Review articleA scoping review of the literature on benefits and challenges of participating in patient education programs aimed at promoting self-management for people living with chronic illness
Introduction
An increasing number of people are living with chronic illness, much due to longer life expectancy and improvements in medical treatment [1]. People whose life are affected by chronic conditions play a key role in taking care for themselves, and the self-management of chronic illness can be demanding [2], [3]. They must face medical management of their condition, create and maintain new meaningful life roles regarding jobs, family and friends; and cope with the emotions of having a chronic condition [4]. The consequences of all the daily choices a person with chronic illness has to take in managing his or hers condition can affect health negatively [5].
In accordance with the pioneering work by Bodenheimer [2] and Lorig [3], self-management education focuses on skills the participants can use to identify and address problems related to living with a chronic illness. Self-management education programs are based on the view that greater confidence in the participant’s capacity to make life-improving changes yields better clinical and other outcomes. There are a wide range of different types of self-management education programs. They vary in terms of content, form and how lay participants are involved in planning and carrying out the programs, often described as complex interventions [6], [7]. However, despite long term focus on strengthening user involvement in developing health care services, this is not a common practice within the health care system [8], [9]. Consequently, self-management education programs are most often initiated and carried out by health care professionals without involvement of lay participants [5], [7], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19].
Overall, the aim of self-management education programs is to enable the participants to understand the illness process, acquire skills related to medical management, as well as to provide education on how to live a complete life with illness. Several self-management education programs (e.g. American Chronic Disease Management Program, Expert Patient Programme in the United Kingdom and Learning and Mastery Courses in Norway) are based on the ideal that professional knowledge and patient experience are equally important, implying that health care professionals and lay participants cooperate in planning and carrying out the programs [20].
There is some evidence from a few systematic reviews of the literature that self-management education programs may improve knowledge of illness, health related quality of life and some psychosocial areas [5], [7], [10], [11], [12], [13], [14], [15], [16], [17], [18], [19]. Most of the programs in these reviews had not involved lay participants in planning or carrying out the program. In addition, the interpretation of the findings is limited by heterogeneity of studies, in terms of population studied, type and duration of the programs, variety of outcomes measured and differences in timing of assessment. To date, no review has addressed the full scope of studies that have investigated different aspects of what participants have experienced and reported as beneficial and challenging in co-created patient education programs aimed at promoting self-management.
Therefore, the aim of this scoping review is to give a comprehensive overview of benefits and challenges from participating in group based patient education programs co-created and carried out by health care professionals and lay participants, aimed at promoting self-management for people living with chronic illness.
More specifically, the following questions are addressed:
- 1.
What study aims, design, measures and outcomes are described in the literature?
- 2.
Which type of patient education programs are described in the literature (aim, target groups, settings, modules and involvement of lay participants)?
- 3.
What benefits and challenges are associated with participation in the programs from the perspective of the participants, as reported in the literature?
Section snippets
Methods
Due to the relative infancy of research on different aspects of what participants in patient education programs have experienced and reported as beneficial and challenging, the research questions were best answered by evidence from a range of data sources, and a scoping review was considered appropriate. Scoping reviews “aim to rapidly identify the key concepts underpinning a research area and the main sources and types of evidence available, and can be undertaken as stand alone projects in
Results
Results are presented under the following headings: characteristics of the studies, characteristics of the self-management patient education programs, benefits and challenges.
Discussion
This scoping review, based on 47 studies published between 2008 and 2015, is to our knowledge the first comprehensive review that include studies that have investigated benefits and challenges from participating in group based patient education programs, co-created and carried out by health care professionals and lay participants for people who are living with chronic illness. The studies were mostly carried out in developed countries throughout Europa and the United States of America. There
Acknowledgements
This work was funded by Norwegian National Advisory Unit on Learning and Mastery in Health, Oslo University Hospital, Norway. We would like to thank all our colleagues for daily support in this work, with special thanks to Andrè Vågan for reading abstracts and Ann Britt Sandvin Olsson for reading and giving us feedback on the manuscript. Thanks to Bente Schjødt-Osmo for quality assurance of literature searches and Margaret Forbes for language editing.
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