Family Matters - Winter 2008
When the Family Advisory Council of the Children’s Cancer Hospital first met in April 2008, the council’s 12 parents and 12 staff members didn’t know what to expect. Now, eight months later, the members are entrenched in a variety of projects impacting the daily operations of the Children’s Cancer Hospital at M. D. Anderson Cancer Center.
New initiatives incorporating family-centered care show up everywhere – from the look of the Children’s Cancer Hospital Web site to the design of the new pediatric inpatient and outpatient spaces. Wherever you look, you’ll find the presence of families helping to shape the experience of care at the Children’s Cancer Hospital.
Cutting Down on Wait Times in Outpatient Clinic
In October, Leslie Christison, nurse manager of the outpatient clinic, needed a forum to discuss system concerns – patients were waiting too long for lab results, nurses were staying late in the evening to complete infusions, etc.
Christison met with the council and outlined her concerns, engaging staff and families in a focused discussion and problem-solving session. The families had numerous insights that staff had not previously considered. As a result of the council's suggestions, patients now have several opportunities to have their blood drawn the afternoon before their appointment, which helps alleviate some of the backup in the clinic.
The council has been an outlet to discuss many other care-related issues and ideas, such as complementary health programs for the pediatric population, patient gift bags and a new patient folder with important information.
Enhancing a Family's Experience with Supportive Care
Family-centered care has also spread to the new Supportive Care Program. While being treated at the Children’s Cancer Hospital, many patients need help to control symptoms and side affects that often accompany a diagnosis of cancer. In addition, they may also need comforting support for end-of-life care. The Children’s Cancer Hospital has been fortunate to engage the expertise of many families who have gone through this difficult experience and captured their creative ideas for the new program.
For two hours every month, families and staff gather to brainstorm best practices related to symptom control, communication, resources, end-of-life care and bereavement support. These brave families are building the cornerstones for the Supportive Care Program.
Planning a New Space for Pediatrics
Additionally, families and patients are asked to assist the council as expansion plans are developed for a newly renovated pediatric space within M. D. Anderson Cancer Center. Parents and patients will join engineers, architects and staff to rethink traditional approaches to design planning. Although this collaborative effort may be challenging, the experience confirms that patients and families bring a unique and invaluable perspective to the entire planning team.
Including families as full partners and utilizing their unique strengths and resources is helping the Children’s Cancer Hospital transform pediatric cancer care to a safer, more energized, efficient and satisfying experience for families, patients and staff.