CONCLUSION
FCs of children using LTV willingly take on the intensive medical care
that their child requires to live at home. To quote one of the FC’s
interviewed in the study “it’s a massive undertaking when you sit back
and reflect on what you do…You’re actually a full-blown [health
care] professional yourself, but it is full time care”.
FCs reported that they need to be prepared in all aspects of ‘what life
will be like’ living with a child with LTV care needs at home. They
reported a positive impact of knowledge and skills learned but also
recommended that decisions to implement the LTV pathway should be framed
as hopeful and holistic. FCs favored a teaching approach that was
comprehensive, flexible and family centred. FCs in this study
highlighted the need for enhanced support with respect to the child’s
care coordination and access to skilled and consistent in-home nursing
support. They also shared the need for continued support of hospital
experts beyond the child’s discharge from hospital to ensure continuity
of care, family well-being, and continued opportunities to build on
self-efficacy.