Course:SOWK551/2021/Improving Healthcare Experiences for People with Personality Disorders
Literature review on best practices for health care workers in improving the experiences of people with personality disorders in healthcare settings.
Among healthcare workers, people with personality disorders are considered to be some of the most dreaded, difficult patients to care for (Terpstra, & Williamson 2019). This literature review seeks to synthesize information to build an understanding of how healthcare workers, and more specifically social workers, can improve the experiences of people with personality disorders in healthcare settings. Search terms included "cluster B," "personality disorder," "hospital," "health," “social work,” and “(GeographicLocations:(canada)).” Although Canadian research within the past 5 years was prioritized, a broader net was cast because research was scant. The lack of research may be due to poor advocacy for personality disorders (Wanniarachige, 2015). Cailhol et al. (2021) point out that there are five times as many published articles for schizophrenia as compared to borderline personality disorder (BPD) despite a higher prevalence of BPD. The literature included qualitative interview studies (Acres et al., 2022; Friesen et al., 2022; Jones & Wright, 2017; Papathanasiou & Stylianidis, 2022), quantitative descriptive studies (Cailhol et al., 2017; Cailhol et al., 2021), and reviews of existing research (Antai-Otong, 2016; Ricke et al., 2012; Terpstra & Williamson, 2019).
This paper will start with a description of personality disorder characteristics and the resulting implications for healthcare. Then, explorative studies about stakeholder experiences will be reviewed to help illustrate challenges within healthcare. A summary of articles’ recommendations for practice will be provided, followed by a critical analysis of existing gaps. For the purpose of this paper, the term “personality disorder” or “PD” will be used as a catchall to refer to people with “Cluster B” personality disorders, including borderline personality disorder (BPD).
Personality Disorder Characteristics
There are ten personality disorders defined by the DSM-5-TR, which are grouped into Clusters A, B, and C (American Psychological Association, 2022). This paper will primarily focus on “Cluster B” personality disorders (including borderline personality disorder (BDP)). However, the DSM-5-TR clarifies that people don’t often fit neatly into one cluster and may have co-occurring symptoms of multiple clusters (e.g. fear and anxiety from Cluster C). According to the DSM-5-TR, people with Cluster B PDs often appear dramatic, emotional, or erratic. They typically experience “frantic efforts to avoid real or imagined abandonment;” “impulsivity…that [is] potentially self-damaging;” “recurrent suicidal behavior;” and “inappropriate, intense anger,” among other symptoms (Table F60.3).
Much of the literature applies Bowlby’s attachment theory to explain PDs as there is a strong body of evidence to support the relationship between attachment and BPD (Scott et al., 2009). The theory suggests that inconsistent, abusive, or emotionally unavailable caregivers in childhood result in the development of insecure attachment styles which lead to maladaptive behaviors in people with PDs (Scott et al., 2009). For example, this may explain the intense fear of abandonment. However, Davis et al. (2018) cautions that the use of single theory is too simplistic to explain the complexity of personality disorders. Therefore, it’s interesting that attachment theory is so relied-upon in the literature; it could be that authors perpetuate previous discourse rather than considering other relevant theories. Livesley and Larstone (2018) provide a much more complex exploration of theories associated with PDs including genetic and neurological influences (Chapters 13-19).
Implications for Healthcare: Problem Identification
People with PDs are heavy users of healthcare services, have reduced life expectancies, high rates of medical comorbidities, and high rates of suicide. The lifetime prevalence of personality disorders is 6-9% within the general adult population in Canada (Public Health Agency of Canada, 2002). Additionally, people with BPD are represented in 9% to 33% of all suicides (Ricke et al., 2012). Cailhol, Pelletier, Rochette, and co-authors have conducted several studies on the topic. They found a lost life expectancy of 13 years for men and 9 years for women with Cluster B PDs (2017). In a later study, Cailhol et al. (2021) found that people with Cluster B PDs had higher rates of cardiovascular diseases and cancer as compared to the general population. Cailhol et al. note that their findings align with a large body of existing research on the topic.
The literature identifies many challenges PDs pose for healthcare workers. For example, people with PDs may complain of physical pain because they struggle to articulate emotional suffering (Terpstra & Williamson, 2019). They can be help-rejecting and often “undermine themselves at the moment a goal is about to be realized” (American Psychological Association, 2022). Ricke et al. (2012) explain this behaviour may be due to the clients’ fear of losing relationships with healthcare workers upon recovery. Additionally, People with BPD may use a defense mechanism called “splitting,” whereby they label others as either good or bad; they may idolize a healthcare provider to build closeness, then may quickly vilify the worker if they anticipate rejection (Terpstra, & Williamson 2019). Healthcare workers become frustrated when people with PDs seemingly manipulate them using triangulation, or playing healthcare workers off each other (Ricke et al., 2012).
Among the qualitative studies with stakeholders (clients with PDs, their family/carers, and healthcare workers), common themes were shared: stigma and discrimination, barriers to accessing services and disillusionment, and inclusion of family/carers (Acres et al., 2022; Friesen et al., 2022; Jones & Wright, 2017; Papathanasiou & Stylianidis, 2022). Despite the plethora negative experiences discussed, carers expressed understanding and compassion for healthcare workers (Acres et al., 2022), healthcare workers spoke about finding meaning and enjoyment working with people with PDs (Friesen et al., 2022), and Clients recalled some positive experiences with supportive and understanding healthcare workers (Friesen et al., 2002).
Stigma and Discrimination
Within the healthcare system, experiences of stigma and discrimination were commonly discussed by healthcare workers, clients with PDs (Friesen et al., 2022), and their carers (i.e. family) (Acres et al., 2022). Carers expressed frustration at a “lack of care, compassion, communication, and empathy” from ED nurses and stated that nurses repeatedly invalidated and minimized the families’ crises (Acres et al., 2022, p. 1795). It seems that lack of confidence in one’s skills is a significant factor leading to healthcare workers wanting to avoid or disengage from working with people with PDs (Jones & Wright, 2017). Stakeholders noted that a lack of knowledge of BPD among healthcare workers contributed to harmful treatment; clients shared that they felt like healthcare workers didn’t understand how a BPD person’s brain works, which led to feeling isolated and alone (Friesen et al., 2022). From the healthcare workers’ perspective, interviews with nurses uncovered feelings of futility, uncertainty, frustration, and unsupportiveness (Papathanasiou and Stylianidis, 2022). On a more promising note, mental health nursing students expressed the importance of de-stigmatizing patients and working with person-centered approach (Jones & Wright, 2017). Perhaps this provides evidence that additional psychoeducation produces more compassionate care.
Barriers to Accessing Services and Disillusionment
In interviews, stakeholders expressed disillusionment when they sought help but were offered minimal options for services or treatment (Acres et al., 2022; Friesen et al., 2022). Healthcare workers seemed to consider suicide and self-harm gestures to be a behavior issue rather than a legitimate risk; paradoxically, some nurses communicated to family that there was no hope for their loved one and suicide was inevitable (Acres et al., 2002). Similar sentiments were echoed in Friesen et al.’s (2022) study: clients and carers stated that they faced disappointment and felt abandoned by the system when they were sent home from hospital without help. Friesen et al.’s (2022) participants explained that even if services were available, clients with BDP were seen as too complex or difficult to be accepted for treatment.
Inclusion of Family/Carers
Carers expressed frustration that they were often excluded from communication and decision-making, even when it was apparent the client approved of their carer’s involvement (Acres et al., 2022). While they understood the value of patient confidentiality, carers noted that the strict confidentiality was harmful because they were prevented from learning how they might support their loved one.
Application to Practice
The literature demonstrates an abundance of best-practice wisdom for working with people with PDs. Review articles, which summarize existing knowledge, provide some of the most insightful and practical recommendations (Antai-Otong, 2016; Ricke et al., 2012; Terpstra & Williamson, 2019). There is strong consensus in the literature with regards to best practices for working with people with PDs; common themes include: Training and education for healthcare workers; providing care that is empathetic, respectful, and patient; inclusion of clients’ family/careers; and greater support for healthcare workers. Although these recommendations were written specifically for personality disorders, they would be beneficial for any client, especially if the client is engaging in challenging behaviours. The information below provides only a brief glimpse of the available practice guidance; additional reading is strongly encouraged for anyone who works with people with PDs.
Empathetic, Respectful, and Client-First Approach
The strongest common thread in the literature is the recommendation to build therapeutic rapport with clients that is empathetic, respectful, and puts the PD diagnosis aside to provide client-first care. However, many of the studies describe how challenging this is. Clients with PDs can be inconsistent, violent, insulting, and care-refusing (Antai-Otong, 2016). The literature recommends healthcare providers anticipate this behavior, exercise self-control, set boundaries, and remember that these maladaptive behaviors stem from the clients’ intense fears of rejection (Antai-Otong, 2016; Gross et al., 2002; Ricke et al., 2012). Any rejection, avoidance, or negativity towards the client can exacerbate the clients’ fears and behaviours.
Healthcare workers’ attitudes have been found to influence other members of their team; therefore, positive role modeling is imperative to ensure the team does not perpetuate stigma and discrimination of these clients (Jones & Wright, 2017). As the recommendations above strongly align with social work practice, social workers are well suited to provide guidance and role-modeling to the interdisciplinary team. Despite the importance of a client-centered approach promoted above, carers advised using some caution (Friesen et al., 2022). While valuing the inclusion of their loved ones in decision-making, carers expressed concerns about impulsivity and poor judgement and worried that they may lack adequate insight to make good choices.
Training and Education for Healthcare Workers
The need for PD-specific education, training, and mentorship for healthcare workers was a nearly universal recommendation within the literature (Friesen et al., 2022; Acres et al., 2022; Jones & Wright, 2017; Terpstra & Williamson 2019). It was common for study participants to express discomfort and lack of confidence in working with this specific population. In order to provide good quality care, Terpstra and Williamson (2019) insist on “knowledge of the disorder, anticipation of difficult behaviors, and preparation of the team for the dynamics and interactions that ensue” (p. 26).
Connect Clients with Appropriate Services
The literature demonstrates that healthcare workers’ negative attitudes towards people with PDs create barriers to accessing appropriate services. Workers should take suicidal ideation very seriously and connect clients to crisis and psychiatric/psychological services (Acres et al., 2022; Antai-Otong, 2016). In order to intervene effectively, Friesen et al. (2022) recommends responding to “pink flags,” before a crisis builds. To improve access to services, a clear pathway of services should be mapped for clients. Additionally, healthcare workers should advocate for clients as they are often perceived to be “too difficult” to engage in services (Friersen et al., 2022; Acres et al., 2022).
Limit and boundary-setting is essential for working with people with PDs to provide stability and consistency, even if the clients object at first. Inconsistency or overstating abilities can easily break trust and rapport (Gross et al., 2002; Antai-Otong, 2016). Setting boundaries can include enforcing policies, reminding patients of expected behaviour, and keeping relationships strictly professional (Gross et al., 2002). When working with people with personality disorders, healthcare workers must skillfully maintain the delicate therapeutic relationship while also firmly holding boundaries.
Inclusion of Clients’ Family/Carers
Several articles assert that critical supports are overlooked when family/carers are not included in planning and decision-making (Acres et al., 2022; Friesen et al. 2022). Carers are often the most important protective factor for a person with PD. However, it is important to remember that carers are likely struggling also. Therefore, healthcare teams should provide carers with support, psychoeducation, and skills so that they can better care for their loved ones (Friesen et al., 2022).
Support for Healthcare Workers
Increased workplace support is vital for healthcare workers to manage personal reactions, frustration, and feelings of futility when working with people with PD. Interviews with healthcare workers identified the benefits of working in a team, consulting, and receiving support from colleagues (Friesen et al., 2022). Additionally, workers noted the value of receiving validation from supervisors. Acres et al. (2022) recommend mental health nurses work alongside EC nurses to help navigate some of the unique challenges of working with people with PDs; although, social workers’ skillsets could potentially provide some of this support also.
Other Recommendations Unique to Working with People with Personality Disorders
Because people with PDs appreciate consistent and reliable relationships, they could benefit from regular check-ins from social workers during their hospital stay. When establishing services outside the hospital, Gross et al. (2002) suggest arranging for more frequent appointments (e.g. with a GP) than would be typical. To avoid “splitting” and triangulating, conscientious team coordination and inclusion of the client in meetings may be helpful (Terpstra, & Williamson 2019). Healthcare workers should use immediacy to address relationship issues in the moment and actively modify their style align with the presentation of the client (Willmot & Tetley, 2010).
In order to build a trusting therapeutic relationship, clients with PDs’ typically require a significant amount of time, patience, and consistency, which is difficult to achieve in a hospital setting. A lack of trusting therapeutic relationships in hospital can lead to extremely poor health outcomes for people with PDs (Acres et. al., 2022). Therefore, existing trusting relationships (i.e. friends, family, or other professionals) should be utilized to help support the patient while in hospital. Or, social workers can help establish supports outside of the hospital if the client does not already have them in place.
Although authors agree that PD-specific training is critical for providing effective care, the literature demonstrates a general absence of such training. Additionally, mental health nurses noted that while they appreciate the importance of boundaries when working with people with PDs, they require practical skills training to learn how to do so (Jones & Wright, 2017).
The common discourse in the literature is not client-centered. Typically, research identifies difficulties in working with people with personality disorders and solicits solutions from healthcare workers and clients’ carers. However, research rarely seeks advice from the clients themselves to find out why healthcare systems are poorly suited to meet their needs.
The recommendations for healthcare workers to remain calm, non-reactive, and empathetic requires significant worker tenacity and patience. It is unrealistic to expect this at a time of pandemic, worker shortage, worker burnout, and insufficient support.
The literature clearly identifies challenges of working with people with PDs in a hospital setting. Patients are treated with stigma and face poor health outcomes and shorter lifespans. There is strong consensus about how healthcare workers can improve the experiences of people with PDs. For example, with increased training and support, workers can build confidence and approach PD clients with more empathy, patience, and genuine respect. Since recommendations in the literature align strongly with social work practices; social workers are in a good position to provide psychoeducation and model positive behavior within the interdisciplinary team. Although the literature suggests a clear pathway to improving experiences for people with PDs; the reality is that healthcare workers are already stretched to their limits, staffing shortages are depleting workers’ resilience, and leadership support is often insufficient to meet workers’ needs. A more critical systems analysis will be required to implement the recommendations from the literature. In the meantime, it is hoped that the information in this paper will be helpful for social workers to better understand “difficult” patients and gain therapeutic skills to improve healthcare experiences and outcomes of people with personality disorders.
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