Recovery from a serious illness often starts in the hospital but does not always mean a quick return to normal life. Many families find that physical, cognitive and emotional health changes continue after hospital discharge. These changes are known as Post-Intensive Care Syndrome (PICS).
Symptoms
The following symptoms are associated with PICS:
- Physical health problems: Weakness and fatigue
- Cognitive changes: Changes in memory, attention, and problem-solving
- Emotional and behavioral problems: Depression, anxiety, post-traumatic stress symptoms, unpredictable or uncontrollable outbursts
PICS-Family
Parents and siblings can also experience a form of PICS called PICS-Family. Symptoms include:
- Mental health issues: Stress, anxiety and depression
- Daily life changes: Feeling overwhelmed, changes in sleep and eating patterns
- Behavioral changes: Irritability or moodiness, loss of enjoyment in activities, isolation and loss of social connections
Risk factors
- Children at higher risk:
Those treated with mechanical ventilators, requiring medicine for low blood pressure, experiencing delirium or having PICU stays longer than a week. - Family members at higher risk:
Those who have had to make life and death decisions for their loved ones, experiencing anxiety, depression, or post-traumatic stress during the child’s PICU stay and feeling overwhelmed at any point during their child’s illness.
Personal experiences
- “Seeing and hearing things happening in other rooms was often scary, especially at night or if there weren’t people in the other room.”
- “Transitioning back home was the most difficult part… it took a long time to get used to the routine.”
- “I felt scared and overwhelmed… I wasn’t sure what was happening or who to ask when I had questions.”
Support and recovery
It’s important to acknowledge that recovering from a stay in the PICU takes time. We understand the difficulties and are here to help families through this challenging period.
Resources
After PICU
Seattle Children’s Research Institute | University of Pennsylvania
Provides crucial information and support for families transitioning home after a child’s stay in the pediatric intensive care unit (PICU). It covers topics such as common challenges faced during recovery, emotional impacts on the family, practical tips for caregiving, and strategies for ensuring the best possible outcomes. The website aims to empower families with knowledge and resources to navigate this critical period effectively.
You may also benefit from a referral from your PICU social worker, who will have more information about PICS for you.
Ask your nurse for a social worker to visit with you.
Diagnostic figures
