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Abstract
Background Children’s palliative care is changing. Medical and technological advances enable an increasing number of children with life limiting conditions to survive on long term ventilation (LTV) via tracheostomy. A specialist hospital identified that children spend months in hospital awaiting adaptations to accommodation, and establishment of a care package.
Aims
Set up a unit for tracheostomy ventilated children within a Children’s Hospice in partnership with the hospital. This unit would provide accommodation and nursing support for 3 children and families in preparation for discharge home.
Facilitate care of child outside the hospital environment.
Methods October 2016-March 2017:
Literature review
Partnership working with respiratory team
Agreed practice framework
March 2017–October 2017:
Collaboration with specialist paediatric respiratory, and hospice palliative care teams
Workforce planning
Development of clinical pathways, policies and standard operating procedures; clinical governance
Practice Education team develop LTV Study day and Competency Framework, ongoing review of clinical knowledge and skills
Preparation of children and families for transfer from High Dependency Unit to hospice.
Results
November 2017: Admission of first tracheostomy and ventilated child and family from HDU to unit
Child resident for 6 months, successful weaning off day time ventilation
July 2018 : Admission of second tracheostomy ventilated child from HDU to unit
Child resident 4 months, discharged on weaning programme
No complications or significant infections acquired by either child
Saved hospital bed days: 308
Staff competency increased from 47% to 93.5%
Maintained good relationship with families.
Conclusion With robust education and governance, tracheostomy ventilated children can be safely cared for in a hospice environment. Both sets of parents reported the environment had a positive impact on family dynamics and improved children’s physical health and emotional well-being.