There exists, from the patients’ point-of-view, an information gap between general knowledge about treatment and prevention, and capacities to change behaviours. Often, delivered information does not address specific difficulties of the patients.
Chronic pain can have a profound impact on sufferers’ lives, and it is often associated with a loss of confidence and self-esteem. While the majority of cases of low back pain is self-limiting and resolve on their own, the risk of recurrence and development of chronic disease is significant.
The Internet is praised in the literature for its potential of enhancing patients’ coping with conditions. Yet online websites on back pain are for the most part affected by a main limitation: Due to their mainly informative nature, websites provide generic advice that often does not spark users’ interest and does not meet their expectations. The comprehensiveness of generic material is based on the assumption that, as people have different informational needs, individuals will select the content that is relevant to them and sift out what does not apply to them. Despite the avalanche of advice on how to prevent or manage low back pain, there exists an information gap between general knowledge of back pain and the application of this knowledge to ameliorate the individual’s condition.
Between June 2006 and October 2008 the Institute of Communication and Health of the University of Lugano conducted a project to explore to what extent an interactive website, that provides tailored information to patients affected by chronic low back pain, is a proper response to enhance their self-management of this condition.
The conceptual framework behind ONESELF is based on the notion of health literacy. Most recently health literacy—as the cognitive and social skills which determine the ability of individuals to gain access to, understand and use information in ways which promote and maintain good health—has been given increasing attention in attempts to understand people’s health promoting capacities. Patients’ health literacy is a competence that integrates factors working at three main levels. On the first level, health literacy is made up of the kind of knowledge technically labelled declarative. This is the ‘knowledge of the what’ that patients have or develop when they hear / read and understand certain medical-related statements, e.g. diagnoses, explanations of what certain conditions are and of what the benefits / side effects of treatments and drugs are. On the second level, another type of knowledge plays a key role in the development of health literacy, namely procedural knowledge. This term refers to the ‘knowledge of the how’. Procedural knowledge is knowledge directly applied to a task, e.g. to treat a certain disease. It tends to be less general than declarative knowledge and results in the ability of doing specific activities, e.g. to follow a certain treatment, to take a certain drug or to do a specific exercise. Above these two types of knowledge, health literacy includes, on a third level, a set of skills derived from patients’ ability to integrate their knowledge and all sorts of information received in the context of their own existence and goals.
In the outcome, the website includes the Library and the Gym, where users can find texts and videos of exercises to increase their declarative and procedural knowledge, as well as a Forum and a Chat-room where they can meet and interact with both other patients and a group of health professionals that are part of the project team. These are the sections where patients can ask for a contextualisation of their knowledge towards the development of more critical skills to manage their disease.
ONESELF is currently used by approximately 900 patients who live in Ticino (the Italian speaking part of Switzerland) and who have been recruited by health professionals and mass-media channels. Among them, 112 patients agreed on taking part in the study, where they were asked to navigate on the website for 12 months. The patients filled an online questionnaire at the beginning of navigation, and responded in a post questionnaire distributed at the end of the intervention. Qualitative interviews were also conducted with a sample of 18 patients selected depending on the total time they spent online.
Generally, many users reported benefits of using ONESELF in their answers to five different questions asked in the post-use survey. More specifically, 25 per cent reported that ONESELF contributed much to increasing their knowledge about back pain, and an additional 58 per cent said ONESELF had contributed sufficiently to knowledge. Users also acknowledge in majority ONESELF’s contribution to managing their back pain: 12 per cent said the site had contributed much, and 57 per cent said it had contributed sufficiently to managing pain. The next most frequently acknowledged benefits were improvement of communication with doctors (56 per cent) and family and colleagues (55 per cent). A majority of users (55 per cent) also reported that their search for information had decreased (including decidedly decreased) as far as other websites are concerned, and 45 per cent reported the same of other sources of information. Roughly one in three users reported they exercised more (including decidedly more) since starting to use ONESELF, while just 2 per cent said they exercised less since then.
Results from the qualitative study highlight additional information on the way patients used the website. The participants mentioned several positive effects of the use of the website on attitudes and behaviours related to self-management. In the following section we reported the main effects recorded, namely:
Self-comprehension: The interviewed sample considered ONESELF very useful to build an individualised understanding of their situation: the richness and trustworthiness of the information, the possibility to interact with health professionals to obtain specific answers and the stability of the material helped them to construct their personal frame of reference about the nature and the course of their cLBP.
Improvement of argumentative abilities: ONESELF helped people in learning how to speak about their health condition. Users could improve their capacity to frame and explain their situation in a way that people—and especially health professionals—could comprehend and assess correctly.
Orientation: ONESELF provided users with basic information on how to behave towards cLBP. For example, people could learn new exercises or brush up on old ones.
Development of self-confidence: ONESELF helped people to acquire confidence in their ability to manage cLBP. Some users felt reassured because they had a trustworthy place where they could address concerns.
From the point of view of the health professionals’ daily practice, the project ONESELF appeared to be succesful in the creation of a bridge between clinic-based methods for treating back pain and the humanistic approach from communication sciences. There were several difficulties linked to the amount of time that health professionals can devote to projects of medical websites. ONESELF has minimised the risk of overloading health professionals by sub-dividing their tasks and scheduling exactly when each of them had to enter the website and answer patients’ requests. Despite their initial concerns, the health professionals involved in this project became more and more interested in conducting online interactions with users. From the point of view of their daily practice, ONESELF has helped them in at least two ways: First, by referring patients to ONESELF for general background, health professionals could focus the time at disposal for the consultation on more urgent matters; second, ONESELF could help screening requests from patients that do not need face-to-face encounters to be answered.
Overall, the conceptual model of ONESELF proves its potential in improving techniques of self-care through new technologies. Effective self-management of chronic low back pain can reduce healthcare costs and increase worker productivity because of fewer work-related absences. Beyond the simple financial savings, ONESELF has the potential of improving substantially the quality of life of patients who suffer from back pain and from chronic conditions that require similar management.
The authors wish to thank the National Research Programme NRP 53 ‘Musculoskeletal Health – Chronic Pain’ of the Swiss National Science Foundation for the financial support of this study (project 405340–104841/1), as well as the Lega Ticinese per la Lotta contro il Reumatismo, which has enabled its feasibility.
Sara Rubinelli holds a PhD from the University of Leeds (UK) in the areas of ancient logic, argumentation theory and rhetoric. She is a Senior Researcher at the Institute of Communication and Health of the University of Lugano (CH), where she collaborates in national and international research projects in the field of health.
Maria Caiata Zufferey holds a PhD in social science from the University of Friburg (CH). She is currently Senior Researcher at the Institute of Communication and Health of the University of Lugano (CH). She currently works, on a qualitative basis, on doctor-patient communication in the information era.
Peter J Schulz is a Professor of Semiotics and Health Communication at the School of Communication Sciences and Director of the Institute of Communication and Health of the University of Lugano (CH). He currently holds several project grants from the Swiss National Science Foundation in the area of health communication.
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