Expert carer coaches – a spark in the ED darkness

Expert carer coaches – a spark in the ED darkness

By the time you guide a child to recovery from an eating disorder, you are an expert on many things, including survival. Exciting new research is revealing how your experience with caring can help other carers, and speed the process of recovery.

Until an eating disorder developed in her family, Pamela Macdonald was ‘just another mother’ getting on with life. Today, Pamela and team members at King’s College, London, are studying the involvement of expert carer coaches in delivery of a skills training intervention to support carers of people with eating disorders.

Their paper will be published soon.

In the following interview, Pamela provides an insight into how an eating disorder changed her life, and how her exciting research holds hope for families everywhere:

You have found a new calling in life as a result of your child’s illness. Explain how this came about.

Initially I started research into carer skills training programmes from personal experience. Latterly however, my passion has come from working with carers over the past six years and understanding their need of support, information and guidance in how to best support and steer their loved ones along the path to recovery.

What did you learn through your experience as a carer?

Carers may have different needs at different stages of the illness. A carer new to the illness, for example, may have different support needs from a carer who has been living with the illness for several years. We are currently looking at different techniques to incorporate into our skills training programmes that address this.

About your own strengths and weaknesses?

My own strengths lie in the ability to reflect upon my own natural default position in terms of personal characteristics and traits … weaknesses … sometimes it’s difficult to shape and change those personality characteristics and there will always be the odd rhino or kangaroo moment.

Describe your passion behind the decision to tackle a PhD and describe why you chose the area of research?

Eight or nine years ago there wasn’t so much information out on helping carers. I was also living in a country where English wasn’t the first language which would have limited access even further. I think now with the advances in technology e-health and e-learning, these issues can be addressed and skills training programmes delivered by a variety of mediums.

Is there a lack of research in this area? Do we need more?

Research into family therapy and support has been developing over the years (Eisler, Dare, Lock, Zucker, Uehara, Treasure, Schmidt – to name a few). This needs to continue until access to the most beneficial programmes are available to all, i.e. different sub-groups have different requirements. For instance, research into partner and sibling needs is scarce and yet partners and siblings can be a valuable support to sufferers.

How important is personal experience in helping others? Why?
A recent qualitative study we carried out (Macdonald et al 2011) suggested that carers were extremely motivated, creative and proactive and an important part of the recovery process. They are a valuable resource in a collaborative approach towards the treatment of eating disorders and it would therefore be prudent to maximize this resource.

What benefits are there in families – parents and siblings – being involved in the recovery process? 
It is beneficial if all family members are involved in the recovery process. Equipping all family members with the appropriate skills training techniques takes the burden off one primary carer. Also, in eating disorders, particularly when there has been an in-patient stay, the work upon discharge sometimes continues for quite some time. It goes without saying, then, that carers should be offered support and guidance in continuing the work of the professionals, so that the entire team are working collaboratively and singing from the same song sheet.

Is too much expected of parents in aiding their child’s recovery?

Parents will experience burn-out and feelings of being alone and overwhelmed. They should be encouraged to look after their own physical and psychological needs – the mantra ‘’a distressed carer is an ineffective carer’’ is important to remember. Extended family or friends can perhaps ease this load although carers report that often they are frustrated by the lack of knowledge and a “why doesn’t she just eat” attitude from extended loved ones. They will be frustrated too but perhaps don’t have the same vested interest to equip themselves with information to the same degree as primary and secondary carers do. Support groups may be one idea or skills training such as that offered by Beat.

Through your research, what have you learnt about how integral carers are to recovery?

This fits in well with the research carried out on expressed emotion and family therapy and the ideas that carers are part of the solution as opposed to part of the problem. NICE guidelines recommend that sufferers are cared for at home and so it is hugely important that they are equipped with skills, techniques, information and support in order for them to carry out their role to the best of their ability.

What do you say to parents who, for whatever reason, don’t want to take on the carer role?
For carers of adult children, empathy is important. It is incredibly difficult, challenging and stressful supporting somebody through an ED. I would ask how can they access support for themselves? What do they see the best way forward as being? If they really feel they can’t support their loved one, is there anybody else who might be more suitable – such as a sibling, aunt or friend?

How to make the caring role easier:

• Get as much psycho-education and information on EDs as possible.
• Read Professor Janet Treasure’s book (Skills-based Learning for Caring for a Loved One with an Eating Disorder)!
• Learn the skills training and adaptive communication techniques.
• If open to it, self-reflection is useful – comparisons in traits between our loved ones and ourselves.
• Learn from mistakes – every mistake is a treasure!
• Look after your own needs – both physical and psychological.
• Reach out for support.
• Be a positive role model by being kind and compassionate to yourself.
• If possible, share the burden – are other family members aware of skills training and psycho-educational information, e.g. animal models?
• Try and devise your own adaptive coping mechanisms – going for a walk, listening to music, talking with friends.

PARENTS, DO NOT:

• Beat yourself up, e.g. by blaming or ruminating over what might have been – the important thing is now and the future and the best way forward.
• Make comparisons – each journey is different and each recovery has a different trajectory path.
• Be all things to all people – look after your own needs.

 Are there differences between caring for a child, and caring for an adult child or partner? 
Carers I’ve worked with over the years tell me there is a great difference as soon as their loved ones reach 18. This can either be with the professionals and the confidentiality clause or perhaps the adult child insisting on more independence which carers may find tough, especially if they’ve been totally encompassed or involved in their care for some time. Partners will have their own set of challenges which are different to that of a parent, e.g. having to live with someone who is now totally dependent whereas before they enjoyed a more balanced relationship. Loss of intimacy can also pose challenges for the partner.

What if your family has given up on you – you are in your 20s or 30s and want to recover – can someone outside the family fill the role of carer? How do you choose?

Someone outside the family can fill the role of carer. They need to ask themselves who they feel at ease with, how easy is it to talk to the person about their problem, is this person critical or easily upset about their eating, could they talk to this person even if they weren’t making progress with their eating? Can they trust this person to be always there when they need someone? No strings attached? No moral blackmail? How often are they in contact with this person? If they overcame the ED, what would this person’s likely response be?

If you could wave a magic wand, what changes would you like to see implemented to improve the lot of carers? 
To have access to the appropriate support pitched at the person’s own stage of the illness/stage of change. This could be either email or telephone or face-to-face. Support meaning access to an expert carer/professional trained in MI and with the hands-on experience of having supported someone through an ED.

Reflect on your journey – what message can you give to encourage parents to become advocates in raising awareness, perhaps becoming helpers to others? 

In our recent qualitative study that looked at the experience of expert carers participating in training, supervision and coaching of other carers, we found that the expert carers experienced a great deal of personal satisfaction, not only within their own personal situations but externally too, e.g. many found the skills useful in the workplace. Reflecting upon my own journey, I would never have believed that such a bright spark could have been ignited in such a dark tunnel. I have gained so much from working not only with the team in London who have been such a huge inspiration, but also the many carers I have come into contact with in the process of working on and completing my PhD. Their sheer drive and motivation to support their loved ones in fighting this illness, sometimes in the most difficult of circumstances, never ceases to amaze!