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

Abstract

Background

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.

Methods

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.

Results

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.

Conclusion

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.

Review Registration: Open Science Framework (https://osf.io/bhpg4).

Background

Consumers with a diagnosis of BPD and their carers/families are often confronted with structural stigma when accessing health services for their mental health condition [1,2,3,4]. Structural stigma is defined as “the societal-level conditions, cultural norms, and institutional policies that constrain the opportunities, resources, and wellbeing of the stigmatized” ([5] p.742). Stigma is a multi-level phenomenon that occurs within various interpersonal, organisational, and structural contexts causing health inequities in accessing services and supports [5], and poor health outcomes [6] for consumers with BPD [3, 7,8,9] and their carers/families [1, 2, 10, 11]. BPD is a serious mental illness associated with longstanding and persistent patterns of instability in psychosocial functioning, including problems regulating emotions, self-image, interpersonal relationships, impulsivity, and suicidality [12]. The global lifetime prevalence of BPD is approximately 1–2% in the general population [13,14,15,16]; affecting 10% of consumers in outpatient settings, and up to 22% of consumers in inpatient settings [13, 17, 18].

BPD is a complex and contentious diagnosis [19], partly because evidence is yet to determine the exact cause of the condition. However, the trajectory is likely to be linked to genetic and environmental factors including emotional vulnerability, childhood abuse [20, 21], and insecure attachment. Some people with BPD may have experienced traumatic childhood events which can impact their ability to form healthy trusting relationships and develop the resilience needed to cope with the pressures of everyday life [22]. While trauma is not necessarily implicated in the suicidality (i.e., self-harm, suicidal ideation, and suicide attempts) common in BPD [12], people with BPD are a high-risk group for suicide [23] which is often triggered by heightened emotions and repetitive cycles of intense distress and crises [24, 25]. Chesney et al. [26] conducted a meta-review on the risk for suicide mortality associated with major psychiatric disorders and found that the suicide risk among consumers with BPD was 45% greater than the general population, and disproportionately higher than other psychiatric disorders. Other studies investigating the prevalence of suicidality found that 75% of people with BPD attempted suicide [27], and up to 10% of people with BPD died by suicide [28].

Recurrent presentations to health services resulting from suicidality among this population place increased demand on health systems [27, 29]. This is particularly evident in emergency services; however, the care provided is often not adequate for meeting the complex needs of consumers with BPD [10]. A recent study investigating the prevalence of mental health presentations reported that consumers with personality disorders represented 20.5% of emergency service presentations and 26.6% of inpatient admissions. Further, consumers with personality disorders were 50% more likely to access health services while experiencing crisis within 28 days of their last presentation, relative to consumers with other mental health disorders [30]. Another study investigating health service utilization found that specialist psychotherapy services, day treatments, residential programs, outpatient, and inpatient medical services were accessed at higher rates by consumers with BPD, than by other consumers [29]. Findings from a community sample also found that 75% of people with BPD accessed help from a range of health professionals including physicians, therapists, and counsellors for their mental illness which may reflect the co-occurring disorders and complexity associated with BPD [31]. The high prevalence of chronic suicidality and crisis presentations to health services by consumers with BPD [15, 27, 28] has contributed to this disorder becoming one of the most highly stigmatized and marginalized mental health conditions in health systems [32, 33].

There is a growing body of research exploring the experiences of BPD-related stigma among consumers with BPD [3, 7,8,9, 34, 35] and their carers/families [1, 2, 11] when accessing health services. Consumers with BPD consistently report receiving suboptimal levels of care from health services including not being believed or dismissed in relation to the nature and severity of their presentation [3]. These experiences appear to stem from various misconceptions surrounding BPD and suicidality [36]. There are also reports of interactions of conflict between consumers with BPD, their carers/families, and health practitioners [37]. In some instances, consumers with BPD report that they are refused treatment when presenting to health services in distress [38, 39]. Carers/families of consumers with BPD report experiencing anxiety and grief associated with caring for their family member with BPD. Carers/families also experience substantial ongoing financial burdens [11, 40] associated with the costs of private health services including evidence-based therapies and hospitalization of the person with BPD for whom they provide care. Access to clinical and community-based services and supports for consumers with BPD and their carers/families are limited, with current services and supports not adequately meeting the demand for treatment of BPD [41], making it difficult for consumers with BPD and their carers/families to receive treatment and support when needed [3, 4].

There are also concerns regarding the capacity of existing health services to meet the complex needs of consumers with BPD and their carers/families [34, 35, 41, 42]. This stems from the insufficient allocation of resources and funds to support BPD-related research, health service provision [41, 43, 44], education and training, and supervision for health practitioners working with consumers with BPD [45,46,47,48,49,50,51,52,53,54,55]. In addition, there are concerns regarding some practitioners’ stigmatizing beliefs, attitudes, and practices towards BPD [38, 39, 54]. Ungar et al.’s [56] study examined mental health practitioners’ beliefs and attitudes to treating consumers with BPD and found that more than 80% of staff agreed that consumers with BPD were more difficult to work with than consumers with other mental health disorders. Deans et al.’s [57] study found that 89% of psychiatric nurses (n = 47) agreed with the statement that consumers with BPD are ‘manipulative’. These findings are consistent with other studies exploring health practitioners’ perceptions of BPD [58, 59].

While there is vast literature on the perceptions and experiences of stigma among consumers with BPD [3, 9, 34, 60,61,62,63,64,65,66,67,68,69,70,71,72], their carers/families [1, 2, 4, 10, 11, 40, 73], and health practitioners [19, 38, 51,52,53,54,55, 57, 74,75,76,77,78,79,80,81,82,83,84,85,86,87,88,89,90,91], currently there is limited knowledge about the structural mechanisms contributing to BPD-related stigma within health systems, and their impact on the delivery of services and care to consumers with BPD and their carers/families. Exploring the body of literature addressing stigma in relation to BPD will allow us to identify the existing structural problems in healthcare systems and inform recommendations for addressing these significant public health concerns [29].

Aim and research questions

The aim of this scoping review is to identify, map, and provide a broad overview of the international literature concerning structural stigma associated with BPD and its impact on healthcare for consumers with BPD, their carers/families, and health practitioners. This includes understanding how structures in health systems such as institutional policies, cultural norms, and organizational practices affect the availability and accessibility of quality health services and care for consumers with BPD and their carers/families. The primary research question addresses: How does structural stigma relevant to the diagnosis of BPD impact on the provision of health services and care for people with BPD, their carers/families, and health practitioners? Secondary research questions were also explored to gain a deeper understanding of the mechanisms, challenges, and barriers influencing BPD-related stigma in health systems. These were: (1) what are the perspectives and lived experiences of structural stigma among consumers with BPD, their carers/families, and health practitioners? (2) What are the specific drivers influencing the manifestation and perpetuation of BPD-related structural stigma in health systems, and the implications for research, policy, and practice? [92].

Methods

The scoping review was registered within the Open Science Framework (registration ID: (https://osf.io/bhpg4). A scoping review methodology was chosen to achieve the aim of this review based on its broad application to mapping, exploring, and synthesizing extant international literature and identifying gaps in knowledge [93]. Scoping review approaches are useful for understanding the complexity of concepts relating to healthcare and informing evidence-based practice [94]. The review process followed JBI guidelines for scoping reviews [95] and Arksey and O’Malley’s [96] five-step framework for scoping reviews: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting data; and (5) collating, summarizing, and reporting the results.

Identifying relevant studies

We undertook a comprehensive systematic search of electronic databases for peer-reviewed papers published from inception to February 28th 2022 using MEDLINE (Ovid), CINAHL (EBSCO Connect), PsycINFO (Ovid), Scopus (Elsevier), Cochrane Library (Wiley), and JBI Evidence-Based Database (Ovid). A search of grey literature using Google search engine was conducted to identify other relevant citations such as clinical practice guidelines for BPD. The references of included citations from both the peer-reviewed and grey literature searches were hand-searched to identify any additional relevant citations. Additional file 1 presents the PsycINFO search strategy and the grey literature key words. Search terms were developed as relevant to the three categories of key search terms: (a) BPD; (b) stigma; and (c) crisis care. Draft searches were executed in PsycINFO (Ovid) to test the search text word terms and subject heading combinations. Search terms were refined during iterative test searches resulting in a comprehensive search strategy to identify all existing peer-reviewed articles relating to BPD-related stigma associated with crisis presentations (i.e., a crisis relating to self-harm or suicidality) across various population groups (i.e., consumers with BPD, carers/families of people with BPD, and health practitioners) and healthcare settings (e.g., mental health and emergency services). Risk of selection bias was minimized by using multiple search methods. The eligibility criteria (Table 1), based on the Population-Concept-Context (PCC) framework [95], guided the study selection process during screening.

Table 1 Eligibility criteria

Study selection

All citations identified from the comprehensive search were collated and uploaded into Endnote V.9. Citations were then uploaded into Covidence and de-duplicated by the lead author (PK). Citation screening and selection were undertaken using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement [97] (Additional file 2). Two independent reviewers (PK and AKF) screened the titles, abstracts, and full-text citations against the defined selection criteria to identify relevant studies. Full-text citations of selected studies were retrieved via Covidence and assessed against the inclusion criteria. Ineligible citations were omitted in accordance with the exclusion criteria (Table 1). Discrepancies in reviewer decisions regarding the inclusion of studies at both the title/abstract screening stage and the full-text stage were assessed and resolved by a third reviewer (SL) who had clinical expertise in mental health.

Charting the data

The type of information to be extracted from the eligible citations was discussed and consensus reached following meetings held by the research team (PK, AKF, SL). Data identified for inclusion in this review were extracted into a charting table. The charting table of included studies used the following fields: author, year, country; quality rating; population data; aim/purpose; study design; methods; and main findings (Table 2). Data extraction was led by the first author (PK) and checked and revised by the second author (AKF).

Table 2 Data extraction of study characteristics on borderline personality disorder related structural stigma in healthcare systems

Quality appraisal

Quality appraisal of all citations was undertaken to reduce the risk of bias. The MMAT v.18 checklist [98] was used to determine methodological quality of the quantitative, qualitative and mixed methods studies for inclusion in this review. The JBI Checklist for Systematic Reviews and Research Syntheses tool [99] was used to appraise methodological rigor of the reviews; the AGREE II: advancing guideline development, reporting, and evaluation in health care tool [100] was used to appraise the Clinical Practice Guidelines for the management of BPD (referred to as Guidelines) [16]. Meetings were held by the research team (PK, AKF, SL) to discuss the application of items within the quality appraisal tools and processes for assessing the methodological quality of the included citations. This included establishing an agreed cut-off criteria to exclude low quality studies in accordance with the eligibility criteria. Initially, one reviewer (PK) conducted the quality appraisals of the citations. Two reviewers (PK and AKF) then met to review the quality appraisals of the studies and highlight any concerns; where issues were identified, resolution was achieved through discussion. Although a third reviewer (SL) was available to resolve any discrepancies, no further resolution was required.

Collating and summarizing findings

Data were collated, analysed, and synthesized using Braun and Clarke’s [101] Thematic Analysis. Results of the review were synthesized into a narrative summary of the study aims, research questions, and eligibility criteria (PCC). Data analyses involved: (1) quantitative data being summarized using descriptive statistics and frequencies [102]; and (2) Thematic Analysis of qualitative data to organize, categorize, and interpret key themes and patterns emerging from the data [101]. Trustworthiness and rigor of data abstraction and synthesis were established using a data analysis table that captured the categories, codes, and key findings/themes on the impact of structural stigma on healthcare for consumers with BPD, their carers/families, and health practitioners. Triangulating the perspectives and lived experiences of the relevant populations (i.e., consumers with BPD, their carers/families, and health practitioners) has been identified as an effective approach to establishing a comprehensive understanding of the complex nature of health systems [103].

Results

Data characteristics

The initial database searches yielded 4132 publications. An additional 33 (n = 33) records were identified via other sources. Following the removal of duplicates, citation titles and abstracts were screened (n = 3566), and full-text records (n = 135) were retrieved and assessed for eligibility. Of these records, 78 (n = 78) were excluded when assessed against the inclusion criteria and the quality appraisal criteria. In total, 57 (n = 57) citations that aligned with the inclusion criteria and study aims were incorporated into this review. Search results including reasons citations were excluded are presented in a PRISMA Flow Diagram (Fig. 1). Most of the citations comprised peer-reviewed published studies (n = 55), and two (n = 2) non-published reports. The majority of the citations examined health practitioners' stigmatizing attitudes and practice specific to BPD (n = 36, 63%). Some citations focused on BPD-related educational interventions designed to modify health practitioners' attitudes and practice in treating BPD (n = 9, 5%) [45, 47,48,49,50,51,52,53, 55]. Table 2 presents data characteristics of included citations. Table 3 summarizes study characteristics of included studies.

Fig. 1

PRISMA flowchart of the selection of citations for the scoping review

Table 3 Summary of key study characteristics

Methodological quality

Critical appraisal of all included citations found that the quality ratings of the quantitative studies were moderate (n = 9), [3, 4, 49, 53, 76, 104,105,106,107], and moderately high (n = 8) [48, 50, 55, 57, 77, 85, 88, 108]. The quality of most qualitative studies was rated as high (n = 24) [1, 2, 8, 19, 39, 42, 45, 47, 62, 68, 69, 72, 73, 84, 89, 109,110,111,112,113,114,115,116,117], or moderately high in quality (n = 4) [7, 65, 118, 119]. One (n = 1) qualitative study was deemed moderate in quality [120]. The quality of the mixed methods studies (n = 2) was determined as moderate [86] and moderately high [51].

Reviews were of moderate (n = 6) [10, 33, 35, 52, 71, 123], or high quality (n = 1) [34], and reports were moderately high in quality (n = 2) [16, 107] (Table 2).

Key findings

Synthesis of the review findings identified several extant macro- and micro-level structural mechanisms, challenges, and barriers associated with BPD-related stigma in health systems. Structural problems that contribute to BPD-related stigma were evident across multiple levels of the health sector including system/service-, practitioner-, and consumer-levels. These results highlight the complex and contentious nature of BPD and healthcare across the following broad themes (and sub-themes) comprising: structural stigma and the BPD diagnosis (subthemes—legitimacy of the BPD diagnosis, reluctance to disclose a BPD diagnosis, discourse of untreatability); BPD-related stigma surrounding health and crisis care services (subthemes—BPD and healthcare, practitioner-consumer interactions). Each of these themes and subthemes are discussed below.

Structural stigma and the BPD diagnosis

This theme is centred around the dominant stigma discourse and misconceptions within health systems regarding the BPD diagnosis, its disclosure to the consumer, treatment options, and prognosis for recovery from the perspectives of health practitioners [16, 19, 33, 34, 108, 114, 115, 118, 119, 123], consumers with BPD [3, 34, 62, 68, 111, 112, 123], and carers/families [4, 10, 62, 123]. The main structural challenges and barriers associated with the diagnosis of BPD in health systems include: uncertainty whether BPD is a legitimate mental illness [19, 84, 114,115,116, 118]; concerns regarding the disclosure of a BPD diagnosis [65, 108, 115]; and perceptions that BPD is an untreatable condition [114, 116, 118]. Consequently, consumers with BPD are often denied evidence-based treatment [3, 4, 114, 115, 118] and routed out of the health system through a process called de-medicalization—making it difficult for these consumers to access health services and support [114].

Legitimacy of the BPD diagnosis

The BPD diagnosis and its legitimacy as a serious mental illness is actively contested in some health systems [19, 35, 114], which can create barriers to consumers with BPD accessing health services [16, 107]. Sulzer et al.’s [114] qualitative study found that some health practitioners viewed consumers with BPD from a moral stance, rather than the consumer being genuinely unwell; and consequently denied these consumers treatment. For instance, participants described consumers with BPD as morally deviant and viewed self-harming behaviour as attention-seeking, rather than perceiving it as a symptom of their underlying mental illness and associated distress. Nehls et al.’s [112] qualitative study suggest that some health practitioners held misconceptions regarding the disorder such as associating it with a flaw in character, rather than it being a legitimate illness. Health practitioners also believed consumers with BPD were responsible for their presentation and more in control of their actions than consumers with other mental health conditions [112, 114]. These misconceptions regarding the validity and reliability of the BPD diagnosis historically stem partly from the separation of BPD (and all personality disorders) into Axis II of the Diagnostic and Statistical Manual of Mental Disorders (DSM) [12]. This distinguished BPD from other mental health disorders such as schizophrenia which we understand has a clear biological aetiology and response to psychoactive medication [114]. Psychiatrists working with adolescents in Child and Mental Health Services also expressed concerns regarding the legitimacy of the BPD diagnosis for adolescents given the DSM criteria are adult-specific and do not account for the developmental stages of adolescents [19].

Consumers with BPD [3, 7, 65, 69, 71, 72, 112, 117] and their carers/families [1, 2, 4, 10, 42, 62, 73, 123] have consistently reported experiencing discrimination and stigma from health services in response to the BPD diagnosis. Lawn et al.’s [3, 4] quantitative studies found that consumers with BPD reported experiencing high levels of anxiety associated with ‘discrimination due to their BPD diagnosis’ (58%, n = 67) and ‘not being taken seriously’ (71%, n = 82) by health practitioners. Carers/families of people with BPD also reported that they were not taken seriously by practitioners (60.5%, n = 46/77). Carers/families also perceived the discrimination towards the BPD diagnosis (53%, n = 36), and not being taken seriously (44%, n = 30) as major barriers to accessing health services and support. These discriminatory experiences are contrary to best practice guidelines for the treatment and management of BPD [16, 107] which describes the disorder as a valid mental illness with effective treatments available and a legitimate use of healthcare resources. These guidelines also advise against discrimination or withholding treatment based on the presence of a BPD diagnosis.

Reluctance to disclose a BPD diagnosis

Studies examining BPD-related stigma in health systems have highlighted some health practitioners reluctance to disclose a BPD diagnosis to consumers [33, 34, 108, 114, 118, 123]. Sisti and colleague [108] undertook a quantitative survey and found more than half of psychiatrists (57%, n = 77) participating in the study chose not to disclose a BPD diagnosis to their patients; over a third of psychiatrists (37%, n = 49) did not document the diagnosis in their patient’s medical charts. Respondents in this study reported stigma (43%) and uncertainty regarding the diagnosis (60%) as the reasons for withholding a BPD diagnosis from patients. Respondents (n = 12) in Lawn et al.’s [3] survey suggested that family doctors (General Practitioners) did not appear to take notes on BPD or recognize the disorder. Koehne et al.’s [19] qualitative study explored health practitioners diagnostic and disclosure practices for adolescent patients and found that practitioners decisions regarding diagnostic disclosure were often influenced by cultural norms embedded within their professional teams. Findings further indicated that some health practitioners may use discursive strategies to avoid disclosing the diagnosis to their patients such as hedging (i.e., vague terms used to distance from the discussion at hand) and reframing the condition in terms of emerging traits, rather than naming the diagnosis.

Similarly, Sulzer et al. [115] found most health practitioners (81%, n = 32) diagnosed patients with an alternative disorder such as post-traumatic stress disorder or depression. Practitioners' reported reasons for providing patients with an alternative diagnosis included: fear of patient rejecting the diagnosis; protecting patient from stigma, shame, and blame associated with the disorder; and, enhancing patients' likelihood of receiving appropriate treatment for their mental health condition. These findings are consistent with consumer responses reported in this study, which indicated that they had not been informed about the BPD diagnosis by their health practitioner at the time of the diagnosis. Only a few health practitioners (9%) reported fully disclosing a BPD diagnosis to their patients. The reasons these participants gave for disclosing the diagnosis was to ensure that they were complying with their professional duties regarding informed consent for treatment, and to enable consumers to access appropriate treatment for their specific needs.

Contrary to health practitioners beliefs, some consumers with BPD in Sulzer et al.’s [115] study (n = 29) reported that they wanted to be informed of their diagnosis and discuss the disorder and its associated stigma with their health practitioner. Most consumers stated that they experienced relief when they received the diagnosis, and that they found the diagnostic process therapeutic. Few consumers (n = 3) reacted negatively to receiving a BPD diagnosis. These findings are consistent with other studies reporting that consumers with BPD appreciate being informed about the diagnosis by their health practitioner [34, 62]. In addition, Morris et al.’s [111] qualitative study suggested that the way in which people are diagnosed and informed about the diagnosis impacts how they feel about BPD. Consumers who were informed of their BPD diagnosis by a health practitioner that was optimistic about effective treatment and recovery prospects were more likely to feel positive about BPD than consumers who had a negative experience learning about their diagnosis. Further, Sulzer et al. [115] observed that some consumers with BPD whose health practitioner did not openly discuss their diagnosis with them subsequently disengaged with treatment.

Consumers with BPD also reported that receiving BPD-related information and education from their health practitioner was helpful [111, 112] as it assisted them to understand their symptoms and behaviours [65], and to see their condition from a disease perspective rather than as a personality flaw [34]. Other studies highlighted the importance of receiving adequate information about BPD from health practitioners; consumers who did not receive sufficient education showed limited knowledge and understanding of BPD [3, 68]. This experience may be relatively common given the findings of Lawn et al. [3] that 37.8% (n = 45/119) of consumers with BPD reported that they had not received any information from practitioners about what the BPD diagnosis means, and 19.3% (n = 23) of respondents stated that the diagnosis had been explained but they had not understood the information provided. These practices present major structural challenges and barriers to consumers with BPD as they prevent them from having adequate knowledge with which to understand their symptoms, as well as knowledge regarding treatment options to support them with their specific needs [16, 107].

Discourse of untreatability

The dominant biomedical approach to healthcare has been identified as an important structural mechanism driving the challenges and barriers to responsive services and care for BPD. Debates in the literature regarding the effectiveness of biomedical approaches for treating BPD, which rely upon conventional treatments such as medication and short-term intervention rather than longer-term therapy and support, are viewed by many health practitioners as ill-suited [118, 119]. Social factors contributing to stigma and trauma are not considered in the biomedical approach, and have consequently created the unintentional downstream effects of short-term crisis interventions, repetitive crisis presentations, and readmissions to hospital [118]. The inadequacy of the biomedical model to effectively respond to the complex needs of consumers with BPD is evident from their high rates of health service utilization, predominantly primary, emergency, and mental health services [118, 123]. However, health practitioners working with this population experience considerable pressure to align their practice to the dominant biomedical approach [118], despite the challenges associated with treatment, perceptions of poor prognosis, and recovery pathways for BPD [16, 34, 35, 39, 50,51,52,53, 57, 76, 77, 84,85,86, 104, 105, 107, 109, 110, 113, 116, 118, 119, 122].

Sulzer et al.’s [118] qualitative study suggests that some health practitioners avoid working with consumers with BPD based on the misconception that BPD is not treatable as it is not responsive to psychotropic medication. Another qualitative study [84] found that some health practitioners were less likely to provide an objective assessment of consumers' needs when BPD was present, and refused to treat consumers with BPD. Alarmingly, a few health practitioners (n = 2) [110] revealed that they avoided providing any (or minimal) level of care to consumers with BPD. These findings are consistent with reports of health practitioners witnessing their colleagues refusing to treat consumers with BPD [84]. Consistent with this, several studies (n = 9) reported consumers’ with BPD [3, 7, 62, 65, 68, 89, 111, 112, 118] and carers/families of people with BPD [4] being denied treatment by health practitioners when attempting to access health services and support. Consumers with BPD described their experiences of being denied treatment by health practitioners as distressing [16, 106], and that health practitioners’ preconceived ideas and attitudes to BPD left them feeling "labelled and judged" rather than, "diagnosed and treated" for their mental health condition ([112] p.288). Consumers with BPD also stated that although they believed receiving a diagnosis of BPD was useful in guiding treatment at times, the BPD diagnosis affected their treatment and recovery prospects [112]. These findings suggest that the myths concerning the untreatable nature of BPD persists to impact practice (i.e., denying treatment) despite evidence of effective treatments for BPD such as Dialectical Behavioural Therapy, Cognitive Behavioural Therapy, and mentalization based approaches [16, 107, 114].

BPD-related stigma surrounding health and crisis care services

BPD and healthcare

Consumers with BPD and their carers/families frequently access health services in crisis [3, 4, 10, 65] and consequently, experience widespread discrimination, prejudice, and stigma in health systems [1,2,3,4, 7, 8, 10, 16, 19, 33,34,35, 39, 42, 45, 47,48,49,50,51,52,53, 55, 57, 62, 65, 68, 69, 71,72,73, 76, 77, 84,85,86, 88, 89, 104, 106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123]. A recent review described BPD-related crises as a recurrent multidimensional cycle of suicidality, help-seeking, and health service utilization, linked to the experience of distress among consumers with BPD, their carers/families, and health practitioners [35]. The experience of crisis for people with BPD has been described by consumers as a sudden onset of overwhelming emotions in response to negative internal and/or external stimuli such as interpersonal conflict associated with feelings of depression or anxiety. Experiences of intense emotional distress may lead to maladaptive coping strategies (e.g., feeling unsafe, self-harming behaviours, suicidality) and precipitate the involvement of emergency services.

A large-scale quantitative survey [3] undertaken in Australia supported previous evidence [12] that people diagnosed with BPD frequently experience high rates of suicidality. Survey results of the 99 consumer respondents who answered questions relating to suicidality found that 97% (n = 96/99) reported that they have had thoughts about self-harming, 98.9% (n = 94/95) of respondents reported that they had engaged in self-harming behaviours, 100% (n = 99) of participants reported having had thoughts of ending their lives, and 85.6% (n = 83/97) of respondents had made a previous serious attempt at ending their life. Carers/families of people with BPD also experience distress [35], and feelings of intense stress and worry in relation to the wellbeing and safety of the person that they care for when that person is experiencing crises [4, 35, 73]. Carers/families further disclosed that they experience feelings of hopelessness and social isolation when attempting to gain support from family [1] and health practitioners [1, 2, 4, 10].

Health practitioners similarly reported experiencing distress when working with consumers with BPD in crisis [35, 45] where the threat of suicide is considered to be the most distressing presentation [110]. Practitioners disclosed that they find treating consumers with BPD experiencing suicidality confronting [85]. Suicidality has historically been judged harshly by some health practitioners [89] viewing consumers with BPD who engaged in self-harming behaviour as acting out [8] to gain attention [8, 110] or control others [57]. In contrast, consumers with BPD argued that they are misunderstood by health practitioners as their self-harming behaviour is not intended to gain attention or control people; rather, it is a method for releasing or distracting from intense emotional pain [3, 8]. When recounting their impulsive self-harming behaviour, consumers with BPD reported feeling remorse following self-harm or a suicide attempt and then seeking help from health services [58] hoping to recover from the crisis and stabilize their mental health condition [7]. Although health practitioners understood that consumers with BPD engaged in self-harming behaviour in response to emotional distress, they considered these behaviours by consumers with BPD to be a habitual response [85]. The findings in relation to health practitioners responses to BPD and suicidality may contribute to the pervasive stigmatizing attitudes and practices displayed by some health practitioners [1,2,3,4, 7, 8, 10, 16, 19, 33,34,35, 39, 42, 45, 47,48,49,50,51,52,53, 55, 57, 62, 65, 68, 69, 71,72,73, 76, 77, 84,85,86, 88, 89, 104, 106,107,108,109,110,111,112,113,114,115,116,117,118,119,120,121,122,123].

Health practitioners feelings of frustration, inadequacy [84], and uncertainty regarding the treatment and management of consumers with BPD when they present to health services in crisis [45, 76, 77, 110] might be linked to a lack of knowledge, confidence, and skills to deliver high quality care that meet the complex needs of this population [47,48,49,50,51,52,53, 55, 57, 76, 78, 88]. Deans et al.’s [57] quantitative study revealed that one third of nurses who participated in the study (34%) reported that they did not know how to care for consumers with BPD. Respondents in Lawn et al.’s [3] study stated that their family doctor did not appear confident in treating BPD. These findings highlight the need for BPD-specific education, training, and supervision to assist health practitioners to better understand BPD and effectively treat consumers with this disorder [84, 89]. A recent review [124] found promising results regarding the capacity of BPD-specific educational interventions positively modifying health practitioners’ attitudes and practice to BPD. Health practitioners also reported that they wanted to receive education and training in BPD and crisis interventions to help them deliver better services and care to consumers with BPD [124]; practitioners perceived crisis as a consistent feature among consumers with BPD [69, 84, 113], often necessitating crisis intervention and referrals to intensive home treatment teams [35] or other community-based services and supports [3, 4].

Stigma in relation to BPD and suicidality has been identified in the literature as a pivotal structural mechanism underscoring the inadequacy of health and crisis care services and supports for BPD [3, 4, 62]. Studies [84, 121] found that health practitioners themselves reported that consumers with BPD and their carers/families receive inadequate care from health services. Associated challenges and barriers include the significant gaps in the availability, accessibility, and affordability of services and supports for consumers with BPD and their carers/families [3, 4, 8, 33, 35, 42, 65, 72, 73, 84, 85, 106, 109, 111, 112, 117, 120, 123]. Lawn et al.’s [3] studies found that 50% of consumers with BPD reported that they were unable to access support services when they needed them; 63% (n = 48) of carers/families [4] reported that they could not access support services, with 51.4% (n = 37) reporting that their family doctor had not supported them in their caring role.

Primary health care providers reported difficulties navigating health services and referral pathways for clients with BPD and carers/families given the limited services and supports available [42]. Hospital and community-based services and supports for people with BPD and carers/families in the public system is limited, with long waiting times for psychotherapy and other BPD-related programs [3, 4, 42]. Insufficient staff-to-patient ratios and time constraints to meet workload demands are also major barriers to delivering responsive services and care for BPD in emergency and mental health services [84]. In addition, financial barriers relating to the expense of accessing private specialist services often place significant economic demands on consumers with BPD and their carers/families [3, 4, 73]. These gaps in service provision for consumers with BPD place pressure on emergency departments as consumers with BPD and their carers/families perceive there to be few other service options [10, 117]. Consumers with BPD report viewing hospital admissions as a refuge and means by which to keep themselves safe due to the limited availability of community services and supports when experiencing suicidal thoughts and behaviours [71].

Despite ongoing attempts by consumers with BPD and their carers/families to seek help from hospitals for suicidality, there are conflicting views among health practitioners as to whether, or not, hospital admissions are effective for consumers with BPD at risk of suicide [16, 35, 57, 77, 84, 86, 107, 110]. While existing guidelines recommend that consumers with BPD be assessed and admitted to hospital for a short stay (up to 3 days) if they are at immediate risk of suicide [16, 107], approaches to hospital admissions among health practitioners varied considerably. Deans et al. [57] found that 89% of health practitioners reported that consumers should be managed in hospital; contrasting with 14.9% of health practitioners reporting that consumers with BPD should not be admitted to hospital. Other studies found that some health practitioners do not view hospitalization as an effective strategy [86, 110, 121]. For example, in James et al. [121], 64% of respondents reported that they agreed with the statement ‘patients with BPD should not be hospitalized’. Health practitioners decision not to hospitalize consumers with BPD (unless at immediate risk of suicide) may stem from past experiences involving some consumers’ with BPD creating interpersonal conflict on the wards, such as splitting staff or negatively influencing other consumers [110]. Consequently, some consumers with BPD may fall through the service gaps (i.e., experience inconsistencies in the care provided and the recommendations for the delivery of evidence-based healthcare) [72], or disengage from treatment following negative experiences in their attempts to seek help from health services [115].

Other structural challenges and barriers in health systems impacting the provision of health services and crisis care for consumers with BPD include: limited funding allocated for BPD-specific resources such as access to longer term public and private health services [101]; lack of BPD-related health literacy for consumers and carers/families [1, 3, 4, 7, 34, 35, 61, 88]; concerns regarding insurance coverage and financing private therapeutic services [88]; the lack of evidence-based crisis interventions given there are currently no Randomized Control Trials (RCT) assessing the effectiveness of existing crisis interventions [35]; and, problems associated with discharge planning and continuity of care [8, 64, 107]. The structural challenges and barriers specific to carers/families included: lack of knowledge on BPD [35] and the skills to help the person they care for [2]; limited access to BPD-related health literacy, services, and supports to assist carers/families to cope and care for themselves as well as the person with BPD experiencing crises [1, 4, 62, 73, 89]; the lack of consultation with health practitioners regarding the care plans detailing the treatment and management of the person with BPD which limits carers/families ability to effectively care for the person with BPD [10].

Practitioner-consumer interactions

This sub-theme is centred around existing literature exploring the interpersonal dynamics and encounters that can arise during health practitioners, consumers with BPD, and carers/families interactions [3, 4, 7, 48, 49, 51, 65, 72, 85, 104, 109, 116, 119, 122]. Consumers with BPD commonly experience difficulties with interpersonal communication and conflicts which are reflected in their interpersonal relationships and experiences with health practitioners. Practitioners have been described in the literature as having an important mediating influence upon consumers with BPD [35]. For instance, qualitative studies found that interactions with health practitioners either relieved or increased the distress of consumers with BPD and their carers/families [8] with practitioners’ responses being perceived as helpful or discriminatory [72]. Consumers with BPD indicated that they felt socially isolated and rejected when health practitioners were perceived to be unapproachable [65], or abrasive. Indeed, Lawn et al. [3] found that more than half of consumer participants with BPD (53%, n = 60) recalled being treated disrespectfully by health practitioners. Consumers with BPD also indicated that they needed to stand up for themselves when interacting with health practitioners [62].

Similarly, carers/families of consumers with BPD reported being treated disrespectfully [4] or made to feel as though they were to blame, or responsible for, the presentation of the person with BPD [35]. Carers/families also recalled experiencing stigma by association (i.e., stigma extended to family members based on their relationship with the person that they care for) when they engaged with some practitioners. These interpersonal conflicts may retraumatize consumers with BPD and their carers/families and catalyse a crisis [35, 115]. Despite these negative encounters, consumers with BPD reported that they valued their connection with health practitioners, and wanted to have positive working relationships with practitioners [115].

Extant literature suggests that health practitioners believe consumers with BPD are typically difficult to engage and interact with [114]. Psychiatric nurses perceived consumers with BPD as resistant to treatment, which made it stressful for the nurses to connect with these consumers and build rapport [86]. James et al. [121] found 75% of health practitioners considered consumers with BPD were moderately or very difficult; and 80% of participants believed that consumers with BPD were more difficult to engage than other consumers. Health practitioners also reported experiencing strong emotional reactions including, feeling uncomfortable, powerless, and professionally challenged when interacting with these consumers [84].Primary health practitioners [42] and allied health staff [113] also reported being concerned about their ability to effectively manage countertransference and practitioner-patient boundaries when working with consumers diagnosed with BPD. These negative reactions and encounters can create major barriers [86] to the development of effective communication and practitioner-patient relationships [33, 49], as well as with carers/families. Similar to consumers, health practitioners also reported that they wanted to improve their relationships with consumers with BPD and carers/families [76]. Figure 2 presents the various macro- and micro-level structural mechanisms, challenges, and barriers impacting the provision of healthcare for BPD. Additional file 3 outlines the structural factors influencing BPD-related structural stigma in healthcare systems across the relevant populations (i.e., health practitioners, consumers with BPD, and carers/families).

Fig. 2

Macro- and micro level structural mechanisms, and barriers impacting healthcare for health practitioners, consumers with BPD, and carers/families

Discussion

This scoping review systematically mapped and synthesized a narrative summary of international literature examining the impact of structural stigma on the provision of healthcare for people with BPD and their carers/families. The results presented here confirm that BPD remains a highly stigmatized and controversial mental illness that engenders inconsistent and often inadequate responses in health systems [1,2,3,4, 34, 35, 49, 52, 65, 68, 73]. Consumers with BPD and their carers/families face many sources of adversities when seeking help from health services [1,2,3,4, 10, 65, 73]. These adversities stem from several macro- and micro-level factors that contribute to the shortcomings in health services and care for BPD [34, 35, 42, 47, 90, 108, 114, 115, 118, 125]. The prominent structural mechanisms, challenges, and barriers impacting the delivery of responsive health services and care for BPD comprised: discrimination and stigma towards consumers with BPD and their carers/families [19, 34, 35, 49, 72, 106, 122, 126]; the inadequacy of the biomedical model of care in meeting the complex needs of BPD [114, 118]; the DSM grouping for BPD [12, 118]; and, the limited BPD-related resources including support services and education [3, 4]. These structural considerations have had a profound impact on the capacity of health systems to deliver responsive services and care to this population.

Several key themes and sub-themes emerged from the data highlighting the immense effects of structural stigma on consumers with BPD and their carers/families who endeavour to access health services and supports. Commonly held myths concerning the legitimacy of the BPD diagnosis, its disclosure to consumers, and the discourse of untreatability are interlinked, and combine to perpetuate the stigmatizing culture, attitudes, and practices evident within many health systems [3, 4, 35, 72, 106, 114, 118, 120]. Debates continue to question the validity of BPD as a mental health disorder—sometimes framing its symptomatology as an immoral discourse (e.g., acts of self-harming behaviour are an attempt to gain attention), rather than a diagnosis positioned within a illness discourse [35, 114]. This implies that consumers with BPD are not truly ill or deserving of healthcare and thus justify the refusal of treatment. Contrastingly, the evidence that health practitioners used to categorize consumers as not being ill (such as presenting with suicidal behaviour) could also be used to justify these consumers’ legitimate illness and need for treatment [114]. Chronic suicidality among consumers with BPD could instead be interpreted as a cry for help and a signal that these consumers are not receiving effective treatment to assist their recovery, despite their ongoing attempts to seek help [112]. The notion that receiving healthcare is contingent on particular definitions associated with being unwell [114] violates peoples’ most fundamental right to access healthcare [16]. These findings suggest a need to recognize and respond to the serious nature of crisis presentations in health systems given consumers with BPD are a patient group at high-risk of suicide [28, 114].

The extent of the structural stigma associated with BPD has had a substantial influence on health practitioners’ diagnostic and disclosure practices [19, 114]. The complexity of BPD [12, 19], and the associated structural problems (i.e., lack of available treatment options, stigmatizing culture and practices, inadequate training of health professionals) have resulted in some health practitioners withholding a BPD diagnosis from their patients [19, 108, 114]; perceiving that giving this diagnosis would do more harm than good [115]. In contrast, this assumption has been refuted by other health practitioners [19, 123] and consumers with BPD who reported that receiving a diagnosis of BPD gave them relief and was a positive step towards understanding BPD, its associated symptoms, and accessing appropriate treatment [115].

Findings relating to health practitioners’ pervasive stigmatizing attitudes and practices to BPD underscore the structural problems that are woven into the cultural fabric of health systems [34]. Studies indicate that some health practitioners may hold prejudice towards BPD, limiting their ability to explore and understand the underlying causes of self-harming behaviour among consumers with BPD [123]. For consumers with BPD, their experiences of repeated crises are complex and multidimensional, and may compound their level of distress, as well as the distress experienced by their carers/families and health practitioners [45]. Evidence suggests that health practitioners also find these experiences challenging, and may feel powerless in the context of self-harm, and overwhelmed by the chaotic and conflictual interactions partly due to the lack of knowledge, strategies, and skills to manage crisis situations [34]. It is likely that health practitioners’ stigmatizing attitudes and externalizing practices of blame and refusal of care, arise from being overwhelmed and uncertain about how to manage the situation [34]. Sansone and Sansone [90] argued that health practitioners’ negative reactions to consumers with BPD may simply reflect a normal human response to the complexity and pathological nature of these consumers. The extent to which the stigma of BPD is largely situated within health systems is an indication that the problems and solutions lie in the culture and delivery of health services and care, and not the BPD diagnosis [60], and requires concerted effort to address the impact of structural stigma on healthcare for this population [92]. These findings highlight the importance of investing in BPD-related education, training, and supervision to assist health practitioners to better support consumers with BPD and their carers/families when they engage with health services during crises [45, 54, 77, 89, 106, 109, 110].

This review has implications for health service design and the delivery of responsive treatment and crisis interventions to better support consumers with BPD and their carers/families. The literature identifies several recommendations for addressing BPD-related structural stigma and improving health service delivery including the utilization of whole-of-system approaches to addressing structural stigma at both the macro- and micro-levels of healthcare institutions [34, 42, 47, 48, 52, 110, 113, 116]. This involves implementing coordinated and targeted approaches that address the structural factors associated with BPD-related stigma in health systems including: the cultural norms, policies, and practices [16, 47, 107]; implementing psychosocial models of care for BPD [60] underpinned by person-centred and compassionate approaches [35, 77]; and, increasing funding for BPD-related resources [41] which include professional development for staff.

Clear recommendations have detailed the need for health services to not only treat the physical ailments associated with self-harm, but also, the underlying emotional distress that is associated with self-harm and suicidality among consumers with BPD [60]. These recommendations require holistic approaches to care delivery including increased access to longer-term specialized therapeutic services [42, 49]. In addition, the absence of RCT confirming the effectiveness of existing crisis interventions for BPD [79] makes clinical decisions regarding evidence-based treatment and management of BPD challenging. This warrants urgent instigation of high-quality research to investigate the efficacy of crisis interventions for BPD [35]. At a system level, structural stigma concerning BPD in healthcare systems must be addressed. Research investigating the various multi-levels and multifaceted components of BPD-related stigma is needed to explicate how changes in each of these structural factors interact and operate (either separately or together) to impact the health and wellbeing of this population. This may include testing the specific effects of the structural mechanisms identified in this review in relation to their impact on health service access, service delivery, and health outcomes of people with BPD and their carers/families [80].

Limitations

There are several limitations to this review. Studies included in this review may have an inherent bias in terms of their research question (e.g., attracting participants who have had bad experiences with the health system). It is important to acknowledge that despite the structural barriers and associated stigma discussed in this review, these findings may not apply across all health systems, particularly health and community-based services providing high quality BPD-related services and care to community. Another limitation involved BPD being the primary diagnosis explored within the context of structural stigma and its impact on healthcare therefore, data pertaining to experiences of structural stigma relating to other mental health disorders (including personality disorders) were not captured. Also, publications were limited to English only, and some relevant publications may have been missed due to the exclusion of full-text publications that were unable to be accessed free of charge, or older publications that may not have been available for download. Furthermore, there is a lack of high-quality RCT which restricted the findings of this review such that inference of causality regarding the health impacts of structural stigma [79] could not be applied, nor generalized to the broader population [9]. This includes the lack of effectiveness studies available to support the use of evidence-based crisis interventions for BPD [79].

Conclusion

Consumers with BPD and their carers/families often experience recurring crises and frequently seek help from healthcare services. Structural stigma specific to BPD remains pervasive in health systems, reflected by many macro- and micro-level factors that are embedded in institutional policies, cultural norms, and practices. Key structural mechanisms impacting the delivery of adequate services for BPD were identified in the literature. These included BPD-related stigma and discrimination, and the dominance of the biomedically-driven approaches to healthcare. Implications for future practice and research were discussed, along with recommendations for addressing BPD-related stigma in healthcare systems including the need for holistic system-wide changes to service delivery that are underpinned by psychosocial and person-centred approaches.