Experiences and Preferences of Patients with Rheumatic Diseases Regarding an Interactive Health Communication Application

Vaart, Rosalie van der; Drossaert, Constance H.C.; Taal, Erik; Laar, Mart A F J van de

doi:10.1109/etelemed.2010.16

Cited by 12 publications

(6 citation statements)

References 34 publications

(39 reference statements)

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“…Besides, they doubted whether the experiences of other partners would be helpful to them. These results are in line with various previous studies [32,33]. It seems that partners have ambivalent feelings toward peer contact: they do feel the need, yet they are afraid of being confronted with negative stories of other peers.…”

Section: Discussionsupporting

confidence: 92%

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Köhle¹,

Drossaert²,

Oosterik³

et al. 2015

JMIR Cancer

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BackgroundEvidence-based, easily accessible, supportive interventions for partners of cancer patients are limited, despite the fact that they often suffer from diminished emotional, social, physical, and relational functioning. To develop a new intervention that will fit their demands, it is important to consult potential users.ObjectiveTo examine partners’ interest in a Web-based psychological intervention and to identify their needs and wishes regarding such an intervention.MethodsSemistructured interviews were conducted with 16 partners of cancer patients, who varied in terms of age, gender, education, employment, type, and stage of disease. Partners were asked (1) whether they would use a psychological Web-based intervention and which preconditions (maximum time, structure, participate alone or with their partner) it should meet; (2) which functionalities (information, peer support, online psychological counseling) the intervention should contain; and (3) which topics (eg, taking care of oneself) should be addressed. Data were coded by 2 coders independently.ResultsThe need for a Web-based intervention varied. Arguments for being interested in a Web-based intervention included the need for acknowledgement; the need for someone they could talk to; and the need for information, tips, and support. Based on their experiences as a partner of a cancer patient, participants would prefer an intervention that is not too time-consuming (about 1-2 hours a week) and which is based on a “step-by-step” approach, meaning that the content of the intervention should match the stage of their partner’s disease. Also, they would prefer a positive approach, which means that the intervention should be a source of hope and energy. Most participants stated that they would prefer to participate without their ill spouse, because they do not want to burden their partners with their own problems. An intervention should contain information and optional peer support. Participants’ opinions about online psychological counseling in the intervention were divided. Arguments for online psychological counseling were that a professional could check on them and they were able to ask questions. Arguments against online counseling were that partners were not in need for guidance or they had enough support from usual care. Topics with the highest priority were “coping with feelings and emotions,” “should I or shouldn’t I spare my partner?,” “communicating with each other,” “asking for help and refusing help,” and “moving on with life after cancer treatment.” Furthermore, participants suggested additional topics of “dare to enjoy” and “acceptance of the patient’s disease.”ConclusionsA Web-based intervention can be a valuable addition to existing support initiatives for partners of cancer patients. This study provides important information about the content and form of such an intervention. Flexibility and a positive approach seem to be the most important features.

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Section: Discussionsupporting

confidence: 92%

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Köhle¹,

Drossaert²,

Oosterik³

et al. 2015

JMIR Cancer

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“…First of all, the problems that were observed in these studies cannot solely be attributed to the patients’ skills, since the usability of Health 1.0 and Health 2.0 applications also plays a major role in overcoming operation, navigation, and information problems. Websites and interactive applications should be designed in a user-centered manner to overcome problems that many novice Internet users may experience [2,10,23,40]. In order to reach this, guidelines should be followed to focus on keeping a website plain and simple regarding navigation structures and usage of buttons [41].…”

Section: Discussionmentioning

confidence: 99%

“…The Health 1.0 assignments contained pilot tests investigating the relevance of the assignments to rheumatology patients, to ensure that the information-retrieval assignments reflected realistic scenarios. The Health 2.0 assignments were built based on results from previous studies [2,23], which highlights information that patients would find relevant and useful. We therefore only asked nurse practitioners to help us frame the scenarios for the Health 2.0 assignments.…”

Section: Methodsmentioning

confidence: 99%

Measuring Actual eHealth Literacy Among Patients With Rheumatic Diseases: a Qualitative Analysis of Problems Encountered Using Health 1.0 and Health 2.0 Applications

Vaart¹,

Drossaert²,

Heus³

et al. 2013

J Med Internet Res

101

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BackgroundThe Internet offers diverse opportunities for disease management, through information websites (Health 1.0) and interactive applications such as peer support forums, online consults, and insight into electronic medical records (Health 2.0). However, various skills are required to benefit from Health 1.0 and Health 2.0 applications for one’s own health, known as eHealth literacy.ObjectiveTo study the eHealth literacy of patients with rheumatic diseases and the types of problems they encounter when using the Internet in relation to their disease.MethodsIn two studies, patients were asked about their current disease-related Internet use and their eHealth literacy was observed during performance tests. In study 1, 15 patients (aged 39-74) performed 6 information-retrieval tasks on the Internet (Health 1.0). In study 2, 16 patients (aged 24-72) performed 3 Health 2.0 tasks on a hospital-based online Web portal and 2 Health 2.0 tasks on interactive websites. Participants were asked to think aloud while performing the assignments, and screen activities were recorded. Types and frequency of problems were identified by 2 independent researchers and coded into categories using inductive analysis.ResultsAlmost all patients in our studies had searched the Internet for information about rheumatic diseases in the past. Fewer patients had used Health 2.0 applications, but many were nevertheless enthusiastic about the possibilities from Health 2.0 applications after finishing the assignments. However, nearly all participants experienced difficulties, and a substantial number of participants were not able to complete all of the assignments. Encountered problems could be divided into 6 sequential categories: (1) operating the computer and Internet browser, (2) navigating and orientating on the Web, (3) utilizing search strategies, (4) evaluating relevance and reliability, (5) adding content to the Web, and (6) protecting and respecting privacy. Most severe difficulties occurred in levels 3 and 4—in formulating a search query, evaluating the source of the information, and in scanning a website for relevant information.ConclusionsMany patients have insufficient skills to properly use Health 1.0 and Health 2.0. Formulating proper search strategies and evaluating the found information caused problems among the majority of patients. Concerning Health 2.0, use and awareness of these applications is low and patients should be guided in the use of them. Our findings may contribute to the awareness of patients’ eHealth literacy problems among health professionals, and stress the importance of usability guidelines in Web design.

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“…Topics and questions were derived from the literature (van der Vaart et al . ) and clinical experience of our team. In addition, participants were asked to provide information about demographics and cancer treatment.…”

Section: Methodsmentioning

confidence: 98%

Improving access to supportive cancer care through an eHealth application: a qualitative needs assessment among cancer survivors

Lubberding

Uden–Kraan

Velde

et al. 2015

Journal of Clinical Nursing

113

104

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Study results provide care providers with insight into barriers that impede survivors from obtaining optimal supportive care. This study also provides insight into the characteristics needed to design, build and implement an eHealth application targeting personalised access to supportive care from the survivors' perspective. Future studies should address the viewpoints of care providers, and investigate the usability of the eHealth application prototype to facilitate implementation.

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Experiences and Preferences of Patients with Rheumatic Diseases Regarding an Interactive Health Communication Application

Cited by 12 publications

References 34 publications

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Needs and Preferences of Partners of Cancer Patients Regarding a Web-Based Psychological Intervention: A Qualitative Study

Measuring Actual eHealth Literacy Among Patients With Rheumatic Diseases: a Qualitative Analysis of Problems Encountered Using Health 1.0 and Health 2.0 Applications

Improving access to supportive cancer care through an eHealth application: a qualitative needs assessment among cancer survivors

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