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).