The growing research field of patient education and learning: The significance of a Nordic network

Abstract

The research field of patient learning and patient education is growing due to the high prevalence of people living with lifelong disease and illness. The aim of the present article is to argue for and describe the building of a Nordic Network for Patient Education and Learning. The article describes the Network and the activities, theoretical framework and ongoing research within the Network. If patients’ voices are to be heard within healthcare settings, patient learning and patient education are of the utmost importance. Furthermore, it is essential to share experiences from the research we have conducted and are currently carrying out with nurses in Nordic countries as well as around the world.

Introduction

The changing worldwide disease panorama, increasing prevalence of chronic diseases and more elderly persons with complex health problems entail great demands for (what often is described as) effective health care, good evidence-based nursing care and patient education.^1,2 Since the beginning of 2000, the evidence-based care movement, followed some years later by patient safety, has established the premises for the formation and organization of patient education.^3,4 Another recent movement of significance is ethics/bioethics related to patient education. ⁴ These movements inevitably influence ways of thinking about how patient education activities are accomplished. Often-used keywords related to the development and maintenance of (effective) patient education healthcare practices are patient self-care or self-management, the use of structured education programmes, ⁵ skilled educators and supportive environments/cultures. ⁶ Use of valid outcome measures or questionnaires is another aspect indicating the significance of knowing how to measure the effects of patient education.^7,8 Thus, there are a variety of demands that concern the nurse as an enabler of patient learning and patient education and that are part of professional nursing practice. ⁹ Given the demands and challenges described above, there is a need for networking arenas both on the Nordic and international level. The aim of the present article is therefore to argue for and describe the building of the Nordic Network for Patient Education and Learning.

Looking at the history of research in this area, different patient education and learning studies can be identified. On the one hand, there are descriptive studies of patients’ understanding/reasoning and, on the other, there are explanatory and randomized controlled studies on behaviour change measured as possible outcomes. This diversity in epistemological perspectives indicates the multi-paradigmatic nature of the research field.

We are now witnessing an increasing interest in practice-relevant research. Terms such as research usability, ¹⁰ utilization, ¹¹ involvement of practitioners and users ¹² and improvement of healthcare practice ¹³ are often used in relation to healthcare on the political and scientific agenda. As pointed out above, this complex and changing professional patient education and learning practice reveals the need for network arenas for discussing how we can understand different positioning’s and how we can design research that is relevant to practice.

The building of a Nordic Network

As a consequence of the networking idea, ‘The State of Science of Patient Education and Learning’ conference was held at the University of Gothenburg, Sweden, in February 2011. The theme for the conference encompassed three different focuses: 1) outcome measures in patient education and learning, 2) self-care management, pedagogical ethical issues and challenges in chronic illness, and 3) patient learning in a media society. The conference highlighted the need for valid measures against the background of ethical challenges and the fact that patient learning is part of and mirrors our postindustrial information society. As a result of the conference, a Nordic Network for Patient Education and Learning was established in 2012. The aims of the Network are to:

Develop knowledge about patient learning processes in order to promote/enable health and well-being;

Follow knowledge development within the field of patient education and learning;

Identify knowledge gaps within the field;

Disseminate knowledge within the field;

Create networking arenas for different research groups within the field.

A workshop, focused on the concept of ‘Capability’, was held in October 2013. In the workshop, Amartya Sen and Martha Nussbaum’s ¹⁴ as well as Paul Ricoeur’s ¹⁵ capability approaches were discussed to explore how such approaches can be used in patient education and learning. The workshop day included an introductory presentation, a group discussion and planning for future activities.

In June 2014, at the second European Regional Conference, Sigma Theta Tau International, the Network group held a workshop entitled ‘Exploration of the concept of “Capability” – an approach for patient education and learning?’ We have received several emails from international participants (nurses) who wish to collaborate with us within the framework of capability approaches.

Selected examples of patient education research areas

Patient education and learning are research fields in strong development in all Nordic countries. In the following, we describe some Swedish examples of ongoing projects to point out both the methodological and theoretical challenges faced in recent patient education practice research. All of the projects presented have received ethical approval. Because we do not present the results from the research, we cannot identify any ethical dilemmas in the present article.

Instrument development

Nobel Prize recipients Amartya Sen and Martha Nussbaum ¹⁴ have stressed a new theoretical paradigm: the ‘capability approach’. This approach is not interested in ordinary well-being, but rather in the opportunities available to each person.^14,16 The approach provides a framework in which the individual and his/her health opportunities are at the centre of the analysis. To strengthen the patient perspective, care providers need to understand and address how the individual’s quality of life is affected by, for example, diabetes. In Sweden, there is a lack of systematic data on how diabetes and its treatment affect everyday life, and on how patients experience self-management as well as diabetes care, e.g. the patient education provided. The National Diabetes Register (NDR), ¹⁷ one of the national quality registers in Sweden, has been assigned the task of including diabetes-specific health measures and evaluation of care outcomes, so-called patient-reported outcome measures (PROMs). ¹⁸ A new questionnaire is needed, as there is no instrument that meets the requirements of a comprehensive diabetes-specific measure based on the capability approach. The study is called: ‘Evaluating the patient perspective on diabetes care: development of the Diabetes Capabilities Questionnaire, a patient-reported outcome measure’.

Interventions and evaluation

Furthermore, there is no evidence- and theory-based educational model designed for patients with type 1 diabetes. Acceptance and commitment therapy (ACT)^19,20 was chosen because it is based on the same ontological perspective as the capability approach, where is it assumed that all people have the potential to improve their quality of life. ²⁰ ACT is a theoretically and empirically developed person-centred approach, based on the philosophy of science and modern learning theory, mainly relational frame theory. ²¹ The study is called: ‘Implementation and evaluation of a theory-based educational model within diabetes care’.

The aim with the next study (The PINCORE) is to investigate whether person-centred information and communication for patients diagnosed with colorectal cancer (CRC) and undergoing elective surgery can improve their health-related quality of life. The intervention models, intended to enable preparedness for surgery, discharge and recovery following surgery, consist of tailored patient education and information material, dialogue format communication and documentation in the patient records. The intervention is ongoing at three hospitals. The results of the intervention will be used to develop tailored information material and person-centred communication packages for CRC sub-groups. Some studies used as a basis for development of the intervention have already been published.^22–24

The third study focused on how people learn to live with long-term illnesses and how learning can be supported. Based on patient experiences, the learning process involved in living with long-term illness, a didactic model, called ‘The challenge – to take control of one’s life with long-term illness’, has been established. ²⁵ The model is grounded in a life-world perspective, which emphasizes the individual’s experience as the basis for learning. In this model, turning points in learning and the need for deep reflection are highlighted. The model is implemented and evaluated in different care contexts. Long-term musculoskeletal pain is a major health problem that greatly impacts quality of life among older adults. Many lack professional guidance and must learn on their own how to live with pain. ²⁶ Based on the didactic method described above, a method called ‘Reflective STRENGTH-giving Dialogue’ ²⁷ has been developed and tested in home-based healthcare.

The aim of the fourth study is to discover how a web-based education program can assist women with breast cancer who are undergoing curative treatment. The number of e-health communication tools used to search for healthcare information and patient education is increasing. While patient organizations provide reliable health-related knowledge, other sources spread opinion-based information, which could lead to dissemination of inaccurate knowledge on the Internet. The pedagogical and educational ideas of this study have been derived from the field of socio-cultural history of knowledge^28,29 and develop a kind of computer learning practice where knowledge is constructed in the encounter between the person, the computer and the teaching program. Learning can also be seen as autonomous, because the women themselves choose the content and frequency of learning from the program offerings. From a learning perspective, this means increased opportunities to process their own issues and to formulate questions that can later be posed to healthcare staff. In line with a sociocultural perspective, ²⁹ the computer constitutes a kind of mediating tool that is involved in the process of cognition.

Conclusions: How to proceed

In the context of learning and patient education, one important aspect of the capability approach is the ability of the individual nurse to establish a relationship based on humanity, respect and dignity.

In conclusion, we plan to continue working to create theory- and evidence-based models that are suitable for persons with different kinds of health problems. In describing a broad theoretical basis for patient education and learning for individuals with various illnesses, is it of the utmost importance that we share our experiences from past and ongoing research in order to make patients’ voices heard within healthcare settings.