Working together to improve outcomes for family members of critical illness survivors
We started with patient and public involvement and engagement work (PPIE) in partnership with Sepsis Research (FEAT) and found that, unsurprisingly, patients and their families thought it was important to improve care for families during and after critical illness. They also highlighted the importance of including the entire health and social care team, to make sure care delivery was meaningful and useful for the entire family unit. Colin Graham, Chief Operating Officer, Sepsis Research FEAT comments:
At Sepsis Research FEAT we know recovery from sepsis and critical illness does not stop at the patient’s bedside. Families live through the trauma too and often carry a heavy burden afterwards. That’s why PPIE is so important. By listening directly to patients and their families, we can shape research and support that truly meets their needs. This work is crucial to improving outcomes for survivors and for the families who support them.
From this initial engagement work, our next step was understanding what we could do to help families. One of the problems we came up against was that there were so many different ways of measuring the effects that critical illness had on those close to patients.
We decided it was important to find out which measures had been used so far, and once we had this information, we could potentially bring together what was already known about interventions and use it to plan future research in this area.
The team were awarded funding from the National Institute for Health and Care Research (NIHR) Cambridge Biomedical Research Centre in 2024 to undertake the review. Claire Brown, a clinical specialist pelvic health physiotherapist and pre-doctoral research fellow from Cambridge University Hospitals Foundation Trust, was appointed as the research fellow. Claire says:
We wanted the team to be made up of a wide range of people and expertise, so we invited clinicians with experience in Intensive Care Unit (ICU) recovery and bereavement, as well as methodologists skilled in reviewing evidence, to join the team. We also recognised that having an international perspective was important.
Assistant Professor Leanne Boehm from Vanderbilt University (US) joined the review team, providing insights from different healthcare systems and cultural contexts. This international collaboration ensured our findings would have broader global applicability.
Leanne reflects that bringing an international lens to this work was crucial because family experiences during critical illness vary significantly across different healthcare systems and cultures. For example, in the US, there are unique challenges around insurance coverage, care coordination, and family support structures that may differ from the UK and other international contexts. Leanne says:
By collaborating across borders, we could identify patterns and gaps that might be missed when looking at research from just one country or healthcare system. This global perspective helped ensure our findings would be relevant and applicable to researchers and clinicians working with families worldwide, ultimately strengthening patient and family care during and after critical illness.
We also wanted to ensure that the research team included a mix of established and early-career researchers to bring both experience and fresh ideas. We included experts from other fields so our findings could be understood in a broader context. This mix of both multidisciplinary and methodological expertise ensured that our review was methodologically robust but also would have a significant clinical impact.
In the review we identified over 400 studies reporting the effects of critical illness on patients’ family members, using 218 different measures. Only 35 studies looked at the social and financial problems faced by families during and after critical illness. Of the 218 measures, over half of these focused on emotional and mental health. Our review highlighted a need for a common outcome set to measure what happens to family members after critical illness. The full scoping review was published in August 2025.
As a result of this scoping review a set of core outcome measures is being developed by researchers in THIS Institute. The core outcome set development – an agreed-upon minimum set of outcomes that researchers and clinicians should report in all studies related to a specific area – will be undertaken in partnership with Sepsis Research, Queen’s University Belfast, and the University of Edinburgh. Professor Joanne McPeake underlined the importance of this review and the next stage of this work:
This scoping review has highlighted the diversity of measures which have been used in research to date, which limits our ability to really understand what interventions work for this important group. We are excited to start the next phase of development, which will expand PPIE activities across the UK.