Young People’s Experience of a Long-Term Social Media–Based Intervention for First-Episode Psychosis: Qualitative Analysis

Abstract

Background Digital mental health interventions present a unique opportunity to address the lack of social connection and loneliness experienced by young people with first-episode psychosis (FEP). The first generation of digital interventions, however, is associated with high attrition rates. Social media presents an opportunity to target this issue. A new generation of digital intervention has harnessed the popularity of social media to both promote engagement and foster social connectedness in youth mental health interventions. Despite their potential, little is known about how young people engage with, and experience, social media–based interventions as well as the optimal design, implementation, and management needed to ensure young people with psychosis receive benefit. Objective This study aimed to explore how young people engage with, and experience, a long-term social media–based mental health intervention designed to address social functioning in individuals with FEP. Methods This qualitative study was based on 12 interviews with young people who used Horyzons, a long-term social media–based mental health intervention, as part of a previous randomized controlled trial. A semistructured phenomenological interview guide with open-ended questions was used to explore young people’s subjective experience of the intervention. All interviews were recorded and transcribed verbatim. Data were analyzed using interpretative phenomenological analysis. Results A total of 4 superordinate themes emerged during the analysis including (1) shared experience as the catalyst for a cocreated social space, (2) the power of peer support, (3) an upbeat environment, and (4) experiences that interrupt being in Horyzons. Conclusions We found that Horyzon’s therapeutic social network fostered a connection and an understanding among young people. It also aided in the creation of an embodied experience that afforded young people with FEP a sense of self-recognition and belonging over the long term. However, although we found that most young people had strong positive experiences of a social connection on Horyzons, we also found that they experienced significant barriers that could substantively interrupt their ability to use the platform. We found that social anxiety, paranoia, internalized stigma, lack of autonomy, and social protocol confusion interfered with young people’s usage of the platform. From a design perspective, digital interventions are flexible and thus equipped to begin addressing these implications by providing customizable and personalized treatment options that account for varying levels of social connection and psychological need that could otherwise interrupt young people’s usage of social media–based interventions.

Moderated Online Social Therapy for Young People With Active Suicidal Ideation: Qualitative Study

“…The finding that Affinity was perceived to be supportive and safe and that participants valued being surrounded by others with similar experiences aligns with the quantitative results we have reported elsewhere supporting the acceptability and safety of Affinity [27]. The importance of mutual experiences has also been identified as a theme in other studies using the MOST platform [33,34] and the literature on online support groups for suicidal people [35,36]. The positive impact of providing support to others was also raised by some participants and has been identified in the broader online support group literature [36], although it is acknowledged that 2 participants in this study also reported negative aspects of supporting others, which are important and worthy of further exploration.…”

“…Moreover, some participants reported experiencing these benefits just by reading other users' posts, suggesting that the positive impact of mutual experiences may occur even without active participation. The ability of participants to experience therapeutic benefit from passively participating in web-based peer support networks has also been found in previous studies using the MOST model [33,38] and in studies of online health-related support groups more broadly [39,40].…”

Adaptation of a Digital Health Innovation to Prevent Relapse and Support Recovery in Youth Receiving Services for First-Episode Psychosis: Results From the Horyzons-Canada Phase 1 Study

“…With the majority of young people now using the internet, social media, and mobile devices, the use of technology is an important avenue for supporting recovery in young people experiencing FEP. Research on the use of technology to deliver psychosocial interventions is emerging within the field of early intervention for psychosis [ 24 - 27 ]; however, less attention has been given to how digital health innovations can be adapted across settings. Our study addresses this gap and contributes to the growing field of implementing digital health innovations within the context of mental health service delivery.…”

Blended Digital and Face-to-Face Care for First-Episode Psychosis Treatment in Young People: Qualitative Study

“…To date, however, uptake of and engagement with digital mental health interventions are low, and attrition rates for mental health interventions, in general, are high [ 13 , 17 ]. Furthermore, most online interventions are focused on initial or short-term engagement, and little is known about maintaining long-term engagement [ 18 ].…”