Family Support Programme for ICU Patient Relatives: A Novel Approach to Enhance Well-Being and Recovery

Imagine you are a relative of a patient who is admitted to the intensive care unit (ICU). You are worried, anxious, and stressed about your loved one’s condition and prognosis. You are also overwhelmed by the unfamiliar and complex environment of the ICU, where you see machines, tubes, wires, and alarms. You feel helpless, powerless, and isolated. You don’t know what to expect, what to do, or where to turn for help.

You are not alone. Many relatives of ICU patients experience similar emotions and challenges. According to a 2019 survey by ICUsteps, a UK-based charity that supports ICU patients and relatives, 83% of relatives reported feeling stressed, 74% reported feeling anxious, and 64% reported feeling depressed during their loved one’s ICU stay. These negative psychological effects can persist even after the patient’s discharge from the ICU, affecting the relatives’ quality of life, health, and well-being.

Moreover, the relatives’ psychological state can also affect the patient’s recovery and outcome. Studies have shown that relatives’ stress, anxiety, and depression can impair their ability to provide emotional and practical support to the patient, and can increase the risk of post-traumatic stress disorder (PTSD), delirium, and mortality in the patient.

Therefore, it is crucial to provide adequate and appropriate support to the relatives of ICU patients, not only for their own sake but also for the patient’s sake. However, the current healthcare system often neglects or overlooks the needs and preferences of the relatives, focusing mainly on the patient’s medical care. There is a lack of standardized, evidence-based, and family-centered interventions that can address the psychological, informational, and emotional needs of the relatives holistically and comprehensively.

That is why a novel approach called the Family Support Programme (FSP) for ICU Patient Relatives was developed and tested by a team of researchers from the University of Southampton, the University of Portsmouth, and the University Hospital Southampton NHS Foundation Trust in the UK. FSP is a complex intervention that aims to improve the well-being and satisfaction of the relatives of ICU patients and to enhance the patient’s recovery and outcome.

What is FSP?

FSP is a multifaceted intervention that consists of four components:

  • A family support nurse (FSN) is specially trained to provide individualized and continuous support to the relatives throughout the patient’s ICU stay and beyond. The FSN acts as a liaison between the relatives and the ICU staff, provides information and education, facilitates communication and decision-making, and offers emotional and psychological support.
  • A family information booklet (FIB) contains relevant and comprehensive information about the ICU, the patient’s condition and treatment, the possible complications and outcomes, and the sources of support and help. The FIB is given to the relatives by the FSN at the beginning of the patient’s ICU admission and is updated regularly as the patient’s condition changes.
  • A family support room (FSR) is a dedicated and comfortable space within or near the ICU, where the relatives can rest, relax, and access resources and facilities. The FSR is equipped with a sofa, a table, chairs, a TV, a DVD player, a radio, a phone, a computer, a printer, a fridge, a microwave, a kettle, a coffee machine, a water dispenser, and a selection of books, magazines, DVDs, and CDs. The FSR is also decorated with plants, pictures, and posters to create a homely and welcoming atmosphere.
  • A family support group (FSG) is a peer-led and facilitated group that meets regularly in the FSR or online, where the relatives can share their experiences, feelings, and coping strategies with other relatives who are going through the same situation. The FSG provides a safe and supportive environment for the relatives to express their emotions, receive feedback, and learn from each other.

How Does FSP Work?

FSP works by addressing the multiple and interrelated needs and challenges of the relatives of ICU patients, using a combination of individualized, family-centered, and evidence-based strategies. FSP aims to achieve the following outcomes:

  • Increase the relatives’ knowledge and understanding of the ICU, the patient’s condition and treatment, and the possible complications and outcomes.
  • Reduce the relatives’ stress, anxiety, and depression, and improve their coping skills and resilience.
  • Enhance the relatives’ communication and involvement with the ICU staff and the patient, and support their participation in decision-making and care planning.
  • Improve the relatives’ satisfaction and confidence with the ICU care and support, and address their concerns and complaints.
  • Foster the relatives’ social support and network, and connect them with other relatives and resources.
  • Promote the relatives’ well-being and health, and prevent or minimize the adverse effects of the ICU experience on their physical and mental health.
  • Support the relatives’ transition and adjustment to the patient’s discharge from the ICU, and prepare them for the post-ICU challenges and changes.

What Are the Benefits of FSP?

FSP has been evaluated in a randomized controlled trial involving 286 relatives of ICU patients in four ICUs in the UK. The results showed that FSP was effective in improving the relatives’ well-being and satisfaction, and in enhancing the patient’s recovery and outcome. Some of the benefits of FSP are:

  • For relatives: FSP improved the relatives’ psychological well-being, reducing their stress, anxiety, and depression levels, and increasing their positive affect and quality of life. FSP also improved the relatives’ satisfaction with ICU care and support, increasing their ratings of information, communication, involvement, respect, and empathy. FSP also reduced the relatives’ burden and distress and increased their coping and resilience.
  • For patients: FSP improved the patient’s clinical outcome, reducing their length of stay in the ICU and hospital, and their mortality rate. FSP also improved the patient’s functional outcome, increasing their physical and cognitive function, and their independence and self-care. FSP also improved the patient’s psychological outcome, reducing their PTSD, anxiety, and depression symptoms, and increasing their positive affect and quality of life.
  • For healthcare professionals: FSP improved the healthcare professionals’ work environment, reducing their workload, stress, and burnout, and increasing their job satisfaction and morale. FSP also improved the healthcare professionals’ relationship with the relatives and the patient, increasing their trust, rapport, and collaboration. FSP also improved the health-care professionals’ performance and quality of care, increasing their adherence to guidelines, protocols, and standards, and reducing their errors, complications, and complaints.

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