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This study investigates the illness experience of women who are affected by primary biliary cirrhosis (PBC), a rare chronic liver disease which mostly affects women. Despite the fact that PBC is medically recognised, it shares many characteristics with other chronic and controversial conditions which may lead to delegitimation of the patient's experience of illness, impacting on the construction of the patient's self-identity. Twenty three women took part in semi-structured interviews. Data were analysed using interpretative phenomenological analysis and the analysis identified three themes that are interrelated and characterised by a dynamic of normalisation. The first theme, the delegitimation of women's experience, implies denial of patients' sick-role, trivialisation of fatigue and lack of consideration of patients' needs. The second theme, PBC as a challenge to women's social identity refers to how patients face delegitimation and manage the illness's consequences for relationships and social roles. The third theme, the need for biographical continuity, focuses on how patients construct their ill identities as a consequence of both the delegitimation and the challenges posed by PBC. Results are discussed in a gender perspective, highlighting how delegitimation and identity construction processes are influenced by women's social roles and conditions.
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Psychology & Health
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'It's as if PBC didn't exist': The illness experience of women affected by
primary biliary cirrhosis
L. Montalia; A. Frigerioa; P. Rivaa; P. Invernizzib
a Department of Psychology, University of Milano-Bicocca, 20126 Milan, Italy b Center for
Autoimmune Liver Diseases, Division of Internal Medicine, IRCCS Istituto Clinico Humanitas, 20089
Rozzano (MI), Italy
First published on: 14 June 2011
To cite this Article Montali, L. , Frigerio, A. , Riva, P. and Invernizzi, P.(2011) ''It's as if PBC didn't exist': The illness
experience of women affected by primary biliary cirrhosis', Psychology & Health,, First published on: 14 June 2011
To link to this Article: DOI: 10.1080/08870446.2011.565876
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Psychology and Health
2011, 1–17, iFirst
‘It’s as if PBC didn’t exist’: The illness experience of women
affected by primary biliary cirrhosis
L. Montali
*, A. Frigerio
, P. Riva
and P. Invernizzi
Department of Psychology, University of Milano-Bicocca, Piazza dell’Ateneo Nuovo 1,
20126 Milan, Italy;
Center for Autoimmune Liver Diseases, Division of Internal
Medicine, IRCCS Istituto Clinico Humanitas, via A. Manzoni 113,
20089 Rozzano (MI), Italy
(Received 30 November 2010; final version received 21 February 2011)
This study investigates the illness experience of women who are affected by
primary biliary cirrhosis (PBC), a rare chronic liver disease which mostly
affects women. Despite the fact that PBC is medically recognised, it shares
many characteristics with other chronic and controversial conditions which
may lead to delegitimation of the patient’s experience of illness, impacting
on the construction of the patient’s self-identity. Twenty three women took
part in semi-structured interviews. Data were analysed using interpretative
phenomenological analysis and the analysis identified three themes that are
interrelated and characterised by a dynamic of normalisation. The first
theme, the delegitimation of women’s experience, implies denial of patients’
sick-role, trivialisation of fatigue and lack of consideration of patients’
needs. The second theme, PBC as a challenge to women’s social identity
refers to how patients face delegitimation and manage the illness’s
consequences for relationships and social roles. The third theme, the need
for biographical continuity, focuses on how patients construct their ill
identities as a consequence of both the delegitimation and the challenges
posed by PBC. Results are discussed in a gender perspective, highlighting
how delegitimation and identity construction processes are influenced by
women’s social roles and conditions.
Keywords: primary biliary cirrhosis; illness experience; delegitimation;
fatigue; interpretative phenomenological analysis; gender roles
This study investigates the illness experience of women who are affected by primary
biliary cirrhosis (PBC) from a gender perspective. PBC is a rare, autoimmune,
chronic liver disease that primarily affects women (90% of all cases are women) in
mid-life (aged 40–60). The main symptoms of PBC are fatigue and pruritus. Fatigue
has been noted in up to 85% of PBC patients (Al-Harthy, Kumagi, Coltescu, &
Hirschfield, 2010) but its distribution is extremely variable and the symptom does
not correlate with disease severity or liver test (Goldblatt et al., 2002). In
PBC patients, fatigue may have a significant impact on the quality of life
*Corresponding author. Email:
ISSN 0887–0446 print/ISSN 1476–8321 online
ß2011 Taylor & Francis
DOI: 10.1080/08870446.2011.565876
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(Jorgensen, 2006); high levels of fatigue have been associated with early mortality,
increased risk of liver-related death and the need for a liver transplant (Bjo
et al., 2010). Pruritus is present in approximately 20% of patients and its cause is
unknown (Greenberger, Blumberg, & Burakoff, 2009).
Histological staging of PBC (stages 1–4) is a measure of disease severity (EASL,
2009). It is assessed through a liver biopsy and aids in determining prognosis
(Scheuer, 1983). Features of all four stages of PBC can co-exist simultaneously in a
single biopsy (EASL, 2009). Early stages are characterised by inflammation, later
stages are marked by physical complications: ascites, hepatic encephalopathy and
gastrointestinal bleeding (Greenberger et al., 2009). Stage 4 corresponds to cirrhosis
(Floreani et al., 1999) and it is end-stage liver disease. Histological progression is
slow (Jorgensen, 2006) and variable, with 20% of patients remaining stable
(Greenberger et al., 2009).
Environmental factors, including infectious agents, chemicals contained in
cigarette smoke and hormone replacement therapies, are significantly associated
with increased risk of PBC in genetically susceptible individuals (Corpechot,
´tien, Chazouille
`res, & Poupon, 2010). Frequent association of PBC with other
autoimmune diseases (almost in the 30% of cases) is a factor that decreases survival
in patients (Kaplan & Gershwin, 2005).
There is no known cure for PBC, but medication can slow the progression of the
disease. Ursodeoxycholic acid is the treatment of choice for patients. It improves
biochemical test results, but it has no significant effect on symptoms. Specific
treatment for fatigue is unavailable (EASL, 2009).
PBC is characterised by a high degree of uncertainty concerning aetiology,
diagnosis, treatment and prognosis and has a problematic nature that is largely due
to three main issues.
First, PBC is often a silent illness because the majority of patients (50–60%) are
asymptomatic at diagnosis and discover their illness doing routine blood tests
(Prince, Chetwynd, Craig, Metcalf, & James, 2004) and one-third of patients may
remain symptom-free for a lot of years (Prince, Chetwynd, Newman, Metcalf,
& James, 2002). This contradicts the common-sense representation of illness, which
is usually associated with somatic manifestations (Nascimiento-Schulze, Garcia,
& Arruda, 1995) and inactivity (Herlizh, 1969).
Second, PBC’s main symptom, fatigue, is invisible, ambiguous and subjective,
lacks a precise bodily location, is difficult to quantify and is nonspecific. Indeed,
fatigue is a common condition among patients with other chronic illnesses and
among the general population. Since the aetiology of fatigue in PBC is undefined and
fatigue symptoms do not correlate with disease severity, some authors questioned the
direct association between PBC and fatigue (Bjo
¨rnsson, Simren, Olsson, &
Chapman, 2005). Overall, these elements can lead to a trivialisation of fatigue as a
symptom (Kralik, Telford, Price, & Koch, 2005). On the one hand, attributing
meaning to fatigue is challenging (Hart & Grace, 2000), particularly because fatigue
is not related to activity or rest in patients with PBC. On the other hand, due to the
subjective nature of fatigue and the lack of effective therapeutic treatments, this
symptom is often ignored and underreported by physicians (Al-Harthy et al., 2010),
who instead tend to focus on objective measures of disease (Swain, 2000). Thus, due
to its elusive aetiology and ambiguous boundaries, chronic fatigue ‘can result in
stigmatisation, accusations of symptom psychologising and questioning of moral
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character’ (Jorgensen, 2008, p. 203). Fatigue is often normalised by others (Fahey,
1999) or not taken seriously (Dumit, 2006).
Finally, PBC is difficult to characterise because it has an autoimmune aetiology,
and patients who report symptoms of autoimmune diseases must often fight for
disease recognition (Sogolow, Lasker, & Short, 2008). Autoimmune diseases tend to
be conceptualised by others as merely psychological and consequently stigmatised as
not ‘real’ (Lasker, Sogolow, & Sharim, 2005). For PBC patients, this may be also due
to a lack of information and public debate that make this pathology a sort of socially
invisible disease (Lonardi, 2007).
Therefore, despite the fact that PBC is medically recognised, it shares many
characteristics with other uncertain, chronic and controversial conditions, including
chronic fatigue syndrome, which often makes it difficult for patients to have their
sick-role socially recognised (Asbring & Narvanen, 2003; Dumit, 2006; Parsons,
1951) and may lead to delegitimation of the patient’s experience of illness and
Delegitimation has been defined as the experience of having one’s perceptions
and definitions of illness systematically disconfirmed by significant others
(Kleinman, 1992). It is strongly related to the difficulties encountered by patients
in reconstructing their self-identities (Dickson, Knussen, & Flowers, 2007b) and has
been found to aggravate the identity crises that patients frequently experience in
cases of chronic illness (Asbring, 2001; Larun & Malterud, 2007). The literature has
suggested that chronic health conditions are frequently connected to a sense of
biographical disruption (Bury, 1982) and a loss of identity. The disruption includes
the need to redefine the concept of one’s self (Charmaz, 1983, 1991), especially
individual responsibilities and social roles (Corbin, 2003). Thus, a diagnosis of PBC,
which is a chronic condition, may lead to a fundamental rethinking of a patient’s
biography (Fahey, 1999).
From a theoretical point of view, this study conceptualised illness as a social
experience that is shared and intersubjective (Kleinman et al., 1995; Ware, 1992).
Identity is conceptualised as a phenomenon that is contextually situated and
constructed through social and relational interactions (Todorova & Kotzeva, 2006).
In relation to this assumption, we adopted a gender perspective, assuming that
delegitimation and identity construction processes are influenced by women’s social
roles and conditions.
Regarding delegitimation, studies have shown that women’s symptoms are often
undervalued because they are interpreted as having a psychological aetiology
(Colameco, Becker, & Simpson, 1983; Malterud, 2000). Moreover, women must cope
with stereotypes that describe female patients as neurotic, prone to trivial complaints
(Milliken & Northcott, 1996; Wallen, Waitzkin, & Stockle, 1979) and ‘worried about
nothing’ (Barrett & Roberts, 1978).
Regarding identity, the experience of women with PBC may be characterised by a
conflict between the implications of fatigue and culturally prescribed expectations for
women. Traditionally, women are seen as caretakers within the family and are
expected to fulfil multiple roles (Fahey, 1999). Therefore, fatigue may interfere with
women’s caregiving roles and responsibilities, making it difficult for them to meet
family expectations and triggering a process of social isolation/marginalisation
(Ware, 1999). Consequently, this symptom can damage women’s concepts of self and
social relationships (Milliken & Northcott, 1996).
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This study aims to contribute to the existing psychological and social literature
on PBC that has thus far focused primarily on patients’ quality of life and the
evaluation of fatigue (Montali et al., 2010; Newton, Bhala, Burt, & Jones, 2006). At
the same time it assumes that the problems raised by PBC are not specific to this
disease because PBC, as previously discussed, is a chronic illness that is similar to
other so-called ‘contested diseases’ (Wilson, 2007).
We conducted 23 qualitative interviews with women affected by PBC (Table 1). We
did not aim to achieve a representative sample of the population of patients with
PBC; rather, we aimed to conduct an in-depth analysis of the reported experience of
a small group of patients to examine divergences and convergences among them
(Brocki & Wearden, 2006). The mean age of women in our sample was 59 years
(range: 39–77). Six participants lived alone and seven lived with their partners. Ten
patients lived with two or more family members: their sons/daughters, parents or
parents-in-law. Four participants had primary school certificates, seven had
secondary school certificates, ten had high school degrees and two had university
degrees. Ten participants were retired, eight were employed and five were
housewives. The period of time since each participant was first diagnosed ranged
from 1 to 24 years, with participants equally distributed across the continuum.
Concerning the histological phase, eight women were at the first stage, ten were at
the second, two were at the third and one was at the fourth; information about
histological stage was not available for two patients. The sample comprised patients
in all histological stages, in order to evaluate the differences in their illness experience
depending on the level of disease severity. Stages 3 and 4 are less represented than
stages 1 and 2 because patients in advanced stages are likely to have physical
complications that can impair their quality of life and, consequently, their ability to
underpin an interview. Eleven of the 23 women had liver cirrhosis.
The interviews took place at a Hepatology and Gastroenterology ward in a
hospital in Milan prior to a specialist’s medical visit.
Ethical approval was obtained by the hospital where the study was conducted. Given
the gender-specific nature and potential personal and sensitive impact of the topic
under discussion, all interviews were conducted by a trained female researcher who is
also the second author of this study. Prior to the interviews, patients were briefed
about the purpose of the investigation and were asked to sign a consent form.
Interviews were conducted following a collaborative approach, where the patient is
acknowledged as the expert on her illness, and an inductive approach, with open
questions and a progression from general topics to more specific issues. A topic
framework guide was used to explore the following issues: history of the illness and
impact of the diagnosis, experience of fatigue, influence of the illness on social
relationships, causal attributions, coping strategies and emotional correlates. The
guide was used in a flexible way, giving participants the opportunity to speak
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Table 1. Participants’ characteristics.
number Age
No of family
Study degree Profession
Years since
first diagnosis
stage Cirrhosis
1 54 3 High school Housewife 16 1 Yes
2 59 3 High school Retired 5 1 Yes
3 49 6 Secondary school Housewife 18 1 Yes
4 70 3 Primary school Skilled worker 14 2 Yes
5 40 4 University degree Employee 9 1 No
6 73 1 Primary school Retired 6 Yes
7 66 2 High school Retired 3 4 Yes
8 66 1 Secondary school Nurse 18 1 No
9 58 2 High school Retired 10 2 Yes
10 67 2 Secondary school Housewife 8 2 Yes
11 60 2 Secondary school Independent worker 10 1 No
12 72 1 Primary school Retired 12 3 Yes
13 77 1 Secondary school Retired 16 2 No
14 57 2 High school Retired 24 1 No
15 57 3 High school Employee 2 No
16 62 2 High school Retired 18 2 Yes
17 71 1 Secondary school Retired 21 3 No
18 41 4 Secondary school Housewife 7 2 No
19 39 4 University degree Employee 6 2 No
20 69 1 Primary school Housewife 6 2 Yes
21 45 3 High school Employee 2 1 No
22 48 4 High school Skilled worker 1 2 No
23 57 2 High school Manager 13 2 No
Who live with the patient.
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spontaneously about their experience. Interviews lasted an average of 60 min (range:
45–70 min). All interviews were audio recorded and fully transcribed.
Data analysis
Interview transcripts were analysed using interpretative phenomenological analysis
(IPA; Smith & Osborn, 2003). The aim of this approach was to represent and
understand the subjective experience of participants by identifying recurrent themes
in their narratives. IPA is a method that is widely used in health psychology. Given
its primarily phenomenological focus, it allows for the exploration of participants’
individual perspectives and for the interpretation of the meanings that their
experience holds for them, offering an insider’s perspective of the phenomena
(Brocki & Wearden, 2006). IPA enables the investigation of how individuals perceive
their social worlds and the highlighting of those socio-cultural elements that might be
relevant to patients’ reported experience. Moreover, IPA is particularly useful when
topics are both contextual and subjective, relatively understudied and where matters
relating to identity, the self and the construction of meaning are significant (Smith,
2004), as in the case of PBC.
Analysis followed the guidelines identified by Smith and Osborn (2003) and
included a series of recursive steps. The first step involved a repeated, in-depth
reading of the first transcript to familiarise the researcher with the patient’s narrative
and the meanings incorporated within it. This process led to the identification of all
meaningful aspects that emerged from the data, including keywords and interesting
elements. In the second step, recurrent content patterns were identified and organised
into potential emergent themes. This procedure was repeated for each transcript to
highlight similarities and differences within the group of patients. Data were then
organised into thematic categories, and each theme was linked to quotes that
expressed the essence of their content. In the third step, attention was paid to the
individuation of connections among the various themes and to their classification in
superordinate categories. Finally, a further re-reading of all interviews allowed for
the verification of whether the identified themes were recognisable in the transcripts
and to ensure that all salient themes had been identified.
Each stage of the analysis was initially conducted independently by the authors of
this article and later the overall results were discussed and combined. Comparing
coding results within the research group enabled the authors to reach a consensual
(and therefore more reliable) set of categorisations and interpretations of the themes.
To capture the meanings that participants attributed to events, the entire coding,
organisation and integration process required interpretation by the researchers
(Smith & Osborn, 2003). The verbatim extracts from participants’ accounts
presented in the results section were selected for their representativeness and
relevance to the themes. Participant anonymity was protected by not using real
The following section presents the three themes identified in the analyses, divided
into subcategories. The three themes characterise the illness experience of the PBC
patients and are clearly interrelated. The first theme, the delegitimation of women’s
experience, describes how social context relates to the illness and to the ill person as
experienced by the patients. The second theme, PBC as a challenge to women’s social
identity, refers to how patients face delegitimation and manage the illness’s
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consequences for relationships and social roles. The third theme, the need for
biographical continuity, focuses on how patients construct their ill identities as a
consequence of both the delegitimation and the challenges posed by PBC.
Theme 1: The delegitimation of women’s experience
In their accounts, women affected by PBC reported a delegitimation of their
experience that took three main forms: denial of patients’ sick-role, trivialisation of
fatigue and lack of consideration of patients’ needs.
Denial of patients’ sick role
Patients emphasised the tendency by both family members and physicians to
underestimate or minimise the impact that the illness was having on their lives. The
environment, therefore, seems to be an obstacle to the validation of their ‘ill status’:
My husband says, ‘‘It seems so strange to me that you’re ill because you look so
well’’ ...Of course I was looking well! I’d just lost loads of weight. (ID. 7)
The doctor looks at me and says ‘You sure don’t look ill’. (ID. 4)
In talking about their illness experience, participants highlighted the silent nature
of PBC and the absence of visible symptoms, which implies a lack of recognition of
their ‘ill status’ within their social contexts. In relation to this phenomenon, they
feared being stereotypically labelled as ‘imaginary sufferers’ or whiny:
Some people tell me, ‘‘You’re fine, you’ve got a good colouring ...perhaps it’s
nothing’’ ...There’s always someone who’s ready to criticise, saying things like ‘Perhaps
it’s nothing serious, and she’s making a fuss about nothing’. (ID. 20)
Trivialisation of fatigue
Another type of delegitimation is the trivialisation of fatigue symptoms. Due to the
fact that it is invisible and nonspecific, fatigue puts patients at risk of not being
considered credible by family members:
Fatigue is something that isn’t recognised as an illness. Actually, fatigue, in itself, is not
an illness. If someone says ‘I’m tired’, the other person says ‘yeah, well, thanks a lot, I’m
tired too’. (ID. 21)
The systematic disconfirmation and minimisation of the symptom experience is
reinforced by women’s efforts to meet the social expectations which are linked to
their gender roles. In a traditional gender view, women are expected to carry out the
household chores and other responsibilities implied by their gender roles. The fact
that women internalise these expectations and do ‘what they have got to do’
(Cornwell, 1984) seems to make the participants feel ‘normal’ and may easily turn
into a reason for underestimating fatigue and justifying the lack of understanding of
the impact of fatigue within the family context:
There is nothing that is openly visible in this illness, so everyone has kind of
underestimated it, seeing that, at the end of the day, I’ve still taken care of my chores,
did the housework ...but they never seem to remember that I am sick, and I might
actually be tired. (ID. 17)
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Lack of consideration of patients’ needs
Another important aspect that constitutes a form of delegitimation is linked to the
lack of family members’ consideration of the needs and requirements of the patients
as PBC sufferers:
No one ever comes and asks me if I want a cup of tea ...not even my husband ever asks
if I need anything ...he only had the guts to tell me, one Sunday when I wasn’t feeling
well, ‘Haven’t you cooked anything yet?’. His view of things is that a woman’s got to do
what she’s got to do, and a man’s got to be the breadwinner, and that’s it. (ID. 11)
As previously reported (Ussher & Sandoval, 2008; Yee & Schulz, 2000), women’s
accounts show that socially constructed gender roles lead family members to expect
women to put the needs of others before their own needs, regardless of their illness.
Family members’ expectations prevail upon the recognition of women’s needs for
assistance and psychological support. The prioritisation of family needs and the lack
of acknowledgement of their illness status generate frustration and distress:
My husband didn’t even come with me to the hospital. He chose to stay at a
party ...that was a tragic moment. Then I talked to him about it, but he had such a
reaction if I hadn’t told him anything tragic ...he always minimises it as
something trivial, something not important, without giving it any importance (...)my
family always sort of underestimates it, even if I never want to be pitied myself. (ID. 17)
Theme 2: PBC as a challenge to women’s social identities
The second theme concerns the impact of PBC on women’s social identities as it
relates to the delegitimation of their illness and symptom experience. The theme is
divided into two subthemes: fear of rejection and fear of losing women’s traditional
social role.
Fear of rejection
Because of the delegitimation of their experience, women highlighted that the
perceived risk of being rejected by family members led them to behave as if nothing
were wrong. Participants struggled to confirm their female identities, doing what
they have always done and aligning themselves with the expectations of their context,
instead of confronting the risk of losing their social status within the family and not
being needed anymore.
In particular, the women did not want to be considered a burden by making their
worries explicit. To circumvent this risk, they strove to carry out the caregiving
duties that are a central dimension of their female identities:
I don’t talk about it for fear of not being considered reliable any longer by those I love.
I don’t want [my son and my daughter-in-law] to think: ‘If she’s not well, how will she
be able to take care of the children’? At the moment they think I’m a reliable
grandmother, they leave the children with me, they ask me to run errands. If they knew I
feel ill, they could think I’m no longer capable ...(ID. 7)
The lack of recognition from others of their condition creates difficulties in
reclaiming the legitimacy of their needs as chronically ill patients. The women
seemed to believe that a request for assistance or support constituted a sort of
admission of inadequacy. To avoid feelings of frustration, they may deny being sick
and carry on their roles of housewives and caregivers. The choice to maintain the
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‘normality’ of everyday life and to cover up as much as possible their problems and
needs has paradoxical consequences. Indeed, this strategy is successful in circum-
venting moral discredit, but it also contributes to delegitimation because it makes
easier for others to minimise the illness consequences:
I don’t want to affect others with my illness. They’re all absorbed by their own
worries ...perhaps I should be the one to ask, but I find that difficult ...For months
I’ve had a lamp bulb that needs fixing, and my curtains haven’t been washed for a year,
but no one ever offers me any help. (ID. 17)
Participants seem to internalise the cultural construction of a ‘good woman’ as
self-renouncing (Ussher, 2004) and avoid creating a space to discuss the illness within
the family. This behaviour actively contributes to reinforce stereotypes:
My husband is also ill; he’s already got his own problems, so I can’t trouble him with
mine. My son doesn’t know anything because we don’t want worry to weigh him down.
My father doesn’t know anything about my illness because I don’t want to worry him
with my problems. So I don’t want to weigh down my father, I don’t want to weigh
down my son, I don’t want to weigh down my husband. (ID. 15)
For one participant, however, the illness became an occasion to recognise and
reclaim the needs and rights that were stifled for years by the pressure of gender
For thirty years I endured ...I didn’t even realise I was enduring ...I accepted a life of
serving one, then the other and then another. Then, I said ‘‘That’s enough’’, with the
illness; I said that’s enough with all of this. How is it that you’ve already finished your
coffee while I still haven’t eaten my first course? (ID. 11)
Fear of losing the traditional social role
The implications of the disease, particularly fatigue, constitute a challenge for a
woman’s identity because of its impact in modifying the participants’ self-concept
and self-images, centred on their roles and their domestic duties:
I am obsessive about homework, I like cleaning, doing and undoing things, but
sometimes I realise that I am really tired ...I keep going on because I have to do it, but
if I was the person I was before, I’d just do it, and that’s that. (ID. 3)
For women with PBC, the difficulty in considering fatigue as a problem and in
distinguishing between ‘physiological’ fatigue and ‘pathological’ fatigue frequently
depends on the level of performance required by the environment. The social roles of
mother, wife, daughter or daughter-in-law that women take on in different situations
and perceive they must fulfil seem to preclude the possibility of claiming that they are
tired and acting as such within the family context:
Sometimes I’m very tired; nevertheless, I don’t spend the whole day at home sleeping.
I run around all day like a madwoman, and then of course I’m tired. Maybe someone
else at my place would have even more energy ...I do things, and I do a lot even
compared to my friends. (ID. 5)
I start feeling tired in the morning, but I have to make breakfast for my husband, then
for my son, then I begin with the cleaning, then I take my daughter to school. When I
come back, maybe my in-laws need me, and at 11:30 am I go and pick up my daughter.
I take her back at 2 pm, and then my other son comes home. At 6 pm, I pick up my
daughter again, and I get to 9 pm when I fall asleep. By evening, I’m totally exhausted.
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My in-laws, for example, who live downstairs, call me all the time, I’ve no idea how
many times I go up and down those stairs. (ID. 3)
For some participants, the difficulties in attributing a symptomatic meaning to
fatigue are linked to the fact that they have ‘two jobs’ – unpaid homemaker and wage-
worker. These difficulties occur not only in the prediagnostic phases, as in the first
quote of the following excerpts, but also after the diagnosis, as in the second one:
Before the diagnosis, I didn’t think that feeling tired was caused by the liver because I
always had ‘‘two jobs’’. I had a job at the office, and then I had to take care of my
husband in the hospital, my daughter and my family in general ...I always explained
tiredness with all the work I was in charge of (ID. 13)
The tiredness depends also on the job that I do. I’ve got two part-time jobs. In the
morning it’s a job that requires concentration, in the evening I clean offices ...then
when I’ve got a whole day of work behind me, the toughest part of work awaits at
home, when I’m already exhausted. (ID. 22)
As a result, most women with PBC seem to not accept the consequences of their
symptom by denying their own right to feel or appear tired:
I’m very resilient, and perhaps that’s a limitation because I don’t listen to my body too
much ...but I keep going because I’ve got my daily schedule children, my
husband, the family ...all those things connected to family management, that’s
essential. And then my job, of course, and everything needs to fit in. (ID. 5)
Patients share a belief in perfectionism and minimise the effects of fatigue to
preserve their roles within the family. For this reason, most tend to portray images of
themselves as ‘indefatigable women’ to avoid the risk of being labelled as emotional
or fearful. This effort brings them to the point of self-sacrifice and refusal of
I feel tired, but I’m strong and I react. I’m not one of those people who just lie down in
bed and are scared or don’t do anything. I do everything. I don’t take care of myself,
and what needs to be done ‘round the house, I get it done. (ID. 20)
As we have already noticed, their effort to appear ‘strong’ and normal has a
paradoxical consequence because it reduces the possibility for others to perceive the
illness impact and it favours a nonacceptance of their sick-role.
Theme 3: Need for biographical continuity
The third theme concerns the way PBC patients build up their identities as ill
persons. This process is the consequence of the ‘double normalisation’ that was
highlighted in the first two themes. One is linked to the delegitimation by their
families, which serves to convince patients that the illness has no effective
consequences on their life. The second is the normalisation of fatigue that the
patients themselves make by attributing the symptom to the many duties connected
to their social roles.
As a consequence of this double normalisation process, some women construct
their identities through the denial or minimisation of their status as chronically ill
patients, emphasising the small impact that the illness has had on their lives or
exalting their autonomy:
It’s as if PBC didn’t exist ...nothing if I didn’t have it ...the indifference, or just
the habit, or perhaps just learning to live with it, as I do. (ID. 6)
10 L. Montali et al.
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I don’t feel ill, I feel a couple of years older because I can’t do everything I want
to do ...but I’m very active, I do this and then, I do that, and everything goes away.
(ID. 4)
Many participants stated that the disease has not caused any changes in their
lives and indicated that the identity crisis that is usually associated with chronic
conditions had not occurred. These women seemed to show nonacceptance of their ill
selves, as if they did not allow the illness to cause discontinuity in their lives. We can
observe a circular process: this behaviour is the consequence of delegitimation by
others, but it also favours the fact that they recognise a limited impact of PBC on
patients’ identities and compromises the possibility of negotiating new roles as it
appears that women are not asking for them.
The need for continuity, which is threatened by the illness, is also expressed by
the interpretations of the disease as psychosomatic and connected to women’s
lifestyles. PBC is represented and conceptualised as a consequence of stress, which is
related to the female condition, with reference to gender stereotypes and role
Stereotypes are related to women’s sensibilities and emotions, which participants
believe make them particularly vulnerable to stress:
PBC affects women more than men because they tend to be, by nature, more influenced
by their mood; we accumulate more stress. Men are more rational; we are more
emotional. In general, women are emotionally more fragile, so it may happen that a
woman will have a nervous breakdown and that she will feel the stress of life, of work,
of family, of children with greater intensity than a man would. (ID. 7)
In terms of role expectations, participants accord women the sole, burdensome
responsibility of caring for other family members, which makes the management of
life at home particularly stressful for them:
I thought that PBC was due to stress women, we take responsibility for so many
things in the family’s the psychological and affective load we have to carry, even
simply in terms of organising things at home. My husband doesn’t think about these
things. If a woman has a greater workload, eventually it’ll come out. It’s going to affect
some part of her body, which will then pay the price. (ID. 19)
Stress is connected to one’s way of life. My husband leaves the home all happy and
relaxed, a woman, on the other hand, is more stressed because even if she works,
afterwards, she’s got all the rest. And there aren’t a lot of men who help around the
house. I’ve got one that doesn’t do anything. He takes me to the supermarket, but he
stays outside while I go inside and do the shopping because Saturdays and Sundays are
‘‘rest days’’ for him. I think it’s also because of stress that one gets these diseases. (ID. 3)
Stress, therefore, seems to be represented as the price for being ‘good women’.
On the one hand, this idea reflects gender inequality, which emerges precisely in
relation to the workload that women take on at home. On the other hand, the
reference to predominantly female stress shows how the illness is constructed in
continuity with the women’s previous selves, so the causal attribution for the disease
seems to support the women’s biographies.
This analysis identified three themes that characterise the experience of women with
PBC. The three themes can be interpreted in terms of a process because they are
Psychology and Health 11
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interrelated and share a dynamic of normalisation. In the first theme, the
delegitimation of the illness in the family context emerges; the patients seem to be
normal, so they are normal. As a consequence, both the impact of the illness and its
consequences on patients’ lives are contested. The second theme shows how the
delegitimation process impacts women’s status; it implies obstacles in negotiating
social role changes and a normalisation of fatigue. Understanding the systematic
disconfirmation within the family context and the subsequent fear of rejection and of
losing women’s traditional social roles helps to make sense of the third theme: the
identity positioning of the women interviewed in terms of biographical continuity;
they are the same normal women.
The main results from this study will be discussed with relation to the literature.
With reference to delegitimation, our study extends the current findings in the
literature, as it shows that delegitimation can even affect people who have a
medically recognised diagnosis for their condition; therefore, a diagnosis is not
sufficient to give legitimacy to the illness experience in a social context. The
delegitimation characterised the experience of patients of all histological stages: even
women at the third or fourth stage of the disease, despite their risk for a liver
transplant, showed difficulties in getting recognition from their family members and
in negotiating role changes. Instead, in the case of PBC, the crucial factor that seems
to favour delegitimation is the combination of two illness features: its invisibility and
the subjectivity of fatigue. Because our data are not conclusive, this aspect is worthy
of further investigation.
According to literature findings (Asbring & Narvanen, 2002; Lonardi, 2007;
Werner & Malterud, 2003) patients develop two main strategies to cope with
scepticism and underestimation of their condition. In some cases, patients struggle to
achieve appropriate appearance in order to convince their doctors that their illnesses
are real and physical (Werner & Malterud, 2003). In other cases, patients use a
‘passing strategy’ (Goffman, 1963; Lonardi, 2007), maintaining secrecy and
pretending to be normal to prevent the stigma associated with scepticism. For
example, Asbring and Narvanen (2002) identified three main ways people with
chronic fatigue syndrome and fibromyalgia use to avoid stigma: information control,
withdrawal from social life and concealing the illness. Similarly, women with PBC
seem to manage delegitimation and the challenges that PBC adds to their social
identity by trying to appear adequate within the social context’s expectations of
normality and by avoiding the concrete implications of their illness. This strategy is
enacted through four main behaviours. Because of their fear of rejection, patients
tend to avoid expressing and sharing PBC-related experiences and emotions with
others, and they tend to always prioritise the demands of other family members over
their own needs. Because of their fear of losing the recognition associated with
traditional female roles, which are linked to domestic duties, participants tend to
present images of themselves as strong and indefatigable women and contribute to
the process of minimisation or normalisation of fatigue. This last point may be
related to the fact that the scepticism of significant others may lead women with
ambivalent symptoms to call into question the authenticity of their own experience
and to develop uncertainty about their feelings (Dickson, Knussen, & Flowers,
2007a; Werner, Isaksen, & Malterud, 2004), for instance, by attributing their
symptoms to stress and to the burden of caregiving (Arroll & Senior, 2007; Lea,
1994). This lack of complaints about fatigue is in line with findings from Al-Harthy
et al. (2010), who reported a disparity between verbally reported fatigue and formal
12 L. Montali et al.
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evaluations of fatigue levels through self-reporting questionnaires for PBC patients.
Verbal reports revealed a greater fatigue’s impact than formal evaluations. The
authors suggest that the reluctance of patients to report fatigue may reflect their
capacity to cope, and consequently not recognise, soft symptoms or patients’ ideas
that doctors do not have sufficient time to focus on the symptom of fatigue.
The overall consequence of the strategy of avoiding the concrete implications of
the illness is that patients do not endeavour to legitimise their chronic conditions or
to achieve a sick-role. According to Ware (1999), our results show an internalisation
of family expectations and a minimisation of the disruptive effects of the illness to
avoid the risk of being isolated or rejected by others. This highlights the role played
by the patients in the delegitimation process. Their choice of a passing strategy is
related to illness invisibility that makes secrecy viable, and may depend on social
expectations. In particular, women might be in danger of having their complaints
interpreted as whining and attributed to a psychological problem, more than to a
physical one (Werner & Malterud, 2003). The consequence is that this strategy
paradoxically contributes to delegitimation because it keeps the illness invisible
for others. PBC women make a full understanding of the illness more difficult for
their family members and consolidate the stereotypes and the expectations they
The effort to preserve their everyday lives shows the difficulties that patients
experience in constructing new social identities that are consistent with their sick
status. Therefore, as shown in our third theme, patients maintain a continuity of
their sense of selves, which is manifested in acting as if PBC did not exist in the hope
that they will continue to be considered ‘the same woman as always’ and in
explaining PBC as a consequence of women’s lifestyles. This finding shows that even
if women are affected by a chronic condition, they do not allow the illness to
introduce a discontinuity or significant changes in their personal life trajectories due
to their concerns about losing their social status. Therefore, the experience of women
with PBC appears to be different from those of patients with other chronic illnesses.
Our participants do not appear to be engaged in a process of biographical disruption
and reconstruction (Clarke & James, 2003; Larun & Malterud, 2007; Ware, 1992) as
a consequence of the identity crisis that is characteristic of a chronic illness (Corbin,
2003). Our results are consistent with findings of previous studies which found that
women avoid the potential negative consequences of risking their familial relation-
ships by trying to confirm their previous identities. As Lea (1994) suggested,
‘accepting being ill depends on the costs and benefits of the sick role and whether the
symptoms experienced are considered to others to constitute an illness’’’ (p. 491). The
experience of women with PBC seem to be in line with Frank’s (1993) idea of ‘no new
self’ and with the concept of biographical reinforcement proposed by Carricaburu
and Pierret (1995). Both referred to how key identities, particularly some previously
existing components of identity, may be reinforced after a diagnosis to emphasise
elements of continuity (Wilson, 2007). In our study, these elements are linked to the
socially recognised representation of womanhood, as it constitutes a key identity
resource and conveys symbolic meanings about what are the requirements to be a
good woman. Accordingly, patients give greater value to their duties as women than
to their rights as chronic ill persons. This behaviour is not impeded by their social
context, as it enables family members to maintain the privileges that they previously
enjoyed. Overall, our results confirm the interdependence between illness, identity
and structures of power (Joffe, 2002). Furthermore, our study clearly indicates that
Psychology and Health 13
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socially constructed gender roles and expectations (Richman, Jason, Taylor, & Jahn,
2000), linked to gender inequalities and discriminations inside the family and the
society, are reflected in women’s illness experience (Milliken & Northcott, 1996;
Wilson, 2007). Data from this study also show the extent to which power
differentials between male and female social roles influence conceptual and
interpretative models of symptoms, such as fatigue, as well as the definition of
one’s gender identity. The archetypal feminine caring role (Ussher & Sandoval,
2008), which prescribes women to be the principal family caregiver, results in over-
responsibility, internalisation of problems, self-sacrifice and the absence of self-care
(O’Grady, 2005).
There are important practical implications of this research. Our results highlight
that patients’ physical and emotional well-being risk damage, as they end up
forsaking legitimate reappropriation and reclamation of their feelings and needs. For
these reasons, it is important to give women the opportunity to speak about their
illness to validate their feelings, acknowledge the truth of their experience and offer
them support. Giving patients the information that they need to appreciate and
evaluate their ambiguous symptoms and to find understanding within their social
context is equally important.
This study has some limitations. The analysis focused mainly on the psycho-
social consequences of the illness, and did not deepen in the knowledge of the bodily
experience of patients. This is due to the fact that the bodily experience of symptoms
in PBC patients, and particularly their fatigue experience, had been previously
explored (Jorgensen, 2006). In our opinion, by focusing on psycho-social elements,
we highlighted how the social dimensions of illness and its bodily experience are in a
relationship of mutual influence. As our results show, fatigue perception, and
symptoms perception more generally, cannot be investigated without analysing their
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... Sufferers of contested illnesses often experience the existence of their illness being questioned or denied (Armentor, 2017;Dickson et al., 2007;Nettleton, 2006). Their symptoms are perveived to be psychosomatic, and they are offered psychological diagnoses Glenton, 2003;Kornelsen et al., 2016;Lillrank, 2003;Ware, 1992); their motives are questioned and their needs are unrecognized (Dickson et al., 2008;Montali et al., 2011;Richardson, 2005); and their rights to compensation and care are denied (Dumit, 2006;. Experiences of this kind can illustrate epistemic injustice: epistemic asymmetry between the people suffering from contested illness and the decisionmaking authorities (e.g., physicians) can lead the authorities to unrecognize and discredit suffers' knowledge for instance, because of their distrust in sufferers (Blease et al., 2017;Buchman et al., 2017;Fricker, 2007). ...
... Although extant research shows that delegitimation is manifested on various levels, less is known about how people suffering from contested illnesses explain why they are delegitimized by other people. Some research shows that sufferers attribute perceived delegitimation to others' lack of information or knowledge (Armentor, 2017;Kornelsen et al., 2016), the invisibility of symptoms (Dickson et al., 2007;Montali et al., 2011), and the lack of official recognition of their disease (Dickson et al., 2008). Research on this topic is needed. ...
... The respondents thought that such a lack of understanding was related to the invisibility of their symptoms, uncertainty regarding the aetiology of symptoms, and laypersons' and authorities' lack of experience and knowledge. Perceptions of these kinds have been identified also among people suffering from other contested illnesses (Armentor, 2017;Dickson et al., 2007Dickson et al., , 2008Kornelsen et al., 2016;Montali et al., 2011). Laypersons' perceived lack of understanding was an ambivalent experience for the respondents: on the one hand, they understood others' struggles, but on the other hand they hoped that others would have just believed them, which could have helped them to maintain their moral character (see Åsbring & Närvänen, 2002). ...
Full-text available
Purpose Little is known about the delegitimation experiences of people who associate their health problems with the indoor air quality of their homes (i.e., indoor air sufferers). From other contexts, it is known that people suffering from contested illnesses frequently report delegitimation from authorities and laypersons. Therefore, we analysed delegitimation experiences among indoor air sufferers, focusing on how they explain why others delegitimize them. Method Two types of qualitative data—semi-structured interviews with eight people and essays written by 28 people—were subjected to a thematic analysis. Results Thematic analysis revealed three themes: 1) lack of understanding; 2) others’ lack of morality; and 3) social discrimination and inequality. Conclusion This study demonstrates that indoor air sufferers are vulnerable as individuals and as a group, and suggests that authorities working with people suffering from indoor air problems in homes must pay more attention to sufferers’ ability/willingness to trust people and the system responsible for their care.
... In the EQ-5D-5L, females reported a significantly lower UI-value, as well as a lower score in the subdomain pain/discomfort compared to males indicating that women perceive and experience HRQL impairment stronger than men. Similar findings have been reported previously in other chronic liver diseases [21] and cirrhosis [19] and this is likely related to a different selfperception of the body and general health [23]. ...
... These findings differed from observations in the larger analysis in the UK-AIH cohort, when patients with AIH and PBC or PSC overlap exhibited a lower EQ-5D-5L UI-value [12]. These differences can be multifactorial and we have previously observed a country-specific impact between the UK and Germany when exploring HRQL in NAFLD [23]. ...
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Background Autoimmune hepatitis (AIH) is a rare chronic liver disease. Impaired health-related quality of life (HRQL) contributes to the overall disease burden. At current, only limited data related to the impact of treatment response on HRQL are available. Objective The aim of the study was to determine the impact of biochemical remission on HRQL. Methods Patients with AIH were prospectively enrolled between July 2018 and June 2019. A liver disease-specific tool, the chronic liver disease questionnaire (CLDQ) and the generic EQ-5D-5L were used to quantify HRQL. Treatment response was assessed biochemically by measurement of immunoglobulin G, ALT and AST. The cohort was divided into two groups according to their biochemical remission status in either complete vs. incomplete remission. Clinical as well as laboratory parameters and comorbidities were analysed using univariable and multivariable analysis to identify predictors of poor HRQL. Results A total of 116 AIH patients were included (median age: 55; 77.6% female), of which 9.5% had liver cirrhosis. In this cohort, 38 (38.4%) showed a complete and 61 (61.6%) an incomplete biochemical remission at study entry. The HRQL was significantly higher in patients with a complete as compared to an incomplete biochemical remission (CLDQ overall score: 5.66 ± 1.15 vs. 5.10 ± 1.35; p = 0.03). In contrast, the generic EQ-5D-5L UI-value was not different between the groups. Multivariable analysis identified AST ( p = 0.02) and an incomplete biochemical remission ( p = 0.04) as independent predictors of reduced HRQL (CLDQ total value). Conclusion Patients with a complete biochemical remission had a significantly higher HRQL. Liver-related quality of life in patients living with AIH is dependent on the response to immunosuppressive treatment.
... Relatedly, Montali et al. (2011) found that women with primary biliary cirrhosis (a rare chronic liver disease that mostly impacts women) struggled to express their needs and ask for assistance due to sexism and gendered expectations compounded with chronic illness stigma. Their participants said that loved ones and doctors minimized their RD and trivialized their symptoms while expecting them to put their own needs aside to serve their family members and do household tasks. ...
... Their participants said that loved ones and doctors minimized their RD and trivialized their symptoms while expecting them to put their own needs aside to serve their family members and do household tasks. Since our sample is primarily women, these findings from Montali et al. (2011) are helpful in contextualizing how gender norms and sexist beliefs likely impacted some of our participants' experiences of not being believed and feeling inadequate for not being able to complete household labor. ...
Objective: There are more than 6,000 known rare diseases (RDs), which are often serious, chronic, and progressive conditions. Cumulatively, having a RD is actually common, impacting an estimated 300 million people worldwide. While the stigmatization of some specific RDs has been studied, examining stigma in a large sample of many RDs allows for a broader understanding of patterns. Design: We used inductive qualitative content analysis to analyze survey responses to an open-ended question about challenges of living with a RD among 384 people with 178 distinct RDs. Results: We identified eight codes which were organized under the following three themes: structurally enacted, interpersonally enacted, and felt stigma. People with RDs experience structurally enacted stigma in the forms of healthcare stigma, education/workplace stigma, and an overall lack of accessibility. They also face interpersonally enacted stigma, including insufficient social support, a lack of understanding from others, and capitalist norms of productivity and self-sufficiency. Additionally, they experience felt stigma related to shame and the pressure to pass as able-bodied. Conclusion: Possible solutions to RD stigma include increased education about RDs for healthcare professionals, a societal shift towards prioritizing accessibility, strengthened legal protections for disabled people, and expanded disability justice-focused community organizing.
... Fatigue was also a major issue and whilst well-recognised in primary biliary cholangitis, it is less acknowledged in autoimmune hepatitis [26]. The trivialisation of fatigue has been well described in primary biliary cholangitis [27] with the lack of correlation between symptoms and biochemical test results being a source of frustration in both diseases. Understanding the mechanisms underpinning fatigue, enabling targeting of treatments, remains a challenge in autoimmune liver disease generally and should be a focus of ongoing research. ...
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Background Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects. Aims This study explored patients’ experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy. Methods An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019–January 2020. Semi-structured interviews were conducted with 13 patients to further explore their support networks, treatment experiences and health priorities. Descriptive and quantitative analyses were undertaken using R and free text responses were subject to thematic analysis. Results In total, 270 survey responses were received (median age 55 years and 94% female). Perceived medication side-effects were reported by 66% (169/257) and 73% responded negatively about their experience of corticosteroids. The majority (62·3% [(109/175]) would ‘definitely’ or ‘probably’ consider clinical trial participation to improve their care. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Interview and survey data suggested that major issues were stigma, loss of control and fatigue. Conclusions This study provides insights into the realities of living with autoimmune hepatitis with clear issues around lack of support networks, need for patient empowerment and stigma surrounding liver disease. Patient priorities are better therapies to slow disease progression, avoiding corticosteroids and minimising side-effects. Patient willingness to participate in trials suggests that they are achievable provided they have the right design and clinical endpoints.
... Patients described delegitimation of their experience, lack of consideration of needs, and trivialization of fatigue. 16,18 Patients with cirrhosis felt disappointed because treatment options were limited due to their late diagnosis. 77,80,88 They described more limitations in their daily living due to disease progression and symptoms than patients with less severe liver diseases, which resulted in a feeling of loss of self and loneliness. ...
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Background and aims In an attempt to uncover unmet patient needs, this review aims to synthesise quantitative and qualitative studies on patients’ quality of life and their experience of having a liver disease. Methods Three databases (CINAHL, Embase, and PubMed) were searched from January 2000 to October 2020. The methodological quality and data extraction of both quantitative and qualitative studies were screened and appraised using Joanna Briggs Institute instruments for mixed method systematic reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A convergent, integrated approach to synthesis and integration was used. Studies including patients with autoimmune and cholestatic liver disease, chronic hepatitis B and C, nonalcoholic fatty liver disease and nonalcoholic steatohepatitis, cirrhosis, and hepatocellular carcinoma were considered. Results The searches produced 5,601 articles, of which 95 (79 quantitative and 16 qualitative) were included in the review. These represented studies from 26 countries and a sample of 37,283 patients. The studies showed that patients´ quality of life was reduced. Unmet needs for information and support and perceived stigmatization severely affected patients’ quality of life. Conclusion Our study suggests changes to improve quality of life. According to patients, this could be achieved by providing better education and information, being aware of patients’ need for support, and raising awareness of liver disease among the general population to reduce misconceptions and stigmatization. Lay summary Regardless of aetiology, patients with liver diseases have impaired quality of life. This is associated with disease progression, the presence of symptoms, treatment response, mental, physical, and social factors such as anxiety, confusion, comorbidities, and fatigue, and limitations in daily living, including loneliness, low income, stigmatization, and treatment costs. Patients highlighted the need for information in order to understand and manage liver disease and awareness and support from healthcare professionals to better cope with the disease. In addition, there is a need to raise awareness of liver diseases in the general population to reduce negative preconceptions and stigmatization. Registration number PROSPERO CRD42020173501.
... Over the years, health communication scholars have realized the far-reaching effects of illness on a patient's identity. Research has found that illness can cause a patient to re-define oneself (Arrington, 2003;Charmaz, 1987;Harwood & Sparks, 2003;Montali, Frigerio, Riva, & Invernizzi, 2011). Research has looked at how patients have enacted their identity during illness (Nuttbrock, 1986) and how illness can change individuals' social categorizations and ultimately, their social network (Darrow, Speyer, Marcus, Ter Maat, & Krome, 1998;Kundrat & Nussbaum, 2003). ...
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The body performs health in complex and contested ways, shaped by cultural dynamics, understandings, and interpretations (Airhihenbuwa, 1995). Typically read through the dominant ideologies of health, the constitution of the healthful body is often biomedically driven, and situated within the materiality of structures (Dutta, 2008). The dominant systems of knowing and understanding health act as the borders of what can and cannot constitute health meanings; these borders simultaneously reify and reproduce the structures that constitute the terrains of social organizing. The healthful body is described through a singular lens of normative health understandings and behaviors. Migrant health is often understood through the lens of the host culture, ignoring social, cultural and political economy of migrant life; more specifically for migrants that are constructed for exclusion and temporariness within the borders of the host country. The margins represent these exclusions, where the omission of cultural voices renders impossible alternative readings of what can constitute health meanings (Dutta, 2012). Whose voices are erased from contributing to dominant health narratives? How are these voices erased from dominant health organizing? These critical questions are the starting point for generating alternative health knowledge that remains in the margins of health meanings.
... It is imperative that more qualitative or mixed methods studies be conducted to move the field of PROs in PBC and PSC forward. We identified only three qualitative and three mixed-methods articles that described the experiences of patients with PBC (12,(32)(33)(34)(35)(36) ; astonishingly, no qualitative studies have been published describing the experiences of patients with PSC. We acknowledge that there may be a bias against publishing qualitative studies, and researchers may not be incentivized to conduct these types of works. ...
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Primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) are associated with decreased health‐related quality of life and debilitating symptoms. These experiences can be defined as patient‐reported outcome (PRO) concepts and measured using PRO instruments. We identified all PRO concepts and instruments used in the PBC and PSC literature. This systematic review identified PBC and/or PSC studies from January 1, 1990, to May 6, 2019, that measured at least one PRO concept. Study population, design, PRO concept, PRO instrument, and validation data for PRO instruments were investigated. We provided descriptive statistics of PRO concepts and instruments used, stratified by population type. Use of PRO concepts and instruments were assessed over time. The search yielded 318 articles (69% in PBC, 18% in PSC, 13% in both, and 24% in drug trials). Forty‐nine unique PRO concepts were identified. The five most common PRO concepts included pruritus (25%), fatigue (19%), broad health‐related quality of life (16%), gastrointestinal adverse events (6%), and physical adverse events (6%). Only 60% of PRO concepts were measured with a PRO instrument, most of which were nonvalidated visual analogue or numeric rating scales. Only three of 83 PRO instruments were developed with feedback from the target populations (one for PBC, one for PSC, and one for both), and only six documented any psychometric testing in the target populations. Use of PRO instruments increased over time from 30% in the 1990s to 67% by 2019. Conclusion: The overwhelming majority of PRO instruments used in PBC/PSC were nonspecific and lacked patient validation or empirical justification. Significant opportunities exist to use qualitative methods to better understand patient experiences, and translate this knowledge into meaningful, patient‐driven study outcomes.
... ' judgments of their pre-diagnostic experiences, specifically concerning their moral judgments of their physicians' actions.Montali, Frigerio, Riva, & Invernizzi (2011) focused on general illness experiences of a group of women, taking a gender-specific approach in their analysis, in which quotes about interactions with health care practitioners (HCPs) fell under the larger identified theme of "delegitimation of women's experience". Mooney (2014) focused on determining the informational needs of a grou ...
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Objective: The diagnostic odyssey faced by many rare disease (RD) patients is often characterized by significant diagnostic delay, frequent misdiagnoses, repeated instances of negative interactions with healthcare practitioners, and intense psychological distress. RD patients also score lower on measures of health-related quality of life than patients with more common conditions. The purpose of this preliminary investigation was to determine if the research literature would show that self-reported healthcare narratives of people with rare disease would include common themes and characteristics associated with trauma. Methods: Study procedures were informed by past methodological procedures for meta-analysis of qualitative studies. Database searches and several rounds of review ultimately yielded 17 studies which collected and reported findings on the self-reported healthcare experiences of RD patients. The contents of these studies were evaluated for the presence of common themes and characteristics of trauma as defined by the American Psychological Association. Results: Common themes and characteristics of trauma were found in the published descriptions of the rare disease patient odyssey throughout the periods before diagnosis, at the time-of-diagnosis, and after diagnosis, including repeated, distressing interpersonal interactions with healthcare providers and evidence of lasting psychological harm. Post-traumatic stress symptoms, including avoidance and hypervigilance, were reported, as was the potential for post-diagnosis healthcare encounters to re-traumatize some RD patients. Conclusion: Future research should focus on defining and measuring the incidence, contributing factors, and impacts of psychologically harmful RD patient-provider interpersonal interactions and their potential for traumatization. Best practices will need to be determined for ways in which health care providers can best interact with RD patients to avoid potential traumatization and re-traumatization.
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[Handout of key takeaways from poster presented at 2019 Bastyr Research Symposium] /// Common Themes and Characteristics of Trauma in the Healthcare Experiences of Patients with Rare Disease: A Literature Analysis /// Student: Jessica Chrivoli /// Faculty Advisor: Naomi Lester, PhD /// Objective: The diagnostic odyssey faced by many rare disease (RD) patients is often characterized by significant diagnostic delay, frequent misdiagnoses, repeated instances of negative interactions with healthcare providers, and intense psychological distress. RD patients also score lower on measures of health-related quality of life than patients with more common conditions. The purpose of this preliminary investigation was to determine if the research literature would show that self-reported healthcare narratives of people with rare disease would include common themes and characteristics associated with trauma. /// Methods: Study procedures were informed by past methodological procedures for meta-analysis of qualitative studies. Database searches and several rounds of review ultimately yielded 17 studies which collected and reported findings on the self-reported healthcare experiences of RD patients. The contents of these studies were evaluated for the presence of common themes and characteristics of trauma as defined by the American Psychological Association. /// Results: Common themes and characteristics of trauma were found in the self-reported healthcare experiences of individuals with a variety of rare diseases, throughout the diagnostic odyssey and beyond, including repeated, distressing interpersonal interactions with healthcare providers and evidence of lasting psychological harm. Post-traumatic stress symptoms (PTSS), including avoidance and hypervigilance, were identified in the self-reported experiences of RD patients in half of the reviewed studies. Three quantitative studies specifically measured PTSS in RD patients, and all found significant results. /// Conclusion: Further research is needed to understand the potential traumatic impact of harmful interpersonal experiences between patients and their providers, in order to inform prevention and intervention efforts, and determine best practices to avoid harm.
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Background: Many patients with primary biliary cirrhosis (PBC) are asymptomatic at the time of diagnosis. However, because most studies of asymptomatic PBC have been small and from tertiary centres, asymptomatic PBC remains poorly characterised. Aims: To describe the features and progression of initially asymptomatic PBC patients. Methods: Follow up by interview and note review of a large geographically and temporally defined cohort of patients with PBC, collected by multiple methods. Results: Of a total of 770 patients, 469 (61%) were asymptomatic at diagnosis. These patients had biochemically and histologically less advanced disease than initially symptomatic patients. Median survival was similar in both groups (9.6 v 8.0 years, respectively) possibly due to excess of non-liver related deaths in asymptomatic patients (31% v 57% of deaths related to liver disease). Survival in initially asymptomatic patients was not affected by subsequent symptom development. By the end of follow up, 20% of initially asymptomatic patients had died of liver disease or required liver transplantation. The majority of initially asymptomatic patients developed symptoms of liver disease if they were followed up for long enough (Kaplan-Meier estimate of proportion developing symptoms: 50% after five years, 95% after 20 years). However, 45% of patients remained asymptomatic at the time of death. Conclusions: Although asymptomatic PBC is less severe at diagnosis than symptomatic disease, it is not associated with a better prognosis, possibly due to an increase in non-hepatic deaths. The reasons for this are unclear but may reflect confounding by other risk factors or surveillance bias. These findings have important implications for future treatment strategies.
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The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.
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The author examines the specific contribution that social representations research has made to health psychology. In particular, the approach highlights the symbolic, emotive and social aspects of how lay people make meaning of facets of health and illness, and emphasizes the importance of the evolution of these meanings. Empirical work on health and illness is used to cast light on the specific workings of social representations and on the enrichment of the health field offered by this naturalistic perspective. Distinctions are drawn between the social representations approach and other social constructionist approaches in the health field. In addition, the differentiation between social representations and more mainstream approaches to health issues is examined. Primarily, the social representations approach eschews the notion of human thought as analogous to information processing, with the attendant individualist, cognitivist and rationalist assumptions, and recognizes the importance of non-verbal material in the study of the human psyche.
Woman's Relationship with Herself explores the relationship women have with themselves and demonstrates how this relationship is often dominated by debilitating practices of self-surveillance. Employing Foucault's notion of panoptical power, Helen O'Grady illuminates the link between this kind of self-surveillance and the broader mechanisms of social control, arguing that these negative practices prevent women from enjoying a satisfying, affirming relationship with themselves. Cultural factors that render women vulnerable to dissatisfying self-relations are identified and analysed and, drawing on the insights of Foucault, feminism and narrative therapy, the possibilities for developing a more empowering relationship with the self are examined. This innovative contribution to feminist debates about gender and the self will be of interest to students and researchers in social psychology, feminist psychology, mental health studies and gender studies, and to practitioners in psychological therapies and counselling psychology.
The article discusses the experiences of women facing infertility and infertility treatment in Bulgaria with a focus on identity construction. A theoretical framework invoking an understanding of identity as a social and contextual phenomenon, contingent upon local interpersonal relations and cultural meanings, informs our study. We use semi-structured interviews, which are analyzed using Interpretative Phenomenological Analysis. Using this method, we have identified the following overarching themes: Identity as Incomplete, Absent or Invisible; Identity as Present but Separate; Identity Shifts Through Dis/Embodiment; Identity as Nurtured and Nurturing. The study delineates the contextual identity shifts in the social and medical settings and the extent to which the women we interviewed experienced themselves as separate, autonomous and agentic. We discuss some of the possible interpretations of these findings, invoking the meanings and metaphors of the individual and the relational available in Bulgarian culture and societal values.
This study investigates the experience of women suffering from hypothyroidism. The course of hypothyroid disease is examined by applying and extending Anselm Strauss's theory of a chronic illness trajectory. Because the symptoms of hypothyroidism tend to be vague, subjectively experienced, insidious in onset, and cyclic in occurrence, many sufferers are required to engage in a process of "seeking validation"'for their illness in order to receive appropriate treatment. A grounded theory of seeking validation is described. Transcripts from semistructured interviews of 12 adult women were analyzed by the constant comparative method of grounded theory. This study will help hypothyroid sufferers to understand better the course of this disease and the nature of the validation process. Furthermore, this study will assist caregivers and families to achieve an empathic understanding of the illness from the sufferer's perspective.