A reflection from Evelyn Culnane and feedback from one family
One of my roles within this project, in addition to developing and implementing the project with a number of specialties and engaging clinicians, young people and families, involved co-facilitating sessions with parent groups alongside an experienced narrative family therapist (Pam Rycroft or Glenda Fredman).
The Team of Life approach appeared to have a profound effect on parents. During these sessions, parents had the opportunity to be with like-minded others, share accounts of their individual healthcare journeys with their young people and impacts/challenges along the way. Many parents spoke about their experience of diagnoses, feelings of anxiety, desperation and isolation at times and the immensity of raising and advocating for a young person with a health condition/disability. Despite discussion of these issues, there was a high degree of positivity and connectedness in all the sessions.
Parents then had the opportunity to hear from the young people themselves and ‘witness’ the Team of Life that their son/daughter had contributed to. The process of providing a ‘response’ was important and equally reaffirming as it allowed parents to share their thoughts on why the Team of Life was special to them and to acknowledge the journeys that their young people had been on.
As a clinician and parent, I appreciated the insights shared by parents and their honesty and candour. I learnt a great deal about the importance of being able to share stories within a safe, supportive environment and with other parents who have experienced similar or different challenges.
To give a sense of what these Team of Life sessions meant for some families, here is an edited version of an email we received from one father (names have been changed)
Thank you for sending through the notes from the Team of Life session. Francis, Georgina and myself have read them and shared them with Francis’ older brother Michael (laughing, crying and discussing thoughts). The session was beneficial in many ways but most importantly to Francis and his journey of learning to cope and deal with his health issues.
Francis was reluctant to attend the Team of Life Session, I believe this was because he has not shared his health issues with many people outside his immediate family before. He even at times does not give enough feedback to his Paediatric Doctors as to how he is going. As I said before, the session was beneficial in many ways,
- Francis had never met other people his age with similar problems before so I think he feels less isolated now.
- To be able to meet and talk to other kids in a non-threatening environment where you could just listen if you want, or have an input if you felt comfortable, was great and he would now be more inclined to share his story with others.
- Francis subconsciously knew people around him loved, cared, helped and supported him. But the Team of Life process was able to cleverly make him aware of the support he has around him and that he has all these people and things to help him through good and difficult times.
- It was also wonderful that Francis met fantastic people like the peer mentors Tim and Rebecca who have dealt with their own problems and are now helping others, this showed him that through your own adversity you can use it to help others.
Although this session was about the kids, it was great for Georgina and I to meet other parents and hear their stories. We are thankful that Francis’ condition is not as bad as many but sometimes you feel isolated, unsure if you are doing the right things or doing all you can. Being able to talk to other parents can give you a better perspective and understanding of what’s going on.
Thanks again, see you soon.