Kindred: A pilot study of moderated online social therapy for carers of youth with borderline personality disorder
Australian Catholic UniversityDataset description
Dataset encapsulates comprehensive usage and interaction data from the Kindred MOST program, a web-based intervention designed to support carers of young people with borderline personality disorder (BPD). Kindred integrates three main components: (1) online psychoeducation and interactive therapy structured into 9 thematic pathways and 45 steps, focusing on various aspects like understanding BPD, self-care, and enhancing communication skills; (2) a moderated social networking platform termed "cafe," where users can engage with peers and experts; and (3) peer moderation to facilitate user interactions and provide support. Each user's interaction with these components—ranging from educational engagement to social networking activities—is meticulously tracked and structured in this dataset.
Source Study
Purpose:
Phase:
Trial acronym
Not available
Trial ID
ACTRN12618000616279
Funding
University, Australian Catholic University Research Fund
Scientific enquiries
Prof John Gleeson
Brief Summary
This study is a single group, pre- and post-follow-up pilot trial that aims to evaluate the acceptability and safety of an innovative moderated online social therapy (MOST) intervention called Kindred, designed to support carers of young people who are receiving treatment for borderline personality disorder (BPD) pathology within a specialist early intervention service for youth. Kindred comprises three highly integrated functions within one web-based application. These include: (1) online psych .... Read more
Key Inclusion Criteria
There are two types of participants in this trial: (i) youth with borderline personality disorder (BPD) pathology, i.e. youth with both sub-syndromal and syndromal BPD (referred to as 'clients') and their (ii) family and friends (referred to as carers). Carer participants will: (i) be relatives, legal guardians, or friends of a current Helping Young People Early (HYPE) client; (ii) be aged 18 years or older; (iii) be able to read and converse in English; and (iv) have a minimum of weekly contact .... Read more
Key Exclusion Criteria
Carer participants will be excluded if: (i) they are involved in current legal action against the identified client; (ii) the identified client is receiving treatment from another program at Orygen Youth Health (e.g., the Early Psychosis Prevention and Intervention Clinic); (iii) they don't have access to the internet or an appropriate computer/tablet device. There are no exclusion criteria pertaining to client participants.
Can healthy volunteers participate?
No
Population
Sample Size 20
Min. age 18 Years
Max. age No limit
Sex Both males and females
Condition category borderline personality disorder
Condition code Mental Health
Intervention
Intervention code Treatment: Other , Lifestyle , Behaviour
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 psycho .... Read more
Comparison
Control group Uncontrolled
No control group
Outcomes
Outcome: Acceptability, as measured by: (i) the number of log ins to the Kindred intervention, with acceptability achieved if 50% of carer participants log on at an average rate of more than once per fortnight across each period of their registration in Kindred; (ii) Post-Study Usability Questionnaire (PSSUQ) administered to carers; and (iii) a semi-structured interview designed specifically for this study, informed by the User Experience approach, and conducted with carer par .... Read more
Outcome: Safety, as measured by: (i) a semi-structured interview designed specifically for this study, informed by the User Experience approach, and conducted with carer participants. Kindred will be considered safe if all participants report feeling adequately supported by the moderators at interview. (ii) number of carer participants excluded from the Kindred system during the course of the intervention due to inappropriate conduct. Kindred will be considered safe if two or .... Read more
Will the study consider sharing individual participant data?
Yes
Who can request access to individual participant data?
Data will potentially be available to researchers from not-for profit organisations, commercial organisations or other based in any location. All data requests will be considered by the data custodian and the primary sponsor on a case-by-case basis. Requests must include a methodologically sound proposal. Specific conditions of use may apply and will be specified in a data sharing agreement (or similar) that the requester must agree to before access is granted. For further information, see Orygen data sharing policy.
Are there any conditions for requesting access to individual participant data?
-
What individual participant data might be shared?
Individual participant data not covered above
All of the individual trial-related participant data collected during the trial, after de-identification.
What types of analyses could be done with individual participant data?
Any type of analyses. Assessed on a case-by-case basis.
Are there extra considerations when requesting access to individual participant data?
No
When can requests for individual data be made (start and end dates)?
From: Immediately following publication and for an indefinite time.
To: -