Jennifer Danby, Family Work Specialist and Wendy Whitaker, Senior Social Worker
South London and Maudsley Eating Disorder: London, UK
The New Maudsley Model (NMM) of working with adults with eating disorders recognises that living with a loved one suffering from an eating disorder can have a significant impact on the mental and physical health of family members. Furthermore, it recognises that families of adults with eating disorders are often excluded from treatment, yet we know that they usually want to be and are (actively) involved. The NMM understands that exclusion from treatment may be a result of the person with the eating disorder resisting carer involvement and that this can occur for a variety of reasons such as; not believing parents can help; previous experience of family therapy or the family being involved in treatment not going well; their own ambivalence about change. Whilst respecting confidentiality, our experience tells us that involving families throughout the treatment process can break the stronghold that the eating disorder can have on the individual and their families. Therefore, we aim to involve them from the point of admission with offering carers information packs, involvement in multi-disciplinary meetings and through various family interventions.
Creating a collaboration
Over many years the treatment team at the Maudsley hospitals have recognised the value and the need to include carers in the treatment process. By ‘carers’ we mean any significant person connected to the person displaying symptoms of an eating disorder, including parents, partners, siblings, children, extended family members as well as friends and other professionals.
Motivational Interviewing (MI) underpins the NMM. We feel passionate about teaching MI to carers and families in order to equip them with the skills to support their loved one’s recovery. Unlike in child and adolescent eating disorder services where the carers are empowered to take control of the recovery process, the NMM’s aim is to enable the person with the eating disorder to take full responsibility and develop skills for their recovery. The family’s role is to support this process.
Our model is constantly evolving with feedback from participants and the generation of new ideas. We believe carers are an essential part of a person’s recovery from an eating disorder and that carers need the skills to effectively support recovery. One of the first and key ways in which we work with carers is through the facilitation of workshops. These workshops are delivered in both the Maudsley inpatient and outpatient services by members of the multi-disciplinary team together with a person who has recovered from severe anorexia. Involving a person with a lived experience of recovery is invaluable as they offer hope and validation of the theory and practice.
The workshops are delivered over three half days. We discuss and stress the multi-factoral causes of eating disorders, including genes, the environment, personal life events such as transitions and traumas, and temperament, especially sensitivity, anxiety and perfectionism. Explaining the latest research, especially the effects of starvation on the brain, helps carers understand how hard it is for their loved one to change and the importance of carers in coaching them.
Using metaphors to enhance understanding
We describe the Cognitive Interpersonal Maintenance Model developed by Treasure and Schmidt.1 Like four pieces of a jigsaw, this links the emotional and thinking style of someone with anorexia with the nutritional consequences of starvation and interpersonal factors. The latter not only includes family traits such as having high standards, but also responses that carers may develop as a result of living with a life-threatening illness.
Professor Treasure developed the ‘Animal Metaphors’ as a light hearted way of explaining to carers how they may have established their own ways of coping with and responding emotionally to their loved one’s illness. This helps carers recognise when they are unintentionally interacting in a way that contributes to maintaining the illness. We find families are able to relate to these analogies in a way that does not feel they are being criticised or blamed but recognises that these are ‘normal’ responses when faced with the fear, sadness, or anger of a loved one being unwell.
Coping Styles: ‘The Kangaroo’ sees how fragile the person is and wants to protect them from harm or distress. In doing so they can disable the person from developing necessary coping skills and self-efficacy. ‘The Rhino’ tries desperately hard to apply logic, often becoming stressed and angry in their response to the illness, causing the person with the eating disorder to ‘argue’ in favour of the illness. Becoming a ‘dolphin’ gently nudging their loved one towards recovery is the most helpful approach. The dolphin swims alongside offering encouragement and coaching them, sometimes guiding, other times supporting from behind (Figure A).
Emotional Responses: ‘The Ostrich’ refers to carers who find it difficult to cope with distress caused by the illness and tries to avoid thinking or talking about it. This may result in them withdrawing. ‘The Jellyfish’ finds their emotions overwhelming and difficult to contain and often have underlying feelings of self-blame. They can become very tearful or anxious. We encourage parents to become a ‘St Bernard Dog’ who is reliable, calm and consistent in all situations, providing warmth and companionship along the way (Figure B).
We encourage carers to frequently demonstrate the ‘C’ words: care, collaboration, calmness, consistency, creativity, compassion and comedy with their loved one.
Building caregiver skills
An important element of the workshop is the recognition and acknowledgement of the enormous burden carers experience when supporting a person with anorexia/bulimia. Figure C2 was developed to explain how the role of caring for a loved one can lead to high levels of anxiety, stress and depression, and offers some solutions. Carers’ energies tend to be focused on things outside of their direct control, e.g. eating disorder symptoms and the refusal of the person to accept help. Understanding how people change and teaching carers MI skills provide them with the tools to effectively support their loved one in areas they have direct control over. Each session introduces and practices one element of the basic principles of MI: Open Questions, Affirmations, Reflections and Summaries (OARS).
MI is based on the belief that we have the capacity to change. We explain to carers how they can elicit motivation to change by using the following principles of MI:
1. Empathy: being able to understand and see things from another person’s perspective, strengthening relationships.
2. Ambivalence: between where the person is now and where they would like to be, including their core values. Tipping the balance towards change with the effective use of OARS.
3. Raising self-esteem and self-efficacy: using an abundance of affirmations that focus on the effort, intention and aspirations of the individual rather than the end goal.
4. We help carers recognise and avoid getting into arguments, particularly over food, by rolling with resistance. Arguing helps the person with the eating disorder rehearse the reasons for not changing.
In addition we also:
5. Encourage carers to be compassionate towards themselves, not only to enable them to sustain their caring role but also to be a positive role model for their loved one.3
We use games, live demonstrations and role-plays to show and to practice these skills.
Janet Treasure together with Smith, an experienced carer, and Crane who has successfully recovered from her own eating disorder, have developed and explained the ideas and skills taught in the workshops into a self-help book4 which carers have found an invaluable resource in developing their understanding, skills, and most importantly, confidence, in gently guiding their loved one’s recovery.
Working with families
The Maudsley inpatient service, which cares for people with very low BMI’s and often a long history of the illness, also offers more intensive family work.
Family sessions: These focus on interpersonal relationships, communication, patterns of interacting and the exploration of past experiences that may have caused emotional difficulties and contributed to the development/maintenance of the illness. There is a focus on developing understanding, expression and tolerance of emotions.
Using the principles of MI we explore what support patients need from their families to encourage recovery. These take different formats and it is not uncommon for us to work solely with parents for a time if we feel that it would be more helpful than having the patient present. Recognising that the nature of this illness can cause splits in families or result in manipulation of particular members, we often recommend estranged family members work together to support their loved one in a consistent way.
Multi-family work: bringing two families together for 2-3 days of intense therapeutic work. This can be particularly useful when families are geographically distant, when patients are stuck, or when there is limited time available. We structure the days with lots of different activities and ask dads, mums, patients and siblings to work together in subgroups as well as in their families. The collaborative nature of the programme is set from the beginning by asking the different subgroups to identify and share what they want/need help with.
Over the course of the programme we explore family trees, look at a timeline of how the illness has developed and a future timeline of where they would like things to be. Family sculpts are used as a powerful way of exploring the emotional closeness and distance family members have with one another currently and ideally. As homework, we ask patients to write ’what the eating disorder means to me', and family members to write 'what my loved one means to me'. The sharing of these letters often enables deep emotions such as love, loss, shame, guilt, sadness and fear to be expressed and responded to by all. We find that having multiple families together enables them to offer one another support and to reflect on each other’s experience which can be more meaningful and incisive than if offered by a professional.
Telephone and e-mail coaching: this is particularly helpful for the families of patients who may find it challenging to visit the ward regularly, or in instances where the patient may have chosen not to engage in family work. These incorporate psycho-education about eating disorders as well as skill based conversations using MI to support carers to manage periods of leave, develop ways to communicate that encourage recovery, and to prepare for discharge. For families who are engaged in face-to-face sessions, we may offer pre and post session support to carers to help them to manage their own feelings of guilt, shame, anger, or sadness associated with the illness in order to strengthen their ability to tolerate their loved ones emotions.
Individual systemic work: for those patients, of which there are few, whose families may not be able or willing to engage in treatment we offer individual sessions. These help the patient to think about the context they grew up in, and to understand and process relevant experiences and relationships that may be connected to the development/maintenance of the eating disorder. This helps them to change the way in which they manage their feelings and behaviour connected to these events/relationships, reducing the function of the eating disorder as a coping mechanism.
The NMM embodies the collaboration of the adult patient, their families/carers and the team at all stages of the treatment. The team passionately believe in the invaluable contribution and effectiveness that families have in the recovery process of an eating disorder.
Treasure, J., & Schmidt, U. (2013). The cognitive-interpersonal maintenance model of anorexia nervosa revisited: a summary of the evidence for cognitive, socio-emotional and interpersonal predisposing and perpetuating factors. Journal of Eating Disorders ,1.
Schmidt, U., & Treasure, J. (2006). Anorexia nervosa: valued and visible. A cognitive-interpersonal maintenance model and its implications for research and practice. [Review]. British Journal of Clinical Psychology, 45(Pt 3), 343-366.
Gale, C., Gilbert, P., Read, N., & Goss, K. (2012). An evaluation of the impact of introducing compassion focused therapy to a standard treatment programme for people with eating disorders. Clinical Psychology & Psychotherapy.
Treasure, J., Smith, G., & Crane, A. (2007). Skills-based Learning for Caring for a Loved One with an Eating Disorder: The New Maudsley Model. Routledge: East Sussex.
© NEDIC 2013 www.nedic.ca