Methodological and ethical considerations in designing an Internet study of quality of life: A discussion paper

International Journal of Nursing Studies

Volumn 46, Issue 3, 2009, Pages 394-405

  Holmes, Susan ^a  

^a CANTERBURY CHRIST CHURCH UNIVERSITY   (United Kingdom)

Author keywords

Data collection; Ethical issues; Internet; Methodological considerations

Indexed keywords

ARTICLE; CONFIDENTIALITY; EDUCATIONAL STATUS; EPIDEMIOLOGY; ETHICS; HUMAN; INFORMATION PROCESSING; INFORMED CONSENT; INTERNET; MEDICAL ETHICS; METHODOLOGY; NURSING METHODOLOGY RESEARCH; ORGANIZATION AND MANAGEMENT; PATIENT RIGHT; PATIENT SELECTION; PRIVACY; PSYCHOLOGICAL ASPECT; QUALITY OF LIFE; QUESTIONNAIRE; SOCIOECONOMICS; STANDARD;

BIAS (EPIDEMIOLOGY); CODES OF ETHICS; CONFIDENTIALITY; DATA COLLECTION; EDUCATIONAL STATUS; HUMANS; INFORMED CONSENT; INTERNET; NURSING METHODOLOGY RESEARCH; PATIENT RIGHTS; PATIENT SELECTION; PRINCIPLE-BASED ETHICS; PRIVACY; QUALITY OF LIFE; QUESTIONNAIRES; RESEARCH DESIGN; SOCIOECONOMIC FACTORS;

EID: 59849115518     PISSN: 00207489     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.ijnurstu.2008.08.004     Document Type: Article

References (93)

1. Association of Internet Researchers, 2002. Ethical decision making and internet research. Recommendations from the AoIR ethics working committee. (accessed 27.05.2008).
2. Barry D. Assessing culture via the internet: methods and techniques for psychological research. CyberPsychology and Behavior 4 1 (2001) 17-23
3. Bassett E.H., and O'Riordan K. Ethics of Internet research: contesting the human subjects model. Journal of Ethics and Information Technology 4 3 (2002) 233-247
4. Binik Y., Mah K., and Keisler S. Ethical issues in conducting sex research on the internet. The Journal of Sex Research 36 1 (1999) 82-90
5. Birnbaum M. Psychological Experiments on the Internet (2000), Academic Press, New York
6. British Psychological Society, 2007. Ethical principles for conducting research with human participants. (accessed 27.05.2008).
7. Brownlow C., and O'Dell L. Ethical issues for qualitative research in online communities. Disability and Society 17 6 (2002) 685-694
8. Bruckman, A., 2002. Ethical guidelines for research online. (accessed 27.05.2008).
9. Buchanan T. Online assessment: desirable or dangerous?. Professional Psychology: Research and Practice 33 2 (2000) 148-154
10. Butterfield P.G., Yates S.M., Rogers B., and Healow J.M. Overcoming subject recruitment challenges: strategies for successful collaboration with novice research agencies. Applied Nursing Research 16 1 (2003) 46-52
11. Cantrell M.A., and Lupinacci P. Methodological issues in on-line data collection. Journal of Advanced Nursing 60 5 (2007) 544-549
12. Coomber R., 1997. Using the Internet for survey research. Sociological Research On-line, 2 (2), http://www.socreson-line.org.uk/2/2/coomber.htm Accessed January 11 2008.
13. Couper M. Web surveys: a review of issues and approaches. Public Opinion Quarterly 64 (2000) 464-494
14. Data Protection Act, 1998. The Stationery Office, London. (accessed 01.06.2008).
15. Drainoni M., Houlihan B., Williams S., Vedrani M., Esch D., Lee-Hood E., and Weiner C. Patterns of internet use by persons with spinal cord injuries and relationship to quality of life. Archives of Physical and Medical Rehabilitation 85 11 (2004) 1872-1879
16. Duffy M. Web-based research: an innovative method for nursing research. Journal of Canadian Oncology Nursing 10 2 (2000) 45-49
17. Duffy M.E. Methodological issues in web-based research. Journal of Nursing Scholarship 34 1 (2002) 83-88
18. Eaton J., and Ward Struthers C. Using the Internet for organizational research: a study of cynicism in the workplace. CyberPsychology & Behavior 5 4 (2002) 305-313
19. Economic and Social Research Council (ESRC), 2006. Research ethics framework. (accessed 27.05.2008).
20. Elgesem, D., 2003. What is so special about the ethical issues in on line research: Internet research ethics. (accessed 01.06.2008).
21. European Data Protection Directive, 1995. (accessed 11.06.2008).
22. Eysenbach G., and Till J. Ethical issues in qualitative research on Internet communities. British Medical Journal 323 7321 (2001) 1103-1105
23. Fernandez C.V., Kodish K., and Weijer C. Informing study participants of research results: an ethical imperative. Ethics and Human Research 25 3 (2003) 12-19
24. Finfgeld D. Therapeutic groups online: the good, the bad, and the unknown. Issues in Mental Health Nursing 21 3 (2000) 241-255
25. Fleitas J. Spinning tales from the world wide web: qualitative research in an electronic community. Qualitative Health Research 8 2 (1998) 283-292
26. Franklin K., and Lowry C. Computer-mediated focus group sessions: naturalistic inquiry in a networked environment. Qualitative Research 1 2 (2001) 169-184
27. Gosling S.D., Vazire S., Srivastava S., and Oliver J. Should we trust web-based studies? A comparative analysis of six preconceptions about Internet questionnaires. American Psychologist 59 2 (2004) 95-104
28. Griffiths M. Sex on the Internet: observations and implications for Internet sex addiction. Journal of Sex Research 38 4 (2004) 333-342
29. Haigh C., and Jones N.A. An overview of the ethics of cyber-space research and the implications for nurse education. Nursing Education Today 25 1 (2005) 3-8
30. Haigh C., and Jones N. Techno-research and Cyber-ethics: challenges for ethics committees. Research Ethics Review 3 3 (2007) 80-81
31. Hewson C., Yule P., Laurent D., and Vogel C. Internet Research Methods: A Practical Guide for the Social and Behavioural Sciences (2003), Sage, London
32. Holmes S. A study of quality of life in Internet health chat room users. Journal of Research in Nursing 11 2 (2006) 118-129
33. Houlihan B.V., Drainoni M., Warner G., Nesathurai S., and Wiebicky J. The impact of internet access for people with spinal cord injuries: a descriptive analysis of a pilot study. Disability and Rehabilitation 25 8 (2003) 422-431
34. Hudson J.M., and Bruckman A. Using empirical data to reason about Internet research ethics. In: Gellersen H., Schmidt K., Beaudouin-Lafon M., and Mackay W. (Eds). Proceedings of the Ninth European Conference on Computer-Supported Cooperative Work (2005), Springer, Netherlands 287-306
35. Im E.-O., and Chee W. A feminist critique on the use of the Internet in nursing research. Advances in Nursing Science 23 4 (2001) 67-82
36. Im E.-O., and Chee W. Recruitment of research participants through the Internet. Computers, Informatics Nursing 22 5 (2004) 280-297
37. Im E.-O., Chee W., Bender M., Cheng C.-Y., Tsai H.-M., Kang N.M., and Lee H. The psychometric properties of pen-and-pencil and internet versions of the midlife women's symptom index (MSI). International Journal of Nursing Studies 42 2 (2005) 167-177
38. Jankowski, N., van Selm, M., 2001. Research ethics in a virtual world: some guidelines and illustrations. (accessed 01.06.2008).
39. Joinson A.N. Understanding the Psychology of Human Behaviour. Virtual Worlds Real Lives (2003), Palgrave Macmillan, New York
40. Kane P. Hitchhiker's Guide to the Electronic Highway (1994), MIS Press, New York
41. King S.A. Researching internet communities: proposed ethical guidelines for the reporting of results. The Information Society 12 2 (1996) 119-128
42. Klemm P., Bunnell D., Cullen M., Soneji R., Gibbons P., and Holecek A. Online cancer support groups: a review of the research literature. Computers in Nursing 21 3 (2003) 136-142
43. Kollock P., and Smith M.A. Communities in cyberspace. In: Smith M.A., and Peter K. (Eds). Communities in Cyberspace (1999), Routledge, London
44. Kralik D., Warren J., Price K., Koch T., and Pignone G. The ethics of research using electronic mail discussion groups. Journal of Advanced Nursing 52 5 (2005) 537-545
45. Krantz J., and Dalal R. Validity of web-based psychological research. In: Birnbaum M.H. (Ed). Psychological experiments on the Internet (2000), Academic Press, San Diego, CA 35-60
46. Kraut R., Patterson M., Lundmark V., Kiesler S., Mukhopadhyay T., and Scherlis W. Varieties of social influence; the role of utility and norms in the success of a new communication medium. Organisation Sciences 9 4 (1998) 437-453
47. Kraut R., Olson J., Banaji M., Bruckman A., Cohen J., and Couper M. Psychological research online. Report of the Board of Scientific Affairs' Advisory Group on the Conduct of Research on the Internet. American Psychologist 59 2 (2004) 105-117
48. Kuusi M., Nuorti J., Maunula L., Von Bonsdorff C., Miettinen I., and Pesonen H. Internet use and epidemiologic investigation of gastroenteritis outbreak. Emerging Infectious Diseases 1 3 (2004) 447-450
49. Kypri K., and McAnally H.M. Randomized controlled trial of a web-based primary care intervention for multiple health risk behaviors. Preventive Medicine: An International Journal Devoted to Practice and Theory 41 3-4 (2004) 761-766
50. La Coursiere S. Research methodology for the internet: external validity (generalizability). Advances in Nursing Science 25 4 (2003) 257-273
51. Leece, P., Bhandari, M., Sprague, S., Swiontkowski, M.J., Schemitsch, E.H., Tornetta, P., Devereaux, P.J., Guyatt, G.H., 2004. Internet versus mailed questionnaires: a randomized comparison (2). Journal Medical Internet Research 6 (3) e30. doi:10.2196/jmir.6.3.e30.
52. Lenhart, A., Horrigan, J., Rainie, L., Allen, K., Boyce, A., et al., 2003. The Ever-Shifting Internet Population: A New Look at Internet Access and the Digital Divide. Pew Internet Am. Life Proj. Washington, DC. (accessed 01.06.2008).
53. Lewis J. Making order out of a contested disorder: the utilisation of online support groups in social science research. Qualitative Researcher 2006 3 (2006) 4-7
54. Manfreda, K.L., Batagelj, Z., Vehovar, V., 2002. Design of web survey questionnaires: three basic experiments. Journal of Computer Mediated Communication 7 (3), doi:10.1111/j.1083-6101.2002.tb00149.x.
55. Mann C., and Stewart F. Internet Communication and Qualitative Research: A Handbook for Researching Online (2000), Sage Publications, London
56. Marsden J., Dolan B., and Holt L. Nurse practitioner practice and deployment: electronic mail Delphi study. Journal of Advanced Nursing. 43 6 (2003) 595-605
57. Mathy R.M., Kerr D.L., and Haydin B. Methodological rigor and ethical considerations in Internet-mediated research. Pyschotherapy: Theory, Research, Practice, Training 40 1/2 (2000) 77-85
58. Mathy R.M., Schillace M., Coleman S.M., and Berquist B.E. Methodological rigor with Internet samples: new ways to reach underrepresented populations. CyberPsychology and Behavior 5 3 (2002) 253-266
59. Mathy R.M., Kerr D.L., and Haydin B.M. Methodological rigor and ethical considerations in Internet-mediated research. Psychotherapy: Theory, Research, Practice, Training 40 12 (2003) 77-85
60. McAlindon T., Formica M., Kabbara K., LaValley M., and Lehmer M. Conducting clinical trials over the internet feasibility study. British Medical Journal 327 7413 (2003) 484-487
61. McGee R., and Kypri K. Alcohol-related problems experienced by university students in New Zealand. Australian & New Zealand Journal of Public Health 28 4 (2004) 321-323
62. Michalak E., and Szabo A. Guidelines for Internet research: an update. European Psychologist 3 1 (1998) 70-75
63. Moloney M.F., Dietrich A.S., Strickland O., and Myerburg S. Using Internet discussion boards as virtual focus groups. Advances in Nursing Science 26 4 (2003) 274-286
64. Murray B. Knowledge Machines: Language and Information in a Technological Society (1995), Longman, London
65. Murray P. Nurses' computer-mediated communications on NURSENET: a case study. Computers in Nursing 14 4 (1996) 227-234
66. Murray D.M., and Fisher J.D. The Internet: a virtually untapped tool for research. Journal of Technology in Human Services 19 2/3 (2002) 5-18
67. National Research Ethics Service, 2008. (accessed 28.05.2008).
68. Nonnecke B., and Preece J. Lurker demographics: counting the silent Special Interest Group in Computer-Human Interactions 2000. ACM Conference on Human Factors in Computing Systems. Computer-Human Interactions Letters 4 1 (2000) 73-80
69. O'Connor H., and Madge C. Cyber-Parents and Cyber-Research: Exploring the Internet as a Medium for Research (2000), Centre for Labour Market Studies, University of Leicester
70. O'Neil K.M., and Penrod S.D. Methodological variables in web-based research that may affect results: sample type, monetary incentives, and personal information. Behavioral Research Methods, Instruments and Computers 33 2 (2001) 226-233
71. Partridge A.H. Informing clinical trial participants about study results. Journal of the American Medical Association 288 3 (2002) 363-365
72. Pittinger D. Internet research: an opportunity to revisit classic ethical problems in behaviour research. Ethics and Behaviour 13 1 (2003) 45-60
73. Read C.Y. Conducting a client-focused survey using e-mail. Computers, Informatics, Nursing. 22 2 (2004) 83-89
74. Redes S., and Lunney M. Validation by school nurses of the Nursing Intervention Classification for computer software. Computers in Nursing 15 6 (1997) 333-338
75. Research Surveys of Great Britain, 2001. ICT access and use: Report on the benchmark survey. Research Report No. 252. London: DfES. Also available at: (accessed 01.06.2008).
76. Rhodes S.D., Bowie D.A., and Hergenrather K.C. Collecting behavioural data using the world-wide web: considerations for researchers. Journal of Epidemiology and Community Health 57 1 (2003) 68-73
77. Robinson A. Phenomenology. In: Cluett E.R., and Bluff R. (Eds). Principles and Practice of Research in Midwifery (2005), Bailliere Tindall, London
78. Robinson J.P., Neustadtl A., and Kestembaum M. Why public opinion polls are inherently biased: public opinion differences among Internet users and non-users. Paper Presented at the Conference of the American Association for Public Opinion Research. St Petersburg, FL (2002)
79. Rodham K., and Gavin J. The ethics of using the Internet to collect qualitative research data. Research Ethics Review 2 3 (2006) 92-97
80. Schaefer D., and Dillman D.A. Development of a standard e-mail methodology: results of an experiment. Public Opinion Quarterly 62 3 (1998) 378-397
81. Skitka L.J., and Sargis E.G. Social psychological research and the Internet: the promise and peril of a new methodological frontier. In: Amichai-Hamburger Y. (Ed). The Social Net: The Social Psychology of the Internet. (2005), Cambridge University Press, New York 1-25
82. Skitka, Linda J., Sargis, and Edward G. The Internet as Psychological Laboratory. Annual Review of Psychology 57 5 (2006) 529-555
83. Tate R. An Introduction to Modeling Outcomes in the Behavioral and Social Sciences. 2nd ed. (1998), Burgess Publishing, Edina, MN
84. Till, J.E., 1997. Research ethics: internet-based research. Part 1: Online survey research. (accessed 01.06.2008).
85. UK National Statistics Office, 2006 (accessed 01.06.2008).
86. Valaitis R., and Sword W. Online discussions with pregnant and parenting adolescents: perspectives and possibilities. Health Promotion and Practice 6 4 (2005) 464-471
87. VanDenKerkhof E., Parlow J., Goldstein D., and Milne B. In Canada, anesthesiologists are less likely to respond to an electronic, compared to a paper questionnaire. Canadian Journal of Anaesthesia 51 5 (2004) 449-454
88. Waskul, D., 1996. Ethics of online research: considerations for the study of computer mediated forms of interaction. (accessed 01.06.2007).
89. Waskul D., and Douglass M. Cyberself: the emergence of self in online chat. Information Society 13 4 (1997) 373-397
90. Wastlund E., Norlander T., and Archer T. Internet blues revisited: replication and extension of an internet paradox study. Cyberpsychology and Behaviour 6 3 (2001) 653-656
91. White M.H., and Dorman S.M. Online support for caregivers: analysis of an Internet al.zheimer mailgroup. Computers in Nursing 18 4 (2000) 168-179
92. Whitehead L.C. Methodological and ethical issues in Internet-mediated research in the field of health: an integrated review of the literature. Social Science and Medicine 65 4 (2007) 782-791
93. Whitty, M.T., 2008. Revealing the 'real' me, searching for the 'actual' you: presentations of self on an internet dating site Computers in Human Behavior. 24(4) 1707-1723