On Tuesday, Cook Children’s Health Care System celebrated the grand opening of a new space dedicated to the siblings of children with medically complex needs. It’s called the Panda Cares® Center of Hope Sibling Support Center and is located inside the newly expanded Dodson Specialty Clinics building at Cook Children’s Medical Center – Fort Worth.

The Panda Cares Center of Hope Sibling Support Center offers the siblings of Dodson Specialty Clinic patients a place to play, create and connect with other children whose families face similar challenges while their brother or sister attends clinic appointments. It also relieves the stress of parents and caregivers so they can concentrate on their child’s medical appointments knowing their other children have a safe and supportive space dedicated to their well-being, too.

The complex medical needs of a child with a chronic condition or life-changing injury can strain the mental and emotional health of the whole family, including brothers and sisters, according to Audra Trussell, coordinator of the Panda Cares Center of Hope Sibling Support Center.

“We are really focused on the sibling’s emotional and psychosocial care,” Trussell said. “A lot of times, they don’t need as much attention as their chronically ill brother or sister so they may feel a little left out and dragged around from appointment to appointment. At this center, we’re able to focus on those kids, give them the care they deserve as well, help them process their feelings and what they are experiencing, and make them feel like a member of the Cook Children’s family, too.”

The center is staffed by Trussell, who has a background in child development, and Judith Siharath, Panda Cares Center of Hope Sibling Support Center assistant, who has experience in psychology and child development. Cook Children’s volunteers will also be on hand to assist.

Everything for the Child

The Panda Cares Center of Hope Sibling Support Center is a therapeutic activity center full of everything for the child, from developmentally appropriate toys and sensory play items to arts and craft supplies. Each day Trussell and Siharath will offer child visitors a guided activity that sparks their imagination, creativity and conversation.

“Every day we'll have a different activity to do that will open up a new discussion for our sibling guests because, given their family’s situation, they might not get that opportunity outside of here, and we want to make sure they feel like they are the center of attention,” Siharath explained. “For example, we have an activity where kids can make a rainbow with colors based upon their feelings. We would ask them questions like, ‘What colors represent you?’ and ‘Which color represents your inside and outside feelings?’”

The questions are meant to help kids connect with other children who also have a sibling with a medical condition and may be experiencing similar emotions related to their brother or sister’s health.

“When we're all sitting around the table and these open-ended questions are being asked to help draw the child out and give them an opportunity to speak up, they'll get to hear other siblings say some things that they may not have felt like they could say out loud, and feelings that they’ve had regarding their sibling that is a patient,” Trussell said. “So that peer-to-peer support is an important piece that we want to emphasize here, too.”

Connecting the Dots for the Whole Family

Together with other Cook Children’s sibling support programs, The Panda Cares Center of Hope Sibling Support Center connects the dots of family-centered care at the health system. It’s an extension, Trussell says, of the work Child Life Services does to care for the mental and emotional health of the whole family through offerings like the Cook Children’s Sib2Sib Program™. Through weekend workshops, camps and family events, Sib2Sib gives patient siblings the opportunity to express themselves and their feelings, receive undivided adult attention, learn coping skills and connect with peers living in similar circumstances.

Sometimes a child will express fear or misunderstanding about their sibling’s health, treatment, or injury while visiting the Panda Cares Center of Hope Sibling Support Center or any of Cook Children’s sibling support programs. For example, if a child has experienced a pet being “put to sleep” they sometimes correlate that term with death, and may think their brother or sister is going to die because they are having a procedure where they will be put to sleep.

“When we hear those things we’ll be able to share that with their parents and connect all of them with a Child Life specialist that can help explain what the procedure is, what's really going to happen medically, and what all the terminology means in good, child-appropriate language that they understand,” Trussell said.

Together, all of these programs and services connect the dots of family-centered care at Cook Children’s.

The Panda Cares Center of Hope Sibling Support Center at Cook Children’s is made possible through the support of Panda Cares®, the philanthropic arm of the Asian dining concept Panda Express®, and its partnership with Children’s Miracle Network (CMN), of which Cook Children's is a member. Following a multimillion-dollar commitment to Children’s Miracle Network Hospitals to fund Panda Cares Centers of Hope, Panda and CMN Hospitals have debuted Center of Hope locations at several hospitals in the U.S. from California and Texas to Hawaii and Washington D.C.

The Panda Cares Center of Hope Sibling Support Center at Cook Children’s is open from 8 a.m. to 5 p.m. Monday through Friday to siblings, ages 3 to 11, of patients who have a clinic appointment. Children may attend the center for 90 minutes per visit. It is free to families. Reservations are not required but parents will be asked to complete a registration and consent form. 

By Ashley Pagenkopf, MS, CCLS, Child Life Specialist at Cook Children's

Family-centered care is a pillar of Child Life Services and holds high value within our Cook Children’s system. We must consider each person in a patient’s family.  The idea of family systems theory is that when one person is affected by a circumstance, the whole family is affected. Everyone feels the experience in some way.

Recently, my family had the opportunity to receive services from an organization that serves patients and families with ongoing health care needs. This organization sends a box each month for a year to the patient, but they also include items for the patient’s parents and siblings. The first box we received had T-shirts for all of us with individualized cards and small gifts. My girls each received an envelope from this organization full of Valentines from lots of people.

This organization connected us with another organization that provides birthday cakes for patients and their siblings. Each of my daughters received the most stunning cakes donated by local bakeries for their recent birthdays. Both of these organizations encompass the true meaning of family-centered care, by caring for the whole family.  

Child Life Specialists focus their care not only on the patients that we serve each day but also on the other children in their families. It may be siblings, cousins, best friends, or others. Whoever may be impacted by the experience of the patient should also be cared for and receive services. Often, Child Life Specialists will provide the assessment, preparation, support, education and play for siblings and other children within a patient’s support system.

The emotional safety of the whole family matters. We want to consider where each person finds themselves during the current experience. Family dynamics, past medical experiences and traumatic experiences, the family’s beliefs and more help child life specialists provide the best services to each family member. While the patient may be coping very well with their current circumstance, it is possible that a sibling or parent is having a very difficult time and their needs may be different than that of the patient.

Years ago, my youngest daughter was admitted to the NICU following her birth. At the time I had a 2-year-old and a 4-year-old at home. My oldest was allowed to come up and visit, meet and hold her newest sister, but my middle daughter was too young for the visitor guidelines in the NICU. We did everything we could to make that time better for everyone. The girls would come to the hospital and eat meals with me while I stayed at the hospital. We frequented Build-A-Bear and made the most of the indoor and outdoor playground.

When one family member has a medical crisis, the rest of the family juggles to handle it all. My middle daughter really struggled because, at the time, she was almost fully potty-trained, but this time caused her to regress.  She was so ready to meet her sister and have her mom back at home. She melted down at every good-bye and every greeting. This is the perfect circumstance for Child Life Specialists to help create some bridges for the family. We took pictures and shared them with her and told her exactly what her sister was experiencing. She drew pictures for her baby sister and helped build her a bear at Build-A-Bear. Each thing that we did, helped us acknowledge that she was a part of this family unit even when we couldn’t all be together.

Supporting caregivers, parents and siblings

In addition to the patient, we want to provide preparation and support to the caregivers and siblings of each family as well. We want everyone to understand the steps and reasons for the medical care we are providing. When the patient is getting an IV, it is important for the sibling observing to also know what is happening and receive some preparation and support around this procedure. When a family member visits the ICU for the first time, it is helpful for child life to prepare them for what they will see and hear in the unit.

It is also important for caregivers and siblings to be educated about new diagnoses and understand at the same level as the patient. Child Life Specialists can provide medical play and education to siblings or close family of a patient. Child Life Specialists can include siblings in debriefings of traumatic experiences and often in bereavement situations while helping them process what they may be feeling and experiencing.

We also want to provide normalization to the family as a unit, such as utilizing volunteer services while a caregiver attends a sports function for a sibling. We also provide developmentally appropriate play for siblings while they are visiting to make sure that activities are available not only to patients but to their siblings and families as well.

At Cook Children’s, we strive to provide family-centered care in all areas of the medical center. From sibling support groups to camps to parent mentors. We also have several ways that we support families and siblings.

Family Centered Care programs and resources at Cook Children's

 Family Centered Care at Cook Children's provides many programs, including the Parent Mentor Program, the Family Resource Library and our Parents as Partners program.

Our parent mentor program provides visits and phone calls to inpatient parents and caregivers to offer support and fellowship. Our Parents as Partners program includes our Family Advisory Councils that you will find throughout the medical center in different areas and departments. Involved families can help guide and direct our initiatives utilizing their own experiences. Parent support groups are also returning post-COVID. Cook Children's also has a new initiative for self-care for families.

We also have a whole program for siblings called Sib2Sib created by Child Life Specialists. This program provides so many opportunities for siblings and they are currently working on creating a website just for siblings. We have resources that include a sibling tour of the hospital led by Brie and Steve, two of our facility dogs. We also have information available for developmentally-based sibling needs. There is also the upcoming opening of a Sibling Support Center dedicated solely to the siblings that we serve every day. For questions about sibling services, you can contact Sib2Sib at sibprogram@cookchildrens.org.

Child Life Specialists advocate and strive to ensure the emotional safety of the entire family unit. These experiences touch each person in some way, and it is important to acknowledge each individual’s needs as well as the needs of the family unit. Cook Children’s is dedicated to providing family-centered care in every situation.

8 isn't enough ... life with 9 children

Nine children, ages 3 to 19 years old, make Mother’s Day a pretty special time for Kristy Goodnight. After all, that’s a lot of hugs and kisses to go around ... But when you consider each child has his or her own special needs, life can be amazingly hectic and difficult. And what’s the biggest challenge for the mom of nine? Click to read more.

Dr. Mom: How motherhood changed me as a pediatrician

After completing 24 years of schooling and medical training, you’d think that once I graduated from pediatric residency, I’d know a thing or two about the health of children. And I did. I knew a lot ... Then, I was blessed to have a beautiful son...who decided that I needed to be re-taught a few things about children.

And by a few things, I mean everything. Click to read more.

How being a mom shaped her practice

I am a better pediatrician because I have experienced life as a mom. I know the tears and tiredness of a new mom and so when she cries at the new baby check I can tell her it's normal and she believes me. Click to read more. Click to read more.