Kindred: A pilot study of moderated online social therapy for carers of youth with borderline personality disorder

Kindred is a Moderated Online Social Therapy (MOST) program. Kindred comprises three highly integrated functions within one web-based application. These include: (1) online psychoeducation and interactive therapy (divided into 9 specific thematic pathways which are further separated into individual "steps"); (2) expert moderated social networking (via a "cafe"); and, (3) peer moderation. Each user can log on at their convenience, 24 hours per day and as many times as they wish. The online psychoeducation and interactive therapy Users complete, at their own convenience, a series of 9 "pathways" organised into distinct themes including understanding BPD, self-care, understanding and utilising their personal strengths as a carer, responding to behavioural problems in their relative, and communicating with their relative. In order to maximize the usability of the material, these pathways are comprised of brief thematically related psychoeducation and interactive therapy "steps". There are 45 'steps' in total across the Kindred program. The content of these steps has been specifically designed to improve carer stress, e.g., by encouraging self-care, by facilitating carer self-efficacy, and by targeting problematic appraisals known to increase carers' stress. In addition, the content of the steps have been influenced by concepts from social cognition theory, namely, agency and self-efficacy in family life. The 45 steps and 9 pathways entail regular prompts to users to share their reactions to the material with other users through a series of "talking points". To ensure that psychoeducation is translated into meaningful behavioural change, we built specific actions entitled "do its", which are related to therapy content (e.g., to practice specific communication skills with their relative) and to users' specific strengths. Users' comments on steps and completed actions populate the content of the social networking newsfeed. In addition, users are able to indicate their preference for material through "like" buttons, rate the relevancy of content, share content with others users, keep track of which users have completed specific pathways, and identify other users who share their personal strengths. Users can also utilise a "team up" function to indicate their support or join other users in striving for specific behaviour change. The social networking features Users of Kindred are encouraged to communicate with each other and with moderators through the online "cafe" where all other users are visible in the "network" page. The professional moderator (described below) is identifiable as a separate class 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. Moderators can promote specific content within each user's home page, including suggested actions, which moderators select based upon individual users' strengths and motivations to use the system. The café menu also includes a group problem solving function, entitled "talk it out", which was derived from moderated problem solving as outlined in multifamily therapy research. Users can suggest everyday problems in caring for their relative, and moderators invite 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. Moderation New users are inducted into Kindred with an orientation to the system, including providing passwords and highlighting ways to optimise Kindred's use and ways to access system help. A professional moderator, (a clinical psychologist), with specialist family work experience, logs on to Kindred at daily intervals with the goal of monitoring safety and encouraging self-care, self-efficacy and positive coping within families by making comments on the newsfeed and sending direct messages to users. A peer moderator, (with lived experience of caring for a relative with severe mental illness), models use of the system and facilitates online interactions. Moderators present formulations of users at weekly supervision sessions including analyses of system activity and planned interventions to optimise users' engagement, and address any specific clinical need by suggesting content matched to users' interests and needs. Through analytics available on the back-end moderator interface, moderators identify users who are at risk of reduced engagement and form a follow-up plan, which might include prompts to log on or suggestions about Kindred content that matches with the users' identified needs and interests. Our approach to online moderation was inspired by the Supportive Accountability framework of ehealth interventions, which highlights that human support is critical to ensuring a necessary level of engagement in ehealth systems. Supportive accountability incorporates self-determination theory, which accounts for individual differences in motivation in terms of the fundamental human needs of relatedness, competency, and autonomy. Moderators develop individualised formulations regarding users' level of motivation to use Kindred and how their specific needs can best be addressed to optimise system engagement. Moderators will organise and invite users to at least one Kindred "meet up", offline face-to-face gatherings held during the course of the trial. The Kindred meet ups are designed to provide users with the opportunity to ask the expert moderators questions and give feedback on the system and encourage increased online interaction between Kindred users and moderators.