What do carers of people with high-grade glioma perceive could improve their preparedness to care, and what additional support do they require?

Background: Concerning levels of stress, strain, and poorer mental health are observed in family carers of patients diagnosed with high-grade glioma (HGG). Understanding the reported unmet needs of these carers will enable future interventions to address such needs to improve their preparedness for care and well-being. In this secondary analysis, we aimed to explore: (i) what carers of people with HGG perceive could improve their preparedness to care; and (ii) what needs carers reported they required additional support with. Methods: Responses from 188 carers of patients with HGG participating in a randomized controlled trial of the Care-IS intervention were analyzed to identify reported unmet needs. Of this larger sample, 92 participants answered a qualitative question seeking to identify perceived unmet needs in carer preparedness over 12 months. These responses comprised the data for the current secondary analysis. Content analysis was used to analyze the qualitative data and observe trends across participant responses. Results: Five overarching themes were identified: carer needs, providing emotional and practical care, coping with uncertainty, coping with the consequences of illness progression, and processing and supporting end-of-life care. Notably, the content analysis identified differences in response numbers between groups in the Care-IS trial, particularly with the control group having more needs regarding illness progression and end-of-life care. Conclusions: Future interventions aimed at improving the well-being and preparedness of carers of people with HGG should consider providing better support centered on carer needs, their changed circumstances, living with uncertainty, and care transition.

Psychopathology and psychosocial functioning among young people with first-episode psychosis and/or first-presentation borderline personality disorder.

BACKGROUND: One in five young people with first-episode psychosis (FEP) also presents with borderline personality disorder (BPD) features. Among people diagnosed with BPD, auditory verbal hallucinations occur in 29-50 % and delusions in 10-100 %. Co-occurrence of psychotic symptoms and BPD is associated with greater clinical severity and greater difficulty accessing evidence based FEP care. This study aimed to investigate psychotic symptoms and psychosocial functioning among young people presenting to an early intervention mental health service. METHOD: According to the presence or absence of either FEP or BPD, 141 participants, aged 15-25 years, were assigned to one of four groups: FEP, BPD, combined FEP + BPD, or clinical comparison (CC) participants with neither FEP nor BPD. Participants completed semi-structured diagnostic interviews and interviewer and self-report measures of psychopathology and psychosocial functioning. RESULTS: The FEP + BPD group had significantly more severe psychopathology and poorer psychosocial functioning than the FEP group on every measure, apart from intensity of hallucinations. Comparing the FEP or BPD groups, the BPD group had greater psychopathology, apart from intensity of psychotic symptoms, which was significantly greater in the FEP group. These two groups did not significantly differ in their overall psychosocial functioning. Compared with CC young people, both the FEP + BPD and BPD groups differed significantly on every measure, with medium to large effect sizes. CONCLUSIONS: Young people with co-occurring FEP and BPD experience more severe difficulties than young people with either diagnosis alone. This combination of psychosis and severe personality pathology has been longitudinally associated with poorer outcomes among adults and requires specific clinical attention.

Psychosocial interventions for personality and behavior changes in adults with a brain tumor: A scoping review.

Background: The objective of this scoping review was to describe the intervention characteristics and effectiveness of psychosocial interventions aimed at managing personality and behavior changes in people with brain tumors. A secondary objective was to explore if these interventions had an impact on outcomes for carers. Personality and behavior changes considered included aggression, apathy, paranoia, disinhibition, and emotional lability. Methods: This review was conducted following the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. Searches were conducted in PsycINFO, CINAHL, Medline (Ovid), and Scopus. We synthesized studies published from 1996 to 2022 that evaluated interventions to manage brain tumor related personality and behavioral changes in adults. A data extraction tool were used based on the Joanna Briggs Institute template. Results are presented in a summary table and a narrative synthesis was conducted. Results: Three thousand and five hundred and ninety-four records were screened. Title and abstract screening resulted in 29 potentially eligible studies. Full screening excluded 24 articles and 5 interventions met the inclusion criteria. The interventions were diverse in duration, delivery modality, setting, and participation (eg, the patient individually or patient and carer). The interventions reported improvements in the targeted personality and behavior change symptoms for patients with primary brain tumors. Four studies included a measure of personality and behavior change symptoms and two studies included a measure of outcomes for carers and reported improvements in carer knowledge and a reduction in carer distress. All studies sampled fewer than 100 participants. Studies had limited follow-up data and different tools were used to assess the presence and nature of personality and behavior changes. Conclusions: There is a dearth of psychosocial interventions to support patients and their carers to manage brain tumor related personality and behavior changes.

Bereavement outcomes of carers of patients with high grade glioma: Experiences of support before and after the death.

Carers of people with High Grade Glioma (HGG) completed a survey assessing their anxiety, depression, and grief in addition to open-ended questions exploring their experiences of support pre- and post-death (N = 25). One-third reported borderline or clinical levels of anxiety, depression, and grief related distress. Given the poor prognosis and rapid deterioration of patients with HGG, the findings highlight the importance of sensitive communication about prognosis early in the disease trajectory, information tailored to disease stage, the initiation of a referral to psychological support services, and timely discussions about the preferred place of care and death.

Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results.

BACKGROUND: High-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress. METHODS: We conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients' combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain. RESULTS: We randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model ß = 2.85, 95% CI 0.76-4.93) and all follow-up timepoints including 12 months (model ß = 4.35, 95% CI 2.08-6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes. CONCLUSIONS: This intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.

Sexuality and sexual health among female youth with borderline personality disorder pathology.

AIM: Borderline personality disorder (BPD) is a severe mental disorder that is characterized by unstable relationships, impulsive behaviours and identity disturbance. BPD usually has its onset between puberty and young adulthood and presents disproportionately among females in clinical settings. Taken together, this makes young women with BPD a particularly vulnerable group with regard to healthy psychosexual development. It was hypothesized that female youth with BPD pathology would be more likely to score worse on measures of sexual health and safety, and to show greater uncertainty in sexual identity formation. METHODS: Fifty 15 to 24 yr-old females with 3 or more Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-IV) BPD criteria were compared with 204 females from a nationally representative sample. Both groups were interviewed using a comprehensive interview for sexual health and relationships. The patient group completed a structured diagnostic interview. RESULTS: Young women with borderline personality pathology engaged in sexual relationships at a younger age, with more sexual partners in the previous year, in more casual relationships. They were more likely to practice unsafe sex for their first sexual experience, to be coerced into unwanted sexual activity, to be unclear about their sexual identity or their sexual attraction, and to report worse overall health status. CONCLUSIONS: BPD pathology in youth is associated with poor sexual health and safety, and uncertainty in sexual identity formation. These findings support the need for assessment of the sexuality and sexual health of youth with BPD, along with the need for routine screening in sexual health services for BPD features among high-risk youth.

"Something that happens at home and stays at home": An exploration of the lived experience of young carers in Western Australia.

There are approximately 350,000 young carers in Australia, yet their experience is not well understood. Young carers face adversities and disenfranchisement by being a young person in a caring role, and the role can affect other areas of their lives. We explored the lived experiences of young carers, aged 14-25 years (N = 13), from Western Australia through in-depth semi-structured interviews. A phenomenological approach was adopted. A thematic analysis of the transcribed interview data revealed four key themes. "Lessons from the experience" articulates the perceived benefits of the role and the themes: "navigating competing demands," "desire for normalcy" and "lost in the system" capture the struggles and complexities associated with being a young carer. Although there are challenges to being a young carer, it is something that young carers report can be beneficial and something that is done for those they love.

Borderline personality features and development of psychosis in an 'ultra high risk' (UHR) population: a case control study.

AIMS: There is clinical uncertainty as to whether borderline personality disorder (BPD) traits in those with an 'at risk mental state' have an effect on the risk of 'transition' to psychosis. We aimed to investigate the relationship between baseline BPD features, risk of transition and type of psychotic disorder experienced. METHOD: This is a case-control study of 'ultra high risk' (UHR) for psychosis patients treated at the clinic, between 2004 and 2007. 'Cases' were UHR individuals who made the 'transition' to full threshold psychotic disorder within 24 months; 'control' group was a matched UHR sample who had not developed a psychotic disorder at 24 months. Individuals were matched on time of entry to the clinic, age and gender. Diagnostic and statistical manual of mental disorders, fourth edition (DSM-IV) BPD features were assessed from clinical assessments using a structured instrument (Structured Clinical Interview for DSM-IV Axis II Disorder for BPD (SCID-II BPD)). Psychosis diagnosis following transition was rated from the clinical files using the operational criteria in studies of psychotic illness (OPCRIT) computer algorithm. The number of BPD traits and number with full threshold BPD were compared in those who developed psychosis and those who did not. RESULTS: We analysed data from 48 cases and 48 controls. There was no statistically significant difference in the rate of transition to psychosis for those with baseline full-threshold BPD, compared with those without BPD. The number of BPD traits or number with full threshold BPD did not differ by psychosis diagnosis grouping. CONCLUSIONS: Co-occurring BPD or BPD features does not appear to strongly influence the risk of short-term transition to psychosis or the risk of developing a non-affective psychotic disorder in this population.

Rupture resolution in cognitive analytic therapy for adolescents with borderline personality disorder.

BACKGROUND: Ruptures are potential change events in therapy that might result in positive or negative consequences for the therapeutic alliance and outcome. Alliance ruptures and premature drop-out are common with clients diagnosed with borderline personality disorder, limiting treatment effectiveness. OBJECTIVE: To test a nine stage model of rupture resolution in cognitive analytic therapy (CAT) with adolescents. METHOD: The validation phase of task analysis was employed to test the rupture resolution model and to relate handling of ruptures to outcome using quantitative and qualitative analysis of transcripts. Eighteen ruptures and resolution attempts were intensively examined across three good and two poor outcome sessions, as rated by clients. The number of model stages employed by therapists was related to outcome. RESULTS: Sessions evaluated as poor or good by clients could be distinguished according to the extent to which therapists used model stages. Treatment outcome was significantly associated with number of model stages included by therapists. CONCLUSION: Competent resolution of ruptures in CAT is dependent on therapists' inclusion of stages of the model, providing validation for the model, and demonstrating that effective rupture resolution might be related to treatment outcome. Ruptures and their resolution are likely to be key events in psychotherapy process.

Early intervention for adolescents with borderline personality disorder: quasi-experimental comparison with treatment as usual.

OBJECTIVE: The aim of the present study was to compare the effectiveness of specialized team-based early intervention for borderline personality disorder (BPD) with treatment as usual. METHOD: In a quasi-experimental design, 32 outpatients who received historical treatment as usual (H-TAU) were compared with 78 participants from a recently published randomized controlled trial of cognitive analytic therapy (CAT; n = 41) versus manualized good clinical care (GCC; n = 37), conducted in a specialized early intervention service for BPD (the Helping Young People Early (HYPE) programme). All participants were 15-18-year-old outpatients who fulfilled 2-9 DSM-IV BPD criteria. It was predicted that, compared with H-TAU, HYPE + GCC and HYPE + CAT would show greater reductions in psychopathology and parasuicidal behaviour and greater improvement in global functioning over 24 months. RESULTS: At 24 month follow up: (i) HYPE + CAT had lower standardized levels of, and a significantly faster standardized rate of improvement in, internalizing and externalizing psychopathology, compared with H-TAU; and (ii) HYPE + GCC had lower standardized levels of internalizing psychopathology and a faster rate of improvement in global functioning than H-TAU. HYPE + CAT yielded the greatest median improvement on the four continuous outcome measures over 24 months. No adverse effects were shown with any of the treatments. CONCLUSIONS: Specialized early intervention for subsyndromal or full-syndrome BPD is more effective than TAU, with HYPE + CAT being the most effective intervention. Reform of existing services using the HYPE model might yield substantial improvements in patient outcomes.

Early intervention for adolescents with borderline personality disorder using cognitive analytic therapy: randomised controlled trial.

BACKGROUND: No accepted intervention exists for borderline personality disorder presenting in adolescence. AIMS: To compare the effectiveness of up to 24 sessions of cognitive analytic therapy (CAT) or manualised good clinical care (GCC) in addition to a comprehensive service model of care. METHOD: In a randomised controlled trial, CAT and GCC were compared in out-patients aged 15-18 years who fulfilled two to nine of the DSM-IV criteria for borderline personality disorder. We predicted that, compared with the GCC group, the CAT group would show greater reductions in psychopathology and parasuicidal behaviour and greater improvement in global functioning over 24 months. RESULTS: Eighty-six patients were randomised and 78 (CAT n=41; GCC n=37) provided follow-up data. There was no significant difference between the outcomes of the treatment groups at 24 months on the pre-chosen measures but there was some evidence that patients allocated to CAT improved more rapidly. No adverse effect was shown with either treatment. CONCLUSIONS: Both CAT and GCC are effective in reducing externalising psychopathology in teenagers with sub-syndromal or full-syndrome borderline [corrected] personality disorder. Larger studies are required to determine the specific value of CAT in this population.

Screening for borderline personality disorder in outpatient youth.

UNLABELLED: Young people with borderline personality disorder (BPD) commonly seek help but often go unrecognized. Screening offers a means of identifying individuals for more detailed assessment for early intervention and for research. AIMS: This study compared the McLean Screening Instrument for Borderline Personality Disorder (MSI-BPD), Borderline Personality Questionnaire (BPQ), the BPD items from the International Personality Disorder Examination Screening Questionnaire and the BPD items from the Structured Clinical Interview for DSM-IV Axis II disorders (SCID-II) Personality Questionnaire. METHOD: 101 outpatient youth (aged 15-25 years) completed the screening measures and were interviewed, blind to screening status, with the SCID-II BPD module. The screening measures were readministered two weeks later to assess test-retest reliability. RESULTS: All four instruments performed similarly but the BPQ had the best mix of characteristics, with moderate sensitivity (0.68), the highest specificity (0.90), high negative predictive value (0.91) and moderate positive predictive value (0.65). Compared to the other three instruments, the BPQ had the highest overall diagnostic accuracy (0.85), a substantially higher kappa (0.57) with the criterion diagnosis, the highest test-retest reliability (ICC = 0.92) and the highest internal consistency (alpha = 0.92). The only clear difference to emerge in the Receiver Operator Curve (ROC) analysis was that the BPQ significantly outperformed the MSI (p = 0.05). CONCLUSION: Screening for BPD in out-patient youth is feasible but is not a replacement for clinical diagnosis.