Experiencing home care
FCs shared their experiences with respect to helpful and unhelpful
in-home support. Many FCs cited challenging experiences with nursing
support at home including unavailability of nurses and their lack of
experience with children, tracheostomy tubes or emergency situations.
FCs found tremendous benefit in connecting with other families through
on-line support groups where they often learned care tips. Some FCs
flagged opportunities for re-education and training post discharge as
their child’s development and care needs changed (see Appendix 9).