Background
Methods
Identifying key constructs
Theoretical development
Data analysis
Results
Conceptualization process
Conceptualization Process | |
“You need to focus on functional health literacy, which is a concept that describes the practical application of a wide range of cognitive and non-cognitive skills in real life, rather than a single literacy skill in a clinical setting.” (Key-Informant) | |
“Frame your model to develop a functional health literacy tool, which is the outcome of intervention rather than the independent variable and captures how people use literacy for their health. Your framework for health literacy should follow a life course determinant model.” (HL Researcher) | |
“Most of the HL work myopically focuses on the patient side. It’s time to focus on health care professionals and the system’s health literacy. Doing so, we need to work with public health professionals, work with journalists. Need to measure both sides of the partnership and the context [patients and care provider]. Analyze the tasks, tools and systems.” (HL Researcher) | |
Proposed CADMaHL Model | |
“… well, your framework should cover two different things: I think if you want to measure ability to obtain and understanding the concepts, information, and services, I would go with the first four domains, accessing, understanding, communicating and evaluating. If you want to measure people’s agency and confidence in using information to make change, I’d go with the Use domain at the end of the spectrum.” (HL Researcher) | |
“Your definition [Calgary Charter definition of HL] seems adequate except from the addition of a link between health literacy competence and changes in lifestyle or disease management practice.” (HL Researcher) | |
“To me, health literacy means ‘enacting’ or ‘putting into practice’ the knowledge for living healthy. I would like to see a tool asking patients [to] illustrate how they would actually enact or use information they obtain into self-management practice – this is health literacy!” (Respiratory Educator) | |
Module 1.1 Access | |
“Whether individuals are competent to access needed services, handle transitions, and find relevant information, which indeed are the navigation skills”. (Key-Informant) | |
“Maybe you should add navigation skills into the accessing information domain to see if you can assess your patients’ ability to seek and find needed information.” (Key-Informant) | |
“Lots of people think they can go and find information [themselves]; everything they need to know about medications now, yet 80% of the stuff you find on the web is crap. So, unless they go and get good advice from their doctor, they are going to be misled by internet and exposed to unnecessary risk.” (Patient) | |
Module 1.2 Understand | |
“I use plain language and then the teach-back method to get the patients to show me what they retain. For example, when I am teaching an inhaler, I have placebos for them to use to show me what I have just taught them. So, sometimes they get to understand that way”. (Respiratory Educator) | |
“[In using prednisone] some things might not be clear to people because of jargon [used by the doctor] which might make this more difficult”. (Patient) | |
“Still, I do not know the different types of inhalers; I know one helps me faster than the other, but I don’t really understand the difference between the puffers. Information in English that are verbally translated to a foreign language are often difficult for patients (non-English speaking) to understand”. (Patient) | |
Module 1.3 Evaluation | |
“If after following the doctor’s information and instruction I am actually able to manage my chronic condition, and actually able to see that the amount of flare ups have been decreasing, I would apply it in my daily routine when I get positive reinforcement.” (Patient) | |
“How do I know whether the information is useful? I’ll try it out, what, like, if the doctor has said and if it works then I’ll follow. So, it is a trusting of my doctor’s knowledge and also my feeling that it works for me.” (Patient) | |
“… it [information] has to be able to allow you to use it to make some sort of a strategy and then be able to evaluate if it’s working, if it’s not working, if it needs to be adjusted before you apply it again.” (Patient) | |
“The person’s ability to find relevant health information and support is the first step to self-manage their disease. It highly depends on patient’s needs to assess the information they receive (with a recognition that relevance of the information depends on their current personal needs and changing contexts of their lives) and use this understanding in decision-making which will lead to actions which are health enhancing.” (HL Researcher) | |
“In order for information to be useful, first of all, you have to identify with it. It has to be pertinent to you. It has to be accurate. It’s something that I’ll look at and it might raise a question or two that I can take to my doctor.” (Patient) | |
Module 1.4 Communication | |
“My doctor should convince me why I have to take a new medication, but there are other people around me that always ask ‘why [are] you taking this medication?’ ‘Don’t listen to them [doctors].’ ‘That’s not good for you, but you have to decide.’ That’s the kind of communication challenge that I’m normally juggling, what should I do? Should I listen to my very good friend [sic] -- my family next to me for many years? Should I listen to my doctor because I trust my doctor?” (Patient) | |
“I feel that gender differences are a barrier for communication with health care providers.) I know Muslim women have to go to a woman doctor because they are not allowed to have another man see any of them. It affects some cultures because they can’t you know. It’s just the way it is”. (Patient) | |
“People don’t like telling their doctors [disease-related] things. I feel the honesty is not there. I am not excluded from that.” (Patient) | |
Module 2. Output | |
“I just kept on smoking into the 1990s and then I quit. That’s when it was explained to me clearly [by my doctor] that I wouldn’t live too long with COPD if I didn’t stop smoking.” (Patient) | |
“A health-literate person is capable to enact or put into practice the information (actually practice knowledge) for living a healthy lifestyle. Therefore, I think change or reinforcing healthy lifestyle practices should be the main output of health literacy.” (HL Researcher) | |
“I followed instructions [given by my doctor] and monitored my asthma mainly because of my experience in using it and it worked; so, it was the feeling of need and trust to apply it.” (Patient) | |
“Well, I believe to integrate information into lifestyle, one needs readiness for change and motivation to use the information.” (Patient) | |
“Application of health information in routine disease management practice is a self-reflexive action component whereby the person possessing the health information uses it by taking action on their own behalf for the purpose of changing and improving their health. The patient should have enough skills to use health information more directly to make judgments about what to do or not to do.” (Respiratory Researcher) | |
“I think the reason patients use the information and incorporate it in their disease management is because of its safety; that’s the information and services is being safe to apply; like if they see positive results from something I’ve told them, whatever it may be like, you know, if you take these inhalers properly [for] 6 to 8 weeks, your shortness of breath will improve, and if they see those results then they’re more likely to be willing to be receptive to other information [received from me] and actually use it. There is a clear recognition that if they use information, their lives are going to be better.” (General Practitioner) | |
Module 3. Outcome | |
“If you don’t evaluate a health outcome relative to HL, you’re selling yourself short. Better access and comprehension should lead to better outcomes. HL is not meant to be normative, and doesn’t predict compliance, but should, overall lead to an improvement in the aggregate.” (HL Researcher) | |
“Health literacy is one of the most powerful tools we have to empower people.” (Respiratory Doctor with HL Knowledge) | |
“Empowerment is a key element of health literacy. It includes not only health promoting behaviour but also the ability to perform primary and self-care and, also, motivate patients to ask questions.” (Respiratory Doctor with HL Knowledge) | |
“I think HL is empowerment of obtaining and understanding health information and utilization of the information to make sound decisions (health-enhancing decisions). Patients need reliable and user-friendly information about how to stay in good health and the effects of lifestyle on their health.” (Respiratory Doctor) | |
“One of the most obvious impacts of improved HL is an empowered individual with basic skills to self-assessment, self-management as well as awareness of the changes happening in their health. Altogether may reveal the level of effective application (functionality) of gathered information in their real-life situations revealing their skills to act to improve health.” (Health Literacy Researcher) | |
“HL should empower people with self-care skills, assertiveness skills and problem-solving skills.” (Respiratory Doctor) | |
Module 5. Impact | |
“We need a broad and integrative approach which will be messy and sometimes changes people’s lives, as I believe health literacy is not merely increased knowledge but it should be eventually ended with a change in behaviour.” (Respiratory Researcher) | |
“[In measuring the impact of health literacy] Multiple sectors need to be engaged and messages must be crafted and supported using data and language that resonates with each target audience”. (Health care Policy Maker) | |
“It is important that health literacy supporters be prepared for capitalizing ‘windows of opportunity’ by demonstrating the powerful contribution health literacy can make to health promotion, disease prevention and care”. (Health Literacy Researcher) | |
Module 6. Crosscutting Factors | |
“… [Patients] are less inclined to ask questions due to their cultural beliefs and that makes it harder for them to follow instructions or feel confident with asking questions as well.” (Clinician) | |
“Some individuals are intuitive in terms of how they apply their experience in understanding the information and some others are more analytical and they both have different temporal demands on how they absorb the information and make sense of it in their routine life.” (Policymaker) | |
“If they don’t see the priority of using information for their health, its use is pathetically low and they are not going to engage in it. That’s because most people’s lives are so crap and using the information that looks boloney to them isn’t going to help them with anything. So, we can sit in our offices and put all these messages out, but unless the person’s context allows them to use it, that is they are safe to use it or they need to use it, then they see there is actually a need to act on it.” (Respiratory Doctor) |
The proposed CADMaHL model
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3-2a. Input: Includes four HL domains and numeracy. These domains encompass how an individual actively navigates and obtains health information, understands and evaluates this information, and communicates with others about their health issues.
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3-2a.i Access. This was one of the most debated domains among both the patient and professional groups because it was often stated that health information should initially be provided by the health care system in a simple, effective way, which is both accessible and available. Therefore, it is important to consider the bidirectionality of the access domain (i.e., resource provision by providers and access by patients). It was suggested that we consider the challenges presented to patients in accessing information that is relevant, accessible, available and acceptable in our model (i.e., ability to access available quality information/resources). A key-informant stated, “I learned by experience that the information needs to be accessible to patients. Even if it’s accessible to them but they don’t understand the language, it does not make sense, so it should be user friendly and should be accessible and available.” Our previous studies also indicate that an individual’s need for health information is highly dependent on what health-related demands they face (e.g., contracting a particular disease) and whether they are exposed to information unintentionally, or intentionally while navigating and searching for information themselves [60‐64, 73]. Therefore, we considered access-related skills in our model to be a two-sided balance: (1) passive access to information (e.g., unintentionally received from their physician during an appointment without asking for it, learned in conversation from friends or family members) and (2) active access, which is their ability to know where to look and ability to proactively seek and find the information that they need (e.g., visiting health-related websites, asking the physician to provide specific information). A patient mentioned the times needed for active and passive access, “The provider’s information at the very first visit has to be very clear about when someone should rely on what they can find themselves and when they should consult the professional who can help them with the task.” Quotes on the ‘Access’ domain are summarized in Table 1-1.1.
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3-2a.ii Understand. Most patients expressed challenges with understanding information (provided in oral or written format) related to the use of medical jargon or complex terminology during interactions with care providers or other sources, particularly regarding symptom recognition and the treatment process. One patient indicated, “My doctor has a tendency to use big words, I’m not that smart, and sometimes I don’t hear things properly so he repeats it for me and writes it down for me, but I [need] him to explain it to me in a way that I understand.” Another patient identified that a barrier to fully understanding and comprehend was a limites time during the visit between the patient and care provider: “My doctor [had to] explain my disease and action plan to me very quickly. I guess she thought I was understanding her, but until I went back home to read the action plan and I realized I didn’t understand exactly what does it mean (sic)...I had to go back and find out information because she did that rather quickly.” Physicians also discussed the same challenges expressed by the patients: “I think we as clinicians have to be careful to use laymen’s terms and not so much the medical terminology.” Among other skills, patients expressed numeracy skills (the ability to calculate numerical information) as necessary for an individual to understand and apply information provided in the health care system. For quotes on the ‘Understand’ domain, please refer to Table 1-1.2.
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3-2a.iii Evaluation. The capacity to make inferences based on available information and the ability to select reliable health information sources and comprehend the relevance of the information to their own health issues were components suggested by key-informants for inclusion within the evaluation module. In addition, to evaluate the applicability of the obtained information or instruction, participants identified two key components of the evaluation and validation process: 1) evaluation of the obtained information before using it (pre-application) and 2) after using it (post-application). During pre-application evaluation, there was consensus among patients and professionals that perceived credibility and trustworthiness of the information source, which may be influenced by a patient’s biases towards different information sources, were the main factors that prompted individuals to act on or apply the information/instruction. A common sentiment among HL researchers and clinician scientists is that HL is not simply about the medical knowledge that a patient can acquire. Rather, it is the sum of all sources of information that the patient comes across and evaluates; most of the time the patient does not solely rely on the information shared by health professionals, they may seek resources from sources of varying reliability (e.g., the internet, friends/family). Therefore, key-informants suggested including the accuracy, consistency, relevancy, and source (i.e., credibility) of information into our model. A patient stated, “Well, for me it’s going back to getting the information from a source, usually a trusting source, then go and research it from 20 different reputable sites, and then it’s worked the majority (sic) of it for me because once I’ve researched it enough and I feel comfortable and part of it is your intuition too that comes into play”. For the post-application evaluation, many patients indicated they would continually apply the information in their routine disease self-management process if they had positive experiences after their initial use of the information. The ability of patients to discern quality information from poor information across a wide variety of sources/inputs is imperative to their disease self-management and health outcomes. More quotes on the ‘Evaluation’ domain can be found in Table 1-1.3.
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3-2a.iv Communication. Many patients and professionals indicated that HL is influenced by interactions with care provider(s) or others who may have shared experiences or some knowledge about the disease. A HL researcher mentioned, “Respectful communications between provider and patient leads to successful interactions. The mismatch is what is driving the poor outcomes.” The participants also identified different barriers to proper communication between the patient and care provider. For instance, a respiratory educator emphasized the importance of using proper communication channels to provide critical information to patients, “First, present important information such as risk information in ways that are accessible to people who communicate with different language than English or French. Second, we need effective vehicles for communication particularly risk information to patients...making sure that it’s lay language that is used.” The information should also be presented in a manner that is culturally and linguistically appropriate for the patient. Additional quotes on the ‘Communication’ domain can be found in Table 1-1.4.
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3-2b. Output: This module focused on a patient’s ability to act on the obtained information and services to perform self-management practices (e.g., using learned disease management strategies to prevent an exacerbation). Although different measures of HL refers to skills related to the understanding and communication of health information [3, 4, 12‐14], there must be a purpose for obtaining the health information [73]. This was evident in the feedback from the patients and professionals in our study, who suggested that health information should be used to make sound health decisions and practice health-promoting behaviours. Therefore, to feel fully empowered and health literate, a patient must have the ability to put knowledge into practice [42]. Participants introduced a clear definition of ‘using’ information: adapting and applying information from trusting source(s) into daily life for disease management. Patients also indicated that when they received relevant and easy to understand instructions or information about their chronic disease from trusted sources (e.g. their doctor); they were more likely to apply it to their disease self-management. A patient mentioned, “I got the actual action plan and my doctor explained it in a way that I understood, and I would use it … well, I learned this will help me to prevent more severe flare ups that is why I will use it.” However, application of the obtained information into an individual’s daily routine, outside of the clinical setting, was not always straightforward. Motivation to navigate information and apply the information was expressed by both patient and professional groups as a necessary aspect of disease management. Another patient mentioned, “I’ve read all the stuff I received from hospital people. I have listened to doctors. I understand everything about it. Nevertheless, when it comes to actually doing it regularly and keeping where you should be, I have faltered many times and not sticking with it. So, I think I need something to convince me to take it and apply it in my disease control process.” Patients must first understand the reasons for applying certain health information into their daily lives before they are prompted to do so, and care providers can facilitate this process. Quotes on the ‘Output’ module can be found in Table 1-2.
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3-2c. Outcome: This module explains how HL contributes to patient empowerment (providing patients with the right knowledge and confidence to take care of their disease management) and self-efficacy (a patient’s belief that they can control their own disease management process) to influence successful achievement of health care goals. Self-management practices for CAD patients included: disease specific knowledge, knowledge of triggers that could affect health condition, symptom identification, action plan navigation and adherence, inhaler and other medication administration, medication side effects, medication interactions, proper diet and healthy food intake, involvement in routine exercise, and smoking cessation and its role in disease self-management. Many key-informants believed that HL should empower patients to take control as the main caretaker in their disease management. A HL researcher indicated: “The empowerment skill, as an outcome of HL, I think, will help patients to be proactive and self-confident...I think HL is empowerment of understanding health information and utilization of the information to make sound decisions.” Patients must feel that they are in the driver’s seat of the disease management process, and be capable to act as the driver in this process. Quotes on the ‘Outcome’ module can be found in Table 1-3.
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3-2d. Assessment: The input of patients and health professionals at different stages of the study enabled us to determine measurable aspects of HL that may inform interventions and HL measurement tools. Throughout the process, we learned from patients and key-informants that HL assessments using a self-evaluated approach (where patients report their perceived ability to act in hypothetical health-related situations) may not provide an accurate representation of an individual’s skills due to reporting and self-desirability bias. Key-informants recommended testing the functional HL abilities of patients by assessing their true ability to act in situations, using real-world passage-based scenarios. A HL researcher suggested, “In your model, you need to assess patient’s functional skills, navigation capability, understanding instruction/ information, and motivation to apply the knowledge into practice with [a] measurement tool.”
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3-2e. Impact: This module defines the mediators between HL and health outcomes, resulting in behavioural change, disease control, and improved health status and outcomes. It demonstrates the process of improving disease self-management outcomes as the results of improved HL skills. One HL researcher expressed, “Learning more about the expectations and demands on a person with chronic disease will help to conceptualize the model to assess the change in person’s behaviour and lifestyle.” Empowering patients through targeted interventions aiming to improve HL may enhance their self-management practices and future outcomes. Quotes on the ‘Impact’ module can be found in Table 1-5.
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3-2 f. Crosscutting Factors: This module is comprised of diverse factors that are applicable to all four HL INPUT domains. These factors include, but are not limited to, cultural beliefs/values, personality, and self-efficacy. We also noticed the importance of a person’s cognitive capacities, socio-economic status, physical disability, social skills, motivation/need, prior knowledge, and disease management experience from previous encounters with the health care system. Similarly, community/cultural norms and beliefs may motivate or inhibit a person to engage actively in self-management practices. A researcher stated, “There are numerous factors influencing a person’s decision to integrate the obtained information and services into their lifestyle, such as beliefs and readiness for change and motivation.” Many patients were concerned about being stigmatized in the health care system, because they had previous difficulty expressing themselves due to language barriers, accent or inability to understand and felt embarrassed to ask questions. A patient indicated, “… you don’t even want to voice your symptoms because first of all it’s not going to lead you anywhere and secondly, people [care providers] humiliate you.” Patients mentioned several specific motivators (cues to action) that help provoke them to seek needed information or apply the obtained information in their disease management or behavioural change process. These include exacerbations or worsening of symptoms, fear (of what could happen), self-motivation, and external motivation (support from community or system). A patient expressed that “I need to have the external bond [network] to use the exercise plan [pulmonary rehabilitation program] if they [other patients] do it as well …” Another patient confirmed this point by stating: “… a peer group … would help too.” Quotes on the ‘Crosscutting Factors’ module can be found in Table 1-6.
Discussion
Dual application of the proposed HL model
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4-1a. AssessmentOur CADMaHL may inform the development of HL measurement tools that can assess disease self-management practices, which can help clinicians and researchers to determine how their patient/client performs in disease self-management, what the difficulties in performing tasks and actions are, and what practical approaches are needed to improve potential gaps. Our model emphasizes collecting information about not only HL, but also the psychological, cognitive, behavioural, and systemic factors that may affect patient/client performance. Such information can help clinicians and health promotion researchers identify the skills, tasks, and factors that may serve as enablers or barriers to performing disease management practices.
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4-1b. Intervention: We have developed a multi-dimensional framework that addresses a variety of HL factors across the core five domains and numeracy, which may allow for more effective and holistic HL interventions. In our model, HL interventions can be viewed as a process of patient-centered strategies that engage patients, caregivers, and care providers to develop educational resources that would enable successful disease self-management practices and navigation of the health care system. The concepts contained within our model will allow for patient-oriented HL interventions that empower patients to improve their health status by considering the internal factors, cultural/community norms and values, social support, and complexity of accessing and using health information and care services during the design and implementation of such interventions. In addition, the interventions should emphasize the tasks or actions that are required for patients to take, aiming for optimal disease self-management performance. Finally, our tool may serve as a knowledge repository for professionals across many different HL-related fields. As advocacy for HL is broad in its scope, engaging all levels of decision makers from sector-specific policy makers, to educators, to leaders of professional organizations and to the public at large, should be an important element of creating a health literate competent care system [86, 88, 92]. An important instrument in these efforts is the media [93, 94]. Efforts must be made to engage both conventional and social media since the ubiquity of chronic disease and the rapidly increasing coverage of its determinants, consequences. and management provide a ready-made venue for integrating the narrative about the role of health literacy in care services.