The negative consequences of diabetes mismanagement do not affect the patient alone; but also the patients’ caregivers, the community, and the healthcare system, thereby causing global economic and social adverse effects. Diabetic patients are at higher risk of developing a number of incapacitating health problems; including high blood glucose levels, cardiovascular disease, blindness, kidney failure, and lower-limb amputation (International Diabetes Federation, 2019).
When it comes to diabetes control, it is not limited only to the anti-diabetic therapy, yet it requires managing the patient’s overall lifestyle which relies to a great extent on the patients’ own motivation and self-care. Therapeutic education plays an important role and works at ‘knowing’, ‘doing’, and ‘being’. The role of relevant educational programs in response to patients’ needs is essential in the success of treatment (Baudrant et al., 2007). Lubi (2019) confirmed that individuals suffering from chronic illnesses prefer maintaining their current lifestyles and are willing to look for relevant information, which is also related to the duration and severity of their illness.
In the case of diabetic patients, low levels of patient awareness on diabetes and its complications are generally associated with a higher risk of complications and bad disease prognosis. The decreased patient awareness is in turn associated with a lack of information, financial constraints, and lower education levels. Health illiteracy and misconceptions about diabetes are common. Abueleinen et al. (2011) has found that 35% identified the internist as the primary source of information on advanced diabetic eye disease; almost 9% identified media while only 3.5% selected reading printed materials as their main source of information on diabetic retinopathy.
Mass media can be an invaluable tool in reaching a large sector of the population and providing educational and awareness programs and campaigns via radio and visual media. The Internet serves as a platform that provides access to enormous amounts of data and a primary ‘turn-to’ hub for the patient. In fact, sometimes the Internet represents a competition with the clinician; simply using a few keywords to search for the symptoms of the disease can direct the patient to hundreds of websites discussing healthcare information (Gordon, 2011). The predicament here lies in the kind of content that the patient may access -in terms of level, quality, or trustworthiness, as the quality and appropriateness of information of the websites for patients are not evaluated or ranked. Unfortunately, patients may feel that the physician’s advice is outdated or contradicts the information available online. For better or worse, celebrities’ experiences or nontraditional approaches shared online may not be that effective (Gordon, 2011).
Health literacy and patient empowerment
Shulz and Nakamoto (2013a) reviewed the health behavior literature and found that health literacy and patient empowerment were the two related but distinct concepts driving health-related behaviors, affecting patient communication outcomes, healthcare costs, and public health efforts. Since the goal of patient empowerment is self-sufficiency and self-efficacy, health literacy is a foundational key factor in helping the patients become less dependent. Accordingly increased health literacy is not just increased information provision. Self-care and analyzing educational needs play an important role.
In mass media campaigns exposure to medical or educational messages is generally passive. The penetration of digital platforms and social media (SM) in the hunt for medical information has made for active autonomous involvement of the patient in her healthcare clear and prominent. However, this active autonomous involvement can be delusional. The search or adopting medicinal information can be shaped by patient biases, preferences, ignorance, and commercial directions. Patient empowerment should include factual knowledge, how-to knowledge, and judgment skills allowing patients to link the knowledge to personal goals (Shulz & Nakamoto, 2013b).
The concept of health literacy first appeared in 1974 in the US, where research advocated reaching minimal health education standards (Shulz & Nakamoto, 2013a). Ever since, health literacy is defined depending on the context in which it is used (Berkman et al., 2010). Starting from the functional literacy of healthcare in terms of ‘people’s ability to read and understand written information’ and expanding to include ‘the personal and relational factors that affect a person's ability to acquire understand and use information about health and health services’ (Batterham et al., 2016).
Camerini et al. (2012) have found a significant body of literature supporting the relationship between lower levels of health literacy and a ‘poorer’ health status, in terms of disease knowledge and management, use of health resources. There was a strong association between inadequate health literacy and poor compliance rates, increased hospitalizations, increased health costs, and general inefficient use of healthcare services. These results support the notion that ‘Health literacy’ is a multidimensional concept that impacts health-related behavior in a broader manner than simply the functional and numerical literacy of patients.
Health literacy is not meant to replace professional medical support. The goal of health literacy as an enabler in health decision making and grounded judgments such as; the capability of explaining the healthcare problem, to seek help, and to ask for changing or stopping a treatment protocol. Health literacy is expected to lead to improved health outcomes and physical wellbeing, and limit the actions or beliefs that impact health status negatively. (Shulz & Nakamoto, 2013a). Sarkar et al (2010) advocated involving patients with low health literacy and low access to internet-based services as part of the design of effective healthcare communication.
Nutbeam (2000) has three tiers for health literacy; the functional/basic literacy, the communicative/interactive literacy, and finally the critical literacy. The first tier is the basic level of literacy and functions through the transmission of factual information. The second tier, which involves building the skills and confidence needed by patients to continue in their journey, implement the health knowledge in daily practice and raise community acceptance and support to patients. Communicative literacy is best accomplished through personal communication and education. For achieving health literacy, Nutbeam (2000) advocated critical literacy which includes the ability to critically analyze and use the information to participate in actions that overcome structural barriers to health.
Batterham et al. (2016) presented six levels of health literacy assessment depending on the health service setting and the corresponding measurement purposes. The first level was the individual patients, and the main purpose of measuring health literacy for this group was to solve complex problems for patients. The second level of health literacy assessment was patient groups with the purpose of recognizing common contributing factors. The third health service setting to be assessed was individual health services aiming to create responding strategies. The fourth level was the assessment of involved local areas aiming to plan appropriate marketing and education strategies. The fifth level of health literacy assessment was national surveys comparing regions and groups across the same country.
Finally, the sixth level of health literacy assessment is used to develop international comparisons among countries to define role model countries that succeeded in improving health literacy and trying to adopt these models in countries with systemic low literacy.
It is important to measure the components of health literacy in order to assess the actualization of its objectives and purposes. The limitations of tools measuring only the ‘reading, comprehension and numeracy skills, and cognitive tasks’ overlooks the broader picture covered by modern definitions of health literacy. The Ophelia (Optimizing Health Literacy and Access) approach offers multidimensional health literacy measurement tools such as; the Health Literacy Questionnaire (HLQ) (Batterham et al., 2016).
Osborne et al. (2013) conceptualized, developed, and tested the Health Literacy Questionnaire (HLQ). It examines nine separate and distinct health literacy variables that reflect an individual's competencies and experiences when attempting to engage with health practitioners and services. The nine generated variables resulted from amalgamating responses and opinions from the general population, patients, healthcare professionals, and policymakers. Through rigorous development and testing, Osborne et al. (2013) indicated that nine distinct variables were conceptually robust, valid with good to excellent psychometric properties. Osborne et al. (2013) also defined the low and high descriptors of each variable on the HLQ they built in order to provide measurable data for each variable. In addition, Osborne et al. (2013) linked Nutbeam’s three tiers definition to the HLQ constructs and their corresponding scales, with expected elements of overlap emerging.
Batterham et al. (2016) have also explored the individual variations in two patient profiles using HLQ. If the nine variables of the HLQ tested in these two patients are evaluated as an average single score, the results will show that both patients have similar health literacy needs. However, upon examining all of the nine variables in each profile as distinct scores, the HLQ results provide a comprehensive overview of each profile that uncovers different health literacy needs for each patient.
For patients with long-term conditions, including diabetes, Friis et al. (2016) aimed at quantifying the levels of health literacy and compare this with levels of the general population. Using two variables from HLQ; “Ability to understand health information” and “Ability to actively engage with healthcare providers”, in their survey, Friis et al. (2016) had surveyed (n = 29473) in the Central Denmark Region. Patients with long-term conditions demonstrated a higher rate of difficulties in understanding and engagement with healthcare providers. Variations among disease groups emerged, with cancer patients facing fewer difficulties and mental health disorders and patients with more than one long-term condition demonstrating higher difficulties in engagements with healthcare providers. Lower education was also associated with lower levels of health literacy. Health literacy problems are manifested in some examples of consumer behavior such as demanding inappropriate medication as well as reduced adherence and even discontinuation of therapeutics (Osborne et al., 2016).
Extending the concept of health literacy to include the capabilities and resources required for individuals to conceptualize the e-health literacy Framework was the focus of Norgaard et al., (2015). Through using concept mapping to generate a comprehensive model of e-health literacy, Norgaard et al., (2015) carried out eight concept mapping workshops in Denmark and UK with patients and healthcare professionals to deduce the key insights and statements needed to form the e-health literacy Framework. The result of the concept mapping in these eight workshops yielded generated 450 statements by patients and healthcare professionals, the 450 statements were separated into 128 clusters. These clusters were categorized under 7 main domains that form the e-health literacy framework (eHLF) as follows: ‘1. Ability to process information, 2. Engagement in own health, 3. Ability to engage actively with digital services, 4. Feeling safe and in control, 5. Motivation to engage with digital services, 6. Having access to systems that work, and 7. Digital services that suit individual needs’.
Empowerment is the process by which people gain mastery over their lives. Empowerment is a common concept among several disciplines that intersect in explaining how for people to improve the quality of lives both in the workplace and at home, they should be able and motivated to bring about changes, not only in their personal behavior but also in their social situations and the organizations that influence their lives (Shulz & Nakamoto, 2013a). ‘Accordingly, empowerment is a relational construct (e.g. in the doctor-patient consultation) associated with the concepts of power, equity, and control of situations, and thus implies a capacity to solve problems and get a fair share of resources’ (Shulz & Nakamoto, 2013a).
Anderson and Funnell (2010) have argued that empowerment is both a process and an outcome. Empowerment is a process when the purpose of an educational intervention is to increase one’s ability to think critically and act autonomously. Empowerment is an outcome when an enhanced sense of self-efficacy occurs as .a result of the process. As such, when empowerment is considered an outcome, it’s not regarded as a present or absent variable, however, it is regarded as a continuous variable that can have incremental increases or decreases.
Camerini et al. (2012) presented the health empowerment as a multidimensional construct that covers self-esteem, self-efficacy, competency, locus of control, and other traditional psychological constructs. The profile of an empowered patient is described by Shulz & Nakamoto (2013a) as a patient who is not a passive receiver of information and advice. She actively seeks information, processes it, and tries to understand and extract meaning relevant to her condition. Then this empowered patient chooses and enacts behaviors she concludes is appropriate to the present health situation.
Shulz and Nakamoto (2013a) presented the operationalization of healthcare patient empowerment by breaking the construct down into four concepts; meaningfulness (or relevance), self-efficacy (or competence), self-determination (or choice), and impact. Focusing on patient empowerment as a concept presents the patient as an autonomous actor, responsible, and involved actively in decision-making regarding his or her health (Shulz & Nakamoto, 2013a). ‘The operationalization of empowerment described above aims more clearly at measuring the state than the process of empowerment. As measures of health literacy move to capture condition-specific knowledge, the issue arises whether condition-specific measures of empowerment are necessary. If empowerment aims at mastery over one’s life and health management, it can be assumed that it takes different forms for chronic and acute conditions, or for life-threatening and less severe conditions’.
Shulz and Nakamoto (2013a) have also agreed with Anderson and Funnell (2010) on the proposal that empowerment is a process and an outcome, and listed seven fundamental principles of empowerment. The researcher added the seven fundamental principles of patient empowerment (Anderson & Funnell, 2010) to the patient empowerment constructs developed by Shulz and Nakamoto (2013a).
Patients’ willingness to be more involved in health care decisions does not necessarily mean that the patients are experts but it means that they are more empowered. The main constituents of the concept of health literacy are knowledge and the ability to utilize this knowledge, but knowledge alone is not enough to make people more involved (Shulz & Nakamoto, 2013b). Worth mentioning is that the operationalization of both concepts distinguishes between empowerment and literacy highlighting what is involved in the empowerment process and can be classified as subjective factors.
Shulz & Nakamoto (2013b) have also provided an example of how direct-to-consumer advertising (allowed only in the U.S. and New Zealand) advocates the patient to ask their physician if the promoted medications are suitable for them. Upon assessing the patient's response to a print advertisement for a medication, the patients were very confused about the product claims; however, they sought medical advice from their physicians. These results support the argument that direct-to-consumer medical advertisements leverage patient empowerment further more than they leverage health literacy. Patients are not educated about the advertised medication, its expected course of treatment, or its adverse effects; however, they are urged to ask their physician for this advertised medication in response to the ad.
In a matrix combing the patient profiles considering the levels of the two concepts health literacy and psychological patient empowerment, four profiles adapted from Shulz and Nakamoto (2013b) include, the needlessly dependent patient, the high needs patient, the dangerous self-manager, and the effective self-manager. Camerini et al. (2012) pointed out that both health literacy and patient empowerment can simultaneously affect health outcomes. Although the presence of knowledge is not necessarily considered a motivating force of change, both health literacy and patient empowerment can leverage the patient’s self-management and accordingly the health outcomes.
According to Shulz and Nakamoto (2013b), empowering patient programs presume knowledge, while health literacy literature regularly looks to empowerment as a goal but assumes that high levels of expertise will result in involvement and self-management. Consequently, Shulz and Nakamoto (2013a) considered that health literacy is the linchpin for patient empowerment and this part will be the focus of the hypotheses in this research.