Eating Disorders Research Unit, Institute of Psychiatry;
Health Services Research Department, Institute of Psychiatry;
Bethlem Royal Hospital;
Eating Disorders Research Unit, Institute of Psychiatry, London, UK
Correspondence: Jenna Whitney, PO Box 59, Eating Disorders Unit, Institute of Psychiatry, De Crespigny Park, London SE5 8AF,UK. Tel: +44 (0) 207 188 0169; fax: +44 (0) 207 188 0167; e-mail: j.whitney{at}iop.kcl.ac.uk
Declaration of interest None. Funding detailed in Acknowledgements.
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ABSTRACT |
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Aims To gain a detailed understanding of carers illness models and caregiving experiences.
Method Qualitative analysis and computerised text analysis were conducted on narratives written by parents as partof a family intervention at a specialist in-patient unit (20 mothers, 20 fathers).
Results Themes concerned illness perceptions, impact on the family, and carersemotional, cognitive and behavioural responses towards the illness. Parents perceived anorexia nervosa to be chronic and disabling. Carers blamed themselves as contributing to the illness and perceived themselves as helpless in promoting recovery. Mothers illustrated an intense emotional response, whereas fathers produced a more cognitive and detached account.
Conclusions Part of the distress in living with anorexia nervosa may be explained by unhelpful assumptions and maladaptive responses to the illness. Training parentsin skills to manage the illness mayimprove outcome by reducing interpersonal maintaining factors.
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INTRODUCTION |
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METHOD |
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During the time of this study, patients (all of whom were female) and their families were randomly assigned to one of two family interventions. Families were either seen individually on a weekly basis for approximately 18 weeks (treatment as usual), or in conjunction with another family for an intensive 3-day workshop intervention. The aim of both interventions was to promote carer efficacy by providing psychoeducation and teaching motivational communication skills. The two interventions used similar techniques and were facilitated by the same mental health professionals.
At the end of the first day (or around the fifth session) carers were asked to complete a therapeutic writing task. Carers were instructed to write in their own time a letter describing what it is like to be the mother/father/sister/partner of someone with anorexia nervosa, and to bring it to the following session to read and discuss with the group. Carers were not given any time or length restraints for this exercise. All carers consented to their letters being used for teaching and research purposes. Ethical approval was obtained for this project and written consent was obtained from the participants.
Participants
Letters from 20 fathers and 20 mothers were collected and included in the
analysis. For 13 patients, both parents letters were included; for the
other 14 patients only one parents letter was available. The mean age
of carers was 52.7 years (range 4066). The mean age of the mothers was
50.8 years (range 4060) and that of the fathers was 54.4 years (range
4566). The 27 patients had a mean age of 20.5 years (range 1431)
and a mean body mass index of 13.6 kg/m2 (range 10.816.9) at
admission. Approximately 45% of the patients had a duration of illness of
greater than 5 years, and about 20% had a duration greater than 10 years.
Approximately 65% of patients and their families participated in the family
intervention offered within the in-patient service. This is a representative
sample of families presenting to a local and national in-patient service, as
only 10% of patients and their families refused to take part. Others could not
participate for reasons such as lack of family and self-discharge.
Qualitative analysis
Letters were analysed using the constant comparative method
of the grounded theory approach (Glaser
& Strauss, 1967). Using this approach, no pre-existing
category is imposed on the data but themes begin to emerge as the analysis
takes place. The researcher generates as many themes as possible, while at the
same time comparing them with previous incidents coded under the same theme.
Similarities and differences between themes are examined. This allows the
researcher to develop hierarchical coding systems and devise a theoretical
framework (Glaser & Strauss,
1967; Willig,
2001).
Two authors (J.W. and J.T.) initially examined the letters to identify emerging themes. Letters were separated into statements and a line-by-line open coding session was performed to ensure that the analysis was grounded to the data and comprehensive. The coding scheme generated by the lead investigator (J.W.) was used to code all the letters; this author continually checked and modified the coding framework to ensure that it incorporated all information within the transcripts. To ensure reliability of the findings, the devised coding scheme was given to an additional investigator (K.G.) to code a random set of 15 letters. A k coefficient of 0.61 was found, illustrating good interrater reliability of the coding scheme. The coding scheme was shown to be comprehensive and no new theme emerged. Once themes and categories were found, the authors examined models in the mental health and caregiving literature that corresponded with the findings.
Computerised text analysis
The narratives were also analysed using a computerised text analysis
program, the Linguistic Inquiry and Word Count (LIWC;
Pennebaker & Francis,
1999). This program is designed to analyse text according to
emotional, cognitive, structural and linguistic processes used within the
writing. It conducts a word-by-word analysis and assigns words to over 70
categories, and then calculates the percentage of words in each category.
Results from 43 individual studies were compiled by Pennebaker & Francis
(1999) to produce mean
reference values for emotional writing (when individuals are
asked to write about deeply emotional topics) and control
writing (when asked to write about non-emotional topics). These
published reference values were used for comparison. Analyses were conducted
between genders using robust standard errors to control for the clustering of
families.
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RESULTS |
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The higher-order categories and the 16 themes within them are illustrated in the following text and quotations. The six higher-order categories corresponded with several theoretical models within the existing literature: illness perception, burden and coping response. Examination of these theoretical models was used to understand the carers stress. Carers narratives highlighted some maladaptive appraisals and responses, and significant gender differences.
Carers illness perceptions
Perceptions regarding illness characteristics
Most carers discussed their views of the nature or characteristics of the
illness. Carers were perplexed about the cause and contributing factors of the
illness. Mothers and fathers equally placed blame on themselves, questioning
aspects of their daughters upbringing and what could have been done
differently to prevent the illness. Most parents perceived the illness to be
chronic, expressing pessimism about their daughters ability to overcome
the illness and readjust to normal life. One of the most
predominant themes concerned the consequences of the illness. Carers perceived
negative impacts on the patients physical, mental and social
well-being. Both mothers and fathers believed that the illness had resulted in
their daughter becoming more dependent and demanding, with a lower sense of
self-worth. Fathers expressed greater concern regarding the detrimental
effects on their daughters physical health, whereas mothers expressed
greater regret over lost opportunities. The following quotations are examples
of carers perceptions regarding the nature and characteristics of the
illness.
Cause
Guilt is the most difficult to deal with because we still dont know what has caused the anorexia (father 1).
Not knowing what I have done to bring this on or what has someone else done (father 12).
Illness longevity
She will take years to readjust to a normal life; she may never be able to do so (mother 1).
I realise that the sufferer will always have to live with this condition (father 2).
Symptoms and consequences
Severe weight loss would lead to chronic malnutrition with long-term effect on health (father 5).
Anorexia has turned her into a person she sees as worthless (father 8).
Patient, carer and treatment control
Several themes regarding control over the illness emerged within
carers narratives. Although the majority believed that their child had
the ability to conquer her illness, others regarded their child as a victim,
engulfed by the illness and with no control over the outcome. Most parents
expressed their own helplessness in trying to control the illness. They
perceived any attempt to help on their part as unproductive. Carers expressed
relief that their child was receiving treatment and fathers, in particular,
had hope and faith in the outcome of treatment.
Patient control
Perhaps I have to accept what she has decided for herself (mother 1).
The sufferer is the only one who can "do it" (father 2).
Carer control
I try to do what I think is right at the time but it always seems so wrong (mother 17).
Nothing you do or say makes a difference (father 3).
Treatment control
The only time you can relax a little or have any comfort is now when she is in the eating disorders unit because of the methods of treatment she becomes healthier physically (father 13).
Since [my daughter] has been admitted to hospital I can now see the daylight at the end of the tunnel (father 7).
Illness coherence
Despite their attempts to educate themselves about anorexia nervosa, carers
were perplexed, particularly by the underlying mechanisms of the illness. As
illustrated in the following quotations, carers express bewilderment caused by
the pure complexity and seriousness of the illness. Fathers tended to express
their own bewilderment, whereas mothers were more inclined to express
frustration caused by others lack of understanding. Carers felt that
although friends and relatives tried to provide support, they could not
appreciate the difficulties experienced by both parents and child.
Carers illness coherence
To live with a loved one refusing to eat is the ultimate to lifes very being. We need food in order to survive. Why challenge this basic fundamental? (father 4).
When the true extent of her illness was explained to us,Ihad noidea she was so desperately ill (mother 8).
Others understanding of the illness
The trouble is that very few people totally understand what you are going through (mother 1).
As for friends and relatives, until they experience the illness, they just do not understand, and are inclined to ignore her (father 7).
Impact of the illness
Effect on the family
Many carers felt that the illness had profoundly affected them, with
approximately half expressing a sense of being manipulated and controlled by
the illness. Both mothers and fathers described a very dependent relationship,
with the patient dominating the carers time and making unreasonable
demands of them, as illustrated by the statements below. Carers felt that the
illness contributed to friction within relationships, arguments between family
members and a stressful atmosphere within the household. The impact on their
own mental and physical health was noted, and several fathers expressed
concern about the impact on their wife and on other family members. Finally,
parents were concerned about the effects on the familys social life and
difficulties in making future plans.
Interference with family life
With a child at home with this illness, one has to make lots of changes to ones lifestyle: going out as a family, going on holiday, seeing friends, etc. (father 11).
II feel it is putting strain on our marriage feel it is putting strain on our marriage as [my husband] wants to get on with life (mother 9).
Control and over-involvement
Why give in to her all the time? Why spoil her? Why let her ruin your life? Why let her dominate your life? (mother 1).
The sufferer has to be given more and more of ones time and energy until the basic element of togetherness is under threat (father 1).
Emotional and cognitive processes
Emotional response
All carers, with one exception, expressed some negative emotions, varying
from sadness and distress to fear, anger and hostility. Many expressed
self-blaming emotions such as guilt, failure and inadequacy. Several parents
primarily mothers demonstrated an overwhelming emotional
response, including sleep deprivation, preoccupation and feelings of
hopelessness. There were also positive themes within this domain, with fathers
tending to express greater affection towards their daughters, pointing out
their admirable qualities and their own desire to support and protect them.
Mothers described a sense of support when close friends and relatives provided
empathy. However, when referring to acquaintances perceived as less informed,
carers expressed reluctance in discussing the illness for fear of
stigmatisation. Mothers and fathers felt angry at the stigma associated with
eating disorders and the tendency for others to trivialise the illness. The
following quotations illustrate the parents emotional responses.
Negative emotions
Above all there is an abiding and profound sadness (father 20).
So how does a mother feel? Failed, useless, bad, stupid, guilty, guilty, guilty (mother 7).
Love and affection
[She] is a talented and intelligent girl who was the life and soul of the family (father 8).
I just feel how I would like to sit with her, give her a big hug, and tell her how special and muchloved she is (mother 10).
Responses to others reactions (stigma and social support)
Luckily I have a fantastic partner who is a rock. I have an incredible sensitive and caring older daughter (mother 7).
When she was very thin and we were all outto together,I got very angry when people would stop and stare at her, nudge their companion to look as well (father 7).
Cognitive strategies
Cognitive coping strategies such as hope and optimism, self-distraction and
cognitive reconstruction were described. Wishful thinking was employed
predominantly by fathers as an attempt to reduce hopelessness and
cynicism regarding the future. Fathers were also more likely to articulate
their attempts to distract themselves from the situation, often concentrating
on work to reduce preoccupation with the illness. Some carers used the
strategy of clearly conceptualising the illness as something independent of
the patient, describing it as an enemy or
impostor. Examples of statements in which the carer uses this
method of externalising the illness are included in the following
quotations.
Hope and optimism
Hope that we will all be able to enjoy life again, for ourselves and each other in a settled and happy time (mother 13).
You pray for a miracle, and sometimes they happen. Then you pray it willlast (father 12).
Self-distraction
I am able to immerse myself in work or other projects and for that period of time to put [her] to the back of my mind (father 1).
I now didnt find mealtimes a pleasure and tried to avoid them by going to the gym and getting back after supper (father 14).
Cognitive reconstructions
Having to witness my beautiful, kind friend become possessed with an evil, alien personality that made her antisocial, cruel, rude and illogical (mother 18).
In reality, anorexia is a false, devious enemy posing as a friend to my daughter (father 10).
Maladaptive beliefs and responses
Detrimental appraisals were evident within carers narratives,
highlighting misperceptions about their own or their daughters role in
causing the illness and their lack of efficacy, as illustrated in the
following statements.
Self-blame (causal misperception)
I feel guilt because I must have influenced this illness in some way; it is inevitable as a parent that I could have been in a position to do something to have helped her sooner (father 8).
Patient blame (efficacy misperception)
It is appalling because she has chosen it (mother 7).
Helplessness (efficacy misperception)
You just want to help her as much as you can. Nothing you do or say makes a difference (father 3).Maladaptive responses were also apparent. Carers behavioural responses appeared to be exaggerated, as shown by their overprotective and highly anxious responses.
Overprotective response
You cling to any sign of eating something, you put up with very lengthy trips to the supermarket, sometimes hours, in the hope that they will actually allow you to buy something, backwards and forwards across the supermarket, putting items in and taking them out of the trolley, and not much atthe end of it (father 12).
Over-anxious response
I was very emotional and couldnt talk to anyone without crying and I could not sleep very well and often cried myselfto sleep as I could see what was happening to [her] and just felt helpless (mother 6).
Gender differences
The main gender difference between the accounts was the tendency for
mothers to express greater anxiety, whereas fathers produced more cognitive
and detached accounts, with a greater use of cognitive and avoidant coping
strategies.
Validation
The results of the LIWC analysis are presented in
Table 1. The texts included a
high proportion of emotional words, particularly negative emotions. The
proportions of fear and anxiety words were double those reported in emotional
writing norms. There was a significant gender difference in the use of
emotional words. Mothers used a significantly higher proportion of emotion
words (t=2.59, P=0.015), particularly negative emotions
(t=2.21, P=0.036), with the greatest difference in the
sadness and depressive domain (t=2.93, P=0.007).
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DISCUSSION |
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Coping responses
Carers used a variety of coping responses to manage their anxiety and the
demands placed upon them. Although some of the narratives illustrated adaptive
coping responses such as focusing on their own interests, showing hope and
optimism, seeking social support and externalising the illness, others
produced themes suggesting maladaptive coping. For example, some carers,
particularly mothers, expressed profound anxiety which in some cases appeared
to reach clinical severity. Others expressed negative appraisals of the
illness linked to hostility and criticism towards the patient and themself,
and an overprotective response to the illness. The computerised text analysis
of the narratives confirmed some of the findings from the thematic analysis.
The level of emotion expressed within the narratives was higher than has been
reported in the literature of other emotional writing settings
(Pennebaker & Francis,
1999), particularly for the mothers.
Previous research
These results are consistent with previous caregiving research which has
found that women carers are more emotionally involved
(Stern et al, 1999),
whereas men tend to distance themselves
(Morris et al, 1991)
or use cognitive restructuring to manage the emotional impact
(Barusch & Spaid, 1989).
The heightened anxiety and overprotective response paired with the hostility
and criticism correspond to the concept of high expressed
emotion. This emotional response style in carers is widely recognised
to be associated with a poor outcome in mental illness
(Wearden et al, 2000)
and has an important impact on the outcome
(van Furth et al,
1996), withdrawal rates
(Szmukler et al,
1985) and response to treatment
(Eisler et al, 2000)
in anorexia nervosa.
Strengths and limitations
This is an exploratory study with a restricted methodology, which limits
the conclusions that can be drawn. Parents accounts were produced as a
therapeutic exercise, allowing open-ended and unguided narratives, although
with the purpose of using the material in the process of treatment, which
might have led to some bias in reporting. Specifically, there was a clear
benefit of highlighting specific perceptions and responses that are viewed as
unproductive. We used two approaches for the analysis of the texts. Although
the thematic analysis of carers accounts allowed a comprehensive,
unconfined exploration of the data, reliability and researcher bias are
questionable within such approaches. Conversely, the computerised text
analysis program LIWC is a widely used tool which provides a reliable,
unbiased analysis of the data, but is limited by its rigid categories and
purely literal analysis of the text, which restricts its use for meaning.
These complementary approaches produced similar findings, suggesting a degree
of validation in the results. The generalisability of the findings is
uncertain, because the sample consisted of carers of patients who were
receiving specialist in-patient care and thus were at the severe end of the
illness spectrum. Many wrote about the illness in terms of a medical model
(e.g. causes and chronicity of the illness). Their beliefs about the condition
are likely to have been influenced by exposure to a psychiatric setting. It is
possible that those caring for people with less severe illness, who have not
received hospitalised care, would articulate more general or lay beliefs about
the illness.
Clinical implications and recommendations
The overall aim of the study was to develop a conceptual framework for an
intervention to optimise carers coping and reduce any interpersonal
maintaining factors. The analysis of the parents accounts of caring for
someone with anorexia nervosa has identified important clinical considerations
for the development of new interventions.
Changing illness perceptions
This study identified several themes related to the carers
perceptions of the illness which may contribute to carers distress.
Carers were generally puzzled by the onset and persistence of the illness and
tended to blame themselves. They felt helpless regarding control over the
illness and were pessimistic about the outcome and long-term consequences.
These negative attributions may be linked to anxiety and depression in the
carers. An intervention using cognitivebehavioural strategies to modify
these hopeless and helpless attributions might improve carers
coping.
Reducing unhelpful interaction, overinvolvement and criticism
Many letters expressed themes relating to high expressed emotion:
overprotection, criticism and hostility. Interventions that include a
functional analysis of interactions might decrease these unhelpful
responses.
Encouraging coping behaviours
Carers, particularly mothers, experienced a high intensity of negative
emotions. A high level of emotional arousal, marked by preoccupation and sleep
deprivation, leads to physical and mental exhaustion. Carers articulated some
coping strategies that they used. Fathers were generally more likely to be
able to distance themselves, whereas mothers were more able to elicit support
from close family and friends. Carers also adopted the philosophy used by our
service to externalise the illness. Work with families therefore needs to
include strategies to reduce carers highly aroused state. Teaching
carers the skills of reflective listening can decrease confrontational
interactions. Carers should also be encouraged to seek services such as
support groups and take respite when necessary.
Carers bewilderment regarding anorexia nervosa may reflect a lack of consensus among professionals about the underlying factors and treatment methods. There should be a closer relationship between services, in an attempt to come to a shared understanding and philosophy, as promoted by the NICE guidelines.
Developing services
Following from the analysis, we have developed a curriculum that teaches
carers the skills required to optimise the management of severe eating
disorders. This programme involves modules on coping, medical risk,
understanding change, communication, emotion processing, problem-solving,
interpersonal relationships and managing eating and other difficult
behaviours, supplemented with skills-based workshops teaching parents key
elements of motivational interviewing and cognitivebehavioural therapy.
Carer workshops allow carers to form support networks while learning skills
that help reduce interpersonal maintaining factors and promote patient
recovery. We recommend that other services adopt a collaborative approach with
carers, offering psychoeducation and providing them with the motivational
techniques and skills used by professionals within the field.
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Clinical Implications and Limitations |
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LIMITATIONS
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ACKNOWLEDGMENTS |
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The authors thank all the carers and professionals for their help in conducting this study. Particular thanks are due to Dr Nick Troop, Professor John Weinman, Dr Karen Baistow and Rebecca Walwyn for their advice and assistance in conducting the analysis.
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REFERENCES |
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Received for publication July 7, 2004. Revision received January 24, 2005. Accepted for publication January 28, 2005.
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