Structural stigma and its impact on healthcare for consumers with borderline personality disorder: protocol for a scoping review

A dominant stigma discourse, perpetuated within healthcare systems towards people with mental illness [1], continues to undermine the lives of consumers and their carers/families worldwide [2]. Structural stigma in healthcare systems are the “societal-level conditions, cultural norms, and institutional policies that constrain the opportunities, resources, and wellbeing of the stigmatized” ([3] p742). Stigma occurs and is normalized within society [4] through social relationships and interactions [1], including organizations and institutions that generate and perpetuate notions of difference. This includes persons deemed to be “different from others” (sic), in a manner that is widely discrediting [1]. For example, normative structures within healthcare systems develop and shape expectations regarding what is “accepted” behaviour within that context. It is these expectations that historically created marked differences between people with mental illness and the general population; consequently manifesting structural stigma towards people with mental illness [5].

Extant at the macro-social level [2, 3, 6], stigma perpetuates deep-seated stereotypes, prejudice, and discriminatory influences on institutions’ organizational policy, culture, and practice [2, 4]. This includes, for example, clinical policies and practices that contribute to the stigmatization of consumers with mental illness [7, 8]. Policy decisions play a significant role in limiting the availability of services for people with mental illness, which is evident in the inequitable distribution of resources allocated to mental health services relative to general medical services [2]; analogously, less funding is dedicated to research and treatment of BPD, compared with other mental illnesses [9].

Consumers with a diagnosis of BPD are particularly vulnerable to the effect of structural stigma and, indeed, report experiencing greater levels of stigma within health systems compared to their counterparts with other mental illnesses [7, 10]. BPD is a serious mental illness typically characterized by significant traumatic childhood/life events and/or biological etiology serving to catalyze a pattern of instability in domains of interpersonal relationships, self-image, and emotional and behavioral (de)regulation [11]. The global estimates of the prevalence of BPD range from 1 to 5.9% in the general population [12‐15], 10% of the patients in outpatient settings, and 15–22% of the patients in inpatients settings [12, 16, 17]. People with a diagnosis of BPD experience overwhelming distress [18] and also represent a high risk group for suicidality (i.e., suicidal thoughts, self-harm, suicide attempts), with approximately 10% of people with BPD dying by suicide [19]. Recurrent suicidality is often reported to be the reason why people with BPD and their carers/families frequently access healthcare services [20]. Help-seeking, including frequent presentations to emergency departments in response to suicidality, is common among consumers with BPD [20]. Although help-seeking has been identified as a healthy coping strategy for assisting consumers with BPD to cope with overwhelming distress [18], current treatment and care responses are often inadequate in meeting the specific needs of this population [20, 21]. In addition, help-seeking is commonly met by stigma-related experiences in relation to the BPD diagnosis [20]. Findings from a national survey of consumers with BPD and their carers/families identified that currently BPD-related health services are limited and constitute poor quality care, especially during times of crisis [22, 23]. In addition, over 50% of carers reported instances where the person they care for attempted to seek help for suicidality, but were refused hospitalization by some health providers [23]. These discriminatory experiences exacerbate and re-traumatize consumers’ distress [15], reinforcing consumers’ intense feelings of anxiety and hopelessness [24] and perpetuating the cycle of problems carers/families and clinicians seek to manage or treat [25].

Studies examining clinicians’ attitudes towards consumers with BPD highlighted the challenges experienced by clinicians working with this population [7, 26], particularly BPD consumers who present to health services in crisis [26]. A study assessing mental health staff attitudes towards consumers with BPD found that over 80% of staff viewed this population as difficult to work with, and indeed, more difficult to treat than consumers with other mental illnesses [10]. Clinicians disclosed experiencing strong negative emotions towards consumers with BPD, such as feelings of frustration, anger [27], and powerlessness [26]. In addition, some clinicians have described consumers with BPD as manipulative—that is, clinicians believe people with BPD have more control of their emotions and behaviors than consumers with other mental illnesses; and they misbehave—rather than their behavior being an expression of mental illness [28, 29]. Moreover, there are reports of some clinicians denying people with BPD treatment [15, 30]. These findings support recommendations for BPD-specific education and training to enhance clinicians’ knowledge and practice in relation to their treatment approach to working with this population [15]. Notably, research shows that clinicians are interested in attending training to help them to more effectively treat consumers with BPD [7, 8, 10].

Overall, stigma associated with restricted access to health services [2, 6, 31] and suboptimal quality of care [15, 29] undermine the diagnosis, treatment, and health outcomes of BPD consumers [32]. A recent systematic review exploring stigma at the interface of mental health care identified several fundamental processes contributing to the creation and perpetuation of stigma towards people with BPD. These included “stigma related to diagnosis and disclosure, perceived untreatability, and demand for services; stigma as a response to feeling powerless; stigma due to preconceptions of the BPD patient; and low BPD health literacy” [26] (p4-16). Recommendations for addressing these complex health inequities and overcoming stigma in mental health settings involved the need to enhance empathy among clinicians through the development of a conceptual framework for understanding the complexities of BPD-based behaviors, and the resultant stigma, within healthcare interactions among consumers with BPD, their carers/families, and clinicians [26].

The decision to conduct a scoping review was based on the premise that while there is a diverse range of literature available on the lived experiences of BPD-related stigma in health settings among BPD consumers, their carers/families, and clinicians; there is limited knowledge on the mechanisms that influence structural stigma in healthcare systems, and the impact that these processes have on the delivery of quality services to consumers with BPD and their carers/families. Conducting this scoping review will allow us to broadly map the extent of the evidence relating to BPD-related structural stigma in healthcare systems and identify solutions to address the systemic policies, procedures, and practices that contribute to stigma-related outcomes.

This review protocol was registered within the Open Science Framework (registration ID: https://​osf.​io/​bhpg4) and is being reported in accordance with the reporting guidance provided in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) statement [33] (see checklist in Additional file 1). The scoping review methodology will be conducted in accordance with the JBI guidelines for scoping reviews [34] and Arksey and O’Malley’s [35] five-step process for scoping reviews.

The purpose of this scoping review is to map existing international literature on structural stigma in healthcare systems specific to BPD and synthesize the findings on the impact of stigma on the delivery of responsive healthcare services for consumers with BPD and their carers/families. Evidence has indicated that institutionalized stigma affects consumers with BPD—particularly those where a crisis results in their presentation to health services, such as emergency departments—more than consumers with other mental illnesses [4, 7, 22, 24]. By completing this review, we hope to gain a better understanding of consumers, their carers/families, and clinicians lived experiences of stigma, and the mechanisms that perpetuate stigma in healthcare systems. Understanding the lived experiences of consumers with BPD and their carers/families can help to identify the specific needs of this population as well as the current gaps in health services [22, 24]. Exploring clinicians lived experiences of working with consumers diagnosed with BPD will also be beneficial in broadening our understanding of the specific challenges, barriers, and gaps in knowledge and skills experienced by various healthcare providers [8, 10]. This can assist in developing recommendations for BPD-related education and training for clinicians to enhance the delivery of effective services that meet the needs of consumers with BPD and their carers/families [26]. Triangulating perspectives and lived experiences of stigma among consumers, carers/families, and clinicians has been identified as a relatively new approach to conceptualize the complex mechanisms that impact on clinical practice in healthcare systems [39]. Further, this review will inform future research, policy, and practice relating to stigma reduction strategies that can be adopted to improve quality person-centered care and consumer outcomes [18]. As this scoping review is one of two intended reviews designed to examine BPD-related stigma in healthcare systems, these findings will also inform a systematic review on the impact of anti-stigma interventions in addressing BPD-related prejudice in healthcare settings [28].

Potential limitations in this review may involve the exclusion of full-text publications that are unable to be accessed free of charge, and older dated publications may be missed. No anticipated operational issues in relation to the completion of scoping review processes are expected. The scoping review methodology will enable us to make relevant amendments (and document those changes) to the scoping protocol as required.

Findings from this scoping review will make a valuable contribution towards recommendations for addressing BPD-related stigma in healthcare systems to improve the delivery of person-centered care and health outcomes for this population [8, 40]. Findings from this review will be disseminated through publications in peer-reviewed journals, conferences, and by partner organizations. The proposed scoping review will be reported in accordance with the reporting guidance provided in the PRISMA extension statement for scoping reviews (PRISMA-ScR) [41]. Any amendments made to this protocol when conducting the review will be outlined and reported in the Open Science Framework and in the final manuscript.