Content uploaded by Brin F S Grenyer
Author content
All content in this area was uploaded by Brin F S Grenyer on May 10, 2018
Content may be subject to copyright.
Burden and Support Needs of Carers of Persons
with Borderline Personality Disorder: A
Systematic Review
Rachel C. Bailey, BA Psych (Hons), and Brin F. S. Grenyer, BA (Hons), MSc, PhD
Background:A major feature of personality disorders is significant impairment in interpersonal functioning, which
may create challenges in close relationships. This article aims to systematically review the experience of carers of
persons with personality disorders.
Method:The PRISMA systematic review method was followed, and empirical studies written in English, published be-
tween 1996 and 2011, and cited in major electronic databases were searched. Studies meeting the following selec-
tion criteria were included: (1) carers or families of persons with personality disorders; (2) intervention involving the
carers or families; (3) burden or related construct used. Studies were required to meet either criteria 1 and 3 or criteria
2 and 3. Reference lists were scanned, and experts were consulted for further studies.
Results:Six studies met inclusion criteria, representing data on 465 carers. Five of the six studies focused on carers of
persons with borderline personality disorder. The findings indicated that carers experience elevated objective and
subjective burden, grief, impaired empowerment, and mental health problems, including depression and anxiety.
Scores on objective and subjective burden were half a standard deviation above the mean compared to carers of
inpatients with other serious mental illnesses.
Conclusions:This study is the first to report data on a large, aggregated sample of carers of persons with personality
disorders. Significant gaps in the literature remain, and it is recommended that future research focus on the burden
and support needs of carers of persons across different personality disorders, that attention be paid to the gender bal-
ance of patients, and that data be reported in a way to allow meta-analysis.
Keywords: borderline personality disorder, burden, carer, intervention, personality disorder, support
Personality disorders (PDs) occur in the context of
relationships
1
and may be characterized by chroni-
cally dysfunctional patterns in relating to others.
For example, the most widely researched PD, borderline
personality disorder (BPD), is defined by the Diagnostic
and Statistical Manual of Mental Disorders (DSM-IV) as
involving a pervasive pattern of instability within interper-
sonal relationships, poor self-image, affect dysregulation,
and marked impulsivity.
2
BPD symptoms, such as impul-
sive anger and self-harm, and consequent burdens, such
as therapy bills and a disharmonious household, would
likely have adverse effects on relationship patterns, parti-
cularly with close relatives, partners, families, and carers.
Likewise, the other PDs defined by DSM-IV all include
problems in interpersonal relationships and maladaptive
relational styles as essential criteria.
2
It is therefore perhaps
surprising that so little research has been directed at under-
standing the experience of families, partners, and carers of
persons with PDs.
3,4
The prevalence of PDs in community samples has varied
from 4.4%
5
to as high as 20%,
6,7
and a recent review found
a prevalence of approximately 11% in community samples.
8
Considering that each of these persons with a PD likely has at
least one partner, carer, or family member supporting him or
her, these figures imply that a substantial number of persons
in the broader community are affected by PDs.
Despite the high prevalence of PDs, carers of people with
PDs have been stigmatized and not given adequate attention
in the research literature. Early research regarding families
of persons with BPD was dominated by findings of family
trauma, abuse, neglect, and psychopathology.
9–11
These find-
ings resulted in the perception of carers of persons with BPD
as toxic to the patient’s recovery and as causing their difficul-
ties.
12,13
However, the ongoing trend toward community-
based care and away from hospital-based care has resulted in
families and carers taking on more and more responsibility
From the Illawarra Health and Medical Research Institute, University of
Wollongong, Australia.
Original manuscript received 2 October 2012, accepted for publication
subject to revision 3 December 2012; revised manuscripts received 22
February and 18 June 2013.
Correspondence: Brin F. S. Grenyer, PhD, School of Psychology, Uni-
versity of Wollongong, New South Wales 2522, Australia. Email: grenyer@
uow.edu.au
© 2013 President and Fellows of Harvard College
DOI: 10.1097/HRP.0b013e3182a75c2c
REVIEW
248 www.harvardreviewofpsychiatry.org Volume 21 •Number 5 •September/October 2013
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
for the care of those with mental illness, including PDs.
13
Research on, and understanding of, carers of persons with
mental illness has consequently increased, serving to modify
negative attitudes about carers.
14
For instance, support groups
for families and carers of people with schizophrenia have
been found to reduce carer psychological distress, increase
family functioning, and benefit the caregiving relation-
ship.
14–16
At present, however, the unique burden and sup-
port needs experienced by families, partners, and carers of
persons with PDs have remained under-researched.
3,4
The etiology of PDs is no longer considered to be the
direct result of parental style, trauma, abuse, or neglect,
but rather an interaction of many factors that define a
biopsychosocial model of BPD development.
17–21
Although
parental mental illness and harsh parental style may be as-
sociated with PD development,
22
further research is needed
to determine how these experiences contribute to the devel-
opment of adult psychopathology.
20,23,24
The biopsychosocial
model of PD development recognizes that many factors,
including biological variation (such as genetic heritability)
and psychosocial experiences (such as adverse childhood
experiences and temperament), may contribute to PD devel-
opment.
23,25
In view of this changed understanding, families
and carers have come to be seen as important collaborators
in the recovery effort for patients with PDs.
12,13
The model
also recognizes that carers may experience negative effects
from the maladaptive relational dynamics characteristic of
those with PDs. Research has begun to focus on the unique
experience of burden, support needs, and demands placed
upon families, partners, and carers of those with PDs.
The present study aims to systematically review and syn-
thesize the emerging literature on this topic, and to identify
any gaps that need to be addressed in future research. For
the purpose of the study, carer was defined as any person (bi-
ologically or nonbiologically related) who provides regular
ongoing care, support, and assistance to persons with PDs.
METHODS
Protocol and Registration
This review followed the Preferred Reporting Items for Sys-
tematic Reviews and Meta-analysis (PRISMA) Statement for
Reporting Systematic Reviews
26
and additional guidelines
for conducting and reporting systematic reviews.
27
Methods
of data collection and inclusion criteria were predetermined
and documented in a protocol (available at http://www.crd.
york.ac.uk/PROSPERO/Display_record.asp?ID=CRD42012001961).
The protocol was registered by the International Prospec-
tive Register of Systematic Reviews (PROSPERO; registra-
tion number CRD42012001961).
Data Sources
Studies were identified in three phases: electronic databases
were searched; reference lists were scanned; and experts
were consulted. The three phases were completed from
January to March 2012.
SEARCHING ELECTRONIC DATABASES Psychology and Behavioral
Sciences Collection, PsycInfo, PubMed, Scopus, and Web
of Science were searched for eligible studies. Search terms
used for each database included the following: (Carer OR
family) AND (personality disorder OR borderline personal-
ity disorder OR personality traits) AND (support OR inter-
vention OR therapy OR treatment OR counselling OR
service) AND (burden OR grief OR wellbeing OR guilt).
SCANNING REFERENCE LISTS The reference lists of studies in-
cluded from the electronic database phase were scanned
for further eligible studies.
CONSULTATION WITH EXPERTS A list of the included studies
was sent to experts in the area of research, inviting contri-
bution of any further studies that may meet criteria. Ex-
perts were determined as having authored or co-authored
three or more included studies from the initial search of
electronic database phase.
Study Selection
One author reviewed the identified studies, which were
then checked by an expert in PDs who was blind to prestige
factors, including authors, institutions, journal titles, and
publishers. No disagreements of inclusion were experi-
enced. The inclusion criteria were as follows:
1. Carers or families of persons with PDs
2. Intervention involving the carers or families (predominately
for carer or family outcome)
3. Burden of carers or families (or related construct, such
as grief or guilt)
4. Empirical studies (excluding anecdotal accounts,
reviews, book chapters, and editorials)
5. Published during the last 15 years (1996 to 2011)
6. Published in English
Inclusion required the study to meet criteria 1, either 2 or
3, and 4 through 6. In this way, the studies must have inves-
tigated either a support intervention for families and carers
of persons with PDs or the burden experienced by such
carers, and they must have been empirical in design and
published during the last 15 years in English.
Data Extraction and Risk of Bias
One reviewer extracted data from the included studies.
The data-extraction form listed the source, design, aim,
participants, findings, and limitations. Due to the small
number of studies that met inclusion criteria, no validity-
assessment techniques were used. Risk of selection bias
was minimized by using a blind rater and varied methods
of study sourcing.
Carers of Persons with Borderline Personality Disorder
Harvard Review of Psychiatry www.harvardreviewofpsychiatry.org 249
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
RESULTS
Search Results
SEARCH OF ELECTRONIC DATABASES The search of electronic
databases resulted in the identification of 504 studies (437
with duplicates removed). Of these, 421 were excluded as
their titles or abstracts clearly indicated that they did not
meet the inclusion criteria. Of the remaining 16 studies,
11 were excluded because they were not specific to PDs
(n = 9) or because they mixed PDs with other diagnoses
(n = 2). This phase thus identified 5 studies for inclusion
in the systematic review.
SCANNING OF REFERENCE LISTS The scanning of reference lists
identified a total of 145 citations from the 5 studies gener-
ated from the search of electronic databases (129 after
duplicates and studies already included were removed). Of
these, 123 studies were excluded as their titles or abstracts
clearly indicated that they did not meet the inclusion crite-
ria. Of the remaining 6 studies, 5 were excluded because
they were not specific to PDs (n = 3) or not empirical (n = 2).
Therefore, this phase resulted in one further study included
in the systematic review.
CONSULTATION WITH EXPERTS Three experts were identified
and contacted, but no additional studies were suggested
or included in the study.
TOTAL STUDIES INCLUDED Based on the above process, 6 stud-
ies were included in the systematic review. Figure 1 depicts
the flow of identified and eligible studies.
Study Characteristics
Since the included six studies were heterogeneous in both
design and methodology, statistical aggregation in the form
of a meta-analysis was not indicated. Three of the included
studies met all six criteria, being pre/post evaluations of
support interventions for carers of persons with PDs.
1,28,29
These three studies were not randomized and included
small sample sizes. Additionally, two of these studies in-
cluded short follow-up periods when compared to studies
evaluating interventions with carers of persons with Axis I
disorders,
30–32
and the same two studies were specific to
carers of persons with BPD.
1,29
The third of these three
studies, while providing only minimal data, included carers
of persons with any PD.
28
Figure 1. Flow chart of studies identified for review.
R. C. Bailey and B. F. S. Grenyer
250 www.harvardreviewofpsychiatry.org Volume 21 •Number 5 •September/October 2013
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
The remaining three of the included studies met criteria
1 and 3 through 6; as such, they used constructs such as bur-
den and well-being to assess the impact of caring for persons
with PDs.
33–35
These three studies were specific to carers of
persons with BPD.
It is worth noting that the included studies were pub-
lished from 2003 to 2010, and that four of the six studies
were published from 2007 to 2010. The characteristics of
the included studies are summarized in Table 1.
Finally, though the methodology was designed to cap-
ture relevant studies on carers of persons with any PD, five
of the six included studies specifically focused on carers of
persons with BPD. Consequently, though the results and
discussion will sometimes refer to PDs rather than BPD, it
should be understood that the results are primarily focused
on BPD.
Sample Characteristics
The six included studies reported on a total of 465 carers.
However, demographic and empirical data that could be
aggregated were available only for carers of persons with
BPD. Table 2 outlines the available aggregated data on
the characteristics of the carers, and Table 3 outlines the
available aggregated data on the characteristics of the
persons with BPD.
Main Findings
BURDEN Carer burden was measured by five of the six in-
cluded studies (see Table 1). Data from the Burden Assess-
ment Scale (BAS)
36
was used by three included studies for
carers of persons with BPD. The BAS is a 19-item measure
of objective and subjective burden, in which higher scores
indicate greater burden. Objective burden relates to the ob-
servable behavioral effects of caregiving (such as financial
problems and household disruption), whereas subjective
burden involves feelings, attitudes, and emotions expressed
about the caregiving experience (such as embarrassment
and guilt).
36,37
The aggregated BAS data resulted in an av-
erage score of 43.91 (n = 131; standard deviation [SD] =
11.62) for carers of persons with BPD. By contrast, using
the same measure of burden (the BAS), average scores have
been reported as 38.54 (n = 135; SD = 13.27) for carers of
psychiatric inpatients with mood, substance, neurotic, and
psychotic disorders.
38
These mean scores were significantly
different, with a small to medium effect size: t(264) = 3.51;
p < .01; r = 0.21. Therefore, the results indicate that carers
of persons with BPD experience elevated objective and sub-
jective burden approximately half a standard deviation
above the mean compared to carers of inpatients with other
serious mental illnesses, suggesting that this difference is
likely of clinical significance.
In two of the included studies with carers of persons with
BPD, grief was measured using the Grief Scale,
39
which is a
15-item measure of current feelings of grief associated with
the mental illness of a loved one. The carer data resulted in
an average score of 54.01 (n = 99; SD = 11.14) on the Grief
Scale, with potential scores ranging from 15 to 75. This aver-
age score approximates to a mean anchor rating of 3.60
(SD = 0.74; between “Sometimes True” and “Often True”).
Previous research with carers of inpatients with schizophre-
nia or major affective disorders have resulted in mean anchor
ratings of 3.30 (n = 180; SD = 0.95).
39
The mean anchor
ratings were significantly different, with a small effect size:
t(277) = 2.72; p < .01; r = 0.16. Therefore, the results sug-
gest that carers of persons with BPD experience elevated
grief compared to carers of persons with other serious
mental illnesses.
In two of the included studies with carers of persons
with BPD, empowerment was measured using the Family
Empowerment Scale (FES),
40
a 34-item scale based on
two dimensions: the level of empowerment (family, service
system, community/political) and the way that empower-
ment is expressed (attitudes, knowledge, behaviors). The
measure was originally developed for use with families of
children with emotional disabilities. The aggregated FES
data for carers of persons with BPD resulted in an average
score of 38.74 (n = 99; SD = 13.09). Previous research has
reported average scores of 119.43 (n = 67; SD = 14.49) for
a sample of carers for disabled children in the United
States.
41
These mean scores were significantly different, with
a large effect size: t(164) = 37.31; p < .0001; r = 0.95. This
finding indicates not only that carers of persons with BPD
are burdened and grieving, but that their sense of empow-
erment is seriously impaired. This lack of empowerment
is likely of clinical significance since it is five standard
deviations lower than the mean endorsed by carers of dis-
abled children.
CARER WELL-BEING The carers’ own mental health and well-
being was measured in five of the six included studies (see
Table 1). Two of the studies measured depression experi-
enced by carers of persons with BPD with the Revised Cen-
ter for Epidemiological Studies Depression Scale,
39
yielding
an average score of 27.10 (SD = 8.84), with a potential range
of 0 to 60. Previous research with carers of persons with
schizophrenia or major affective disorder resulted in an aver-
age score of 15.84.
39
Unfortunately, the previous data with
carers of persons with schizophrenia or major affective disor-
der did not report the standard deviation, which would have
allowed statistical analysis of the difference in mean scores
on carer well-being. However, the difference between the
above means is clinically significant. Scores higher than 16
have been interpreted as indicating clinical depression,
39,42
which was exceeded by carers of persons with BPD (mean =
27.10) yet not by previous research with carers of persons
with schizophrenia or major affective disorders (mean =
15.84). Therefore, carers of persons with BPD experience
symptoms consistent with samples with clinical depression.
One study used the Symptom Checklist–90 and found
that Dutch carers of persons with BPD were elevated on
Carers of Persons with Borderline Personality Disorder
Harvard Review of Psychiatry www.harvardreviewofpsychiatry.org 251
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
Table 1
Summary of the Included Studies
Source Design Aims Participants Findings Limitations
Hoffman et al.
(2003)
34
Cross-sectional
interviews
Explore the extent to which
family members’knowledge
of BPD is correlated with
well-being
32 family members of
persons with BPD
(59% female; 69%
parents; mean age
51 years)
Over a third of family members
were unaware of the diagnosis; a
further third could not accurately
describe the symptomatology
Greater knowledge was correlated
with higher depression, burden,
psychological symptom scores
& hostility
Small sample size; causality
cannot be inferred
Family members’sources of
information (e.g., Internet,
books, professionals) were
not indicated
Limited to carers of persons
with BPD
Hoffman et al.
(2005)
29
Pre- &
post-intervention
Pilot study evaluating the
12-week Family Connections
intervention for carers of
persons with BPD
44 carers representing
34 families of persons
with BPD (88.6%
parents, of which 61.4%
were mothers; mean
age 55.5 years)
Overall burden & grief decreased
significantly from pre- to post-
intervention; mastery significantly
increased; depression & perceived
burden did not change
During the 6-month post-baseline
follow-up, overall burden
continued to significantly
decrease; gains in mastery & grief
were maintained
Included a short follow-up
period compared to
evaluations of Axis I
carer-support
interventions
30–32
HLM analysis indicated that
asignificant amount of variation
in change over time could be
explained by family variables
(which was not explored)
Limited to carers of persons
with BPD
Hoffman et al.
(2007)
1
Pre- &
post-intervention
To replicate previous Family
Connections findings &
to evaluate whether pre- &
post-intervention measures
demonstrate gender
differences
55 carers of persons with
BPD (unclear how
many unique families
represented; 57% female;
77% parents; mean age
53.4 years)
Findings of previous research
were replicated:
During the 6-month, post-baseline
follow-up, grief continued to
significantly decrease; all other
improvements were maintained
New findings:
At pre-intervention, women
endorsed significantly higher
grief & subjective burden
Controlling for baseline scores, no
significant gender differences
were identified at post-intervention
Women showed significantly
greater reductions in subjective
burden & grief post-intervention
Included a short follow-up
period, with no measure
of change in the caregiving
relationship or patient
symptom severity
Initial & present study contained
generally modest effect sizes for
outcome variables
Limited to carers of persons
with BPD
R. C. Bailey and B. F. S. Grenyer
252 www.harvardreviewofpsychiatry.org Volume 21 •Number 5 •September/October 2013
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
Table 1
Continued
Source Design Aims Participants Findings Limitations
Scheirs & Bok
(2007)
35
Cross-sectional
survey
To investigate the
influence of BPD on the
psychological well-being
of carers
64 Dutch carers of persons
with BPD (44 female;
mean age 44.8 years);
36 were biologically
related (e.g., parents) & 28
unrelated (e.g., partners)
Carers scored significantly
higher than the general Dutch
population on all SCL-90
symptom dimensions
There was no significant difference
between caregiver groups,
except for somatization (those
biologically related to patient
scored higher) & hostility (those
unrelated to patient scored higher)
Older age & being female was
associated with higher depression
scores
Included no measure of the
relationship’s duration &
therefore of potential
exposure to the person
with BPD
Causality cannot be inferred
Limitedtocarersofpersons
with BPD
Sanders &
Pearce (2010)
28
Pre- &
post-intervention
Describe & evaluate a
group intervention for
carers of persons with
personality disorders
(OFAFE) & children of
persons with personality
disorders (YFAFE)
28 carers in OFAFE group,
9 in YFAFE group (10–17
years old); no demographic
information was provided
specific to these samples;
carers were supporting
apersonwithany
personality disorder
OFAFE evaluation showed
nonsignificant trends toward a
reduction in isolation & burden
No empirical data were provided
regarding the evaluation of YFAFE
Pilot study with a small
sample size
Minimal empirical data provided
for evaluating OFAFE; no data
provided for evaluating YFAFE
Goodman et al.
(2011)
33
Cross-sectional
Internet survey
To measure the level of
subjective burden
experienced by parents
ofadaughterwithBPD&
determine correlates of
parental burden
233 parents of daughters
with BPD (95% female;
mean age 51 years)
The majority endorsed emotional
health as being most affected,
followed by physical health &
deleterious impact on marriage
& social life
Retrospective reports of adolescent
acting-out behavior, property
destruction, delusional symptoms
& hallucinatory symptoms were
significantly correlated with
intensity of parental burden
The median out-of-pocket expense
of caregiving was U.S.$10,000
Limited to the United States (e.g.,
used U.S.$)
Empirically val idated measure of
burden not used
Results limited by self-selection
& retrospective bias
Limited to carers of persons
with BPD
BPD, borderline personality disorder; HLM, hierarchical linear model; OFAFE, Oxford Friends and Family Empowerment; SCL-90, Symptom Checklist–90; YFAFE, Young Friends and Family
Empowerment.
Carers of Persons with Borderline Personality Disorder
Harvard Review of Psychiatry www.harvardreviewofpsychiatry.org 253
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
Table 2
Available Data on the Characteristics of Carers
Studies Sample
size (n)
Characteristics of carers n (percentage
of sample)
Mean (standard deviation)
Hoffman et al. (2003)
34
Scheirs & Bok (2007)
35
Goodman et al. (2011)
33
329 Female 275 (83.6%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
Scheirs & Bok (2007)
35
Goodman et al. (2011)
33
428 Age Mean = 51.2 years
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
Goodman et al. (2011)
33
352 Parents 316 (89.8%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
131 Mothers 74 (56.5%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
131 Fathers 29 (22.1%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
131 Partner/spouse 20 (15.3%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
131 Sibling/children 8 (6.1%)
Hoffman et al. (2003)
34
Goodman et al. (2011)
33
256 College graduate or above 158 (61.7%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Goodman et al. (2011)
33
291 Income > U.S.$50,000 213 (73.2%)
Hoffman et al. (2003)
34
Hoffman et al. (2007)
1
87 Living with the person with BPD 55 (63.2%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
131 Burden (Burden Assessment Scale) Mean = 43.9 (SD = 11.62)
a,b
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
99 Depression (Revised Center for
Epidemiologic Studies Depression Scale)
Mean = 27.1 (SD = 8.8)
b
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
99 Grief (Grief Scale) Mean = 54.0 (SD = 11.1)
b
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
99 Mastery (Family Empowerment Scale) Mean = 38.7 (SD = 13.1)
b
a
Sanders and Pearce (2010)
28
also measured burden with the Burden Assessment Scale but provided no descriptive statistics; that study is therefore not
included in the calculation of this mean.
b
Hoffman and colleagues (2005, 2007)
1,29
provided descriptive statistics for multiple time points; only baseline measures were included in the calculation
of this mean.
R. C. Bailey and B. F. S. Grenyer
254 www.harvardreviewofpsychiatry.org Volume 21 •Number 5 •September/October 2013
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
all subtests of anxiety, agoraphobia, depression, somatiza-
tion, insufficiency of thinking and acting, distrust, hostility,
and sleeping problems compared to the general Dutch
population.
35
Taken together, the included studies indicate that carers
of persons with BPD experience objective and subjective
burden, grief, impaired empowerment, and their own men-
tal health problems, including depression and anxiety.
GENERALIZABILITY Five of the six included studies were spe-
cific to carers of persons with BPD, and as noted earlier,
datathatcouldbeaggregatedwereavailableonlyfor
carers of persons with BPD. Further, the majority of re-
viewed research has focused on carers of female patients
(see Table 3), and the majority of identified carers are
parents, particularly mothers (see Table 2). The search
strategy and intention was to study all PDs and to study
patients and their carers of both genders; the outcome of
this strategy revealed large gaps in the literature about
other PDs.
DISCUSSION
The present study aimed to systematically review and syn-
thesize the available demographic and empirical data on
the burden and support needs of families, partners, and
carers of persons with PDs. Although the study aimed to re-
search the broad impact of caregiving for any personality
disorder, data on the experience of carers of persons with
personality disorders other than borderline are nonexistent.
However, this study is the first to report demographic and
empirical data on the largest aggregated sample size in the
literature regarding carers of persons with BPD, resulting
in important clinical and research implications. Six studies
were eligible by the inclusion criteria.
As expected, research in the area has increased in recent
years; indeed, the earliest study included here dates from
2003. The findings suggest that carers of persons with
BPD experience elevated objective and subjective burden,
grief, and impaired empowerment, and that they may also
report suffering depression and anxiety. Interestingly, much
of the available research has been specific to parents, often
mothers, caring for persons with BPD. Further, the major-
ity of research on the experience of carers has been lim-
ited to those supporting a female person with BPD. These
limitations affect the generalizability of the findings. More-
over, the included studies did not share common methods
or outcomes; meta-analysis was not feasible.
The included studies allow some empirical insight into
the experience of supporting persons with BPD. Three of
the included studies measured the experience of burden
with carers of persons with BPD using the Burden Assess-
ment Scale. Carers of persons with BPD endorsed elevated
objective and subjective burden approximately half a stan-
dard deviation above the mean compared to carers of
inpatients with other serious mental illnesses.
38
Items of ob-
jective burden include financial problems, limitations on
carer activity, and disruption of household routines and so-
cial functioning (including significant changes in work and
in social and family life). The implication is that carers are
significantly altering their lifestyles to take into account the
needs of their relatives. In terms of subjective burdens, the
attitudes and emotions expressed about the caregiving expe-
rience include shame, stigma, guilt, worry, and resentment.
36
Therefore, not only are carers burdened in observable ways
(e.g., financially or through disrupted routines), but they
Table 3
Available Data on the Characteristics of Persons with BPD
Studies Sample
size (n)
Characteristics of person
with BPD
n
(percentage)
Mean
Hoffman et al. (2003)
34
Scheirs & Bok (2007)
35
Goodman et al. (2011)
33
329 Female 315 (95.7%)
Hoffman et al. (2003)
34
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
Goodman et al. (2011)
33
354
a
Age 27.0 years
Hoffman et al. (2005)
29
Hoffman et al. (2007)
1
89
a
Years since onset of disorder 10.8 years
Hoffman et al. (2003)
34
Hoffman et al. (2007)
1
Goodman et al. (2011)
33
320
a
Hospitalizations 3.7 times
a
Since Hoffman and colleagues (2007)
1
did not specify the number of persons with BPD in their study, the number of persons with BPD was assumed to be
equal to that of the sample size of carers (n = 55).
Carers of Persons with Borderline Personality Disorder
Harvard Review of Psychiatry www.harvardreviewofpsychiatry.org 255
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
are also burdened in their internal experience (including
conflicts around love and resentment). Previous qualitative
research by Giffin
43(p135)
with parents of persons with BPD
has documented the intense mother-daughter caregiving re-
lationship as characterized by conflicting emotions of love
and anger; as one mother noted, she “gave so much, but
got nothing in return.” Further, carers of persons with BPD
have been reported by Ekdahl and colleagues
44(pp e71,e72)
to
describe the experience as “I don’t dare to live my own life
in the same way as before, I adjust all the time and I worry,
worry every minute,” and as living a “life tiptoeing.”
Grief and empowerment were also important themes.
Carers of persons with BPD endorsed elevated grief com-
pared to carers of inpatients with schizophrenia or major
affective disorders.
39
The experience of grief has been de-
scribed in previous qualitative research by Ekdahl and
colleagues
44(p e72)
as having two dimensions. One is the loss
of the potential life that persons with BPD could have
had—a grief described as “[p]owerlessness, not being able
to help, to watch her youth go down the drain and know
that my daughter also knows.” The other is lifelong grief,
in which carers express concern for the future, especially
about who will care for the persons with PDs once the carers
themselves are no longer able to do so. Therefore, carers of
persons with BPD endorsed that they are burdened and
grieving, including being concerned for the future. Ideally,
burden and grief would be somewhat alleviated through
effective interactions with mental health services, but carers
also endorsed impaired empowerment, suggesting that such
interactions are not occurring.
The aggregated Family Empowerment Scale data indi-
cates not only that carers of persons with BPD are burdened
and grieving, but that they experience a sense of impaired
empowerment. Carers have reported difficulties with the
mental health system in previous qualitative research—
including that the system has provided inconsistent or con-
tradictory advice, lacked empathy, and failed to include
carers in treatment and in discharge planning.
43,44
Further,
carers have endorsed dissatisfaction with the clinical treat-
ment of their daughters with BPD.
33
Therefore, carers of
persons with BPD experience elevated objective and sub-
jective burden, grief, and impaired empowerment—which,
combined, would likely affect the carers’ own well-being.
The included studies also provided data specifically on
the carers’ own mental health and well-being. Data from
the Revised Center for Epidemiological Studies Depression
Scale indicated that carers of persons with BPD experience
their own mental health problems, including symptoms
consistent with depression and anxiety. A further study
reported that Dutch carers of persons with BPD endorsed
elevated anxiety and depression compared to the general
Dutch population.
35
Qualitatively, carers have described
the ongoing “tension” involved in caring for BPD patients,
with the consequence that “you don’t sleep some nights
very much at all,” as reported by Giffin.
43(p134)
Likewise,
the rollercoaster milieu of parents is evident in the remark
that “we live through our children, if they feel good we feel
good,” as reported by Ekdahl and colleagues.
44(p e72)
It nev-
ertheless remains unclear to what extent carers’ compromised
sense of well-being preceded the caregiving relationship
(and thus was a preexisting source of carer psychological dis-
tress contributing to the results) and to what extent it reflects
the burden of the caregiving role itself. That said, previous
research has reported the chronic and traumatic stress of
families and carers who have witnessed self-harm, impulsive
anger, and other destructive behaviors of their loved ones
with BPD—events that would surely cause repeated distress,
even trauma, and seriously affect carers’ well-being.
43
There-
fore, notwithstanding some uncertainty as to cause and effect
regarding carers’ sense of well-being, they experience ele-
vated objective and subjective burden, grief, impairments in
empowerment, and difficulties in their own mental health
and well-being.
Interestingly, the majority of identified carers in the in-
cluded studies have been parents (and specifically mothers)
to female daughters with BPD. The mean age of the persons
with BPD in the present aggregated sample was 27.02 years,
and the average number of years since onset was 10.76 (see
Table 3). The average age of symptom emergence was there-
fore approximately 16 years, which is consistent with pre-
vious research on the development of BPD.
45
From a
psychosocial perspective, this age is crucial in developing
both a sense of identity (often significantly impaired in per-
sons with BPD) and intimacy with others outside of the
immediate family—and thus in separating from parents. Spe-
cifically, Erik Erikson’s psychosocial theory of development
described the adolescent and early adulthood stages as in-
volving ego conflicts of identity versus role confusion and
of intimacy versus isolation.
46
It is therefore possible that
during the emergence of BPD symptoms in adolescence,
which would presumably present difficulties in developing
a sense of self and in transitioning into early adulthood (in-
cluding the formation of intimate relationships), the parent-
child (in particular, the mother-child) dyad may remain the
patient’s primary relationship. In qualitative research, for
example, the mother-daughter relationship has been described
as intensified when the daughter developed symptoms of
BPD.
43
Further, an influential case study regarding a complex
female client with BPD described the therapeutic importance
of exploring the relationship with her mother and of creating
separation in the recovery process—which facilitated the de-
velopment of an intimate relationship with a suitable part-
ner.
47
Psychosocial development theory may also be relevant
in understanding the high proportion of parents (particularly
mothers) who identified as the primary carers.
The present review serves to identify the existing limi-
tations of research concerning carers of persons, of either
gender, with PDs. The majority of research has focused on
carers of persons with BPD in particular, and data on the ex-
perience of burden, grief, empowerment, and well-being of
R. C. Bailey and B. F. S. Grenyer
256 www.harvardreviewofpsychiatry.org Volume 21 •Number 5 •September/October 2013
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
carers of persons with other PDs is nonexistent. Since all PDs
are characterized by maladaptive interpersonal styles, it is
likely that carers of persons with other PDs (such as
antisocial, histrionic, or narcissistic PD) would experience
similar burdens, grief, and interpersonal challenges in their
supportive role. Further, the high comorbidity among the
DSM-IV PDs suggests that patients often suffer from more
than one PD.
6,48
Although these considerations suggest that
the findings of studies specific to carers of persons with
BPD could possibly be generalized to carers of persons with
PDs, future research may benefit by comparing the burden
and support needs of carers of persons with different PDs.
In the studies reviewed here, the carers of female
persons with BPD are overrepresented. Although clinical
samples have found a larger prevalence of females diag-
nosed with PDs in general,
48–50
epidemiological research
with community samples has indicated that PD diagnoses
(in particular, of BPD) are balanced across gender.
6,8
Thus,
whereas clinical services (and by the same token, the studies
presented here) may engage more female patients— perhaps
as a result of differences in PD manifestation, with females
presenting as internalized, and males as externalized, in
impulsivity and affective dysregulation
6,51
—carers in the
community may be supporting more evenly divided pop-
ulations of males and females with borderline or other
PDs. It is a challenge for the field to identify and include
males in future studies.
The present study is the first to systematically review
previous research and to present the empirical data on a
large, aggregated sample of carers of persons with BPD.
The findings indicate that carers of a person with BPD are
burdened (both objectively and subjectively), grieving, and
impaired in their sense of empowerment, and that they
may experience their own mental health problems. Im-
portantly, it appears that objective and subjective burden
and grief in the aggregated sample of carers of persons
with BPD may be more elevated compared to carers of
persons with other serious mental illnesses. The research
also suggests that support interventions may be beneficial
to carer well-being, though the small sample sizes and short
follow-up periods necessitate further research in order to
reach firm conclusions. The present findings are limited
due to five of the six included studies being specific to
carers of persons with BPD. Further research is needed on
other PD diagnoses, and the carers of male patients with
PDs need to be included. In the meantime, however, it is
clear that carers of persons with BPD are seriously bur-
dened. Developing effective means of support would obvi-
ously improve carer well-being and would also, most
likely, benefit the patients themselves.
Declaration of interest: The authors report no conflicts of
interest. The authors alone are responsible for the content
and writing of the article.
REFERENCES
1. Hoffman PD, Fruzzetti AE, Buteau E. Understanding and
engaging families: an education, skills and support program
for relatives impacted by borderline personality disorder. J
Ment Health 2007;16:69–82.
2. American Psychiatric Association. Diagnostic and statistical
manual of mental disorders. 4th ed., text rev. Washington, DC:
American Psychiatric Press, 2000.
3. Hoffman PD, Fruzzetti AE. Advances in interventions for
families with a relative with a personality disorder diagnosis.
Curr Psychiatry Rep 2007;9:68–73.
4. Lefley H. From family trauma to family support system.
In: Gunderson JG, Hoffman PD, eds. Understanding and
treating borderline personality disorder: a guide for profes-
sionals and families. Arlington, VA: American Psychiatric
Publishing, 2005.
5. Coid J, Yang M, Tyrer P, Roberts A, Ullrich S. Prevalence and
correlates of personality disorder in Great Britain. Br J
Psychiatry 2006;188:423–31.
6. Grant B, Chou S, Goldstein R, et al. Prevalence, correlates,
disability, and comorbidity of DSM-IV borderline personality
disorder: results from the Wave 2 National Epidemiologic
Survey on Alcohol and Related Conditions. J Clin Psychiatry
2008;69:533–45.
7. Grant B, Hasin D, Stinson F, et al. Prevalence, corre-
lates, and disability of personality disorders in the United
States: results from the National Epidemiologic Survey on
Alcohol and Related Conditions. J Clin Psychiatry 2004;
65:948–58.
8. Lenzenweger MF. Epidemiology of personality disorders.
Psychiatr Clin North Am 2008;31:395–403.
9. Masterson J, Rinsley D. The borderline syndrome: the role
of the mother in the genesis and psychic structure of the
borderline personality. Int J Psychoanal 1975;56:163–77.
10. Herman JL, Perry JC, Van der Kolk BA. Childhood trauma
in borderline personality disorder. Am J Psychiatry 1989;
146:490–5.
11. Weaver TL, Clum GA. Early family environments and trau-
matic experiences associated with borderline personality dis-
order. J Consult Clin Psychol 1993;61:1068–75.
12. Gunderson J. Family interventions and therapies. In: Bor-
derline personality disorder: a clinical guide. Arlington, VA:
American Psychiatric Publishing, 2008.
13. Gunderson J, Berkowitz C, Ruiz-Sancho A. Families of border-
line patients: a psychoeducational approach. Bull Menninger
Clin 1997;61:446–57.
14. Cuijpers P. The effects of family interventions on relatives’
burden: a meta-analysis. J Ment Health 1999;8:275–85.
15. McFarlane WR. Lukens E, Link B, et al. Multiple-family
groups and psychoeducation in the treatment of schizophrenia.
Arch Gen Psychiatry 1995;52:679–87.
16. Goldstein MJ, Miklowitz DJ. The effectiveness of psycho-
educational family therapy in the treatment of schizophrenic
disorders. J Marital Fam Ther 1995;21:361–76.
17. Davis R. Toward a complete biopsychosocial model of per-
sonality disorders. Transcult Psychiatry 1997;34:462–72.
18. Paris J. Personality disorders: a biopsychosocial model. J Pers
Disord 1993;7:255–64.
19. Paris J. The etiology of borderline personality disorder: a
biopsychosocial approach. Psychiatry 1994;57:316–25.
20. Leichsenring F, Leibing E, Kruse J, New A, Leweke F.
Borderline personality disorder. Lancet 2011;377:74–84.
21. Zanarini MC, Yong L, Frankenburg FR, et al. Severity of
reported childhood sexual abuse and its relationship to
severity of borderline psychopathology and psychosocial
Carers of Persons with Borderline Personality Disorder
Harvard Review of Psychiatry www.harvardreviewofpsychiatry.org 257
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
impairment among borderline inpatients. J Nerv Ment Dis
2002;190:381–7.
22. Macfie J. Development in children and adolescents whose
mothers have borderline personality disorder. Child Dev
Perspect 2009;3:66–71.
23. Fossati A, Madeddu F, Maffei C. Borderline personality disor-
der and childhood sexual abuse: a meta-analytic study. J Pers
Disord 1999;13:268–80.
24. Paris J. The nature of borderline personality disorder: multi-
ple dimensions, multiple symptoms, but one category. J Pers
Disord 2007;21:457–73.
25. Paris J. Childhood trauma as an etiological factor in the
personality disorders. J Pers Disord 1997;11:34–49.
26. Liberati A, Altman DG, Tetzlaff J, et al.The PRISMA state-
ment for reporting systematic reviews and meta-analyses of
studies that evaluate health care interventions: explanation
and elaboration. PLoS Med 2009;6:e1000100.
27. Sutton A, Abrams K, Jones D, Sheldon T, Song F. Systematic
reviews of trials and other studies. Health Technol Assess
1998; 2;1–272.
28. Sanders S, Pearce S. The Oxford Friends and Family Em-
powerment (OFAFE) service: support and education for
those affected by friends or family with personality disorder.
Ment Health Rev J 2010;15:58–62.
29. Hoffman PD, Fruzzetti AE, Buteau E, et al. Family connec-
tions: a program for relatives of persons with borderline per-
sonality disorder. Fam Process 2005;44:217–25.
30. Falloon IR, Pederson J. Family management in the prevention
of morbidity of schizophrenia: the adjustment of the family
unit. Br Journal Psychiatry 1985;147:156–63.
31. Hogarty GE, Anderson CM, Reiss DJ, et al. Family psycho-
education, social skills training, and maintenance chemother-
apy in the aftercare treatment of schizophrenia. Arch Gen
Psychiatry 1991;48:340–7.
32. Tarrier N, Barrowclough C, Vaughn C, et al. Community manage-
ment of schizophrenia. A two-year follow-up of a behavioural
intervention with families. Br J Psychiatry 1989;154:625–8.
33. Goodman M, Patil U, Triebwasser J, Hoffman P, Weinstein ZA,
New A. Parental burden associated with borderline personal-
ity disorder in female offspring. J Pers Disord 2011;25: 59–74.
34. Hoffman PD, Buteau E, Hooley JM, Fruzzetti AE, Bruce ML.
Family members’ knowledge about borderline personality disor-
der: correspondence with their levels of depression, burden, dis-
tress, and expressed emotion. Fam Process 2003;42:469–78.
35. Scheirs JGM, Bok S. Psychological distress in caretakers or
relatives of patients with borderline personality disorder. Int
J Soc Psychiatry 2007;53:195–203.
36. Reinhard SC, Gubman GD, Horwitz AV, Minsky S. Burden
assessment scale for families of the seriously mentally ill.
Eval Program Plann 1994;17:261–9.
37. Platt S. Measuring the burden of psychiatric illness on the
family: an evaluation of some rating scales. Psychol Med
1985;15:383–93.
38. Page A, Hooke G, O’Brien N, de Felice N. Assessment of dis-
tress and burden in Australian private psychiatric inpatients.
Australas Psychiatry 2006;14:285–90.
39. Struening EL, Stueve A, Vine P, Kreisman DE, Link BG,
Herman DB. Factors associated with grief and depressive
symptoms in caregivers of people with serious mental illness.
Res Community Ment Health 1995;8:91–124.
40. Koren PE, DeChillo N, Friesen BJ. Measuring empowermentin
families whose children have emotional disabilities: a brief
questionnaire. Rehabil Psychol 1992;37:305–21.
41. Dempsey I, Dunst CJ. Helpgiving styles and parent empower-
ment in families with a young child with a disability. J Intellect
Dev Disabil 2004;29:40–51.
42. Radloff LS. The CES-D scale: a self-report depression scale
for research in the general population. Appl Psychol Meas
1977;1:385–401.
43. Giffin J. Family experiences of borderline personality disor-
der. Aust N Z J Fam Ther 2008;29:133–8.
44. Ekdahl S, Idvall E, Samuelsson M, Perseius K-I. A life
tiptoeing: being a significant other to persons with border-
line personality disorder. Arch Psychiatr Nurs 2011;25:
e69–e76.
45. Stepp SD. Development of borderline personality disorder in
adolescence and young adulthood: introduction to the special
section. J Abnorm Child Psychol 2012;40:1–5.
46. Erikson E. Childhood and society. 2nd ed. New York:
Norton, 1963.
47. Goodman M, Hazlett EA, New A, Koenigsberg HW, Siever L.
Quieting the affective storm of borderline personality dis-
order. Am J Psychiatry 2009;166:522–8.
48. Zimmerman M, Rothschild L, Chelminski I. The prevalence
of DSM-IV personality disorders in psychiatric outpatients.
Am J Psychiatry 2005;162:1911–8.
49. Thomas AW. Invited essay: sex biases in the diagnosis of
personality disorders. J Pers Disord 1998;12:95–118.
50. Skodol AE, Bender DS. Why are women diagnosed borderline
more than men? Psychiatr Q 2003;74:349–60.
51. Johnson DM, Shea MT, Yen S, et al. Gender differences in
borderline personality disorder: findings from the collabora-
tive longitudinal personality disorders study. Compr Psychi-
atry 2003;44:284–92.
R. C. Bailey and B. F. S. Grenyer
258 www.harvardreviewofpsychiatry.org Volume 21 •Number 5 •September/October 2013
Copyright © 2013 President and Fellows of Harvard College. Unauthorized reproduction of this article is prohibited.
