and consultants helping with this project from across Oxford and Southampton. We met in person as a wider group in January and had a "virtual" meeting at the end of April, attended by 18 people (nurses, consultants, parents, researchers). It was great to have so many people on the call, despite clinical commitments due to COVID-19.
One of our ambitions for the project is to begin to standardise training for parents, healthcare professionals and other paid carers who provide care for children with complex medical needs. At the moment, these different groups receive different training and information, despite the fact that they are all doing the same basic procedures and caring for the same children. Our vision with the videos and online resources we create is that they can be used for training anybody, whatever their role, parent or professional. This is difficult to achieve in practice as lots of different organisations are involved, and have different policies in place. In our videos we will have parents, community and hospital-based healthcare professionals featuring to demonstrate our collaborative approach. Most existing videos we have identified are hospital-focused, often relying on plastic mannequins rather than demonstrations on children which are parent representatives tell us is so important. We have some video footage filmed with a mother and her children at home; the home is where most care is provided so we want the home environment to feature a lot in our videos. We have plans in place to do more filming, featuring community and hospital-based staff so all groups are represented.
1 Jun 2020
What have you learned so far, either from the successes you have had or from where things haven’t gone to plan?
In our April meeting we discussed the possibilities of focusing the project more on online training resources for families and staff. COVID-19 has refocused our minds on the opportunities technology provides, such as opportunities to provide individual or group troubleshooting and teaching session using video conferencing. Any training we believe also needs some face-to-face hands on component, which for now we have had to put on hold.
Over the past few weeks we have collated a list of existing videos for gastrostomy and tracheostomy care and are now rating the existing videos, and identifying gaps where we need to create more of our own videos. We created a few short videos prior to lockdown with one of the parents working with us and her children. We are exploring ways to do some filming with staff during lockdown to supplement our existing footage, including short clips filmed over Zoom.
Prior to lockdown we had some 3D printed models for practicing changing a gastrostomy button designed. Social distancing requirements have put on plans for face-to-face simulation training on hold, but we hope we will have to resume them soon, as we know any videos and online resources need to be supplemented with hands-on face-to-face training. COVID-19 has brought both challenges and opportunities to our project.
27 Aug 2020
A recent update from the project
- 107 families have completed our survey on their training and support needs for gastrostomy care.
- Parents' experiences of training were highly variable. Most families received verbal information and demonstrations on how to care for their child's gastrostomy from a healthcare professional. 14% of families had practiced on a doll or with some equipment as part of their training, and 3% had been shown videos.
- 36% of families said they were slightly confident or not at all confident in the first week at home caring for their child after gastrostomy surgery. Only 11% said they were fully confident.
- Families rated videos and simulation training as "very useful" and more useful than written booklets and online training.
- Families rated Community Children's Nurses and other families and facebook groups as the most useful sources of ongoing support with caring for their child's gastrostomy.
- Families were shown an initial video from the project and asked to give us feedback on what they liked about the video and how it could be improved. Families particularly liked that the video was filmed at home and seemed "real", and said the instructions were clear and simple to follow.
- The majority of families wanted videos to feature both parents and healthcare professionals.
- 97% of families wanted at least some of the videos to be filmed at home (rather than in hospital).
- We have created three videos so far on gastrostomy care. The videos have been evaluated by our stakeholder group of healthcare professionals from the community and hospital setting and our parent representatives. Our video editor is now making some small edits to improve them based on the feedback.
- The two childrens nurses who are supporting the project are developing the next few videos (care of the stoma site, venting and an introductory video on what a gastostomy is)
- We will be asking around 100 families from across the country to evaluate the set of videos later in the year, and wider group of healthcare professionals.
Simulation & hands on practice
- Alex (paediatric surgeon) has done surgery on Polar the teddy- he now has a gastrostomy button. Polar will be used for training families so they can have hands on practice before trying procedures on their own child. Polar will also feature in some of the videos.