Medical Information

Tools for Families

Tips, Tricks, Support and more for families and caregivers.

Caregiver Journal

• Your Voice Matters: Coping with Your Child’s Hospital Stay
  From the Johns Hopkins Children’s Center

Phone Tips for Families

• Make the most out of a call with your healthcare provider
  From the Children’s Hospital of Philadelphia

Daily Notes Worksheet for Families

• Helpful Daily Notes Worksheet for Families
  When your child is receiving care it can be difficult to keep track of all the information. This worksheet can be used as a helpful daily tool.

Tips for meeting with Health Providers

Caregiver Support

Talk with hospital staff to see what resources are available for you this may include a hospital library, social worker, support group, and/or spiritual care.

Tips

• Take care of your own physical and emotional needs. This can including eating well, taking time to rest, taking breaks (go for a walk, visit with a friend, etc.), exercising, journaling, spending “quality time” with your other children, etc. It is important to meet your own needs so you can continue to support your child/family and minimize burnout.
• Find a family or friend that you can confide in about the challenges you face, emotions you experience, and for support.
• Think about ways family/friends can help and let them help you. This may involve sitting with you, listening, helping with errands, assisting with grocery shopping, etc.
• Acknowledge that you may experience a variety of emotions and this is ok. Take time to recognize when you begin experiencing burnout and seek out help/support.

Resources

• Additional information on the impact of a brain injury on family members can be found here. (English, Spanish)
• Family Caregiver Alliance “Take care of YOU: Self-care for Family Caregivers”

Talking with your Children

Talk with hospital staff to see what resources are available for you this may include a hospital library, social worker, child life specialist, and/or spiritual care.

Tips

• Use language that is appropriate to both your child’s age and level of understanding. Be mindful that the words you use as they may seem frightening, confusing, or have a double meaning for children.
• Keep in mind that communication occurs not only through your words but your tone of voice, facial expressions, and body language. Children will pick up on your emotions through a variety of means.
• Discuss what to expect with your children. Take into account how they may feel emotionally, what they may feel physically, sights, sounds, smells, and what equipment may be used/seen. This may relate to your child with a brain injury (example: upcoming procedure) or with the child’s siblings (example: what to expect when they visit their brother/sister in the hospital).
• Acknowledge that they may experience a variety of feelings and that this is okay.
• Encourage your children to discuss what they are experiencing. It may be helpful to ask what is on their mind, if they have concerns, and/or their understanding on a specific topic. It may be easier for them to express feelings/learn through journaling, playing, drawing, etc.
• Your children may express feelings in a variety of ways such as changes in behaviors which may involve acting out, being clingy, withdrawn, return to younger behaviors (thumb sucking), etc.
• Try to maintain familiar routines and “quality time” for your other children.
• Prepare your child’s siblings for how to address questions that others may ask them.
• Remember that everyone copes differently.

Additional Information on Supporting a Child's Siblings

• The Children’s Trust “Siblings of Children with Acquired Brain Injury“

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Recovery Process

A look at the recovery process as well as myths and facts to set the record straight.

• The Recovery Process

Myths and Facts About Recovery

MYTH Recovery will take about a year.

FACT When a child has a brain injury, the concept of recovery may be misleading.

Recovery typically means someone has lost abilities temporarily and will regain them such as a broken arm. For a person with a brain injury, although they may look the same, the changes are most likely long-lasting and adjustment is an ongoing process.

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MYTH Recovery ends six months after the brain injury.

FACT There is no definite end point or timetable for recovery.

Recovery is most rapid in the first six months to a year after the brain is injured, but it continues long after. The term “plateau” describes the stage of recovery when the rate of improvement slows. Reaching a plateau means that the child is moving into the more gradual stage of long-term recovery, but NOT the end of progress. It is best to think of recovery as a continuum, rather then an end point. Also, it is important to note that the timetable for recovery varies from person to person.

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MYTH A brain injury heals with time.

FACT It takes longer for all the effects of a brain injury to show up in children.

Brain development continues through adolescence and into a person’s mid- to late twenties. All the effects of a brain injury may not be known right away. Children are more active, schoolwork becomes more complex, and responsibilities increase over time. The brain of a growing child is steadily challenged to do more complex thinking, communicating, and learning. Over time, new difficulties may appear that are directly related to the brain injury. It is harder for people to connect an earlier brain injury with later difficulties in behavior and learning. For the child who has a brain injury, time reveals as well as heals.

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MYTH Younger children heal better – a young brain can heal itself.

FACT There is increasing evidence that you children’s brains are particularly vulnerable to early brain trauma.

Cells that are in a rapid state of development are more susceptible to damage. Future brain development may be impacted by early brain injury.

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MYTH Younger children recover better than older children.

FACT The younger the child is when injured, the less developed is the brain.

It takes longer to see the effects of a brain injury in a young child because basic skills like language, arithmetic, reading, and writing are still developing. The young child is still learning basic social skills and relies on adults for supervision and guidance. Younger children are at greater risk for difficulties in the future because early brain development has been interrupted.

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MYTH Physical recovery is a sign that the brain has healed.

FACT Cognitive recovery is different than physical recovery.

Cognition is a term experts use to describe abilities like reasoning, memory, and attention. Changes in learning, memory, and behavior are the most common long-term effects of brain injuries among youth. It is hard for people to understand that a child who looks “okay” physically may still have a disability. Recovery of physical abilities like walking and speaking does not mean that the brain has healed. Broken bones and cuts heal with the growth of new bone and skin, but the brain does not heal as easily.

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MYTH How quickly a child recovers from a brain injury depends mainly on how hard they work at recovering.

FACT No two children with brain injuries are alike and recovery varies widely between children with similar injuries. It is unfair to a student to make predictions or judgments about their progress.

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MYTH When a student looks good, they are fully recovered.

FACT The better a student looks, the harder it is to recognize their learning and cognitive needs. This is common because physical recovery typically comes before cognitive recovery and happens at a faster rate. Often students are misidentified as having attention or learning problems after their physical injuries have healed.

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Medical Terms

Medical terms and information of terms with medical information.

• List of Medical Terms

Source: Brain Injury Alliance of New Jersey “Acute Brain Injury: A Guide for Family and Friends”

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Helping Professionals

A list of professionals, acronyms and more.

Social Worker

Hospital

Hospital social workers help address concerns around diagnosis, what to expect, provide short-term counseling, and address needs upon leaving the hospital. They work to ensure everyone understands your child’s health care plan and can help address any miscommunication. They can arrange meetings between your family and the health care team. They are available to provide information and address questions on resources (around transportation, lodging, transfers to other medical facilities, services for home, etc.)

School

School social workers interact with the student, family, school and community as needed to support academic/social success. They may help the student with school adjustment, developing positive behavior strategies, and learning appropriate social skills, and they can help connect the student/family with school and community resources. The school social worker may also be involved with IEP meetings.

Psychologist

Hospital

Hospital psychologist evaluate and treat mental health needs. They focus on the cognitive, emotional and behavioral factors as it relates to your child’s physical health/complex conditions. The health care team may need to make a referral to involve a psychologist in the care of your child. A neuropsychologist (a psychologist with specialized training in brain/behavior relationships) may work with your child to assess thinking, memory, judgment, behavior, etc.

School

School psychologists work with families and school professionals to help support students’ learning. This may involve activities such as psychological and academic assessments, promoting positive behaviors, reinforcing positive coping skills, helping to adjust classroom environment/routines to improve student learning, assessing emotional/behavioral needs, etc.

Speech Therapist

Hospital

Hospital speech therapists work with your child to assist them with any difficulties they may have speaking or swallowing due to the injury.

School

School speech therapists work with student’s IEP team when he/she has communication difficulties that impact the educational setting (classroom activities, social interactions, literacy, etc.). This may involve working on speech fluency, articulation, functional communication, pragmatics (rules for social language), reading, etc.

Occupational Therapist

Hospital

Hospital occupational therapists assess and provide treatment with regards to your child’s activities of daily living. They work to improve an individual’s ability to dress, bath, use the bathroom, etc.

School

School occupational therapists work with the student’s IEP team so your child can participate within the school setting. This may involve working on self-help skills, functional communication, as well as fine, gross and visual motor skills.

Physical Therapist

Hospital

Hospital physical therapists evaluate and treat a person’s ability to move the body. They work to improve the child’s physical function by addressing muscle strength, flexibility, endurance, balance, and coordination.

School

School physical therapists work with the student’s IEP team so your child can function within the school setting. This may involve working on balance, mobility, transfer skills, etc.

Nurse/Nurse Case Manager

Hospital

A nurse on the floor where your child is hospitalized will help manage your child’s symptoms, administer medications, assist with daily care needs, and respond to the needs of the child/family. Nurses work closely with the doctors to help care for your child.

During a hospital stay a Nurse Case Manager may also work with your family. This nurse works with the health care team to assess your child’s needs so they may assist with discharge planning (providing resources/education, helping with follow-up appointments, ordering medical equipment for home, coordinating with insurance companies to ensure access to care, etc.)

School

The school nurse assists in the development/management of school health policies, school health programs, student health care plans, health screenings, etc. He/she may oversee health assistants within each school who are available to address the concerns/symptoms of students during the school day. School nurses are typically not assigned to a specific school but instead cover multiple schools.

Medical Doctor

Hospital

The doctor will manage the care of your child. He/she works to determine what is the best care and treatment for your child. Specialty doctors (such as: neurologists, surgeon, etc.) may also be consulted or involved in directing the care of your child.

Community

Community based doctors provide medical care to your child when they are not in a hospital setting. They will manage the care of your child, assess progress, and determine best treatment. Follow-up appointments may be recommended/scheduled with a primary care physician and/or a specialist when you leave the hospital setting.

Pastoral/Spiritual Care

Hospital

Pastors or clergy of varying denominations are available to listen, talk, pray, and provide spiritual support for children and their families while they are hospitalized. They are available to support families of all faiths.

Child Life Specialist

Hospital

Help educate and prepare your child for what to expect during procedures and during their hospital stay. Engage children in play and recreational activities to promote effective coping. They work with the entire family which can include support for siblings who may be affected during this difficult time.

Acronyms of Helping Professionals:

• DC – Doctor of Chiropractic
• DO – Doctor of Osteopathy
• FP – Family Practitioner
• LCSW – Licensed Clinical Social Work
• MD – Medical Doctor
• MPH – Master of Public Health
• NP – Nurse Practitioner
• OT – Occupational Therapy
• PA – Physician Assistant
• PCP – Primary Care Physician
• PharmD – Doctorate of Pharmacy
• PT – Physical Therapy
• RN – Registered Nurse
• SLP – Speech Language Pathologist
• SW – Social Worker

For more information on hospital staff visit Children’s Hospital Colorado-“Who’s Who in the Hospital”

Source: Information on this page was obtained and adapted from the following: Gillette Children’s- SW, C.S Mott’s Children’s Hospital, CDE- SSW, SSWAA, Gillette Children’s- Psych, Nationwide Children’s, Brain Injury Alliance of New Jersey, NASP, JHH- PM&R, ASHA, CDE- OT, CDE- PT, BIAUSA, Seattle Children’s, NASN, CDE- School Nurse, Children’s Hospital Colorado, JHH- Children’s, Child Life Council,

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