1. EDUCATING FAMILIES WITH CHRONIC DISEASE Joanne Douthit RN MN CNS CPN College of Nursing University of Arizona Pediatric Pulmonary Center

2. Objectives Recognize role of chronic disease in health care Discuss role of interdisciplinary care Identify components of educational process –Developmental issues –Teaching methods –Learning styles –Barriers to learning

3. Chronic Disease Dominant health problem Principal cause of disability Consumes 78% of health expenditures Significant transformation of role of patient

4. Acute vs Chronic Disease Episodic Passive role of patient Usually cure Returns to normal Continuous Patient is experienced Rare cure Behavioral changes to prevent worsening of disease

5. Chronic Disease Multiple facets of disease –Social concerns –Financial fears –Lower self esteem –Depression

6. Management Best provided by coordinated team of health care professionals Interdisciplinary care Individual discipline members provide service

7. Management Patient involvement with multiple professionals/physicians Continuity/integration of care critical Specialists must understand overall plan

8. Role of Patient in Chronic Disease Must adapt to ongoing therapy Involves change in behaviors Adjust to consequences of disease Patient becomes a principal caretaker

9. Role of Health Care Professionals Provide Education! –About disease –Treatment –Prognosis –Interpret symptoms –Understand medications –Manage symptoms –Cope with emotions –Communication skills

10. Role of Health Care Professionals Skills –Medication delivery Spacer devices Nebulizer use Peak flow meters Asthma action plan

12. Developmental Stages Toddler (1 to 3 years) –Curious –Eager to learn new skills –Understands simple connection between ideas –Likes to mimic others

13. Developmental Stage Elementary School Age (6 to 12 years) –More complex thought processes –Developing confidence –Has a need to achieve and succeed –Friends and school are important

14. Developmental Stages Adolescents (13 to 18 years) –Peer influences –Separation from family –Development of personal identity –Rapid physical and sexual changes –Denial and immortality

15. Teaching Methods Games Videos/CD/interactive computer Role playing Visual demonstration Return demonstration Written materials

16. Learning Styles Visual –Must see skill demonstrated –Supplement with written material Auditory Hear explanation of skill Kinesthetic Hands on experience

17. Family Education is NOT Didactic Lists of “should do” Lecturing Waiting for request for help

18. Teaching Should Involve: Respect for patient Understanding of patient’s beliefs Co-mangement – agree on goals Demonstration/return demonstration of skills

19. Teaching Should Involve (cont’d) Keep it simple –Educate in increments –Involve all aspects of learning styles –Visual, Auditory, Kinesthetic –Repitition Repitition Repitition!!! –Reinforce

20. Barriers to Learning Lack of knowledge or skills –Educational level Lack of understanding –Long term consequences of uncontrolled disease Poor communication between professionals and family Lack of support friends,family,community, professionals

21. Barriers to Learning (cont’d) Differences in Health Beliefs –Cultural –Religious Cost

22. Summary Paradigm shift of responsibility towards the patient as primary caretaker Understanding of developmental levels and learning styles necessary to develop educational methods Identification of barriers to learning critical to success

23. THANK YOU!!