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.