The Texas Education Agency (TEA) defines children as “medically fragile” if they are between the ages of birth and 22 and:
- have a serious, ongoing illness or a chronic condition for at least 12 months or has required at least one month of hospitalization, and that requires daily, ongoing medical treatments and monitoring
- require the routine use of medical devices or of assistive technology to compensate for the loss of usefulness of a body function needed to participate in activities of daily living
- live with ongoing threat to his or her continued well-being
Examples, according to the TEA, include children who require a ventilator, have a tracheostomy or gastrostomy tube, congestive heart problems, kidney dialysis, or other conditions where their health is “tenuous to the point of being life threatening.”
Conditions and disabilities that can lead to children being considered medically fragile include:
- congenital or hereditary conditions such as spina bifida, sickle cell anemia, cystic fibrosis, heart, lung defects
- cerebral palsy
- muscular dystrophy
- failure to thrive
- HIV positive and symptomatic
Because of medical advances, children who are born extremely premature or have critical illnesses are surviving and are increasingly being cared for in the home. Medically fragile children are at risk of long-term health and developmental issues.
What You Might Notice
Children may require:
- a feeding tube through the nose, stomach or small intestine
- IV therapy
- cardiovascular monitoring
- a ventilator or oxygen support for breathing
- kidney dialysis
- urinary catherization
Medical conditions vary in how they affect children. Some children spend most of their time in bed and appear to be unresponsive, but may still be aware of what people are saying and what is going on. Others can participate in daily activities such as school.
Illness and injury in children are potentially traumatic to both children and their families, the National Child Traumatic Stress Network (NCTSN) notes.
- Children and parents often feel frightened, helpless, and vulnerable.
- The ability of the family to function and cope is often challenged.
- Many children and their family members experience some traumatic stress symptoms. A smaller number experience more severe and persistent Post-Traumatic Stress Disorder (PTSD) symptoms.
However, NCTSN also notes that there are promising models for helping to screen, prevent, and treat post-traumatic stress in health care settings for children and families.
Before Meeting the Child
- Consult with health care professionals about the child’s medical condition. Ask how it impacts their daily functioning, ability to communicate, and cognitive and physical functioning.
- For children who do not respond, talk to the people who know them best about how they indicate their preferences and choices.
- If the child is school age, consult with teachers, therapists, and the child’s Individual Education Plan (IEP) about the condition and its impact, and methods the child uses to function in daily life.
- Schedule the interview when the child will be most alert.
- Talk to others about family dynamics. Caring for children with significant healthcare needs can put tremendous financial, mental, and emotional strain on a family.
- Children who are medically frail may not be getting the medical or basic personal care they need.
During the Meeting
Children who are considered medically frail can have any number of symptoms and a range of intelligence, understanding, and ability to communicate. Many medically frail children are under the age of 3.
If the child is too young or unable to participate in the investigation or interview, follow your protocols for investigations of young children.
Provide information that is clear, simple, and easy to follow.
If the child is able to participate in an interview, you may need to schedule interviews around medical needs and schedules.
Some medical conditions or treatments may make it difficult for children to concentrate, follow instructions, and retain information.
Ask about signs and symptoms you need to know in an emergency.
Be flexible. The child may not be able to make it to scheduled appointments if their medical condition changes. They may need to do interviews from home or from the hospital.