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Scalable digital learning, integrating families as partners in neonatal care

A digital approach enabling anyone, anywhere to champion lived and learned experiences in #FamilyIntegratedCare, spark culture change, and embed the BAPM Framework for Practice using the tried-and-tested ‘Whose Shoes’ approach

Read comments 14
  • Winning idea
  • 2022

Meet the team

Also:

  • Rachel Collum and Nadia Leake, parents with lived experience and who are researchers.
  • Dr Nicola Crowley.
  • Julia Cooper, Care Coordinator, Neonatal Operational Delivery Network.
  • Alex Mancini-Smith, National Lead Nurse for Neonatal Palliative Care.
  • Anna Geyer, visual practitioner.
  • Matt Stocker and Debbie Stocker, innovation and technical specialists.

What is the challenge your project is going to address and how does it connect to the theme?

Parents often feel helpless and like they don’t belong on a neonatal unit; they feel like their baby becomes a ‘hospital baby’ and they become ‘theoretical parents’. Bliss (2019) found 52% of neonatal staff experienced compassion fatigue; 24% experienced flashbacks; and 48% had considered leaving due to the impact on their mental health and wellbeing.

Whose Shoes is an award-winning co-production approach that brings humanity back into view. It underpins #MatExp, a powerful grassroots campaign that shares best practice across maternity and neonatal services. The approach was a key factor in the successful business case to build a Surgical NICU addressing the shared concern between Liverpool Women’s and Alder Hey Children’s Hospitals that babies who needed specialist surgery had to be transferred between the two.

We want to create a digital experience that enables learning from best practice, hearing all perspectives, and that embeds FICare culture in all contexts (hospital, home, remote, hybrid).

What does your project aim to achieve?

We aim to champion lived and learned experiences in Family Integrated Care and empower individuals, teams and neonatal networks to embed the five key FICare principles as laid out in the BAPM Framework for Practice:

  • Partnership with families
  • Empowerment of families
  • Wellbeing of both families and staff
  • Collaborative and enabling culture
  • Family-friendly environments

We will develop and deliver:

  • A neonatal mobile web app that brings voices alive and can be used by anybody, anywhere
  • 36 neonatal Whose Shoes?® mini experiences, comprising scenarios, poems, audio stories, creative exercises and…actions!
  • Accompanying facilitation exercises that enable bitesize learning experiences over coffee or on-the-job team meetings

By including marginalised voices and lived experiences of health inequalities, we aim to challenge deeply held beliefs and create greater insights about the barriers and prejudices some families face.

The project will take an agile, collaborative approach that identifies and addresses barriers to adoption, and widely shares best practice.

How will the project be delivered?

This is a highly collaborative project. Our team has a shared passion for FICare with a mix of healthcare professionals, educators, experts by experience, researchers, creatives and technical specialists! Together, we have considerable experience in neonatal care, improvement, digital innovation and leading national initiatives.

We plan to:

  • Co-produce mini experiences: engaging with the Q Community and relevant stakeholders to create scenarios, poems and stories that share diverse perspectives.
  • Use an agile approach: identifying requirements; developing the underlying concepts; delivering early prototypes; and developing iteratively with users to mitigate risk and encourage adoption.
  • Engage our networks in rollout: implementing first with the East of England Neonatal Operational Delivery Network and other connections keen to be involved from the outset.
  • Establish a FICare Community of Practice: sharing learnings and best practice around quality improvement in neonatal care.
  • Evaluate impact: gathering insights, learnings, success stories, case studies, measures of uptake, and in-app feedback.

How is your project going to share learning?

This will be an open access, free to join neonatal mobile web app. Wide use will be encouraged through the Q Community and our very diverse networking group of collaborators on this project, with the potential for it to be used by all neonatal units, Neonatal Voices Partnerships, and anyone connected to FICare.

We have a strong track record in grassroots change that draws people in and makes an impact by tapping into our shared humanity, and through our strong social media presence. We will build on the powerful and well-established #MatExp campaign, of which project team member Gill Phillips is co-founder, and by harnessing the already established #FICare and #NICU hashtags.

The FICare Community of Practice, which we will set up within the Q Community, will be central to sharing learning.

We will feature learnings in the Wild Card podcast and create a Steller Story to share the journey.

How you can contribute

  • Whose Shoes® is always a highly collaborative process. We would LOVE to have your help please!
  • Join our Community of Practice to discuss Family Integrated Care and swap ideas and experiences.
  • Help us crowdsource different perspectives.
  • Neonatal community can contribute to the scenarios, poems, stories, moments.
  • Wider Q Community can volunteer their live voices – e.g. read a scenario or poem.
  • Suggest / design creative exercises – the Liberating Structures community will love this!
  • Pilot and test the new resources and give feedback.
  • Share prior experience of digital projects, including pitfalls to avoid.
  • Link with other teams using the tools.
  • Suggest supporting resources.
  • Share the ‘Wild Card podcast’ widely – specifically episodes around neonatal care and Family Integrated Care: https://www.buzzsprout.com/1838805/9873558-18-family-integrated-care-what-do-parents-say
  • Support us in scaling adoption across the country by tweeting, sharing and telling colleagues.
  • Use the Community of Practice to discuss progress in embedding FICare.
  • Share ‘lightbulb moments’ and write up as case studies!

Plan timeline

14 Jun 2022 Engagement with Q Community throughout project, and beyond
14 Jun 2022 Social media engagement throughout project, and beyond
23 Jun 2022 PROJECT STARTS - Development team project kickoff session
27 Jun 2022 Start gathering ideas for 36 'mini experiences' from neonatal community
1 Jul 2022 Commence design/wireframing of mobile web app and initial brand work
15 Jul 2022 Early stage testing of prototype web app outline and concept
8 Aug 2022 Development of MVP mobile web app ready for 'mini experiences'
1 Sep 2022 Bi-monthly team progress review
1 Sep 2022 Choose 6 'mini experiences' for pilot test and record audios
1 Sep 2022 Start to establish FICare Community of Practice
8 Sep 2022 Develop supporting resources, and research links to best practice
15 Sep 2022 Add 'mini experiences' content and audio into MVP app
20 Sep 2022 Plan and organise evaluation of toolkit with pilot users
3 Oct 2022 Commence testing of mobile web app with pilot 'mini experiences'
24 Oct 2022 Review feedback from users of pilot test (East of England)
1 Nov 2022 Bi-monthly team progress review
15 Nov 2022 Integrate suggested changes and improvements from community for final product
5 Jan 2023 Bi-monthly team progress review
5 Jan 2023 Develop remaining 'mini experiences' with experience gained from pilot
5 Jan 2023 Start to record remaining audios and finalise resources
6 Mar 2023 Bi-monthly team progress review
7 Apr 2023 Plan launch for maximum impact and pre-engage supportive stakeholders
7 Apr 2023 Test mobile web app and full content for selected users
1 May 2023 Team pre-launch readiness review
9 May 2023 Launch mobile web app with wide promotion across neonatal networks
22 Jun 2023 Team retrospective and lessons learnt
29 Sep 2023 Creation of Steller Story to share the journey
31 Jan 2024 Gather success stories, case studies, uptake measures and feedback

Comments

  1. An interesting project using widespread easily available technology for parents to have a voice and for teams to learn from sharing. While it cannot be a complete replacement for face to face contact by skilled healthcare staff this would help in many areas where gaps are present currently (and foreseeable future). Some parents become "expert parents" quickly and their contribution can be considerable.

  2. Love this right from the start approach and am a big fan of Whose Shoes!
    It would be awesome to extend it (in future and with more funding!) to early childhood and onwards (I’d love to collab for this!)?

  3. I think you project has great potential to engage parents in the care of their baby, building confidence and competence and the skills to safely and confidently bring their baby home

     

  4. Guest

    Nadia Leake 1 month, 1 week ago

    I’m a parent of twin boys born extremely prematurely. We spent about 10 weeks in a neonatal unit which supported us to nurture our boys through an ethos of family integrated care. We then spent another 10 weeks at a neonatal unit which hadn’t begun to implement family integrated care at this time.

    I cannot stress enough, as a parent with lived experience of neonatology  with and without family integrated care; FICare makes the worst possible time of a parents life bearable. It hugely reduces parental stress and supports the vital bonding and loving care that a sick or medically vulnerable newborn baby needs. The resource we’re planning  will make a difference to families when they are admitted to a neonatal unit, when they are discharged, and give these babies the best possible chance to thrive, not just survive.

  5. Our #NobodysPatient 'wrap up' event was 5 years ago today. Amazing meet-up and ideas exchange of passionate people from across the country, trying to prevent women and families falling through the gaps between maternity and neonatal care. https://youtu.be/8-UjoCdVEIE
    #MatExp
    Coincides with the launch today of this Q Community
    #FICare bid - SERENDIPITY!

  6. Supporting the whole person and the whole family is so important.  Are existing neonatal facilities suitable for ensuring FICare?

    I am also interested in hearing more about how this idea supports staff experiencing moral distress and compassion fatigue?

    I would be pleased to introduce you to the BeHumanKind Experience that would support staff resilience and their ability to support parents.

     

    1. Agree with Gill's comments interesting questions. In answer to your 1st question 'are existing neonatal facilities suitable for ensuring FICare?' The answer would be no not everywhere. This is something that was highlighted in in the 2019 Neonatal Critical Care Review and funding for investment in Care Co-ordinators to facilitate the development of Family Integrated Care was made. The care co-ordinators are now in place and working hard now to scope, support and embed FICare across their regions. The EoE Lead Care Co-ordinator is part of this Exchange group.

       

       

       

    2. Some great questions here, Kevin. We look forward to connecting with you and learning more. Do you know Alex Mancini-Smith, one of our team members? Alex runs wonderful webinars to support neonatal staff - issues such as exploring psychological safety, resilience, moral distress, and compassion fatigue are central to her work.

      Our proposal is essentially about giving the staff in every neonatal unit a voice  and enabling these vital conversations in which they're able to share their experiences and concerns, then leading to creative, compassionate solutions.

      With regard to the neonatal environment, already people are responding to Nadia and Rachel's podcast episode, exchanging improvement ideas and best practice. As a consultant obstetrician who immediately had a 'lightbulb moment', perhaps Florence Wilcock can comment further on this?

      Nadia and Rachel are also passionate members of our team (mums who have had lived experience of neonatal care) and give a taster here of the vibrant voices we will crowdsource for this project.

  7. Guest

    Jacqui Adams 3 months, 1 week ago

    Family Integrated Care is so important to the support and care of parents and babies on neonatal units. This project would be a great way to learn and share good practice across the country in a truly grassroots coproductive way

    1. Thanks for your comment Jacqui. The work that you and your colleagues do at Tiny Lives Trust is wonderful. Such an amazing, passionate community in this world of Family Integrated Care! And yes, grassroots coproduction all the way!

      #StrongerTogether #NoHierarchyJustPeople

  8. Guest

    Emma Cushnan 3 months, 1 week ago

    As a mother of a premature baby and who now cares for parents with birth trauma it is so important that family integrated care is the standard across all units. It supports both perinatal and infant mental health and also shows trauma informed awareness of the difficult journey of Neonatal.

    1. Thanks Emma, and we would love to have your support with this project please. SO important to hear from the parents, and your voice has been incredibly influential, helping bring recognition of the need for Family Integrated Care and how it reduces birth trauma.
      I was honoured to speak to parent-leaders Nadia Leake and Rachel Collum about this. Great to see that their voices have already reached over 200 people in 11 countries. #FICare is a truly global initiative: Family Integrated Care - what do parents say? (buzzsprout.com)

  9. Guest

    Florence Wilcock 3 months, 1 week ago

    This would be an incredible project very timely with the new FICare  guidance a practical way to help neonatal teams accelerate implementation with local parents .

    1. Thanks Florence. So much learning from the NHSE Challenge Fund #MatExp 'Nobody's Patient' project in terms of the benefits of integrating care and preventing women and families 'falling through gaps' between services. #FICare is SO important - staff and families experiencing the benefits of working together and supporting parents to grow in skills and confidence to care for their new baby, with a safe and happy 'transition' to home. A well as the BAPM framework (2021), we are looking forward to seeing all the learning from the imminent Ockenden report and integrating key lessons into our tool.

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