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Guided Health Literacy and Empowerment: The Role of Social Interaction

English title Guided Health Literacy and Empowerment: The Role of Social Interaction
Applicant Nakamoto Kent
Number 135114
Funding scheme ProDoc
Research institution Istituto Media e Giornalismo Facoltà di Scienze della comunicazione Università della Svizzera italiana
Institution of higher education Università della Svizzera italiana - USI
Main discipline Communication sciences
Start/End 01.06.2011 - 31.12.2014
Approved amount 366'757.00
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Keywords (5)

rheumatoid arthritis; social support; empowerment; health literacy; guided literacy

Lay Summary (German)

Lead
Lay summary
Das Konzept der Gesundheitskompetenz (health literacy) hat sich in den letzten 15 bis 20 Jahren als wichtiger Faktor der Gesundheitsversorgung durchgesetzt. Seit der Ottawa-Charta von 1986 wurde zudem Patienten-Empowerment zunehmend als ein Werkzeug erkannt, die Mitwirkung des Patienten in der Gesundheitsversorgung zu stärken. Beide Konzepte hängen zusammen. Der Zusammenhang wurde in einem anderen Forschungsprojekt systematisch erkundet; dort haben wir Kompetenzkomponenten in ein Modell von Empowerment eingefügt, insbesondere deklaratives und prozedurales Wissen sowie die Urteilsfähigkeit des Patienten. Forschungen im Bereich Marketing stellen das Konzept des "psychologischen Empowerment" bereit, das auf die Selbstwahrnehmung des des Einflusses von Mitarbeitern in Unternehmen abzielt. Das Gegenstück ist das situationale Empowerment, das den tatsächlichen Entscheidungsspielraum der Mitarbeiter meint. Unsere geplanten Untersuchungen beabsichtigen zu verstehen, wie Gesundheitskompetenz und Empowerment gesundheitsrelevante Entscheidungen und Verhalten beeinflussen. Die Untersuchungen werden sich dem Leben mit rheumatoider Arthritis widmen. Untersuchungen zeigen, dass die Unterweisung in Techniken des Selbst-Management eine Reihe günstiger Ergebnisse hat und dass Gesundheitskompetenz mit besseren Therapie-Ergebnissen und besserem Selbst-Management einhergehen. Soziale Unterstützung vergrössert Gesundheitskompetenz und Therapieerfolg. Ein Patient mit hohem psychologischem Empowerment, den Wissen fehlt, kann leicht gefährliche Entscheidungen treffen. Andererseits können Patienten mit hoher Gesundheitskompetenz unnötigerweise in grosse Abhängigkeit vom Gesundheitssystem geraten, wenn ihnen Empowerment fehlt.Das Ziel dieses Projektes ist zu prüfen, ob soziale Interaktion über Internet das Empowerment und die Gesundheitskompetenz von Patienten vergrössern kann und damit deren Fähigkeit, das Leiden im Alltag zu bewältigen. Dazu wird ein spezielles Internet-Angebot eingerichtet und mit Informationsmaterial aber auch der Möglichkeit sozialer Interaktion ausgestattet. Diese Möglichkeit wird einem Teil der Patienten vorenthalten, um ihre Wirkungen zu messen. Dieses Projekt sieht drei Studien vor. Studie 1 beschäftigt sich mit der Entwicklung eines Internet-Angebots zum Umgang mit Arthritis. Dabei werden zunächst Patienten, dann Rheumatologen (in Fokusgruppen) und schliesslich der aktuelle Forschungsstand herangezogen. Die Nutzbarkeit wird getestet. Studie 2 testet die Wirkung der Internet-Seite auf Empowerment, Gesundheitskompetenz und Bewältigung im Experiment. Eine Testgruppe kann sowohl die informativen wie auch die sozialen Aspekte der Seite nutzen; einer zweiten sind nur die Informationen zugänglich und einer dritten weder das eine noch das andere (Kontrollgruppe). Studie 3 nutzt qualitative Methoden, um den Einfluss von sozialer Interaktion via Internet auf die Bewältigung von Arthritis besser zu verstehen.
Direct link to Lay Summary Last update: 21.02.2013

Responsible applicant and co-applicants

Employees

Publications

Publication
The Effect of Social Support Features and Gamification on a Web-Based Intervention for Rheumatoid Arthritis Patients: A Randomized Controlled T
Allam A. Kostova Z. Nakamoto K. Schulz PJ (2014), The Effect of Social Support Features and Gamification on a Web-Based Intervention for Rheumatoid Arthritis Patients: A Randomized Controlled T, in Journal of Medical Internet Research, .(.), .-..
Can social support work virtually? Evaluation of Rheumatoid Arthritis patients’ experiences with an interactive online tool
Kostova Z. & Schulz P.J, Can social support work virtually? Evaluation of Rheumatoid Arthritis patients’ experiences with an interactive online tool, in Pain Research & Management .
The impact of social support on the acceptance process among RA patients: a qualitative study
Kostova Z. & Schulz P.J., The impact of social support on the acceptance process among RA patients: a qualitative study, in Psychology & Health .
The process of acceptance among RA patients in Switzerland: a qualitative study
Zlatina Kostova Maria Caiata-Zufferey Peter J. Schulz, The process of acceptance among RA patients in Switzerland: a qualitative study, in Pain Research and Management.

Collaboration

Group / person Country
Types of collaboration
Lega Ticinesi reumatologi Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
28th Conference of the European Health Psychology Society Talk given at a conference Online social support and acceptance: learning how to live with the pain 04.02.2014 Innsbruck, Austria Kostova Zlatina; Nakamoto Kent; Schulz Peter; Allam Ahmed;
Interpersonal Communication and Social Interaction Conference (European Communication Research and Education Association – ECREA) Talk given at a conference An evaluation of an Interactive on-line tool for RA patients 02.09.2013 Amsterdam, Netherlands Kostova Zlatina; Schulz Peter;
Conference Communication, Medicine & Ethics, Trondheim, Norway Talk given at a conference Social Support in Patient Empowerment and Health Literacy: design and implementation of an Internet-based Interactive Health Communication Tool for Chronic Patients 28.06.2012 Trondheim, Norway, Norway Schulz Peter; Kostova Zlatina; Nakamoto Kent; Allam Ahmed;
Medicine 2.0 Harvard University Talk given at a conference Online social support and acceptance: learning how to live with the pain. 15.06.2012 Boston, United States of America Nakamoto Kent; Kostova Zlatina; Schulz Peter;
EpiDay - Meeting of PhD students at USI Talk given at a conference Guided Health Literacy and Empowerment: The Role of Social Interaction 07.05.2012 Lugano - USI, Switzerland Schulz Peter; Kostova Zlatina; Allam Ahmed; Nakamoto Kent;


Knowledge transfer events

Active participation

Title Type of contribution Date Place Persons involved
Healthy day meeting organized by the Swiss Rheumatology League 15.05.2012 Lugano, Switzerland Schulz Peter; Allam Ahmed; Kostova Zlatina;


Associated projects

Number Title Start Funding scheme
132615 Adaptivity in Communication and Health 01.02.2011 ProDoc
146980 Medication Literacy and Empowerment in the Misuse of Prescription Drugs 01.09.2013 Project funding (Div. I-III)

Abstract

The goal of this project is to test whether social interaction on an Internet-based interactive health communication application (to be designed as part of the project) for patients with rheumatoid arthritis will enhance patients’ empowerment and health literacy and their impact upon the self-management of the illness. A website designed for this project will provide pa-tients with information and social support. The latter will be withheld from a group of patients in a controlled experiment to assess the impact of social support.The theoretical background incorporates in a model of patient empowerment literacy compo-nents-specifically declarative and procedural knowledge and the judgmental skills to make reasoned choices. Both empowerment and health literacy have been prevalent concepts in health care literature at least since the Ottawa Charter of 1986. Adapted from the management literature, the concept of empowerment has two meanings, “psychological empowerment” refer-ring to employees’ feelings of empowerment (perceived competence to perform tasks well, feeling influential in their work role, feeling that the work is important, and feeling free to choose how to execute tasks), and “role” or “situational empowerment,” referring to the delegation of responsibility and decision-making authority.The theory proposes that health literacy will be critical to effective patient empowerment, i.e., the patient’s ability to participate as an autonomous actor in making healthcare decisions. A psychologically empowered patient lacking adequate knowledge could well make dangerous choices. On the other hand, highly literate patients lacking in psychological empowerment may choose to be highly dependent on health professionals, despite their ability to make well-informed decisions for themselves.Another tradition of research informing this study is the role of social support in health out-comes. This literature suggests that social support in patients’ environment can improve their empowerment and, consequently, also their health outcomes. Therefore we seek to understand how social interaction on a website will lead to increased arthritis literacy, and how it will be associated with empowerment related to arthritis. This then will lead to increased proper activi-ties and exercises as well as to proper medication usage, and consequently also to better health status and improved quality-of-life.This project envisions three studies. Study 1 is focused on the development of a website, in-formed by an empowerment and literacy model. The website will be developed in a bottom-up approach with a small group of patients and few rheumatologists, informed by evidence-based medicine guidelines, and on the other side on patients’ information needs. We will use focus groups with health professionals. The usability of the site will be tested.Study 2 focuses on the impact of the website on patient empowerment and literacy and, conse-quently, on self-management activities (including the use and misuse of medication, rejection of support). It uses health literacy and empowerment measures to investigate their role in patient behaviors related to the self-management of arthritis, proceeding from the assumption that the key variables-most notably health literacy-must be domain-specific. The study is conducted as an experiment, testing a group who receives informative as well as social support features of the site against another who has access only to the informative sections, with a control group receiving neither.Study 3 aims to understand in detail the impact of social interaction via website on patients’ ability and motivation to self-manage their health condition. It will use qualitative methods to see whether patterns of use discovered in earlier research hold in the new case. The patterns discovered earlier are (1) selective use, (2) enthusiastic use, (3) magic use, and (4) “wait-and-see” use.
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