Family-Centered Care: In Our Families' Words

Each of these stories helps to illustrate a patient- and family-centered care practice principle.

Family participation

Principle: Staff respects and supports a family’s desire to participate in the care of their child at the level they choose or are able.

"During a procedure that required inserting an IV into our son's head, a nurse noticed how difficult it was for me to watch and be there. I felt as though in order to be a 'good mother,' I needed to stay in the Procedure Room with Jonathan.

The nurse told me I could leave for a few minutes until the IV was in, and then I could return to hold and comfort my son.

I could not have left without her encouragement, but it actually was the best thing for me and for Jonathan, and I thank her to this day for recognizing my pain and my limitation."

— Grace Kane, family faculty

Designing a plan of care

Principle: Staff collaborates with family members to advocate and design a plan of care in the best interest of the child.

"Several months after my daughter's first stroke an IEP (educational plan) meeting was planned to adapt her school program because of changes in her physical and cognitive abilities.

Her speech therapist from CHOP attended the meeting, and when told that speech therapy three times per week wouldn't fit into the school therapist's schedule she stated, 'But this is about what Candace needs!'

That was when I realized that it was not acceptable to just settle for what was offered to my daughter, but rather to advocate for what she needed to give her the quality of life that she deserved."

— Karen Tate, family consultant

Developmentally appropriate resources

Principle: Staff provides developmentally appropriate resources for children with special healthcare needs.

"In a recent admission I rushed Teddy to the Emergency Room, not having very much time to pack anything comforting for his hospital room. After a few days, Teddy's condition stabilized. A Child Life worker came into his room and asked me what kind of things made him happy. I said that he was limited in his ability to play with toys because Teddy was so weak. I told her he loves Sesame Street.

She left the room and returned back to his room shortly. In her hand was a Sesame Street pillow case for Teddy. It lit up his face and touched my heart.

I later learned that a Mom of an oncology patient started the organization that makes these pillow cases for all of CHOP's patients. It was a small act of kindness that meant so much and something we will always remember."

— Laura Bedrossian, family consultant

Compassion and support

Principle: Staff make a difference by providing compassion and support to children, adolescents and their families in healthcare delivery.

"There was a unit clerk on the PICU who would bring a smile to my daughter's face each morning by greeting her through the intercom, saying, 'Good morning Jennifer. I hope you have a good day today!'

— Tracy Board, co-chair, Family Advisory Council

"Many behind-the-scenes staff have had such an impact on my daughter’s experiences at CHOP. My daughter’s phlebotomist, Edam, has worked with her over the years during monthly lab draws to ease anxiety and alleviate stress. She is always very upbeat and has a unique way of distracting her.

And Alma, the cashier in the cafeteria, always asks for my daughter and she makes a fuss over her when she sees her."

— Jennifer Loftus, parent

Flexible, accessible, responsive care

Principle: Staff provides a commitment to healthcare delivery that is flexible, accessible and responsive to family needs.

"Shortly after our son's diagnosis, we began having some issues with our insurance coverage. We are covered by an HMO so we were puzzled as to why there would be any financial issues.

We were introduced to a staff person at CHOP whose job it was to handle insurance problems for the oncology unit. She was very sympathetic and understanding to our stress level. She took the whole burden off our hands and contacted the insurance company on our behalf.

It was a great relief to not have that worry on top of everything else — and another great benefit provided by CHOP to serve families."

— Dan Effron, family faculty

Respecting coping styles

Principle: Healthcare professionals respect the different styles of coping with stress and offer expertise and support to families.

"I was at the hospital with my daughter in the ICU. She was extremely critical, and the best case scenario meant that it was going to continue like this for some time. As my adrenaline was wearing thin, I was getting overwhelmed, not sleeping, and not taking care of myself. I couldn't stop my brain from spinning about what the future might hold. I couldn't even imagine how I was going to make it until the next day, let alone next week.

My social worker clearly saw that I was not doing well, and sat down with me to talk. After a few minutes she warned me that she was going to give me some very clichéd advice ... and she said 'Take it one day at a time'.  It WAS such a cliché ... but it connected with me. We talked some more, and decided that the best time-frame for me to function was between my daughter's every-three-hour blood gas tests. So that's how I functioned for a long time ... I knew what I was doing for three hours at a time. It took practice, for sure, but it made my days more manageable, and I was able to participate more fully with our team.

Even today, with my daughter's developmental disability, I work hard to only 'take on' the things that are in front of us … the things we can control. I'm very grateful that this amazing social worker both noticed the difficulty I was having, and offered sage advice that's made such an enormous difference."

— Amy Martiner, family consultant in the N/IICU

Sharing information

Principle: Healthcare professionals share information in ways that are supportive, empowering and affirming for families.

"When my son Aidan, was diagnosed with Von Willebrands disease, a blood clotting disorder, I was empowered and embraced by an angel. That angel was Dr. Travis from CHOP’s Voorhees Specialty Care Center. Dr. Travis recognized my need to be educated regarding Aidan’s plan of care. Dr. Travis and her staff introduced my family to the National Hemophilia Foundation (NHF), an organization supporting families with bleeding disorders.

Through this partnership, I have become educated, empowered and connected to a new community of other families sharing our experience. The education we received was not just for my son’s health but for my own, as I too suffer from the same disease. Our lives are substantially different because of the dedication we received from Dr. Travis, her staff, and the NHF (our angels)!"

— Beth Lohne, family faculty

Originally posted: June 2009
Updated: November 2013