P-10 How do the prognostic perceptions of parents, and its concordance with those of HCPs, influence decisions about goals of care in children with life-limiting illnesses?

Background

The prevalence of children with life-limiting conditions is set to increase, resulting in an increased number of parents being involved in their child’s treatment decisions. These decisions are influenced by the medical information conveyed and their own evaluations of this knowledge. The aim of this review was to explore the alignment between parental and Healthcare professional (HCP) prognostic perceptions and treatment preferences, whilst presenting possible explanations for any differing opinions.

Methods

A literature search, using the databases: Medline, Trip, PubMed, PsychINFO and EMBASE was conducted. The inclusion criterion applied was – published since 2000, written in English, focused on children of 0–18 years. Peer reviewed data on the prognostic perceptions of parents and HCPs, and their goals of treatment for children with life limiting condition were selected.

Results

Overall, in the eleven papers included there was a lack of parental prognostic understanding with a poor alignment to the prognostic views of HCPs. Parents promoted more aggressive treatment options relative to HCPs more palliative approach. This is hypothesised to result from particularly fathers remaining hopeful for a cure. Studies showed discrepancies remained after prognostic conversations were held between parent’s and HCPs, with others indicating parents’ insight of there being no cure resulted before being openly disclosed by a HCP.

Conclusions

This study postulates poor prognostic insight may arise from a lack of open communication, resulting in parents advocating for more aggressive treatment with hope of finding a cure. However, given the cross-sectional nature of the studies, this review is only able to suggest these correlations. Future studies are recommended to explore the trajectory of parental prognostic understanding and how it is influenced by communication with HCPs.