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Living with CF

Family Centered Care

The Rutgers Robert Wood Johnson Cystic Fibrosis Center is committed to patient and family centered care. Our pediatric and adult teams work closely with one another and with our families to make sure that the care in clinic and in the hospital is always improving to meet your needs. In order to assure that we remained focused on empowering patients and families and providing sensitive and wholistic care, we have implemented several programs:

1- Family Advisory Council - This council is central to our efforts to remain patient and family centered and is comprised of family members from both the pediatric and adult programs as well as staff from both programs. The council meets several times per year and is involved in planning new outreach programs for families, communication strategies, family education day, etc. This group is also instrumental in providing feedback about the quality of care in clinic and in the hospital.  Membership on this council is always open and we welcome new ideas. Members can participate in person or via conference call. In the last year, the council has focused on several priorities:

  • Family Resource Website – This guide, originally envisioned as a book to give to patients and families, has expanded to the development of an entire website dedicated to our CF center and families.  This is a comprehensive guide to our CF center and the hospital, both pediatric and adult.  The most important aspect of this project is that families have been involved in the development from the beginning and are an integral part of the project. 
  • Center Newsletter/EBlast – This Eblast is managed entirely by the Family Advisory Council with contributions from the staff at both programs.  The first edition of the newsletter was released in May 2012.  The purpose is to keep families involved in the center and up to date on anything new in the CF community.
  • Family to Family Support Network - This is an informal network at this time which provides support to families of CF patients at challenging times in their lives.     Matches are made by the center staff and only with permission from both parties.  The staff at the center has already paired family members or patients within the center who express a need for additional support.
  • EPal program – This program was launched in early spring, 2012.  The intent of this program is to give our patients and siblings someone “like them” to talk to, with the approval and supervision of their parents.  The center staff assist in making the  connection but has no involvement in the relationship beyond that point.

2- The CF center has also developed a patient satisfaction survey.  Information from the survey is used to improve care. 

3- The social worker regularly uses an email network with willing families to keep you updated quickly on changes, new information, etc.  This email network has made communication much easier and has helped families feel more connected to their center and new information that comes from the foundation and other sources.   

4- In 2013, the CF team  started our own CF walk in New Brunswick with the help of the NJ Chapter of the CF Foundation.  This was the first walk for the New Brunswick location and raised over $30,000 in its first year.  In its second year, the walk moved to Edison and raised $52,000. We hope this walk will grow with every passing year and will include as many families from this center as possible.

5- The CF Center holds Family Education Day once per year.  All the members of the CF team from both the pediatric and adult program attend the meeting.    This day is usually full of updates for families on activities at our center as well as research and other programs sponsored by the CF Foundation. We always welcome a keynote speaker and the afternoon is full of small group discussions, where family members get the chance to meet one another and talk about life with CF. Many families find this a rewarding part of the day.