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Burden and Support Needs of Carers of Persons with Borderline Personality Disorder: A Systematic Review

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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. The PRISMA systematic review method was followed, and empirical studies written in English, published between 1996 and 2011, and cited in major electronic databases were searched. Studies meeting the following selection 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. 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. 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 balance of patients, and that data be reported in a way to allow meta-analysis.
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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 signicant 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 ndings 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 rst to report data on a large, aggregated sample of carers of persons with personality
disorders. Signicant 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
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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
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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 identied for review.
R. C. Bailey and B. F. S. Grenyer
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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
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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 membersknowledge
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 memberssources 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
3032
HLM analysis indicated that
asignicant 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 ndings:
At pre-intervention, women
endorsed significantly higher
grief & subjective burden
Controlling for baseline scores, no
signicant gender differences
were identied 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
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Table 1
Continued
Source Design Aims Participants Findings Limitations
Scheirs & Bok
(2007)
35
Cross-sectional
survey
To investigate the
inuence 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
relationships 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 (1017
years old); no demographic
information was provided
specic 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 Checklist90; YFAFE, Young Friends and Family
Empowerment.
Carers of Persons with Borderline Personality Disorder
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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.
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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.
... Here, we examine caregivers' experiences and EE in first-episode psychosis (FEP) and BPD in young people; both SMI types typically emerge in adolescence and young adulthood (Chanen et al., 2017;Kessler et al., 2007) and both disorders have been noted to have significant consequences for caregivers (Betts et al., 2018;Cotton et al., 2013;Gleeson et al., 2020;Seigerman et al., 2020). In cohorts of people with enduring SMI, however, caregivers of individuals with BPD have been reported to experience greater levels of objective and subjective burden, poorer well-being and more grief than caregivers of individuals with other SMI such as schizophrenia (Bailey and Grenyer, 2013). We do not know whether this is true for caregivers of young people who have been newly diagnosed with FEP or BPD. ...
... The grief experienced by caregivers of individuals with BPD should be alleviated by effective engagement with services (Bailey and Grenyer, 2013). However, caregivers of individuals with BPD often experience reduced empowerment as a consequence of their interactions with mental health services, including inconsistent or conflicting guidance, limited provision of appropriate information, general lack of understanding of their situation, stigma, blame, and exclusion from treatment and discharge planning (Bailey and Grenyer, 2013;Hoffman et al., 2005). ...
... The grief experienced by caregivers of individuals with BPD should be alleviated by effective engagement with services (Bailey and Grenyer, 2013). However, caregivers of individuals with BPD often experience reduced empowerment as a consequence of their interactions with mental health services, including inconsistent or conflicting guidance, limited provision of appropriate information, general lack of understanding of their situation, stigma, blame, and exclusion from treatment and discharge planning (Bailey and Grenyer, 2013;Hoffman et al., 2005). Furthermore, two of the key failures in the prevention and early intervention field have included a failure of identification (i.e. ...
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Objective: Caregivers of individuals with severe mental illness often experience significant negative experiences of care, which can be associated with higher levels of expressed emotion. Expressed emotion is potentially a modifiable target early in the course of illness, which might improve outcomes for caregivers and patients. However, expressed emotion and caregiver experiences in the early stages of disorders might be moderated by the type of severe mental illness. The aim was to determine whether experiences of the caregiver role and expressed emotion differ in caregivers of young people with first-episode psychosis versus young people with 'first-presentation' borderline personality disorder features. Method: Secondary analysis of baseline (pre-treatment) data from three clinical trials focused on improving caregiver outcomes for young people with first-episode psychosis and young people with borderline personality disorder features was conducted (ACTRN12616000968471, ACTRN12616000304437, ACTRN12618000616279). Caregivers completed self-report measures of experiences of the caregiver role and expressed emotion. Multivariate generalised linear models and moderation analyses were used to determine group differences. Results: Data were available for 265 caregivers. Higher levels of negative experiences and expressed emotion, and stronger correlations between negative experiences and expressed emotion domains, were found in caregivers of young people with borderline personality disorder than first-episode psychosis. Caregiver group (borderline personality disorder, first-episode psychosis) moderated the relationship between expressed emotion and caregiver experiences in the domains of need to provide backup and positive personal experiences. Conclusion: Caregivers of young people with borderline personality disorder experience higher levels of negative experiences related to their role and expressed emotion compared with caregivers of young people with first-episode psychosis. The mechanisms underpinning associations between caregiver experiences and expressed emotion differ between these two caregiver groups, indicating that different supports are needed. For borderline personality disorder caregivers, emotional over-involvement is associated with both negative and positive experiences, so a more detailed understanding of the nature of emotional over-involvement for each relationship is required to guide action.
... The hallmark characteristics of BPD are fears of rejection and/or abandonment, lack of stability in interpersonal relationships, poor behavioral and impulse control, lack of emotion regulation, proneness to self-harm and suicidal behavior, and intense anger. These behaviors often make those with BPD challenging for families and providers alike (Bailey & Grenyer, 2013;Hoffman et al., 2005;Lawn & McMahon, 2015;Scheirs & Bok, 2007). ...
... A recent systematic review of the burden and support needs of families of persons with BPD found these families "experience[d] elevated objective and subjective burden, grief, impaired empowerment" compared with those with other mental health disorders. In addition, they frequently suffer from a diversity of mental health conditions themselves, such as anxiety and depression (Bailey & Grenyer, 2013). Family members not only encounter health and mental health challenges, but also incur substantial financial costs and marital strain, often living in permanent crises, chaos, and social isolation (Goodman et al., 2011). ...
... Family intervention is currently seen as an important ingredient in the treatment and recovery of persons with BPD, BD, MDD, and their caregivers (Bailey & Grenyer, 2013;Hoffman et al., 2004;Luciano et al., 2011;Miklowitz et al., 2009). For example, parents of adolescents with BPD who are receiving dialectical behavior therapy (DBT) are expected to participate in DBT skills training along with their adolescent children (Rathus & Miller, 2015). ...
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There are a variety of educational interventions for families who have a relative with a mental health disorder. However, for those with one or more emotion dysregulation disorders, there are limited options. This article reports on the results of a pilot project using a quasi-experimental design with a sample of 270 (intervention = 217, control = 53) to assess an intervention, Getting Off the Emotional Roller Coaster Skill-Building Family Education Course (GOER Family Course), for families coping with and managing emotion regulation disorders in a loved one which are often misdiagnosed or co-occurring. This intervention was effective in reducing caregiver burden [F(1, 120) = 12.25, p = 0.001], while improving attitudes, knowledge, and skills [F(1, 170) = 6.16, p = 0.014]. It fills an important gap in available resources for families faced with challenges and responsibilities that these disorders can present, especially when inaccurately diagnosed or receiving ineffective treatment. While there is a need for further research and adaptation to virtual learning, the preliminary results show positive effects.
... The challenges experienced by a carer of someone who has a diagnosis of BPD are well documented (Bailey & Grenyer, 2013;Giffin, 2008;Kay, Poggenpoel, Myburgh, & Downing, 2018;Meshkinyazd, Heydari, & Bordbar, 2020). In this study we have used the term 'carer' to refer to people who support someone with BPD in a voluntary capacity. ...
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Background Since the deinstitutionalisation movement, many families have taken on the responsibility of caring for their family members with severe mental illness (SMI). Despite being recognised as a fundamental resource, family caregivers frequently report that the support they are receiving from mental health services is inadequate. Aim To explore the lived experiences of receiving a Family Recovery Peer Support (FRPS) pilot intervention for family caregivers of individuals with SMI. Method The experiences of receiving FRPS, a 6-session intervention, were explored through 12 in-depth, semi-structured interviews with family members. Findings Using interpretative phenomenological analysis, two superordinate themes were identified as follows: 1) ‘You feel all their pain’ and 2) ‘A vital experience of growth and healing through relationship’. Findings revealed that having a family member suffer from SMI was a traumatic experience. All 12 interviewees reported that receiving FRPS was beneficial. The significance of genuine understanding in the context of experiential similarity was repeatedly identified as invaluable. Analyses revealed a sequential journey of recovery, and post-traumatic growth, across family members’ narratives, which led to improved relationships. Conclusion Having a family member suffer from severe mental illness was a traumatic experience. Findings from the present study support the roll-out of FRPS as an effective intervention for family caregivers of individuals with SMI. In order to develop more effective Mental Health Services, future policy initiatives should take family caregivers’ views and experiences into account.
... Empowerment experienced by family members of patients Table 2 Socio-demographic characteristics of persons diagnosed with personality disorders in the two implementation conditions of the intervention. V. Guillén et al. with PD is severely impaired, ranking significantly below other groups of family members (Bailey and Grenyer, 2013). They attribute this deficiency to the absence of skills that would help them to control the circumstances of their lives, even though they would like to be able to rely on their skills to appropriately care for the patients (Kay et al., 2018). ...
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Introduction Personality disorders (PD) have a serious impact on the lives of individuals who suffer from them and those around them. It is common for family members to experience high levels of burden, anxiety, and depression, and deterioration in their quality of life. It is curious that few interventions have been developed for family members of people with PD. However, Family Connections (FC) (Hoffman and Fruzzetti, 2005) is the most empirically supported intervention for family members of people with Borderline Personality Disorder (BPD). Aim The aim of this study is to explore the effectiveness of online vs face-to-face FC. Given the current social constraints resulting from SARS-CoV-2, interventions have been delivered online and modified. Method This was a non-randomized pilot study with a pre-post evaluation and two conditions: The sample consisted of 45 family members distributed in two conditions: FC face-to-face (20) performed by groups before the pandemic, and FC online (25), performed by groups during the pandemic. All participants completed the evaluation protocol before and after the intervention. Results There is a statistically significant improvement in levels of burden (η 2 = 0.471), depression, anxiety, and stress (η 2 = 0.279), family empowerment (η 2 = 0.243), family functioning (η 2 = 0.345), and quality of life (μ2 η 2 = 0.237). There were no differences based on the application format burden (η 2 = 0.134); depression, anxiety, and stress (η 2 = 0.087); family empowerment (η 2 = 0,27), family functioning (η 2 = 0.219); and quality of life (η 2 = 0.006), respectively). Conclusions This study provides relevant data about the possibility of implementing an intervention in a sample of family members of people with PD in an online format without losing its effectiveness. During the pandemic, and despite the initial reluctance of family members and the therapists to carry out the interventions online, this work shows the effectiveness of the results and the satisfaction of the family members. These results are particularly relevant in a pandemic context, where there was no possibility of providing help in other ways. All of this represents a great step forward in terms of providing psychological treatment.
... Borderline personality disorder (BPD) ranges among the most severe mental health problems: It is associated with a lifetime suicide rate of 8% to 10% (Leichsenring et al., 2011), poor psychosocial functioning (Álvarez-Tomás et al., 2019;Gunderson et al., 2011;Winograd et al., 2008), premature retirement (Baer et al., 2016), and poor physical health (Schneider et al., 2019). Without appropriate treatment, BPD is associated with severe suffering of both the patient and the social surrounding (Bailey & Grenyer, 2013) but also with enormous societal costs (Van Asselt et al., 2007). Although there was (and still is) strong reluctance to diagnose BPD before the age of 18, evidence for the validity of BPD in young people is unambiguous (Chanen et al., 2017;Fonagy et al., 2015;Kaess et al., 2014). ...
Article
Borderline personality disorder (BPD) is among the most severe mental health problems with long-lasting deterioration of functioning. According to a Cochrane review, evidence for methods focused on treatment for adolescent BPD patients is very limited. Aims of the study were to demonstrate the noninferiority of adolescent identity treatment (AIT) compared with dialectical behavior therapy for adolescents (DBT-A), and that intensive early treatment of BPD leads to significant improvement of psychosocial and personality functioning in adolescent patients. In a nonrandomized controlled trial using a noninferiority approach, we compared 37 patients treated with DBT-A with 23 patients treated with AIT. Both treatments included 25 weekly individual psychotherapy sessions and five to eight family sessions. Patients were assessed at four timepoints: baseline, posttreatment, 1- and 2-year follow-up. Primary outcome was psychosocial functioning at 1-year follow-up. We performed both intention-to-treat analyses and per-protocol analyses (completers). Baseline characteristics of both groups were not significantly different except for age and self-injurious behavior. In all, six AIT patients (26%) and 10 DBT-A patients (27%) dropped out of treatment. Both DBT-A and AIT significantly improved adolescents' psychosocial functioning (AIT: d = 1.82; DBT-A: d = 1.73) and personality functioning. BPD criteria and depression were significantly reduced by both treatments. Overall, AIT was found to be not inferior to DBT-A and even more efficient in reducing BPD criteria. Both treatments are highly effective in improving psychosocial functioning and personality functioning in adolescent BPD patients. AIT is a promising approach and not inferior to DBT-A in respect to treatment efficiency. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
... BPD is known to cause significant distress because it significantly burdens patients and their families. [14] Learning about the relationship of parenting styles with BPD symptoms would help in better tailoring of interventions for the patients and their families. This paper is an attempt in the form of a pilot study (part of doctoral research) to address the above-mentioned gap in the literature. ...
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Background: Personality disorders (PDs) are often influenced by early circumstances such as parenting. Parenting remains a subjective experience which has not been well studied in the context of PDs from the perspectives of parents and their children. Aims: This study examined the parenting styles in the form of perceived parenting in youth with borderline PD (BPD) and parenting experiences of their parents. Settings and Design: We employed a mixed‑methods cross‑sectional study design to assess youth aged between 16 and 24 years diagnosed with BPD and their parents, who sought treatment at a tertiary care psychiatric hospital. Methods: Youth (n = 5) and their parents (n = 8) were assessed on the Structured Clinical Interview for DSM 5 for PD, MINI International Neuropsychiatric Interview 7.0.2, and the Parenting Styles and Dimensions Questionnaire – Short Form. Two youth and two parents from the primary sample were selected for a semi‑structured interview on parenting. Statistical Analysis: Parenting style scores were analyzed through descriptive statistics. Thematic analysis was used to interpret the interview data. Results: Youth with BPD perceived parenting as authoritarian and scored their parents lowest on the autonomy‑granting dimension of authoritative parenting style. Verbal hostility was scored highest for parents. Parents of youth with BPD perceived their parenting style as authoritative, viewing themselves as warm and supportive. In the interviews, youth reported high criticality; they expressed dissatisfaction with parenting styles and need for support. The parents reported the negative influence of marital discord on parenting styles, and the need for open communication. Conclusions: Parenting styles are perceived differently by youth with BPD and their parents. Presence of psychopathology and individual personality traits of both youth and parents seem to play an important role in determining parenting,which needs further exploration. Keywords: Borderline personality disorder, parenting styles, perceived parenting, youth
... BPD is known to cause significant distress because it significantly burdens patients and their families. [14] Learning about the relationship of parenting styles with BPD symptoms would help in better tailoring of interventions for the patients and their families. This paper is an attempt in the form of a pilot study (part of doctoral research) to address the above-mentioned gap in the literature. ...
Article
Background: Personality disorders (PDs) are often influenced by early circumstances such as parenting. Parenting remains a subjective experience which has not been well studied in the context of PDs from the perspectives of parents and their children. Aims: This study examined the parenting styles in the form of perceived parenting in youth with borderline PD (BPD) and parenting experiences of their parents. Settings and Design: We employed a mixed-methods cross-sectional study design to assess youth aged between 16 and 24 years diagnosed with BPD and their parents, who sought treatment at a tertiary care psychiatric hospital. Methods: Youth (n = 5) and their parents (n = 8) were assessed on the Structured Clinical Interview for DSM 5 for PD, MINI International Neuropsychiatric Interview 7.0.2, and the Parenting Styles and Dimensions Questionnaire – Short Form. Two youth and two parents from the primary sample were selected for a semi-structured interview on parenting. Statistical Analysis: Parenting style scores were analyzed through descriptive statistics. Thematic analysis was used to interpret the interview data. Results: Youth with BPD perceived parenting as authoritarian and scored their parents lowest on the autonomy-granting dimension of authoritative parenting style. Verbal hostility was scored highest for parents. Parents of youth with BPD perceived their parenting style as authoritative, viewing themselves as warm and supportive. In the interviews, youth reported high criticality; they expressed dissatisfaction with parenting styles and need for support. The parents reported the negative influence of marital discord on parenting styles, and the need for open communication. Conclusions: Parenting styles are perceived differently by youth with BPD and their parents. Presence of psychopathology and individual personality traits of both youth and parents seem to play an important role in determining parenting,which needs further exploration.
... The relationships of adolescents and young adults with both threshold and subthreshold BPD can be challenged. Relatives, partners and friends of adults with BPD report considerable elevated objective and subjective burden and mental health problems, including depression and anxiety [14]. Similarly, families and friends of young people with BPD features report elevated levels of distress, negative caregiving experiences, and family environments high in expressed emotion, such as criticism and emotional overinvolvement, also when compared to adults in the general population or families and friends of young people with other serious illnesses [15]. ...
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Background Impaired interpersonal functioning has been highlighted as a core feature of borderline personality disorder (BPD). Adolescence and young adulthood form important developmental stages within both the emergence of BPD and the development of interpersonal functioning, which takes place mostly in relationships with parents and friends. This study aimed to: (i) investigate relations between BPD symptoms and both supportive and negative interactions with mothers and best friends; (ii) investigate whether the relations were moderated by age; (iii) test the robustness of our findings by comparing the results based on self-reports with results from a subsample in which supportive and negative interactions with mothers were rated by the mother. Methods 312 young people referred to mental healthcare completed self-report measures on BPD and supportive and negative interactions. Multiple regression analyses were conducted to examine the relations between BPD features and perceived supportive and negative interactions with mothers and a best friend, and to investigate whether these relations were moderated by age. Robustness of our findings was studied in a subsample (n = 104), by using a multi-informant design in maternal report on supportive and negative interactions with mothers. Results Multiple regression analyses demonstrated that negative interactions with mothers as well as with a best friend were related to more BPD symptoms in young people. Supportive interactions were not related to BPD symptoms. Both BPD and quality of relations were not related to age. In a subsample in which supportive and negative interactions with mothers were rated by the mother, the maternal report showed slightly different results. In this model, both supportive and negative interactions with a best friend were positively related, whereas interactions with mothers were not related to BPD symptoms in young people. Conclusions Results highlight the importance of relationships with mothers and a best friend during adolescence and young adulthood. Given that BPD often emerges during this developmental phase, future research is needed to clarify how quality of relationships could alter pathways toward BPD in young people. Trial registration Not applicable.
... Neben depressiven Erkrankungen ist Stress, der durch ein Familienmitglied mit einer psychischen Erkrankung ausgelöst wird, auch mit Belastung, Trauer und sozialer Isolation verbunden (Hoffman, Fruzzetti & Buteau, 2007;Wilks et al., 2017;Grenyer, Bailey, Lewis, Mathias & Bickerton, 2018). Die von den Familien mit einem BPS-Betroffenen erlebte Belastung ist sowohl im Vergleich zur Allgemeinbevölkerung als auch im Vergleich zu Angehörigen anderer psychischer Erkrankungen signifikant höher ausgeprägt (Scheirs & Bok, 2007, Bailey & Grenyer, 2013, Kirtley, Chiocchi, Cole, & Sampson, 2018. Kirtley et al. (2018) nennen u. a. als mögliche Gründe eine mangelnde emotionale Abgrenzung der Angehörigen, starke Emotionen der BPS-Betroffenen, Stigmatisierung der BPS und Kritik bezüglich BPS-typischen Verhaltens im familiären Umfeld. ...
Article
Zusammenfassung. Hintergrund. Familiäre Konflikte und dysfunktionale Verhaltensweisen spielen eine entscheidende Rolle bei der Entstehung und Aufrechterthaltung von Borderline-Persönlichkeitsstörungen (BPS). Auf der Grundlage der Dialektisch-Behavioralen Therapie (DBT) berücksichtigte Alan Fruzzetti die genannten Faktoren in einem transaktionalen Entstehungmodell. Um BPS-Betroffenen und deren Angehörigen Strategien für eine funktionalere Emotions- und Interaktionsbewältigung an die Hand zu geben, entwickelte Alan Fruzzetti DBT-Familien-Skills. Fragestellung. Die Wirksamkeit dieser Fertigkeiten als therapeutische Intervention im Rahmen eines Mehrfamiliensettings wurde im Rahmen der vorliegenden Pilotstudie evaluiert. Methode. Mittels Tagebuch- und Sitzungsabfragen wurden prozessuale Daten der psychischen Beanspruchung und Anwendungshäufigkeit von DBT-Familien-Skills (AFS) erhoben. Ergebnisse. Via Trendanalysen konnten Hinweise auf hypothesenkonforme Beanspruchungsreduktionen und eine Zunahme der AFS über den zeitlichen Gruppenverlauf bei BPS-Betroffenen und Angehörigen identifiziert werden. Schlussfolgerung. Die Ergebnisse der Pilotstudie liefern erste Hinweise, dass die in einem Mehrfamilienformat angebotenen DBT-Familien-Skills zu einer Reduktion der psychischen Beanspruchung der BPS-Betroffenen und Angehörigen beitragen.
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Systematic reviews and meta-analyses are essential to summarize evidence relating to efficacy and safety of health care interventions accurately and reliably. The clarity and transparency of these reports, however, is not optimal. Poor reporting of systematic reviews diminishes their value to clinicians, policy makers, and other users.Since the development of the QUOROM (QUality Of Reporting Of Meta-analysis) Statement--a reporting guideline published in 1999--there have been several conceptual, methodological, and practical advances regarding the conduct and reporting of systematic reviews and meta-analyses. Also, reviews of published systematic reviews have found that key information about these studies is often poorly reported. Realizing these issues, an international group that included experienced authors and methodologists developed PRISMA (Preferred Reporting Items for Systematic reviews and Meta-Analyses) as an evolution of the original QUOROM guideline for systematic reviews and meta-analyses of evaluations of health care interventions.The PRISMA Statement consists of a 27-item checklist and a four-phase flow diagram. The checklist includes items deemed essential for transparent reporting of a systematic review. In this Explanation and Elaboration document, we explain the meaning and rationale for each checklist item. For each item, we include an example of good reporting and, where possible, references to relevant empirical studies and methodological literature. The PRISMA Statement, this document, and the associated Web site (http://www.prisma-statement.org/) should be helpful resources to improve reporting of systematic reviews and meta-analyses.
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DSM-IV-TR states that borderline personality disorder (BPD) is “diagnosed predominantly (about 75%) in females.” A 3:1 female to male gender ratio is quite pronounced for a mental disorder and, consequently, has led to speculation about its cause and to some empirical research. The essential question is whether the higher rate of BPD observed in women is a result of a sampling or diagnostic bias, or is it a reflection of biological or sociocultural differences between women and men? Data to address these issues are reviewed. The differential gender prevalence of BPD in clinical settings appears to be largely a function of sampling bias. True prevalence by gender is unknown. The modest empirical support for diagnostic biases of various kinds would not account for a wide difference in prevalence between the genders. Biological and sociocultural factors provide potentially illuminating hypotheses, should the true prevalence of BPD differ by gender.
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The Oxford Friends and Family Empowerment (OFAFE) service is a carer support service that originated in a collaboration between the Oxfordshire Complex Needs Service and the national mental health charity Rethink. OFAFE provides support and education for adults supporting an individual with a personality disorder. This paper describes the background and operation of the OFAFE service, along with the early stages of the development of a similar service for young carers, the Young Friends and Family Empowerment (YFAFE) service.
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• We demonstrated earlier that a novel family psychoeducational approach and an individual social skills training approach designed for patients living in high—expressed emotion households each reduced schizophrenic relapse by one-half when compared with medication controls in the 1st year after hospital discharge. The combination of treatments resulted in no relapse. Results have now been obtained after 2 years of continuous treatment. By 24 months, a persistent and significant effect of family intervention on forestalling relapse was observed, but the effect of social skills training was lost late in the 2nd year. There was no additive effect on relapse that accrued to the combination of treatments. Beyond 2 years, however, the effect of family intervention was likely compromised as well. Treatment effects on the adjustment of survivors were circumscribed, due, in part, to study design characteristics. Effects generally favored the social skills-alone condition at 1 year and the family condition or combined family/social skills condition at 2 years.
Individuals with borderline personality disorder (BPD) struggle with unbearable emotions that arise out of interpersonal difficulties. Self-harm and suicidal behaviours serve to regulate these emotions and to gain a sense of well-being and control in a treatment context where hospital admissions are avoided by mental health services. Clinician engagement with families may be constrained by their knowing the accepted etiology of the disorder, which includes a causal link with the family environment. Other constraining factors include the negativity of those with BPD toward their family, and their clinicians' diagnostic uncertainty or confusion. This qualitative study explored the experience of families whose close relative with BPD has a long history of self-harm and/or suicide attempts. Family members were found to have chronic and traumatic stress. Family roles and relationships were strained, as were relationships between the family and the mental health system. The findings of this study indicate that treatment for BPD needs to adopt a systemic approach that considers individuals and their significant family relationships, as well as relationships between the family and treatment providers.