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. University Hospital Southampton identified that children spend months in hospital awaiting home adaptations and establishment of a care package. This can have a significant impact on family life.
To set up a unit for tracheostomy ventilated children within a children’s hospice in partnership with the hospital, providing accommodation and nursing support for three children and families preparing for discharge home;
Facilitate care of the child outside the hospital environment.
Methods October 2016 to March 2017:
Partnership working with respiratory team;
Agreed practice framework.
March 2017 to October 2017:
Collaboration with specialist paediatric respiratory, and hospice palliative care teams;
Development of clinical pathways, governance, policies;
Practice Education team develop LTV Study day, Competency Framework, ongoing review of clinical practice;
Preparation of children and families for transfer from High Dependency Unit to hospice.
Results November 2017:
Admission of first tracheostomy ventilated child and family from HDU to unit;
Resident for six months, successful weaning off day time ventilation.
Admission of second child from HDU to unit;
Resident four 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. Parents reported the environment had a positive impact on family dynamics and improved childrens’ physical and emotional well being.
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