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 is 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 aetiology serving to catalyse 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.
Study aims
This scoping review aims to enhance identification and understanding of the structures in healthcare systems, including the institutional policies, cultural norms and pervasive organizational practices that contribute to stigma [3,6] experienced by consumers with BPD and their carers/families. Our objectives are to explore the international literature on structural stigma specifically in relation to BPD in healthcare systems by providing an overview of the current evidence. This will involve assessing how structural stigma impacts the provision of health services and quality of care for consumers with BPD, their carers/families, and clinicians.
The primary research question is: How does structural stigma associated with a diagnosis of BPD impact on access to health services and quality of care for people with BPD, their carers/families, and clinicians? Secondary research questions will be explored to facilitate a deeper understanding of the key factors, barriers, and mechanisms contributing to the pervasive stigma in healthcare systems experienced by this population, as follows: (1) What are the perspectives and experiences of structural stigma among consumers with BPD, their carers/families, and clinicians? (2) What are the specific drivers and facilitators influencing the manifestation and perpetuation of structural stigma in healthcare systems towards consumers diagnosed with BPD, and the implications for research, policy, and practice?