The meaning of patient education experiences for adults with limited literacy and chronic illnesses

There is a direct link between literacy skill level and health. Low literacy skills affect a person's ability to effectively use health services, take medications, and understand other information provided to them regarding their health (Health Canada, 2001). The purpose of this study was to uncover the meaning of patient education experiences for adults living with limited literacy and chronic illnesses. An inductive, interpretive, hermeneutic phenomenological method was used (van Manen, 1997a). A purposeful sample of 14 adults who were attending literacy programs and had chronic illnesses were interviewed. From these interviews, five themes were ascertained: different roles and relationships, living between worlds, language and health care interactions, mismatched expectations, and powerlessness. Adult learning theories helped illuminate how adults with limited literacy and chronic illnesses make meaning of patient education experiences. For the purposes of this study the following adult learning theories were used: Transformational learning theory (Mezirow, 1995), situated cognition theory (Kirshner & Whitson, 1997), and critical theory (Welton, 1995a). This phenomenological study shone a light on the patient education experiences for adults living with limited literacy and chronic illnesses and exposed the meaning of these experiences as one of a shifting in meaning perspective for the participants. This shifting in meaning perspective was a result of their community of practices within their literacy classrooms which allowed them to enhance their literacy abilities. This, in turn, allowed them to confront the barriers within the health care systems that blocked their full engagement with the health care system. Although some of the barriers continued to exist for the participants, they were better able to able to identify and confront them. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Limited Literacy and Chronic Illnesses 1 CHAPTER ONE INTRODUCTION In this introductory chapter, the importance of the topic will be presented as well as definitions of key terms. To help situate the research, a presentation of the health care and adult literacy contexts will be offered. Finally, an outline of the organization of the remaining five chapters will conclude this introductory chapter. Importance o f the Topic There is a direct link between literacy skill level and health. Low literacy skills affect a person's ability to effectively use health services, take medications and understand other information provided to them regarding their health (Health Canada, 2001). Patient education is an essential component of treatment for people with chronic illnesses. During many years of interacting with the health care system, individuals living with chronic illnesses receive much information. This information includes advice regarding exercise, nutrition, medication, and community support services. Information is provided in many forms. Health providers see this advice as vital to maintaining health and quality of life in the face of a chronic condition (Redman, 2004). The ability of many Canadians to use health information is doubtful when one considers research related to health literacy. The International Adult Literacy Survey (IALS) estimates that 22% of adults in Canada have difficulty in tasks no more complex than determining the maximum number of days they should take a medication by simply looking at the label. An additional 26% of Canadians can only deal with material that is simple, clearly laid out, and put in familiar contexts (Statistics Canada, Human Resources Development Canada, & National Literacy Secretariat, 1996). Furthermore, the preliminary results from the most recent international adult literacy survey conducted in 2003, the Adult Literacy and Life Skills Survey (ALL), indicate that the average literacy score for Canadians Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Limited Literacy and Chronic Illnesses 2 has not changed significantly in the nine years since the IALS was conducted (Statistics Canada & Organisation for Economic Co-operation and Development, 2005). If at least one in five Canadians has difficulty with tasks no more complex than the instructions on a medication label, it is likely that health professionals see patients who have limited literacy every day. These professionals ask patients to fill out pre-assessment questionnaires and consent forms. They give patients written material designed to supplement verbal explanations and to remind patients of instructions that may have been misheard or forgotten. If patients cannot decode or understand the material following their contact with the health care provider, health problems may be exacerbated. This may further lower the quality of life of the patient and result in additional treatments and increased costs to the patients and the health care system. Health care professionals often overestimate a patient's level of reading comprehension and may attribute failure to follow instructions to poor motivation (Bass, Wilson, Griffith, & Barnett, 2002; Osborne, 2001). Patients with limited literacy could be unduly penalized in receiving patient education information because they are often in physically and psychologically vulnerable states due to their illness and the possible feelings of shame of being discovered to have low literacy skills (Parikh, Parker, Nurss, Baker, & Williams, 1996). The result may be that patients are ill equipped to make informed decisions about treatment and prevention of further health problems. The literacy and health link has just begun to be examined over the last two decades (Rudd, Moeykens, & Colton, 2000). Research in literacy and health has focused on policy issues, program evaluation, and assessment tools (Greenberg, 2001), while the patient education literature has focused on readability of patient education material and increasing the awareness of literacy issues among health care professionals (Osborne, 2001; Perdue & Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Limited Literacy and Chronic Illnesses 3 Degazon, 2001). How adults living with limited literacy and a chronic illness experience patient education has not been investigated. This study attempts to help fill this gap in the literature. In determining a methodology for examining the meaning of patient education to individuals living with chronic illness, it is first necessary to clearly define key terms and describe the context of this experience. Definition o f Terms Definitions of the following key terms used in this thesis will be presented in this section: chronic illness, patient education, health care professional, limited literacy, and literacy and health. Some of these definitions will be further expanded in the literature review presented in the following chapter. Chronic Illness Chronic illness and chronic disease are often used interchangeably in health care research and health care practice. Illness is defined by The Canadian Oxford Dictionary as “a disease, ailment, or malady or the state of being ill” (Barber, 2001, p. 705). Disease is similarly defined as “an unhealthy condition of the body or mind; illness or sickness” (p. 399). Disease has also been defined as “a deranged, depraved, or morbid condition” (p. 399). Given that this definition may have a negative connotation for the participants, the word illness will be used exclusively throughout the study. For this study, chronic illness was broadly defined as any physical condition associated with a decrease in health lasting more than six months, and for which contact had been made with one or more health care professionals. A chronic illness is not a terminal illness; a terminal illness is usually defined as an illness that is expected to lead directly and shortly to death, such as metastatic cancer (Barber, 2001). In this study, the chronic illnesses experienced by the participants included diabetes, arthritis, high blood pressure, and asthma. Reproduced with permission of the copyright owner. Further reproduction prohibited without permission. Limited Literacy and Chronic Illnesses 4 Patient Education Patient education can be defined as any information, advice, or other knowledge that is geared towards helping someone understand and address his or her health problem (Redman, 2004). For this study, patient education included information that health care professionals provided as well as the information that the patients accessed on their own (e.g., health advice from their friends and family). Therefore, patient education included all the different sources of health information and health advice that individuals use in making health-related decisions to manage a chronic illness and is thus viewed as an intervention. Informal Learning The expected outcome of any educational intervention is learning. For this study, the learning process of the participants would fall within informal learning. According to Marsick and Watkins (2001), “informal learning is usually intentional but not highly structured” (p. 25). As well, informal learning is “the sort of learning that occurs when people consciously try to learn from their experience” (Foley, 2004, p. 4). How informal learning relates to other types of learning will be expanded upon in chapter 2. Health Care Professional For the scope of this study, the term health care professional will be used to describe all of the people working in health care who, in their formal role, are expected to provide patient education while interacting with patients. The general term health care professional will be used throughout the thesis unless the information pertains to one specific health professional group, in which case that professional group will be noted. Limited Literac