Hosted by Kat Quinn, BSW, MS and CF advocate
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1 Hosted by Kat Quinn, BSW, MS and CF advocate 2015
2 CFurther: Empowering Self Care From ayoung Age Meet our panel Cystic Fibrosis by the numbers DefineYourself Tess Dunn Think Big Siri Vaeth Dunn, MSW Make It Special Kat Quinn, BSW, MS Let the Child Lead Susanna A. McColley, M.D. Questions
3 Self Care will be important for your child Data from Cystic Fibrosis Foundation s 2013 Patient Registry Annual Data Report
4 Framework for staying on track INDIVIDUAL FAMILY COMMUNITY HEALTH CARE SYSTEM Age Family Structure Neighborhood Access to Care Gender Health Literacy Disease & Treatment Knowledge Mental Health/ Behavioral Problems Coping Style Health Beliefs & Perceptions Income/Health Insurance Disease & Treatment Knowledge Mental Health/ Behavioral Problems Coping Style Health Beliefs & Perceptions Relationship quality Work (Hours & Policies) Health-related accommodations at school Peer Support Illness Stigma Continuity of Care Patient-Provider Communication Shared Decision Making Frequency of Clinic Visits Provider Biases Involvement in care Source: Pediatric self-management: a framework for research, practice, and policy. Modi et al., Pediatrics 2012, e473-85
5 Tess Dunn Singer-Songwriter Advocate College Student
6 DefineYourself 1. There is NO real definition of normal Normal isn t the goal; it s to stay healthy 2. Live life, stay compliant 3. Learn to adapt There s so much to life; don t compromise your health because you re so excited to live it 4. Surround yourself with people who build you up
7 Siri Vaeth Dunn, MSW Mother Social Worker Programs & Outreach Manager at Cystic Fibrosis Research, Inc. (CFRI) Advocate
8 Think Big 1. Serve as a role model for advocacy CF is a part of who you are 2. Share your CF Care team Friends CF organizations 3. Establish routines Start from a young age Keep a pilot s checklist 4. Problem solve together Recognize patterns vs. outliers Acknowledge it s not fair Adjust to teen needs Hear, process and help guide them 5. Whenever possible, let them own the fun choices Adherence is non-negotiable Providing choices is KEY 6. Support their passions Instill hope and provide support with little acts of love
9 Kat Quinn Mom Social Worker CEO and Founder of Blooming Rose Foundation Advocate
10 Make It Special 1. Take time for togetherness Fight CF as a family Make treatment time special family time Exercise and eat well together 2. Remember knowledge is power Prepare to answer tough questions 3. Forging their own path Involve early in care team conversations Provide age-appropriate information Processing CF their own way 4. Make choice an option 5. H-E-L-P: a good 4-letter word Decide how you want your kids to see their disease because they will learn to see it as you see it
11 Susanna McColley, MD Pediatric Pulmonologist Professor CF Expert Mom
12 Let the Child Lead 1. Keep a healthy attitude Be aware of verbal and nonverbal messages Process your feelings 2. Follow their lead Take it one step at a time Check in, supervise and remind Partner with Care Team 3. Be patient with the process Understand developmental stages Be flexible, problem solve 4. Set reasonable expectations Avoid shame and blame Reward, not punish 5. Rely on your support systems Have open communication with your partner Know when and how to disclose Use Information Therapy Focus on routine, not perfection; remember developing habits takes time
13 Personalize your approach in 1. Learning how to take new treatments 2. Sibling relationships 3. School involvement 4. Hospital stays
14 Vacations: CF doesn t take a vacation; you shouldn t take a vacation from CF Work treatment time into travel time Plan ahead Work with your doctor Ensure you have what you need for your meds (refrigerator, power source, etc.) Modify treatment plan, if needed
15 Question #1 I have caught my 13-year-old occasionally being dishonest about whether he's done all of his meds. How can I get through to him, the importance of each med and how and why they help him? (And the consequences of not being compliant)
16 Question #2 What age do you think is a good age to begin "independence"? Suggested beginning steps?
17 Question #3 Do you think parents compliance with medications and treatments from a young age largely affects that child's compliance in their teenage & adult years?
18 Question #4 At what age do you start telling your children about CF and when to tell them the bad?
19 Question #5 I have a 12-year-old son with CF. I'd appreciate tips on getting him to take his medicine without prompting.
20 THANKYOU! Novartis Pharmaceuticals Corporation East Hanover, New Jersey Novartis 11/15 XCF
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