Interestingly, understanding of brain is a key component of relatives' experience: on top of possibly impacting on the decision itself, it significantly impacts on relatives' grieving process 9 months after the patient's death.
To describe the relatives' experiences of information and support while heart or lung transplant candidates were waiting for a transplantation.
Relatives' experiences of ICU care can therefore be important in assessing quality of care.
Knowledge about relatives' experiences of care and treatment given to the patient can be used to improve the quality of ICU care [2], [3].
CCs were also asked to recount their perceived role with SU and relatives, experiences of delivering RP and any issues around involving relatives in RP.
Again, this contrast between roles could be usefully explored by further primary research, such as a qualitative study comparing relatives' experiences of volunteers in different settings.
Finally, the quantification of contacts and its implications to relatives' experiences of involvement would be more suitable to a quantitative study that was designed to explore that, which was not the focus of this qualitative investigation of people's experiences.
The study had two objectives: to understand patients' and relatives' experiences of healthcare incidents and incident disclosures since 2008, and to enrich open disclosure policy with patients' views of the principles of effective open disclosure.
This study is part of a larger project on patients' and relatives' experiences of ICU [ 28] and is not intended as a formal evaluation of ICU follow-up services.
