Centre for Youth Mental Health - Research Publications

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    A comparison of experiences of care and expressed emotion among caregivers of young people with first-episode psychosis or borderline personality disorder features
    Cotton, SM ; Betts, JK ; Eleftheriadis, D ; Filia, K ; Seigerman, M ; Rayner, VK ; McKechnie, B ; Hulbert, CA ; McCutcheon, L ; Jovev, M ; Bendall, S ; Burke, E ; McNab, C ; Mallawaarachchi, S ; Alvarez-Jimenez, M ; Chanen, AM ; Gleeson, JFM (SAGE PUBLICATIONS LTD, 2022-09-01)
    OBJECTIVE: Caregivers of individuals with severe mental illness often experience significant negative experiences of care, which can be associated with higher levels of expressed emotion. Expressed emotion is potentially a modifiable target early in the course of illness, which might improve outcomes for caregivers and patients. However, expressed emotion and caregiver experiences in the early stages of disorders might be moderated by the type of severe mental illness. The aim was to determine whether experiences of the caregiver role and expressed emotion differ in caregivers of young people with first-episode psychosis versus young people with 'first-presentation' borderline personality disorder features. METHOD: Secondary analysis of baseline (pre-treatment) data from three clinical trials focused on improving caregiver outcomes for young people with first-episode psychosis and young people with borderline personality disorder features was conducted (ACTRN12616000968471, ACTRN12616000304437, ACTRN12618000616279). Caregivers completed self-report measures of experiences of the caregiver role and expressed emotion. Multivariate generalised linear models and moderation analyses were used to determine group differences. RESULTS: Data were available for 265 caregivers. Higher levels of negative experiences and expressed emotion, and stronger correlations between negative experiences and expressed emotion domains, were found in caregivers of young people with borderline personality disorder than first-episode psychosis. Caregiver group (borderline personality disorder, first-episode psychosis) moderated the relationship between expressed emotion and caregiver experiences in the domains of need to provide backup and positive personal experiences. CONCLUSION: Caregivers of young people with borderline personality disorder experience higher levels of negative experiences related to their role and expressed emotion compared with caregivers of young people with first-episode psychosis. The mechanisms underpinning associations between caregiver experiences and expressed emotion differ between these two caregiver groups, indicating that different supports are needed. For borderline personality disorder caregivers, emotional over-involvement is associated with both negative and positive experiences, so a more detailed understanding of the nature of emotional over-involvement for each relationship is required to guide action.
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    A pilot trial of moderated online social therapy for family and friends of young people with borderline personality disorder features
    Gleeson, J ; Alvarez-Jimenez, M ; Betts, JK ; McCutcheon, L ; Jovev, M ; Lederman, R ; Herrman, H ; Cotton, SM ; Bendall, S ; McKechnie, B ; Burke, E ; Koval, P ; Smith, J ; D'Alfonso, S ; Mallawaarachchi, S ; Chanen, AM (WILEY, 2021-12)
    AIM: We evaluated the acceptability, usability and safety of Kindred, a novel online intervention for carers of young people with borderline personality disorder (BPD) using a pre-post pilot trial design. The secondary aim explored whether Kindred use was associated with clinical improvements for caregivers on measures of burden of caregiving, stress, expressed emotion, family communication, disability, coping and knowledge of BPD and for patients on measures of severity of BPD symptoms and level of functional impairment. METHODS: The trial site was the Helping Young People Early program for young people with BPD at Orygen in Melbourne, Australia. Informed consent was obtained from 20 adult carers (i.e., relatives or friends) and 10 young people aged 15-25 with BPD. Kindred, which was available for 3 months, incorporated online psychoeducation, carer-to-carer social networking and guidance from expert and peer moderators. Assessments were completed at baseline and 3 months follow-up. Multiple indicators of acceptability, usability and safety were utilized. RESULTS: Seventeen carers were enrolled in Kindred and eight young people completed baseline measures. A priori acceptability, usability and safety criteria were met. Carer burden, stress, expressed emotion, family communication, quality of life, functioning, coping and perceived knowledge of BPD improved at follow-up. Sixty-six percent of the young people (4/6) reported that they believed Kindred had improved their carers' understanding of BPD. CONCLUSION: Kindred was shown to be acceptable, usable and safe, with encouraging improvements in both carer and young person outcomes. Kindred warrants evaluation of its efficacy via an randomized controlled trial.
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    A study comparing the experiences of family and friends of young people with borderline personality disorder features with family and friends of young people with other serious illnesses and general population adults
    Seigerman, MR ; Betts, JK ; Hulbert, C ; McKechnie, B ; Rayner, VK ; Jovev, M ; Cotton, SM ; McCutcheon, L ; McNab, C ; Burke, E ; Chanen, AM (BMC, 2020-07-22)
    BACKGROUND: Family and friends ('carers') of adults with borderline personality disorder (BPD) and carers of young people with other serious illnesses experience significant adversity but research on the experiences of caring for a young person with BPD features is sparse. This study aimed to: (i) describe the experiences of carers of young people with BPD features; (ii) compare them with published data assessing carers of young people with other serious illnesses and with adults from the general population. METHODS: Eighty-two carers (M age = 44.74, SD = 12.86) of 54 outpatient young people (M age = 18.76, SD = 3.02) who met 3 to 9 DSM-IV BPD criteria completed self-report measures on distress, experiences of caregiving, coping, and expressed emotion. Independent-samples t-tests were employed to compare scores with those reported by convenience comparison groups of general population adults or carers of young people with eating disorders, cancer, or psychosis. RESULTS: Carers of young people with BPD features reported significantly elevated levels of distress, negative caregiving experiences, and expressed emotion, as well as maladaptive coping strategies, compared with general population adults or carers of young people with other serious illnesses. CONCLUSIONS: Carers of young people with BPD features experience elevated levels of adversity compared with their peers in the general adult population. This adversity is similar to, or greater than, that reported by carers of young people with other severe illnesses. Research is needed to clarify factors underlying adverse caregiving experiences and to develop and evaluate interventions to support carers of young people with BPD features. TRIAL REGISTRATION: Prospectively registered with the Australian New Zealand Clinical Trial Registry ACTRN12616000304437 on 08 March 2016, https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=369867.