Family members’ knowledge about borderline personality disorder: correspondence with their levels of depression, burden, distress, and expressed emotion

Family members’ knowledge about borderline personality disorder: correspondence with their levels of depression, burden, distress, and expressed emotion

Perry D. Hoffman

Borderline personality disorder (BPD) is a severe and generally chronic disorder that presents patients and their family members with multiple challenges. Little is currently known about how much family members of patients with BPD know about this disorder. Thirty-two family members of BPD patients were assessed for their level of knowledge about BPD. Knowledge level was then correlated with family members’ burden, depression, distress, and expressed emotion. Contrary to expectation, greater knowledge about BPD was associated with higher levels of family members’ burden, distress, depression, and greater hostility toward patients. These findings raise concerns about (a) the value of information family members receive about BPD and (b) the importance of the source and accuracy of the information they receive. Further research is warranted and may provide additional information to this understudied area.

Fam Proc 42:469-478, 2003


BORDERLINE PERSONALITY DISORDER (BPD) is a severe and chronic disorder that is almost always co-morbid with other conditions (Gunderson, 2001). It is a difficult disorder to experience, both from the perspectives of patients and from the perspectives of their family members (Hooley & Hoffman, 1999). It is also a disorder that is difficult to treat. Seven of the nine BPD symptoms listed in DSM-IV (American Psychiatric Association, 1994) affect relationships directly: fears of abandonment, intense anger, unstable relationships, impulsivity, suicidal or parasuicidal behavior, affective instability, and identity disturbance/difficulty with sense of self. The remaining two possible BPD criteria, feelings of emptiness and stress-related paranoia or dissociation, affect family members indirectly.

Although the experiences of family members who have a relative with BPD are not welt documented in the established literature, family members often report feelings of confusion, ignorance, and incompetence (Fruzzetti & Fruzzetti, in press; Hoffman, 1998; Hoffman, Fruzzetti, & Swenson, 1999). It seems reasonable to suggest therefore, that educating family members about the disorder would be an important way to help alleviate the burden that family members experience.

The past few decades have provided us with a much better understanding of the needs of families of psychiatric patients in general. Family members have moved from being viewed as collateral “patients” and are now regarded as collateral “providers” (Marsh, 1992). However, families need help and guidance in these new roles. To this end, several standardized family programs have been developed and are now commonly used for disorders such as schizophrenia and bipolar disorder (McFarlane, Link, Dushay, et al., 1995; Miklowitz & Goldstein, 1997).

In the family education programs, family member participants are given facts and data on such topics as the characteristic symptoms of the disorder, its etiology, treatment options, medication availability, and prognosis. Research on both family psychoeducation and family education models documents that family member participation is related to positive patient outcome as well as to increased family member well-being (Anderson, Hogarty, & Reiss, 1986; Falloon, Boyd, McGill, et al., 1982; Leff, Kuipers, Berkowitz, et al., 1982; McFarlane et al., 1995; Miklowitz & Goldstein, 1997). To date, no established family-based education programs exist for the family members of BPD patients. Indeed, it is not even clear how much the family members of patients with BPD actually know about the disorder, where they obtain their information from, and how helpful such knowledge is to them. This preliminary, prospective study explored the levels of knowledge family members had, the extent to which family members’ knowledge was correlated with a range of variables assessing their well-being and whether or not the level of BPD knowledge in family members is associated with characteristics of BPD patients. Specifically, we hypothesized that greater knowledge about BPD would be associated with lower levels of burden, depression, hopelessness, and fewer symptoms of psychological distress in family members. We further hypothesized that family members who were more knowledgeable about BPD would be less likely to express high-expressed emotion (EE) attitudes (Butzlaff & Hooley, 1998) such as criticism and hostility, and more likely to score high on such EE scales as emotional overinvolvement (EOI), warmth, and positive remarks.

Data for the study were collected from June 1999 to February 2001. Patient subjects were between the ages of 18 to 49, and consisted of 30 females and 2 males. Family member participants were between the ages of 28 and 77 years old, and consisted of 19 females and 13 males. All patient and family member participants provided written informed consent as approved by the Institutional Review Board of Weill Medical College of Cornell University.



Patient participants 18 to 49 years of age were recruited from the Personality Disorder Programs at New York Presbyterian Hospital-Weill Medical College of Cornell University in White Plains, New York. Thirty-two patients (30 females, 2 males), along with 39 family members met inclusion criteria. Seventy-eight percent of patient participants were recruited from a day program, 12% from an inpatient unit, and 10% from the hospital-based outpatient service. Twelve percent of the participants had never been hospitalized for psychiatric reasons.

Potential participant patients were considered for entry into the study if they: (a) carried BPD diagnosis assessed by the Structured Clinical Interview for DSM-IV Axis II Personality Disorders (First, Gibbons, Spitzer, & Williams, 1995), (b) were between the ages of 18 and 50, and (c) thought that their key relative/significant other would be willing to participate. Exclusion criteria were: (a) a history of schizophrenia or schizoaffective disorder, (b) active psychosis, or (c) acute substance intoxication.


The mean age of patients was 30 years (SD = 10.17), with a range of 18 to 49 years. Mean number of inpatient hospitalizations was 5 (SD = 6.02) and the mean score on the Global Assessment of Functioning (Endicott, Spitzer, Fleiss, & Cohen, 1976) rated by the admitting hospital clinician was 42.5 (S = 7.2; range 30-60). With regard to education, 44% of patients had completed some college and 34% had completed college or beyond. Seventy-two percent of these patients reported an annual income of less than $20,000, with the most commonly reported occupation being clerical positions, followed by unskilled worker jobs. Data were collected from thirty-nine family members. Seven patients listed two family members as contacts for this study, and all family members listed were interviewed. To avoid complications with the error structure in the statistical analyses (i.e., the fact that scores from two family members from the same patient may be more highly correlated than scores of family members for separate patients), one family member for each of these seven patients was randomly chosen for inclusion in the following analysis. The average age of family member participants was 51 years (SD = 10.9), with a range of 28 to 77 years. Nineteen family members were female, 13 were male. Seventy-eight percent of BPD patients lived with the family member who participated in this study. Of the 32 family members, 22 were parents (16 mothers; 6 fathers), 6 were husbands, and 4 were partners (2 were same sex partners). Forty-seven percent were college graduates. Fifty-six percent of family members reported an annual income above $50,000.


Participants were administered a battery of in-person interviews and self-report instruments. Study participants were interviewed by doctoral students who had been trained to administer the Structured Clinical Interview for DSM-IV.

To assess patients, the following assessment tools were used: (a) SCID for DSM-IV, (b) Beck Depression Inventory (BDI; Beck, Ward, Mendelson, et al., 1961), and (c) Brief Symptom Checklist (BSI; Derogatis & Melisaratos, 1982).

Family members completed: (a) the Beck Depression Inventory, (b) the Beck Hopelessness Scale (BHS; Beck, Weissman, Lester, 1974), (c) the Burden Assessment Scale (BAS; Reinhard, Gubman, Horowitz, & Minsky, 1994), (d) the Brief Symptom Checklist, and (e) the Camberwell Family Interview (CFI; Vaughn & Left, 1976), which measures the expressed emotion scales of emotional overinvolvement, hostility, warmth, positive remarks, and criticality. Expressed emotion interviews were conducted by doctoral students who had received appropriate training. Tapes were coded by an independent, trained rater who had achieved the accepted level of reliability (minimum ICC = 0.70) on the three major expressed emotion scales: critical comments, hostility, and emotional overinvolvement. The rater was blind to all other measures in the study.

Family members’ knowledge about BPD was assessed using the Knowledge Assessment Interview (KAI; Hoffman & Hooley, 1999). The KAI is an 18-item, semi-structured audiotaped interview that was developed specifically for this study (see Table 1). The knowledge variable used in the data analysis was a rating based on 16 of the 18 KAI items because two of the items did not elicit knowledge information about the disorder. This 16-item knowledge measure demonstrated high internal consistency reliability with an alpha of .93.

The KAI items were open-ended questions designed to elicit factual information, both directly and indirectly, thus allowing respondents to offer as much or as little information as they chose. Examples of questions from the KAI are: 1) What is the nature of your relative’s problems?, 2) What have you been told?, 3) To what extent do you think it is accurate?, 4) Can you name his or her symptoms?, and 5) Is he or she on medication? Some questions ask participants to communicate factual information that they know, such as symptoms and medications, while other questions ask participants about their efforts to seek more knowledge from the internet, readings, or meetings. Some questions asked participants their educated opinion, such as “Do you think your BPD relative needs medication?” The content of responses varied widely among participants. The level of accuracy in respondents’ knowledge was judged according to the most current research at the time the study was conducted.

After the KAI was completed, each audiotaped interview was coded by three independent evaluators, two research assistants, and the first author. To code the interviews, evaluators followed a series of guidelines created by the first author of this study, who was the primary designer of the KAI (Hoffman & Hooley, 1999). (1) Interrater reliability among these three evaluators was very high, with a kappa statistic of .95. A total composite score of knowledge was drawn based on the breadth and depth of information provided by each participant. Using a 1 to 5 scale, an overall rating of knowledge for each interview was given, with 1 equal to “no or low knowledge about the specifics of BPD” and 5 equal to “high level of knowledge about BPD.” Ratings were based on the family member’s ability to provide accurate facts about BPD and about the patient’s diagnosis, as well as the amount of detail and depth the relative supplied in response to the KAI questions.

A rating of 1 was assigned if the relative did not name BPD as the diagnosis assigned to the patient. A rating of 2 was assigned if the relative knew the patient had been diagnosed with BPD, but displayed no further knowledge about the disorder. A rating of 3 was assigned if the relative displayed partial knowledge about the disorder. A rating of 4 was assigned if the relative provided accurate information in response to all but one area of the KAI.

A rating of 5 was assigned when a relative was able to provide accurate information in response to all KAI questions. Such a relative would express accurate and in-depth knowledge about the patient being diagnosed with BPD, whether or not the patient was on medication and which ones, the age of onset for BPD, the gender prevalence of the disorder, available treatments, and whether or not the relative reported seeking information on the disorder.


More than one-third of family members knew surprisingly little about the disorder from which their patient-relative was suffering. More specifically, 36% scored low (a score of 1) on level of knowledge. A further 36% of family members received a medium score on the KAI (a 2 or 3), and 38% of family members scored high on this measure (a 4 or 5). The mean level of family member knowledge was 2.8 (SD = 1.7). See Table 1 for percentages of family members who provided accurate/correct responses for each item.

What did a low score on the KAI actually mean? Responders in the low category (who earned a rating of 1) were unaware even of the diagnosis that had been given to their patient-relative. Responders in the medium category, who earned a rating of 2 or 3, could not describe their relative’s symptoms accurately and were able to answer relatively few questions about the disorder. This contrasts with the high score group (scores of 4 or more) in which individuals listed the criteria for the disorder; knew relative’s medication names; displayed knowledge about available treatments, statistics about age of onset; and prevalence in men vs. women; and similar pieces of information.

Knowledge and Emotional Well-Being:

Table 2 provides descriptive statistics on the emotional well-being of family members. Correlations between emotional well-being and level of knowledge about BPD are provided in Table 3. All statistical tests performed for these analyses are two-tailed tests.

Contrary to prediction, higher levels of knowledge about BPD on the part of the relative were associated with higher scores on the Beck Depression Inventory, the Brief Symptom Checklist, and the Burden Assessment Scale. In other words, family members who knew more about BPD tended to be more depressed, to report more psychological distress, and to report higher levels of burden than family members who knew less about the disorder. There was also a nonsignificant trend toward more knowledgeable family members reporting more feelings of hopelessness.

Family member’s age, income, and education; patient’s present clinical state, age, Brief Symptom Inventory score, Life Problems Inventory, Reasons for Living score; and whether or not patient and relative lived together were tested as possible covariates for the relationship between knowledge and emotional well-being outcomes. Only family member’s age proved to be significantly related to burden and depression and was, therefore, entered into regression analyses as a control variable.

Family member’s age was significantly related to burden [r (29) = -.39, p < .05] and depression [r (29) = -.38, p < .05]. Younger family members reported more burden and more depression. However, after controlling for family member's age, knowledge still predicted a significant portion of variance in family member's burden (see Table 4). The same was true for knowledge and depression. When age was entered first into the regression equation, knowledge still explained a significant amount of remaining variance in depression. Knowledge was associated with family member scores on the Brief Symptom Checklist, [beta] = .65, t (27) = 4.44,p < .01, with a shared variance of 42%.

Knowledge and Expressed Emotion: Table 5 shows the relationships between overall family member knowledge and each of the five EE subscales. To correct for positive skewness, the critical comments subscale was transformed using the square-root transformation; this transformed variable was then used in the analyses.

Critical comments: A positive statistical trend resulted for the correlation between critical comments and knowledge, r (27) = .34, p = .07. The more knowledge the relative had, the more critical comments they made during the EE interview.

Hostility: Knowledge was significantly and positively correlated with hostility, r (27) = .40, p < .05. The more the relative knew about BPD the more likely it was that he or she would express hostility toward the patient during the EE interview.

EOI, Warmth and Positive Remarks: Family members’ overall knowledge was not significantly associated with either their level of emotional overinvolvement, r (27) = .21, p > .05, or with the frequency of the positive remarks they made about the patient, r (27) = -.14, p > .05. However, there was a negative trend for the correlation between warmth and knowledge, r (27) = -.33, p = .08. Family members who knew more about BPD tended to be rated lower on how much warmth they expressed about their relative with BPD.


More than a third of family members of patients diagnosed with BPD know very little about the disorder. Although this might seem both surprising and of concern, our data suggest that it may not be such a bad thing. Contrary to prediction, family members who were more knowledgeable about BPD did not appear to benefit from this knowledge. The more knowledgeable family members were, the more likely they were to have higher depression scores, to feel more burdened, to have more psychological symptoms, and to express hostile attitudes toward their patient-relative.

Contrary to hypothesis, hopelessness was not related to knowledge; perhaps with a larger sample size, the positive statistical trend identified between hopelessness and knowledge would have been significant. Also of importance are two trends that appeared in the analysis of the expressed emotion construct. A negative trend between knowledge and warmth indicates increasing knowledge relates to less warmth, and a positive trend between knowledge and critical comments indicates increasing knowledge may relate to more critical comments.

A number of patient and family member characteristics did not relate to family members’ self-reported level of burden, depression, or symptomatology. Although family members’ age did relate to their burden and depression levels, this relationship was not strong enough to eliminate the relationship between knowledge and burden, or between knowledge and depression.

Despite the smaller sample size in this study, statistical power was not a major limitation. In contrast to the problem of low power, which refers to the inability to detect significance because of small sample size, several statistically significant relationships were detected in this study. However, a larger sample would be of help for further exploring the trends appearing in the analyses.

These data are cross-sectional and we are unable to determine direction of effect from our correlations. We are, therefore, unable to know whether more knowledge leads to poorer emotional well-being or whether family members who are more depressed, distressed, and burdened are those that feel most motivated to learn what they can about the illness. Nevertheless, these findings question the value of simply obtaining information about BPD. They also raise some important concerns.

First, we need to understand more about the accuracy, sources, and quality of the knowledge held by family members. In contrast to other significant mental health problems, there is a paucity of established and widely held information about BPD that is available to families. Although there has not been a general consensus on several key aspects of the disorder over the years, professionals agree that BPD is complex to diagnose, difficult to understand both from its etiology and its symptoms, complicated to treat, and difficult to witness as a family member. Thus, there are many controversies about the heterogeneous beliefs about the illness (e.g., its etiology, diagnosis, prognosis). This lack of clarity promotes confusion for family members, consumers, and professionals alike and debate in the professional community about certain BPD facts raises more questions. For example, the high rate of sexual abuse, between 75-80%, is met with considerable incredulity by family members and more recently, questioned by some researchers. While the process of challenging data moves the field forward, it creates more of a morass and confusion, leaving family members even more perplexed. Thus, a core of available and useful knowledge needs to be first identified and documented by the most current research findings in order to provide accurate knowledge and information.

Along with this, while we found that family members with more knowledge about the disorder were also more hostile, it seems unlikely that accurate or balanced knowledge, presented in an objective manner, would be related to hostility. Studies of other diagnostic groups, with more established knowledge bases, find just the opposite. Again, if significant areas of misinformation exist, family members need to be disabused of such information. In addition, if more knowledge is in fact associated with more burden, depression, and overall psychiatric distress, the specific facts or aspects of knowledge that promote these stressors must be identified.

Finally, to date, family members obtain BPD information from a variety of unregulated sources (e.g., on the World Wide Web). Therefore, in addition to the difficulty in ascertaining the quality of that information and its accuracy or level of misinformation, another unknown is who seeks it out or how well the information is offered, understood, and applied. Thus, in addition to receiving information that perhaps is erroneous, family members may also be obtaining information that is portrayed in such a pessimistic manner that, in fact, “ignorance may be bliss.”

This study has several limitations that need to be addressed: (a) the small single-clinical subject sample, (b) the reliance on family members’ self-reports and (c) the use of a new and unvalidated measure of family members’ knowledge. The first item concerns the issue of limited generalizability of the findings because the sample population was homogenous in many ways. Study subjects, recruited from a suburban psychiatric hospital population in the environs of a major city, may represent one unique sample. A word of caution, therefore, is given about the results and their restrictions on fully characterizing the BPD family community, which is a very heterogeneous population as a whole. Additionally, the findings may be relevant only to those family members with relatives who come for treatment and do not reflect the families of persons with BPD who never enter the mental health system, a population often ignored but equally desperate.


Over the past decade, borderline personality disorder has been the most researched of all the Axis II disorders. Hence, there is an ever-increasing database of information that offers the BPD community, mental health practitioners, sufferers, and family members alike, considerable knowledge. Given that research shows a positive relationship between family member participation in family education and family member well-being with other psychiatric disorders, this information needs to be organized in a coma prehensive way for nonprofessionals and thus be available to more than just the research and service community (Anderson, et al., 1986; Falloon, et al., 1982; Left, et al., 1982; McFarlane et al., 1995; Miklowitz & Goldstein, 1997). Future work is needed to replicate these findings and consider in more detail what kinds of knowledge family members have on BPD, highlighting sources of information and misinformation. Although preliminary at this stage, these findings emphasize the potential importance of knowledge to the well-being of family members of patients with BPD. They also call for a more considered appraisal of this issue together with longitudinal studies that explore the issue of directions of effect in a more sophisticated and thorough way.

Many thanks to NIMH for the support for this study–Grant #K08 MH001602-04

TABLE 1 Knowledge Assessment Inventory Items and Percentages

% That Supplied

an Accurate or

Item Correct Response

Diagnosis 78.1

Do you know at what age these problems 43.8

usually start?

What treatments do you know for BPD? 31.3

What have you been told? 62.5

To what extent do you think it is accurate? 56.3

What are the symptoms? 50.0

Can you name the medications? 62.5

Do you think s/he needs medication? 87.5

Does anyone else you know have similar

problems? 53.1

Have you ever gone to any meetings for

families with relatives who have similar problems? 28.1

Have you done any reading on the subject? 50.0

Are males or females more likely to have

this problem? 53.1

If there is a t.v. show about it, how likely

are you to watch it? 59.4

Have you ever looked on the Internet for info

about the subject? 43.8

TABLE 2 Descriptive Statistics

Variable Mean SD Range

Depression 7.7 7.0 0-24

Burden 25.9 13.2 2-49

Symptom 18.8 20.3 0-85

Hopeless 4.2 4.5 0-16

EOI (a) 1.2 1.1 0-3

Hostility 0.6 1.2 0-3

Warmth 2.7 0.9 1-4

Positive remarks 4.5 3.7 0-13

Critical comments 5.3 6.9 0-32

Note: (a) represents Emotional Overinvolvement

TABLE 3 Correlation Table for Knowledge and Emotional Well-Being


Knowledge Depression Symptom Burden

Depression .52 **

Symptom .65 ** .59 **

Burden .45 ** .47 ** .47 *

Hopeless .36 ^ .41 * .47 * .28

Note: ** p < .01; * p < .05; p < .06


Hierarchical Regression Analysis Summary for Variables Predicting

Family Members’ Burden and Depression (N = 31)

Variable B SEB [beta] [R.sup.2] [DELTA]


Outcome: Burden

Step 1 .16

FM age -.53 .23 -.39 *

Step 2 .34 .18 *

FM age -.50 .20 -.37 *

FM knowledge 3.38 1.21 .43 *

Outcome: Depression

Step 1 .14

FM age -.25 .11 -.38 *

Step 2 .40 .26 *

FM age -.24 .10 -.36 *

FM knowledge 2.07 .59 .51 *

Note: * p < .05; FM represents the term "Family member's"

TABLE 5 Correlation Table for Knowledge and Expressed Emotion Subscales


EOI .21

CC .34 ^ .05

H .40 * .18 .66 ***

W -.33 ^ .51 ** -.39 * -.22

PR -.14 .51 ** -.22 -.00 .76 ***

Notes: K = Knowledge, EOI = Emotional Overinvolvement, CC = Critical

Comments, H = Hostility, W = Warmth, PR = Positive Remarks;

*** p < .00; ** p < .01; * p < .05; ^ indicates a trend p < .10

(1) The development, coding and usage of the KAI are documented in a manuscript currently in progress.


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Perry D. Hoffmann is at the Department of Psychiatry, Weill Medical College of Cornell University; National Education Alliance for Borderline Personality Disorder.

Ellie Buteau is at the Department of Psychology, City University of New York Graduate Center.

Jill M. Hooley is at the Department of Psychology, Harvard University.

Alan E. Fruzzetti is at the Dept. of Psychology, University of Nevada.

Martha L. Bruce is at the Department of Psychiatry, Weill Medical College of Cornell University.

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