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      Ethical issues in using the internet to engage participants in family and child research: A scoping review

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          Abstract

          Background

          The internet is an increasingly popular tool in family and child research that is argued to pose new ethical challenges, yet few studies have systematically assessed the ethical issues of engaging parents and children in research online. This scoping review aims to identify and integrate evidence on the ethical issues reported when recruiting, retaining and tracing families and children in research online, and to identify ethical guidelines for internet research.

          Methods

          Academic literature was searched using electronic academic databases (Scopus, PsycINFO, Embase, ERIC, CINAHL and Informit) and handsearching reference lists for articles published in English between January 2006 and February 2016. Grey literature was searched using Google to identify relevant ethical guidelines.

          Results

          Sixty-five academic articles were included after screening 3,537 titles and abstracts and 205 full-text articles. Most articles reported using the internet to recruit participants (88%) with few reporting online retention (12%) or tracing (10%). Forty percent commented on ethical issues; the majority did not discuss ethics beyond general consent or approval procedures. Some ethical concerns were specific to engaging minors online, including parental consent, age verification and children’s vulnerability. Other concerns applied when engaging any research participant online, including privacy and confidentiality, informed consent and disparities in internet access. Five professional guidelines and 10 university guidelines on internet research ethics were identified. Few academic articles (5%) reported using these guidelines.

          Conclusions

          Engaging families and children in research online introduces unique challenges requiring careful consideration. While researchers regarded themselves as responsible for ensuring research is conducted ethically, lack of use of available guidelines and limited academic literature suggests internet research is occurring without suitable guidance. We recommend broad dissemination of ethical guidelines and encourage researchers to report the methodological and ethical issues of using the internet to engage families and children in research.

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          Enhancing the scoping study methodology: a large, inter-professional team’s experience with Arksey and O’Malley’s framework

          Helena ML Daudt, Catherine van Mossel, Samantha J Scott (2013)
          Background Scoping studies are increasingly common for broadly searching the literature on a specific topic, yet researchers lack an agreed-upon definition of and framework for the methodology. In 2005, Arksey and O’Malley offered a methodological framework for conducting scoping studies. In their subsequent work, Levac et al. responded to Arksey and O’Malley’s call for advances to their framework. Our paper builds on this collective work to further enhance the methodology. Discussion This paper begins with a background on what constitutes a scoping study, followed by a discussion about four primary subjects: (1) the types of questions for which Arksey and O’Malley’s framework is most appropriate, (2) a contribution to the discussion aimed at enhancing the six steps of Arskey and O’Malley’s framework, (3) the strengths and challenges of our experience working with Arksey and O’Malley’s framework as a large, inter-professional team, and (4) lessons learned. Our goal in this paper is to add to the discussion encouraged by Arksey and O’Malley to further enhance this methodology. Summary Performing a scoping study using Arksey and O’Malley’s framework was a valuable process for our research team even if how it was useful was unexpected. Based on our experience, we recommend researchers be aware of their expectations for how Arksey and O’Malley’s framework might be useful in relation to their research question, and remain flexible to clarify concepts and to revise the research question as the team becomes familiar with the literature. Questions portraying comparisons such as between interventions, programs, or approaches seem to be the most suitable to scoping studies. We also suggest assessing the quality of studies and conducting a trial of the method before fully embarking on the charting process in order to ensure consistency. The benefits of engaging a large, inter-professional team such as ours throughout every stage of Arksey and O’Malley’s framework far exceed the challenges and we recommend researchers consider the value of such a team. The strengths include breadth and depth of knowledge each team member brings to the study and time efficiencies. In our experience, the most significant challenges presented to our team were those related to consensus and resource limitations. Effective communication is key to the success of a large group. We propose that by clarifying the framework, the purposes of scoping studies are attainable and the definition is enriched.
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            Web-Based Recruiting for Health Research Using a Social Networking Site: An Exploratory Study

            Yeshe Fenner, Suzanne Garland, Elya Moore … (2012)
            Background Recruitment of young people for health research by traditional methods has become more expensive and challenging over recent decades. The Internet presents an opportunity for innovative recruitment modalities. Objective To assess the feasibility of recruiting young females using targeted advertising on the social networking site Facebook. Methods We placed an advertisement on Facebook from May to September 2010, inviting 16- to 25-year-old females from Victoria, Australia, to participate in a health study. Those who clicked on the advertisement were redirected to the study website and were able to express interest by submitting their contact details online. They were contacted by a researcher who assessed eligibility and invited them to complete a health-related survey, which they could do confidentially and securely either at the study site or remotely online. Results A total of 551 females responded to the advertisement, of whom 426 agreed to participate, with 278 completing the survey (139 at the study site and 139 remotely). Respondents’ age distribution was representative of the target population, while 18- to 25-year-olds were more likely to be enrolled in the study and complete the survey than 16- to 17-year-olds (prevalence ratio = 1.37, 95% confidence interval 1.05–1.78, P = .02). The broad geographic distribution (major city, inner regional, and outer regional/remote) and socioeconomic profile of participants matched the target population. Predictors of participation were older age, higher education level, and higher body mass index. Average cost in advertising fees per compliant participant was US $20, making this highly cost effective. Conclusions Results demonstrate the potential of using modern information and communication technologies to engage young women in health research and penetrate into nonurban communities. The success of this method has implications for future medical and population research in this and other demographics.
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              Recruiting for health, medical or psychosocial research using Facebook: Systematic review

              Louise Thornton, Philip J. Batterham, Daniel B. Fassnacht … (2016)
              Recruiting participants is a challenge for many health, medical and psychosocial research projects. One tool more frequently being used to improve recruitment is the social networking website Facebook. A systematic review was conducted to identify studies that have used Facebook to recruit participants of all ages, to any psychosocial, health or medical research. 110 unique studies that used Facebook as a recruitment source were included in the review. The majority of studies used a cross-sectional design (80%) and addressed a physical health or disease issue (57%). Half (49%) of the included studies reported specific details of the Facebook recruitment process. Researchers paid between $1.36 and $110 per completing participants (Mean = $17.48, SD = $23.06). Among studies that examined the representativeness of their sample, the majority concluded (86%) their Facebook-recruited samples were similarly representative of samples recruited via traditional methods. These results indicate that Facebook is an effective and cost-efficient recruitment method. Researchers should consider their target group, advertisement wording, offering incentives and no-cost methods of recruitment when considering Facebook as a recruitment source. It is hoped this review will assist researchers to make decisions regarding the use of Facebook as a recruitment tool in future research.
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                Author and article information

                Contributors
                Stacey Hokke:
                ORCID: http://orcid.org/0000-0003-1338-0156
                Role: InvestigationRole: MethodologyRole: ValidationRole: VisualizationRole: Writing – original draftRole: Writing – review & editing
                Naomi J. Hackworth: Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: SupervisionRole: ValidationRole: Writing – original draftRole: Writing – review & editing
                Nina Quin: Role: InvestigationRole: ValidationRole: Writing – review & editing
                Shannon K. Bennetts: Role: InvestigationRole: MethodologyRole: Writing – review & editing
                Hnin Yee Win: Role: InvestigationRole: Writing – review & editing
                Jan M. Nicholson: Role: ConceptualizationRole: Funding acquisitionRole: MethodologyRole: ResourcesRole: SupervisionRole: Writing – review & editing
                Lawrie Zion: Role: ConceptualizationRole: Funding acquisitionRole: MethodologyRole: Writing – review & editing
                Jayne Lucke: Role: ConceptualizationRole: Funding acquisitionRole: MethodologyRole: Writing – review & editing
                Patrick Keyzer: Role: ConceptualizationRole: Funding acquisitionRole: MethodologyRole: Writing – review & editing
                Sharinne B. Crawford: Role: ConceptualizationRole: Funding acquisitionRole: InvestigationRole: MethodologyRole: Project administrationRole: SupervisionRole: ValidationRole: Writing – review & editing
                Yih-Kuen Jan: Role: Editor
                Journal
                Journal ID (nlm-ta): PLoS One
                Journal ID (iso-abbrev): PLoS ONE
                Journal ID (publisher-id): plos
                Journal ID (pmc): plosone
                Title: PLoS ONE
                Publisher: Public Library of Science (San Francisco, CA USA )
                ISSN (Electronic): 1932-6203
                Publication date (Electronic): 27 September 2018
                Publication date Collection: 2018
                Volume: 13
                Issue: 9
                Electronic Location Identifier: e0204572
                Affiliations
                [1 ] Judith Lumley Centre, La Trobe University, Melbourne, Victoria, Australia
                [2 ] Murdoch Children’s Research Institute, Melbourne, Victoria, Australia
                [3 ] Parenting Research Centre, Melbourne, Victoria, Australia
                [4 ] Queensland University of Technology, Brisbane, Queensland, Australia
                [5 ] Department of Communications and Media, La Trobe University, Melbourne, Victoria, Australia
                [6 ] Australian Research Centre in Sex, Health and Society, La Trobe University, Melbourne, Victoria, Australia
                [7 ] School of Public Health, The University of Queensland, Brisbane, Queensland, Australia
                [8 ] La Trobe Law School, La Trobe University, Melbourne, Victoria, Australia
                University of Illinois at Urbana-Champaign, UNITED STATES
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Author information
                http://orcid.org/0000-0003-1338-0156
                Article
                Publisher ID: PONE-D-18-00287
                DOI: 10.1371/journal.pone.0204572
                PMC ID: 6160098
                PubMed ID: 30261041
                SO-VID: 96fb5736-8f4f-4b08-bed2-995e171cafc7
                Copyright © © 2018 Hokke et al
                License:

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                Date received : 3 January 2018
                Date accepted : 11 September 2018
                Page count
                Figures: 1, Tables: 4, Pages: 30
                Funding
                This work was funded by La Trobe University through the Transforming Human Societies Research Focus Area Scheme 1, 2015; Associate Pro Vice Chancellor (Research), College of Science, Health & Engineering; and Pro Vice Chancellor (Research). Authors SH, NJH, NQ, SKB, JMN and SBC were supported by the Roberta Holmes Transition to Contemporary Parenthood Program (Australian Communities Foundation, Coronella sub-fund). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Subject: Research Article
                Subject: Computer and Information Sciences
                Subject: Computer Networks
                Subject: Internet
                Subject: Social Sciences
                Subject: Sociology
                Subject: Communications
                Subject: Social Communication
                Subject: Social Media
                Subject: Computer and Information Sciences
                Subject: Network Analysis
                Subject: Social Networks
                Subject: Social Media
                Subject: Social Sciences
                Subject: Sociology
                Subject: Social Networks
                Subject: Social Media
                Subject: Research and Analysis Methods
                Subject: Research Assessment
                Subject: Research Reporting Guidelines
                Subject: Social Sciences
                Subject: Sociology
                Subject: Social Research
                Subject: Social Sciences
                Subject: Sociology
                Subject: Communications
                Subject: Social Communication
                Subject: Social Media
                Subject: Facebook
                Subject: Computer and Information Sciences
                Subject: Network Analysis
                Subject: Social Networks
                Subject: Social Media
                Subject: Facebook
                Subject: Social Sciences
                Subject: Sociology
                Subject: Social Networks
                Subject: Social Media
                Subject: Facebook
                Subject: People and Places
                Subject: Population Groupings
                Subject: Age Groups
                Subject: Children
                Subject: People and Places
                Subject: Population Groupings
                Subject: Families
                Subject: Children
                Subject: People and Places
                Subject: Population Groupings
                Subject: Age Groups
                Subject: Children
                Subject: Adolescents
                Subject: People and Places
                Subject: Population Groupings
                Subject: Families
                Subject: Children
                Subject: Adolescents
                Subject: Research and Analysis Methods
                Subject: Database and Informatics Methods
                Subject: Database Searching
                Custom metadata
                Data Availability All relevant data are within the manuscript and its Supporting Information files.

                ScienceOpen disciplines: Uncategorized
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                ScienceOpen disciplines: Uncategorized

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