What methods have been used to find out how family members of seriously ill patients are affected?

Why it matters

In recent decades, a greater provision of intensive care services has led to more people surviving critical illness, and we’re beginning to better understand some of the long-term challenges that affect them. There is greater awareness of the physical, social, emotional, and cognitive effects, along with mental health challenges such as anxiety, depression, and symptoms of Post-Traumatic Stress (PTSD) which are encountered by patients.

Some of the challenges people experience – for example, mobility problems, chronic pain and memory loss – can have a significant ongoing impact on the wellbeing of patients – as well as affecting their family, friends, and social networks.

Family members of critically ill patients can also experience varied short and long-term problems, including PTSD and employment issues. Organisations like The Society of Critical Care Medicine have said that there needs to be more research into the challenges which families face, as this vulnerable group often faces a difficult journey through critical illness care and can also experience emotional, financial and social problems. So far there has not been much information or agreement on which outcomes and measures need to be looked at.

We wanted to address this by creating a standardised group of outcome measures. To do this, we carried out a scoping review – a thorough review of published research from 2000 to 2024.

What we found

We know that family members of critically ill patients can experience short and longer-term challenges.  To be able to carry out effective, meaningful research into how we support families in the future, we found a clear need for comprehensive evaluation of the measures that are currently being used in research, to examine the impact of critical illness on individuals and the family unit.

We identified over 400 studies which reported the effects of critical illness on patients’ family members. These studies used over 200 different measures and studied family experiences as well as their psychological and social outcomes. Most of the studies were observational – they watched and recorded what happened to the people they followed without trying to change anything. The length of time they followed people varied.

Despite growing proof that patients and their families can face social and financial problems during and after critical illness, only 35 studies looked at these issues, and without empirical evidence (from direct observation, experience, or experiments rather than theory) it will be difficult to understand how improvements can be made in these areas.  Therefore, future research should also find meaningful ways to measure the social and financial challenges family members experience.

In conclusion, studies from 2000 to 2024 used many ways to measure what happens to family members of critically ill patients. We found 218 different measures, and over half of these focused on their emotional and mental health rather than the social or financial problems. Our review highlights the need for a common outcome set to measure what happens to family members after critical illness, and to make sure that any measurements are meaningful and consistent.