Factors that affect clinical youth engagement in digital mental health research: a qualitative sub-study nested within a prospective cohort study

TL;DR

This study explores how young people engage in digital mental health research, focusing on their experiences with remote methods and data privacy concerns.

Contribution

The study introduces insights into youth engagement in digital mental health research through co-production and highlights barriers like data sharing concerns.

Findings

Young people found remote digital tools convenient and private for discussing sensitive topics.

Data sharing concerns and complex social media data access processes hindered engagement.

Parental involvement and proactive researchers improved participation in the study.

Abstract

There has been extensive debate about the role of social media and smartphone use in youth mental health and self-harm. Research to date lacks sufficient detail to determine the mechanisms underpinning any associations. The Social Media, Smartphone use and Self-harm in Young People (3S-YP) study is a prospective cohort study that was co-produced with young people to investigate temporal patterns of social media and smartphone use prior to an episode of self-harm in a clinical youth sample. Young people were actively involved in all key stages of the research process to ensure the research would be relevant and acceptable to the intended population. This included defining the research question and designing the methods. This qualitative sub-study nested within the main 3S-YP study aimed to evaluate young people’s experiences of engaging in this innovative digital mental health study. This will help inform understanding regarding the added value of co-production and future research in this field.

Semi-structured interviews were conducted with a purposive sample of participants from the 3S-YP study. Interview data was analysed using codebook thematic analysis.

Sixteen young people (mean 19.8 years old, SD 2.9; n = 10 female, 63%) participated in the interviews. Participants were generally comfortable answering questions about sensitive topics using remote digital tools, appreciating the greater privacy, convenience and opportunity for self-reflection they provide, whilst noting periods of poor mental health may affect study engagement. The remote research methods (including the participation information and tools for recruitment and data collection) were considered user-friendly and were complemented by the active role of the research team who facilitated young people’s engagement with the study. Despite the relevance and support for research on the impact of digital technology use on youth mental health, concerns about data sharing and a complex process for accessing data from social media platforms complicated study engagement. The role of parental involvement was also described.

User-friendly remote research methods, coupled with proactive, responsive researchers and parental support are beneficial for conducting research with clinical youth populations. Whilst young people endorse research in this field, concerns about data sharing and barriers to data access need addressing if researchers are to effectively employ innovative solutions to investigating the impact of smartphones and social media use on youth mental health and self-harm. The findings from this study demonstrate the value of actively involving those with lived experience throughout the research process and provide useful insight for researchers intending to conduct similar research.

This study is registered on ClinicalTrials.gov (ID no. NCT04601220).

The online version contains supplementary material available at 10.1186/s12874-025-02571-9.

Figures