Traveling Parent

I’ve been “involved” in the world of CF for over four years now. In that time I’ve assembled a broad range of experiences that have helped to shape and define what I believe my role should be in this journey. In addition to my “regular” duties as a primary caregiver, pharmacist, nurse, doctor, respiratory therapist and Mom, I have taken on the additional responsibility of being a (volunteer) “patient and family advocate” within the hospital and community settings. I believe that without continual input and observations from those using our medical systems, we cannot continue to make progress in the delivery of family centered care and quality medical management of chronic illness. This is never more apparent to me than now, specifically pertaining to the level of care within our Cystic Fibrosis Care Centers.

The Cystic Fibrosis Foundation accredits 115 CF Care Centers across the US. These Care Centers must meet some basic standard requirements and follow general guidelines prescribed by the Foundation to maintain their accreditation. However, the specific methodologies surrounding the actual delivery of care and standard treatment protocols vary widely from one Care Center to the next. While the Foundation has taken on the enormous task of compiling “best practices” out of some of the top care centers (as defined by FEV1 and BMI numbers, among other measurable variables), they have neglected to include the parent/patient perspective in their benchmarking process.

It is imperative that we continue to raise the bar for CF care within our care centers by not only implementing those practices proven effective within our “healthiest” (on paper*) care centers, but also by focusing on education, parent support, and promoting healthy living activities. I believe that we can increase our position among other CF Care Centers (with regard to the measurable variables used to rank each center) if we consistently offer ongoing support our families, give them the necessary tools to increase and/or maintain their adherence and help them make the appropriate choices in order to lead healthier lives. With the movement toward family centered care in full swing across the country, it is nearly considered irresponsible to address medical issues only without first considering the implications that those issues have on our social, financial, educational, personal and professional lives.

I recently attended a conference in Anaheim, California for the Learning and Leadership Collaborative (LLC V). It is a consortium of CF care centers that have dedicated themselves to standardizing their clinic processes to implement quality improvement initiatives. It was really an eye-opening experience to have an entire room full of staff, physicians and families working so diligently in so many different ways to bring new ideas and fresh perspectives to the table. This year-long commitment involves establishing a core group of key care team members, holding regular meetings, having conference calls with coaches who have been through the process before, and focusing on breaking down and re-establishing standard protocols for specific and global aims. It’s a fascinating process from which our team has certainly benefited. We are highly encouraged to interact with other care centers and “steal shamelessly” from them what works, as well as learn from their failures.

As a CF parent, it became increasingly obvious that the “little” things that I felt had an impact on the type of care we receive from our center were not even on the radar of the Care Team as being issues for families. Every aspect of each appointment ~ from the physical space we are required to use during check-in to the forms we need to fill out to having vitals taken ~ contributes to your perspective of whether or not you feel satisfied with the level of care you receive. As caregivers, we need to have consistency, feel as though all members of the Care Team can anticipate and meet our routine needs while also being able to handle any emergent or unanticipated issues, and know that we are being heard when we have something to say pertaining to the health of our loved ones.

From my involvement in the LLC group and my own desire to have a direct impact on quality care, I began to establish a plan to connect with other care centers on a parent/caregiver level. My thought is that by physically experiencing what a typical visit is like at other Care Centers from a parent/caregiver perspective and by meeting with the core group of volunteer/parent leadership, I would be able to discern a set of “best practices” from each location and compile them into a final report. Thus, I prepared a “Traveling Parent Proposal” and presented it to our CF Care Center LLC group, some members of the CFF, our hospital administration, among others. The response has been positive and the plans for my first site visit will be final this week.

I am excited to embark on this new adventure and will post a synopsis of my findings after each site visit.

*”on paper” refers to the fact that although certain care centers have numbers that look better than other places, this could largely be due to the demographics (and challenges) of the population being served in that specific area as well as their ability to maintain patients waiting for lung transplants, etc. All measurable variables are, in fact, variable!