Altitudes: Moderated online social therapy for carers of young people recovering from first-episode psychosis:

Our online application, entitled “Altitudes”, integrates purpose-built online social networking, expert and peer moderation, and evidence-based psychoeducation within a single application. Specifically, Altitudes, utilizes our Moderated Online Social Therapy (MOST) software framework, the three major functions of this framework include: (i) online psychoeducation (divided into specific thematic pathways which are further separated into individual “steps”); (ii) expert moderated social networking (via a “cafe menu”); and (iii) peer moderation. New users are given a one hour face to face introductory welcome or “induction” to Altitudes with a trained research assistant. The research assistant highlights ways to optimise their use of the system and how to access system help. Uses are invited to complete, at their own convenience, a series of “pathways” organised into distinct themes including self-care, understanding psychosis, early warning signs and prevention of relapse, understanding their personal strengths as a carer, managing behavioural problems in their relative, and communicating with their relative. These pathways are divided into thematically-related psychoeducation steps to maximize the usability of the material. The content of these steps, which entail narrative examples, has been specifically designed to improve carer stress, e.g., by encouraging self-care and by targeting problematic appraisals known to increase carer stress. In addition, the content of the steps have been influenced by social cognition concepts of “agency” and self-efficacy in family life. The steps and pathways entail regular prompts to users to share their reactions to material with other users through a series of “talking points”. Users’ responses populate the content of the social networking newsfeed. In addition, users are able to indicate their preference for material through “like” buttons, share content with others users, and are able to keep track of which users have completed specific pathways and which users share their specific personal strengths. Users of Altitudes are encouraged to communicate with other users and with moderators through the online “cafe” where all other users are visible in the “network” page. Expert and peer moderators are also identifiable as separate classes of users within the network. Users can visit the “wall” of fellow users where posts (and comments upon posts) are displayed along with profile information and images uploaded by each user. Within each user’s home page the moderators can promote specific content, including suggested actions, which are also related to specific “steps”. A group problem solving function, entitled “talk it out” is also featured which is based upon moderated problem solving from multi-family therapy research which has a well-established evidence base for its effectiveness in psychosis. Users can suggest everyday problems in caring for their relative, and the moderator invites other users to join in the problem solving “group”. The system stores previous problems and solutions, providing an easily accessible “solution wiki” to subsequent users. The social networking combined with problem solving and psychoeducation has been designed to provide social support, increase carers’ understanding of their relative’s disorder, and increase flexibility of interpersonal problem solving and communication. Expert moderators, who are clinical psychologists with specialist family work experience, log on to Altitudes at daily intervals with the goal of monitoring safety and encouraging self-care, self-efficacy and positive coping within families. Peer moderators model use of the system and facilitate interactions. Expert moderators present formulations of users at weekly supervision sessions including analyses of system activity and planned interventions to optimise users’ activity. Formulations focus on promoting engagement and targeting their clinical needs. Moderators identify users who are at risk of reduced engagement and form a follow-up plan. Each Altitudes user can log on to the system at their convenience, 24 hours a day, 7 days a week. They will have access to the intervention for at least 6 months with a maximum duration of 20 months. The application is accessible from any device (e.g., personal computer, tablet, mobile phone) and from any location that has access to the internet. In addition to the online intervention, carers will have access to the usual array of services for carers at The Early Psychosis Prevention and Intervention Centre (EPPIC), a comprehensive mental health service at Orygen Youth Health in Melbourne. This includes access to: (i) a series of 3 group-based evening psychoeducation sessions entitled “Family and Friends”; (ii) psychoeducation and support to carers from EPPIC outpatient casemanagers; (iii) specialist family therapist sessions in specific cases, for example where there is a high level of behavioural problems faced by the family. A resource document outlining local support services and 24-hour helplines, will be provided to those participants who present as highly stressed and in need of extra support. These participants will be encouraged to refer themselves to a service such as Carers Victoria or to a GP for their own therapy or counselling. Altitudes users (intervention group only) will be invited by moderators to meet the research team and other users at ‘Altitudes workshops’. These will be offered every 6 months (approx. twice per year) to all Altitudes users. These workshops will be held at a central location convenient to participants. The Altitudes workshops will provide users with the opportunity to ask questions and give informal feedback on the system. It is also intended that the workshops will be a social event, which will assist with engagement with the intervention and encourage online interaction between Altitudes users, participants, and moderators. The workshop protocol is informed by accepted Human Computer Interaction design models for the health arena (specifically mental health) (Doherty 2010) which suggest regular focus groups with participants as a way of refining designs. The workshops will be facilitated by the online moderators, as well as senior researchers and research assistants Moderation integrity will be ensured through a moderation manual and weekly to fortnightly group supervision sessions with senior clinical researchers from the team (CI-Gleeson, CI-Alvarez, CI-Bendall). In addition, moderator online actions will be randomly selected for coding against the guidelines detailed in the Altitudes moderation manual by an independent rater. The group has previously developed reliable fidelity procedures which have been adapted for this trial (Alvarez-Jimenez et al. 2008).