Methods to Improve the Delivery of Cancer Education

Methods to Improve the Delivery of Cancer Education and Their Effect on Health Disparities between High- and Low-Income Populations Tricia Richards Marywood University

Origin of Complex Question Quantitative research course Subtopic of cancer education and health disparities emerged during literature review focused on participation in mammography screening

Introduction Cancer patients want to learn more Malignancy, effects, treatment, rehabilitation, and prognosis Physicians are the most trusted source of information, followed by online information

Introduction Online activity Third most common online activity is health information seeking (first two are e-mail and general searching) As health care shifts toward increased patient participation in decision making, this activity is expected to increase

Introduction Associated with various positive outcomes Improved physical function, better quality of life, greater levels of self-care, more informed decision making, better compliance with treatment, and improved coping skills

Introduction Effectiveness linked to socioeconomic status (SES) and educational levels Lower SES patients experience communication and cancer education disparities due to barriers in accessing, understanding and using health information

Introduction Factors related to inequalities: Lack of access to primary care physicians English as a second language Limited literacy Reduced access to mainstream sources of health information

Introduction Cancer education inequalities Information gaps Disparities in health, cancer outcomes, and mortality

Introduction Understanding relationship between cancer education and health outcomes will inform strategies to reach and educate cancer patients across all SES populations Data related to social, behavioral, and cognitive factors that contribute to inequities provide guidance for educational interventions

Introduction Educational interventions may occur through healthcare providers, mass communication, reliable Internet sources, and public libraries

Complex Question "How can the delivery of cancer education be improved to reduce health disparities between high- and low-income populations? " Examined through lens of communication arts, health care and library science Conclude with ethics considerations and integrated summary

Communication Arts

Communication Arts Inequities in cancer education Access and potential benefits are not equitable across SES groups Education among goals of Healthy People 2020 and the Patient Protection & Affordable Care Act Communication about health disparities delivered through mass media refer to communication that highlights, brings attention to, or explains variances in health outcomes among groups

Communication Arts Mass media refers to message channels that reach wide audiences Messages delivered through mass media shape public opinion and policy-related outcomes Raise awareness of disparities Position health disparities as a topic of priority Raise beliefs that societal influences are directly related to health disparities Generating public support for relevant policies Mobilize patient advocacy groups to call for change

Communication Arts Knowledge Gap Hypothesis: concept that individuals with higher SES will acquire information from mass media faster than those with lower SES Lower SES populations Lower access to mass media Weaker comprehension Lower levels of exposure to health information through providers, materials and Internet Increasing digital use

Communication Arts Lack of reliable cancer education, or disparities in health communication, creates informational gaps, affecting health outcomes and widening health disparities Informational gaps refer to the differences among groups related to accessing, using, retaining, and acting on information Reduce potential for lower SES groups to lower their personal cancer risk or make informed decisions regarding treatment of existing cancer

Communication Arts Mass media and interpersonal communication influence health beliefs Theory of Planned Behavior posits that health beliefs are associated with intentions to participate in specific health behaviors and eventually engage in the behavior In this way, mass media influences public health Exposure does not equal comprehension

Communication Arts Cancer-related news announcements Death of Steve Jobs from pancreatic cancer and Angelina Jolie's voluntary prophylactic double mastectomy generated heavy news coverage and word-of-mouth exposure

Communication Arts News provides opportunity for education People access multiple channels to learn more: mobile, Internet, newspaper, television, magazine, interpersonal (including health care providers)

Health Care

Health Care Paternalistic to partnership Greater patient participation Improved communication leads to better education and outcomes Cancer education helps patients manage physical and psychological effects Patients want information on illness, treatment, side effects, prognosis, rehabilitation, survivorship, end-of-life care

Health Care Physicians are most trusted source Providers aren’t always available Hectic schedules Questions outside of encounters Patients turn to Internet Nearly 60% of American adults use Internet for health information Motivation influenced by: SES, health status, access to Internet resources

Health Care Lower SES and lower education associated with lower self-efficacy Differences in accessibility, use and comprehension impact health outcomes Motivation-contingency model suggests that low-SES cancer patients seek and develop knowledge when they have strong motivation or interest

Health Care Approximately two-thirds of cancer patients use Internet resources for cancer information Increasing trend Aging population Number of diagnoses and survivors Spike in awareness campaigns Situational factors Knowledge applied to decision making, so it needs to be reliable

Health Care Content varies in quality, accuracy and reliability Lack of regulation means much is incorrect Patients want physicians to determine what information is appropriate for them and what resources they should use National Library of Medicine and American College of Physicians piloted a project to meet health information needs; 2010 report shows success

Health Care Physicians want patients to be active in their cancer care Education is encouraged to maximize benefits of interaction Physicians may share resources that are linguistically sensitive, secure, beneficial Library partnerships have shown success because of physician referrals

Library Science

Library Science Some health education efforts shifted from providers to libraries President Obama called for public librarians to advance consumer health literacy Libraries offer accessibility, expertise and resources for training and information Inequalities in such access have historically led to health inequities Librarians viewed as trusted source

Library Science Lower-income groups are using libraries more than ever Physicians are trusted referents Librarian training on consumer health information to assist patrons with barriers Librarians help patrons determine reliability of resources Increased interest in topics informs collection development

Library Science Pilot study showed that consumer health information was among top areas of interest for public library visitors Health literacy named national priority and focus of public policy Institute of Medicine, National Library of Medicine, and US Department of Health and Human Services Health literacy refers to skill to access health information and capability to comprehend it

Library Science Libraries positioned to help Increased librarian education Assisting patrons with health information Tailoring information to diverse groups Increasing health literacy among users Collaborative efforts with health care systems and providers Partnerships continue to increase to meet stronger consumer needs

Library Science Library system improvements related to consumer health information are part of significant change in how librarians view their role in public health Result is greater appreciation of reference services and increased usage

Ethical Considerations

Ethics Patients use information to participate more actively and make informed decisions about self-management and treatment options Patient education is part of legal and ethical obligation known as informed consent or informed choice Grew from movement toward patient selfdetermination and individual autonomy as relationship model evolved

Ethics Code of Ethics for the Health Education Profession approved in 2011 by the Coalition of National Health Education Organization Upholds the rights of patients to make informed decisions, provided decisions cause no harm to others

Ethics Health educators expected to accurately educate patients about potential risks, benefits, and outcomes End goal of patient education is increased autonomy

Ethics Kantian theory identifies autonomy as the ability to govern oneself using reason and supports the ideal of respecting the dignity of others Reasonable patients typically choose care Ethical implications arise when patients who are educated about their illness decline care Others choose not to be educated about outcomes causing fear or anxiety

Ethics Kant applies the idea of autonomy to reasonable individuals who are worthy of respect by others Patients may not be reasonable or rational A Kantian approach may carry the ethical burden of determining what actions will advance patients' free will and dignity

Ethics Ethicists may see multiple physician choices when a patient declines treatment: Implement care out of beneficence, respect for others, and duty of care Delay treatment in expectation of greater patient competence in the near future Honor the patient’s wishes out of respect for patient free will and dignity Attempt persuasion to reconsider Choices guided by ethical behavior and law

Integrated Summary

Integrated Summary Cancer patients want to learn as much as possible about all aspects of their illness Patients educated about their illness have Improved physical function Greater self-efficacy More informed decision making Better compliance with treatment More positive outcomes than patients who are not educated about their illness

Integrated Summary Lower SES populations have less ability to access, use and understand cancer information Lack of information leads to gaps that affect health outcomes Patients need clear, relevant, useful information from trusted resources Physicians are most trusted referents Patients want resource recommendations

Integrated Summary Research has shown several methods to improve delivery of cancer education to reduce health disparities: Use of mass media Improved patient-physician communication Physician referrals to reliable resources Collaboration with medical and public librarians

Conclusion

Limitations Little research on low-SES population’s use of public libraries specifically for health information Many collaborative efforts among health care providers and public libraries are still fairly new and may not have longitudinal data

Future Work General: Recommend research and promotion of programs that enhance health literacy among all populations Personal: Incorporate these findings into dissertation examining behavioral predictors of participation in cancer screening activities

Conclusion Invitation for questions and comments

Reader Questions

Have physician extenders been used for cancer education? Yes. Many health care organizations are using physician extenders, such as physician assistants, nurses, and health promotion professionals, to educate cancer patients. While there is much benefit to that, patients name their physician as their most trusted source of information and express desire to receive more information directly from their physician.

You talked about the need for reliable cancer information. How is reliability determined? There is no regulation on health information online, but some organizations are working on developing tools to measure the accuracy and effectiveness of online information. In the meantime, reliability is being determined by the credibility of the organization that publishes the information (JAMA, CDC, etc. ).

At what grade level is effective health information written? In consideration of varying literacy levels and the readers’ potential distraction of emotional distress related to health issues, most health information is written at a sixth grade level.

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