Improving the Patient Experience in Pediatrics

through Trauma-Informed Care

Presenters: Jenaya Gordon, MA, CCLS, NCC

Alisa Thomas, MSW, LCSW

Agenda

• Learn common traumatic reactions & grief responses experienced by infants, toddlers, children and teens

• Become familiar with ways parents/caregivers can support their children after a traumatic event

• Increase awareness of how trauma impacts patients/families abilities to cope with medical experience

• Explore ways to ensure the emotional safety of patients/families:

The Roles of Child Life & Social Work in the Pediatric Setting

Understanding reactions to trauma will help medical staff:

Normalize reactions of both children and their caregivers

Understand patients’ reactions to medical treatment

Anticipate patient/families’ needs

Provide trauma-informed care

Ensure emotional safety

Emotional safety – creating an environment where the patient/family’s emotional being is considered, respected and protected. Trauma-informed care (TIC)- a universal, systemic approach that is grounded in an understanding of, and responsiveness to, the impact of trauma. (Adapted from BC MHSU, 2013)

“Trauma-informed care …emphasizes physical, psychological, and emotional safety for both providers and survivors…” (Hopper, Bassuk, & Olivet, 2010, pg82) Language Care (emotional & medical) Environment

Emotional Safety

Trauma-Informed Care

Infant/Toddler Reactions to Trauma

birth-2yo

The child: • Acts clingy

• Doesn’t want to be alone or away from parents

• Withdraws (doesn’t talk or play)

• Has trouble sleeping or has nightmares

• Regresses (starts wetting pants again, crawls instead of walks, uses less words)

• Is irritable, scared or fussy

The child: • Tells the story over and over

• Feels guilty and thinks his/her thoughts or actions caused the trauma

• Acts out what happened

• Stops doing things they’ve just learned/acts younger than age (wets pants, has a hard time reading or writing)

• Has trouble sleeping or has nightmares

• Experiences behavior or mood changes (gets clingy, aggressive, sad, withdrawn)

• Doesn’t want to be alone or away from parents

• Feels physically sick ( headaches, stomachaches)

Preschooler Reactions to Trauma 3yo-5yo

School-Age Reactions to Trauma 6yo-12yo

The child: • Tells the story over and over • Doesn’t want to be alone or away from parents • Feels guilty or responsible for the trauma • Acts out what happened • Stops doing things they’ve learned/acts younger than age (wets

pants, has a hard time reading or doing math.) • Has trouble sleeping or has nightmares • Has behavior or mood changes (gets aggressive, sad, withdrawn) • Feels physically sick (has headaches or stomachaches) • Has problems focusing at school or finishing tasks like homework • Is very aware of how adults are reacting and feeling about the

trauma

Teen Reactions to Trauma 12-18yo

The teen:

• Tries to bury or avoid feelings of shame, sadness, and fear

• Fees guilty or responsible for the trauma

• Doesn’t want to talk about what happened or about his/her feelings

• Has trouble sleeping or is having nightmares

• Experiences behavior or mood changes (aggressive, sad, withdrawn)

• Starts having problems with friends

• Feels physically sick( headaches or stomachaches)

• Has problems focusing at school, doing homework, and finishing tasks

• Starts doing impulsive or risky things (driving fast, using drugs and/or alcohol)

Information Processing and Stress Appraisal

in Unfamiliar, Threatening Situations

Low Information

High Uncertainty

Low Perceived

Control

High Threat

Appraisal

High Emotional

Distress

Ineffective Information Processing

Gaynard, Laura, John Wolfer, Joy Goldberger, Richard Thompson, Lisa

Redburn, and Lesley Laidley. Psychosocial Care of Children In Hospitals: A

Clinical Practice Manual From the ACCH Child Life Research Project. Print.

How children’s reactions can impact medical care

• Difficulty separating from caregivers

• Emotionally overwhelmed

• Trauma flashbacks

• Heightened fear= heightened pain appraisal

• Fight or Flight state may cause combative/uncooperative behavior

How parent’s reactions can impact medical care

Parent reactions: • “Trauma brain”- unable to retain info, forgetfulness, difficulty problem

solving • Emotionally overwhelmed • Overwhelmed by tasks and visitors • Feel helpless

Ways parent reactions may impact their child’s medical care: • Will need information repeated and provided verbally and in writing • May have bursts of anger, sadness, expression of fear • May minimize child’s trauma reactions to avoid facing the trauma

themselves • Might attempt to regain control in ways that can be frustrating to staff

• declining or demanding certain services/staff involvement • Appearing to be “over protective”

Using Trauma-Informed Care with Pediatric Patients & Families

• Medical Procedures: – Have CL provide preparation and support – Utilize Positioning for Comfort – Avoid holding pt down – Advocate for pre-medication, sedation, etc – Use treatment room to keep bed a safe place

• Advocate for pre-med prior to OR

• Explore possibility of meds for anxiety for pt • Give parents medical information before giving it to the child • Include the appropriate emotional support services for both

parent and child

Questions?

Ensuring Emotional Safety

Addressing emotional needs

Giving the child/teen information

Delivering life-changing news

Creating an emotionally safe environment

Caregiver self-care

Addressing Emotional Needs

Make appropriate referrals to address fear/anxiety, coping , basic needs (Child Life, Social Work)

For children/teens:

Validate feelings & normalize responses

• “This is all really scary. You are safe and we’re taking care of you.”

• “Sometimes when we’ve been through something really scary it can be hard to (hold still, stop crying, etc.).”

• Avoid telling them to be “brave”, “strong”, “like a big kid”, etc

Create ways to return control by giving appropriate choices

For parents:

• Utilize child life

• Start with small amounts of information, especially if pt has been unconscious, sedated, or has a brain injury.

• When pt arrives in ED: “You are hurt and are the hospital. All these doctors and nurses are here to help you. You are safe. We just need to check your body to see where you are hurt. You are going to feel (a little pressure, a quick poke, my fingers gently touching you, etc).”

• When pt wakes up: “You are hurt and are at the hospital. Your family and the doctors and nurses are here to help you. You are safe.”

• Avoid giving details at first. Wait until they are feeling more physically and emotionally safe. If they press for more keep it simple. Say “We want to see if your (neck, head, body, arms/legs, etc) is hurt. When we know exactly what’s hurt we can talk about how we’re going to help you. For now, let’s focus on (watching a movie, talking with family, etc).”instead of something like “We think you’re bleeding in your stomach” or “you have a lot of broken bones and deep cuts” etc.

Giving the child information

Soft Language

Describe sensory experience and duration, use positive wording for expectations

Instead of saying…

“The IV will hurt…”

“The medicine will burn…”

“It’s a needle that goes in your arm”

“Just breathe”

“We’re giving you a paralytic now”

“It won’t hurt”

Try saying… “You’ll feel a quick poke or pinch”

“The medicine may feel cold or warm going in but that will only last a few seconds”

“I’m going to slide this little straw into your vein/blue lines”

“Watch me. Let’s practice taking a big, slow breathe together.”

“You’re getting medicine to help you sleep and hold still for a little while”

“Some kids say it feels like… (a pinch, a tight squeeze, pressure)

Soft Language

Describe sensory experience and duration, use positive wording for expectations

Instead of saying…

“Don’t move while I do this”

“If you move you’ll make it worse”

“Be a big boy and stop crying”

“I have to tie this on your arm”

“We’ll put you to sleep”

Try saying…

“Your job is to hold very still”

“Holding still will keep you safe”

“It’s ok to cry when you feel scared or hurt”

“I’m going to tie this rubber band around your arm. It will help me put the straw in your arm for medicine. It will only squeeze for a minute, then I’ll take it off”

“We’ll give you special sleep medicine so you’ll be safe and asleep while we help your body. You’ll wake up when we’re done.”

Soft Language to explain medical procedures

CT scan: “We need to take pictures of your body to find out if you’re hurt on the inside. We will carefully move you to a little bed which slowly moves into the center of a big camera. The camera looks like a donut. The camera makes whirring and clicking sounds when it takes the pictures. The camera won’t hurt you or touch you and there are no pokes. Your job is to hold very still like a statue. The pictures will take less time than one cartoon show. “

Sutures: “We need to close your cut with little string so that it will get better. We are first going to lightly squirt some cold clean water on it. Then we’ll gently rub a little numbing lotion which will protect your skin from feeling much. (If using lidocaine) We’re going to give you extra medicine to protect your skin so you won’t feel us putting the string on. You may feel a couple quick, tiny, pokes. Some kids say the numbing medicine feels very cold when it’s going in, others say it feels warm. You can tell us how it feels for you. Then we’re going to use this string holder which looks like scissors, but they’re not. They don’t cut any thing, they just hold the string for me. Then we’ll use the string to close your cut and hold your skin together, just like you use shoelaces to hold the sides of your shoe together. You may feel a little tugging. Your job is to hold very still like a statue. Do you want to watch while we put the string on, or look away?”

Dressing: clean bandages

IV: “We’re going to put a tiny straw that goes in your (hand, arm, etc). This is how we’ll give

your body medicine while you’re at the hospital. You may feel a quick poke as we put

the straw in. Your job is to hold very still.” (avoid words: needle & hurt)

Surgery: “Surgery is a way the doctor’s can help your body but you will be asleep so you won’t

feel it. You’ll get special hospital sleep medicine that goes right into the straw on your

hand. You won’t need a poke. The medicine’s job is to make sure you are in a deep, safe,

hospital sleep while the doctor’s help your body. That way there’s no chance you’ll see

anything, or feel anything during your surgery. There’s also no chance you’ll wake up too

soon. When the doctor’s are done helping your body, they’ll stop giving you the sleepy

medicine and you’ll wake up. Once you’re awake your family will be with you.”

(avoid words: put you to sleep, knock you out)

External Fixators: “The bones in your (leg, hip) are broken and need to be fixed. You will have

surgery so that you can be asleep when the doctor fixes it. When you wake up after

surgery, you’ll have some metal bars attached to your leg. Their job is to hold your

bones still while they heal. Once your bones heal (in a few weeks, months) the doctor

will carefully take the bars off. We’ll talk more about that when it’s time. For now, you

can help keep your leg safe by…” (avoid words: screwed into your leg)

Extubate: “Your body is getting better and you don’t need this tube in your mouth to breath

anymore. Because you can breath just fine on your own now, we are going to take this

tube out. First we will suction (remind pt of what that feels like), then we’ll take the

tape off of your face. You’ll feel a little tugging like when a tight band-aide comes off.

Then your job is to take a deep breath in and blow out as hard as you can. While you’re

blowing out, the doctor will carefully and quickly slide the little tube out of your

mouth. The whole thing will take less time than it takes to watch a commercial break.”

(Avoid word pull or yank)

Foley: “You can get up to use the bathroom now, so you don’t need this tube to drain your pee. Your job is to hold

still and when we say, take a deep breath in and slowly blow it out. As you’re doing that, we’re going to carefully

and quickly slide this little tube out. It will be over in less time than it would take you to count to 30.” (Avoid word

pull or yank)

Drains: “There was extra water/blood in your (X) that needed to come out of your body. So the doctor put a little

straw on your (x) to drain it. Your body is getting better and now you don’t need the drain anymore. We’re going

carefully take the tape off (use adhesive remover) so you’ll feel some tugging on your skin. Do you want the tape

to come off slowly or fast? Then we’ll snip the string that’s attached to the tube. Your job is to hold still. Once the

tape is off and when we say, your job is to take a deep breath in and slowly blow it out. As you’re doing that, we’re

going to carefully and quickly slide this little tube out. Some kids say they can feel the tube wiggle in their bodies

as it’s coming out. You’ll have to tell us how it feels for you. Then we’ll cover that spot with a little bandage. It will

be over in less time than it takes to watch a commercial break.” (Avoid words: cut, pull/ yank and using the

comparison- it feels like a snake/worm coming out of you)

Delivering Life-Changing News in the appropriate manner, at the appropriate time, by the appropriate people

Make sure the child/family do not passively learn the information

• Avoid talking about dx/prognosis/events around the patient and parent

(when talking to each other, during hand-off/report, etc.)

• Turn TVs off if media is reporting on the situation

Be mindful of how the parents are told

• The parents deserve to be told privately before telling the child/teen

• Include Social Work for emotional support

• Once the parents have been told, create a plan for telling the child

Consider timing when telling the child/teen

• They deserve to be told in a developmentally & emotionally sensitive manner, by the people they trust and love

• Create plan first

• Include child life or psychology

• Consider medical procedures/medications

• Brain injury/concussion (oriented to time & place?)

• Is family present to support pt

Explaining Death to Children

• A child’s capacity to understand death varies depending on developmental level

• Be honest, encourage questions, and listen to/accept child’s feelings

• Assess what your child already understands or thinks is happening, so you know how to gear your conversation

Do not use words such as “asleep” or “went away” or “passed away”- This can be confusing for children or may make them think that that the person may eventually return

• Explain death in simple, concrete terms:

• The person’s body stopped working and doctors were unable to fix it. Say the person is “dead.”

• Dead means that the brain stopped thinking, the heart stopped beating and the lungs stopped breathing. The person no longer feels, eats or thinks anymore.

• The person will not be returning.

Delivering Life-Changing News

How to respond when you cannot answer the child’s question yet:

Fatality: “I know it’s really hard not to know what’s happening with ___. Once we know more we will tell you. For now, we need to focus on helping you by…”

Paralysis, possible amputation, etc: “We don’t know for sure yet what might happen. I know it’s really hard not to have answers. When we know more we will tell you. For now, we need to focus on helping you by…”

Questions?

Creating an Emotionally Safe Environment

Avoid making pt/family re-tell or re-hear the details of their injuries and of the event:

• When medical staff are giving report or rounding, step outside. Especially if there are fatalities or life-changing injuries.

• Encourage parents to have someone post or answer texts on their behalf

• Have parents step outside of the room to give family/friends updates

Make sure the pt does not find out information from TV, social media, or texts/calls:

• Put a sign on the door & on the TV

• Give the pt’s phone to family

• Communicate plan with staff & family

Make sure the pt does not see himself accidentally before preparation/plan:

• If getting up to go to the bathroom, cover mirror

• Reflective surfaces in the elevators

• Skype, camera in phone, etc Be aware of possible trauma reminders:

• Be mindful of themes in TV shows/movies

• Pay attention to what stuffed animals/toys you provide

For patient’s emotional well-being, please:

• Do not turn TV or radio on (you can use DVD player)

• Do not use internet/social media while in the room

• Do not discuss medical or social information in the room (family will step out to speak with you)

Thank you!

• Please be aware that I can hear you.

• Please have conversations about medical issues and about what happened outside

of the room.

• Please let me know what you are doing when you enter the room/before you touch me.

Thank you!

Caregiver Self-care •Tune into your own thoughts, emotions and physical reactions prior to, during and after meeting with trauma survivors

•Block yourself from visualizing or re-telling yourself the story

•Establish boundaries

•Utilize deep breathing to calm emotions

•Find symbolic ways to let emotions and experiences go

•Find a colleague, supervisor or utilize your team to debrief the experience

•Be aware of signs of secondary trauma

•Continue your education

Ensuring your own emotional safety with Self-Care

“We cannot give to children what we

have not given ourselves”

(Steele and Malchiodi, 2012, p. 167)

“ We owe it to the future not to harm our

children in their hearts and minds while we

cure their diseases and repair their broken

bones.”

Association for the Care of Children`s Health

Resources for Families Books Heegard, M. (1991). When something terrible happens: Children can learn to cope with grief. Bloomington, MN: Woodland Press.

Holmes, M. (2000). A Terrible Thing Happened. Washington, DC: Magination Press.

Online National Child Traumatic Stress Network

Information for caregivers:

http://www.nctsnet.org/resources/audiences/parents-caregivers

Information for kids:

http://www.nctsnet.org/sites/default/files/assets/pdfs/What_Do_I_Say.pdf

After the Injury

Information for caregivers: http://www.aftertheinjury.org/tools-parents-help-their-children-and-themselves-recover-injury http://www.aftertheinjury.org/sites/ati/files/aftertheinjury_helpingmyselfcope.pdf

Information for kids:

http://www.aftertheinjury.org/sites/ati/files/aftertheinjury_tipsforkids.pdf

Palo Alto Medical Foundation

Information for teens:

http://www.pamf.org/teen/life/trauma/

Contact Information: Jenaya Gordon, MA, CCLS, NCC Associate Clinical Manager, Child Life Dept. PICU Child Life Specialist Children’s Hospital Colorado

720-777-5113 Jenaya.gordon@childrenscolorado.org

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