Introduction: 

Welcome to the thirty-second edition of the NEDC e-Bulletin.

In this edition we're exploring issues related to recovery oriented practice including a preview of an upcoming NEDC resource focusing on the role storytelling can play in eating disorders recovery.

If you are interested in getting more involved in the NEDC we encourage you to join the collaboration and become an NEDC member.

Contents

1. Feature Article: Recovery Oriented Practice

2. Consumer Participation: Stories from Experience

3. Interview: Story-telling in recovery

4. Upcoming Event: ANZAED 2015

There are many different ways in which an individual with an eating disorder can access help, support and treatment.

However it is important to remember that there is not one solution that suits all and it is imperative to consider and apply the perspectives of patients themselves, as they are the ones who decide whether and how they engage in treatment and work towards recovery (Yu, Agras & Bryson, 2013).

The treatment that is chosen will depend on a variety of factors, such as the type and severity of the eating disorder, along with the person’s age, family situation, relationships, mental condition, physical condition and social issues. To assist the individual in identifying an appropriate treatment strategy, which addresses these areas, individuals and their families need opportunities to discuss safe, evidence based treatment pathways, including the empirical support, research findings and expert consensus behind various treatment options (Hay et al., 2014). Treatment choices should, wherever possible, be informed decisions made with the person and their family if family involvement is appropriate (Hay et al., 2014). This type of approach is called Person-Centred care and it is the most effective way to treat someone with an eating disorder (Hay et al., 2014).

One of the ways that a person-centred approach can be integrated into the treatment process is to work from a recovery-oriented mental health model. The recovery model is described as “a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills, and/or roles. It is a way of living a satisfying, hopeful, and contributing life, even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.” (Anthony, 1993 cited Frese et al. 2001).

In the recovery-oriented model of practice, the terms ‘recovery’ and ‘cure’ are not synonymous. Rather, recovery refers to both internal conditions experienced by persons who describe themselves as ‘being in recovery’ or ‘on a journey of recovery’ – hope, healing, empowerment and connection – and external conditions that facilitate recovery – implementation of human rights, a positive culture of healing, and recovery-oriented services (Jacobson & Greenley, 2001). The primary focus of recovery is therefore not the cessation of certain attitude(s) or behaviour(s), but rather recovery is viewed as a tool to support people in sustaining self-identified, purposeful lives and identities (Andresen et al., 2003; Anthony, 1993; Schrank & Slade, 2007).

The recovery-oriented model of practice is considered best practice in the treatment of eating disorders (Hay et al., 2014). In general, recovery-oriented modes of treatment aim to support individuals in taking responsibility for their personal journey of recovery and offer a collaborative holistic framework to work within.

More specifically, according to the Royal Australian and New Zealand College of Psychiatrists Clinical Practice Guidelines for the Treatment of Eating Disorders (2014) implementation of recovery-oriented practice is about providing a framework that supports the recovery of mental health consumers in the following ways:

• recognises and embraces the possibilities for recovery and wellbeing created by the inherent strength and capacity of all people experiencing mental health issues
• maximises self-determination and self-management of mental health and wellbeing
• assists families to understand the challenges and opportunities arising from their family members experiences
• provides evidence-informed treatment, therapy rehabilitation and psychosocial support that helps people to achieve the best outcome for their mental health, physical health and wellbeing
• works in partnership with consumer organisations and a broad cross-section of services and community groups
• embraces and supports the development of new models of peer-run programs and services
• maximises choice
• supports positive risk-taking
• recognises the dignity of risk, i.e. the individual’s right to make treatment choices that the treating health care team might not see as being the most effective decision
• takes into account medico-legal requirements and duty of care
• promotes safety

In the recovery-oriented model of practice recovery is considered a personal process. The Australian National Mental Health Recovery Framework, published in 2013, is based on an understanding of recovery as a personal process and defines recovery as ‘Being able to create and live a meaningful and contributing life in a community of choice with or without the presence of mental health issues’ (Commonwealth of Australia, 2013). Taking a pro-recovery perspective, personal recovery means building a better future founded on whatever the person’s present circumstances may be, which means that every experience of recovery starts from a different place and leads to a different (personally defined) concept of recovery (Dawson, Rhodes & Touyz, 2014).

References

Andresen, R., Oades, L. G. & Caputi, P. (2003). The experience of recovery from schizophrenia: towards an empirically validated stage model. Australian and New Zealand Journal of Psychiatry, 37: 586–594.

Anthony, W. (1993). Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychosocial Rehabilitation Journal, 16 (4): 11-23 cited in Frese, F., Stanley, J., Kress, K., & Vogel-Scibilia, S. (2001). Integrating Evidence-Based Practices and the Recovery Model. Psychiatric Services, 52: 11. http://www.nasuad.org/sites/nasuad/files/hcbs/files/44/2150/frese2001.pdf

Commonwealth of Australia. (2013). National Mental Health Recovery Framework: Policy and Theory.

Dawson, L., Rhodes, P. & Touyz, S. (2014). The recovery model and anorexia nervosa. Aust N Z J Psychiatry, 48(11): 1009-16.

Hay, P., Chinn, D., Forbes, D., Madden, S., Newton, R., Sugenor, L., Touyz, S. & Ward, W. (2014). Royal Australian and New Zealand College of Psychiatrists clinical practice guidelines for the treatment of eating disorders.
https://www.ranzcp.org/Files/Resources/Publications/CPG/Clinician/Eating-Disorders-CPG.aspx

Jacobson, N. & Greenley, D. (2001). What is Recovery? A conceptual model and explication. Psychiatric Services, 52: 4.

Schrank, B. & Slade M. (2007). Recovery in psychiatry. Psychiatric Bulletin, 31: 321-325.

Yu, J., Agras, S.W. & Bryson, S. (2013). Defining recovery in adult bulimia nervosa. Eating Disorders: The Journal of Treatment & Prevention, 17: 1.

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Participation is a right of health service users and a key enabling strategy in improving health outcomes for the community. Participation is about being part of the process; more than observing and commenting on processes, it is about actual involvement in forums and the authoring of solutions (NHMRC, 2004).

The contribution of people with eating disorders and their families and carers is critical to the development of NEDC resources and reports. The National Framework for Eating Disorders (NEDC, 2012) identifies consumer and carer participation as an essential component in treatment decisions, in service planning, development and evaluation and in research.

One aspect of participation is the opportunity for people with lived experience of eating disorders to share their experiences, to tell their stories and hear the stories of others. Feedback collected by NEDC in 2010-2014 found that many people with lived experience of eating disorders are highly motivated to engage in peer support, raise awareness of the reality of eating disorders and contribute to the wellbeing of others by adding their story to prevention and advocacy initiatives. People with lived experience of eating disorders also described the powerful impact that sharing their stories had on themselves as well as on their audiences.

As a result of this feedback, the NEDC has produced and is in the process of piloting, a new learning resource called Stories from Experience, which is designed to help adults who have recovered from an eating disorder or are well on their way to recovery. The underpinning premise of the resource is that writing and strengthening connections with other people can be positive for personal wellbeing if approached in a constructive, safe and supported way. Sharing of stories may also enhance motivation for recovery in others and contribute to positive community awareness of eating disorders.

The Stories from Experience resource applies recovery-oriented practices by giving consumers the ability to share realistic and hopeful experiences of recovery.

While there is no single “correct” pathway to recovery from eating disorders, people with lived experience of eating disorders have identified several factors that contribute to recovery. Stories from Experience therefore promotes the following:

1. Connections: Making new social connections is the most common factor identified by people who have recovered from eating disorders (e.g. Espindola & Blay, 2009; Federici & Kaplan, 2008; Hay & Cho, 2013).
2. Motivation: The desire for recovery, expressed as a self-directed decision to recover has been identified by people with anorexia nervosa (Dawson et al., 2014; Federici & Kaplan, 2008; Hay & Cho, 2013) and bulimia nervosa (Reynen, 2012) as an important step towards sustained recovery.
3. Interests: People who develop activities, hobbies, interests and relationships beyond illness are better able to sustain recovery (BjöRk & Ahlström, 2008; Hay & Cho, 2013).
4. Expressing emotion: The ability to express emotions has been found to be an indicator of recovery from eating disorders (BjöRk & Ahlström, 2008).
5. Knowledge of recovery: Setbacks and relapses are part of the process and are not major obstacles to recovery. Individuals who understand that recovery is an ongoing process are more likely to be able to sustain their recovery in the long term (Reynen, 2012).

The Stories from Experience resource addresses these factors by helping consumers to understand the process of recovery, express their emotions, share their stories, develop personal interests and connect with others.

The resource is organized into 13 modules, which lets people set their own pace and select the modules that are personally meaningful for them. It can also be used in shared group activities for peer support, or by professionals organising peer support or consumer participation activities.

Stories from Experience is likely to be safest and most effective as a resource when people work through it together in a group or with a support person. Throughout the resource there is an emphasis on seeking appropriate help and on maintaining safety for self and others.

References

Björk, T. & Ahlström, G. (2008). The patient's perception of having recovered from an eating disorder. Health Care for Women International, 29(8-9): 926-944.

Dawson, L., Rhodes, P. & Touyz, S. (2014). The recovery model and anorexia nervosa. Aust N Z J Psychiatry Aust N Z J Psychiatry, 48 (11): 1009-1016.

Espíndola, C.R. & Blay, S.L. (2009). Anorexia nervosa treatment from the patient perspective: A metasynthesis of qualitative studies. Annals of Clinical Psychiatry, 21(1): 38–48.

Federici, A. & Kaplan, A.S. (2008). The patient’s account of relapse and recovery in anorexia nervosa: A qualitative study. Eur. Eat. Disorders Rev., 16: 1–10.

Hay, P.J. & Cho, K. (2013). A qualitative exploration of influences on the process of recovery from personal written accounts of people with anorexia nervosa. Women & Health, 53(7): 730-740.

National Eating Disorders Collaboration (NEDC). (2012). An integrated response to complexity: National eating disorders framework. Report to the Australian Government Department of Health and Ageing, March 2012.

National Health and Medical Research Council (NHMRC). (2004). A model framework for
consumer and community participation in health and medical rResearch, Commonwealth of Australia, December 2004, p9.

Reynen, E. (2012). Recovery from Bulimia: What helps in healing. Master of Social Work Clinical Research Papers. Paper 77. http://sophia.stkate.edu/msw_papers/77

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We spoke to Danielle Cuthbert about her personal lived experience of an eating disorder and the role of storytelling in her recovery. Danielle is a member of the NEDC and contributed to the Stories from Experience resource as a participant of the consumer advisory group.

What does storytelling mean to you?

Storytelling is a means of connecting - with one's self and others. It allows individuals to reflect on their own journey whilst also providing insight to those who are still recovering.

When I think of storytelling and its effect on me, I think of this mountain image.

A picture really says a thousand words. If one was to climb this mountain alone, it would be very frightening and motivation may diminish fast. This is exactly how the beginning of my recovery from Anorexia felt - I was scared, uncertain and de-motivated.

However, when you are able to connect with someone through their story, it is almost as though the journey isn’t as scary because someone is also on it. They may not be at the same stage of recovery as you are, but they are feeling/ have felt what you are experiencing. Their simple existence is comforting. Reaching the end no longer seems impossible.

What do you consider the role of storytelling is in recovery?

Storytelling is a source of truth for those recovering from eating disorders. It provides hope, insight, motivation, reassurance and a sense of belonging.

A common challenge faced when recovering from an eating disorder is the feeling that health professionals, family and friends 'do not understand' what you are going through. As a result, individuals can become apprehensive and hesitant to listen to their guidance and advice.

From my own experience, I found it very difficult to listen and accept advice from health professionals and family/friends. Because of this, I searched high and low for real stories where people had recovered- which unfortunately was very hard to come by. Many stories finished abruptly, almost as though the individual woke up recovered. This was very frustrating as recovery is definitely not 'smooth sailing'.

Eventually I came into contact with someone who had recovered from an eating disorder. She shared her story with me, and I with her. This was invaluable to me and was by far the best input in my recovery. You hold onto their experience and opinions as though it is gold because they have felt what you have and been in your exact position. I no longer felt alone. Seeing that someone had come out the other end and turned their life around was an incredible sense of hope and motivation.

Storytelling gives access to REAL people, REAL stories and REAL recovery. Storytelling makes the impossible seem possible.

Besides assisting in the recovery process, do you see any other benefits in telling your story?

Storytelling is an effective way to reduce stigma around mental health. Stigmatisation draws a direct correlation between shame and eating disorders; consequently encouraging individuals to ‘keep quiet’ about their illness. Storytelling can raise awareness of the high prevalence of eating disorders within Australia and encourage a more positive approach to the management of eating disorders. Individuals who share their stories in a larger public setting, are essentially the voice for all those who are suffering/ have suffered from an eating disorder.

Facing an eating disorder is challenging in itself, without having the burden of stigmatisation.

Although people tell stories independently and without guidance every day, in the context of recovery, why do you think it is important to have a resource that assists someone in telling their story?

Sharing stories related to a lived experience, particularly eating disorders, can pose several risks to both the teller and reader/listener. It can be traumatic for someone to share their experience, if they are not ready to do so, as it can bring back several negative feelings associated with this time. In addition to this, if too much detail is given regarding one's experience this may actually feed/ encourage another's eating disorder habits. It is for this reason, that guidance when sharing recovery stories is essential. This resource will allow positive story sharing to generate hope, motivation and support for individuals currently recovering from an eating disorder, regardless of what stage they are at.

Storytelling is a magnificent recovery strategy, however it is very important that guidance is given to ensure the action of storytelling is beneficial for all involved.

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