Keywords

1 Background

Health literacy is a complex concept that requires undertaking research from different perspectives and diverse scientific fields. The understanding of diverse perspectives from healthcare providers and patients is vital to build and strengthen health literacy in the population (Rahja et al. 2018). Health literacy is acknowledged globally as important for people’s health and well-being, which is one of the UN’s Sustainable Development Goals (SDG 3). Health literacy was previously understood as individuals’ ability to read, understand, and apply health information to make healthcare-related decisions (WHO 2013). In 2020, organisational health literacy was also defined as being important. This is the degree to which organisations equitably enable individuals to find, understand, and use information and services in order to inform health-related decisions and actions for both themselves and others (CDC 2020).

The WHO (2013) emphasises that health literacy is both an asset and a form of social capital for individuals and communities. Communities can benefit from their members’ health literacy and also have a responsibility to empower people as citizens, members of the workforce, consumers, and patients, so that they can improve their health literacy and thus better make decisions about their health. It has been of concern for many years now that patients with limited health literacy often have difficulties in managing chronic diseases (Keller et al. 2008), lower rate of medication adherences (Berkman et al. 2011; Kripalani et al. 2006), increased emergency care use, and increased risk of hospitalisation (Berkman et al. 2011; Howard et al. 2005; DeWalt et al. 2007).

Countries all over the world have therefore long since recognised the impact of low health literacy on health systems, and considerable efforts are being made to address this. International collaboration, national policy, and legal regulations in this area are some of the steps being taken to reduce the risk of low health literacy (WHO 2013). Research has shown that increased emphasis should be placed on education and training of health professionals in order to improve the practice of health literacy screening and communication (Rahja et al. 2018). Knowledge about health literacy studied from different scientific perspectives is crucial for improving Good health and well-being (SDG 3), Gender equality (SDG 5), Reduced inequalities (SDG 10), and Sustainable cities and communities (SDG 11).

2 Qualitative Design

Health professionals who work with health literacy demand evidence-based knowledge at individual and system levels, together with the recognition that health literacy always has a cultural and contextual dimension. Qualitative research, therefore, is relevant when exploring people’s experiences with health literacy. Qualitative methods capture the perspective of the individual and their individuality and are used when little is known about a topic or phenomenon (Johnson and Christensen 2016). Qualitative research focuses on analysing the subjective meaning or the social production of issues, events, or practices by collecting data in the form of text or visual materials.

Qualitative inquiry studies interpret how human beings construct and attach meanings to their experiences and, interviews and observations reveal those meanings and their implications (Patton 2015). Qualitative inquiry can illuminate how any human phenomenon unfolds as it does and the effect on those who participate. Stories can be captured to understand people’s perspectives and experiences. Elucidating how systems function and their consequences for peoples’ lives is an important aspect of qualitative research and understanding contexts: how and why it matters are also vital. Revealing the intended and unintended consequences of change processes is very important. Qualitative inquiry gives the opportunity to make case comparisons to discover important patterns and themes across cases (Patton 2015). Despite challenges and controversies or criticisms that can arise, knowledge from qualitative research can make a real difference and can address many of the SDGs which aim to improve society and the world at large.

Qualitative design includes both methodology and method. Methodology deals with the underlying theoretical thoughts behind science and philosophical premises for distinct designs such as hermeneutics, phenomenology, narrative inquiry, and critical discourse analysis. Methods deal with specific procedures such as interviews, observations, visual material, and texts used to collect data. Distinct qualitative designs and their underlying thoughts and historical roots are presented in order to illustrate this.

3 The Use of Theory in Qualitative Research

As researchers, we have experienced the significance of using theory as an opportunity for making our underlying thoughts and choices visible. The theory is often presented in the background section of a paper and explains the phenomena that will be studied. Furthermore, broader theories often encompass theory which can be applied at distinctive levels, offering methodology, theory, methods, and study topics. Some theories have a clear political aspect, such as critical discourse analysis (Fairclough 1992).

Qualitative researchers may use theory in several ways. (1) It is used as a broad explanation of the phenomenon being studied, for example, a social constructivist approach might be used to study learning (Wenger 2004). The primary focus of this theory is learning as social participation (Wenger 2004). (2) Theoretical lenses or perspectives provide an overall approach for the research questions being posed. These lenses, in some designs, become a transformative perspective that shapes the types of research questions, inform how data are collected and analysed, and suggest a call for action (Creswell and Creswell 2018). (3) Qualitative theory may be the endpoint of a study (Glaser and Strauss 1967). Shaping theory is a process which necessitates many steps. First, the researcher decides how to collect data through, for example, interviews or observations. Researchers then ask participants open-ended questions or write fieldnotes. Third, the researcher analyses data in order to form patterns or themes. Finally, the researcher creates theories from the data and literature which has been appraised. Some qualitative studies, however, do not use any explicit theory, e.g. phenomenology. The aim is to build the essence of experience from participants (Patton 2015). Creswell and Creswell (2018) give some advice on the use of theory in qualitative research:

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    Decide if theory is to be used in the research.

  2. 2.

    Identify how the theory will be used, as a transformative advocacy lens, an up-front explanation, or as an end point.

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    Locate the theory early or at the end.

Most qualitative analyses start with an inductive approach which is a bottom-up perspective, while a deductive approach is a top-down perspective. Inductive analyses bring you from the specific to the general, while deductive analyses bring you from the general to the specific. Most qualitative analyses are inductive as well as deductive. The researcher often starts from the raw data to identify topics before returning to the raw data to see how the various main topics are corroborated by the material (Creswell and Creswell 2018).

4 Studying Health Literacy: A Range of Qualitative Designs

The qualitative designs presented in Table 3.1 give an overview of distinct designs that can be used in qualitative research to illuminate different dimensions of health literacy. We have chosen to present various designs that we have used in our own studies, and that are mostly used in studying health literacy. Other qualitative designs might have the potential to illuminate various aspects of the importance of health literacy.

Table 3.1 Major features of distinct qualitative designs
Full size table

4.1 Phenomenological Perspective

The purpose of a phenomenological approach is to illuminate the essence of peoples’ lived experiences related to a particular phenomenon (Patton 2015). Phenomenology is especially relevant when studying patients’ lived experiences with illness. This methodology will give insights into the patient’s lived experience of the illness and their health literacy. In the phenomenological tradition, rich and thick data are collected to give valuable insights when working on strengthening patients’ health literacy.

The world in which we live, and with which we have immediate familiarity and experience, is in phenomenology called the lifeworld (Husserl 1965). Husserl argues that knowledge has a validity regardless of when, and by whom, it is formulated. The world can be nothing else than the world as it appears in our consciousness. The concept, lifeworld, does not consider power relationships in society, i.e. social conflicts and conflicts of interest between diverse groups (Crossley 1996).

The phenomenological inquiry framework has developed over time and its key contributors are Schütz (1899–1959), Merleau-Ponty (1908–1961), Whitehead (1861–1947), and Giorgi (1931–). Patton points to the fact that, over time, phenomenology has become so widely embraced that its meaning has become unclear (Patton 2015). The key element of a phenomenological research study is that the researcher attempts to understand how people experience a phenomenon from each person’s own perspective. The aim is to enter the inner world of each participant in order to understand his or her perspective or experience (Johnson and Christensen 2016). This is a high ambition, and we question if this is possible to achieve.

Phenomenology might serve as a relevant research approach when studying patients’ experiences of treatment in critical and life-threatening situations. Torheim and Kvangarsnes (2014) explored patient experiences with chronic obstructive pulmonary disease exacerbation and mask treatment. The study created an understanding of patients’ vulnerability during interaction and involvement with health professionals in acute treatment of chronic obstructive pulmonary disease. This knowledge is important for health personnel when helping patients cope with mask treatment in a life-threatening situation.

Knowledge about patient experiences is important when facilitating individual learning processes. Uncovering the essence of the lived experience of illness and treatment in different phases is vital when planning, implementing, and assessing person-centred learning processes for good health and well-being.

4.2 Narrative Approach

Using a narrative approach is a way of gaining a greater understanding of patients’ experiences and may contribute to knowledge that can provide more effective care and treatment (Holloway and Freshwater 2007). The word ‘narrative’ comes from Latin ‘narrate’ which means to tell a story. A story usually features a series of events. A narrative approach to studying patients gives them both a clear voice and attributes them with significance. By highlighting patients’ own perceptions around participation, health professionals can gain a new understanding of the patient’s situation, and patients’, as well as relatives’ health literacy (Chase 2018).

Narrative analysis includes a theoretical direction that captures personal and human dimensions of experience over time which considers the relationship between individual experience and cultural context (Clandinin and Connelly 2000). Narrative analysis provides an alternative to the understanding of the individual as abstracted out of his or her context rather than being a part of it (Holloway and Freshwater 2007).

There are various understandings of what narrative research includes, and the definition of the word ‘narrative’ itself has changed over time. Chase (2018) describes the development from which narrative was exclusively used to illuminate the past and present, to inclusion of the future, in narrative presentations. A narrative approach is appropriate when studying health literacy in a clinical pathway. When including the future within a narrative, it can potentially provide an insight into how to improve health literacy for patients and their families.

The selection of informants for narrative research is often strategic: it aims to capture the complexity of health literacy. Shaping the narrative might be built on experiences not only from one patient but also from several (Brinkmann and Kvale 2015). When you have several informants, the interviews are presented as one narrative, which represents an interpretation of all the patients’ stories. The narrative is also created with the help of documents describing the context of the research, diaries, and information about the researcher’s role as a research tool.

In narrative analysis one searches for a plot, which is a pattern of developments in the stories. The plot may, for example, describe health literacy in distinct phases of a patient pathway (Holloway and Freshwater 2007; Patton 2015). Important topics in narrative research are (1) the theoretical framework on which the study is based, (2) the type of knowledge to which the personal narratives give us access (3) the ethical position the researcher holds in the presentation of data, and (4) the methods that should be used to produce narrative data (Thomas 2010). Explicitness about the underlying choices taken is important for the credibility of narrative research (Chase 2018).

During the last decade, narrative inquiry is moving towards theoretical and methodological maturity (Chase 2018). To elucidate the thoughts underpinning such a study, the reader should be provided with information that may furnish a deeper understanding of the findings and the opportunity to make their own judgement of the trustworthiness of the study (Patton 2015).

Narrative approaches have proven invaluable in illuminating both the patients’ and relatives’ experiences of health literacy (Tarberg et al. 2019; Bårdsgjerde et al. 2019). Family caregivers in palliative care have experienced low health literacy in that they were not prepared for the terminal phase of their beloved family members (Tarberg et al. 2019). Health literacy and patient participation differed throughout various phases of the myocardial infarction pathway (Bårdsgjerde et al. 2019). This study showed that health literacy needed to be improved on both individual and organisational levels. Narratives give the informants a clear voice and offer access to subjective experiences that can provide a deeper understanding of their health literacy. Chapter 9 is an example of how the narrative approach gives new knowledge on how the visually impaired experience education and learning from a lifespan perspective.

4.3 Hermeneutic Approach

Hermeneutics is the theory and methodology of interpretation. Etymologically, the word comes from the ancient Greek hermeneuein, which means ‘to express’, in the sense of conveying and speaking. The word is threefold: to express, to interpret, and to translate (Gulddal and Møller 1999).

Hermeneutics has developed since ancient times, and dialogue is held up as an ideal for understanding and knowledge development. Philosophers such as Schleiermacher (1758–1834), Dilthey (1833–1911), Heidegger (1889–1976), Gadamer (1900–2002), and sociologists such as Habermas (1929) and Ricoeur (1913–2005) have been central in the development of hermeneutics into a philosophy of understanding (Gulddal and Møller 1999). Hermeneutics is the most important theory of science in the humanities.

The hermeneutic circle is a key concept and refers to the idea that the understanding of a text is based on the understanding of each, distinct, individual part. Interpretation is a process that oscillates between parts and the overall context in which the part exists. Prejudice is part of the human horizon of understanding and is, as such, an important gateway to interpretation and understanding (Gadamer 1999). The challenge is to separate valid prejudices from those which are invalid. This must be examined in relation to how one previously looked at a case. The interpreter’s pre-understanding must be examined by time intervals, changed, and adjusted in the light of new experiences. The time interval often makes it possible to solve the critical questions of hermeneutics, the separation of the true prejudices that make us understand from the false ones that make us misunderstand (Gadamer 1999; Gulddal and Møller 1999).

Gadamer’s texts on understanding have later been criticised, nuanced, and problematised by, for instance, Habermas (1999). A hermeneutic understanding is developed by the interpreter listening to the text and asking questions in order to interpret the underlying meaning. The text must be interpreted in its historical and cultural context and read with empathy. The art is to bring out what is not present in the text (Marquard 1999).

Alvesson and Sköldberg (2009) emphasise the following underlying principles in hermeneutic research:

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    Interpretation should have a logical context.

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    Overview of the totality of the work.

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    Underlying problems must emerge.

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    All the questions that the text raises must be answered.

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    The questions must come from the text and not from the interpreter.

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    The text must be interpreted in a historical and cultural context.

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    The interpreter must respect what the author says.

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    The interpreter must respect established interpretations of text.

  9. 9.

    The interpretation must stimulate further thinking.

  10. 10.

    The interpretation can be transferred to other areas.

Different hermeneutic traditions may be perceived as being incompatible (Gilje 2019); however, various traditions can provide complementary understanding in interpreting the data. Different approaches can be united in a specific research project and benefit from each other. A hermeneutic approach was used in a study of children and adolescents’ mental health during the Covid-19 pandemic in Canada (Montreuil et al. 2022). Repercussions of social isolation were a central finding. The participants in the study experienced loneliness and a longing to be with their peers. Coping strategies reported were having a variety of hobbies, expressing their emotions, and accessing financial and material resources. The interviews were analysed following a narrative synthesis approach, through which the experiences were contrasted and contextualised to highlight relevant themes. The study emphasised the importance of supporting children’s and adolescents’ mental health during a pandemic. The study is relevant for clinical practice and policy improvement, in particular in finding means for social engagement whilst maintaining safety (Montreuil et al. 2022).

The above example gives important knowledge for providing good health and well-being for children during times of crises such as a pandemic. Hermeneutic design is relevant when we wish to interpret the complexity in the human dimensions. This is important knowledge when health professionals are planning comprehensive and health-literate learning processes that also include mental health.

4.4 Grounded Theory

Grounded theory can be considered both as a qualitative design and as a method for developing new and context-specific theories (Starrin 1996). The theory is a suitable method for studying social processes such as user participation and health literacy in health services (Foley and Timonen 2015; Charmaz et al. 2018).

Glaser and Strauss (1967) developed a systematic method containing both qualitative and quantitative elements that allow data to be moved to theory (induction) to create alternative theories. Such theories will be related to the context in which they are developed. The foundation of grounded theory is based on observations rather than on predefined analytical constructs, categories, or variables from already established theories. The theory emerges from a substantial field of research as documented by Starrin and Svensson in their work (1996). Prominent phases or concepts in grounded theory are (Willig 2013):

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    Categories (groupings of cases).

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    Coding (the categories are identified).

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    Constant comparative analysis (identification of similarities and dissimilarities between categories).

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    Negative case analysis (development of theory considering current evidence).

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    Theoretical sensitivity (from a descriptive to analytical level).

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    Theoretical sampling (collecting additional data based on categories that have emerged in previous phases of the analysis).

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    Theoretical saturation (samples and encodes data until new categories cease to apply).

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    Memo writing (written record containing the theory development).

Glaser and Strauss (1967) assumed that everyone could create their own theory, if it is based on real life, and they believed that everyone can be innovative in social research, as so-called science entrepreneurs.

Grounded theory has, for instance, been used in cardiovascular research (Dunn Margaritis & Anderson 2017). This study investigated patients’ and health personnel’s perspectives on how health literacy skills were developed in patients with cardiovascular disease or diabetes. The study revealed that social support, Internet searches, personalised instructional strategies, and self-directed learning were important. Social support was found to be a key factor in developing health literacy skills (Dunn et al. 2017). An article using grounded theory (Landstad et al. 2022) found that participating in peer-led self-help groups can assist with the transfer of learning to new environments, including increased work capacity.

Grounded theory has been used in many research projects to highlight health literacy at individual and organisational levels. Grounded theory is an appropriate design to use when we know very little about a phenomenon and prefer an inductive approach.

4.5 Social Constructivist Approach

Social constructivism points to the fact that the individual is socially constructed through interactions with others. This perspective is promising in research on health literacy. It has the potential to highlight the cultural dimension in developing health literacy at individual and organisational levels.

Social constructivism is a broad approach and is challenging to define. Howitt (2010) presents four characteristics of social constructivism:

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    Historical and cultural specificity of knowledge.

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    Critical position towards taken for granted knowledge.

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    Knowledge sustained by social interactions.

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    Knowledge and social interactions integrated.

A fundamental understanding in social constructivism is that all human cognition is socially constructed (Berger and Luckmann 2000; Mead et al. 2015). Knowledge is a result of the development of culture, and the historical and contemporary context of within which the individual is a part (Howell 2013). The various fields in social constructivism are rooted in pedagogy, sociology, linguistics, philosophy, and the social sciences. This interdisciplinary approach has gained significant importance in many academic environments and has contributed to theory development.

Patton (2015) has proposed the use of core elements of the social construction inquiry framework, some of which are of specific relevance when studying health literacy. Based on these, we have formulated areas important to illuminate in a social constructivist perspective. The significance of understanding multiple realities within, and between, groups of patients in order to facilitate different learning processes is crucial. Cultural competence is required in contact with different patient groups. Language and how a message is communicated is also important to study. Digitalisation of the healthcare sector will give patients different access to health services depending on digital competence. We have little knowledge about how the lack of digital competence affects people’s health. Research on how power differentials affect and shape social interactions and perceptions of health services may provide important knowledge for building equal access to health services.

A study from Southwest China shows that the digital health literacy level of community-dwelling older adults is relatively low, with the need to be improved urgently (Liu et al. 2022). The European Health Literacy Population Survey (2019–2021) indicates limited health literacy in large groups of the general population in all countries but to varying degrees depending on the country (WHO 2021). There were vulnerable sub-populations in all countries, for instance, senior citizens, low education, financial difficulties, low self-assessed social status, low self-assessed health status, and frequent user of healthcare services. There is a lack of knowledge about how people can develop digital health skills in order to maintain good health and well-being (SDG 3).

Social constructivism can give insight in vulnerable sub-population participation in digital learning processes in communities of practices (Wenger 2004). Social constructivism is focusing on learning as an inherently and social process that cannot be separated from the social context in which it happens. This perspective can give insight into how participating in communities of practices may lead to health-literate processes or outbound trajectories. Learning means participating in communities of practices in a way that the person becomes digitally health literate.

4.6 Critical Discourse Analysis

Critical discourse analysis aims at uncovering implicit power structures in texts by using linguistic analyses linked to the historical and social contexts of which the texts are a part. The aim of these analyses is to create change and contribute to democracy, freedom, and equality (Fairclough 1992, 2001).

This theoretical approach focuses on how language works in maintaining and change power relations in society (Fairclough 2001). Studies of language can reveal these processes and focus on how people can become more conscious of them, and more able to resist and change them.

By performing in-depth text analyses and considering the social and historical context in which the text is included, this approach allows one to emphasise how society’s hierarchies of power are created and reproduced through discursive practice.

Patient participation is intricately linked to health literacy and concerns the distribution of power between patients and health professionals (Thompson 2007). Critical discourse analysis may provide insights into how the patient’s right to participation is safeguarded in various levels and contexts. Globally, the right of patients to participate in treatment has been strengthened (WHO 2013). The WHO suggests that users should be involved in the shaping of all parts of the health service. It is important to study how legislation on patient participation and legislation on health literacy is implemented in clinical work both at a system level and in the formulation of national guidelines for treatment. Earlier research has shown disappointing results (Røsvik et al. 2010). Apart from very few exceptions, patients had not participated in developing the guidelines examined.

Critical discourse analysis is based on a discursive event, which is the use of language in a specific situation (Fairclough 1992). Analyses at three levels are carried out: (1) text analysis (for example, wording, sentence level, and modalities), (2) discursive practice (production of text, distribution processes, and how a text is consumed), and (3) discourse as social practice: ideology and hegemony (discourse is placed in an understanding of power at the system level).

Critical discourse analysis involves analysing the relationship between text, interaction, and context (Fairclough 1992). Several researchers have been inspired by linguist Fairclough when studying patient participation in clinical activities in acute and chronic diseases (Aasen et al. 2012a; Kvangarsnes et al. 2013). These studies show the benefit of combining text analysis and analysis of discursive practice with theoretical models of patient participation. The studies highlight ethical dilemmas in treatment in both acute and chronic situations. Linguistic analyses uncover power structures and lack of participation in health services (Aasen et al. 2012b; Kvangarsnes et al. 2013). Contradictions are uncovered between the rhetoric in health policy documents and the experiences of patients and health professionals with patient participation.

Empowering the patient to make good choices for their good health and well-being is emphasised internationally (WHO 2013). However, important hidden obstacles still exist. In such cases, critical discourse analyses may provide valuable insights for changing and building equity in access to health services.

Using critical discourse analysis can be useful for uncovering how health literacy is addressed at the micro, meso, and macro levels in health services. By connecting the various levels, it is possible to gain an increased understanding of the discourse on health literacy in society.

5 Data Collection in Qualitative Research on Health Literacy

Health literacy can be studied from the perspectives of patients, relatives, or health professionals. Research shows that patients and health professionals may experience health services differently (Sahlsten et al. 2007). There are various data collection methods for studying health literacy.

Interviews are often semi-structured or narrative. In semi-structured interviews, an interview guide with various topics one wishes to illuminate is used. A theoretical framework on health literacy can, for example, provide suggestions for themes in an interview guide. Knowledge of patient experiences may provide new insights for use in the development of health services and medical guidelines (Røsvik et al. 2010).

Health professionals’ experiences might be illuminated through focus groups, in order to acquire rich data. A homogeneous group is recommended because they have a common frame of reference for discussions (Krueger and Casey 2015). Experience has shown that homogeneous groups are suitable for producing complex experiences and ethical dilemmas in healthcare (Tritter and Landstad 2020). In heterogeneous groups, various positions, and different frames of reference, may hinder deeper communication of the phenomenon being studied (Tritter and Landstad 2020).

Observation could be another method employed for studying health literacy. Different observation methods are available: participatory, systematic, or video recording (Patton 2015). An ethical dilemma associated with the observation of patients, however, is that a patient being observed may find it stressful to have a researcher present during treatment.

Document and text analysis is a method that can be used to provide insight into how health professionals communicate with patients and relatives (Bratberg 2017). Table 3.1 presents examples of documents and texts which are relevant to such analysis.

Photovoice is a method that can be used to document and reflect the health literacy of diverse groups to add knowledge that is intended to create change (Wang and Burris 1997). The participants are given the task of documenting their situation with the help of visual narratives. Photovoice can be helpful in revealing how patients experience their situation.

6 Qualitative Design, Health Literacy, and Sustainable Development Goals

Qualitative design presents insights into humans’ experiences of health, illness, health literacy, and health services. This is important knowledge that can provide understanding as to what might facilitate, and what might hinder, attaining SDGs.

The study of different texts and political documents has the potential to reveal underlying and hidden power structures that can hinder empowering people and providing equity in society. Different qualitative designs provide opportunities for diverse types of knowledge and partly overlap in terms of their focus.

To study health literacy from either an individual level, a phenomenological perspective, narrative approach, or grounded theory may be a question of making an appropriate choice. Knowledge of any patient’s subjective experience of illness and their situation will be important for health professionals so that they can strengthen health literacy and adapt it to that individual’s needs. All these perspectives highlight the importance of the user’s voice and may additionally be used as a resource for eradicating poverty which is one of the most important sustainability goals (SDG1). To study patients’ clinical pathways from the perspective of patients and family caregivers may provide new insights for shaping sustainable health services for good health and well-being.

Social constructivism and hermeneutic approaches are relevant when studying health literacy in social settings, i.e. when seeking to explore how societal, historical, local, pragmatic, and other factors influence the construction or interpretation of knowledge about health literacy.

To study health literacy at an organisational level, a social constructivist and hermeneutic perspective will offer insight into interactions between health professionals and patients. Patients’ and users’ access to health services will be a key area to study when considering how to achieve relevant sustainability goals. A critical discourse analysis may uncover underlying power structures in communication between patients and the system, which may provide insights for building equality, which is also fundamental in attaining any relevant sustainability goals such as Good health and well-being (SDG 3), Gender equality (SDG 5), Reduced inequalities (SDG 10), and Sustainable cities and communities (SDG 11).