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Patient and family advisors and leaders are critical to the success of an institution’s transition to and sustainability of patient- and family-centered care. There are a variety of ways that individuals can serve. The following is a list of some of these roles.

• Members of task forces
• Members of facility design committees
• Advisory board members
• Members of boards of trustees
• Participants in quality improvement initiatives
• Members of committees hiring new staff
• Participants in focus groups
• Paid program staff
• Mentors for other families
• Family to family support
• Advocates
• Reviewers of audio/visual and written resources
• Grant reviewers
• Participants in needs assessment process
• Program evaluators
• Participants at conferences and working meetings
• Group facilitators
• Co-trainers for preservice or inservice sessions
• Witnesses at hearings
• Fundraisers

Please share your experiences as a patient and family advisor with the Institute at institute@iffcc.org.

Juliette Schlucter

Juliette Schlucter is the mother of three children, two of whom have Cystic Fibrosis.

For the past ten years she has partnered with professionals at the at The Children's Hospital of Philadelphia to move forward family-centered care initiatives. In this role, Juliette has provided leadership for family programs, organized the training of family consultants, served as the liaison to the Family Advisory Council and advised hospital administrators on issues regarding family-centered care in relation to hospital policies and programs. Creating positive change in a variety of ways while dealing with the ongoing challenges of her children's health needs is indicative of her personal strength and commitment to promote family-centered change. Her advisory roles include both voluntary and paid staff positions, including some of the following: advocate, consultant, writer, trainer and fundraiser. She blends the dual perspectives of parent and professional with skill in these roles that help others develop strategies designed to further the vision and goals of family-centered care policies and initiatives.

1991

With her son's diagnosis, Juliette formed a relationship with a social worker at her child's hospital marking the beginning of many family/professional collaborative activities.

1992

Juliette joined the Cystic Fibrosis Parent Support Group and over a three year period served as chairperson of the group; co-wrote, edited, and published the group's newsletter; and coordinated social and fundraising events. This same year, she joined a public policy group known as "Parent Advocates for Children with Special Healthcare Needs." She provided testimony at a hearing in Washington, DC, before a Special Congressional Committee on Healthcare Reform chaired by First Lady Hillary Rodham Clinton.

1993

Juliette became interested in supporting families with children newly diagnosed as patients with cystic fibrosis, which led her to join the hospital's Peer-to-Peer Support Network. She continues as an active member of this network.

This same year Juliette was asked to participate with other families in the Executive Forum, a meeting where the hospital's CEO and other executive leaders have an opportunity to hear directly from families about the experience of care. The idea of creating a family resource center was introduced to executive management at this meeting.

1994

Juliette along with professional hospital staff co-founded the Family Faculty Program. This educational initiative brings the principles of family-centered care to doctors, nurses, and other health care professionals by creating a forum for families to share their personal stories and experiences.

1995

Juliette was asked and agreed to join the Bio-Ethics Committee of Children's Hospital.

1996

Through grant funding, Children's Hospital of Philadelphia welcomed Juliette on staff as the first paid professional family consultant. Juliette continued her visionary work and use of creative talents in launching the "Partners for Excellence Program." She designed this informational workshop to empower families, serving as a guide through the maze of intimidating challenges often associated with hospital care. Serving on staff as a Family Consultant, she provided direct family-to-family support to parents as well contributed to the planning of other family-centered care programs. Also, with the hospital Chief Executive Officer and the Vice President for Quality and Family Relations, she met with a local foundation to request funding for a resource center. As demand grew for more Partners for Excellence workshop sessions, the need for a parallel program for the patients and their siblings was identified. Juliette explored the idea of a "Junior Partners for Excellence Workshop" with a child life specialist. Subsequently, the child life specialist developed the material for Junior Partners.

1997

The generous support of a local foundation made the Connelly Resource Center for Families a reality. It took two years to design and build the resource center. This center opened in May of 1997.

1998

Juliette began serving as a faculty member at seminars sponsored by the Institute for Family-Centered Care.

2001

For several years, Juliette and other Family Faculty members have spoken at large class gatherings at the University of Pennsylvania Medical School. In 2001, The Academic Dean of the Medical School asked the Family Faculty to collaborate with them in creating a longitudinal course entitled, "Doctoring." Family-centered care is included in the curriculum, validating its importance to medical practice. Designed for first year medical students, the goals are to introduce the principles of family-centered care. Juliette provided leadership for this collaborative endeavor. She planned six concurrent sessions over a two-day period. Each session has 15 medical students and a family faculty member. Families share their family narratives about living with illness and then engage in informal dialogue with medical students about how to incorporate family-centered principles in their practice.

2002

In collaboration with families and professional at The Children's Hospitals of Philadelphia, Juliette and a multi-disciplined, family-centered care committee created key documents to support families as partners in the care experience including, guides to Patient Safety, Clinical Research Participation and Health Care Billing and Financial Issues.

2004

Leveraging the experience and value from creating the Connelly Family Resource Center in the In-Patient building, Juliette, along with hospital leadership and a multi-disciplined, ambulatory care committee, designed and opened The Children's Hospital Out-Patient Welcome Center. Designed as a center of caring for families on busy outpatient visits to the hospital, The Welcome Center has a concierge staff trained and ready to help families with special needs around accommodations, language and culture, way finding, and transportation. The center includes space for families to relax, find information through a family-support and resource database kiosk or connect to their personal/work lives using their own laptops or hospital supplied computer workstations.

2006

Juliette continues to consult at The Children's Hospital of Philadelphia, partnering with leadership to define the next level of supporting families and staff in their commitment to family-centered care. In January 2006, Juliette founded BRIDGEKEEPER, a consulting and training firm focused on supporting organizations in creating collaborative models of care between healthcare professionals and the patients and families they serve.

holly lu conant

holly lu conant rees is the mother of a young man with special needs. Her frequent interaction with her son's health care providers introduced her to the concept of family-centered care.

She has served in numerous advisory roles over the last 14 years. One of her main roles is serving as a Family Advisory Council (FAC) member. She is currently chair of the council. A FAC is a formal group of patients and families that meet to help influence policy and program decision making in health care settings. According to holly lu, the purpose of the FAC is to "promote, facilitate and support the provision of family-centered care and also ensure that the family perspective is considered at all levels of policy making." As a FAC member, her roles are to:

• Participate in monthly FAC meetings (two hours in length) with other family members, the hospital's administrative director, the child life director, and the director of planning.
• Serve on various hospital committees (i.e., hospital design committee), and share her perspectives as a family member.
• Participate in staff orientation by teaching staff members about family-centered principles of care.
• Help develop patient education materials (i.e., an in-room guide which describes important information about the hospital and the services offered, and a pre-admission guide).
• Help create materials that evaluate family-centered practices at the hospital (i.e., a family satisfaction survey).

For others serving in this role, holly lu encourages parents to connect with other families at the hospital or physician's office. Sharing stories is a wonderful coping mechanism, and instrument for broadening perspectives. It is a great educational tool and a way to provide support for other families.