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      Online focus groups as a tool to collect data in hard-to-include populations: examples from paediatric oncology

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          Abstract

          Background

          The purpose of this article is to describe and evaluate the methodology of online focus group discussions within the setting of paediatric oncology.

          Methods

          Qualitative study consisting of separate moderated asynchronous online discussion groups with 7 paediatric cancer patients (aged 8–17), 11 parents, and 18 survivors of childhood cancer (aged 8–17 at diagnosis).

          Results

          All three participant groups could be actively engaged over a one-week period. Respondents highly valued the flexibility and convenience of logging in at their own time and place to join the discussion. Adolescent patients and survivors emphasized that the anonymity experienced made them feel comfortable to express their views in detail. The findings indicate a strong preference for online group discussions across all participant groups.

          Conclusion

          The findings show that online focus group methodology is a feasible tool for collecting qualitative data within the setting of paediatric oncology, and may offer new opportunities to collect data in other hard-to-include populations. The evaluations seem to indicate that the online group discussions have given participants an opportunity to articulate their experiences and views in a way they might not have done in a traditional group discussion.

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          Most cited references35

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          Using the Internet for Surveys and Health Research

          This paper concerns the use of the Internet in the research process, from identifying research issues through qualitative research, through using the Web for surveys and clinical trials, to pre-publishing and publishing research results. Material published on the Internet may be a valuable resource for researchers desiring to understand people and the social and cultural contexts within which they live outside of experimental settings, with due emphasis on the interpretations, experiences, and views of `real world' people. Reviews of information posted by consumers on the Internet may help to identify health beliefs, common topics, motives, information, and emotional needs of patients, and point to areas where research is needed. The Internet can further be used for survey research. Internet-based surveys may be conducted by means of interactive interviews or by questionnaires designed for self-completion. Electronic one-to-one interviews can be conducted via e-mail or using chat rooms. Questionnaires can be administered by e-mail (e.g. using mailing lists), by posting to newsgroups, and on the Web using fill-in forms. In "open" web-based surveys, selection bias occurs due to the non-representative nature of the Internet population, and (more importantly) through self-selection of participants, i.e. the non-representative nature of respondents, also called the `volunteer effect'. A synopsis of important techniques and tips for implementing Web-based surveys is given. Ethical issues involved in any type of online research are discussed. Internet addresses for finding methods and protocols are provided. The Web is also being used to assist in the identification and conduction of clinical trials. For example, the web can be used by researchers doing a systematic review who are looking for unpublished trials. Finally, the web is used for two distinct types of electronic publication. Type 1 publication is unrefereed publication of protocols or work in progress (a `post-publication' peer review process may take place), whereas Type 2 publication is peer-reviewed and will ordinarily take place in online journals.
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            Self-disclosure in computer-mediated communication: The role of self-awareness and visual anonymity

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              Collecting behavioural data using the world wide web: considerations for researchers.

              To identify and describe advantages, challenges, and ethical considerations of web based behavioural data collection. This discussion is based on the authors' experiences in survey development and study design, respondent recruitment, and internet research, and on the experiences of others as found in the literature. The advantages of using the world wide web to collect behavioural data include rapid access to numerous potential respondents and previously hidden populations, respondent openness and full participation, opportunities for student research, and reduced research costs. Challenges identified include issues related to sampling and sample representativeness, competition for the attention of respondents, and potential limitations resulting from the much cited "digital divide", literacy, and disability. Ethical considerations include anonymity and privacy, providing and substantiating informed consent, and potential risks of malfeasance. Computer mediated communications, including electronic mail, the world wide web, and interactive programs will play an ever increasing part in the future of behavioural science research. Justifiable concerns regarding the use of the world wide web in research exist, but as access to, and use of, the internet becomes more widely and representatively distributed globally, the world wide web will become more applicable. In fact, the world wide web may be the only research tool able to reach some previously hidden population subgroups. Furthermore, many of the criticisms of online data collection are common to other survey research methodologies.
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                Author and article information

                Journal
                BMC Med Res Methodol
                BMC Medical Research Methodology
                BioMed Central
                1471-2288
                2009
                3 March 2009
                : 9
                : 15
                Affiliations
                [1 ]NIVEL (Netherlands Institute for Health Services Research), P.O. Box 1568, 3500 BN Utrecht, the Netherlands
                [2 ]Department of Paediatric Hemato-Oncology, University Medical Centre St Radboud, Nijmegen, the Netherlands
                [3 ]Department of Paediatric Oncology, University Medical Centre Groningen, Groningen, the Netherlands
                [4 ]Department of Clinical and Health Psychology, Faculty of Social Sciences, Utrecht University, the Netherlands
                Article
                1471-2288-9-15
                10.1186/1471-2288-9-15
                2653071
                19257883
                27b33518-b728-43a3-a271-72b956e46dbe
                Copyright ©2009 Tates et al; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 23 May 2008
                : 3 March 2009
                Categories
                Research Article

                Medicine
                Medicine

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