There is no established tradition of seeking consent in intensive care units (ICU), probably reflecting the specialist life-saving therapies involved and the usual incapacity of the ICU-patient. With critically ill children, someone with capacity to consent is usually present, but rarely does so. The study aimed to investigate staff and parents’ views about consent to assess whether there was a need for a more formal consent system and to identify local good practice to share with other units.Methods
This qualitative project was based at Great Ormond Street Hospital. Semi-structured interviews were completed with nine members of ICU staff and fifteen parents of children recently admitted to ICU. A phenomenological approach was used during analysis with themes emerging until saturation.Results
Themes from staff included inconsistency and protecting parents from the burden of consent. Themes from ICU-parents included maintaining control and feeling empowered. Overall, mutual trust between families and ICU teams underpins satisfaction with the current system and neither group expressed a strong desire to introduce written consent for ICU-care. However, some conflicting views emerged between staff and parents: whilst staff judged consent to be an emotional burden for families, parents found decision-making processes a means of coping, empowerment and maintaining control. Staff were divided about which ICU-interventions it was deemed necessary to obtain written consent for, and for which ideally this should be the case.Conclusions
Parents want to be updated regularly on ICU and share decision-making but do not want to explicitly consent.