Client experiences of involuntary treatment for anorexia nervosa. A review of the literature and implications for social work practice

Client experiences of involuntary inpatient treatment for anorexia nervosa: A review of the

literature and implications for social work practice.

ABSTRACT

Despite improvements in contemporary treatment approaches, anorexia nervosa continues to be

one of the most misunderstood and challenging disorders for health professionals to effectively

address. The aim of this paper was to identify the subjective experiences of clients during their

inpatient admission for anorexia nervosa. A systematic review of the literature identified eight

qualitative studies from the clients’ perspective, which were analysed and compared to discover

key themes and areas of contention. While there are many negative client experiences of

significant concern to be addressed in current inpatient settings, positive experiences were also

discovered within this environment. Findings suggest that more holistic, empathic and

collaborative approaches to clients with anorexia nervosa - that value and validate their

perspectives of their condition and individual recovery needs - can enhance clinical treatment

experiences in future.

Keywords: anorexia nervosa, clients’ views, experiences, inpatient treatment, social work

Anorexia Nervosa and Social Work

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Anorexia Nervosa (AN) is a complex, life-threatening mental illness, for which there is currently

no cure. Limited services and the multifaceted nature of AN make early detection and

intervention difficult, with many AN clients who social workers encounter in their practice being

involuntary inpatients. By this stage, the individual will have already experienced significant

physical, social and psychological disturbances (Butterfly Foundation, 2012). Inpatient services

provide a vital, life-saving intervention for people in the acute stage of AN, however the

influence of inpatient treatment towards meaningful long term recovery has become increasingly

questionable and scrutinised (Bosanac, Newton, Harari & Castle, 2010).

High rates of relapse, readmission and increased risk of suicide reflect disturbingly poor

outcomes for those diagnosed and treated for AN (Harbottle et. al., 2008, cited in Hay, Touyz &

Sud, 2012).Within inpatient settings, core social work values of client participation, self-

determination and empowerment can be compromised by limited treatment efficacy, high levels

of risk and professional doubt towards the competency of the client to refuse and accept

treatment (Kendall & Hugman, 2013). A historical lack of acknowledgement for the voice of the

AN individual in both research and practice further compromises this group, with the majority of

studies focusing on mixed eating disorder (ED) populations, despite differences in views of

treatment existing between ED diagnoses (Smith, Chouliara, Morris, Collin, Power, Yellowlees,

Grierson, Papageorgiou, Cook, 2014). These issues warrant urgent efforts to better understand

the clients’ experiences of clinical treatment. The purpose of this review was to explore clients’

subjective experiences of inpatient treatment for AN, and bring attention to the perspectives of

an often unheard, overlooked population. In contrast to the widely accepted assumption that

individuals with AN lack the competence and mental capacity to make informed decisions in

their best interests, this paper also serves to highlight the insightfulness of study participants’


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towards their condition and treatment. Implications of the review’s findings for social work

practice will be discussed, with suggestions for future research.

METHOD

Search Strategy

A systematic electronic search was completed using Sage, Taylor & Francis and Wiley databases

in April and May 2014. Searches were refined to include peer reviewed journal articles published

in the last twenty years, between January, 1994 and December, 2014.

Key words for each search attempt were ‘anorexia’, ‘nervosa’ and ‘inpatient’. To enhance the

likelihood of finding further relevant sources, “anorexia” AND “nervosa” were then combined

with the following terms in various combinations: experience, personal, subjective, perspective,

view, inpatient, involuntary, hospital, coercion, compulsory, and control.

Titles were assessed regarding their relevance to anorexia nervosa and the inpatient treatment

experiences of clients. Abstracts were then assessed for relevance. The reference lists of each

relevant article were then searched for other potential sources. In total this strategy identified

eight articles relevant for the second stage of review.

Inclusion Criteria

Qualitative studies of participants who have been clinically diagnosed with AN, including both

restricting and binge eating/purging AN subtypes, were selected for review. Participants could

either be within inpatient treatment at the time of the study, or be providing retrospective

accounts of past inpatient treatment. Sources were required to be peer reviewed journal articles,

presenting original research and available in English. No restrictions were placed on participant


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age, gender, AN chronicity or duration of treatment. Due to the limited Australian research

available, international research was included.

Exclusion Criteria

A majority of sources yielded by the search terms were excluded, often due to their focus on

other treatment regimes, such as outpatient services, day programs, family and group therapies.

Studies of other eating disorders or mixed eating disorder groups, such as Binge Eating Disorder,

or AN and Bulimia, were also excluded from this review.

Studies focusing on clinical treatment outcomes, such as weight, rather than personal experiences

of the treatment itself were also excluded. Studies including the subjective experiences of others

to inpatient treatment, such as nurses and doctors, were also excluded from review.

Data Extraction and Yield

Across all three databases, eight articles were identified as relevant for full-text evaluation and

analysis. Reasons for excluding the majority of articles the search yielded included were: having

a focus on eating disorders in general or others (rather than being AN specific), studying the

clinical outcomes rather than subjective experiences of treatment, studying treatment

environment other than inpatient, and/or for studying the experiences of others instead of the

client with AN.

KEY FINDINGS

Control


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The concept of control and the challenges experienced by clients in negotiating new levels of

autonomy with their eating disorder and their treatment environment, were identified as major

themes within the literature. Several studies reported positive client experiences of handing over

control to their treatment team. Participants reported a loss of personal control to their AN prior

to treatment, experiencing a sense of relief from the responsibility of their disordered eating once

admitted to hospital (Smith et. al, 2014; Offord, Turner & Cooper, 2006). Overtime as weight

outcomes progressed, having gradual reductions in treatment restrictions and having greater

control over treatment choices were experienced as positive, empowering and helpful transitions

for recovery (Smith et. al, 2014).

While these examples demonstrate positive transitions of control, for other participants, having

to hand over the responsibility of their ED to others resulted in negative feelings and

experiences. Two studies reported re-feeding and mealtimes to be generally negative and

sometimes traumatic experiences, contributing to intense feelings of losing control and

powerlessness for some participants (Fox & Diab, 2013; Long, Wallis, Leung, Meyer, 2011). In

Offord et. al’s study, the early handing over of control was commonly experienced as helpful,

however as treatment progressed this was increasingly experienced as unnecessarily paternalistic

and over-controlling (2006). In the same study, having control removed in other areas of

treatment, such as restricted access to phones and family visits, exacerbated clients’ sense of

helplessness and inadequacy (2006).

Service decisions regarding the location and continuity of a client’s treatment were also

experienced negatively. Participants reported feelings of uncertainty, rejection and abandonment

when they were moved on to other units (Fox & Diab, 2013; Ross & Green, 2011). Having to


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regain personal control over their AN and prepare to leave the security of inpatient treatment was

experienced by some participants as difficult and frightening (Ross & Green, 2011).

Staff-client relationships

All eight articles emphasised the importance of positive staff-client relationships and the

influence these may have upon the inpatient treatment experience. Across studies, participants

highly valued supportive staff, who were able to demonstrate empathy and understanding

towards the difficulties of their illness and recovery (Smith et al, 2014; Fox & Diab, 2013;

Colton & Pistrang, 2004). Supportive staff qualities were found to increase clients’ engagement

with treatment, by promoting help seeking behaviour and disclosure (Smith et al, 2014), while

also helping clients’ to realise their self-worth and the value of depending on others in times of

need (Ross & Green, 2011).

Inconsistencies in staff knowledge and approaches to AN clients were experienced negatively.

Participants reported that staff often failed to provide adequate reasoning for certain practices,

leading participants to feel upset, confused and frustrated (Offord et. al, 2006). Particular staff

were viewed as more lenient than others when enforcing meals (Long et al, 2011), and as more

easily manipulated by participants (Boughtwood & Halse, 2010). Participants in one study also

highlighted the issue of experiencing ‘pampering’ by certain staff (Gulliksen, Espeset, Nordbo,

Skarderud,Geller, Holte, 2012). Although participants wanted to experience acceptance and

understanding from staff, being treated over-sympathetically was experienced negatively, as a

reinforcer for some ED behaviours and counter-productive to recovery (Gulliksen et. al, 2012).

Across studies, participants emphasised the importance of perceived professional knowledge and

expertise within their treatment team, alongside their ability as clients’ to realise who does or


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does not possess experience in AN treatment. Having trust and belief in the expertise of staff was

expressed as critically important to participants’ sense of being effectively cared for (Fox &

Diab, 2013). In Gulliksen et. al’s study, participants valued expertise as a preferred characteristic

in health professionals (2012). Participants linked expertise to previous clinical experience with

AN clients, and felt that these professionals were able to better help participants to understand,

manage and accept themselves (Gulliksen et. al, 2012). Adolescent girls in Boughtwood and

Halse’s study viewed previous AN experience in doctors as essential, feeling scepticism towards

younger doctors and new graduates involved in their treatment. As one participant recalls “He

said he had a lot of experience with eating disorders even though he looked about 10, heh, heh,

no about 20 or something, like straight out of College sort of thing. So I was, I was really

sceptical...” (research participant, as cited in Boughtwood & Halse, 2010). In order to feel

understood in an environment where genuine, effective treatments for their AN could take place,

participants required staff to demonstrate professional capacity and experience.

The importance of being viewed as a person

Being viewed and treated by staff as a unique person, rather than an AN diagnosis, was a

common wish and challenge for many of the studies’ participants. Participants who disclosed

concerns regarding aspects of their treatment, such as being watched while eating, reported

unsympathetic staff responses that dismissed their disagreement as symptom expression of AN,

rather than a genuine complaint to address (Long et al, 2011). As a participant in Colton &

Pistrang’s study illustrates, “it’s just like everything’s anorexic and everything you do’s

anorexic…everyone always says you can’t trust an anorexic.” (2004, 312). Feeling judged and

stereotyped by staff caused participants to feel rejection and a lack of identity (Gulliksen et. al,

2012).


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Across studies, participants expressed their approval for individualised care, with concern

towards inflexible practices that generalized AN clients rather than taking into account personal

differences and preferences. Some participants reported being monitored by staff when using the

toilet in case of purging or exercising, despite having no history or urge to demonstrate these

behaviours (Boughtwood & Halse, 2010, Offord et. al, 2006). Participants also emphasised the

importance of treatment to address not only address the physical symptoms of their AN, but also

the underlying psychological issues (Smith et. al., 2014; Offord et. al, 2006). Individual

counselling sessions were felt to be essential and helpful to recovery, yet for most participants’

access to this therapy felt irregular and limited (Colton & Pistrang, 2004; Smith et. al., 2014).

Battle grounds vs collaborative environment

Experiencing inpatient treatment as a battle ground was a common theme found within the

literature. When treatment was perceived as rigid, un-collaborative and over-controlling,

participants were more likely to demonstrate resistance to treatment (Offord et. al, 2006).

Participants described the experience of constant conflicting thoughts towards their AN,

treatment and recovery as a continuous internal battle (Long et. al, 2011). Participants expressed

their desire to comply and recover with treatment, alongside wanting to actively resist and rebel

(Colton & Pistrang, 2004). As a seventeen year old girl explains “…Some days I just think, just

do everything that’s required…But then other days I’m just battling against this place” (research

participant, as cited in Colton & Pistrang, 2004, 313).

Collaborative approaches to care were valued by participants. In providing ideas for service

improvement, participants in Long et. al’s study commented on the lack of collaboration they

experienced, requesting they be given more active roles and responsibilities in future decision


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making (2011). Participants believed they were capable of collaboration in menu design and

cooking, and that these shared responsibilities would prepare them better for life outside of

inpatient treatment (Long et. al, 2011). Contrastingly, most participants in Colton and Pistrang’s

study felt that although aspects of their treatment was collaborative and that they would like

greater responsibilities, they also expressed greater self-doubt and anxiety in their own capacity

(2004).

Peer relationships: Vital support vs unhelpful influence

Peer relationships within inpatient settings were identified as a vital yet contradicting source of

support for many participants across most studies.

Participants reported the isolating nature of their AN prior to admission, valuing the acceptance

and genuine understanding experienced among their peers in treatment (Smith et al, 2014). Some

participants felt less alone with a strong sense of peer identity and community (Offord et. al.,

2006). Through positive peer interactions and shared learning of effective coping skills,

participants reported a sense of hope towards their recovery (Smith et. al, 2014). Having the

freedom to discuss AN with peers provided participants with a strong sense of relief and

acceptance (Colton & Pistrang, 2004).

While these experiences can be viewed as positive influences upon a client’s wellbeing and

recovery, participants also expressed concerns towards the impacts of exposure to peers in

treatment. Some participants felt more aware and vulnerable to negative peer influences upon

their behaviour than others (Smith et. al., 2014; Offord et. al., 2006). Frequently comparing their

physical appearances and behaviours with peers led some participants to demonstrate

competitive ED thoughts and behaviours. Participants in Long et. al’s study reported a sense of


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rivalry between peers, with attempts to be the slowest eater during supervised mealtimes (2011).

Participants in Colton & Pistrang’s study felt competiveness to be the thinnest among their peers,

as illustrated by a young girl, “…A lot of people come in here and it’s sort of like who’s the best

anorexic.’(Colton & Pistrang, 2004, 311). These comparisons sometimes led participants to

question the severity and relevance of their own AN diagnosis (Smith et. al., 2014; Long et. al.,

2011; Offord et. al., 2006), while increasing participants’ sense of being watched and scrutinised

(Long et. al., 2011)

Comparisons to newly admitted clients often led to feelings of guilt and greed during re-feeding

treatment (Smith et. al., 2014, Offord et. al., 2006), however for some participants in the later

stages of recovery, these comparisons were found helpful as motivation to continue treatment

and avoid regression (Offord et. al., 2006).

Exposure to peers in distress was commonly experienced negatively and viewed by participants

as hindering to their recovery. Living alongside distressed and unmotivated peers made some

participants feel conflicted in wanting to provide support, while also wanting to stay focused on

their own personal recovery (Smith et al, 2014). Observing others in distress caused participants

to feel frightened and disturbed, with self-harm incidences creating fear for the safety of oneself

and others (Colton & Pistrang, 2004). Some participants reported learning new eating disordered

behaviours from their peers (Long et al, 2011) and adverse coping strategies, such as self-harm

(Colton & Pistrang, 2004; Offord et. al., 2006).

DISCUSSION

Implications for social work practice


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The findings of this review highlight important implications for contemporary mental health

social workers and professionals to consider in their practice.

A central issue voiced by participants was their desire to be viewed as unique people, rather than

simply as an illness by their treatment team. While some reported feeling understood by

particular empathic staff and in some units more than others, findings suggest that overall,

feeling misunderstood and stereotyped are common experiences for many AN inpatient clients.

The influence of the biomedical model of health may partly explain the development of such

attitudes held by staff towards AN clients. As Kendall & Hugman argue, much of the debate

concerning the ethical treatment of AN clients has been dominated by biomedical understandings

and discourses of the illness (2013). Through a biomedical perspective, explanations for the

development and maintenance of illnesses such as AN lie within the individual, rather than the

family or society (Russell-Mayhew, 2007). A lack of staff empathy towards the difficulties

experienced by AN clients in treatment, may then be linked to a prevailing assumption that the

individual is at fault and responsible for their current condition.

Although several participants across studies emphasised the need for services to address the

underlying psychological issues of their disorder, and expressed their desire for greater access to

individualised therapy, participants experienced inpatient treatment as being primarily focused

on the physical aspects and symptoms of AN. Weight restoration was experienced as the key

outcome of treatment, despite participants experiencing significant psychological, emotional and

behavioural difficulties. As Fedyzyn & Sullivan suggest, the strong focus on symptoms typical

of AN treatment services reflects the biomedical model’s rigid definition of illness, as being the

presence of irregularities or deficits in human functioning that must be corrected (2007). By


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pathologising the individual, attention can be taken away from the social and cultural forces

outside of the individuals’ control, that create and maintain the conditions in which AN can

manifest and thrive (Richmond, 2001). Important short term goals of weight gain and medical

stability can be achieved during inpatient admission, yet when we consider these physical

outcomes alongside higher rates of relapse and readmission, alongside the call from participants

to access more therapeutic interventions as inpatients, the efficacy of a medical focus in

supporting meaningful recovery for individuals with AN is questionable. It is important that

social workers continue to be critical of the factors which client and professional knowledge are

created and sustained by, and the disempowerment that may be experienced by vulnerable

groups as a result.

A diagnosis of AN may impact upon professional attitudes and judgements regarding a client’s

competence and decision making capacity, influencing the importance placed on client

experiences, knowledge and participation in the treatment process (Kendall & Hugman, 2013).

Establishing and maintaining a therapeutic alliance is an important goal of all social worker-

client interactions. While the quality of relationships with staff was identified as a key influence

on client experiences of treatment, the inpatient environment can be viewed as a challenging

arena for alliances to form and grow. The increasing focus of contemporary psychiatric settings

to manage and reduce risk, rather than to provide individualised, therapeutic care, directly

impacts upon the availability of social workers and other staff to build trust with clients and

families (Kendall & Hugman, 2013). The dynamic and high-risk environment in which AN

inpatients are treated - in which death can be a very real outcome - further exacerbates the

conflicting pressures staff may experience in wanting to provide clients with more power and


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autonomy in their treatment, while also wanting to protect clients from the genuine dangers of

AN.

Treatment refusal is widely accepted as a defining clinical feature of AN (Gans & Gunn, 2003;

Swain-Campbel et. al., 2001; Tan, Hope, Stewart, & Fitzpatrick, 2003, cited in Fedyzyn &

Sullivan, 2007). This expert knowledge can then be used to invalidate negative client

experiences of treatment. For example, a participant in Long et al’s study reported to staff the

common human experience of discomfort whilst being closely watched during a meal “They said

I would say that,” (Long et al, 424, 2012) illustrates the lack of empathy and understanding

towards AN clients in voicing genuine concerns, only for their complaints to be minimised as

expressions of typical AN behaviour.

In contrast to the assumption that AN individuals are incapable of making rational, informed

decisions regarding their best interests in treatment, this review identified a range of highly

insightful and meaningful subjective accounts of inpatient clients with AN. Participants in

several studies identified times when they appreciated external decision making of their AN, and

times when they felt ready and eager to re-gain responsibility over their illness. Not all

participants rejected all aspects of inpatient treatment, and those who demonstrated resistance

were able to identify internal and external reasons for this behaviour.

Issues in negotiating power and control were identified as common experiences within the

literature. It is vital that social workers acknowledge the significant power imbalances clients’

may have experienced prior to admission, as a result of the stigma associated with their mental

illness, the isolating nature of AN and the constant internal struggle for control and identity

alongside AN. Providing clients with greater transparency regarding the directions of their


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treatment, correct information and opportunities to evaluate service experiences could greatly

assist clients’ in feeling respected and validated as people. As identified in the literature, clients’

appreciate access to opportunities that assist them to gradually build their confidence and levels

of control over their disorder, in preparedness for re-entering the real world and the

responsibilities this transition requires. Finding the right balance in handing over control to AN

clients has been identified as difficult and there are many inconsistencies in how staff and units

approaches this challenge. Inpatient treatment has the potential to empower clients in their

recovery, so long as efforts are continuously made to provide services that are empowering,

rather than reflecting the controlling, punishing nature of AN itself. Client participation in

making treatment decisions is central to the promotion of self-determination, autonomy and

empowerment of disempowered individuals in authoritarian settings (Kendall & Hugman, 2013),

and must be viewed more as a treatment priority and right for clients with AN, rather than an

option.

Limitations

Having an individual researcher may have increased bias throughout the review process. Ideally,

at least one other researcher would have participated throughout the process to negotiate areas of

ambiguity and contention.

By limiting study samples to AN clients treated as inpatients, findings cannot be generalised to

other eating disorder populations and treatment settings.

Due to time and resource constraints, other relevant sources have potentially remained

unidentified. Relevant articles not available in English and published prior to 1994 may have

been found if included. A more extensive search involving more than three databases and a hand-


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search of journals may have also yielded further sources for review, and further reduced database

bias.

This paper included clients of all ages. However as Smith et. al (2006) highlight, treatment

approaches used in adolescent inpatient services often differ to those used in adult, and these

differences may impact upon a client’s experience.

Research priorities

Finding qualitative research on the subjective experiences of clients’ during inpatient AN

treatment proved to be difficult, with this review identifying eight relevant sources in the last

twenty years, one being Australian. Much of the literature focused on the experiences of the

family or treatment team, usually from the perspectives of nurses’. While the views of all

involved in the AN treatment process are important to better understand and consider, the

experiences of the client continue to remain a largely unexplored and misunderstood area.

As highlighted, staff and peer relationships are of significant influence in the treatment

experience of inpatient AN clients. Although several qualitative studies of nurses and doctors

were identified, further research that expands upon these studies and investigates a wider range

of professions, including social work, could enhance our understandings of clinician experiences

in multidisciplinary, inpatient AN treatment.

A significant lack of research focusing on males with AN is evident in the literature. In all eight

articles, only females featured as participants. While the incidence of AN in males is much lower

than females, increasing prevalence is being discovered in both groups (Russel-Mahew, 2007).

The unique experiences and challenges for male clients, within a primarily female diagnosis and

treatment environment, could therefore be an important endeavour for future research to address.


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Expanding upon the qualitative studies identified in this review could further assist the

development of more effective services for AN individuals in the future. Further local and

international research into the experiences of AN clients could expand upon the findings of this

review.

CONCLUSION

For many individuals treated for AN, there are a range of positive and negative experiences

within the inpatient treatment environment. Positive experiences of inpatient treatment were

possible when participants’ felt understood by empathic, knowledgeable and flexible staff. When

facilitated gradually and transparently, transitions of control, from being controlled by AN - to

handing control over to staff - to regaining control in preparation for discharge, enabled

participants to feel empowered and able to depend on others to support them. Living alongside

peers undergoing treatment for the same diagnosis, helped participants to feel less isolated. Peers

were able to provide participants with new effective ways of coping with their AN, and non-

judgemental support during treatment. These positive experiences and strengths may be built

upon to further enhance the effectiveness of inpatient treatment in fostering meaningful recovery

and relationships.

Negative experiences reported by participants raise serious concerns for the recovery and

wellbeing of inpatient individuals. Being stereotyped and judged staff lead to feelings of

frustration and disengagement from treatment. Some individuals’ made valid requests or

complaints to staff, only to have these comments minimised as expressions of AN symptoms.

Participants reflected on the importance of others stepping in and taking control over their AN

during times of distress and danger. Over time, however, staff control was often experienced as


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oppressive and punitive, rather than necessary and reflective of individual progress in treatment.

Across studies, participants valued the opportunity to participate in therapies that addressed their

AN holistically, and collaborative approaches to their treatment. Access to these, however, was

mostly experienced as limited during inpatient treatment. Participants reported the negative side

of peer inpatient relationships, with exposure to distressed and self-harm experienced as

disturbing and hindering to individual recovery. Participants would often engage in or observe

competitive behaviours among their peers, increasing their sense of being judged, watched and

delayed further in their pursuit of recovery.

In identifying these range of experiences, it is evident that the inpatient environment is a

complex and challenging setting for individuals with AN, with the potential to generate both

positive and negative client experiences. Social workers and all inpatient treatment staff have a

responsibility to better seek and validate the perspectives of every individual client they

encounter within their practice.

Documents

Client experiences of involuntary treatment for anorexia nervosa. A review of the literature and implications for social work practice