Summary: Study reveals those with borderline personality disorder and their carers face stigma and discrimination by mental health service providers following suicide attempts and episodes of self-harm.
Source: Flinders University
People with a diagnosis of borderline personality disorder and their carers report experiencing discrimination and stigma when presenting to health services following self-harm or a suicide attempt, leading to inadequate treatment and care for suicide prevention, say authors of a new large-scale review.
Researchers at Flinders University are calling for better use of existing resources to improve health and community-based services and staff training, which would not only boost the health and wellbeing of all Australians but significantly contribute to a reduction in emergency department presentations and hospital admissions.
Led by Pauline Klein, a Casual Academic and PhD Candidate in Flinders University’s College of Medicine and Public Health, the research team undertook a review of the international literature to investigate people with a diagnosis of borderline personality disorder, their carers, and health practitioners’ experiences of health services.
“Our aim was to identify any challenges, gaps, and barriers in health services and supports, as well as recommendations for addressing these issues,” says Ms Klein.
Borderline personality disorder affects one to two percent of the global population but has high rates of self-harm and suicide, leading to frequent presentations to emergency departments and mental health services, the review found.
“Unlike schizophrenia, borderline personality disorder is much less likely to respond to medications, with previous research finding longer-term solutions, such as face to face therapy and ongoing support, better suited to manage the underlying trauma that is thought to have led to the disorder for many of the people who experience it,” says co-author Dr Kate Fairweather, a Mental Health Epidemiologist and Public Health/Health Equity Lecturer at Flinders University.
The review identified significant structural problems in the health system for people with a diagnosis of borderline personality disorder and their carers, including the limited public health services and community group programs available to meet the urgent demand for support.
“We found that the available public health services and programs have long wait lists, and specialist services are not an affordable option for many people with a diagnosis of borderline personality disorder and their families,” says Ms Klein.
“Similarly, health practitioners reported experiencing challenges navigating health services and referral pathways, due to the limited services and supports available.”
The research further suggests that there is a dominant stigmatising culture, particularly in emergency and acute mental health services, that perpetuates misconceptions regarding the legitimacy of the diagnosis of borderline personality disorder as well as its treatability and recovery prospects, leading to reluctance among some health practitioners to diagnose or treat people with this mental health condition.
“Alarmingly, there are consistent reports in the literature indicating that when experiencing a suicidal crisis, people with a borderline personality disorder diagnosis and their carers are treated disrespectfully and denied treatment when presenting to some health services, leading to a lack of support being offered to these patients at a pivotal time when crisis intervention is needed,” says Ms Klein.
“The Clinical Practice Guidelines for the Management of Borderline Personality Disorder, developed in 2012, state that treatment for this disorder is a legitimate use of healthcare resources and that having a diagnosis of borderline personality disorder is never a reason for withholding healthcare to a person.
“These stigmatising experiences lead to patients and their carers facing discrimination and high levels of anxiety when seeking treatment because the presenting condition is not taken seriously, undermining patient care and potentially retraumatising and exacerbating patients’ self-harming behaviour.”
The authors say the results of the review echo existing structural problems impacting other areas of the health system and provide further evidence of a critical need for health reform.
“This should serve as a call to action for governments to prioritise and address these important public health concerns,” says Ms Klein.
“We need a system-wide approach including providing health practitioners who work with people with borderline personality disorder ongoing access to education, training, and supervision to better support them in their role.”
Funding: The research was funded by the Suicide Prevention Research Fund, established by the Federal Government to support research into suicide prevention. The aim of the fund is to support world-class Australian research and facilitate the rapid translation of knowledge into more effective services for individuals, families, and communities. Suicide Prevention Australia manages the fund on behalf of the Federal Government. We also acknowledge our partner organisation, Lived Experience Australia.
Structural stigma and its impact on healthcare for borderline personality disorder: A scoping review
People with Borderline Personality Disorder (BPD) and their carers/families continue to experience structural stigma when accessing health services. Structural stigma involves societal-level conditions, cultural norms, and organizational policies that inhibit the opportunities, resources, and wellbeing of people living with attributes that are the object of stigma. BPD is a serious mental illness characterized by pervasive psychosocial dysfunction including, problems regulating emotions and suicidality. This scoping review aimed to identify, map, and explore the international literature on structural stigma associated with BPD and its impact on healthcare for consumers with BPD, their carers/families, and health practitioners.
A comprehensive search of the literature encompassed MEDLINE, CINAHL, PsycINFO, Scopus, Cochrane Library, and JBI Evidence-Based databases (from inception to February 28th 2022). The search strategy also included grey literature searches and handsearching the references of included studies. Eligibility criteria included citations relevant to structural stigma associated with BPD and health and crisis care services. Quality appraisal of included citations were completed using the Mixed Methods Appraisal Tool 2018 version (MMAT v.18), the Joanna Briggs Institute (JBI) Checklist for Systematic Reviews and Research Syntheses Tool, and the AGREE II: advancing guideline development, reporting, and evaluation in health care tool. Thematic Analysis was used to inform data extraction, analysis, interpretation, and synthesis of the data.
A total of 57 citations were included in the review comprising empirical peer-reviewed articles (n = 55), and reports (n = 2). Studies included quantitative, qualitative, mixed methods, and systematic review designs. Review findings identified several extant macro- and micro-level structural mechanisms, challenges, and barriers contributing to BPD-related stigma in health systems. These structural factors have a substantial impact on health service access and care for BPD. Key themes that emerged from the data comprised: structural stigma and the BPD diagnosis and BPD-related stigma surrounding health and crisis care services.
Narrative synthesis of the findings provide evidence about the impact of structural stigma on healthcare for BPD. It is anticipated that results of this review will inform future research, policy, and practice to address BPD-related stigma in health systems, as well as approaches for improving the delivery of responsive health services and care for consumers with BPD and their carers/families.