My name is Jenny Langley and I am on the Triangle trial steering committee because I am a carer with a passion for raising awareness and research, and a vision in which families are offered improved services in the future. Since my son recovered from anorexia, over ten years ago, I have been supporting families affected by eating disorders via a monthly support group, regular e-mail updates and carer skills workshops based on the New Maudsley approach. I have also been involved in several of the previous research projects using the New Maudsley approach. Research is crucial in order to provide a sound evidence base for the best novel approaches, to secure funding to make these approaches more widely available, and generally to secure improved support for families in the future.
The Triangle Project is so important because we know that when patients are in transition, the risk of relapse is very much heightened. I know when my son was discharged from the inpatient unit, we were terrified about doing or saying the wrong thing and we felt a huge amount of pressure on us to carry on the good work that the unit had achieved. The problem was we were not fully equipped with the knowledge of how we could best do that. We felt very alone. We were lucky that the outpatient unit were very caring and understanding and they helped us through this difficult phase. Unfortunately, not all families get this sort of support.
The aim of Triangle is to gain an understanding in to what can help sufferers to make that transition from the very structured hospital session to the much less structured home setting. How can families learn from the things that helped their loved ones to start on their recovery journey in that very structured environment? The home environment will never be the same as the hospital setting and that is a good thing. This project will help us to understand what is transferable, what might be transferable if modified a little, and what we should not be expecting carers to seek to replicate in the home environment. This applies both to the situation in which the sufferer might be returning to the family home, and where the sufferer is going to be living independently with carers offering support from a distance.
Participants are made up of a carer and a sufferer. This does not have to be the mother. It could be anyone else who is closely involved in the care process. Some participants will be randomly allocated to the intervention which is all online. Others will be allocated to treatment as usual. This is normal for research trials like this, so we can compare the results. Both groups are crucial to enable the results of the study to be worthwhile. You will be asked to complete short questionnaires (which take between 5 minutes and half an hour) once a month for 18 months. This might sound onerous. However, the value of you making the effort to do this is priceless. Even if you don’t receive a direct benefit yourselves you could make a real difference to families in the future.
Our hope is that families will experience significant positive benefits from this intervention:
“It is really useful meeting and talking to people who are going through the same problems because everyone can really relate and subsequently offer coping strategies and support.” – Patient
I’m hoping it will help carers of other sufferers having to cope with their loved one’s illness.” - Carer
“I am glad to be taking part in research which might help improve treatment for people with eating disorders.” – Patient
“I have had more help and support from TRIANGLE research and these forums than anywhere else.” - Carer
Finally, I would like to introduce you to the concept of Post Traumatic Growth. What you are going through right now is an unimaginable traumatic process and it is natural to assume that you might experience some post-traumatic stress (whether you are the carer or the sufferer). Post traumatic growth is when a person uses something they have learned from their negative experience in a positive way. So, for me my post traumatic growth has been to write books, support families and young people in schools, and raise awareness of eating disorders and other mental health issues. It is so rewarding to give something back. Your participation in this study could be part of your step towards post traumatic growth
Please help if you can!