Skip to content

Q logo

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, intravenous antibiotics 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 various forms of evidence, including analysis of patient safety incident reports, surveys with parents, parent Facebook groups and meetings with multidisciplinary groups of professionals. Training for parents and other carers is highly variable and needs to be improved.

What does your project aim to achieve?

Our project aim is to establish how best to train parents and other carers across multiple organisations who care for children with medical complexity. Poor quality training can lead to avoidable harm and unnecessary hospital admissions. 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 written training materials about feeding tubes for families used by hospital and community teams across our region. We are seeking funding to develop training further, e.g. 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 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 day-to-day. We will use some of our funding to support time and expenses for parents who will be a key part of our team. We will also employ administrative support to help with the organisation of events.

Key stakeholders will include specialist paediatric nurses, Children’s Community Nurses, schools, and dietitians from the acute, community and palliative sector. We previously met as a group of interested professionals through the Oxford Patient Safety Collaborative so we already have an established multidisciplinary team who will support this work.

We will connect with Q members to create a network of interested professionals from across the country. We will set up a new special interest group on Q about training patients and family members, and contribute to existing relevant groups. 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?

As well as sharing findings with our personal networks of interested professionals and charities, we will share learning through conferences, and through national organisations and charities such as Well Child and Together for Short Lives. We have previously published a paper analysing patient safety incidents for children with feeding tubes cared for at home detailing the landscape of safety problems across the pathway. 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.

Comments

  1. This is a great proposal from a really strong team in a much needed area. The proposal could be strengthened by indicating the type of support from the PSC and in particular, any potential QI developments that may be generated by the work. Also, I can see a strong interest in training for parents and carers on the technical aspects of technologies at home. It would be good to know how the training will cover the psychological needs of people who have navigate complex systems, and who are often alone in the level of sophistication needed to care for their loved one day in, day out.

    1. Thanks Jill for your comments. I agree that the psychological needs of these parents do need support too and the peer support between parents can be very powerful too. We will certainly look into the non-technical aspects as part of the quality improvement in the project.

    2. Thanks for your thoughtful comments Jill. We were discussing in a meeting last week the need to include psychological support as well as technical support in any resources we develop. One of the parents we are working with suggested a Radio 4 style Listening Project, with parents talking about their experiences and what they wish they had known early. I have a collection of pieces of advice from parents for new parents through surveys and interviews. Another parent suggested putting parents in contact with other parents, and FAQs, like where can I get clothes for my child (M&S do a good range for kids with feeding tubes). We will continue to link with the Patient Safety Collaborative and will discuss with them how best to work together in the coming weeks, and draw on their QI expertise. Thanks for your support Jill.

  2. As others above I echo the importance of this project.

    We are currently doing some very similar (non funded!!) work in this very area regionally in Wessex through our PIER network (www.piernetwork.org) for which I am the improvement lead. As part of the same ODN's and links with our tertiary hospitals of Oxford and Southampton I would be very keen we collaborate if possible.  Particularly as a PIER lead for Thames Valley has just been appointed.

    Bethan please do get in touch - Kate.pryde@uhs.nhs.uk

    1. Thanks Kate for your support. I am aware of the PIER network as some of colleagues were part of it previously. It would be wonderful to collaborate with another network to extend the work.

    2. Thanks for getting in touch Kate. I'll send you an email today.

  3. Guest

    Karen Horridge 2 weeks, 5 days ago

    An excellent proposal. As a disability paediatrician, immediate past chair of the British Academy of Childhood Disability and chair of the Informatics for Quality committee of the Royal College of Paediatrics and Child Health, I appreciate the increasing technology dependencies of many children and young people with complex disabling conditions. Co-production with families will ensure training resources are relevant and accessible. Thought will need to be given to where the training will be delivered, to ensure access for as many families as possible.

    1. Thank Karen for your comments. The expansion of the medical device industry will no doubt continues and the complexity of the technologies involved will increase. We are mindful of the need to be equitable in providing the support and training as well as the need for older children especially as they transit to the adult world where is there is often a void in support.

    2. Thank you for your support Karen. We were discussing where training could be held in a meeting last week. There's various options including home, online through mobiles, hospital, Community Children's nursing visits. We will continue discussing with parents and come up with flexible solutions that work for families.

  4. Great project and strong team with relevant skills and expertise to deliver the work successfully. Putting co-production at the core of training materials development will ensure outputs are directly useful for those most at need. Looking forward to hearing more about this effort!

    1. Thanks Chrysanthi. We are pleased to have a multidisciplinary team of healthcare professionals as well as close collaboration with experts in psychology, human factors, education, 3D printing etc. The network established at our previous PSC work has certainly been very useful.

  5. Guest

    Hilary Cass 2 weeks, 6 days ago

    This is a tremendously important project and could not be more timely. As Chair of Together for Short Lives (national children's palliative care charity) and British Academy of Childhood Disability, I consider the issue of how we support parents to care for the rising numbers of medically complex children at home to be one of the most pressing issues in paediatrics. This is a really clear and practical proposal from a great team, so I do hope it will be supported.

    1. Thanks Hilary for your comments.

      We hope the project will also help everyone not only to concentrate on the care of the child but the health of the child. And to make the tasks less "medical" but simply to support basic human functions of feeding, breathing, etc.

    2. Thank you for your support Hilary.

  6. A great project - with potential for the learning to be transferable to many settings where complex care is carried out in the home - an increasing issue

    1. Thanks Katherine. There are indeed many generic elements that can be applied to other populations. Hospital at home will certainly be an important part of future healthcare for many patients that have been traditionally been cared for in the acute hospital setting.

    2. Thank you for your support Katherine. Yes I think there are very important implication for how we train patients and family members in the adult population too.

      There's some interesting comments in this IHI report on families provide complex care at home: http://www.ihi.org/resources/Pages/Publications/No-Place-Like-Home-Advancing-Safety-of-Care-in-the-Home.aspx The problems our project will address are certainly not unique to paediatrics.

  7. Guest

    Abi Warren 2 weeks, 6 days ago

    This is a much-needed training in order to empower parents and carers to look after their children who are medically complex and often dependent on technology with confidence. Simulation-style courses will give parents and carers an opportunity to practice and carry out tasks in a controlled environment with full support of highly skilled professionals to ensure they are fully competent to care for their children away from a clinical environment. Training parents and carers well will reduce hospital admissions and enhance the quality of life for children and their families by enabling them to live at home with their families safely.

    1. Thanks Abi for summarising the key elements of our work in your comment. As the parents will be from different social backgrounds and varied abilities, we are mindful of the need of using different approaches in helping them to build up their confidence and to offer/direct appropriate support as required.

    2. Thank you for your support Abi. Feeling confident is so important for parents. The sense of responsibility can be enormous.

  8. Guest

    Adrian Clark 3 weeks, 1 day ago

    The reference to simulation training sounds like an innovative and potentially exciting approach to the subject of parent education. As we know from the aviation and other industries, the use of simulators is an excellent way to build up ‘muscle memory’ for practising unfamiliar techniques. If this study finds evidence that simulators help speed up or embed more deeply the techniques that parents need to become skilful at when caring for their children, then this would be a really valuable finding worth sharing.

    1. Thanks Adrian for your comments. We have established expertise locally with clinical simulation work and will involve local experts in the design of appropriate simulation material/models to maximise the learning (and to allow practice) by the parents.

    2. Thank you for your support Adrian. We can certainly learn a lot from other industries that use simulation extensively as part of their training. Whilst simulation is used to train hospital-based healthcare professionals, it is hardly ever used to train patients and family members. Given the complexity of care some parents are now providing, it seems that simulation could play an important role in their training.

  9. Guest

    Emily Harrop 3 weeks, 1 day ago

    This project follows up on known gaps identified by the research team while undertaking previous work supporting complex paediatric patients with technology dependence. The project has strong PPI support and would evolve by co-design with tow parents of children with complex medical needs.

    1. Our team with strong PPI support and parents involvement is central to the project. Unfortunately, as healthcare providers we are often clinician-centric and or hospital-centric. We hope to move towards patient/carer-centric care with support from clinicians and other providers.

  10. Guest

    Andrea Lambert 3 weeks, 1 day ago

    This project is so important. By creating resources that can be shared, then any nurse who delivers care and support  to this group of children will feel empowered to deliver training to parents and of course to young people who wish to be as independent as is possible. Currently training  parents is often viewed as the role of the Nurse Specialist or CCN .

    1. thanks Andrea for your comments. We hope the training can be between and across boundaries geographically as well as professionally. In addition, parents can teach and share with each other with support. For older children who are able to can then be ambassadors to support others.

    2. One of the other issues previous work has identified is that the CCNs, Special School nurses etc. who are responsible for delivering this vital training to families often have little or no training themselves in how to be trainers - they are trained to deliver care, not train others. Supporting them in this changing role is so important.

      The recent WellChild publication addresses some of these issues
      https://www.wellchild.org.uk/wp-content/uploads/2018/12/11-principles-for-better-training-v6.pdf

       

    3. Thank you for your support Andrea. Creating and testing resources which can be used by lots of different services (community children's nurses, hospital teams, respite services, schools etc.) could be of real value. It's important to have consistency in training, so parents and carers get the same messages from across different services. Let's keep in touch.

  11. This project has great potential to increase return on investment once the research team shares the findings.  This type of training can be extended to provide family lead care for any complex condition. This is an excellent idea!

    1. Thank Milfred for your comments. I think we are only scratching the surface at the tip of an iceberg. The potential cost savings can be significant, as currently not only there are additional community nursing and hospital admission episodes which can potentially be avoided, the amount of waste of medical materials (eg additional gastrostomy buttons used and other "plastics" for feeding) is probably considerable.

    2. Thank you for your support Mildred. There are certainly potential economic benefits of better training and support, like reducing avoidable visits and admissions to hospital and call outs to community teams. We will evaluate family-centred benefits too, such as parents feeling more confident. We will share the training resources and methods we develop with teams around the country.

  12. This sounds like a really important project. I was wondering if there are any training initiatives going on with other teams around the country that you could learn from or is the development of these training materials something completely new?

    1. Thanks Fran. From my experience and speaking to paediatric surgical colleagues around the country, training of parents are usually quite limited and very much dependent on the community nurse contact with the family which can be variable in terms of experience. The issues encountered by the parents (and their response) are also varied as evident in our recent study based on NRLS data as well as comments made in the social media of a UK children tube feeding support group.

    2. Hi Fran,

      Good question. We know of some examples of good training for parents from the charity Well Child, and a team in Coventry who have a great training programme for healthcare professionals and paid carers working with children with medical complexity. Anna Burhouse suggested finding out more about a shared care project for haemodialysis which looks very helpful for us.

      Does anybody else know of relevant projects training patients and family members that we can learn from?

  13. Working to establish how best to train parents and other carers across multiple organisations who care for children with medical complexity is an extremely important piece of work which deserves to be recognised and supported. The most recent NHS strategy documents Five Year Forward View and LTP have all focused on the importance of self care and patient/public/carer involvement and this is a perfect example of encouraging co-production. .

    1. Thanks Douglas for your comments. I view the parents as part of the partnership in the care of the child.  The exchange of knowledge and experience between healthcare professionals and parents can help the parents who are experts of their child as well as the experts of the medical condition/technologies. We believe our work fit in line with the Long Term Plan in integrating care which the health service desperately needs.

    2. Thank you Douglas. Family-led care at home is certainly becoming a really important part of our health system. You and others might find this video of interest from the charity Well Child: https://youtu.be/UalbxwqmIPY?list=PL5sEx8_bGHmkuYr0UvLE5xX6XAC8GwjU5 It's a mother talking about caring for her child and all the different complex medical tasks they do.

  14. Dear team,

    What a wonderful idea! I can really see how this work has the potential to transform families’ lives. I wondered if you have you heard about the Health Foundation Scaling Up project SharedHD? Information about the team is available on their website https://www.shareddialysis-care.org.uk/sharehd and the team have a great presence on Twitter @sharemydialysis The team have learnt so much about shared care, co-production and training that I think might be relevant for you. They are a lovely brilliant team and are so very generous about sharing their experience and knowledge.

    Good luck with your bid.

    Best wishes

    Anna

    1. Thanks Anna for your comments. The empowered self-dialysis movement originated in the city of Jonkoping by Christian Farman which has now spread around the global has certainly showed us self-care if well supported can lead to better outcomes. We hope this can extends to care of children by parents even with complex technologies at home.

    2. Thank you Anna. The Health Foundation Scaling Up project SharedHD looks very relevant and interesting. We will get in touch to find out more.

  15. This is such an important project - it empowers healthcare staff to enable parents to deliver safer care to their children. The challenges faced by families looking after children with complex needs at home are enormous and only set to increase; by upskilling them this project will help reduce their demands on NHS services while improving the safety of the care they are able to provide. It will also upskill the NHS staff whose role in delivering training to families is vital but often under resourced.

    1. Yes Geri, if the parents are enabled to deliver safe care with confidence at home, and local healthcare staff can deal with issues that do not need hospital care, then there will be fewer A&E visits and additional hospital admissions especially to the over-stretched tertiary children hospital centres.

  16. Guest

    Katie Lean 3 weeks, 6 days ago

    This project is absolutely critical in today's healthcare culture.  As a close friend to  someone who cares for their child with muscular dystrophy - the place they want to all be is home but require the training and support to do so.  The simulation and training videos are both a visual and supportive way to train and engage parents enabling them to learn and express their concerns in a safe environment.

    1. I agree Katie. Hospital at Home will become increasingly important as part of integrated care and collaboration between health professionals in the community with hospital teams are important. Equally important for the parents/carers to feel confident as well as empowered to look after their child at home.

  17. Great idea to build on some of the work started in Oxford PSC - link attached for further information.

    https://www.patientsafetyoxford.org/clinical-safety-programmes/previous-programmes/paediatric-gastrostomy/

    1. Thanks Jo, we are using the experience and contacts we developed at the PSC to expand the work including this one to empower the parents and cares looking after these children with medical complexity.

Leave a comment

If you have a Q account please log in before posting your comment.

Read our comments policy before posting your comment.

* required fields

This will not be publicly visible

Please note that you won't be able to edit or delete comments once posted.