Kids and PICS

A SERIOUS ILLNESS OR INJURY CAN BE A SCARY EXPERIENCE FOR A CHILD AND HIS OR HER FAMILY
Post Intensive Care Syndrome (PICS) is a relatively new constellation of symptoms given syndrome definition. PICS encompasses physical, cognitive and mental health issues affecting survivors of critical illness. Doctors are now focusing more on identifying children and families at risk, and instituting preventative and treatment programs. “Surviving a  critical illness is not the end of the saga,” says Dr. Lubinsky. “Today we have many more survivors from the Pediatric Intensive Care Unit (PICU) than in the past. (97% at CHOC Children’s) We are focusing on rehabilitation and re-integrating them into life. The quality of life of survivors of critical illness must be addressed from the first day, and is being woven into the treatment plan. Simply surviving is an insufficient goal.”

FAMILY INVOLVEMENT
“Family centered care promotes involvement in the patient’s care and has changed the environment of care in the PICU,” says Dr. Lubinsky. “Through the increased involvement of families in the child’s care and by minimizing the side effects of sedative medications, patients and families are involved as members of the team.” Parents give input and are given as much control as possible. Doctors discuss the illness and plan with the children. “There are no secrets with the kids,” says Dr. Lubinsky. “We help them to understand.” Care is improved when everyone is involved and understands. “We also have an increased understanding of the side effects of some of the care, e.g. minimizing the side effects of sedative medications, and exercising as much as possible,” says Dr. Lubinsky. “The care is improved when they understand all aspects.”

PREVENTING PICS IN FAMILIES
“It is vitally important for family members to take care of themselves,” says Dr. Lubinsky. His advice for families: “Be involved in the care. We like families to participate in rounds and learn what’s going on. They should have maximum understanding and control. They see that there is a team of people caring for their child and we are open and honest. Families should participate in care. Read to the patient. Keep them oriented. Change a diaper. Those normal activities that you otherwise would be doing are a normal part of coping and feeling like you are a part of the team. I encourage parents to stay with their child as much as possible. It’s a lot better for parents to be there while the child is receiving care. Imagination is worse than reality.”

WHAT IS PTSD?
Families with a very sick child or child in the PICU can be stressed, exhausted, anxious, depressed and feel a sense of grief, all of which can affect their quality of life. Symptoms can include (among others):

  • Persistent re-experiencing of the trauma, or flashbacks
  • Irritability
  • Difficulty sleeping

FAST FACTS

  • Number of days required to recover from one day in an ICU bed: 3
  • Percent of family members of a child in the PICU who will develop PTSD: 10.5 – 21 %
  • Percent of PICU children who will develop PTSD after a critical illness: 5 – 28 %
Dr. Lubinsky
Dr. Paul Lubinsky
CHOC Pediatric Critical
Care Specialist

PHYSICIAN FOCUS: DR. PAUL LUBINSKY

Dr. Lubinsky is the associate director of the Pediatric Intensive Care Unit at CHOC Children’s. He specializes in caring for critically ill children with respiratory and cardiac failure as well as neurological emergencies. He is president of the PSF and Medical Director of CHOC Children’s Specialists and is an associate clinical professor at UC Irvine.

Dr. Lubinsky’s philosophy of care: “When a child is admitted to the hospital, it can be just as scary for the parents as it is for the child. The team treats the whole family. We treat the entire family with the greatest compassion and understanding.”

EDUCATION:
University of Cape Town, South Africa
Pediatric Residency and Chief Resident UCI
Critical Care Fellowship CHOC Children’s

BOARD CERTIFICATIONS:
Pediatrics Pediatric Critical Care

More about Dr. Lubinsky

This article was featured in the Orange County Register on January 14, 2014 and was written by Amy Bentley.

Caring for a Seriously Ill Child – Effect on the Family

marta-sonCaring for a seriously ill child can be a tiring and emotional process.

“Meeting your critically ill family member’s needs is a major part of care, but your needs are just as equally important,” according to CHOC Pediatric Critical Care Specialist Dr. Paul Lubinsky.

“If you are well, you have the physical and emotional strength to support your family member and feel good about it. Take time to understand your family member’s illness and treatment options. Having this information will help you make decisions, feel confident about the decisions made and reduce stress. Ask questions, ask to meet with the care team, and keep a journal. Review the journal with a member of the care team whom you trust to make sense of what has happened and how you are responding to it. Progress often is unrecognized without a definitive timeline. Participating in patient care is another way to support your family member and reduce stress. The bedside staff can suggest activities for those who want to be involved.”

Here are some more detailed suggestions and tips for parents, grandparents, relatives and others involved in the care:

  • Eat healthy.
  • Get enough sleep.
  • Exercise, take a walk or stretch your limbs periodically.
  • Seek support and accept the help and support of family and friends.
  • Keep a positive attitude.
  • Use your faith and engage in spiritual activities, such as meditation or prayer.
  • Read inspirational material.
  • Keep a journal of thoughts and feelings about your child’s progress.
  • Ask a family member or close friend to take messages or to be a representative for you.
  • Organize a network to help with the activities of daily living. Make sure someone looks after your house and pets, and checks your mail and phone messages when you are not at home.

The illness of a child can also affect others in the family, especially siblings. Here are some things to look for or consider with them, so you can reach out for help and develop strategies to deal with any issues that may arise:

  • Children in the family may feel responsible for a sibling’s illness because they had a sibling rivalry or there were tensions between the children in the past. There are a variety of therapists at the hospital available to help.
  • The other children may feel ignored or that you are favoring the sibling who is ill by spending so much time in the hospital.
  • Children may act out or may regress, such as losing bladder control.
  • School performance due to a prolonged disruption in family life.
  • Appoint spokespeople to provide accurate updates or start a blog to keep extended family or close friends informed.

Addressing these issues with the help of a specially trained psychologist or child life specialist, is often helpful. Family therapy may also help in dealing with the stresses of a seriously ill child. CHOC has a strong psychology department that can help, Dr. Lubinsky says.