title: Considerations for conducting Web-based survey research with people living with human immunodeficiency virus using a community-based participatory approach.
abstract: BACKGROUND
  Web or Internet-based surveys are increasingly popular in health survey research. However, the strengths and challenges of Web-based surveys with people living with human immunodeficiency virus (HIV) are unclear.
  
  
  OBJECTIVE
  The aim of this article is to describe our experience piloting a cross-sectional, Web-based, self-administered survey with adults living with HIV using a community-based participatory research approach.
  
  
  METHODS
  We piloted a Web-based survey that investigated disability and rehabilitation services use with a sample of adults living with HIV in Canada. Community organizations in five provinces emailed invitations to clients, followed by a thank you/reminder one week later. We obtained survey feedback in a structured phone interview with respondents. Participant responses were transcribed verbatim and analyzed using directed content analysis.
  
  
  RESULTS
  Of 30 people living with HIV who accessed the survey link, 24/30 (80%) initiated and 16/30 (53%) completed the survey instrument. A total of 17 respondents participated in post-survey interviews. Participants described the survey instrument as comprehensive, suggesting content validity. The majority (13/17, 76%) felt instruction and item wording were clear and easy to understand, and found the software easy to navigate. Participants felt having a pop-up reminder directing them to missed items would be useful.
  
  
  CONCLUSIONS
  Strengths of implementing the Web-based survey included: our community-based participatory approach, ease of software use, ability for respondents to complete the questionnaire on one's own time at one's own pace, opportunity to obtain geographic variation, and potential for respondent anonymity. Considerations for future survey implementation included: respondent burden and fatigue, the potentially sensitive nature of HIV Web-based research, data management and storage, challenges verifying informed consent, varying computer skills among respondents, and the burden on community organizations. Overall, results provide considerations for researchers conducting community-based participatory Web-based survey research with people living with HIV.
authors.affiliation: kelly.obrien@utoronto.ca.
authors.forename: Kelly K
authors.initials: KK
authors.lastname: O'Brien
authors.forename: Patricia
authors.initials: P
authors.lastname: Solomon
authors.forename: Catherine
authors.initials: C
authors.lastname: Worthington
authors.forename: Francisco
authors.initials: F
authors.lastname: Ibáñez-Carrasco
authors.forename: Larry
authors.initials: L
authors.lastname: Baxter
authors.forename: Stephanie A
authors.initials: SA
authors.lastname: Nixon
authors.forename: Rosalind
authors.initials: R
authors.lastname: Baltzer-Turje
authors.forename: Greg
authors.initials: G
authors.lastname: Robinson
authors.forename: Elisse
authors.initials: E
authors.lastname: Zack
mesh_terms: D000328:Adult; D002170:Canada; D055812:Community-Based Participatory Research; D003430:Cross-Sectional Studies; D005260:Female; D015658:HIV Infections / Q000150:complications / Q000534:rehabilitation; D006306:Health Surveys / Q000379:methods*; D006801:Humans; D020407:Internet; D008297:Male; D008875:Middle Aged; D010865:Pilot Projects; D012047:Rehabilitation Centers / Q000706:statistics & numerical data; D057566:Self Report; D012984:Software; D011795:Surveys and Questionnaires
keywords: HIV infections; Internet; community-based participatory research; health surveys; questionnaires; self-report