Indian Journal of Endocrinology and Metabolism

BRIEF COMMUNICATION
Year
: 2015  |  Volume : 19  |  Issue : 2  |  Page : 292--295

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


Annemarie Reinhardt Varming1, Rikke Torenholt1, Birgitte Lund Møller2, Susanne Vestergaard3, Gitte Engelund4,  
1 Health Promotion Research, Steno Diabetes Center, Gentofte, Denmark
2 Health Department of Health Collaboration and Quality, Region of Southern Denmark, Vejle, Denmark
3 Research & Knowledge, Danish Diabetes Association, Odense, Denmark
4 Innocate, Kgs Lyngby, Denmark

Correspondence Address:
Annemarie Reinhardt Varming
Steno Diabetes Center A/S, Patient Education Research, Niels Steensens Vej 8, DK 2820-Gentofte
Denmark

Abstract

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.



How to cite this article:
Varming AR, Torenholt R, Møller BL, Vestergaard S, Engelund G. Addressing challenges and needs in patient education targeting hardly reached patients with chronic diseases.Indian J Endocr Metab 2015;19:292-295


How to cite this URL:
Varming AR, Torenholt R, Møller BL, Vestergaard S, Engelund G. Addressing challenges and needs in patient education targeting hardly reached patients with chronic diseases. Indian J Endocr Metab [serial online] 2015 [cited 2021 Sep 18 ];19:292-295
Available from: https://www.ijem.in/text.asp?2015/19/2/292/149324


Full Text

 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. [2],[3] 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. [7],[8]

 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}

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}

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}

 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.

 Acknowledgment



We wish to thank all the participants for their valuable contribution with regards to participation in workshops and interviews. We thank Jennifer Green, Caduceus Strategies, for editorial assistance.

References

1Jarvis J, Skinner TC, Carey ME, Davies MJ. How can structured self-management patient education improve outcomes in people with type 2 diabetes? Diabetes Obes Metab 2010;12:12-9.
2Freimuth VS, Mettger W. Is there a hard-to-reach audience? Public Health Rep 1990;105:232-8.
3Danish Health and Medication Authority. Forløbsprogrammer for kronisk sygdom. Generisk model og Forløbsprogram for diabetes. [Course programs for chronic disease. Generic model and Course Program for Diabetes]. Copenhagen; 2008.
4Johansen KS, Rasmussen PS, Christiansen AH. Hvem deltager og hvem deltager ikke i patientuddannelse. Evaluering af sygdomsspecifik patientuddannelse i Region Hovedstaden. KORA Det Nationale Institut for Kommuners og Regioners Analyse og Forskning. [Who participate and who do not participate in patient education. Evaluation of disease-specific patient education in the Capital Region of Denmark. Copenhagen: KORA The National Institute of Municipalities and Regions Analysis and Research]; 2012.
5Brown T, Wyatt J. Design thinking for social innovation. Stanford Soc Innov Rev 2010. Available from: http://www.ssireview.org/articles/entry/design_thinking_for_social_innovation. [Last accessed on 2014 Dec 19
6Mattelmäki T. Applying probes - From inspirational notes to collaborative insights. CoDesign 2005;1:83-102.
7Hansen UM, Engelund G, A Rogvi S, Willaing I. The Balancing Person: An innovative approach to person-centred education in chronic illness. Eur J Person Cent Care 2014;2:290-302.
8Engelund G, Hansen UM, Willaing I. ′The health education juggler′: Development of a model describing educator roles in participatory, group-based patient education. Health Educ 2014;114:398-412.
9Engelund G. In balance with chronic illness. Tools for Patient Education. 1 st ed. Gentofte, Denmark: Steno Health Promotion Center; 2011.
10Labonte R, Feather J, Hills M. A story/dialogue method for health promotion knowledge development and evaluation. Health Educ Res 1999;14:39-50.