Pathfinder Workshop


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Pathfinder Outreach Network workshop materials from the 2006 North American Craniofacial Family Conference (NACFC)

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Pathfinder Workshop

  1. 1. 2006 North American Craniofacial Family Conference Alexis Park Resort July 23, 2006 Pathfinder Outreach Workshop
  2. 2. Close your eyes….
  3. 3. Why are we here? <ul><li>Share our experiences </li></ul><ul><li>Drive to help others </li></ul><ul><li>Desire to educate </li></ul><ul><li>Personal fulfillment </li></ul><ul><li>Seeking healing </li></ul>
  4. 4. What we hear most... <ul><li>They left the hospital without knowing how to feed their baby. </li></ul><ul><li>They were not aware there was a cleft/craniofacial team or other specialists in their area. </li></ul><ul><li>They didn’t know what to ask their physician or team on their initial consultation. </li></ul><ul><li>They didn’t understand what their physician or team told them regarding treatment and surgery. </li></ul><ul><li>No one directed them to community services they might utilize. </li></ul><ul><li>No one told them where to go for peer support. </li></ul><ul><li>They feel alone. </li></ul>
  5. 5. What is a Pathfinder? <ul><li>One that discovers a new course or way, especially through or into unexplored regions. </li></ul><ul><li>One of a group of paratroopers who land ahead of a main force in order to mark the drop zone. </li></ul>
  6. 6. The Pathfinder Program <ul><li>A system of networking individuals and families to provide support, information, referrals and social opportunities. </li></ul>
  7. 7. Pathfinder Goals <ul><li>The Pathfinder goal is to bridge real and perceived gaps between families, medical professionals and service providers. </li></ul>
  8. 8. Pathfinder Responsibilities <ul><li>Establish and maintain physician, team, hospital, family and/or other support contacts. </li></ul><ul><li>Provide pertinent information to families and professionals. </li></ul><ul><li>Stress the importance of interdisciplinary team care, as well as patient- and family-centered care. </li></ul><ul><li>Make certain feeding issues are addressed immediately. </li></ul><ul><li>Provide a support network “buddy” contact. </li></ul>
  9. 9. Understanding your role… <ul><li>Peer counselor </li></ul><ul><ul><li>You are NOT a doctor! </li></ul></ul><ul><li>Advocate </li></ul><ul><ul><li>Provide a roadmap </li></ul></ul><ul><li>Confidante </li></ul><ul><ul><li>Provide an atmosphere of trust </li></ul></ul><ul><li>Our Code of Ethics </li></ul>
  10. 10. What you need… <ul><li>Skills </li></ul><ul><ul><li>Desire to help others </li></ul></ul><ul><ul><li>Ability to really listen </li></ul></ul><ul><ul><li>Ability to follow through </li></ul></ul><ul><li>Resources </li></ul><ul><ul><li>cleft Advocate website and FTFC </li></ul></ul><ul><ul><li>AboutFace newsletter and networking database </li></ul></ul><ul><ul><li>CPF publications and ACPA team database </li></ul></ul><ul><ul><li>Pathfinder Partner Organizations </li></ul></ul><ul><ul><li>Many others! Let’s name them... </li></ul></ul>
  11. 11. Roadblocks to Outreach… <ul><li>Emotions </li></ul><ul><ul><li>Grief </li></ul></ul><ul><ul><li>Fear </li></ul></ul><ul><ul><li>Guilt </li></ul></ul><ul><ul><li>Shame </li></ul></ul><ul><ul><li>Blame </li></ul></ul><ul><li>Time </li></ul><ul><ul><li>Family </li></ul></ul><ul><ul><li>Career </li></ul></ul><ul><ul><li>Extra-curricular activities </li></ul></ul><ul><ul><li>Volunteerism </li></ul></ul><ul><ul><li>Procrastination </li></ul></ul><ul><li>What is the key to overcoming these roadblocks? </li></ul>
  12. 12. The Solution... <ul><li>Education </li></ul><ul><li>Inspiration </li></ul><ul><li>YOU! </li></ul>The Pathfinder Outreach Network
  13. 13. Getting started… <ul><li>Become a Pathfinder! </li></ul><ul><ul><li>Training and materials </li></ul></ul><ul><ul><li>National database </li></ul></ul><ul><ul><ul><li>Pathfinder Partner Organizations </li></ul></ul></ul><ul><ul><ul><li>Website, phone and e-mail availability </li></ul></ul></ul><ul><ul><li>Support of other Pathfinders </li></ul></ul><ul><ul><ul><li>Networking potential </li></ul></ul></ul><ul><ul><ul><li>A wealth of knowledge! </li></ul></ul></ul>
  14. 14. Types of Outreach <ul><li>One-to-one family support </li></ul><ul><li>Formal support organizations </li></ul><ul><li>Informal support networks </li></ul><ul><li>Educational opportunities for professionals </li></ul>
  15. 15. One-to-one Family Support <ul><li>The basis of all outreach! </li></ul><ul><li>Most often occasional and informal </li></ul><ul><li>“Call me if you need me…” </li></ul>Do not minimize the effectiveness of one-to-one support as this is how all networks begin!
  16. 16. Reaching Out… <ul><li>Gather resources </li></ul><ul><ul><li>Don’t reinvent the wheel! </li></ul></ul><ul><li>Contact your team </li></ul><ul><ul><li>Develop an outline suited to local needs </li></ul></ul><ul><li>Contacting potential Pathfinders </li></ul><ul><ul><li>HIPAA </li></ul></ul><ul><li>Consider geography </li></ul><ul><li>Make in-hospital and other contacts </li></ul><ul><ul><li>Social workers, administrators, nurses </li></ul></ul><ul><ul><li>Early Intervention services, ultrasound labs, pediatricians </li></ul></ul>
  17. 17. Pathfinder Packets <ul><li>Warm welcome and/or congratulations </li></ul><ul><li>Your Pathfinder contact information </li></ul><ul><li>Feeding information* </li></ul><ul><li>AF USA, cleft Advocate and other relevant handouts </li></ul><ul><ul><li>Pathfinder Partner Organizations </li></ul></ul><ul><ul><ul><li>Contact information, relevant websites </li></ul></ul></ul><ul><li>ACPA Team information </li></ul><ul><li>Local resources </li></ul><ul><li>Buddy contact* </li></ul>
  18. 18. The Buddy System <ul><li>How to match a buddy </li></ul><ul><ul><li>What does the family need?? </li></ul></ul><ul><ul><li>Consider the condition </li></ul></ul><ul><ul><li>Consider the age of the patient </li></ul></ul><ul><ul><li>Consider the comfort level of the family </li></ul></ul>Utilize the Pathfinder Database!
  19. 19. Newborn Outreach <ul><li>The original Pathfinder Program! </li></ul><ul><ul><li>Hospitals and homes </li></ul></ul><ul><ul><li>Telephone and e-mail </li></ul></ul><ul><ul><li>Word-of-mouth </li></ul></ul><ul><li>Quickly expanded to outreach for all ages and for all facial differences </li></ul>
  20. 20. Beyond the Newborn... <ul><li>What is a “new” family? </li></ul><ul><ul><li>Expectant parents or parents of newborns </li></ul></ul><ul><ul><li>Persons surviving trauma, disease, illness </li></ul></ul><ul><ul><li>Upcoming treatment or surgery </li></ul></ul><ul><ul><li>New to the area </li></ul></ul><ul><ul><li>New to the team </li></ul></ul><ul><ul><li>Adults and teens facing new challenges </li></ul></ul>
  21. 21. Types of Outreach <ul><li>One-to-one family support </li></ul><ul><li>Formal support organizations </li></ul><ul><li>Informal support networks </li></ul><ul><li>Educational opportunities for professionals </li></ul>
  22. 22. Informal Organizations <ul><li>Personal, e-mail and telephone contact </li></ul><ul><li>Listservs </li></ul><ul><li>Play dates </li></ul><ul><li>Picnics, holiday parties </li></ul>One-to-one outreach rises to a new level when several families come together!
  23. 23. Formal Organizations <ul><li>Non-profit corporation </li></ul><ul><ul><li>Charter, by-laws, secretary of state filing, IRS filing </li></ul></ul><ul><ul><li>Sometimes associated with a particular hospital or team </li></ul></ul><ul><li>Events </li></ul><ul><ul><li>Meetings, field trips, conferences </li></ul></ul><ul><li>Fundraising – 501(c)3 </li></ul><ul><ul><li>Grants and sponsorships </li></ul></ul><ul><ul><li>Dinners, silent auctions, appeals to membership </li></ul></ul><ul><li>Administrative requirements </li></ul><ul><ul><li>Added responsibility of incorporating as a non-profit corporation sometimes takes the focus away from the original mission of the organization. </li></ul></ul>
  24. 24. Professional Education <ul><li>Birthing hospitals and medical centers </li></ul><ul><li>Pediatricians </li></ul><ul><li>Dentists and Orthodontists </li></ul><ul><li>Speech/Language Pathologists </li></ul><ul><li>Ultrasound facilities </li></ul><ul><li>Neighborhood Partners in Care (NPIC) </li></ul><ul><li>Early Intervention Teams </li></ul><ul><li>Medical, dental and nursing schools </li></ul><ul><li>Public and private schools at all levels </li></ul>
  25. 25. When we come back… <ul><li>We will break into focus groups... </li></ul><ul><li>What kind of Pathfinder are you, or what kind of Pathfinder do you want to be? </li></ul>
  26. 26. Focus Group Reports <ul><li>One-to-one family support </li></ul><ul><li>Informal support networks </li></ul><ul><li>Formal organizations </li></ul><ul><li>Professional education </li></ul>
  27. 27. A final thought…
  28. 28. 2006 North American Craniofacial Family Conference Alexis Park Resort July 23, 2006 Pathfinder Outreach Workshop