Social media interactions after diagnosis: Social experiences of adolescents and young adults (AYA) with cancer

Abstract

Purpose

Cancer disrupts the social lives of adolescents and young adults (AYA). Social media may be a resource to engage with social networks, seek entertainment, and receive social support. However, some aspects of social media engagement may be emotionally burdensome and sensitive for AYA to navigate. The aim of this qualitative study was to contextualize the impact of cancer on AYA social media interaction.

Methods

Eight AYA ages 15–21 years and recently diagnosed with cancer participated in a semi-structured interview. AYA were asked about their social media interactions, engagement habits, and online cancer-related disclosure. Interviews averaged 36 min in length and were de-identified and transcribed verbatim and analyzed using thematic analysis.

Results

Four salient themes emerged from the data: (1) AYA engage in active and passive social media use depending on the platform, (2) AYA social media habits change due to treatment experiences, (3) AYA evaluate and protect their self-image, privacy, and time, and (4) AYA access social support online and interpret its meaning in different ways. AYA reported using social media, but many altered their frequency and type of interaction after diagnosis. Some were comfortable sharing about cancer and continued to interact actively online; others felt protective and vulnerable, transitioning to media consumption, or withdrawing from use. While social media provided space to receive direct and indirect social support, AYA interpreted the meaning of support in complex ways.

Conclusions

Social media may serve a variety of socio-emotional needs, but not all AYA will benefit from the same types of social media interaction. This study highlights the importance of talking to AYA with cancer about their social media interactions during treatment to better support their coping and adjustment.

Keywords:

• adolescent and young adult oncology
• disclosure
• friendship
• self-presentation
• social media

Acknowledgements

We would like to thank Bethany Means for her assistance with data collection and to Denise Winsor and Allison Happel-Parkins for their feedback on early drafts of this manuscript.

Authorship contribution statement

Author 1: Conceptualization (lead); writing – original draft (lead); formal analysis (equal); writing – review and editing (equal). Author 2: Conceptualization (supporting); Supervision (lead); formal analysis (equal); writing – review and editing (equal).

Disclosure statement

The authors do not have any real or perceived conflicts of interest to disclose.

Data availability statement

Participants consented to participate in interviews which are protected as confidential; the interview transcripts used for this analysis are thus confidential data and not available to the public.

Additional information

Funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors. Support to St. Jude Children’s Research Hospital was provided by the Cancer Center Support (CORE) grant (CA21765, C. Roberts, Principal Investigator) and the American Lebanese Syrian Associated Charities (ALSAC).