Making an informed decision
The way in which health care providers (HCPs) share and discuss a
child’s diagnosis and decision for LTV is a critical touchpoint in
building FC trust in the LTV discharge plan. FCs expressed that this was
a time of both emotional and informational overload for them. They
identified that characteristics of information they perceived as helpful
were hopeful, family centred and consistent. FCs explained that it was
difficult to hear acute care HCPs share information about their child’s
prognosis that they experienced as fatalistic. They expressed a desire
for their child’s prognosis to be viewed from a holistic perspective.
Access and interactions with LTV and clinical disease experts instilled
parental confidence and reassured FCs that they made the correct
decision to pursue LTV for their child. Factors that inhibited this
process were a perceived lack of communication amongst various clinical
teams, informational gaps, and misinformation. They also expressed the
need to connect with families in similar situations, for enhanced
emotional support (see Appendix 4).