Electronic Thesis and Dissertation Repository

Thesis Format

Integrated Article


Master of Science


Health and Rehabilitation Sciences


Sibbald, Shannon L.


This study explores the attitudes of older adolescents (aged 16 to 19) regarding researchers collecting personal information from Social Networking Sites (SNSs) through passive observation to support Non-Suicidal Self-Injury (NSSI) research. The aim of this study is to add to the ongoing discourse in the scientific community, by providing a unique perspective on how researchers can uphold ethical conduct throughout their research process. This study adopts a mixed-methods approach and incorporates a QualtricsXM survey and online focus groups (FGs). The findings reveal that participants have reservations toward passive, hidden observational researchers. Despite their concerns, participants support researchers using their findings to support individuals within pro-NSSI communities, provided that privacy and confidentiality are prioritized and there are no personal or social repercussions resulting from the research. This study provides valuable insights for researchers aiming to uphold ethical standards, emphasizing the need to actively incorporate the perspectives of adolescents in the formulation of clear guidelines for Social Networking (SN) research.

Summary for Lay Audience

There are worries about how young people can keep their independence and stay private on social media. Some adolescents are known to access hidden online communities known to researchers for promoting behaviors like Non-Suicidal Self-Injury (NSSI). Researchers are interested in these behaviours and can also use social media and specialized research tools to study these groups of young people. This research explores older adolescents' attitudes concerning the use of their social media data for research purposes. Youth aged 16 to 19 were recruited through social media and mass recruitment emails to participant in a survey and a focus group. This study described what we found in our study on exploring older adolescents’ perspectives about passive researchers observing their social media behaviours, often without explicit knowledge, to better understand NSSI and associated behaviours.

The findings from the study show that participants are sensitive to the risks of engaging with content about NSSI online. Participants are aware of potential long-term consequences, influencing their opinions towards researchers using personal social media data for research purposes. While some participants trust researchers' ability to portray their experiences in online communities, others felt uncomfortable with researchers studying their online activities without explicit knowledge of or consent for. Still, participants understand that social media is causing the world to change quickly, and they agree that it is important to keep studying hidden NSSI communities online.