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Critical Incidents in Anorexia Nervosa: Patients’ Perspective

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Abstract

Background Although social-emotional difficulties are believed play a key role in anorexia nervosa (AN), there is uncertainty regarding what these difficulties might look like. Previous research has largely focused on a “disease model” of social-emotional processing in AN with little attention paid to positive emotions and experiences. Therefore, the aim of the present study was to obtain a fuller picture of critical life events in AN. Methods Thirty-four participants aged 16-48 with current or past AN completed an online survey describing self-defined positive and difficult critical events.ResultsTwo major themes were identified in the descriptions of positive critical events: Moments of celebration, reflecting external focus, and Unexpected positive outcomes, revealing negative biases. Difficult events were broadly divided into included eating disorder (ED) related and Non-ED life events, involving discussion of relational conflict and feeling unsupported. DiscussionThe findings suggest that AN is largely characterised by negative emotionality and bias. However, people with AN can live rich lives with positive experiences, which reflect reduced self-focused attention and increased “big-picture” thinking. Moreover, people with AN may be open to have their negative expectations challenged through corrective experiences. Together these findings be useful targets for further clinical research.
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Critical Incidents in Anorexia Nervosa: Patients’ Perspective
Jenni Leppanen ( jenni.leppanen@kcl.ac.uk )
King's College London https://orcid.org/0000-0003-2814-4375
Lara Tosunlar
King's College London
Rachael Blackburn
King's College London
Steven Williams
King's College London
Kate Tchanturia
King's College London
Felicity Sedgewick
University of Bristol
Research article
Keywords: anorexia nervosa, critical events, positive experiences, dicult experiences, information processing bias, thematic analysis
DOI: https://doi.org/10.21203/rs.3.rs-81473/v1
License: This work is licensed under a Creative Commons Attribution 4.0 International License.  Read Full License
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Abstract
Background
Although social-emotional diculties are believed play a key role in anorexia nervosa (AN), there is uncertainty regarding what these diculties might look
like. Previous research has largely focused on a “disease model” of social-emotional processing in AN with little attention paid to positive emotions and
experiences. Therefore, the aim of the present study was to obtain a fuller picture of critical life events in AN.
Methods
Thirty-four participants aged 16-48 with current or past AN completed an online survey describing self-dened positive and dicult critical events.
Results
Two major themes were identied in the descriptions of positive critical events: Moments of celebration, reecting external focus, and Unexpected positive
outcomes, revealing negative biases. Dicult events were broadly divided into included eating disorder (ED) related and Non-ED life events, involving
discussion of relational conict and feeling unsupported.
Discussion
The ndings suggest that AN is largely characterised by negative emotionality and bias. However, people with AN can live rich lives with positive experiences,
which reect reduced self-focused attention and increased “big-picture” thinking. Moreover, people with AN may be open to have their negative expectations
challenged through corrective experiences. Together these ndings be useful targets for further clinical research.
Plain English Summary
Anorexia nervosa (AN) is a serious life threatening illness and diculties in emotional processing and social relationships are believed to perpetuate the
illness by increasing isolation. However, what these diculties might look like is uncertain. Furthermore, sole focus on such a “disease model” of AN has been
recently challenged as it fails to consider positive emotions and experiences, and thus the full human experience of someone with AN. This online study aimed
to address this by asking people with lived experience of AN about critical positive and dicult events. When describing positive critical events some
participants discussed moments of celebration which reected external focus and “big picture” thinking. Other participants discussed unexpected positive
outcomes which revealed some negative biases that were met with positive actions. Dicult critical life events largely included discussion of relational
conict and loneliness, which with some participants took place against the backdrop of the eating disorder. These ndings suggest that although AN may be
largely characterised by negative emotions and loneliness, this is not the full picture. Many participants described living rich lives with both dicult and
positive experiences and were open to have their negative expectations challenged with positive actions.
Background
Anorexia nervosa (AN) is a complex eating disorder (ED) characterised by malnutrition and very low bodyweight (American Psychiatric Association, 2013).
Theoretical models of AN have suggested that social-emotional diculties play an important role in perpetuating the illness (Fairburn, Cooper and Shafran,
2003; Wildes, Ringham and Marcus, 2010; Treasure and Schmidt, 2013). Such diculties are believed to lead to conict in social relationships, which can in
turn lead to increased isolation and create space for the ED to take over the persons life (Treasure and Schmidt, 2013; Treasure and Cardi, 2017). Although
many interventions have been developed targeting various aspects of social-emotional functioning in AN (Cardi, Tchanturia and Treasure, 2018), treatment
response remains a signicant challenge with only around 33% of patients reaching full recovery (Steinhausen, 2002, 2009; Abbate-Daga
et al.
, 2013;
Legenbauer and Meule, 2015). Therefore, further investigation of social-emotional processing in AN can help improve understanding of the illness and aid the
development of new interventions.
Over the years there has been a great deal of interest in examining social-emotional diculties in AN using experimental paradigms. Large scale meta-analytic
reviews of these studies report that people with AN have diculties in several areas of social-emotional processing, including emotion recognition, theory of
mind, and emotional expression (Oldershaw
et al.
, 2011, 2015; Caglar-Nazali
et al.
, 2014; Sedgewick
et al.
, 2019). However, more recent work with larger
sample sizes and utilising tasks with greater ecological validity have found that people with AN have no general diculties in explicit recognition of emotions
or complex theory of mind tasks (Adenzato, Todisco and Ardito, 2012; Dapelo
et al.
, 2015; Wyssen
et al.
, 2019). It has been suggested that previously reported
diculties in correct attribution of emotional states may be related to negative information processing biases in AN (Dapelo
et al.
, 2015; Ambwani
et al.
,
2016), indicating that there is still a great deal of uncertainty regarding social-emotional diculties in AN. Furthermore, over the past few years there have
been calls to examine positive emotions and experiences in AN, highlighting the importance of studying resilience, hope, and optimism rather than focusing
solely on diculties (Tchanturia
et al.
, 2015). At a time of uncertainty regarding the types of social-emotional diculties that people with AN might have, it
could be valuable to gain further insight by adopting different methods and approaches.
As outlined above, majority of previous work examining social-emotional processing in AN have been behavioural experiments or self-report studies. Such
quantitative work lacks the exibility and ability to capture multiple aspects of behaviour and experiences that people may have. In contrast, a qualitative
approach could provide unique insights into a variety of experiences and perspective on social relationships, which can further elucidate what social-
emotional diculties in AN might look like. The few qualitative studies in this area have documented that people with AN report diculties with emotion
expression, blocking or suppressing emotions, and in recognising their own emotions (Kyriacou, Easter and Tchanturia, 2009; Money
et al.
, 2011). Many also
reported oversensitivity to, or misinterpretation of, others emotions, xating on events or over-analysing the behaviour of others (Ison and Kent, 2010; Money
et
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al.
, 2011; Westwood
et al.
, 2016). However, most of these studies have focused on exploring specic aspects of social-emotional processing, such as
friendships or experience of emotions (Westwood
et al.
, 2016), or investigated patients’ views in the context of an intervention study (Money
et al.
, 2011). A
more implicit approach, examining the emotional experiences of those with lived experience of AN when discussing important life events, may help to further
illuminate social-emotional processing in AN and help identify new avenues for task development.
The aim of the present study was to explore important
positive
and
dicult
life events, whilst acutely unwell, among people with lived experience of AN. We
were specically interested in events involving other people, as this would allow us to gain insight into social relationships during the acute stage of illness.
Using the Critical Incident Technique (CIT; (Flanagan, 1954)), we sought to answer the following research questions:
1) What are the important events participants choose to describe?
2) What are the emotional themes associated with those important events?
3) What are the social relationships involved and how are they portrayed?
This study was exploratory in nature and therefore we did not seek to test a priori hypotheses. However, based on previous research outlined above, we did
have some expectations. As the ED is central in the life of a person with AN, we expected that many of the events would be centred around AN, involving
discussions of diagnosis and treatment.
Methods
1.1 Participants
Thirty-four participants completed the study. All participants were 16 years old or older with current or history of AN. The mean age of the sample was 26.43
(SD = 8.48) and on average participants reported having been 16.97 (SD = 5.50) years old when they were diagnosed with AN. Twenty-eight participants were
female, four participants were male, and one person was non-binary. Most participants reported being single (N = 29), two people reported living with a partner,
one person was married, one was in a civil partnership, and one was separated. Thirty-two participants were of white ethnicity, one participant was of mixed
ethnicity, and one participant reported being of other, non-specied ethnicity.
Diagnosis was conrmed by asking participants if they had a diagnosis of AN and who diagnosed them (psychiatrist, psychologist, general practitioner,
other). All participants reported having been diagnosed with AN, ten of whom considered themselves to be recovered (REC). Twenty participants reported
having been diagnosed by a psychiatrist, 12 by their general practitioner, one by a clinical nurse specialist, and one by a clinical psychologist. On average,
participants reported BMI below 18.5 (M = 18.31, SD = 3.13), but those who considered themselves recovered reported numerically higher BMI (M = 20.58, SD
= 1.05) than those with current AN (M = 17.58, SD = 3.17). Additionally, on average participants reported ED symptomatology, as measured by the Eating
Disorder Examination Questionnaire, that was more than double of that reported by healthy individuals in the community (M = 3.25, SD = 1.72, (Fairburn and
Beglin, 1994)). Participants who reported being recovered reported numerically lower levels ED symptomatology (M = 1.48, SD = 0.94) than those with current
AN (M = 3.93, SD = 1.34). Twenty-three participants also reported having other diagnoses in addition to AN, most common of which were depression (N = 10,
43.48%), anxiety (N = 8, 34.78%) and obsessive compulsive disorder (N = 7, 30.43%). For further details please see Supplementary Table 1.
Participants were recruited through online adverts on social media (Twitter, Facebook) and from ED charity (BEAT) website. As the study took place online, all
participants were required to complete an online consent form prior to completing the study. The study was approved by the King’s College London Psychiatry,
Nursing and Midwifery Research Ethics Subcommittee, United Kingdom (HR-19/20-13004). All procedures were conducted in accordance with the latest
version of the Declaration of Helsinki (2013).
1.2 Critical incident technique
Participants were asked recount critical positive and dicult critical situations or events they have experienced while acutely ill using the CIT (Flanagan,
1954). The CIT is an effective qualitative research technique used to systematically collect observations of signicant events of which the person has rst-
hand experience. CIT has been used in numerous elds, including psychology, medicine, business, employee performance appraisal, and marketing
(Buttereld
et al.
, 2005; Chou
et al.
, 2016; Durand, 2016; Hwang and Seo, 2016; Santha
et al.
, 2016; Fridlund, Henricson and Mårtensson, 2017). Therefore, we
used the CIT in the present study to enable us to reach our aims and answer our research questions.
The CIT is typically used as a semi-structured interview, but here it was adapted to questionnaire format (Supplementary materials) to make the study more
accessible and enable wider recruitment of participants. Participants were rst asked to identify the event they wished to discuss and describe what was
particularly positive or dicult about it. They were then asked for further details about the event, including what happened before and during the event, what
the consequences of their actions were, what the other people present during the event were doing, and what the consequences of those peoples actions were.
1.3 Qualitative data analysis
Participants’ responses to the CIT were subject to thematic analysis (Braun and Clarke, 2006). The thematic analysis was conducted by two authors, JL and
FS. Thematic analysis approach was chosen because it is primarily used to identify reoccurring similarities and differences in the narratives. In other words,
this approach allowed data from multiple participants to be examined simultaneously, which in turn enable us to meet the main aim of the present study.
Additionally, thematic analysis offers a exible approach to data that enabled us to examine key positive and dicult social incidents in the lives of people
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with AN as well as explore other concepts such as different types of social-emotional diculties including information processing biases, and emotion
processing and regulation styles.
Thematic analysis has been proposed to involve inductive analysis whereby themes are identied from the data without prior expectations or theoretically
driven analysis where the researcher’s prior knowledge of the phenomenon studied shapes the process (Braun and Clarke, 2006, 2013). In the present study we
used a combination of these two approaches. Informed by previous work, we took a theoretical approach to examine participants’ experiences of positive and
dicult events. CIT questions were used to probe participants to provide further detail about the event in question, who the other people involved were, how the
participants interacted with them, and nally whether they were satised with the outcome. Participants’ narrative responses to question about positive and
dicult events, were then analysed separately to identify commonly occurring themes and subthemes within each event category. We paid particular attention
towards what the social interaction participants chose to discuss, how the participants described their own and others’ behaviour, what emotions were
discussed or emerged from the narratives, and how satised the participants were with the outcome. Within each event category themes were identied
without reference to previous work, thus representing inductive themes.
Before starting thematic analysis, all CIT responses were divided according to event category, descriptions of positive and dicult events were examined
independently. We adopted a six-step approach to thematic analysis. We began with (1) data familiarisation, a stage during which the narrative responses
were read thoroughly. After this (2) initial codes were generated to identify content features, which represented commonalities and differences between the
narratives. The feature codes were then grouped and (3) broader themes were identied. Following standard practice, during this stage, certain content feature
codes were discarded if they were identied in fewer than 3 participants’ narratives or if they did not t in any of the other broader themes already generated.
Next the themes generated by grouping the feature codes were (4) reviewed to ensure clear relationships themes and subthemes and avoid duplication. After
review, (5) themes and subthemes were dened according to the concepts they represented and the (6) nal report was produced. The codes and themes were
agreed upon independently by the two authors. Any disagreement or uncertainty regarding the codes and themes were brought to the whole team for further
discussion.
Results
1.1 Positive critical events
When participants were asked to reect on positive critical events, some discussed events that were positive throughout and left them feeling good about
themselves. However, most participants chose to discuss events that had at least some negative components, either reecting on the their own negatively
biased expectations or focusing on negative events in a perceived absence of positive experiences. Thus, three major themes reecting the emotional valences
of the narrative responses were identied in participants’ narrative responses to the CIT questions about positive critical events: (1) Unexpected positive
outcomes, (2) Moments of celebration, (3) Nothing positive to report (Figure 1). Each theme and their corresponding subthemes are presented in Figure 1 and
discussed further below.
Figure 1. Positive critical events
1.1.1 Unexpected positive outcomes
The
Unexpected positive outcomes
theme was identied in several narrative descriptions of events where the participants described feeling low and alluded to
having negative expectations of themselves, the event itself, or the other people involved. Instead of having these expectations met, the participants talked
about how they were pleasantly surprised by the actions of others:
“My sister found my food that I was hiding behind my bed. It was positive because [she]
wasn't rude and horrible about it” (AN-05)
. This theme suggests that many participants identied as having negative information processing biases, assuming
they were worthless and unloved, or the people around them did not care or understand them. When these expectations were met with positive actions from
others, the participants talked about how such experiences made them feel wanted, supported, and gave them motivation to work on their recovery. Although
these events all involved challenging participants expectations and assumptions, it was clear from the descriptions of the positive outcomes that these were
critical positive experiences.
The
Unexpected positive outcomes
theme comprised of two subthemes: (a)
positive reminders
and (b)
understanding and acceptance
. Several participants
discussed receiving
positive reminders
from their loved ones during times when they were feeling low or going through hard times. In all these narratives,
participants briey alluded to their low self-esteem and low mood, which they assumed their loved ones knew about. This knowledge was discussed as the
catalyst that led their loved ones to show the participants through actions that they were indeed loved and worthy.
“My chest infection had been worsening in
the few days preceding this incident, and in turn my mood had dropped quite a bit, so my self-esteem had been particularly low...Two of the day staff
volunteered to take me [to the Emergency department]…them going above and beyond made me feel cared for and worthy” (AN-07)
. A few participants also
mentioned that although the positive reminders made them feel loved and gave them motivation to work hard on their recovery, they also triggered feelings of
guilt:
“I was in hospital on Christmas day and my father visited. He brought with him a big jar of notes that my friends had written as well as small gifts from
them, all [the] memories from the past and things they liked about me…I felt very emotional, but also guilty” (REC-05)
. This further indicates that people with
AN may battle with deep sense of worthlessness and, therefore, positive exchanges can give rise to complex emotions, which in turn can make it dicult to
cope with or accept positive interactions.
Another subtheme was
understanding and acceptance
, which included discussion of signicant stages of illness. These included having other people nd out
about ED related behaviours and needing hospital treatment. Hiding the illness is common in AN, often fuelled by feelings of embarrassment, shame, or desire
to protect the illness, which can be seen as something valuable and positive. This in turn often leads to avoidance and further social isolation, creating barriers
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to help-seeking. Although all participants talked about how other people nding out about the ED was a daunting prospect, they also discussed their desire for
support and acceptance:
“[I] wanted no one to nd out. But it was good that they found out…I felt supported and less alone with what I was doing” (AN-05)
.
Being met with compassion and understanding also served as an opportunity for more open discussion and learning, which in the context of treatment helped
in the recovery process: “
our sessions individually had initially focused on her [therapist] gaining an understanding of my personality and thought
patterns…“[It] planted the seed around navigating through negative emotions…the skills I developed during this time enabled me to communicate this better to
the people around me” (REC-02).
It was clear in the narratives that understanding and acceptance from loved ones and professionals was instrumental in the
participants being able ask for help without judgement, and to direct compassion towards themselves and allow themselves to engage with treatment.
1.1.2 Moments of celebration
The theme
Moments of celebrations
included discussion of being part of a fun event, such as a wedding or a birthday celebration, and achieving goals, such
as getting accepted to university. Participants described the events using language that indicated that they felt the events were positive throughout the
narrative. Interestingly, this theme was generally characterised by external focus of attention, with participants primarily talking about and describing the event
and the other people involved. This could reect an attempt to reduce self-focused attention to lower social anxiety. Indeed, a few participants discussed how
focusing on activities and their loved ones enabled them to
“get out of [their] own head” (REC-01)
and enjoy the moment. This theme comprised of three
subthemes, (a)
Being a part of an event
and (b)
Working hard and succeeding
, which are discussed further below.
The rst subtheme,
Being part of an event
, included discussion of both signicant occasions such as a wedding or birth of a relative, as well as smaller get-
togethers, including birthday celebrations and days out. All narratives within this subtheme were characterised by a focus on being actively involved and
participants discussed how being part of the event and focusing on the activities made them feel connected to their loved ones:
“By saying 'yes' to one thing,
and seeing I was still okay after it, I was more likely to say 'yes' to the next. As I engaged in more things, I enjoyed myself more as had more condence that
the consequences would be okay.” (REC-07).
It was also clear that sense of belonging and shared experiences made participants feel like they were able to
function competently as part of their community, which for some participants served as motivation to work hard on recovery form AN:
“His birth gave me the
determination to work hard on my recovery so that I could watch him grow into a bright young boy and spend valuable time with him” (AN-08)
.
Another subtheme was
working hard and succeeding
which was characterised by participants discussing how they worked hard to reach their goals. Although
participants mentioned how receiving support and encouragement from their loved ones during this time was important in keeping them focused and calm,
the primary focus was on their own work:
“I worked hard to get where I wanted to go [University of choice]…[my family offered]Lots of support and
encouragement which helped” (AN-14).
This sense of accomplishment made participants feel proud and competent: 
“Having been so unwell that I had
previously been unable to undertake barely any physical activity…[I] felt a huge sense of achievement in being able to take my young daughter onto the ice
rink” (AN-09)
. It was clear that the feeling of achievement allowed participants to view themselves in a more positive light, which in turn made them feel more
motivated and feel closer to their loved ones.
1.1.3 Nothing positive to report
Unexpectedly, a few participants recounted negative experiences with no clear positive themes as their positive critical events. These included accidental death
of a loved one and being victimised. One participant also talked about missing out on an important, positive family event: “
My brother asked his girlfriend to
marry him…I missed him asking her…I felt like a failure and a let down to the family” (AN-09)
. A tendency to associate the self with negative events is common
in AN (Oldershaw, Startup and Lavender, 2019), and these narratives could be a reection of an extreme case of negative bias whereby these participants felt
that they had nothing positive to discuss or that nothing positive had happened to them.
1.2 Dicult critical events
Most participants discussed situations that were in some way related to their ED when asked to recount dicult critical events in their lives. It became clear
that for these participants the AN was often at the centre of important negative experiences, which is to be expected as the illness and associated symptoms
often serve as both the cause and consequence of shame and distress. Interestingly, other participants discussed dicult events that were not necessarily
directly tied to AN, but were to do with other distressing life events that happened to occur when the participant was ill. Thus, the following themes were
identied in the narratives: (1) ED-related dicult events and (2) non-ED dicult events. The themes and their corresponding subthemes are presented in
Figure 2 and discussed further below.
Figure 2. Dicult critical events
1.2.1 ED-related dicult events
The
ED-related dicult events
theme was identied in narratives where participants discussed interactions with their loved ones or ED services that revolved
around the illness and which resulted in conict and personal distress. Participants primarily discussed how other peoples reactions to the illness or
associated behaviours made them feel pressured or ashamed. This theme suggests that people with AN have many complex emotions tied to their illness,
which can be dicult to navigate during stressful events. Indeed, as participants discussed how these dicult interactions left them feeling alone,
unsupported, and as though they should or could not openly discuss their emotions, it was clear these social events formed a signicant step in their illness
Page 6/12
journey. The
ED-related dicult events
theme comprised of three subthemes: (a)
ED as a cause
, (b)
Facing ED
, and (c)
ED services,
all of which are discussed
in more detail below.
The rst subtheme,
ED as a cause
, included participants discussing how AN was causing them personal distress and leading to relational conict. Participants
talked about how their illness made them feel like the odd one out in social occasions, leaving them feeling overwhelmed and sometimes unable to cope.
Social eating in particular made participants feel pressured to challenge their ED thinking style and behaviours, which generally resulted in one of two negative
outcomes. Some participants felt overwhelmed and upset,
“Went out for dinner and ended up crying because I ate” (AN-01)
, which left them feeling guilty and
ashamed despite the fact that they wanted to enjoy the event:
“I upset my family and ruined the evening.Also embarrassed myself…I didn't want to react that
way but at the time it helped me cope.” (REC-01)
. Other participants found that being under pressure made them feel unheard and misunderstood when they
tried to explain or express they feeling and thoughts, which in turn led to anger and arguments:
“My mum and I started to discuss the meal plan in the car but
the conversation kept going round in circles…I became increasingly more irritated and distressed as the discussion went on, and eventually reached my
breaking point” (REC-07)
. Frequently, participants who wrote about ED as a cause of relational conict also discussed how these dicult interactions solidied
their feelings that their loved ones were not there to support them, making them feel like they could not reach out and ask for help when they needed it:
“I felt
belittled, like she [a friend] didn’t really care. I felt scared that others felt the same as her, and that I shouldn’t talk to others about how I felt because they would
start resenting me” (AN-19)
.
Facing the ED
was another clear subtheme, including discussions of situations where participants were suddenly made aware of the extent of their illness and
how it impacted other people around them. Denial of the illness or its impact on the persons health is common in AN. This thinking style can be thought of as
a coping mechanism, which can help the person feel strong and in control. Thus, unsurprisingly some participants seemed shocked to receive diagnosis of AN
when they were going to see their doctor for other reasons:
“I was diagnosed with anorexia nervosa and was about to be hospitalized…I did not believe this
was happening. I did not think there is anything wrong with me. I have heard about anorexia, but I did not think I am the one having it.” (REC-10)
. Participants
also alluded to often being unaware of the impact AN had on their loved ones, which made having to suddenly face the reality of the illness an even more
dicult experience:
“I passed out at the GP and it made my mum very upset…I had not eaten anything before going to the appointment.” (REC-03)
. In the end,
despite the diculties, a few participants also talked about positive outcomes and relief associated with having to face their illness:
“I was almost relieved to
be diagnosed, it felt like I could nally speak to somebody about it.” (AN-10)
.
The third subtheme was
ED services
, which included discussion of participants experiences and interactions with their ED care teams. All narratives under this
subtheme related to a particularly turbulent time in the participants’ life during which the AN was in charge and participants engaged in behaviours and
thinking styles that could be interpreted as protecting the illness. Indeed, several participants talked about ED services in a manner that suggested a
me-
versus-them
mentality, making it hard for participants to engage with treatment:
“As my mum and I exited the ward that Friday night, my care-coordinator
handed a meal plan for that weekend to my mum. It wasn't the one we had discussed… My anorexia was talking for half of the conversation, trying to get my
mum to change the meal plan… I felt extremely betrayed both by my care-coordinator (who I got on with and thought I could trust) and my mum (who I felt
was taking the hospital's side and not her own daughter's)”(REC-07)
. Some participants also talked about how during this time they felt let down by the ED
services even though they felt this was a time when they needed support the most:
“I'd been struggling with my eating disorder recovery and not making any
progress…Due to my lack of progress and motivation the eating disorder team decided to take a treatment break…I was very overwhelmed and tried to end my
life by jumping off a bridge.” (AN-07)
. In all these narratives, the participant conveyed a feeling that things could have turned out better if they had been heard
or allowed to be part of their own treatment instead of being dismissed and let down.
1.2.2 Non-ED dicult events
The narratives that formed the
Non-ED dicult events
theme involved negative life experiences that were not directly related to the ED, but rather happened to
occur while the participants were ill. This theme comprised of two subthemes: (a)
Death and illness
, and (b)
Relational conict
.
Under the
Death and illness
subtheme, participants discussed grieving the loss of a loved one or dealing with a family members illness. When discussing
losing a loved one, participants described going through common stages of grief, but appeared to react in one of two ways: they felt upset and overwhelmed
to the point that they did not want, or know how, to reach out for help:
“I was on the way to a party on the bus and got a message from a friend that our friend
had died. I continued to the party and didn't mention it to anyone there…I felt very dissociated and didn't know what to do. I got quite upset and no one knew
why.” (REC-05).
Some participants, on the other hand, talked about how the loss made them feel exasperated:
“The death of my godmother/aunt. I was feeling
very angry as she was sick and I wanted to swap places with her” (AN-16)
. A few participants talked about how their need to stick to their routine at the time of
the incident made them feel guilty and ashamed later:
“My mum had a seizure…I was upset and frustrated as I stressed about how I'd get to work and who
would make my lunch. I should've been more upset and caring and stayed at home” (AN-04)
.
The other subtheme identied in the narratives was
Relational conict
. This subtheme included discussions of dicult interactions with loved ones which left
participants feeling alone and upset, when what they desired was support and encouragement from their loved ones:
“I was in hospital after having a blackout
and badly injuring my face, and I texted [my friend] to let her know, but received an abusive reply…She told me our friendship was over” (AN-18)
. Interestingly,
similar to the relational conict caused by the ED, narratives under this subtheme also included discussions of how these dicult interactions left participants
feeling dismissed, which was often interpreted as an indicator that nobody cared and there would be no point in reaching out to others in the future:
“My mum
disregarding my feelings made me feel invalidated and added to my belief that I shouldn't open up to people.” (AN-22)
. Taken together, this could be one of the
factors inuencing the development or maintenance of negative cognitive biases in AN.
Discussion
Page 7/12
The present study aimed to explore positive and dicult events in the lives of people with lived experience of AN. Participants completed a CIT-style
questionnaire asking them questions about these critical events and the resulting narratives were subject to thematic analysis. Themes identied in the
narratives met some a priori expectations, namely that many of both the positive and dicult incidents were presented against the backdrop of the eating
disorder, which formed a large part of the participants’ lives when they were acutely unwell. Interestingly, several participants also revealed their negative
expectations when asked to discuss positive life events.
Over the past few years there have been calls to study positive emotions in AN (Tchanturia
et al.
, 2015), however, to our knowledge no studies have thus far
explored patients’ narratives of positive experiences. In the present study, the critical events that were entirely positive under the theme
Moments of celebration
frequently involved discussion of achievements, having something to look forward to, and active engagement in activities. Such focus on other people and
future events could reect reduced self-focused attention. Self-focused attention, sometime referred to as rumination or dwelling on one’s own emotions and
internal experiences, has been extensively studied in the eld of social anxiety and has been associated with negative interpretation bias and tendency to
exaggerate others’ negative feelings towards oneself (Mor and Winquist, 2002; Bögels and Mansell, 2004; Anderson
et al.
, 2008). Reducing self-focused
attention, particularly to negative aspects of self, has been found benecial in reducing social anxiety and fear of negative evaluation (Bögels and Mansell,
2004; Hedman
et al.
, 2013; Donald, Abbott and Smith, 2014; Junghans-Rutelonis
et al.
, 2015). This nding suggests that people with AN can shift their focus
of attention and have rich, enjoyable experiences, demonstrating optimism and hope even in the acute stage of illness.
Fully engaging in activities and focusing on other people can also be seen as increased
“big picture”
oriented thinking. Experimental research within the
general population has documented that increased
“big picture”
thinking is associated with a tendency to react in a positive manner and increases positive
affect (Fredrickson and Joiner, 2002; Gu
et al.
, 2017). Interventions targeting excessive detail focus in AN, such as cognitive remediation therapy, have been
found to improve mood and increase “big picture” thinking in experimental tasks (Dahlgren
et al.
, 2014; Lang, Treasure and Tchanturia, 2015; Giombini
et al.
,
2017). Furthermore, qualitative research has found that the ability to see the
“big picture”
may be a key component in supporting recovery from AN (Weaver,
Wuest and Ciliska, 2005; Cardi, Cunha and Treasure, 2013). When discussing their recovery journey, people with lived experience of AN have reported that
focusing more on their loved ones enabled them to start to questioning the illness and recognise its full impact on their own and others’ lives (Weaver, Wuest
and Ciliska, 2005). This was identied as a turning point in the illness journey at which the person felt able to start distancing themselves from the illness and
develop an identity independent of AN. Taken together these ndings suggest that further investigating and building on the strengths and resilience people
with AN have may be a useful target for further interventions. Sole focus on a “disease model” of emotional processing in AN often fails to examine the full
human experience of someone with AN (Tchanturia
et al.
, 2015).
In the present study, several participants seemed to demonstrate negative biases when asked to discuss important positive events. This nding is in line with
previous experimental work nding that people with AN show increased attention towards negative stimuli and a tendency to interpret ambiguous scenes in a
negative way (Cardi
et al.
, 2015, 2017; Ambwani
et al.
, 2016; Turton
et al.
, 2018). Interestingly, participants found these experiences to be positive because their
own negative expectations were met with positive actions from the people around them, particularly when they were met with support, validation, and
understanding that they may have felt unable to ask for. These events could be interpreted as so called corrective experiences, in which a person challenges
their own fears or expectations resulting in a new way of viewing others and the self (Goldfried, 2012). Corrective experiences have been reported to provide
people with new understanding of previous important experiences through reection (Wiraszka-Lewandowska, Sym and Kokoszka, 2005; Friedlander
et al.
,
2012; Friedlander, Lee and Bernardi, 2013). This in turn leads to improved self-esteem, reduced reliance on defence mechanisms, and greater social support
achieved through disclosure and sharing of emotional experiences (Friedlander
et al.
, 2012; Friedlander, Lee and Bernardi, 2013). Although corrective
experiences have not been extensive research in the eld of ED, one study examining the usefulness of psychodrama reported that by creating corrective
experiences the group allowed the participants with ED to re-evaluate their previous emotional, personal, and cognitive experiences (Prosen, 2016).
In previous qualitative work people with AN highlighted the importance of allowing themselves to accept social support and open up to others when
recounting their experiences of recovery (Weaver, Wuest and Ciliska, 2005; Federici and Kaplan, 2008; Jenkins and Ogden, 2012). Participants engaged in
careful expectation management, rst gauging others reactions before opening up, which in the end gave them the aliate support they were seeking and
aiding their recovery (Weaver, Wuest and Ciliska, 2005; Federici and Kaplan, 2008). Taken together with the present ndings, this suggests that people with AN
are open to corrective experiences, which highlights need for further research into how these experiences may be facilitated in a therapeutic context in the eld
of ED. Importantly in the present study, a few participants also discussed how the positive actions and gifts from others made them feel loved, but also
triggered feelings of guilt. This could be interpreted as evidence of an internalised, deep sense of worthlessness and shame, which makes believing and
accepting positive words and actions towards oneself dicult. Indeed, previous work has found that people with AN frequently report feeling worthless, which
can interfere with social relationships and recovery (Offord, Turner and Cooper, 2006; Federici and Kaplan, 2008; Tierney and Fox, 2011; Watson
et al.
, 2012).
Taken together, these ndings suggest that negative cognitive biases can be challenged with corrective experiences in AN, but the actions and reactions of
others, and navigating through feelings of worthlessness are key in order to not further alienate the person.
Dicult critical events could be broadly divided into ED-related and non-ED events. When participants were discussing ED-related dicult events they talked
about personal distress, diculties with ED services, and having to face their illness. Participants mostly talked about how these events made them feel
pressured, misunderstood, and alone, with some participants talking about how they wanted to escape the situation as they felt unable to cope.
Previous studies with people with history of AN have reported that feeling alone with the illness and unheard or misunderstood made participants feel less
safe and more reluctant to accept changes (Federici and Kaplan, 2008; Linville
et al.
, 2012; Fogarty and Ramjan, 2016; McNamara and Parsons, 2016). This
led to increased distrust between the patient and their loved ones, enforcing feelings of loneliness, and negatively impacted therapeutic alliance (Linville
et al.
,
2012; Fogarty and Ramjan, 2016). As a result, participants reported that they often fell intentionally silent and did not want to reach out. However, such
reduced expressiveness and responsiveness has been found to be associated with reduction in social support offered by others and disrupted communication
Page 8/12
(Gross, 2002; Butler
et al.
, 2003; Butler, Lee and Gross, 2007). All of this combined may create a vicious cycle of reduced social support, serving to maintain the
illness.
Interestingly, a few participants who discussed facing their ED as a critical dicult experience also found that in the end these were key events in their
recovery. This could be taken as
“hitting rock bottom
and suggests that having to nally face the impact the illness had on them and their loved ones was an
important source of motivation for these participants. This could be taken as a shift in thinking, moving from denial to acknowledging the illness. Indeed,
previous studies have reported that people recovered from AN found having to face the personal, health, and social consequences of the illness was a turning
point in their illness journey (Weaver, Wuest and Ciliska, 2005; Jenkins and Ogden, 2012). It enabled them to see the
“bigger picture
and how their actions
impacted other around the, which in turn gave them motivation to work on the their recovery (Weaver, Wuest and Ciliska, 2005). These ndings suggest that by
reecting on dicult life events some people were able to turn them into a positive. This further highlights the importance of examining not only negative but
also positive emotions in AN as these may be an interesting target for interventions and a tool to prevent relapse.
When discussing both ED-related and non-ED dicult life events several participants talked about relational conicts as particularly important interactions.
Participants talked about how others’ negative reactions to their attempts to seek support or ED-related coping strategies made them feel alone and rejected.
Many participants also mentioned how these interactions served to further enforce their pre-existing notion that other people did not truly care about them and
that they were alone with their illness. Such interpretations of these negative experiences could be one of the factors inuencing the development and
maintenance of negative cognitive biases in AN, similar to those alluded to in the
Unexpected positive outcomes
theme. This could be interpreted as a
formation of a maladaptive coping strategy founded in expectation management. Tendency to exaggerate others’ negative feelings towards oneself has been
associated with increased negative self-focused attention and rejection sensitivity (Ayduk
et al.
, 2000; Mor and Winquist, 2002; Bögels and Mansell, 2004;
Anderson
et al.
, 2008). Previous experimental studies have reported that people with AN report elevated rejection sensitivity and perceived lower social rank
(Cardi
et al.
, 2013; Via
et al.
, 2015; De Paoli
et al.
, 2017). When expecting to be rejected by others, people who experience high rejection sensitivity may engage
in passive, hostile behaviours including avoidance and withdrawal of love and support (Ayduk
et al.
, 2000, 2003). However, instead of preserving pride and
bringing about positive feelings, such strategies tend to become self-fullling strategies, often leading to more social diculties including rejection (Ayduk
et
al.
, 2000, 2003). Thus, further investigation of potential maladaptive coping strategies that fuel negative cognitive biases in AN may be of interest.
1.1 Limitations
The main limitation of the present study was that it was conducted online, meaning that it was not possible to conduct a full assessment to conrm diagnosis
or stage of illness. Additionally, the sample was almost entirely white, British, and female, which limits the conclusions that can be drawn. Future studies may
benet from targeting specically gender- and ethnic minorities as their experiences of AN and related diculties may be different.
The CIT was adapted into questionnaire format, which allowed us to recruit participants from more widely across the country without placing an additional
burden on participants. However, this format limited the responsiveness inherent to an interview setting. For instance, had the study been conducted face-to-
face, it would have been possible to ask why participants described negative experiences when asked for positive events.
Conclusion
The present study aimed to investigate positive and dicult critical incidents in AN. Although, several participants talked about positive events that involved
Moments of celebration
, with focus on reduced self-focused attention and increased
“big-picture”
thinking, the majority of the positive critical events also
involved some negative experiences that then ended on a positive note. When discussing
Unexpected positive outcomes
participants revealed some evidence
of negative biases which were challenged through positive actions of others around them. Dicult critical events broadly involved discussion of
ED-related
and
Non-ED life events
. When discussing
ED-related life events
participants talked about how the illness made them feel like they couldn’t join in and how
others around them made them feel under pressure, asking for too much too soon. Interestingly, relational conict appeared in both ED-related and Non-ED
related life events and discussion of how these conicts solidied participants pre-existing expectations that other did not truly care about them and
convinced them. These ndings further support the notion that people with AN often have negative information processing biases. In the present work, these
biases appeared to be rearmed by dicult interactions with others, whether directly linked to the illness or not, which left them feeling alone and
unsupported. Importantly, it seems that these negative beliefs could be challenged through corrective experiences, suggesting that it is possible to modify
negative biases in AN.
Abbreviations
AN = anorexia nervosa
ED = eating disorder
REC = recovered
CIT = Critical incident technique
BMI = body mass index
N = number
Page 9/12
M = mean
SD = standard deviation
Declarations
Ethics approval and consent to participate
The study was approved by the King’s College London Psychiatry, Nursing and Midwifery Research Ethics Subcommittee, United Kingdom (HR-19/20-13004).
All participants were required to complete an online consent form prior to completing the study.
Consent for publication
Not applicable.
Availability of supporting data
The CIT questionnaire used in the study is included in this published article (Supplementary materials). The datasets generated during and/or analysed during
the current study are not publicly available due to the data containing information that could compromise research participants’ privacy/consent, but are
available from the corresponding author on reasonable request.
Competing interests
The authors declare that they have no competing interests.
Funding
JL is supported by Sir Henry Wellcome Postdoctoral Fellowship (213578/Z/18/Z). The research was further supported by MRC-MRF Fund (MR/R004595/1).
The funding bodies did not play an active role in the design of this study, nor in data collection or analysis, nor in writing the manuscript.
Authors' contributions
JL, LT, RB, and FS contributed to the conception of the study and designed the online questionnaire. JL, LT, and RB also contributed to the recruited
participants and data collection. JL and FS contributed to the data analysis and interpretation of ndings with nal approval from LT, RB, KT, and SW. All
authors contributed to drafting the nal paper. All authors read and approved the nal manuscript.
Acknowledgements
Not applicable.
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