Family Consultant & Director of Family Collaboration for the LEND Program: Karen Tate
 |
Karen Tate |
When Karen Tate's daughter, Candace Garner, was 8 years old, she suffered a massive stroke on the school playground. Candace, with Karen at her side, spent three months in The Children's Hospital of Philadelphia (CHOP). Residual effects of the stroke include an uncontrollable movement disorder, weakness on the right side of her body, obsessive-compulsive disorder, and nerve palsy that interferes with some eye movement. Candace used a wheel chair for the first year following the stroke, and then began to walk without assistance.
Doctors discovered that an inoperable Arterial Venous Malformation (AVM) caused the stroke. They recommended a one-time radiation treatment to correct the malformation, which Candace had about five months after the stroke.
One year after the radiation treatment, Candace began having added symptoms such as difficulty swallowing and chewing, seizure-like episodes, and inability to walk. The doctors diagnosed radiation necrosis of the brain. In other words, because of the radiation treatment, Candace's brain tissue was dying. As far as the doctors knew, no treatment existed for the necrosis, a progressive and ultimately fatal condition.
Given such devastating news, and watching her daughter's health decline, Karen researched radiation necrosis and discovered a successful treatment option for other types of necrosis. Finally, after five months of persistent effort, Karen persuaded the medical providers to try hyperbaric oxygen therapy. Because the treatment was considered experimental for brain necrosis, payment authorization was most difficult. In large measure due to a letter written jointly by the therapists and social workers, the insurance company finally agreed to provide coverage for an initial trial of 20 days of treatment.
 |
Karen Tate with her children, Jordan, Candace, and Doreen |
Candace spent 3 hours a day, 6 days a week in the hyperbaric oxygen chamber. By the 12th day of therapy Candace was walking again!
Six months later, when a radiology oncologist expressed how impressed he was with Candace's improvement, Karen remarked how hard she had to fight to get the treatment for her daughter. The physician responded, "You weren't just fighting for Candace, [in the past six months] four other children have had the same treatment because of your efforts!" Karen then realized that the fruits of her labor to help Candace profoundly affected the lives of other children.
Karen began to advocate vigorously for all the children with disabilities. Early after Candace's first stroke, at the request of the hospital social worker, Karen spoke about her experiences to an interdisciplinary group, including physical, occupational, and speech therapists, an audiologist, psychologists, and developmental pediatric fellows.
Family Faculty. Karen was invited to join the volunteer Family Faculty-a group of former patients, their siblings, and their parents who teach the principles of family-centered care to hospital employees by telling their family stories. Family Faculty volunteers speak at the new employee orientation, to first year medical students at the University of Pennsylvania Medical School, and provide in-service training to physical and occupational therapists and other health care providers.
Additional Responsibilities at the Hospital. Over the next several years, Karen's role in The Children's Hospital of Philadelphia gradually grew:
- Volunteer Family Advisor. In the late 1990s, Karen became a volunteer member of the hospital's Family Advisory Council. The Council members include a Senior Vice President, the Director of Social Work, senior physicians, parents, and senior administrative and management staff from the hospital.
- Family Consultant. In 2000, Karen accepted a paid part-time position as a Family Consultant. Karen provides various types of support to families with children in the hospital. She meets with parents at the bedside, and documents her meetings in the chart, hosts coffee hours with families, and attends patient care conferences and family meetings called by the child's medical team. Karen's role includes education, advocacy, and assistance with communication issues between the families and the staff.
- Leadership of the Family Advisory Council. In 2004, Karen accepted the position of Chair of the Family Advisory Council. In 2005, John Mullen, a parent of a child receiving oncology treatment, joined Karen and together they served as the co-chairs until June 2006 when Amy Mariner and Tracey Board became the new co-chairs.
- Director of Family Collaboration for the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program. In 2001, Karen accepted the additional responsibilities of the Director of Family Collaboration for the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program, making her position full time. As Director, she ensures that fellows in this interdisciplinary leadership training program (with trainees and staff in audiology, dentistry, pediatrics, health care administration, nursing, nutrition, occupational therapy, physical therapy, psychology, social work, and speech and language pathology) participate in on-going programs with Family Faculty members, take electives that will further their education in family-centered care, and fulfill their requirement to provide resource materials to the Little Rock Family Resource Room, a center specially designed for those with visual and hearing impairments. (For more information, see below.)
- Family Fellow and Preceptor in the LEND Program. As part of a pilot program at the hospital, Karen completed a year of training as the first "family" fellow. Including a family fellow in the LEND Program-to represent the family perspective-changed the dynamics of the program. Karen now serves as the preceptor for new family fellows.
A Sampling of Projects. Karen has spearheaded many projects in her multiple positions at the hospital, some of which include:
- Now You're Home Project. The Philadelphia Department of Health funded Karen's grant application to help families with children with acquired brain injury to transition from the hospital to the home. Karen developed a script and survey designed to collect data within one year of discharge to help identify their needs. A focus group analyzed the survey results and developed workshops to help families with three specific issues. For example, organizing and managing the huge amount of medical information and paperwork is a major undertaking. Karen conducted a hands-on training session for families: supplying binders, dividers, highlighters, etc., as well as a volunteer to help each family set up their binders. Following the workshop, participating families reported being treated with more respect in medical and school appointments. As a result of this success, families-while still in the hospital-get binders and help from Karen or a social worker with this organizational task.
- Parents' Night Out. As a part of the hospital's 150th Celebration, the Family Advisory Council planned an evening social event for the parents of in-hospital patients. This adults-only event included catered food, linens, fine china, a live band, and child-care. There are plans to repeat this event four times a year.
- Little Rock Family Resource Room. Introduced in 2005 and funded by a donor family, this room provides resources for children and the families of children who are visually or hearing-impaired. It offers adaptive equipment and a variety of high-tech amenities that help children integrate into the community.
- E-mail system for communication between health care providers and families. The hospital's Information Systems Department and the Family Council are working to set up a secure E-mail system to facilitate communication between parents, physicians, and other health care providers.
 |
Little Rock Family Resource Room |
Quality Allies. Karen also serves as a faculty member for Quality Allies: Improving Care by Engaging Patients, a national program to strengthen the capacity of primary health care practices to improve the care, health, and lives of people with chronic conditions funded by the Robert Wood Johnson Foundation. Karen's involvement dates to the beginning of this project, shaping the educational programming and providing support for this project by:
- Participating in planning meetings and the ongoing dialogue about this national project;
- Coaching primary care teams that are designing, testing, refining, and broadening best practices in collaborative self-management support;
- Serving as a faculty member on twice monthly conference calls and face-to-face learning sessions; and
- Participating in the development of an online community to continue the initiative, and serving as Family Faculty for the New Health Partnerships Virtual Learning Community. See www.newhealthpartnerships.org
Karen's work not only has a positive impact on other families like hers; it also helped Karen face the challenges with her daughter, Candace. Working as a Family Consultant, as Director of the LEND Program, and on the Quality Allies project keeps Karen focused. She knows that-despite all the personal anguish concerning Candace's medical journey-a lot of good for others comes as a result.
Candace's medical condition continued to decline. Nine years after her stroke, in the face of increasing neurological symptoms, an MRI showed the Arterial Venous Malformation that the radiation therapy supposedly had corrected. More radiation was not an option because of the necrosis; and surgery was too risky to consider because the AVM was too close to the brain stem. Candace endured further strokes and as a result continued to have increasingly progressive physical and mental impairments that resulted in her death in May 2007, at the age of 18.
Karen attended Lehigh University studying fine arts. She now lives in Philadelphia with her son, Jordan and her older daughter, Doreen. Karen is an Adjunct Lecturer in the Physical Therapy Division of Arcadia University, teaching about the psychosocial aspects of life-limiting diseases to PhD students, and she serves as a member of and panelist for various organizations, including the Parent Advisory Group of the American Academy of Pediatrics Section on Home Care, The Pediatric Palliative and Hospice Care Task Force for the State of Pennsylvania, and the 2008 American Board of Internal Medicine Foundation Forum, "From Rhetoric to Reality: Achieving Patient-Centered Care". In Karen's free time she enjoys listening to music, watching movies, and working on craft projects.
To learn more about the LEND Program at Children's Hospital of Philadelphia, see http://www.chop.edu/consumer/jsp/division/generic.jsp?id=79426