The Online Newsletter for Children's Nurses
e-Edition, Issue 7
Family Centered CAREBy Linda Miranda, BSN, RN - Rheumatology
Childhood Arthritis and Rheumatic Disease Education (CARE) day camp is an annual event coordinated by the rheumatology nurses at Children’s Hospital Central California in collaboration with the rheumatologists, social workers, nutritionists, allied health staff, and patient and parent volunteers, in co-partnership with our local and state Arthritis Foundation. The goal of CARE is to create a culture of patient- and family-centered care, highlighting the role that families play in the care of patients, and their contributions to a patient’s overall health and well-being. According to the Institute for Patient- and Family-Centered Care, a group dedicated to advancing the understanding and practice of patient- and family-centered care, four core concepts are essential to this type of care: respect and dignity, information sharing, participation, and collaboration.1 Our CARE team has utilized these concepts to form a support health network for our patients and their families to enhance their understanding of their disease process and management to improve patient outcomes and safety.
Our CARE events and activities are centered on a theme. For example, this year’s theme was “Rockstar,” in which our patients were each given a specially made T-shirt to wear at the event to highlight them as unique individuals. We shuttled patients and their families by a limo-bus and rolled out a red carpet for them to walk on as they entered the CARE event. They were met with a standing ovation of applause by our rheumatology staff and volunteers to show them just how special they are to us. Makeup artists styled hair, applied makeup and painted nails for the girls. We also provided props, like wigs and inflatable instruments, for the children and their families to use while performing with a live band and DJ for the event. They sang and danced to their favorite tunes. It was a fun time for the whole family to enjoy.
We opened the event with a motivational speaker, Amye Leong, an advocate for arthritis who speaks publicly around the world to promote awareness about arthritis, inspire patients and work to move policy makers to provide better support for arthritis sufferers. The response was amazing. The children posed for their cameos in their Rockstar pictures, which were placed on display in our rheumatology clinic for them to see when they came to their clinic appointments. The kids marveled over how much fun they had and how they looked forward to the next CARE event. Some of the patients and parents asked if they could participate as a volunteer to help coordinate the next CARE event.
Some of our CARE events have included teen support groups, where nurses and teens join together in discussing the challenges of living with a chronic illness, the importance of medication compliance, and the consequences of poor compliance. Nursing has hosted activities specifically for the teens to provide a support system and mentorship opportunities between the newly diagnosed and those who have successfully managed their disease who act as role models. A support system for parents to connect with one another and discuss strategies and resources with our social worker and child psychologist regarding the care of their chronically ill child has also been provided at our CARE event.
At Children’s Hospital we realize how important it is to develop a working relationship with our patients and their families in providing quality patient care and improved outcomes. The Children’s Hospital Central California rheumatology department staff is dedicated to fostering a culture of family-centered care for the patients we care for.
In This Issue
A Walk On The Family Side
Patient Family Satisfaction
Family-Centered Medical Care
Nursing and Child Life
Pediatric Diabetes Care
Supporting Teens on Dialysis