EDFA recognises and advocates for the effective involvement of families and carers in the treatment of eating disorders.
Family involvement is now seen as a valuable partnership for clinicians and services in order to support someone with an eating disorder.
If families and carers aren’t involved in the clinical care of a person with an eating disorder, the eating disorder is more likely to thrive and persist.
This is not opinion, this is based on clinical research and evidence.
EDFA champions for clinicians to:
- Better appreciate the value of allying with families and carers
- Access standards for families’ and carers’ involvement in treatment
- Develop organisational/clinical capacity for inclusion of families and carers in an active role.
We also recognise families and carers need a clear mandate and strategies to help them to play a key role in the care team.
Benefits of families and carers as allies in treatment
As a service or clinician, you will find many advantages to working closely with families and carers in treatment.
Advantages to allying with carers include:
- Better outcomes for patients
- Improving clinical job satisfaction
- Better information for clinician about patient
- Treatment effects between sessions
- Recovery-oriented environment around patient
- Reinforcing clinical messaging.
What can happen to disrupt this alliance with families?
We know we often present as anxious and worried at the beginning and you as a clinician can experience that in a range of ways – angry, demanding, vacillating, paralysed, emotionally disregulated, oblivious and so on.
Please remember that how we present when we receive a diagnosis of an eating disorder is rarely how we are the rest of the time.
Perfectly rational and normal families become stressed and anxious when our child won’t eat.
Our child looks and acts like a whole different person, their future is at risk… and at worst they may die.
Please remember we knew nothing about eating disorders before our child became unwell, and we face a steep learning curve before we can talk the ‘lingo’.
Work with us
We need to feel you are working with us and not pitting the eating disordered child against us – often we are the sane ones in the conversation when our beautiful children are very unwell.
Please don’t judge us – we feel vulnerable and guilty that this happened to our child on our watch and we may see judgment where none was intended.
Joining with us in fighting this illness is supportive and affirming. It helps us to find the strength we need to keep fighting. We need to hear from clinicians the following:
- Hope – confidence that our child/loved one will recover
- Reassurance we will not lose relationship with our child/loved one in the long run
- That we may need to get tough to get them back – tough love with loving compassion is required
- That what we are seeing is ‘normal – because it looks bizarre
- Acknowledgement that this is really tough and for many families/carers nothing they will ever do is tougher
- No time to waste – start treatment now.
- One bite, one meal, one day at a time – don’t think too far ahead
- That we as parents/carers have a unique and powerful role to play in getting our loved one well.
Are you a service provider or clinician interested in having an inservice run by an ‘expert carer’?
Please get in touch to find out what is available in your area.
We are very interested in working with clinicians and services looking to improve the way they integrate families and carers.