What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs

Rozmovits, Linda; Ziébland, Sue

doi:10.1016/s0738-3991(03)00116-2

Cited by 234 publications

(210 citation statements)

References 13 publications

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“…Like previous studies with more typical cancer survivors [33,34], participants in our sample turned to online communities primarily for information, and less so for emotional support. Our study supports previous research describing the main advantages and disadvantages of the Internet as a communication tool [8,11,12,[35][36][37]. Our study extends the work of others by uncovering the reasons for not using online communities.…”

Section: Benefit Comparison Quotesupporting

confidence: 90%

What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

Bender

Katz

Ferris

et al. 2013

Patient Education and Counseling

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Section: Benefit Comparison Quotesupporting

confidence: 90%

What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

Bender

Katz

Ferris

et al. 2013

Patient Education and Counseling

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“…Indeed, patients themselves now provide a crucial source of online health material and the number of people accessing patient-authored content, in particular those with chronic conditions, has greatly increased [15]. There is increasing evidence that the sharing of patient experiences forms an important part of health-related Internet use [16] and we know that for some patient groups, access to practical and experiential information from other patients is highly valued [17][18][19]. The supportive functions of online patient experiences have also been noted across a number of health conditions (e.g.…”

Section: Introductionmentioning

confidence: 99%

How do people with asthma use Internet sites containing patient experiences?

Sillence

Hardy

Briggs

et al. 2013

Patient Education and Counseling

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Objective: To understand how people engage with websites containing patient authored accounts of health and illness. To examine how people with asthma navigate their way through this information and make use of the patient experiences they find. Methods:Twenty-nine patients with diagnoses ranging from mild to severe asthma were shown a range of websites, some containing patient experiences, and selected two sites to explore further. They discussed their choices in a series of focus groups and interviews.Results: Participants were influenced initially by the design quality of the sites and were subsequently drawn to websites containing patient experiences but only when contributions were from similar people offering 'relevant stories'. The experiences reminded participants of the serious nature of the disease, provided new insights into the condition and an opportunity to reflect upon the role of the disease in their lives. Conclusion:For people with asthma websites containing other patients' personal experiences can serve as a useful information resource, refresh their knowledge and ensure their health behaviours are appropriate and up-to-date.Practice Implications: Health professionals should consider referring asthma patients to appropriate websites whilst being aware that online experiences are most engaging when they resonate with the participants own situation.

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“…For example, the preference for narratives is supported by empirical studies on patients' needs and desires whereby people seek others' stories to help them deal with difficulty and feel comforted that they are not alone in their situation. 28,37 Such narratives are key in helping people cope with difficult information, particularly among those with low literacy skills. 38 Stories can add salience to information, and help make facts and key considerations more understandable.…”

Section: Discussionmentioning

confidence: 99%

Developing a comprehensive, effective patient-friendly website to enhance decision making in predictive testing for Huntington disease

Virani

Creighton

Hayden

2013

Genetics in Medicine

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Purpose: Predictive testing for Huntington disease is a complex decision, requiring in-depth counseling, education, and evaluation. Despite the growth in Web-based decision aids and educational resources, such tools for those considering Huntington disease testing are not available. The main objective of this project was to develop a patient-friendly, comprehensive, accessible Web-based tool to provide accurate information about testing for Huntington disease.Methods: A semistructured interview study was conducted to determine the informational, educational, and support needs of those considering Huntington disease testing. A dedicated predictive testing website was subsequently developed and pilot tested. results:The interview study revealed that an effective website should include interactive diagrams, video documentaries, and personal stories of others who had considered testing. The pilot test revealed that the multidimensional site was easy to navigate and understand and provided an accurate, unbiased overview of the important factors to be considered before undergoing predictive testing.conclusion: This project demonstrates the use of a mixed-method approach to develop the first tailored website dedicated to predictive testing for Huntington disease. Such an approach enabled the development of a comprehensive, accurate, and effective educational tool that supports informed decision making for people considering predictive testing for Huntington disease in an accessible, nonthreatening manner. 2013:15(6):466-472 Genet Med

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What do patients with prostate or breast cancer want from an Internet site? A qualitative study of information needs

Cited by 234 publications

References 13 publications

What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

What is the role of online support from the perspective of facilitators of face-to-face support groups? A multi-method study of the use of breast cancer online communities

How do people with asthma use Internet sites containing patient experiences?

Developing a comprehensive, effective patient-friendly website to enhance decision making in predictive testing for Huntington disease

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