Personality and Mental Health

14: 263–283 (2020-08)

Published online 19 February 2020 in Wiley Online Library
(wileyonlinelibrary.com) DOI 10.1002/pmh.1478

Service users’ experiences of receiving a

diagnosis of borderline personality disorder:
A systematic review

R. LESTER1, L. PRESCOTT2, M. MCCORMACK1, M. SAMPSON1 AND NORTH WEST BOR-

OUGHS HEALTHCARE, NHS FOUNDATION TRUST, 1St Helens Recovery Team, Harry
Blackman House, Peasley Cross Hospital, St Helens, UK; 2Faculty of Health and Medicine, Lancas-
ter University, Lancaster, UK

ABSTRACT
There is ongoing controversy regarding the borderline personality disorder (BPD) diagnosis. Whilst the experi-
ences of people living with BPD have been widely acknowledged, the process of receiving the diagnosis is poorly
described. This systematic review aimed to synthesize the existing research exploring people’s experiences of re-
ceiving a diagnosis of BPD, as well as examining what is considered best practice in the diagnostic delivery pro-
cess. The findings from 12 qualitative studies were synthesized using thematic analysis, generating two
overarching themes: negative and positive experiences of receiving a diagnosis of BPD. These themes were de-
scribed using the following sub-themes: the communication of diagnosis and meaning made of it, validity around
diagnosis and attitudes of others. Results indicate that there is a substantial difference between a well-delivered
and poorly delivered diagnosis. The diagnostic delivery process is fundamental to how people understand and in-
terpret the BPD diagnosis. The way in which the BPD diagnosis is shared with people can ultimately shape their
views about hope for recovery and their subsequent engagement with services. © 2020 John Wiley & Sons, Ltd.

Introduction 28 percent of patients in psychiatric clinics or

Borderline personality disorder (BPD) is clini-
cally defined as ‘a pervasive pattern of instability
of interpersonal relationships, self-image, and af-
fects, and marked impulsivity that begins in early
adulthood and is present in a variety of contexts’
(p. 943).1 People who meet diagnostic criterion
for BPD are significant consumers of a wide
range of services, including accident and emer-
gency departments, community and specialist
mental health care, and inpatient services.2 Epi-
demiological research estimates between 15 to
hospitals meet the BPD diagnostic threshold,
with a prevalence of 1.7 percent in the general
population.3
Using diagnoses in the care of people with
mental health difficulties has generated great
controversy in recent years,4 particularly amongst
service users (SUs) and staff regarding the
diagnosis of BPD.5 The conceptual validity of
BPD has provoked debate amongst health
professionals6–8 and survivor activists,5 and the
consequences of the diagnosis have been widely
acknowledged.9–12

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Borderline personality disorder as a valid diagnosis? to work with and less amenable to nursing inter-
vention.20,21 These perceptions appeared to elicit
Some research exploring diagnosis validity has in-
more negative attitudes and significantly less em-
corporated SU perspectives, comparing the sub-
pathetic responses towards this client group.21–23
jective experiences of their difficulties to clinical
The characteristic ways that individuals with
descriptions. Such research has indicated that
BPD may behave during interpersonal transac-
the subjective experiences of those who have been
tions with health care professionals have been de-
given a BPD diagnosis differ significantly from the
scribed as emotionally blackmailing, threatening
clinical descriptions guiding professionals. For ex-
and rule-breaking,24 evoking heightened emo-
ample, Castillo13 found that 88 percent described
tional reactions25 and a perception that individ-
their difficulties in terms of anxiety and depres-
uals with the diagnosis are ‘bad’ rather than
sion, questioning why they had received a diagno-
‘mad’.10 A literature review of mental health
sis of personality disorder. Further research has
nurses’ attitudes towards BPD clients in acute
suggested that the emotional lives of people diag-
mental health settings identified that mental
nosed with BPD are characterized by feelings of es-
health nurses tended to distance themselves from
trangement, inadequacy, hopelessness and despair,
SU’s with BPD,23 again contributing to the stigma
with experiences of shame and self-stigma14,15 and
surrounding the diagnosis.
individuals being stereotyped16 or perceived as a
These themes were reinforced in research cap-
‘label’.13 A recent qualitative study found that a
turing the experiences of individuals with BPD re-
minority of individuals reported non-acceptance
garding their contact with health services, with
or disinterest in the diagnosis, instead preferring
many describing encounters of negative and un-
to relate to a bipolar diagnosis, which appeared
helpful reactions from professionals.12,26 Common
to be associated with their lack of understanding
themes pertaining to inconsistencies in care, lack
about BPD and others’ lack of interest in talking
of empathy, a lack of understanding of self-harm
to them about it.12 In contrast, a study by Dyson
behaviour9 and feelings of invalidation and pow-
and Brown17 discovered that individuals given
erlessness11 were highlighted. Some individuals
the label of BPD had seemingly internalized a
also voiced a perception that their behaviour was
medical view of themselves, appearing to inadver-
seen as manipulative.14
tently define themselves through their diagnosis.
In contrast, several studies have indicated
This may highlight a conflict for those individuals
that specialized educational and training
in relation to their perception as being ‘sick’ and
programmes about BPD can improve staff atti-
health professionals’ view that they are fundamen-
tudes towards the diagnosis, guide their clinical
tally ‘difficult’ to treat.18
practice and enhance confidence in working
with this SU group,27–30 thus improving caregiv-
Health professionals’ perceptions of individuals with
ing.31 Stacey et al.32 found that, following spe-
borderline personality disorder
cialized training, health care students displayed
A considerable body of research has explored a shift away from a focus on changing the per-
health professionals’ attitudes and approaches to- ceived difficult behaviour of a SU towards an
wards people with BPD, highlighting the stigma understanding of their own emotional responses
associated with the diagnosis.9,19 Findings indi- to their behaviours. A recent study suggested
cated that health professionals were less validating that differing staff perceptions of recovery in
of the subjective experiences of individuals with BPD can pose risks for consistent team working,
BPD in comparison to those who have other men- a particularly important issue in this SU group
tal health diagnoses.19 Many health professionals due to the relational difficulties associated with
viewed individuals with BPD to be more difficult the diagnosis.33

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 A diagnosis of borderline personality disorder 265

Carers and families’ perceptions and lived experiences constructive approach, often increases SUs posi-
of individuals with borderline personality disorder tive emotions (e.g. validation) and potentially
their hope for treatment. There was no indication
In addition to the previous texts, some studies
that the provision of diagnostic feedback would
have examined the perceptions and lived experi-
lead to an increase in SUs negative emotions
ences of carers and families of individuals with a
(such as shame and fear). A study exploring the
diagnosis of BPD,34–36 with several themes
process of diagnosing BPD highlighted how indi-
emerging, including dealing with multiple diag-
viduals were able to conceptualize their experi-
noses, searching for an explanation for the indi-
ences and emotional intensity, giving individuals
vidual’s behaviour, feelings of self-blame37,38 and
a sense of validation and relief.12 Some research
exclusion and discrimination when attempting
encountered experiences of health professionals
to interact with generalist health and mental
withholding the BPD diagnosis.13,16 This reflected
health services.39 Some studies highlighted that
the influence of staff attitudes and stigma on diag-
carers can experience feelings of being
nosis and also linked to the concept of treatment
overwhelmed and powerless to help the person
exclusion for those individuals. Similar reflections
because of their repeated self-harm or suicide at-
were shared by individuals who were initially
tempts.40,41 Bailey and Grenyer42 found that bur-
misdiagnosed in that this led to a delay in gaining
den and grief were significantly higher for carers
access to evidence-based treatment for BPD and
of individuals diagnosed with BPD than reported
progression in their recovery journey.12 A review
by carers of those with other mental health diag-
by Lequesne and Hersh44 found that there were
noses. Similar findings were noted by Kirtley
several influential barriers and facilitators to pro-
et al.,43 who reported higher levels of carer bur-
fessionals disclosing a diagnosis to the SU. Poten-
den, stigma, expressed emotion, emotional over-
tial barriers included the uncertainty regarding the
involvement, criticism and perceived threat of
validity of BPD as a diagnosis, concerns about the
strong emotions in carers of individuals with
impact of its associated stigma and the
BPD compared to carers of individuals with other
transference/counter-transference difficulties in
types of mental health difficulty. Giffin40 discov-
treating individuals with BPD. In contrast, facili-
ered that the broader family, as reported by par-
tators of diagnosis disclosure were found to be re-
ents of individuals with BPD, tended to have
lated to promoting SU autonomy, possibilities for
less tolerance for behaviours associated with the
collaboration with the SU towards more specific
diagnosis and seemed readier to express their ex-
and effective therapies, and the increasing avail-
pectations that they should take more responsi-
ability of diagnostic information available to
bility for their actions.
SU’s. In light of such findings, more recent re-
search has reflected that early diagnosis is
Rationale for review
preferable.45
Despite the ongoing controversy regarding BPD,5– The National Institute for Health and Care Ex-
8,13,17
there remains a paucity of empirical research cellence published some quality statements in
examining the process of diagnosing BPD, particu- 201546 that aimed to support the previous guide-
larly in relation to individuals’ subjective experi- line from 2009.47 One of these statements posited
ences. Exploring the effects of the diagnostic that the diagnosis for BPD should not be given un-
process more broadly, findings by Holm-Denoma less the individual has completed a standardized
et al.4 indicated that SUs are positively emotion- semi-structured interview. This statement
ally affected following diagnostic feedback provi- followed concerns that the process of diagnosis
sion. These results suggest that diagnostic per se was not being delivered in a systematic or
feedback, when delivered using a careful and clinically helpful way.

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266 R. Lester et al.
This guidance was echoed by the Project Air
Strategy for Personality Disorders, an integrative
relational step-down model of care which seeks
to enhance understanding of personality disorders,
treatment options and outcomes for people with a
PD diagnosis and their families and carers.48 The
strategy highlighted the importance of the diag-
nostic assessment process in assisting with making
an accurate diagnosis and engaging the SU in
treatment, whilst reducing their level of risk and
creating a sense of hope for the future. Project
Air Strategy has emphasized, in line with best
practice, that informing the SU of their diagnosis
can help them to feel validated, relieved and un-
derstood. The strategy goes further to say that this
transparency encourages the SU to play a more ac-
tive role in their recovery and identify and to rec-
ognize their symptoms as they occur. This was
echoed in recent findings which concluded that
the BPD diagnosis helps to foster individual moti-
vation, hope, engagement in relationships, activi-
ties and treatment, as part of a holistic recovery
approach.12
Aims of review
This systematic review aimed to synthesize current
findings and generate knowledge from qualitative
studies exploring individuals’ subjective experi-
ences of receiving a diagnosis of BPD. We were
particularly interested in gaining a greater insight
into individuals’ experiences of the delivery of
the diagnosis and their subsequent understanding
and interpretation of the diagnosis. We hope that
identifying such perspectives will stimulate further
research in this area and contribute to the en-
hancement of health service care and treatment
for individuals with BPD and their families.14
Methods
Search strategy
A computerized search was undertaken on the
three following electronic databases: PsycINFO,
CINAHL and Medline. The search terms used
© 2020 John Wiley & Sons, Ltd.
were [‘borderline personality disorder’ OR ‘bpd’
OR ‘emotionally unstable personality disorder’
OR ‘eupd’] AND [‘experiences’ OR ‘perceptions’
OR ‘attitudes’ OR ‘views’] AND [‘service users’
OR ‘patients’ OR ‘clients’] AND [‘diagnosis’].
Both title and abstract field searches were used
for each set of search terms. In order to make the
search as efficient as possible, the source type was
limited to academic journals, and the language
was limited to English due to the resource limita-
tions for translation. Additionally, as BPD first ap-
peared as an official psychiatric diagnosis in the
DSM-III, the earliest publication year was set to
1980. The complete references retained from all
three databases were transferred to EndNote. Du-
plicates were removed (see Figure 1 for the study
sorting and selection strategy according to pre-
ferred reporting items for systematic reviews and
meta-analyses).
Selection criteria
Using EndNote, all titles and abstracts were man-
ually reviewed by two researchers independently
(R. L. and L. P.). Relevant papers were also
screened for further articles not detected through
database searching which identified three addi-
tional papers. These studies were not identified
during database searches due to the specific search
terms used being absent within the title or abstract
of the study. Whilst the search terms ‘service
users’, ‘clients’, ‘patients’ and ‘diagnosis’ were
added to the list of search terms due to the exten-
sive number of unrelated studies being identified,
this inevitably led to some relevant studies being
missed from the search. Initial screening of articles
based on titles and abstracts only excluded the ma-
jority of articles which were not from SUs’ per-
spectives. Studies that used a quantitative only
methodology were also excluded as the aim of this
research was to access a richer, more in-depth un-
derstanding about SUs’ authentic perspectives of
the diagnostic process. As the diagnostic process
can elicit a multitude of experiences and emo-
tional reactions for a person, it was felt that
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Figure 1: Preferred reporting items for systematic reviews and meta-analyses diagram for literature search demonstrating stages
of study screening
quantitative measurement would not capture
these experiences adequately.
When a reference satisfied all inclusion criteria
and met no exclusion criteria, it was sorted in the
‘to be included’ group. However, when a reference
met at least one exclusion criterion or failed to
meet at least one inclusion criterion, it was sorted
in the group of the appropriate exclusion
criterion/lacking inclusion criterion. When study
selection was completed, the first author then
compared her article sorting to each of her re-
search teams’. Any discrepancies between selec-
tions were discussed and resolved.
© 2020 John Wiley & Sons, Ltd.
A diagnosis of borderline personality disorder 267
Inclusion and exclusion criteria
There were three inclusion criteria used for study
selection in line with the aims of the current re-
view. The first criterion was that the data col-
lected in the study was from the SU perspectives
as opposed to staff, professional or familial perspec-
tives. The second criterion was that the article
presented data pertaining to the SU experience
of receiving a diagnosis of BPD. This excluded a
number of studies which presented SU views on
other aspects of BPD, such as living with BPD
and ‘recovery’ from BPD. However, studies were
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268 R. Lester et al.
not excluded solely on their aims being to explore
another aspect of BPD but if the experience of re-
ceiving a diagnosis was not presented within the
results. Several studies included in the review ex-
plored other aspects of BPD but presented SU per-
spectives on diagnosis within the content. The
final inclusion criterion applied was that the SU
participants recruited within the studies must have
had a diagnosis of PD already; several studies were
excluded which were based on individuals who
were ‘at risk of’ being diagnosed with BPD but
not actually diagnosed.
Data extraction
Data pertaining to the participant’s views and ex-
periences particularly around the BPD diagnostic
process were extracted from the studies. Where ap-
propriate, relevant quotes were extracted from the
studies and used to supplement the findings across
studies within the results.
Synthesis strategy
Thematic analysis was used as a qualitative meth-
odology to synthesize the data extracted from the
articles. This method provides a flexible approach
which uncovers a rich and detailed account of
qualitative data.
An inductive or ‘bottom up’ approach was uti-
lized during analysis, coding the text without
predetermined ideas of what the themes would
be. This approach also helped to minimize the in-
fluence of the researcher’s preconceptions as the
themes were developed directly from the data.
The researcher followed the process outlined in
Braun and Clarke.49 Step one involves familiariza-
tion with data which is usually fulfilled through
manual transcription of qualitative data. However,
as this was a review of pre-collected data, familiar-
ization with the data was completed by two re-
searchers (R. L. and L. P.) reading through all
included articles before step two was initiated.
Step two involved the generation of initial codes
through the line-by-line highlighting of relevant
text within each article. This was completed
© 2020 John Wiley & Sons, Ltd.
manually by R. L. and L. P. separately. Once ini-
tial coding was completed for all articles, R. L.
and L. P. reviewed all codes and categorized them
whilst searching for themes. The third member of
the research team (M. S.) supported the reviewing
of initial themes as per step four of the thematic
analysis process.49 Following feedback, themes
were refined and named to complete the final steps
of thematic analysis.
Rationale for qualitative synthesis approach
Given the great heterogeneity and complexity of
SU experiences of receiving a diagnosis of BPD,
a qualitative synthesis approach was preferred to
a meta-analysis for our systematic review. For ex-
ample, it is possible to agree with a diagnosis, yet
to encounter a negative experience of diagnosis
delivery, which may shape perceptions of self and
subsequently going on to live with that diagnosis.
It is common for people to experience conflicting
emotions at times, which is particularly relevant
for those seeking support from mental health ser-
vices.50–52 Therefore, minimizing their experi-
ences into quantitative data may not provide an
accurate reflection and insight into how best to as-
sess and deliver diagnoses effectively. This review
aimed to create value and meaning in SUs’ experi-
ences through the synthesis of the complex under-
lying original studies, emphasizing the rich, in-
depth nature of qualitative data. It aimed to create
structured, transparent judgements grounded in
the contextualized expertise of the authors. This
collective understanding drawn from multiple
studies allowed us to outline a more complex and
nuanced picture of SU experiences of receiving a
BPD diagnosis and to highlight helpful and un-
helpful practices.
Validity/quality and researcher reflexivity
As three of the researchers (a Consultant Clinical
Psychologist, Clinical Psychologist and Assistant
Psychologist) were currently working within a ser-
vice providing diagnostic assessments to individ-
uals with personality difficulties, it was likely that
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preconceptions of how individuals had experi-
enced the diagnostic processes were brought to
the research. The involvement of an external re-
viewer (a trainee clinical psychologist on a 6-
month placement) and therefore access to aca-
demic and clinical supervision both within and
external to the service ensured that the researchers
remained receptive to other narratives. Although
this may have strengthened the rigour of this re-
view to an extent, it must be acknowledged that
unconscious bias amongst the more influential
members of the research team may have remained.
As echoed earlier, the team approach to synthesis,
whereby judgements were made using the assess-
ment of three reviewers, further adds to the quality
and validity of this review’s findings.
An awareness of the service’s hopes to redesign
the diagnostic process was an important consider-
ation for researcher reflexivity for all reviewers,
again minimized through the involvement of an
external reviewer and use of supervision
throughout.
Results
Table A1 provides a summary of the studies in-
cluded for review. The aims, study design, type of
analysis, participant information and main find-
ings are presented.
Summary of studies
All of the studies included in the review (N = 12)
were published between 1999 and 2017. Across
the studies included, 172 individuals diagnosed
with BPD were included. Of the 172 individuals
definitively diagnosed with BPD, 129 were female
and 43 were male.
Eleven of the studies collected data using semi-
structured interviews, and one study used an un-
structured interview approach. With regard to
methodology, six of the studies used an interpreta-
tive approach, predominantly interpretative phe-
nomenological analysis, two studies used
© 2020 John Wiley & Sons, Ltd.
A diagnosis of borderline personality disorder 269
grounded theory, three studies used thematic anal-
ysis and one study used critical discourse analysis.
Narrative synthesis
On review of the studies, two overarching themes
pertaining to the participants’ experience of being
diagnosed with BPD were identified: negative and
positive experiences of receiving a diagnosis of
BPD. These themes were described using the fol-
lowing sub-themes: the communication of diagno-
sis and meaning made of it, validity around
diagnosis and attitudes of others.
Negative experiences of receiving a diagnosis of bor-
derline personality disorder
The communication of diagnosis and meaning made of
it. It was concerning to find that at least six par-
ticipants across five different studies reported that
they were unaware of their diagnosis until being
recruited to the original studies,53–56 and others
discovered their diagnosis by accident.55,57 One
participant in Richardson and Tracy’s study58
stated:
It also makes me angry, not because I have got BPD,
but angry because I have been seen by MH profes-
sionals over the years and no bugger has mentioned
anything about this. (p. 110)58
Many participants described a reluctance of
mental health professions to give them the diag-
nosis, and perhaps this reluctance explains why a
number of participants were never actually in-
formed of their diagnosis.
In nine of the studies, participants reported
that they did not know very much about what
the diagnosis meant and that they were given little
(if any) information about it when they were diag-
nosed. For example, Fromene and Guerin54 in-
cluded the participant quote:
I didn’t really know anything about it. She only really
gave me this silly little pamphlet to read … I would
have like a lot more information, especially some-
thing not written on the fucking paper. She just gave
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270 R. Lester et al.
it to me and said ‘you have got borderline personality
disorder’. And I said ‘okay what is that?’ and she said
‘Ah, well, that is what you have got’. (p. 575)54
Often this lack of information about BPD and
the way in which the diagnosis is delivered led to
participants feeling confused, angry and dismissed,
with several participants describing a ‘struggle’ for
more information and that this could result in
them being further labelled as ‘challenging’.59
Based on the information they were provided
with at diagnosis, a number of participants felt
that the diagnosis did not explain or clarify their
difficulties and instead they understood the diag-
nosis as suggesting that they were ‘bad’, ‘wrong’
or child-like.53,55,57,60,61 This is demonstrated in
the participant quote:
being diagnosed was such a shock, such a fucking slap
in the face. It really was an insult actually. The psy-
chiatrist invested no time in me whatsoever, and it
was just like I was a naughty, dirty person … it was
like I should be ashamed of myself … it was like being
marked out differently. (p. 11)61
Validity around diagnosis. Broader issues related
to the diagnosis of BPD were discussed by partici-
pants within several studies, particularly in rela-
tion to the controversy surrounding the validity
of the personality disorder diagnosis and also about
the social stigma attached to it. Twenty two per-
cent of participants in Ramon, Castillo and
Morant’s study53 stated that BPD was a label you
got when ‘they don’t know what else to do’. Other
studies report that participants viewed the BPD di-
agnosis as a ‘wastebasket’ or ‘dustbin’ label and
given as an ‘easy option for “we can’t do anything
for you” ’.59,62 One participant’s quote summarized
this viewpoint well:
it was more of a case, it was, you have to be
categorised, you have to be put in a box in some
way … we cannot do much for you but we need to la-
bel you. (p. 262)59
Some participants in Morris, Smith and
Alwin’s study63 reported how diagnosis arose as a
© 2020 John Wiley & Sons, Ltd.
result of them experiencing some change in their
care, which meant that they came in to contact
with new services or staff. One participant’s quote
conveyed this perception:
it was when I was changing psychiatrist … and the
psychiatrist said ‘oh you’re not psychotic, you’re not
this, you’re not that’, and he sort of plucked it
from air basically. ‘oh borderline personality disorder’.
(p. 252)63
Attitudes of others. Participants talked about the
meaning of the diagnosis being one of rejection
and exclusion, explaining that the diagnosis led
to either withdrawal of services or dismissive atti-
tudes towards them55,58,59. The following quote
represents this experience of exclusion whilst also
demonstrating the uncertainty of BPD as a valid
disorder of mental health:
They wouldn’t let me into hospital and even if they
did they couldn’t section me because I am not classed
as mentally ill. So it’s not really helpful because at
times when I am really stressed out and really ill, I re-
ally could do with being in hospital but that avenue
has been totally shut down to me. (p. 365)55
Another common theme identified within the
studies reviewed included one of hope for the fu-
ture. A number of participants explained that
the diagnosis gave them no hope as professionals
told them that BPD was untreatable and that
there was nothing that could be done for
them53,58,63. One participant felt that the diagno-
sis meant that professionals had given up on her,
and another described the diagnosis as the ‘killing
of hope’59.
Positive experiences of receiving a diagnosis of border-
line personality disorder
The communication of diagnosis and meaning
made of it
Positive experiences of diagnosis communication
were reported in seven of the studies reviewed,
and these often related to diagnosis providing
them with a clearer understanding of themselves,
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helping them to make sense of their difficulties,
connecting with other people and becoming an
integral part of their identity54,56–59,61,63. Lovell
and Hardy64 quote one participant’s positive expe-
rience of diagnosis:
It explained a lot of things and I felt an enormous
sense of relief that there was an explanation for the
way I was. (p. 233)64.
This is supported by Richardson and Tracy’s
study58 in which eight participants reported that
when time and care were taken to explain the di-
agnosis in the context of the person’s life, it was
received much more positively and described as
‘a relief’. Two of these participants felt strongly
that appropriate discussion with SUs was a critical
element of providing the diagnosis for
professionals.
A participant within Horn, Johnstone and
Brooke’s study59 described diagnosis as providing
hope and a ‘light at the end of the tunnel’.
Validity around diagnosis
A number of participants in Lovell and Hardy’s
study64 viewed BPD as part of their identity and
that the diagnosis explained their experiences
and behaviour. One participant highlighted this
perception in the following quote:
It is good to put a name on some things, because I
knew there was something wrong, there must be a rea-
son as to why I am like I am. (p. 233)64
Some participants expressed almost a sense of
gratitude towards the diagnosis for making sense
of them:
It explained a lot of things and I felt an enormous
sense of relief that there was an explanation for the
way I was. (p. 233)64
Attitudes of others
Participants shared how positive attitudes from cli-
nicians towards their diagnosis and associated dif-
ficulties during the diagnostic delivery process
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A diagnosis of borderline personality disorder 271
promoted hope and optimism for recovery. One
participant in Morris, Smith and Alwin’s study63
reported that diagnosis had played an important
part in her treatment as it gave her ‘something to
recover from’ and that staff were optimistic about
her recovery. Veysey’s study57 echoed this theme;
every participant recounted anecdotes of individ-
ual practitioners who they remembered as
instilling hope. The idea of the clinician seeing
beyond the diagnosis and acknowledging the con-
text of the participants behaviour was linked to
the helpful experiences shared in this study57.
Discussion
Although research into BPD has been increasing
in recent years, there has been limited consider-
ation amongst the literature of SUs’ experiences
of receiving a diagnosis of BPD. The present
review aimed to illuminate and synthesize SUs’
subjective experiences, understanding and inter-
pretation of receiving a diagnosis of BPD, with
particular interest in their perceptions of the deliv-
ery of the diagnosis.
This review identified 12 qualitative studies
through which narrative synthesis identified two
overarching themes: negative and positive experi-
ences of receiving a diagnosis of BPD. These
themes were described using the following sub-
themes: the communication of diagnosis and
meaning made of it, validity around diagnosis
and attitudes of others.
Findings highlight that themes pertaining to
the process of diagnosis delivery, such as receiving
a lack of information about the diagnosis54,61, a re-
luctance of mental health professionals to convey
the diagnosis and, in some cases, the diagnosis be-
ing withheld53–56, can elicit powerful, negative
emotions in SUs and reinforce their perception
of being stigmatized and rejected, particularly by
health professionals and services55,58,59. The find-
ings of this review suggest that diagnosis delivery
in this way can contribute significantly to SUs’ un-
derstanding and interpretation of their diagnosis,
with many holding an undesirable view of
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272 R. Lester et al.
themselves and their identity after receiving the
‘label’, perceiving themselves to be ‘bad’ or
‘wrong’53,55,57,60,61.
Whilst some of the identified themes, such as
experiences of inconsistencies in care, treatment
exclusion and stigmatization from health profes-
sionals, mirror concepts described in the wider lit-
erature surrounding the diagnosis of BPD9,12,14,25,
the process of diagnosis delivery appears particu-
larly influential upon these areas. More specifi-
cally, the emotions evoked in individuals by the
BPD diagnosis, such as hopelessness, shame and
inadequacy, as reflected in this review, appear to
be initially elicited on receipt of the diagnosis
and maintained through subsequent encounters
when living with the diagnosis, perceptions com-
monly referred to in the wider literature9,15. Anal-
ogous to a study by Dyson and Brown17, who
discovered that SUs appeared to define themselves
through their diagnosis, findings from the present
review indicate that the perception of diagnosis
as an identity was reflected amongst SUs’ experi-
ence of receiving the diagnosis.
More positive interpretations of the diagnosis
communicated by SUs in this review, such as its
efficacy in providing a clearer understanding of
the self, it becoming a part of their identity, it
helping them to make sense of their difficulties
and connect with others54,56–59,64, echoed the
findings earlier, emphasizing that the way the diag-
nosis is delivered can significantly influence SUs
perceptions of the diagnosis and its validity, par-
ticularly in relation to instilling hope for the
future58,59.
The synthesis of findings also highlights areas of
change that appear to be integral for SUs receiv-
ing a diagnosis of BPD. Previous literature has em-
phasized the value of specialized training about
BPD in improving health professionals’ attitudes
to SUs with the diagnosis and subsequent caregiv-
ing31. The in-depth experiences of SUs captured
in this review emphasize that when an empathic,
careful and non-judgemental approach was taken
by health professionals when delivering the diag-
nosis, unsurprisingly it was received much more
© 2020 John Wiley & Sons, Ltd.
positively. Indeed, the review underlines how the
diagnostic delivery process may support SUs who
receive the diagnosis to feel empowered and hope-
ful about their capacity for change. Encouragingly,
these findings are consistent with best practice
guidelines48 for communicating the BPD diagnosis
which suggests that such an approach from clini-
cians, which is also validating of the SUs situation
and current difficulties, helps to engage the SU in
treatment and fosters a belief that a valuable and
beneficial service is on offer. Extending beyond
the SU narratives within this review, clinical
guidelines48,65,66 highlight the importance of fo-
cusing on the person as a whole in the process of
communicating diagnosis. This may be conveyed
through sharing the formulation with the person,
including how their past experiences are linked
to their present-day symptoms and functioning.
It is suggested that this holistic approach helps to
promote the identification of other psychosocial
problems48. The strategy recommends that the di-
agnosis assessment process is ended by restating
the SUs strengths and resilience, further
empowering the SU and promoting engagement.
It was also interesting to note that the synthe-
sized narratives of the SUs in this review did not
go as far as to capture the role of carers within
the diagnostic delivery process. Because ratified
guidelines for best practice65 recommend the fa-
cilitation of an open discussion with the SU in
relation to how they can be supported to inform
their carer/s of their diagnosis should they wish
to share it, this may be useful to explore in future
research. Clinical practice guidelines46,48,65 also
advise clinicians involved in the diagnostic de-
livery process that it may be valuable to provide
the carer/s with information about BPD, treat-
ment options and importantly how they can
therapeutically support the SU. It was also rec-
ommended that carers and families receive infor-
mation of available support services, such as
carer-led BPD educational programmes and re-
spite services67. Such recommendations appear
both pertinent and crucial given the findings of
previous research exploring perceptions and lived
14: 263–283 (2020)
DOI: 10.1002/pmh

experiences of carers and families of individuals
with a diagnosis of BPD.37–41
Implications for clinical practice
The present review emphasizes the importance of
the diagnostic delivery process for people who
are receiving a diagnosis of BPD and highlights
themes and characteristics that may empower
change in this area. SUs consistently described
the importance of meaningful relationships in
terms of hope, recovery and survival. They cited
that the most significant support they received
was from people whom they could trust59. Close-
ness, acceptance and reassurance were experi-
enced as very welcome and positive59, as well as
feeling listened to, treated respectfully and under-
stood53. Findings from previous literature suggest a
number of influential factors promoting disclosure
of the diagnosis: SU autonomy, possibilities for
psychoeducation and collaboration with the SU
towards more specific and effective therapies, and
the increasing availability of diagnostic informa-
tion available to SUs from sources other than their
clinicians45. This review highlighted the impor-
tance of communicating the diagnosis openly
and transparently, again reinforcing the value of
trust within the therapeutic relationship between
the SU and health professional53. Appropriate dis-
cussion with SUs was a critical element of provid-
ing the diagnosis for professionals as when time
and care were taken to explain the diagnosis in
the context of the person’s life, it was received
much more positively58. The findings of the cur-
rent review also highlight that socialization to
the diagnosis itself or sessions around mental
health need and formulation should be seen as
therapeutic sessions in their own right and incor-
porated into SUs care and treatment programmes
for BPD. Given the heterogeneity of SUs experi-
ences of the diagnostic delivery process, including
the sensitivity of elicited information and diversity
of emotions that this process can activate, post-
assessment support is imperative. Clinical guide-
lines for best practice echo this, proposing out-of-
© 2020 John Wiley & Sons, Ltd.
A diagnosis of borderline personality disorder 273
hours crisis support and contact numbers for
third-sector organizations.48 National clinical
guidelines46 recommend that commissioners
should work with independent sector mental
health providers, including third-sector advice
and support services, to ensure that they are
equipped with the fundamental skills, training
and clinical supervision to adequately and effec-
tively meet the ongoing needs of this client group.
Interestingly, findings from the personality dis-
order consensus statement68 highlighted how ac-
cessibility to treatment and the quality of services
for individuals with a personality disorder diagno-
sis varied across different locations around the UK.
For example, in a recent survey, 84 percent of
mental health trusts in England stated that they
had a dedicated service for individuals with a diag-
nosis of personality disorder. However, only 55
percent of the same trusts had equal access to these
services across their catchment area69. The con-
sensus statement highlighted multiple experiences
of exclusion for individuals from minority ethnic,
cultural and racial backgrounds due to inadequate
adaptive assessment and treatment resources for
these vulnerable populations. In addition to find-
ings from previous research45, the consensus state-
ment not only suggested that early diagnosis is
preferable but also that there is limited attention
given to older adults who are less likely to receive
a diagnosis of personality disorder. It highlighted
how a combination of organic and personality dis-
order difficulties may be particularly challenging
and may not be understood within current assess-
ment services. These findings reinforce the need
for health organizations to consider and under-
stand the diversity of the population who may ac-
cess their support services and that diagnostic
assessment and treatment programmes are fully in-
clusive and equipped to meet the needs of all cli-
ent groups.
Furthermore, the aforementioned findings sug-
gest that mental health organizations who use di-
agnostically driven clinical treatment pathways
should strive to provide staff training programmes,
not solely on understanding the diagnosis per se
14: 263–283 (2020)
DOI: 10.1002/pmh
274 R. Lester et al.
but also, and possibly more importantly, how to
deliver it in the correct way. A process of delivery
that serves to facilitate these characteristics may
positively adjust SUs’ perceptions of their diagno-
sis, enhance their engagement with services and
thus promote a more meaningful, holistic recovery
process. The findings reinforce best practice guide-
lines for working with individuals with a diagnosis
of BPD and, specifically, for conducting the diag-
nostic assessment48,67.
Changes in experiences over time
The findings of this review suggest that there has
been a shift in attitudes towards BPD over 16 years.
The SU narratives within the earlier stud-
ies53,55,56,62 conveyed experiences largely of rejec-
tion and exclusion, which had elicited negative
emotional affect. Such experiences appeared prin-
cipally attributable to the attitudes and ap-
proaches of clinicians, particularly surrounding
the withholding of the diagnosis or information
surrounding the diagnosis. Although these themes
were communicated by some SUs in later stud-
ies,54,57–61,63,64 a range of positive perceptions
were also revealed; some SUs perceived their diag-
nosis as useful in helping them to contextualize
their difficulties, whilst others expressed hope for
recovery through learning of available treatment
opportunities. In the latest study,58 all eight SUs
had reported that when time and care were taken
to explain what BPD was, why it might occur, how
it might manifest for different people and how one
might try to manage ensuing difficulties, that the
diagnosis of BPD ‘made sense’. Inspiringly, two
SUs voiced a need for professional training sur-
rounding the appropriate discussion of diagnosis
and even volunteered to speak to staff groups
about this. This highlighted the importance of
SU involvement and collaborative working,
which is emphasized in clinical best practice
guidelines.48,67
These findings, to some extent, may reflect a
potential shift towards positive experiences for
SUs in light of the introduction of national
© 2020 John Wiley & Sons, Ltd.
guidance for UK services.65,66 This was mirrored
by Morris, Smith and Alwin75 who concluded that
SUs who felt that the diagnostic process had been
a helpful experience and well handled by staff per-
ceived BPD much more positively than those who
had not.
It is important to note that the aforementioned
findings were contextualized to community mental
health settings, which incorporated all but two of
the studies. The remaining two studies were con-
ducted within forensic services60,64 and captured
predominantly negative SU experiences of receiv-
ing the diagnosis of BPD. The SUs in the earlier
study60 described their diagnosis as confusing and
pejorative, whereas a number of SUs in Lovell
and Hardy’s later study64 felt that the label gave
them a sense of identity and provided an explana-
tion for their behaviour. Interestingly, none of the
accounts of SUs within forensic services
commented on whether the diagnostic delivery
process encouraged hope and optimism for
recovery.
In whole, these findings are inspiring and may
in part demonstrate the maturity of the field,
reflecting an array of developments within health
services and more substantial evidence for treat-
ability of this SU group. This positive attitudinal
shift is an encouraging step towards effective as-
sessment and treatment pathways for BPD and
may reflect a changing landscape of the mental
health system, including a greater awareness of
therapeutic approaches to this SU group and an
understanding and use of effective treatments.
Limitations
Several limitations to the present review must be
acknowledged. Firstly, the search strategy may
not have captured all the relevant articles. The
choice of database influences the coverage of po-
tential journal papers to be included.70 This re-
view employed only three databases; some
relevant journals may not have been indexed by
these databases. Further, the terminology in the
search strategy may not have been adequately
14: 263–283 (2020)
DOI: 10.1002/pmh

broad to capture all published research on SU per-
ceptions of receiving a diagnosis of BPD. How-
ever, this must be balanced against the feasibility
of processing the results of an over-inclusive
search strategy. Scoping of relevant papers (refer-
ence lists) in this review identified three addi-
tional papers that were not detected through
database searching. A further limitation of the
search strategy has been highlighted; for practical
reasons only, published literature was sourced.
However, it appears unlikely that publication sta-
tus would be a substantial source of bias in the cur-
rent context.
Additionally, all studies utilized a qualitative
research methodology, predominantly an interpre-
tative approach, to explore SUs’ subjective experi-
ences, understandings, perceptions and views.71
This exploratory and subjective approach makes
generalizing the outcomes to the wider population
challenging because interpretative phenomeno-
logical analysis focusses on the detailed analysis
of individual reports as opposed to the generaliz-
ability of the findings.72 Qualitative research is
by its nature a subjective process, though the cur-
rent review aimed to address potential researcher
bias by two authors independently coding the re-
trieved perceptions into themes and the third au-
thor reviewing the themes. This use of multiple
perspectives (‘triangulation’), in which disagree-
ments were negotiated through consensus, added
rigour to the analysis process and built credibility
in the research process.73 The outcomes of this
qualitative synthesis provided value through
building a collective understanding of the data re-
garding SU experiences of receiving a BPD diag-
nosis, not by establishing definitive causal links.
A number of researchers from the qualitative par-
adigm have described the difficulties of synthesiz-
ing studies that come from diverse qualitative
methodologies.74 They have argued that such pro-
cesses may discourage thoughtful analysis75 and
are derived from positivist stances and audit-
driven cultures.76 They have also noted that syn-
thesis processes may not do full justice to the orig-
inating studies. However, rather than adopt the
© 2020 John Wiley & Sons, Ltd.
A diagnosis of borderline personality disorder 275
all-or-nothing ‘false dualism’ of a qualitative-vs.-
quantitative dichotomy,77 we take the pragmatic
perspective78 that different methodologies will
yield different insights.
This review utilized counts of themes and the
number of studies reporting each theme. It is rec-
ognized that, although such counts may reveal
the relative importance of topics, this is not neces-
sarily the case. For example, topics which were
mentioned in various forms may be
overemphasized (e.g. social stigma and self-
stigma). However, the method provides a valuable
starting point for stimulating future research and,
more specifically, for generating structured, yet
therapeutic, diagnostic pathways for BPD.
The majority of the study samples included in
this review were female, which may limit the gen-
eralizability of the findings with respect to the ex-
perience of male SUs. The exclusion of studies
exploring SU views of being diagnosed with other
personality disorders may have reduced the oppor-
tunity to include more male participants in this re-
view, because it is known that diagnoses such as
schizoid, schizotypal, paranoid, antisocial, narcis-
sistic and obsessive–compulsive personality disor-
ders are more prevalent in men.1,79 The nature
of the sampling process also means that the partic-
ipants attracted to take part in the studies may not
have been entirely representative of the popula-
tion as those wanting to share their stories may
be more likely to have had more difficult experi-
ences, thus impacting on the range of perspectives
provided by participants. However, the majority of
studies included in this review did report a spec-
trum of views and experiences from those who
found the experience of diagnosis distressing to
those who found it validating and meaningful.
Quality assessment of included studies
The majority of studies53,55,56,58,59,61–64 included
in this qualitative synthesis met all reporting
guidelines for qualitative research according to
the consolidated criteria for reporting qualitative
research (92). The criterion of the consolidated
14: 263–283 (2020)
DOI: 10.1002/pmh
276 R. Lester et al.
criteria for reporting qualitative consists of three
key domains: research team and reflexivity, study
design, and analysis and findings. Each of the do-
mains incorporates sub-domains and a checklist
of items for consideration in each qualitative
study.80 One of the domains which did not appear
to be met in some studies54,57,60 was research team
and reflexivity, particularly in relation to the re-
searchers’ relationship with participants. Addi-
tionally, one study54 did not appear to explain its
methodological orientation and theory nor did it
adequately distinguish which researchers con-
ducted the steps of data analysis.
Conclusions and future directions
The present review concludes that, although the
concept of the BPD diagnosis continues to gener-
ate great controversy, the diagnostic delivery pro-
cess appears to be fundamental to SUs’
understanding and interpretation of the diagno-
sis, shaping their views about hope for recovery
and subsequent engagement with services. De-
spite the introduction of legislation stipulating
the requirement of UK services to be inclusive
of SUs with a diagnosable personality disorder,66
findings of this review coupled with best practice
guidelines48 illustrate that further improvements
can be made. These findings were echoed in
the recent qualitative study of Flynn et al.81
which concluded that the care pathway for indi-
viduals with personality disorder remains unclear
to clinicians and SUs, and elements of the path-
way are disjointed and not working as effectively
as they could. The study highlighted that guide-
lines recommended by National Institute for
Health and Care Excellence46 are not being
followed and that specialist psychological inter-
ventions should be available to ensure consistent
and stable care provision.
The synthesized narratives of SUs in this re-
view highlight that the authenticity in the rela-
tionship between the SU and staff is crucial to
instilling a more optimistic perception of BPD
for SUs and services. The review emphasizes the
© 2020 John Wiley & Sons, Ltd.
importance of fostering a collaborative and sensi-
tive communication process of diagnosis delivery,
which is conversational rather than solely educa-
tional—it is not what you say rather how you say
it together.
Service reformation and large-scale structured
training packages, such as those recommended by
the National Institute for Mental Health in En-
gland guidance,65 could significantly improve
SUs’ experiences of receiving a diagnosis of BPD
and subsequent treatment. The findings of this re-
view advocate a collaborative, integrative, and re-
lational approach and thereby promote an
inclusive health service for those both receiving
and living with a BPD diagnosis. Further qualita-
tive studies obtaining consumer perspectives of
service assessment and diagnostic delivery pro-
cesses could further inform clinical guidelines
and the enhancement of existing care and treat-
ment pathways for BPD.
Should we still use the borderline personality disorder
diagnosis?
As emphasized earlier, this review illustrated that
the ‘how’ rather than the ‘what’ is important to
SUs when they are receiving a diagnosis of BPD.
SUs wanted a diagnosis that was useful in provid-
ing a clearer understanding of self, their identity
and their difficulties. Although for some the diag-
nosis of BPD achieved this, for others it was
viewed as stigmatizing and came with many nega-
tive assumptions. To this extent, this review con-
cludes by supporting the consensus statement68
and recommends that the BPD diagnosis is
changed to more accurately explain and compas-
sionately meet the complex relational and emo-
tional needs of people diagnosed with BPD. It
may be time to ensure that any new ‘label’, if
needed and when used, has ‘function’ central to
its development.
This systematic review conforms to the pre-
ferred reporting items for systematic reviews and
meta-analyses statement.82
14: 263–283 (2020)
DOI: 10.1002/pmh

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Address correspondence to: Rachael Lester, St
Helens Recovery Team, Harry Blackman House,
Peasley Cross Hospital, Marshalls Cross Road, St
Helens, Merseyside WA9 3DE, UK. Email:
rachael.lester@nwbh.nhs.uk
14: 263–283 (2020)
DOI: 10.1002/pmh

Table A1: Summary table of studies included in the review
Authors Study aims
Black et al.60 To explore the experience of having a
BPD diagnosis within the context of
forensic secure and community
services
© 2020 John Wiley & Sons, Ltd.
Bonnington and (1) To understand and explore the
Rose61 experiences of stigma and
discrimination amongst people with
a diagnosis of bipolar disorder or BPD
and (2) to explain these experiences
in light of their structural
antecedents
Fallon56 (1) To analyse the lived experience of
the participants’ contact with
psychiatric services, (2) to describe
the impact various modalities of
service had on individual SUs and
(3) to utilize service user (SU)
perspectives of service to discuss the
perceived role and function of
mental health service provision to
people with BPD
Fromene and To find out more about the contextual
Guerin54 factors underlying the symptoms of
the BPD diagnosis within indigenous
Pts
Horn et al.59 To explore user experiences and
understandings of being given the
diagnosis of BPD
DOI: 10.1002/pmh
14: 263–283 (2020)
Study design/analysis
Semi-structured interviews
analysed using IPA
Semi-structured interviews
analysed using thematic
analysis
Unstructured interviews
analysed using grounded
theory
Informal, semi-directive
interviews (yarning) carried
out to identify themes
although exact type of
analysis not explicit within
the study
Semi-structured interviews
analysed using IPA
280
Main findings/themes related to
Participants (Pts) diagnosis
R. Lester et al.
N = 10 Talks about diagnosis being confusing,
contradictory and pejorative
8 (male) and 2 (female) Might be elements of the BPD diagnosis
that provoke real and imagined
attack for Pts
Diagnosis experienced as ‘being bad’,
‘being a child’ and ‘being under
attack’
N = 46 Talks about the diagnosis, when
Within BPD Pts: eventually conveyed, being rarely
17 (female) and 5 (male) explained to Pts, suggesting they
were being held at arm’s length
N=7 Highlights reluctance of MH
4 (female) and 3 (male) professionals to tell Pts their
diagnosis and two had only been told
when they were recruited for this
study
Pts felt that despite the stigma and
negative attitudes they had
encountered that having a label
helped them to make sense of their
feelings and behaviours
N=5 Three Pts had never been told that they
4 (female) and 1 (male) had a label of BPD or had been given
information about it. Every
individual interviewed wanted more
information about their diagnosis
and possible treatments. Four of five
Pts found having a diagnosis was in
some ways useful—connecting with
other people and realizing that they
were not alone
One Pt felt that the diagnosis did not fit
N=5 Within theme of knowledge as power:
4 (female) and 1 (male) sub-theme of diagnosis providing
focus and a sense of control by Pts
but also sub-theme of knowledge
being withheld and others as experts
Theme of uncertainty about what the
diagnosis meant—for some, aspects
(Continues)
 Table A1: (continued)
Authors Study aims
© 2020 John Wiley & Sons, Ltd.
Lovell and Hardy64 To explore the lived experience of
having a diagnosis of BPD in a
forensic setting
Morris et al.63 (1) To explore the experiences of
individuals with a diagnosis of BPD
in accessing adult mental health
services following the introduction of
national guidance for UK services
and (2) to better understand which
aspects of contact with services can
be helpful or unhelpful
DOI: 10.1002/pmh
14: 263–283 (2020)
Study design/analysis
Semi-structured interviews
analysed using IPA
Semi-structured interviews
analysed using an inductive
thematic analysis
Main findings/themes related to
Participants (Pts) diagnosis
of diagnosis led to sense of knowledge
and control, but for others, it was
experienced as simplistic and less
useful.
Diagnosis is seen as rejection and often
leading to withdrawal of services.
For some, diagnosis provided hope and ‘a
light at the end of the tunnel’
particularly in relation to treatment
they were offered.
N=8 Pts felt that the diagnosis had been given
All female sample to them against their will, and they
could not escape from it.
Pts described how the label of BPD had
taken the essence of them away.
A number of Pts viewed BPD as part of
their identity and that the diagnosis
explained their behaviour.
Identity theme emerging as important
for all Pts due to a diagnosis of BPD
either adding or taking away
meaning from their lives
N=9 Pts indicated that the way they were told
7 (female) and 2 (male) about their diagnosis influenced how
they felt about BPD. Some saw BPD
as an arbitrary label, attracted after
years of accessing services and having
already exhausted other diagnoses.
Some Pts felt that they had been told of
their diagnosis in an insensitive
manner—these Pts seemed to feel
less positive about BPD than those
who felt the diagnostic process had
been a helpful experience and well
handled by staff.
Many Pts reported having a limited
understanding of the meaning of
their diagnosis due to services not
providing information.
Optimism about treatment and recovery
also seemed to impact on the way in
which Pts perceived their diagnosis.
(Continues)
A diagnosis of borderline personality disorder
281

Table A1: (continued)
Authors Study aims
Nehls62 To generate knowledge about the
experience of living with the
diagnosis of BPD
© 2020 John Wiley & Sons, Ltd.
Ramon et al.53 (1) To respond to the gap in evidence as
to how people diagnosed with PD
view the meaning of the diagnosis
and the value they attach to different
interventions and supporting
structures and (2) to extend research
involvement of mental health SUs to
those attributed with PD
Richardson and To explore the views of patients caught
Tracy58 at the diagnostic interface of BPD
and bipolar disorder
DOI: 10.1002/pmh
14: 263–283 (2020)
Study design/analysis
Individual ‘private’ interviews
analysed using
interpretative
phenomenological analysis
(IPA)
Semi-structured interviews
analysed using an
interpretative approach
Semi-structured interviews
analysed using a thematic
analysis software package
282
Main findings/themes related to
Participants (Pts) diagnosis
R. Lester et al.
N = 30 According to Pts, providers of care had
All female sample negative opinions of people with a
BPD diagnosis, and they referred to
this as being labelled rather than
diagnosed.
It was the consequences of BPD as a
negative label, not the diagnosis itself
that was problematic. Pts felt the
diagnosis fit but had no beneficial
purpose in guiding treatment.
N = 50 SUs most commonly experience the
Age 18–34, 75% male BPD diagnosis as having a negative
Age 35–74, 25% male impact on professional attitudes
across a range of agencies.
BPD diagnosis does not seem to clarify or
explain things to SUs apart from
bringing with it a sense that
professionals have given up on him/
her or that something is wrong/bad
with them. E.g. some Pts described
BPD as ‘a life sentence—untreatable
—no hope’, ‘being rubbished by
clinical staff’.
N=8 Most Pts reported that they did not have
time to ask questions or talk through
what diagnosis meant and several
used the term ‘abandoned’ in this
context.
All female sample Several Pts initially challenged the
diagnosis of BPD, but only in the
context of feeling they were being
dismissed or pejoratively judged by
staff.
All 8 Pts stated that when time and care
were taken to explain BPD that the
diagnosis ‘made sense’—many
described a sense of relief at having
their difficulties contextualized,
allowing them to think of how they
might prospectively deal with it.
Two Pts said that they felt sufficiently
strong that the appropriate discussion
(Continues)
 Table A1: (continued)
Authors Study aims
Stalker et al.55 (1) To explore the views of SUs and
providers about the meaning of ‘
personality disorder’ and the
© 2020 John Wiley & Sons, Ltd.
usefulness of this term, (2) to
examine SUs and provider
perceptions of the main ‘problems in
living’ experienced by people with
this diagnosis, (3) to identify the
strategies and supports that people
employ to address their difficulties,
(4) to explore views about the
helpfulness of existing MH services
and good practice and (5) to explore
SU and provider perceptions of risk,
and helpful responses to risk
Veysey57 To explore the perceptions of clients
who self-identified as having
encountered discriminatory
experiences from health care
professionals
DOI: 10.1002/pmh
14: 263–283 (2020)
Main findings/themes related to
Study design/analysis Participants (Pts) diagnosis
of diagnosis with patients was a
critical professional training need.
Semi-structured interviews N = 10 Majority of Pts said they had little or no
analysed using grounded 8 (female) and 2 (male) idea what the term ‘personality
theory disorder’ meant. Some appeared to
have accepted the diagnosis and took
it to mean that there was something
fundamentally wrong with them.
Although the majority were aware of
their diagnosis, several felt they had
never been given a clear explanation
of it.
Several Pts reported that they had only
discovered their diagnosis by
accident.
When asked about the helpfulness of the
diagnosis, half of the Pts replied that
it was a derogatory term which they
heartily disliked.
Semi-structured interviews N=8 Pts perceived negativity from health
analysed using IPA 7 (female) and 1 (male) professionals connected directly to
the BPD diagnosis, being seen as
‘attention seeking’, ‘unreasonable/
difficult’, ‘manipulative’ and ‘taking
resources from other patients’—this
often negatively impacted how Pts
saw themselves.
‘Connecting’ (through caring and
building relationships) and ‘seeing
more’ (beyond the diagnosis; the
context of the Pts behaviour) linked
the helpful experiences shared.
A diagnosis of borderline personality disorder
283