Addressing challenges and needs in patient education targeting hardly reached patients with chronic diseases.

Some patients do not benefit from participation in patient education due to reasons related to disease burden, literacy, and socioeconomic challenges. In this communication, we address more specifically both the challenges that these hardly reached patients face in relation to patient education programs and the challenges educators face when conducting patient education with hardly reached patients. We define principles for the format and content of dialogue tools to better support this patient group within the population of individuals with diabetes.

INTRODUCTION

For people with chronic diseases, patient education is critical to developing successful health behavior changes.[1] However, some people are “hardly reached” by patient education programs: Those with lower educational and income levels who experience severe co-morbidity or disabilities, few resources, low health literacy, weak social networks, or sociocultural problems.[23] They may not be offered participation, fail to attend, or attend without gaining the benefit.[4] Consequently, special attention must be paid to both the recruitment process and program format and content. This report focuses on the challenges, wishes, and needs of hardly reached people with diabetes for patient education program format and content.

METHODS

The results presented here were obtained through in-depth interviews and workshops with nine patients with diabetes (PWD) who were characterized as hardly reached by educators and five workshops with more than 20 educators engaged in patient education. The results are part of a larger study with the purpose of developing and testing dialogue tools targeting hardly reached patients with chronic diseases and establishing a competence development concept for educators engaged in patient education. The study was performed using design thinking methodology.[5]

During interviews and workshops with PWDs, their challenges, wishes, and needs in terms of patient education pedagogical approaches and formats were explored. Three of five workshops with educators primarily focused on the characteristics and needs of hardly reached patients from the educators’ perspectives. One workshop more specifically investigated educators’ challenges in relation to hardly reached patients and 1 2-day workshop encompassed exploration of design principles and ideation for development of dialogue tools targeting hardly reached patients.

All interviews and workshops were observed and video-recorded. Data collection was highly user-focused, promoted by the use of “probes” to actively engage participants and explore their preferences for different kinds of dialog tools representing various learning styles.[6] Data collection, analysis, and synthesis were framed by the “The Balancing Person” and “Health Education Juggler” models.[78]

RESULTS

To some extent, the challenges of hardly reached patients with respect to patient education fit the categories of The Balancing Person model: Lowered bar related to practical limitations imposed by living with chronic illness, changeable moods related to emotional changes, bodily infirmities related to negative physical changes, and challenging relations related to social changes arising from the limitations of chronic illness. However, this patient group also dealt with challenges that seemed to go beyond diabetes and other chronic diseases and might instead relate more generally to childhood and living conditions. These additional challenges constitute preconditions, which can limit participation in and obtaining a benefit from typical patient education programs [Table 1]. In addition, preconditions were linked to certain behavioral characteristics that educators often find difficult to handle [Table 1].

Table 1

Preconditions and behaviour characteristics related to hardly reached patients with chronic diseases

These data formed the basis for further work in developing the format and content of dialog tools targeting hardly reached patients with chronic diseases in patient education. A 2-day workshop comprised exploration of design principles and ideation for prototype development. Following the workshop, the data were analyzed and synthesized into design principles and themes for dialog tools to use with hardly reached patients [Table 2].

Table 2

Design principles and themes for dialogue tools to use with hardly reached patients

The challenges for educators in relation to hardly reached patients were explored, analyzed and synthesized using the Health Education Juggler model as a framework [Table 3]. The recommended focus for competence development of educators in terms of the roles in the model also appears in Table 3. Based on the design principles, the challenges of the educators and prototype testing, a toolkit of ten dialogue tools and a guide for educators were developed. Furthermore, the health education concepts of dialogue and participation and former developed tools for patient education inspired development of the new toolkit.[9] The toolkit is presently undergoing a feasibility study involving 76 educators in municipal settings in Denmark. The 76 educators participated in a competence development course lasting a day and a half, which qualified them for participation in the feasibility study. The course included presentation of and training in use of selected dialogue tools and a story-dialogue workshop for interactive learning from experiences among course participants.[10]

Table 3

Challenges and recommended competence development for educators

CONCLUSION

Data collection for the feasibility study comprises a web-based questionnaire for educators and seven observations followed by interviews of a sample of participating patients and educators. The results will indicate if the intended function of the dialog tools was achieved and if educators were able to integrate the tools into education programs. The interviews will also reveal more specific experiences of patients and educators with the tools. Based on the results, the toolkit and guide will be updated and offered for general use in Denmark. Future research related to the toolkit should include a larger effect study. In addition, establishing competence development among educators is crucially important to meeting the needs of hardly reached patients with chronic disease.