Recovery from eating disorders: a role for occupational therapy.

Since deinstitutionalization in the 1970s, the role of occupational therapists working with people with eating disorders (ED) has changed. Traditionally occupational therapy intervention related to an ED has been in inpatient settings; however, the current health climate has led to more community based treatments, meaning clinicians have to adapt their practice. Occupational therapists have the skills and creativity, and a unique perspective of occupation to support recovery from ED. Through the use of meaningful occupation, client centredness, community collaboration and pushing the boundaries of what activities are 'realistic', occupational therapists can promote hope, meaning and purpose in life. This article reviews the current literature with the following questions in mind: What is the impact of an eating disorder on occupational performance, and therefore on recovery; What is the role of occupational therapy in an eating disorders service?

Impact of eating disorders on occupation

Approximately 1.7% of New Zealanders are diagnosed with an eating disorder at any one time. These include anorexia nervosa (an illness of self starvation, with extreme fear of fatness, worthlessness and powerlessness); bulimia nervosa (involving binging and purging behaviours) and eating disorders not otherwise specified. Occupational performance issues in ED are global, affecting all areas of life from preparing meals, shopping, carrying out the demands of work or study, and managing difficult emotions when socialising with friends and family (Gardiner & Brown, 2010; Karpowicz, Skerseter, & Nevonen, 2009; Reiss & Johnson-Sabine, 1995). Self care routines can be disrupted by an inability to look after personal needs due to negative thoughts or body image problems, for example inability to look at or touch one's own body leading to difficulty with getting dressed (Goldberg, 1997).

Low body weight affects the person's ability to think clearly. Poor attention, concentration and memory are common side effects of starvation (Breden, 1992) and make engagement in occupations such as work or study difficult. Starvation increases obsessional thinking, thus increasing anxiety with a subsequent focus on weight, resulting in a spiral of weight loss and decreased functioning (Lawson, Waller, & Lockwood, 2007). Costa (2009) described the frightening experience of supermarket shopping, agonizing over what to buy for lunch, obsessional checking of food labels and extreme rigidity in routines; making simple tasks take hours instead of minutes. The flow-on effect of time use is detrimental to sustaining other activities. If one spends too long

in the supermarket it means less time in the day for work, friends, and other meaningful activities creating occupational imbalance similar to people with other chronic mental illnesses (Costa, 2009; Eklund, 2009; Sutton, 2008). Some clients will over-exercise every day leaving no room in their life for anything else (Lawson, et al., 2007).

A distorted perception of body image also impacts on time use and the desire to socialise. Clients with ED often find they do not know what activities they enjoy and so they have difficulty having fun (Gardiner & Brown, 2010). Many authors have commented on the poor social skills of clients with ED, especially in food-related situations (Gardiner & Brown, 2010; Giles & Allen, 1986; Kloczko & Ikiugu, 2006). Family meals can become times of extreme conflict and distress (Reiss & Johnson-Sabine, 1995) thus, difficulty engaging in social roles and occupations is prevalent for this population of mental health clients. Family members can also hold specific expectations for the client about the roles they should fulfill, which sometimes upholds the illness; for example, when the parental relationship is deteriorating and the ED acts as a buffer (Henderson, 1999).

Furthermore, parents or siblings reactions, which may initially have been functional and even necessary (such as prompting the young person to eat), have the potential to become maladaptive over time (created dependency). Often these patterns develop out of necessity, for example overspending on food for binges leading to loss of role and responsibility (Gardiner & Brown, 2010). The occupational impact on family members and wider society of clients with ED should not be ignored. Often because of exceptional care-giving demands, family members are also compromised in their ability to be autonomous, financially secure, and to participate fully as active members of their community (Krupa, Fossey, Anthony, Brown, & Pitts, 2009).

Recovery from eating disorders: An occupational perspective

The New Zealand Blueprint for Better Mental Health Services (Mental Health Commission, 1998) stated that "people working in the mental health system must use a recovery approach in their work" (p. 16). Anthony (1993), a noted author in recovery literature, defined recovery as:

   A deeply personal, unique process of changing one's
   attitudes, values, feelings, goals and roles. It is a way of
   living a satisfying, hopeful, and contributing life even
   with the limitations caused by illness. It involves the
   development of new meaning and purpose in one's life as
   one grows beyond the catastrophic effects of illness. (p. 18)

However, this is just one opinion. The literature defined recovery in multiple ways. For example, a recent New Zealand study argued recovery is being three years symptom free (low weight, dieting, binge-eating and compensatory behaviour) with no acknowledgement of occupational performance issues (Holle, et al., 2008). With regards to ED, Bardone-Cone, et al. (2010) stated that including "physical, behavioural and psychological indices into a definition of recovery is still far from the norm" (p. 195). In addition, the World Health Organisation's guidelines highlight important elements of recovery from ED and defined recovery as "when individuals with a history of an eating disorder appear indistinguishable from healthy controls" (Bardone-Cone, et al., 2010, p. 195), thus showing potential for a broader definition.

For recovery to occur, certain elements must be present including: hope, healing, empowerment and connection; all of which resonate with the goals and ideals of occupational therapy (Jacobson & Greenley, 2001 ; Pitts, 2004; Yerxa, 1998). Hope is about believing that recovery is possible and therapists offer hope by enabling experiences that support goals and interests for the future. Healing emphasises the person's active participation in deciding what their end point will be apart from their illness, and having an element of control over the recovery process. From this perspective, health is consistent with the occupational therapy concept of client-centeredness (Wilcock, 1998). Recovery in ED is not about eating or obeying accepted rules of behaviour; rather recovery involves empowering the client to drive the process of change (Anthony, 1993). Finally, connection is the acknowledgement that recovery is a "profoundly social process" (Jacobson & Greenley, 2001 p. 484). This can be aligned to the methods used by occupational therapists to engage clients in social activities such as group therapies, involving friends and family, and supporting the development of social skills in the community context.

Scientifically controlling and measuring the impact of ED on psychosocial and occupational functioning is regarded as difficult (Bardone-Cone, et al., 2010; Keilhofner & Forsyth, 2007). This is in part due to the range of internal and external factors, such as unique skills, experiences, family, or environmental factors that influence occupation. ED research that has attempted to acknowledge occupational issues in recovery outcomes have utilised quantitative measures such as marriage or employment, rather than the qualitative issues of adjustment to daily living or ability and confidence to function (Bardone-Cone, et al., 2010). However, if as Anthony (1993) argued, collaboration and autonomy are important in recovery, then using a tick box approach to occupation does not allow variation in client's outcomes for recovery. An occupation excluded from the list would not be considered by the researcher even if it was the client's most important goal. Nevertheless, outcomes from this style of research have indicated ongoing problems (for example) in relationships and social networks, even after weight restoration and psychological recovery has occurred (Striegel-Moore, Seeley & Lewinsohn, 2003 cited in Bardone-Cone, et al., 2010).

Feigenbaum (2009) took a holistic approach to recovery from ED, and utilised qualitative narratives to study how engagement in community causes (political or spiritual) enabled clients with ED to recover. They found that clients who participated in political and/or spiritual causes, such as women's rights or church services, found the motivation and hope to give up their reliance on ED and begin the path to recovery (Feigenbaum, 2009). Although this research was not conducted by occupational therapists, it closely addresses the interests of occupational therapists as it uncovers the ways in which purposeful occupation supports recovery apart from psychological and physical treatment.

There has been little research conducted by occupational therapists regarding the occupational experience of a person with ED during recovery (Gardiner & Brown, 2010). Recently, Sutton (2008) explored the phenomenon of occupation in clients with mental illness, and the meaning of occupation as part of their recovery process. He found that 'doing' (participating in occupation) was the primary medium by which clients rediscovered their sense of self or identity in the world (Sutton, 2008). Although this study was not specifically focussed on the area of ED, Sutton's work validates therapists using occupation to support recovery in ED clients. Sutton found that 'doing' was a desired outcome for recovery, which implies that it should be part of the recovery process.

Other literature documenting the recovery stories of groups and individuals, also emphasises occupation in the recovery process. For example, Bratland-Sanda et al. (2010) described the process of re-framing exercise from a dangerous routine to a necessary part of maintaining some quality of life for a person with chronic illness. Patching (2008) analysed the journeys of 20 women recovering from ED from a nursing perspective. She described how recovery occurred when the women re-engaged with life, developed social skills (particularly resolving conflict), and rediscovered their own identity (made up of their unique personality, roles and interests, primary elements of occupation) (Patching, 2008). This research adds weight to the argument that contribution of occupation is essential to recovery for ED clients. A disadvantage of having other disciplines doing this kind of research is that the occupational language (and emphasis) is lost, and there is a continued focus on psychological or behavioural change (symptoms). What is more, although other professions may recognise the value of occupation, there is a lack of research addressing how engagement in occupation supports the various elements of recovery. This may include a change of roles, interests, and identity. As a result there is a significant gap in enabling the recovery process from ED.

A role for occupational therapy in supporting recovery from eating disorders

The literature agrees that the "philosophical foundations of occupational therapy are highly consistent with the elements of recovery"(Krupa, et al., 2009, p. 160). Both promote hope and encourage clients to develop themselves apart from the illness. They value social engagement, support learning of skills to manage symptoms, address dealing with stigma and becoming a functioning member of society. These concepts encompass core values of the recovery process, and are also integral to occupational engagement (Davidson, Sells, Sangster, & O'Connell, 2005; Krupa, et al., 2009). Given the alignment between occupational therapy philosophical foundations and elements of recovery, it is clear that there is a role for occupational therapists to support recovery from ED.

Issues about assessment of occupational performance

The question of how occupations can be used for recovery, or maintenance is one of the primary goals of an occupational therapy assessment (Kloczko & Ikiugu, 2006). Enabling occupation involves assessing strengths and reducing barriers, identifying possibilities and then supporting clients to take graduated steps towards recovery (Gardiner & Brown, 2010). However, there are unique difficulties in assessment because of the way in which occupation may be used to maintain the ED (Abeydeera, Willis, & Forsyth, 2006). For example, some activities are physically contraindicated because of the amount of energy required for a client who has low weight. If the occupation expends too much energy, the client's choices may reflect the illness rather than recovery (Abeydeera, et al., 2006). Hence, in the context of client centred practice, leisure activities such as exercise or sport (common areas of interest in New Zealand) present an ethical challenge when voiced as the client's choice (Henderson, 1999).

Client centred thinking implies the client's aims and aspirations are a priority for the therapist who needs to collaborate with the client to support personal recovery goals. In ED this may mean the therapist is faced with balancing a client's choice of goals, while being aware of physical safety. Thus, an occupational therapists' skill at assessing the motive behind the choice of occupations can enable a client to become increasingly aware of the rationale for action in relation to what they do. The complexities of occupational performance are the key to creating opportunities for occupational therapy intervention.

Treatment priorities supporting recovery

Knowing that recovery is a collaborative process means the client's perspective of recovery is essential. Hence the question: do clients consider occupation important to their own recovery? The answer to this question has only recently been investigated by Vanderlinden, Buis, Pieters, and Probst (2007) who compared therapists' and clients' views of what the necessary ingredients were in the recovery process. Strikingly, occupational therapists were not among the clinicians consulted, despite many of the priorities identified being occupational in nature. The researchers identified 20 different goals of treatment and found no significant differences between clients and therapists. Of the first five priorities identified, it could be argued that four are closely linked to occupation: self esteem, body experience, problem solving, and enhancing motivation to give up the eating problems. Self esteem was identified as the most significant priority by both clients and therapists. The discussion below considers the role of occupational therapy in addressing low self esteem as part of the recovery process for ED clients.

Self esteem

Self esteem is important in recovery from eating disorders (Halvorsen & Heyerdahl, 2006; Karpowicz, 2009; Wilksch, 2004). Rosenberg (1989) cited in Karpowicz (2009) defined self esteem in very occupational terms: "how the person regards his or her capacity to do things, and the value he or she ascribes to him/ herself" (p. 319). Occupational therapists are concerned with a person's ability and satisfaction in doing things (Krupa, et al., 2009); therefore, part of occupational therapists intervention supporting recovery from ED may also involve addressing an ED client's self esteem.

Karpowicz (2009) found a direct correlation between improved self esteem and recovery from anorexia in a study that was undertaken in a hospital ward where occupational therapists were identified as part of the multidisciplinary team. Furthermore, Karpowicz (2009) argued that participating in activities helped clients to reinforce their self esteem. These activities included eating in restaurants, shopping, and engaging in leisure activities like going to the movies, in the community. All of these activities are commonly facilitated by occupational therapists in a recovery programme (Bailey, 1986; Breden, 1992; Costa, 2009; Karpowicz, 2009; Kloczko & Ikiugu, 2006; Sutton, 2008).

Yet, the skills and knowledge of occupational therapy are typically sidelined in research. For instance, the role of the occupational therapist in Karpowicz's (2009) study was summed up as: "management of anxiety through creative activity" (p. 321). Although different disciplines work towards the same goal, the methods are different. For example, psychologists and social workers were described as assisting clients to cope with anxiety through compensatory behaviours (Karpowicz, 2009), how they do this was not defined. Alternatively, other researchers have shown that occupational therapists use occupations to address self esteem by enabling clients to experience success (Breden, 1992; Kloczko & Ikiugu, 2006). Breden (1992) stated that by grading the challenge of any given task, an occupational therapist ensures the client experiences success by degrees. For example, the first step in clothes shopping might be going out in public and walking down the street. As a client's confidence increases, so too does their belief in their capacity to do things. For example, choosing to purchase an item of clothing. This growth in ability is central to self esteem (Karpowicz, 2009).

Some qualitative research has been conducted into the recovery of clients' self esteem in ED. An Australian study revealed that clients "rediscovered their sense of self" through re-engaging with activities of life (Patching, 2008, p. 10). The Australian women in this study described their recovery as being able to feel a sense of control over their lives and to enjoy an improved sense of self through a journey of experiences (occupational engagement) (Patching, 2008). This endorses the occupational therapy approach of creating social and community connections through occupation. Clients also identified their need to determine the pace of their own recovery (Patching, 2008). These ideas fit with the theoretical frameworks of occupational therapy which emphasise client-centeredness and autonomy (Breden, 1992; Henderson, 1999; Yerxa, 1998).

In a personal narrative account, Megan Axelsen (2008) described the way in which her dysfunctional use of exercise transformed into a leisure activity that enabled her to become free of anorexia. Re-shaping the activity into something that gave Megan a sense of satisfaction and success, enabled her to let go of her drive to exercise only to lose weight, by degrees. Engaging in triathlons gave Megan a positive self-concept through a connection to other like-minded individuals. It was a reason to persevere, and gave her a sense of purpose (Axelsen, 2008). This would suggest that a leisure occupation, even one based around exercise, may be a useful intervention to enhance self esteem, and promote recovery in ED. Thus, the role of an occupational therapist could be to provide opportunities, and the right environment, for clients to practice both familiar activities and new activities, and thereby to achieve enhanced self esteem in a graduated way.

Recommendations for research to support practice

Eating disorders globally affect a person's ability to perform occupations, thus occupational therapists have a role to play in supporting ED clients in recovery. Research into the experience, and role of occupation in ED recovery, is needed to better understand the potential for occupational therapy in this process. Equally, a research project designed to address the occupational functioning of clients after physical, psychological and behavioural recovery is required, as little is known about the long term occupational outcomes for ED clients. Although there is some acknowledgement of ongoing problems with social skills and relationships, there does not appear to be any current research on this issue. Such a study would go some way towards filling gaps in knowledge and understanding of how best to support long term occupational recovery. Building this area of research would also provide evidence that could be used to promote the role of occupational therapy in supporting recovery from ED.

Eating disorder services have become more specialised and are usually community based. Likewise, occupational therapy practice primarily takes place within the community. Earlier research addressed hospital inpatient strategies. With occupational therapists as key members of a multi disciplinary team, research investigating service development in the community, with a focus on how to support clients to link with their community would be informative.

Currently, few occupational therapists are employed within ED in New Zealand (Mental Health Commission, 1998). If occupational therapists advocate for the occupational needs of ED clients, then this scope of practice will expand. Supported employment, community support groups, and self help programmes all need to become more accessible and informed by occupational therapists to shape service delivery and create opportunities for occupational engagement that supports the recovery process.

Conclusion

In New Zealand there are few occupational therapists with specific training in ED. Yet, this paper has argued that occupational therapy has a strong part to play in supporting clients' recovery from ED. At present, services for clients with an ED are undergoing a change process. As services are transformed to become more specialised and community based, there is increasing opportunities for occupational therapists to have input to service development. However, there is a dearth of occupational therapy research into occupational issues in recovery from ED. This is needed to better understand the role of occupation in recovery and to justify occupational therapy interventions with this significant population of mental health clients.

Key points

* Eating disorders globally affect a person's ability to perform occupations

* The philosophical foundations of occupational therapy are aligned to the elements of recovery

* Occupational therapists have a key role in supporting ED clients in recovery

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Corresponding author:

Maree Clark, BHSc, PGDipCBT, PGDip (Occupational Practice)

Private Bag 93311, Otahuhu

Auckland 1640

Email: [e-mail]

Dr Shoba Nayar, PhD

Faculty of Health & Environmental Science

Auckland University of Technology