University of Groningen Improving communication in healthcare for patients with low health literacy Kaper, Marise

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Improving communication in healthcare for patients with low health literacy

Kaper, Marise

DOI:

10.33612/diss.172455932

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Publication date: 2021

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Kaper, M. (2021). Improving communication in healthcare for patients with low health literacy: Building competencies of health professionals and shifting towards health literacy friendly organizations. University of Groningen. https://doi.org/10.33612/diss.172455932

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559391-L-bw-Kaper 559391-L-bw-Kaper 559391-L-bw-Kaper 559391-L-bw-Kaper Processed on: 27-5-2021 Processed on: 27-5-2021 Processed on: 27-5-2021

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General introduction

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INTRODUCTION

Large numbers of people in Europe have difficulty in handling health issues due to limited health literacy skills [1]. People with limited health literacy skills find it difficult to comprehend information, navigate healthcare organizations, actively take part in self-management of their health, and interact with health care providers [1–8]. This eventually leads to poorer health outcomes and reduced quality of life, and contributes to inequality in populations [1, 6, 9]. Originally, health literacy problems were viewed from an individual perspective [10–12]. However, professionals have come to realize that these individual problems are often augmented by the complexity of health care systems and increasing expectations that patients or clients should be actively involved in managing their own health [8, 12, 13]. Health care organizations and professionals have the responsibility and options to adapt the provision of their services to the needs and abilities of their patients and reduce the negative influence of health literacy problems [13, 14]. Therefore, the main aim of this thesis is to assess how health care professionals and organizations can improve communication with and provision of healthcare to people with limited health literacy.

In the following sections we describe successively: the concept of health literacy and the consequences of limited health literacy; ways to intervene in health literacy; and the challenges, potential interventions and priorities for research with regard to health professionals; and regarding health care organizations. Next, we describe the context of the European project entitled: “Intervention Research on Health Literacy among the Ageing Population” (IROHLA), within which the research for this thesis was conducted. Finally, we present our objectives and an overview of this thesis.

HEALTH LITERACY AND ITS CONSEQUENCES

During the last twenty years, the scope of health literacy has been explored and a number of definitions have been developed [8]. Most definitions relate to the health literacy skills of individual people, commonly asserting that health literacy includes the abilities to access, understand, appraise and communicate information about a person’s health [8]. In line with Kwan et al. (2006, p. 80), this thesis defines the concept of health literacy as “the degree to which people

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are able to access, understand, appraise and communicate information to engage with the demands of different health contexts in order to promote and maintain good health across the life-course” [15].

Health literacy is frequently divided into three categories: functional, interactive and critical [10, 11]. In this thesis we will relate these three concepts to relevant strategies to strengthen health literacy. We here provide their definitions:

- Functional health literacy is defined as: “sufficient basic skills in reading and

writing to be able to function effectively in everyday situations” (Nutbeam [2000,

p. 263]) [11].

- Communicative or interactive health literacy implies: “more advanced

cognitive and literacy skills which, together with social skills, can be used to actively participate in everyday activities, to extract information and derive meaning from different forms of communication, and to apply new information to changing circumstances” (Nutbeam [2000, p. 263, 264]) [11].

- Critical health literacy is defined as: “more advanced cognitive skills which,

together with social skills, can be applied to critically analyse information, and to use this information to exert greater control over life events and situations”

(Nutbeam [2000, p. 264]) [11].

Many studies show a high prevalence of people with limited health literacy skills, with as evident risk groups the elderly and people with a lower socio-economic status. For example, the European Health Literacy Survey (HLS-EU), conducted among 8000 people in eight European countries, indicated that approximately 47% had limited (i.e. insufficient or weak) health literacy skills [1]. Although these skill levels showed large variation across the eight countries, ranging from 29 to 62% [1], the study reported that on average at least one out of ten people (12%) showed insufficient health literacy [1].

Low health literacy levels have been found to be related to a range of poorer health outcomes and greater use of health services, and as such these consequences have their impact on the provision of health care. First, Sorensen et al. (2015) [1] found a higher prevalence of low health literacy among people who reported poorer self-assessed health status, more than one long-term illness and more doctor visits. Berkman et al. (2011) [6] found a consistent relation between low health literacy and higher rates of hospitalisations and emergency care and lower use of preventive services. For older persons low health literacy also was associated with poorer overall health status and higher

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mortality rates. And Panagioti et al. (2018) [9] found that low health literacy was associated with a poorer quality of life of older adults in the physical, psychological, social and environmental domains and the level of quality of life decreased over twelve months.

Several factors have been identified that can explain the association between low health literacy and poorer health outcomes. For instance, Van der Heide et al. (2015) [5] found that higher functional, interactive and critical health literacy scores were associated with a higher perceived ability to perform self-management related tasks, organize care and interact with health care providers. Berkman et al. (2011) [6] found that knowledge, patient self-efficacy, norms and stigma may mediate the relationship of health literacy and for example adherence and diabetes control. Social support and characteristics of the health care system may moderate the relationship between health literacy and both adherence and blood pressure control.

For the coming decades in the European Union (EU) the life expectancy as well as the share of the older people in the population are expected to increase [16, 17]. As a consequence, the variety of health problems common in older people (such as cancer, strokes and various mental health disorders) is expected to increase, as well as the complexity of health problems such as having several comorbidities and taking various drugs with potentially interacting side-effects [16, 17]. This increasing number of people with comorbidities makes health care delivery more complex, and increases the need for organization of multidisciplinary care for patients both within and outside hospitals. Recommendations are that countries, health and welfare systems need to adapt in order to better respond to the impact of the ageing populations [16, 17]. For example it is recommended that health systems should become more age-friendly through active health promotion and disease prevention (for older people and across the life course), enabling better self-care, ensuring capacities of health services, improving coordination of care and management of hospital admissions and discharges, and addressing the ageing of the health workforce. In recent years, the focus on health literacy has expanded to include not only the individual abilities of people but also the health literacy responsiveness of health care organizations. Research has shown that the individual health literacy skills interact with the demands placed upon people by the health care system: on the one side the individual abilities of people can be too limited to engage with the health system, but on the other side these demands can be already too complex for the level of skills required [8, 12–14]. These demands

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relate, for example, to: information that is too complex to understand, expected participation in treatment, health systems which are complicated to access and navigate, and fragmentation of treatment in cases of multi-morbidity of chronic diseases [16–18]. In this context has emerged a concept of health literate care organizations as defined by Brach, et al. (2012, p. 1) [14]: “Health

care organizations that make it easier for people to navigate, understand and use information and services”.

To summarize, health literacy related problems can have a negative influence on the effectiveness of health promotion and treatment provided by health professionals, leading in turn to increasing inequality, and to poorer quality of life and health outcomes [1, 6, 9]. When these needs of people are not addressed, their health literacy related problems will continue to challenge the quality of health care services and patient-safety [13, 14]. Population trends, such as the ageing population in Europe and the increase of life-style related chronic diseases, make it more important to invest in the effectiveness of prevention and health care [16, 17]. This includes making health literacy an important priority to be addressed by health care organizations and professionals.

WAYS TO INTERVENE IN HEALTH LITERACY

Particularly in Europe, research on effective health literacy interventions is still scarce [19]. Health literacy intervention research has focused mainly on improving patient outcomes and less on investigating determinants and improving outcomes at professional and organizational levels [12, 19].

Several studies of the concept of health literacy have clearly identified associations between determinants at various levels and health outcomes thereby indicating the need to address health literacy at different levels [8, 20, 21]. Sorensen et al. (2012) [8] suggest to conceive health literacy with regard to health care, disease prevention and health promotion, going from an individual to a population level, whereas Parker (2009) [22] points to the need to reinforce individual health literacy, responding to low health literacy and reducing the demands. Paasche and Orlow (2007) [21] indicate to mitigate health literacy by addressing patient and system factors in the utilization of health care, in provider-patient interaction and in factors influencing self-care of patients.

The European project “Intervention Research on Health Literacy among the Ageing population” (IROHLA) investigated ways to improve health literacy

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outcomes, as using interventions with a comprehensive approach to address problems in several domains [19, 20]. Building on the models such as developed by Sorensen et al. (2012) [8], Parker [22], and Paasche and Orlow (2007) [21], the IROHLA project yielded a comprehensive framework to intervene on low health literacy [20], based on a multimethod approach (a literature review, an online expert consultation, and two consensus meetings with consortium members). The main actors in this intervention model are the individual and the health professional [20], who both belong to larger social contexts. These contexts can be social networks and communities for individual persons, and health care systems for health professionals. The model shows how the interaction between individuals and health professionals (both operating within their own contexts) affects health literacy outcomes and healthy ageing, via intermediate outcomes like health behaviours, adherence, and access to care.

According to Geboers, et al. (2018, p. 7) [20], health literacy outcomes can improve when interventions address (combinations of) the following five factors:

1. “The individual with low health literacy, via empowering interventions (e.g.,

person-centred capacity building and self-management)” [20].

2. “The context of the individual, via interventions that strengthen the social support

systems (e.g., family, peers, caregivers, communities)” [20].

3. “The interaction between individual characteristics and the demands of the health

system, via interventions to improve communication between individuals and health professionals” [20].

4. “Health professionals, via interventions aimed at improving their health literacy

capacities (e.g., recognizing health literacy related problems, communication skills)” [20].

5. “Improving communication and accessibility of health systems, via interventions

aimed at reducing barriers to access and policies to improve quality of care or patient safety” [20].

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Figure 1. Final version of the IROHLA health literacy intervention model [20]

Overall, the IROHLA-project focused on comprehensive interventions to improve health literacy skills of older adults, as specified in Figure 1. This thesis focuses on the right side of the model, with the aim to investigate how health professionals and health care organizations can improve communication and provision of care to patients with limited health literacy. These target groups include both older adults and other vulnerable groups of patients with limited health literacy. In the section below we outline the role of health professionals and their health literacy competencies. In the section after that we focus on health care organizations and ways to enhance access to health care, including removal of communication barriers.

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HEALTH PROFESSIONALS: CHALLENGES, INTERVENTIONS AND

PRIORITIES FOR RESEARCH

Challenge: Inadequate competencies to address low health literacy

Health professionals need specific health literacy competencies in order to address the needs of people with limited health literacy and enhance person-centred care [23–25]. As specified in the health literacy intervention model [20], professionals can mitigate health literacy related problems by adapting communication and information to make it easier for their patients to cope with these problems. They also can empower patients by strengthening their skills in functional, interactive, and critical health literacy. However, many health professionals may have inadequate mastery of these competencies [23, 24]. Such insufficient competencies can be reflected in limited awareness of health literacy, limited knowledge of how to adequately identify limited health literacy (i.e., not to overestimate health literacy levels), problems in communicating with people with low health literacy, and poor adherence to treatment [23, 24, 26, 27]. Because health literacy problems have only recently become evident, professionals may still be unaware of them [23, 24, 26, 27]. Although health professionals may make informal attempts to adapt to the needs of vulnerable target groups, such as older adults or people with lower educational levels [28], addressing health literacy problems remains complex and requires a multi-faceted approach [20]. One reason for insufficient development of competencies of professionals could be a lack of adequate training [26, 29]. However, it also becomes more difficult for professionals to address problems and develop competencies if health literacy is not listed as a priority within the context of their team or organization, especially when time and allocated resources are limited [12, 30].

Potential of training in building competencies

Training and education have proven effective in building the competencies of health professionals, including the development of knowledge, attitudes, and skills [31]. Training was found to improve physicians’ communication outcomes, and patients’ adherence to treatment [32]. The effectiveness of training is enhanced by careful attention to its design, strategies to promote learning during the training, and its practical application by participants [31, 33, 34]. A needs-analysis is important to ensure an effective training-design, to align the training with the needs of participants, and with job related tasks,

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organizations, and leadership involvement [31]. The promotion of a learning orientation during the training is essential in order to stimulate motivation and self-efficacy among participants. Effective instructional principles include interactive learning strategies that offer opportunities to practice in simulated situations and promote self-regulation [31, 33, 34]. To enhance transfer of training to practice, professionals should experience support from a supervisor, who can create opportunities for learning and reflection on the job, and have access to tools with background information [31].

Interventions and research priorities

Evidence is scarce concerning the best ways to develop and evaluate comprehensive, effective training interventions for health professionals and undergraduates. Research suggests that health literacy training contributes to increased health literacy knowledge and awareness of problems, and promotes comprehensible communication with patients [34, 35]. Unfortunately, there is a lack of comprehensive health literacy training interventions and education for (future) health professionals; existing training-interventions seldom target broader health literacy competencies, like enabling patients to understand information, and empowering them by strengthening their interactive and critical health literacy skills [10, 11, 36]. Development of such competencies can enhance the autonomy, participation, and self-management of patients; the quality of person centred care, and of health promotion; medication adherence; and the level of health outcomes [19, 20, 37–39]. This may in turn facilitate management of the increasing demands on health care [13, 16].

Evidence is also limited regarding the effects of health literacy training interventions, as only few studies have as yet used control conditions, assessed long-term outcomes, and examined the effects of training on patient-related outcomes [35]. Moreover, as most research on health literacy training interventions is carried out in the United States, evidence is lacking regarding the application of training in various European countries [34, 35]. Health care education has begun to provide health literacy training, but to date this is not structurally integrated in curricula, and wide variation exists in the content, teaching methods, and time assigned to training [29, 40, 41].

To summarize, we need effective comprehensive training interventions for professionals to mitigate the impact of low health literacy on health outcomes, and to increase the health literacy skills and empowerment of patients. In this thesis, we have therefore developed a comprehensive training to strengthen

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functional, interactive, and critical health literacy (Chapter 2). We have evaluated the effectiveness of this training in a multi-centre pre-post intervention study among health professionals from three European countries (Chapter 3), and in an RCT among undergraduate medical students (Chapter 4).

Health care organizations: challenges, interventions and priorities

for research

People with limited health literacy often find it hard to navigate through health care organizations, and can be overwhelmed with information which they find difficult to understand [2–4]. The demands of these organizations can thus worsen health literacy related problems if their services are not aligned with the individual abilities of people [13]. Such demands contribute to health inequality among patients, and are associated with a higher rate of hospitalizations, increased use of emergency care, reduced patient safety and quality of care, and higher health care costs [6].

Brach, et al. (2012, p. 1) [14] stated that: “Health literate health care organizations

can make it easier for people to navigate, understand, and use information and services”.

Research suggests a systems approach as a promising route to reduce health care related demands [13, 14]. Several frameworks have specified domains to address organizational health literacy at the levels of patients (e.g. navigation, oral- and written communication), professionals (e.g. building of competencies and health literacy practices), and organizations (e.g. leadership and culture, organizational policies and structures) [14, 18, 42, 43].

Organizational Health Literacy (OHL)-interventions have the potential to reduce barriers for people with low health literacy in health care settings [4, 44–46]. Such interventions involve assessment of problems with information and communication, as well as the delivery of interventions to achieve changes at the level of professionals and organizations. OHL-interventions can involve multiple components: to assess the integration of health literacy in the organizational strategy, culture and policies, to assess the quality and comprehensibility of written and digital information, improve communication between patients and health professionals, and facilitate physical navigation through the healthcare setting [4, 46–48]. Several studies reported positive experiences with OHL-interventions, mentioning, for example, greater health literacy awareness and somewhat improved comprehensibility of information [4, 48–51]. However, two literature reviews also reported barriers during implementation, and concluded that organizational change was difficult to

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achieve [18, 52]. According to these reviews, although OHL-interventions can help to overcome health literacy related problems and inequality, conclusive evidence is lacking regarding the extent to which these interventions lead to sustainable changes in health care systems [18, 52].

To summarize, studies have shown the urgency of a systems approach to reduce health literacy related demands, but more insight is needed regarding implementation processes and factors that affect the impact of OHL-interventions [18, 52, 53]. In this thesis, we have therefore reviewed the evidence regarding OHL-interventions (Chapter 5), and assessed their implementation and longer-term impact in health care settings (Chapter 6).

The context of the research of this thesis: the IROHLA project

The studies described in this thesis were conducted in the context of the European research project IROHLA, which stands for: “Intervention Research on Health Literacy among the Ageing population” (www.irohla.eu). The central aim of this project was to improve understanding of health literacy, as well as health literacy related outcomes for older adults in various contexts across European member states. The project ran from December 2012 until November 2015, with a consortium of 22 European partners across 9 countries. The IROHLA project focused on two main deliverables. First, an extensive literature was conducted which informed a comprehensive health literacy intervention model which would outline directions how to address the needs of older adults, health professionals, and organizations concerning health literacy interventions. The resulting model is presented in section 1.3. Second, 20 evidence-based interventions were selected and validated in a series of pilot studies. Regarding this thesis specifically, the pilot studies on the health literacy communication training (Chapter 2) and the empirical study on OHL-interventions (chapter 6) were conducted as part of the IROHLA-project, in order to validate two of the evidence-based interventions that IROHLA had identified. The two other studies on the health literacy training (Chapters 3 and 4) and the scoping review on OHL-interventions (Chapter 5) built on the results of IROHLA, but have been performed after finishing that project. The results of IROHLA were translated into evidence-based guidelines for policy and practice for European member states and stakeholders. The Health Literacy Center Europe (HLCE) was developed based on the results of IROHLA, and can be accessed via http://healthliteracycentre.eu.

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Aims of this thesis

The main aim of this thesis is to assess how health care professionals and organizations can improve communication with and provision of healthcare to people with limited health literacy. This translates to the following specific aims per chapter:

- To develop and pilot test a comprehensive health literacy communication training for health professionals in Italy, Ireland, and the Netherlands (Chapter 2).

- To evaluate whether: (1) a comprehensive health literacy training increased self-rated competencies of health professionals to address health literacy related problems and support the development of people’s autonomy and self-management abilities, after training and 6-12 weeks later; (2) professionals were satisfied with the training; (3) outcomes differed for the three participating European countries (Chapter 3).

- To assess whether this comprehensive Health Literacy Medical Consultation Skills (MCS)-training increased the health literacy competencies of under-graduate medical students in a Randomized Controlled Trial (RCT), with a waiting list condition (Chapter 4).

- To summarize the evidence on: (1) the outcomes of OHL-interventions on organizational, professional and patient level; (2) the factors and strategies that influence the implementation and outcomes of OHL-interventions (Chapter 5).

- To assess the implementation fidelity, moderators (barriers and facilitators), and long-term impact of OHL-interventions in hospitals in Ireland and the Netherlands (Chapter 6).

Overview of this thesis

This thesis is based on five studies, each presented in a separate chapter. An overview of the studies, including their design, is provided in Table 1. Two comprehensive interventions were investigated among health care professionals and organizations. The studies focused both on further development of interventions, and assessment of their effects. The interventions included a health literacy communication training to address the competencies of health professionals and OHL-interventions in order to bring about changes in organizations.

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Table 1. Overview of studies on two comprehensive approaches, one addressing health care professionals and one addressing organizations.

Health care professionals Health care organizations

Summary and further development of interventions

Professionals:

(Ch. 2) mixed methods study to develop and pilot a health literacy communication training

Organizations:

(Ch. 5) scoping review on OHL- interventions.

Effects of

interventions Professionals:

To assess the effect of health literacy communication training on competency of:

(Ch. 3) Multicentre pre-post study among health care professionals (Ch. 4) RCT among medical students

Organizations:

(Ch. 6) mixed methods study to assess longer-term effect of OHL-interventions.

(Potential) impact on people with limited health literacy

Chapter 2 describes a mixed-method study conducted to develop and pilot test a comprehensive health literacy communication training for health professionals in Italy, Ireland, and the Netherlands. The mixed methods included a literature review, focus group discussions with health professionals, and a pre-post questionnaire. Chapter 3 describes the results of a study, using a multi-centre pre-post design, to assess whether comprehensive training increased the health literacy competencies of health professionals. Chapter 4 reports how comprehensive training affected the health literacy competencies of undergraduate medical students in an RCT, with waiting list condition. Chapter 5 describes findings of a scoping review of organizational health literacy interventions: first, we assessed the evidence related to the outcomes of OHL-interventions at organizational, professional, and patient levels; second, we unravelled factors and mechanisms influencing implementation and outcomes of OHL-interventions. Chapter 6 describes the results of a mixed method study to assess the long-term implementation fidelity, moderators (facilitators and barriers), and impact of OHL-interventions in Irish and Dutch health care organizations. Finally, chapter 7 presents and discusses the main results of the various studies in a broader context. We also address methodological considerations, describe implications for theory and practice, and outline directions for future research.

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