Overview and Training Materials
You can make a difference!
While plenty of information is available about cleft lip and palate and other craniofacial conditions, getting that information out to those who need it...when they need it...can be a challenge. How many times have you thought, "I wish I had known about this website three years ago." Or, "If only I had someone to talk to after my baby was born...someone who understood what I was going through"?
The Pathfinder Program is designed to address these issues on a local basis and is overseen by the most important person on your child's cleft/craniofacial team...YOU!
We are NOT a traditional support group!
Support *groups* are often associated with a monthly meeting at a particular time and location, and perhaps a special event once or twice a year. But here at cleftAdvocate, we like the NETWORK approach much better (a good example is our Family-To-Family Connection)! We want folks to realize that when a question comes up on a Tuesday night or a Saturday afternoon, it's nice to be able to call a local buddy, or jump on-line and get a parent's point-of-view. Disclaimer
So when visualizing the Pathfinder Program,
think Support NETWORK, not support group!!!
cleftAdvocate will provide the tools you need to launch and maintain your outreach program. Training through LIVE teleconferences, website refresher courses and interaction with other Pathfinders will keep you up-to-date with all the latest Pathfinder goals and help to renew your motivation and perfect your skills as an outreach specialist.
A live Pathfinder Workshop is offered in conjunction with the North American Craniofacial Family Conference. See our Events page for dates. Training is also available at your location! Contact Debbie Oliver for more information.
For an overview of the Pathfinder Program, as well as tips and training on how launch a family outreach network in your area, join us for our next Pathfinder Training Webinar!
Second Tuesday of Every Month
1:00 PM Eastern
(10:00 AM Pacific)
Don't miss it. This will be a LIVE call! There is no charge to participate; however you are, of course, responsible for your own long distance charges.
cleftAdvocate will make accessible materials for you to distribute to families; however, since every region and cleft/craniofacial team has its own make-up and personality, we strongly suggest that you work with your clinic coordinator or other professional to put together appropriate materials. These may include materials from local agencies, your team or other support organizations. Your handouts may also change with each family, depending on the circumstances. Customize your Pathfinder packets to reflect the need of the family you are serving.
cleftAdvocate recognizes that it can be very difficult to find time for additional activities in busy family schedules. Remember that the Pathfinder Program is NOT designed to be maintained by one person! Just as your team relies on several professionals to bring you the services you need, area Pathfinders should work as a team.
With that said, let's begin!
What is a Pathfinder?
path·find·er , n.
(1) One that discovers a new course or way, especially through or into unexplored regions.
(2) One of a group of paratroopers who land ahead of a main force in order to mark the drop zone.
The Pathfinder program was developed to provide a first point of contact for new parents.
What does a Pathfinder do?
First and foremost, Pathfinders assist individuals and families on a one-to-one basis. Pathfinders sometimes develop local/regional networks; often they speak to medical and other professionals (including cleft/craniofacial teams, nursing students, civic groups and more) about the needs of patients and families. However, our network was built one Pathfinder at a time, and personal, one-to-one assistance is always the focus of our efforts.
Pathfinders often visit hospitals to deliver Pathfinder packets and congratulate the family, but more often than not, a phone call to parents of newborns is the first point of contact. A home visit may be arranged to drop off materials and/or feeding devices. Your first point of contact must be at the comfort level of the family. Some parents want to jump in right away and get all the information they need; others are more reluctant to talk to anyone outside the family.
A Pathfinder's main concern in this situation should be to establish if the newborn is receiving adequate nutrition, if the family needs cleft palate nursers, and to make sure that a cleft/craniofacial appointment has been made.
Support for Parents, Children, Teens and Adults
While most outreach programs focus on the needs of newborns and young children, cleftAdvocate focuses on support for a lifetime. We're expanding our teen and adult programs, but we need your help! Contact our program director at firstname.lastname@example.org and let us know you're interested in networking with others.
New Area Families
Moving to a new state or town is stressful enough. And getting established with the new cleft/craniofacial team can be a time-consuming challenge. What better way to take some of the pressure off new area families than to make a friendly phone call and hand over a packet of local information!
When a cleft is diagnosed in utero, an expectant mom and dad can go from the brightest, most promising day of their lives to a feeling of disappointment, fear and despair. A Pathfinder can make sure that parents get accurate information about cleft lip and palate and direct them to the cleft/craniofacial team for a consultation.
I don't have much time. Can I still be a Pathfinder?
Absolutely! Remember, this is a volunteer position! There is a great joy that comes with volunteering and giving of one's self to others. But at the same time, we all have lives to lead and jobs to go to and families who need our time, as well. The Pathfinder Program is designed specifically NOT to interfere with the important things in life!
What if there is already an established support network?
First of all, ask why you never knew about it! What good is a support network that nobody knows about! Team coordinators have an overwhelming job as it is, and often the responsibility of maintaining a support network falls on their shoulders, as well. Many coordinators are more than happy to hear from a parent volunteer...someone who is willing to take the bull by the horns and re-establish those important family connections.
If a framework has already been established, or if the foundation of the network needs a little work to re-launch, your team coordinator can plug you in with the right people. Bring your Pathfinder ideas to the table to assist your local outreach coordinator.
I would like to establish the Pathfinder Program in my area...what should I do?
Get your foot in the door.
One of the most important things to realize is that being a parent of a child with a cleft does not give you the credentials you need to establish a rapport with area hospitals and clinics. (You would think otherwise, wouldn't you?!) It is extremely important to work through the proper channels to launch your outreach program.
Your team coordinator can put you in touch with their established contacts...OB nurses, social workers in place at area hospitals, etc. If you do not feel comfortable approaching the coordinator, or your team is out of your immediate area, approach another trusted professional, like your plastic surgeon, speech therapist or pediatrician. It is much easier to approach a facility with the blessing of this professional than it is to walk in the front door and introduce yourself. Also, this will lend credibility to your cause, making your job a lot easier!
Ask you team coordinator or trusted professional for names of others who may be interested in becoming area Pathfinders.
Remember, this is not a one-parent job, particularly if you live in a large metropolitan area. Your coordinator or other professional will be able to suggest parents who might be willing to work with you as a Pathfinder. Sometimes the coordinator will touch base with these parents first, and determine whether they are interested in being a Pathfinder. Other times, they may simply pass your contact information along, with your permission, of course.
When making first contact with these potential Pathfinders, it is important to let them know that this is a volunteer position, that they can let you know how available they can be (e.g., I can make phone calls; I can make hospital or home visits; I am only available on weekends, etc.). Let them know that becoming a Pathfinder doesn't mean a daily or even weekly time commitment on their part. Explain that when the need arises, they would be called upon. Depending on the numbers of cleft/craniofacial births in your area, their call to action could be every few weeks or even every few months. Discuss these potential numbers with your team coordinator to get a feel for the demand on your Pathfinders' time.
During this call, make note of how their lives are touched by cleft lip/palate or craniofacial anomalies or other facial differences...you will soon realize that you are already conducting an outreach call! Many times you will hear "This is how I felt and I never want another parent to feel like that again" as they relate their story. Other times a parent will relate the wonderful experience they had during delivery and that they want to make sure other parents experience the same thing. Either way, you will know by the end of this call whether you have a Pathfinder on your hands!
Establish geographic areas, if needed.
This program is designed so that no one Pathfinder carries an undue burden, time- or travel-wise. There is no sense in driving 30 miles from home to make a 15-20 minute house or hospital call if there is a Pathfinder five miles away.
Make a list of area hospitals and ask your coordinator or other professional for enthusiastic potential Pathfinders in and around those areas. While some folks won't mind driving or making long-distance phone calls, others may not want to participate if they have to travel long distances or incur a lot of toll charges.
Consider the need for bilingual Pathfinders.
Ask your coordinator or other professional about the potential need for bilingual Pathfinders and the particular geographic areas involved. In some cultures, a child born with a cleft is seen as a curse, a result of the parents' past sins or a result of the phase of the moon...all myths, of course. It is important to know who your potential clients are and any cultural needs that should be addressed.
What are the established Pathfinder Responsibilities?
Pathfinders are responsible for finding and maintaining hospital administrative and other contacts.
Pathfinders responsible for initial hospital or home patient contacts and distribution of materials.
Pathfinders are responsible for making sure an initial clinic appointment is made.
Pathfinders are responsible for making sure an initial referral for feeding and nutrition counseling is made.
Pathfinders are responsible for providing a "buddy" contact or will become the "buddy" contact until a match can be made.
What materials should I include in a typical Pathfinder packet?
One word of caution...don't overwhelm new parents! Information is wonderful, but too much, too soon is not recommended. The most important things right now are:
Cleft Q&A Brochure
Cleft Palate Foundation
Foundation materials include feeding, surgery and genetics information
Information and possibly samples of proven cleft palate feeders and full instructions on care and use.
Contact information for your "buddy", a parent just like you who understands what you're going through.
How should I match "buddies"?
It is very important to consider how you are matching families within your local network. A parent whose child has already recovered from palate surgery would be a recommended buddy to the parents of a newborn. However, the parent of a two-year-old would probably not be a good buddy for a relocated family with a teenager with a cleft. While you should encourage interaction between all families in your network, when it comes to answering surgery or post-op questions, the buddy should have some first-hand experience with the issues the new family is facing.
Remind families that you and their buddy are not healthcare professionals, but can offer insight and guidance and above all...friendship! Disclaimer
What about meetings and special events?
Work with your team coordinator to set up special events such as holiday parties and educational conferences for your families. Work with area businesses to plan family days...how about a ball game or a movie?
The substance of the Pathfinder Program is found in the everyday interaction between families. But don't forget to add to the mix by planning fun and educational opportunities for everyone!
Register with us!
Make sure you are included in our national database by completing this short on-line form. You may choose to have your contact information included on our website, or perhaps you'll prefer that referrals made only through our office...just let us know!
You are not alone...
At cleftAdvocate, we're here to guide you every step of the way! Remember that a network begins with ONE individual, ONE family...and grows from there. Contact Debbie Oliver for more information on our teleconference training or for information on hosting a LIVE Pathfinder Outreach Workshop in your area!