Health Literacy and Transition Planning for Teens Kris English, PhD The University of Akron

Health Care Changes Providers Terminology Expectations Supports Explanations Less Time, Guidance Take initiative Explain thoughts/ feelings Responsible for own care Care is now choice

What Do Teens Want in Health Care? (Britto et al., 2004; Van Staa et al., 2011a, b) Honesty Confidentiality Co-decision making Answer their questions Use language they understand Focus on them, rather than parents Take interest in them as a whole person Treat them like an adult, in most ways

What Teens Want (continued) Start preparation earlier Allow for more time, more choices Explain differences between pediatric, adult care Smoother, more organized transition Advice to other teens: – Prepare yourself – Get more involved in your care – Try to become more independent

What Do Parents Want? Start earlier Involve the parents Provide more information Include other life transitions Appoint someone to coordinate care Help teens become responsible, accountable

What Do Health Care Providers Recommend? Teens to improve: – Understanding of own condition – Self-management skills – Involvement in appointments  Transition protocol and organized joint consults  Smooth differences between pediatric and adult care  “Don’t pamper, but prepare”  Invest in patient, it will pay back

Own Health Own Health Care Autonomy Responsibility Confidence Self-Advocacy Rights & Accommodations Health Literacy Communication Planning & Decision Making Emerging Skills

General Health Nutrition Wellness Medications Allergies Importance of Regular Check-up s Medical History Hearing Loss Explain Hearing Prevention and Care How to learn more Own Health

Own Health Care Fill out an intake form Carry an insurance card Understand confidentiality Schedule an appointment Know social security number Have a primary care physician Access to contact information for health care providers What to do in the case of a medical emergency What constitutes an emergency

Plus Self-Advocacy, Rights, Accommodations, Planning, Decision-Making …

One Skill: Health Literacy

Health Literacy Defined: (Institute of Medicine, 2004) The capacity to obtain, process, and understand basic health information/services to make appropriate health decisions

Measuring Health Literacy Skills: Adults National Assessment of Adult Literacy (2006) :  Reading comprehension  Ability to interpret graphs  Numeracy (basic calculations)  Computer use

Health Literacy

Implications Persons at basic/below basic literacy levels not able to: – read or fully understand a newspaper article – fill out forms for SS, Medicaid, Medicare – follow a bus schedule or calendar Low literacy rates linked to: more mistakes in medication usage more emergency room visits, hospitalizations higher risk of death (Weiss, 2007)

Re: Audiology Misunderstand instructions for HA use Misinterpret www sites about CI, APD Inability to complete scales, questionnaires, medical/family history

Related Skill: Communication (NHES, 2102) Be able to: Articulate health concerns Describe symptoms accurately Ask pertinent questions Understand verbal information accurately

Also: Media literacy – The ability to critically evaluate media messages in all formats Although not mentioned in health literacy literature … – we might want to add “understanding/use of technology (apart from computers)” as a health literacy skill

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Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioning Adolesce Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioni No Info on Health Literacy re: Teens However, “planned transition” implies growth, development Consistent with contemporary understanding of health literacy as a growth process: “the wide range of skills and competencies that people develop to seek out, comprehend, evaluate and use health information” (Zarcadoolas et al., 2005, p. 196)

A Proposed Transition Plan

Caveat: What Do Families Value? Independence Interdependence

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Adolescents Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioning Adolescents Transitioni What About Health? NHS Health Care Adolescent Transition Plan (Royal College of Nursing, 2004) Focus: role as health care consumer Flexibility Age range guides slow, careful process Plan is revisited often Can and should be coordinated with IEP

Sample Health Goals Explain degree and nature of hearing loss Explain functional impact of hearing loss Describe, apply assistive technologies and communication repair strategies Case history information: – Etiology of hearing loss – Family history (hearing loss and other health concerns) – Blood type – History of injuries, illnesses, surgeries, additional health concerns – Current and past medications

Names, contact info of health care providers, insurance, emergency contact info Fill out intake, self-assessments Maintain health records Keep health information and other private data (SSN, etc.) secure Know basic health terminology (diagnosis, nausea, prescription, antibiotic) (Davis et al., 2006) Schedule and keep track of appointments

Explain legal rights and accommodations relative to health care Explain confidentiality and the patient-health care provider relationship Describe patient autonomy and patient rights Explain location, intensity, frequency of pain and other symptoms Understand explanations, instructions, options, recommendations

Resources  Adolescent Health Transition Project:  Got Transition? ghttp:// g

References Britto, M.T., et al. (2004). Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics,114(5), doi: /peds L Davis T., et al. (2006). Development and validation of the Rapid Estimate of Adolescent Literacy in Medicine (REALM-Teen): A tool to screen adolescents for below-grade reading in health care settings. Pediatrics, 118, Institute of Medicine. (2004). Health literacy: A prescription to end confusion. Washington DC: National Academies Press. National Assessment of Adult Literacy. (2006). The health literacy of America’s adults: Results from the 2003 national Assessment of Adult Literacy. Available:

Royal College of Nursing. (2004). Adolescent transition care: Guidance for nursing staff. Available: ntTransitionalCare.pdf van Staa, A., et al. (2011a). Crossing the transition chasm: Experiences and recommendations for improving transitional care of young adults, parents, and providers. Child: Care, Health, and Development, 37(6), doi: /j x van Staa, A., et al. (2011b). "What we want": Chronically ill adolescents' preferences and priorities for improving health care. Patient Preference and Adherence, 5, doi: //PPA.S17184 Weiss, B. (2007). Health literacy and patient safety: Manual for clinicians (2 nd ed.). Chicago: American Medical Association. Zarcadoolas, C., et al. (2005). Understanding health literacy: An expanded model. Health Promotion International, 20(2),