Limited Literacy and Chronic Disease Management

1. Limited Literacy and Chronic Disease Management Judy King PhD, Physiotherapist Assistant Professor Physiotherapy Program School of Rehabilitation Sciences Faculty of Health Sciences University of Ottawa jking@uotttawa.ca Canadian Respiratory Conference April 29, 2011

3. Learning Objectives Following the presentation participants will be able to • Describe how limited literacy impacts on chronic disease management • Identify the barriers faced by patients living with limited literacy and chronic illnesses in receiving chronic disease management interventions • Identify specific strategies to reduce some of these barriers in their own practice

4. My Grandfather- WWI

5. Chronic Disease Management • Diagnosis • Self-Assessment • Self-Treatment • Learning to interpret changes in disease over a life time • Goal to Improve Quality of Life

6. Chronic Disease Managment • Knowledge- know the triggers for your asthma • Skills- learn how to use a bronchodilator • Behaviours- stop smoking, increase exercising

7. Living with a Chronic Disease We expect patients to • Interact with multiple health care providers and health care facilities • Coordinate appointment schedules • Finding their way in health care facilities (signage) • Understand and assess information from a variety of different sources • Follow complex chronic disease management program • Plan and make changes to their lifestyle • Make informed choices and decisions • Being aware of and understanding how to access care when they need it. (Institute of Health Improvement, 2008)

8. Living with a Chronic Disease • Affects learning due to • Pain • Medications • Fatigue • Decreased oxygen levels, increased CO2 • Age • Stress • Disabilities as a result of the chronic condition • Previous health care experiences • Changes from family caregiver to being taken care of ( Osborne, 2006)

9. Health Literacy Health literacy is the degree to which people are able to access, understand, appraise and communicate information to engage with the demands of different health contexts in order to promote and maintain good health across the life-course. (Kwan, Frankish and Rootman, 2006) These are the same skills needed for chronic disease self-management.

10. Literacy in Health Care Practice • “In health care, the problem is not just that people are expected to read materials. They are also expected to comprehend and absorb the message and apply that comprehension in day-to-day living by modifying their behaviour.” (Terry Davis et al. June,1996 Arch Int Med)

11. Literacy in Health Care Practice • Health Promotion and Prevention material • Appointment schedules • Navigating the hospital/clinic/community agency • Pre-assessment forms • Consent forms • Medication instructions • Patient education materials • Equipment instructions • Dietary plans • Insurance forms

12. Living with Limited Literacy • Reduced use of preventive health services (Scott et al. 2002) • Not seeking medical attention (Baker et al. 1993) • Increased hospitalizations (Baker et al. 2002) • Misinterpret medication instructions (Williams et al. 1995)

13. Common Themes from Canadian Literacy and Health Research Projects • Powerlessness- shame, stigma • Different Roles and Relationships-family/children • Mixed expectations-between HCP and Patients • Living Between Worlds- Isolation • Language and Health Care Interactions- “blame the victim” “ hard to reach” • (Brez, 1997,Shohet, 2001,2002,2004 Gillis, 2004, King, 2007,2010)

14. Living with Limited Literacy and Lung Health Problems • Misinterpret asthma medication instructions (Williams et al. 1995) • Worse quality of life, physical function and more emergency room visits for asthma (Mancuso, 2006) • Reduced knowledge about asthma and self-management (Mancuso et al 2006) • Experiences of being powerless in dealing with health care providers and not being believed (King, 2007)

15. Barriers to Prevention and Self-Care for People with Limited Literacy and Chronic Diseases (Chiarelli, CPHA, 2006) • Health information is not presented in a way they can understand • Difficulty navigating the system and knowing what options are available • Limited basic knowledge and skills for prevention and self-care • Understanding how the body works, the condition and the treatment • Difficulty advocating for themselves in the health system • Practical supports for healthy lifestyle or self-care may be unavailable or inaccessible • Language and cultural barriers to prevention and self-care are present

16. Barriers in Chronic Disease Management • In matters of print: Researchers have found significant gaps between the readability of patient education material and the literacy levels of patients (Merriam et al. 2002) • In matters of speech: People with low literacy skills have problems with verbal explanations. Often, they will not ask questions to hide their lack of understanding. (Parikh,1996)

17. What is it like to have limited literacy? • Your naicisyhp has dednemmocer that you have a ypocsonoloc. A ypocsonoloc is a test for noloc recnac. You must drink a laiceps diuqil the thgin erofeb the noitanimaxe to naelc out your noloc.

18. Module 1 Having a Test- but what kind? • What kind of test are you having? • A colonoscopy • What do you have to do the night before the test? • Drink a special liquid AMA Foundation www.ama-assn.org

19. Living with Limited Literacy • Limited literacy does not mean limited intelligence or motivation. • People often do not receive information in a way that is easily understood. • Patients may be too embarrassed, stressed or overwhelmed to ask health care providers for further explanations

20. Taking Medications • Rx Dr. Smith Med Name Take one teaspoon 4 times daily by mouth --------------------------------- • Does everyone know what a teaspoon is? • Do people use different spoons with different volume amounts each time? • What does 4 times a day mean, every 6 hours? From Dr. Rima Rudd, Harvard University

21. Is this safe for someone on a salt-free diet? • We rarely say “ Pass the Sodium” From Dr. Rima Rudd • Harvard University

22. Barriers in Verbal Interactions -Power and Control • Medical authority- “God-like” • Power of information • Information experts (Bakker et al, 2001) • Power to heal • Imbalance of power • Physical • Emotional • The Locus of Control is with the health care professional who usually controls all the components of the health care interaction (time, place, content)

23. Barriers in Verbal Interactions -Vocabulary • Specialized language used in health care, often times excludes people • Medical Terms • Abbreviations • Jargon • If a test result is positive is that good or bad?? • “the patient will be transferred to the floor” • The asthmatic, versus the person living with asthma (Client-Centred)

24. Information Gathering by Health Care Providers • Health care providers need to “encourage patients to tell their stories instead of imposing the medical plot of illness” to get a true sense of the patients condition and concerns (Clark and Mishler, 1992). • Remember that patients may be “silenced by the disease, muted by treatment and stunned by shock and pain” during an interview (Morse, 2002) • Researchers have found that patients talk for only 22 seconds before being interrupted (Langewitz et al, 2002). • We will often interrupt patients to “get them back on track”

25. Kevin Pope- Artist Marcel Schurman Collection Cards www.schurman.com

26. The meaning of patient education experiences for adults with limited literacy and chronic illnesses (King, 2010) Themes • Different roles and relationships • Language and health care interactions • Living Between Worlds • Mismatched expectations • Feelings of Powerlessness

28. Different Roles and Relationships • “The role or job of the health care professionals is to teach and explain your disease and give you advice on how to change your life”- Nyela • Role of the Health Care Professionals • Roles and Relationships of Family • Self Responsibility for Health

29. Language and Health Care Interactions • “It’s health so the person has to know what she and he is signing or listening to, so I think it is very important”. Lynn • Verbal and Written Information • Vocabulary • English as a Second Language

30. Living Between Worlds • “everyone is different, everybody’s condition is different, so you can only tell your own story” – Ramon • Engagement in Society • Overcoming Adversity • Living in Isolation

31. Mismatched Expectations • “Sometimes just they don't treat you until they decide they are going to treat you, they are putting you to a lesson, they sit you there and wait, you wait, wait, wait and they say, “Are you feeling better now?’ - Sonia • Respect • Patient Education • Time

32. Feelings of Powerlessness • “In my opinion, if you can’t read and write you are treated differently, how do I put it, you’re a subclass, you are inferior” – Mekal • Fear of Exposure • Obligation to Follow Advice • Establishing Trust

33. Sources of Patient Education Participation in Community of Practice of the Literacy Classroom Language and health care Interactions Family Doctor Pharmacist Family and Friends Individual Participant Individual Shift in Perspective Transformation Mismatched Expectations Different Roles and Relationships Powerlessness Living Between Worlds Learning Context Individual Learner System

35. Strategies Patient - Provider interactions • Take your time, you will save time in the long run • Use common words not jargon (Clear Verbal Communication) • Ask the patient what they already know about their condition • Give people enough details in chronic illness self management patient education so that they can integrate the information into their lives

36. Strategies Patient - Provider interactions • Make sure that information is provided in a number of formats and • Make sure that the patient education you are providing is evidenced based • Review the information with the patients, make collaborative goals ( Schillinger, AMA, 2005) • Patients depend on health care providers to help them sort out relevant information and confirm information that they acquire from outside sources (Bakker et al, 2001) • Health care providers may make assumptions that the patient already understands the nature of his or her disease and not provide any information (London,1997)

37. “Teach Back” or “Show Me”(Schillinger, 2003) • Ask patient to demonstrate understanding by saying “What will you tell your spouse/friend about your condition ?” • “ I want to be sure I explained everything clearly, so can you please explain it back to me so I can be sure I did” • Please don’t ask if someone understands or has any questions. Most people will say they understand even if they don’t understand.

38. Strategies Community of Practice • Clinic or Program • Review all of the information that a patient receives from the different members of the team • Are there some pamphlets with out of date or even wrong information? • Do a needs assessment of the patients of what information is helpful to them • Do you need to redesign material, make sure to use a clear design approach

39. Strategies Community of Practice • Clinic or Program • Walk through the clinic process as a patient, collect all of the information that a patient would be given • Do team members provide conflicting information that the patient has to figure out? • Is information repeated at different appointments, we need to remember that people living with chronic diseases use information when they need it, not when we give it to them

40. Strategies System Changes • Change signage in the hospital • Have a shame-free patient centred environment by building respect relationship on trust • Simplify administrative procedures which oblige people to fill out complicated forms. • Develop easy-to-read information, consent forms, treatment plans • Coordinate care programs across sites, regions • Partner with literacy organisations • Lobby for increase adult literacy funding

41. From People living with limited Literacy and Chronic Diseases (Chiarelli et al., CPHA 2006) • Dealing with our health is just one part of our day-to-day concerns, including having a safe place to live, a decent job and taking care of our families • We may understand what to do, but don’t have the resources • Involve us in studies, planning and activities about prevention • Reach us through trusted contacts (e.g. literacy programs) and familiar places (malls, work, schools, community health centres) • Schools are a great place to talk about prevention because the whole family can be involved (we learn from our kids) • Use many ways to get messages out to us, and repeat again and again • Give us practical information about what to do using everyday words

42. “everyone of us is going to get sick one day. That's one thing that we can't hide ourselves from but they should give more effort and clear attention to the patient because that is when a person is sick you know they always have hope the doctor, the nurse you know somebody can help to do something for them.” Warda

43. Merci/ Thank You jking@uottawa.ca