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. Author manuscript; available in PMC: 2018 Feb 1.
Published in final edited form as: Psychiatr Serv. 2016 Oct 3;68(2):167–172. doi: 10.1176/appi.ps.201600108

Qualitative Analysis of Resources and Barriers for Borderline Personality Disorder in the U.S.

Matthew C Lohman 1, Karen L Whiteman 2, Frank E Yeomans 3, Sheila A Cherico 4, Winifred R Christ 5
PMCID: PMC5288272  NIHMSID: NIHMS795699  PMID: 27691382

Abstract

Objective

Resources and treatment for individuals with borderline personality disorder (BPD) are limited and often difficult to obtain. Experiences and preferences of individuals seeking care are seldom examined but important elements in determining challenges to obtaining appropriate care. This article aimed to identify key resources for and barriers to obtaining supportive and treatment services for BPD, from the perspective of individuals seeking care.

Methods

Data came from transcripts of resource requests made to the Borderline Personality Disorder Resource Center from January 2008 to December 2015 (N=6,253). Basic statistics regarding requested BPD service types, demographic information, and national distribution of requests were generated for all eligible transcripts. Qualitative analysis was used to identify themes, challenges, and common experiences reported among a random subset of those seeking services (N=500).

Results

Primary services or resources requested were outpatient services (51%), informational materials (13%), and daycare programs (9%). Care-seekers identified family services, crisis intervention, and mental health literacy as areas where available resources did not meet current demand and which could be improved and/or expanded. Factors identified as potential barriers to finding and obtaining appropriate treatment for BPD included stigmatization and marginalization within mental healthcare systems, financial concerns, and comorbidity with psychiatric or medical disorders.

Conclusions

Individuals seeking supportive services and treatment for BPD face numerous barriers to obtaining appropriate care. Expanded services and resources to connect individuals with treatment are needed to meet the current demands and preferences of those seeking care.

Introduction

Borderline personality disorder (BPD) is among the most frequently encountered but under-treated conditions in clinical mental health settings (1–3). BPD may have a profoundly negative impact on the psychosocial and occupational functioning of those afflicted (2, 4) and may severely burden family members and health systems (5, 6). Despite the substantial public health impact, empirically-supported therapies for BPD are not widely available in publicly-funded treatment settings, and recovery is unlikely with mental health services typically focused on short-term intervention or case-management (7). Thus, the experiences of those seeking care, although important to identifying service needs, are often unrecognized, and standard services may not reflect the preferences of care-seekers (7, 8). Understanding the experiences of those seeking care is important for developing targeted services and connecting consumers with appropriate resources (1).

Prior studies have examined service needs and barriers to obtaining appropriate BPD services; however, few have qualitatively examined needs from the perspective of those seeking care. For instance, Strike and colleagues explored the circumstances of health service use among suicidal men with BPD and found that prior negative experiences with healthcare providers frequently contributed to avoidance of healthcare settings and “fragmented pathways” to care (9). Other research has examined perceived lack of supportive services for caregivers and family members (6). Dunne and Rogers (2013) interviewed caregivers for those with BPD and found both dissatisfaction with their involvement in care planning and uncertainty about what supportive services were available (6).

Although these findings highlight the difficulties of obtaining appropriate care and services for BPD, understanding of the resource landscape for BPD is incomplete. Few studies, for instance, have evaluated the circumstances or preferences of BPD care-seekers on a national scale or have incorporated perspectives from consumers, caregivers, and family members. Such knowledge is important for describing service limitations and for allowing a marginalized population to articulate issues and concerns. Using qualitative analysis of data from a national sample of care-seekers, we aimed to build on the BPD services knowledgebase by characterizing the experiences of consumers, caregivers, and family members seeking BPD resources.

Methods

Sample

Data were obtained by study investigators retrospectively from the New York Presbyterian Hospital, Borderline Personality Disorder Resource Center (BPDRC), an online center created to connect those affected by BPD with treatment and support (10). Established in 2008, the BPDRC disseminates educational materials and connects individuals to region-specific resources such as treatment centers, physicians, and supportive services. The BPDRC website provides general BPD information, while individuals seeking referrals, specific information, or other resources may contact the BPDRC staff through email or phone. During service requests to the BPDRC, licensed clinical social workers conduct brief unstructured interviews regarding service needs and experiences, and record interview content in narratives. Resources and referrals are provided based on individual callers’ needs and preferences.

Participants were eligible if they contacted the BPDRC with service requests between January 2008 and December 2015 by telephone or email. We excluded participant transcripts from analysis if they identified themselves as a minor (age < 18 years), if they were non-English speaking, or if participants were referred to services outside of the United States. This study was approved by the Weill Cornell Medical College Institutional Review Board.

Analysis

Descriptive statistics were generated describing frequency of requested service types, the distribution of requests by state, and relationship to BPD patient. When available, requests were categorized by demographic information such as age, gender, and race; however, demographic information was not systematically collected.

To assess the themes identified within caller records, we conducted a conventional qualitative content analysis (11) among a randomly-selected subset of 500 transcripts, including calls spanning the duration of the request database (2008 to 2015). Analysis and coding were conducted in stages, guided by principals of grounded theory (12). First, study investigators reviewed the selected transcripts, performed exploratory analyses, and independently identified major themes. Second, a review of literature concerning health service utilization and treatment for BPD was conducted and considered in reference to preliminary themes. Third, study investigators developed analytic codes which were applied to transcripts and iteratively adjusted based on the data and service literature. Similar concepts and codes were diagrammed, consolidated, and grouped around central themes. Call record excerpts were selected to illustrate overarching concepts. Coding, analyses, and literature review were performed using NVivo qualitative analysis software (13).

Results

The BPDRC request database contained 6,253 eligible transcripts (approximately 800 per year), distributed across all U.S. states (Figure 1). Most inquiries (49%, n=3,039) were made by family or friends of those with BPD, while 40% (n= 2,514) were made by individuals with BPD. Approximately 9% (n=563) of contacts were made by health professionals seeking referrals for individuals with BPD or seeking information regarding BPD symptoms. Approximately 10% of calls concerned services for adolescents.

Figure 1.

Figure 1

Open in a new tab

National distribution of calls to the Borderline Personality Disorder Resource Center (January 2008 to December 2015).

Requested Services

Among randomly selected call records, the most frequently requested and recommended services were outpatient or intensive outpatient care (Table 1). Dialectical behavioral therapy (DBT) resources were requested by the majority (67%) of callers seeking outpatient services for BPD, followed by requests for general cognitive behavioral therapy (CBT), and transference-focused therapy (TFP). Few callers requested pharmacotherapy or referrals for prescribing physicians. Only two callers requested referrals to psychiatrists who could prescribe medications for BPD.

Table 1.

Requested Services among BPDRC callers (N=500)

Contact N %
Family member or friend 271 54%
Individual with BPD 191 38%
Health professional 38 8%
Service Typea N %
Outpatient/Intensive outpatient 256 51%
Informational material request 66 13%
Day programs 46 9%
Family services 45 9%
Residential 43 9%
Inpatient 37 7%
Support groups 33 7%
Comprehensive evaluation 22 4%
Crisis/Emergency 17 3%
Interfaith/Other 10 2%
Research study referral 4 1%
Open in a new tab
a

Service types are not mutually exclusive by caller

Mental Health Literacy and Marginalization

Two notable and related themes to emerge were poor mental health literacy with respect to BPD and marginalization/stigmatization of individuals with BPD. Following requests for outpatient referrals, informational materials were the most frequently requested resources. Several callers requested basic epidemiologic statistics regarding BPD prevalence. Similarly, both patients and providers requested resources to learn about the symptoms and features of BPD, to identify BPD, and to distinguish BPD from other mental health disorders. For example, one caller wanted information about accommodating an employee with BPD, stating that “she has an employee with BPD [symptoms] who is very difficult. She wanted articles on how to prevent divisiveness when such an individual is on staff.”

Many callers reported apprehension about receiving a BPD diagnosis due to potentially negative attitudes of others. For example, one caller reported that “she fears she has symptoms of BPD and depression but has avoided seeking diagnosis… She is concerned about anyone knowing that she has BPD due to stigma.” To some, the issue of stigmatization was reflected in the orientation of mental health providers toward BPD, as one caller reported, “she is doing research on stigma concerning BPD among mental health professionals. She has been diagnosed with BPD… and was turned away by many clinicians.” Others noted the isolation created by stigmatizing attitudes: “she has had BPD her entire life and said that the stigma has kept her isolated and ostracized. Her local hospital has asked her not to return.”

Family and Caregiver Resources

A majority of contacts to the BPDRC were made by family members on behalf of individuals with BPD. The primary service needs identified by family members were supportive services and resources to facilitate conversation with someone who might have BPD. In particular, transcripts reflected a desire for increased communication and for more integration of family members into care plans. For instance, one transcript noted, “a family of a [son with BPD] in his early 20’s asked [for] help in learning how to communicate and interact with their son. He is seeing a therapist, but the parents feel they lack skills needed to positively impact/assist their son.”

Family members frequently requested supportive resources to help them cope with or understand BPD. Family Connections, a 12-week course that provides education, skills training, and support for people in a relationship with someone who has BPD (14), was the most commonly referenced resource for those seeking family-oriented services. Other frequently requested family-based resources included Treatment and Research Advocacy for Borderline Personality Disorder (TARA) (15) and the National Education Alliance Borderline Personality Disorder (NEABPD) (16).

Insurance and Finances

One theme closely tied to requests for family services was concern about insurance coverage and finances. Approximately 12% (n=60) of callers reported concerns about treatment costs or affording their level of desired care. Financial concerns were especially prevalent among those seeking inpatient services and seeking services for family members. For example, one caller stated, “her 16 year old son has BPD and she cannot afford $20,000/month for residential treatment. She wanted to find less costly alternatives that would provide structured, intensive treatment.” A secondary and related theme concerned a divide between desired care and what is covered by public insurance. For example, one caller reported “her 17 year old daughter is on Medicaid, was diagnosed with BPD at age 14, and has been hospitalized repeatedly for parasuicidal behavior. [She] cannot afford private pay.”

Medical and Psychiatric Comorbidity

Caller records reflected the difficulties individuals with BPD have coping with comorbid psychiatric and medical disorders and their desire to find services to accommodate more complex pathologies. Among individuals with BPD, 10% of callers reported substance abuse problems or an additional psychiatric diagnosis. Typical examples highlighted the negative impact of BPD on coping and interference with treatment for comorbid psychiatric disorders: “[Caller] has a 19 year old son in a drug rehab in Florida who will be [discharged] shortly. He has BPD, bipolar disorder and substance abuse. They want a longer term residential center that can handle all of these.” Another example illustrated how medical conditions may complicate treatment: “[The caller’s] niece has BPD and severe substance abuse plus diabetes and asthma. [She] has overdosed many times and had inpatient rehab plus two detox stays with no effect.”

Crisis Services

A final theme to emerge was need for acute mental health services for patients and families in crisis. Requests included services for families undergoing stress due to an individual with BPD, services for individuals demonstrating suicidal behaviors, or resources for individuals experiencing general distress. For example, one caller reported that, “her daughter, 17, fits criteria for BPD and that she is non-compliant and will not go to treatment. She has fits of rage, cuts herself, and police have been called a few times to take her to the ER.” Likewise, the impact of crisis periods on families was reflected by a caller who stated that, “[he] has a 41 year old daughter with BPD whom he has supported for 3 years. [Insurance] is not helping and family is falling apart due to stress.”

Discussion

The BPDRC database provided a wide-ranging account of resource preferences, barriers to care, and general experiences of those seeking care for BPD in the U.S. Primary themes included types of requested services, mental health literacy and marginalization, family resources, financial concerns, comorbidity, and crisis services. Overall, these findings underscore challenges of obtaining appropriate care for BPD and opportunities for improving the coverage and scope of current resources.

Requested Services

The predominance of psychotherapy in resource requests is consistent with current research and practice guidelines regarding therapy for BPD (17–19). Indeed, DBT the most requested form of psychotherapy is among the most widely validated therapeutic methods for treatment of BPD (2, 20) and is effective at achieving remission of some troubling features of BPD such as self-injury, suicidality, and hospital use (2, 21). Other forms of psychotherapy, such as TFP, mentalization-based therapy (MBT), and schema-focused therapy have also been shown to be effective at treating BPD compared to non-psychotherapeutic treatments (22, 23).

In contrast, few callers requested resources or referrals for medications, a result which is consistent with current knowledge regarding pharmacotherapy for BPD (24). While research suggests that anti-depressant and anti-psychotic medications may be used successfully to treat certain aspects of BPD, there is limited evidence with which to make conclusions regarding overall efficacy (24). The infrequency of requests for pharmacological resources suggests at least general awareness of current practices among callers.

Information and Mental Health Literacy

The predominance of requests for informational materials highlights a lack of knowledge about BPD among both consumers and providers. Mental health literacy, referring to “knowledge and beliefs about mental disorders which aid their recognition, management or prevention” (25), is an especially important goal, as BPD is among the most under-recognized mental disorders (26, 27). Inadequate knowledge regarding BPD may lead to inappropriate treatment-seeking, poor implementation of treatment plans, and misallocation of mental health resources (7, 26, 28). These outcomes often result in diminished patient confidence in service providers and reduced likelihood of seeking treatment (9).

Lack of knowledge about BPD also creates barriers to appropriate treatment by contributing to marginalization and stigmatization of the disorder (1, 7, 8). Among health professionals, knowledge about BPD informs attitudes and beliefs about the causes of the disorder, influencing rates of diagnosis and recommended therapies (1, 26). Yet, BPD is still seen by many as an “untreatable disorder” (7, 29), leading providers to avoid the diagnosis of BPD altogether (30). Ensuing poor treatment responses reinforce providers’ negative perceptions of BPD, further limiting understanding of the disorder (7, 29). Given reports of negative experiences by callers, efforts to increase mental health literacy are warranted to reduce stigmatization of BPD and reduce inappropriate treatment seeking. Moreover, training of providers in the recognition of personality disorders and need for long-term supportive services may likewise help reduce unnecessary service utilization.

Family and Caregiver Resources

While treatment programs and research acknowledge the important role of family caregivers in the treatment and management of BPD, supportive services for caregivers are rarely available (31). BPDRC callers frequently expressed unfamiliarity with both the disorder and available family resources. Likewise, consistent with prior studies (6, 31), family members reported dissatisfaction with their involvement in treatment and communication with providers. Further clinical and systematic efforts are needed to improve family member understanding of BPD, to build awareness of available supportive services, and to encourage integration of families into therapy. As an initial step, connecting family caregivers with existing available resources is especially important, since caregivers for those with BPD may experience significant self-neglect and strain on their personal health and well-being (6).

Insurance and Finances

As reported by callers, individuals with BPD frequently accrue high healthcare costs, in part due to difficulties in locating appropriate services, inaccessibility, and poor insurance coverage (1, 5). Management of BPD, frequently requires long-term treatment and support, yet many healthcare insurers are reluctant to reimburse for long-term therapeutic sessions (32). Insurance coverage is often more favorable towards treatment of conditions such as major depressive disorder and bipolar disorder, which are viewed as more urgently debilitating and treatable within a limited timeframe (1, 32). Given these difficulties, therapists have considerable incentive to bill for short-term treatment (32).

Additionally, compared to other mental health disorders, BPD research has received far less funding from the National Institutes of Health (1). The lack of research imperative likely contributes to the lack of services and coverage for BPD treatment. Unreliable findings regarding treatment efficacy and prognosis may in turn be seen as justification for limited reimbursement for long-term BPD services (32). As reflected in caller transcripts, one potential consequence is less coverage for more intensive treatment, residential care, and services for those most in need.

Medical and Psychiatric Comorbidity

Medical and psychiatric comorbidities were among the most commonly referenced concerns. Research suggests that BPD is frequently associated with concomitant mood and anxiety disorders, substance abuse, self-injury, suicidal behaviors, and medical illnesses (2, 33–35). Psychiatric comorbidity is an especially important consideration in relation to treatment outcomes. A number of independent large-scale longitudinal studies show that comorbid personality disorders, particularly BPD, not only affect treatment outcomes of major depressive disorder adversely (36, 37) but also lead to lower rates of remission and increased relapse rates (38–40). Additionally, the negative effects of BPD on treatment for depression seem to be unidirectional (39–42). For instance, Gunderson et al. (2004) found that improvements in major depressive disorder were not followed by improvements in BPD, whereas improvements in BPD were often followed by improvements in major depressive disorder (39). Similar findings were reported with regard to the relationship between BPD and bipolar disorder (43) and anxiety disorders (44). These findings underscore the importance of comprehensive approaches to address BPD along with comorbid disorders.

Crisis Intervention

The consequences of not caring for individuals in crisis is potentially costly to healthcare systems and potentially lethal to patients. As BPD is characterized by emotional and interpersonal instability, individuals with BPD often experience crises where it is difficult to cope with anxiety, depression, and psychotic symptoms (45, 46). During crisis periods, individuals with BPD are at particularly elevated risk for self-injury and suicide (47), necessitating acute mental health services (45, 46); however, there are few interventions that specifically address acute crisis periods. A review by Borschmann and colleagues (2012) found only two ongoing randomized crisis intervention trials for individuals with BPD (45); the authors concluded that there was insufficient evidence to assess efficacy of crisis intervention for those with BPD (45). As revealed by callers, there is significant demand for effective crisis interventions that may be inadequately addressed by current resources.

While this study provides important perspectives from care-seekers, it also has limitations. First, despite being nationally based, the BPDRC caller database is a convenience sample lacking systematic collection of demographic information and therefore may not be representative of more general views or experiences. Future studies with more rigorous sampling methods and focus on specific demographic groups may provide a more thorough understanding of current issues and trends in BPD services. Similarly, caller transcripts were based on unstructured interviews which may not reveal all salient themes. Future research should explore in more detail the themes represented in this study and the factors and services related to successful management of BPD.

Conclusions

This study provides a broad overview of the experiences and preferences of BPD care-seekers and highlights important focal areas for improving BPD services. Consistent with prior studies, care-seekers identified family services, crisis intervention, and mental health literacy as areas where available resources could be improved or expanded. Similarly, care-seekers identified stigmatization, financial concerns, and comorbid disorders as potential barriers to finding and obtaining appropriate services and treatment. These insights offer targets for future efforts to improve BPD services and outcomes.

Acknowledgments

Research reported in this study was supported by a grant from the National Institute of Mental Health (T32 MH073553 11).

Footnotes

Disclosures

Dr. L has no potential conflicts of interest or financial interests to report. Dr. W. has no potential conflicts of interest or financial interests to report. Dr. Y. has no potential conflicts of interest or financial interests to report. Ms. C. has no potential conflicts of interest or financial interests to report. Dr. C. has no potential conflicts of interest or financial interests to report.

Contributor Information

Matthew C. Lohman, Dartmouth Centers for Health and Aging, 46 Centerra Pkwy, Lebanon, New Hampshire 03766

Karen L. Whiteman, Dartmouth Centers for Health and Aging, 46 Centerra Pkwy., Lebanon, New Hampshire 03766

Frank E. Yeomans, Weill Medical College of Cornell University - Psychiatry, New York, New York

Sheila A. Cherico, Borderline Personality Disorder Resource Center - New York Presbyterian Hospital, White Plains, New York

Winifred R. Christ, Westchester Psychiatric Group, Tarrytown, New York

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